Thyroid Disorders Community
Needing advice and some response
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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Needing advice and some response

Hi,

I am hoping for some answers, because I am having difficulty in functioning with hypothyroidism.  I recently participated in a discussion on the board where it was mentioned that there were certain challenges associated with people also having fibromyalgia syndrome with hypothyroidism.  I tried to search using those key words both on this site and elsewhere, but I want to find an article that my doctor will take seriously.  If there are challenges that might be being missed in my routine screening of the thyroid, I want to address them.  I am basically not functioning.  The sweating has started again and also my movement is out of control.  These things seem to be related to my thyroid replacement.  I am so down that I haven't even called to have a copy of my records sent so I could post recent lab values.  I did have a ferritin test and am awaiting the results.  Here are some of the symptoms that are occurring:

1) Persistant low weight-95 pounds, 5'4".
2) Trouble with temperature regulation and then sweats/with chills.
3) Restlessness and insomnia
4) Waking with pounding heart although pulse appears normal.  Walking a short distance will bring on this condtion.  It takes a long time of lying down for this symptoms to subside.
5) Dry skin to the point of not being able to use soap when bathing or showering.
5) Lack of appetite
6) Lack of sex drive/sexual functioning.
7) Production of small amount of breast milk.

Please try to help me find some info that might improve the doc's  visit.  My doc is not very good and bases all choices on lab results only.

Thanks,
Cheryl
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Hi, Cheryl--

My history in a nutshell: I do not meet the diagnostic criteria for fibromyalgia, but the muscle pain that I have (and have had since about seven years before making the menopausal transition) has many of the characteristics of fibromyalgia pain. So do the sleep disturbances that started soon after the muscle pain. Both of them crept in about twelve years ago. For a long stretch of time, hormone replacement therapy gave me excellent symptom relief. Then--it is obvious in hindsight--my increasingly struggling thyroid gland began to make its struggles known.

I have a LOT of experience with trying to find a physician with whom I could have a solid working relationship. My advice to you is to fire your physician, if it is at all possible, and try someone else. Every physician has a unique style of practicing medicine, in the same way that each of us sufferers has a unique style of being a patient. Nothing will change someone's style.

That goes double for giving a physician something to read. I am a social scientist, which gives me something in common with physicians. They depend on the medical research literature in their work; I depend on part of the social science research literature in mine. It is with real insight, in other words, that I say: If you give the test-results-obsessed doc something to read that he or she does not already agree with, he or she easily can find something in it to justify dismissing it, even if dismissing it is not fair.

I really feel for you, because I know that having hypothyroidism and fibromyalgia (or something resembling it) is a bit of a mess. Not that it cannot be straightened out; I am doing progressively better. It can be a challenge, though, when you have the symptoms that you describe, and I recognize several of them all too easily. Whatever you think is related to your thyroid replacement probably is, because I think that people's own inner sense of the cause-and-effect relations tends to be quite accurate. The majority of us are not hypochondriacs dreaming this stuff up; we know what our areas of malfunctioning are and what factors seem to be related to them.

You need an endocrinologist who believes this to be true and who will listen to you seriously and respectfully (AND who will listen to you rather than simply looking at lab results). What I have just said is especially true when you have the sort of "grab bag" of symptoms that both you and I have. It also is extra-true that we need someone who will know that he or she is only an endocrinologist, not a rheumatologist, and who will be happy to work collaboratively with us and with any other physicians we see.

I hope that you have a choice about continuing or not continuing to see Dr. "Show Me Numbers." During the lengthy process of assembling a team of physician-partners (a primary care doc, a gynecologist, a rheumatologist, and an endocrinologist), I have had a couple of experiences of hitting it off poorly with someone but going back several times, trying to build a reasonable relationship. I finally realized that finding a good patient/physician relationship (good for YOU) is like dating someone. Either it is going to work or it is not, and a physician whom someone else thinks the world of may be someone whom you cannot stand.

I do give someone two tries before I throw in the towel, which I think is a good idea. The first visit to a physician is a little like a first date, actually; it is not easy to tell what you will think of the person over time. What I have learned the hard way is that if someone's style of practicing medicine is not what I need, then going back for a third visit and beyond is simply futile.

Meanwhile, having an out-of-whack thyroid gland is enough to make you feel down all by itself. Then to have the sort of physician you describe is one more burden on your already overburdened morale. Good luck, and please send an update when you feel up to it.

Truly empathetically yours,
Jenny
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It would be helpful to know your TSH and both FT levels with Labs reference range and the meds you are taking and dosage. You sound hyper to me.  Whether med. inducted or you thyroid issue has progressed into an different thyroid condition, or other health conditions.  Also you might benefit more if you are treated by an endo.  who deals with a lot of thyroid patients per year - most deal more in diabetes.
Many other health conditions share a lot of thyroid symptoms, making it hard for doctor to make a correct diagnose and its a long tedious process of many test. But well worth in the end when a diagnose is finally made.

Below will get you started - hope the info will be helpful.

Adrenal fatigue/dysfunction symptoms are close to thyroid and are mistaken as such.
http://directory.obscureresearch.net/Thyroid_and_Adrenal
Signs and Symptoms: Adrenal Fatigue vs. Low Thyroid Function
http://www.drrind.com/scorecardmatrix.asp
Normal morning cortisol, followed by low levels throughout remainder of day indicate adrenal imbalance and low adrenal reserve. Overall, low adrenal cortisol production contributes to symptoms of fatigue, allergies, chemical sensitivity, and sugar craving. Low cortisol can also exacerbate symptoms of low thyroid.
http://www.chemicalbalance.com/adrenal_gland_test_results.htm
Increased levels of cortisol are found in Cushing's syndrome, excess thyroid (hyperthyroidism), obesity, ACTH-producing tumors, and high levels of stress.
Decreased levels of cortisol are found in Addison's disease, conditions of low thyroid, and hypopituitarism, in which pituitary activity is diminished.
http://findarticles.com/p/articles/mi_g2601/is_0003/ai_2601000373
CFIDS stands for Chronic Fatigue and Immune Dysfunction Syndrome.The nonspecific nature of the name CFIDS is appropriate because while there are many symptoms, disabling fatigue and exhaustion are the most prominent and consistent.  The rest have either headaches, muscle pain, joint pain, visual disturbances, emotional changes, memory loss, confusion, lymph node pain, or abdominal pain as the most severe symptom.
http://www.meactionuk.org.uk/Dr_David_Bells_Symptom_List.htm
Hormonal dysfunctionsuch as thyroid and adrenal disorders can cause CFS-like symptoms, as can several other known endocrine disorders.
http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome#Disease_associations
Fibromyalgia Symptoms short version of the "Risk Factors and Symptoms Checklist
http://thyroid.about.com/cs/fibromyalgiacfs/a/checklist.htm
The connection between mitral valve prolapse and thyroid conditions. Medical research has found that the prevalence of mitral valve prolapse is substantially greater in patients with autoimmune thyroid disorders such as Graves' Disease and Hashimoto's Thyroiditis.
Major Symptoms of MVP include:
http://thyroid.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=thyroid&zu=http%3A%2F%2Fwww.thyroid-info.com%2Farticles%2Fmitral-valve-prolapse.htm

Good Luck!
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GravesLady has raised a question about whether Cheryl's hypothyroidism may have progressed into another thyroid condition or other health condition. Another possibility: Cheryl's hypothyroidism is causing a mix of classic symptoms (such as dry skin) and paradoxical symptoms (such as restlessness and insomnia). When my endocrinologist diagnosed subclinical hypothyroidism (TSH level of 4.11 and free T4 in the normal range), the symptoms I was complaining about the most energetically were symptoms of hyperthyroidism. Despite my fear that levothyroxine would make parts of my difficult situation even worse, the medication has eased the paradoxical symptoms at the same pace at which it is easing the more usual symptoms of hypothyroidism.

The advice to be treated by an endo. who deals with a lot of thyroid patients is excellent. It will be good advice for Cheryl to put to use if she is able to fix what seems to be the major flaw in her medical care situation--that her current physician is not very good.
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P.S. Please pardon my cognitive fuzz. In a comment I just posted in which I reported the TSH level on which a diagnosis of subclinical hypothyroidism was made (in case anyone was curious), I failed to include the lab's reference range. The TSH value was 4.11 and the reference range was .32 - 5.0.
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I am too ill to respond right now.  But I greatly appreciate everyone's response.  I will try later.  I am sweating severely.

Thanks,
Cheryl
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Cheryl, I am so sorry you are not feeling well.  Don't rush to answer our post, feel better first. Then look through and study the info.

More info below.

Excessive sweating has many causes, including:
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If I seem to be belaboring my point, I apologize. I just think it is important for Cheryl especially, but also for everyone who struggles with hormone-related symptoms, to know that it is possible to search high and low for a diagnosis that explains your symptoms and never find it. Why? Because a person can have symptoms that do not seem logically related to what is really wrong, and this not entirely logical pattern of symptoms is not in the medical literature (although it may be, someday).

In what Cheryl described, I see the same sort of "mixed bag" set of symptoms that I have had. What has helped me the most was finding a highly competent endocrinologist who likes to solve puzzles (rather than preferring to focus only on lab test results) and who listens to me very closely when I tell him what I am experiencing. He has been extremely careful to be sure he is not overlooking something in addition to hypothyroidism. Beyond that, he views my problem as an atypical case and then focuses on the "What can we do about it?" puzzle. That is the important puzzle, and do not think that it cannot be solved if your symptoms do not fit into a recognized diagnostic category.

I do not know whether it is a coincidence, Cheryl, that you have fibromyalgia and I have many of its symptoms, but I wonder if we share a tendency to have mixed bags of sometimes wack-o symptoms. If only I had a dollar for every time my rheumatologist has said, "I do not understand why this (fill in the blank with my symptom du jour) is happening to you." Now my endocrinologist has said the same thing more than once. What matters is that both of them, after they have shrugged their shoulders because they are baffled, put a shoulder to the wheel and push hard to figure out how to DO something to improve my well-being.

I want to echo GravesLady's thought: I am so sorry you are not feeling well. Take your time in responding to us...if you choose to respond at all. I know how difficult it can be just to hold daily life together without trying to do anything that is not absolutely necessary. I hope that you can draw some strength from our supportiveness and not feel any time pressure about sending a reply.
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Hi,

I have been meaning to respond, but things have been awful for me.  I am going to respond briefly to everyone and try to cover all points.  

I have gone through a few endos and because of incapatability, the one who is known in this area as good does not want to see me.  She has access to all of my confidential records and I feel a bit violated by that.  It is a system called the Providence Health Care System.  I would like to write my whole story and have started to, but it is complex.  I remember after I was diagnosed (54% uptake) with Graves', a "thyroidologist" at Oregon Health Science University told me that she didn't think I should do anything.  I have been through about 4 endos at this point, and it would take a lot for me to explain why they didn't work out for me.  I am afraid at this point that I don't know how to find one.  Furthermore, I need a referral to get one, and getting my PCP to do that is so much fun.  I did find a possibility of a GP that was recommended on another site as being open-minded and good for thyroid disease.  Getting someone to take Medicare is a hurdle, but this one does.  

My symptoms are confusing, but what I do know is that until I became severely ill with Graves', the FMS was in remission for four years.  I know it might seem that I am hyper, because of my weight loss and lack of appetite and some other symptoms (palps).  But when I first became hypo after RAI, I started losing my appetite and losing weight.  I finally hit about 94 pounds.  My endo didn't care and said I was lucky that I wouldn't have to lose weight.  My GI doctor disagreed and prescribed Marinol.  I never could tolerate it, but no other nausea med worked and Phenergan added to the movement, especially the doses they had me on (150 mg/daily).  I settled on a small dose of Marinol (2.5 mg).  I even have problem with that.  It seems to be related to faster heart beat.  I have been weaning off of it.  I remember when I first went on it, and my GI doctor said if you can't afford it, do what you have to do.  She told me that she couldn't say anymore, she told me at the time without risking her license.  I became bothered by being on Marinol and finally tried a low dose of Remeron hoping it would help sleep and appetite.  It did briefly, but now it is adding on to my RLS and its affects are gone.  I am down to Marinol every other day, at least.  Sometimes, I go two days without it, but I couldn't stand how I was feeling last night and decided to take it.

I am so down that there is no way for me to tell you how down I am.  I feel like my life is over.  I have been ill with this for so long and the docs keep telling me to "hang in there."  I don't know how long I can anymore.  I am housebound from my illness.  I get breaks from time to time, and it is in this time that I try to make up for all the lost time.  My kids are growing up and I am a mess.  I went through so much to get pregnant, because my husband is a survivor of testicular cancer.  I went through $20,000 worth of fertility procedures.  They missed the thyroid problem.

I plan to post my labs, although they were within the "target" range, I believe.  It doesn't explain why the symptomology is getting worse.  I believe I am going hypo again.  My breasts are tender and I am producing milk.  This is my first sign.

I don't know if I answered everything.  I have been a mess for the last few days.  But last night was tormentuous.  I was moving incessantly.  I was sweating so badly and I couldn't dry off.  It went on for about 3-4 hours.  I didn't sleep until passed 3 AM and startled awake at 7:30 AM or so.  I had to wear earplugs for several hours because of sensitivity to noise.  It is bad enough that I have to do this at night, but to do it during the day, is hard to handle.  I use a noisemaker in my room that is so loud that I can't believe I can hear anything through it.

I have had my ferritin checked and it was 49.  I am taking Iron, because it is recommended under 50 when RLS presents.  Plus, I have heard low ferritin can affect how thyroid meds work.  As far as cortisol, no doctor including Endos believe it is possible.  They have run tests on me and say I am fine.  I think they should see a videotape of my life and it is far from fine.

I cannot remember who is the social scientist, but I agree my doc isn't likely to change the way she is.  I guess I have given up on life to a certain degree.  I have been able to convince her of certain things, but not without consequence to my health.  I need to fire her, but I can't until I find a replacement willing to treat me and prescribe what I am on.  This is challenging.

I am/was a sociology major until my illness took me down.  I have to say that I am at one of the lowest points in my life.  I am not sure that life is worth living any longer.

I do appreciate the time everyone took to respond to me and will try to post labs when I have them in hand.

Thanks,
Cheryl
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I will examine the info on sweating.  I never had this symptom until I became severely ill with thyroid disease.  Usually, when my meds are off, it starts again.  But my brain is a fog.  It is so much to sift through and I fear I have lost much of my cognitive ability and emotional stability.

Until next,
Cheryl
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Don't ever give up Cheryl! I know at times it hard but there is an answer and treatment out there someplace.  You just have to find it along with a competent doctor even if you have to travel to another state.  I know of some who did that for the first diagnose then was treated by phone from home thereafter.  You deserver the best, we all do. Not knowing your levels but you sound like you might need another RAI because of the hyper symptoms.  The weight lose alone.  That is what got me into doctors and treatment for Graves' was all the weight lose, like you I lost to under a 100 lbs and couldn't stop losing.  But RAI stopped the weight loss and saved my life because I know I would be dead way before now.
Insist that your doctor recommend you to a competent doctor, scream, holler, have a tantrum, whatever it takes.  Its your money, your body and your health.

Keep us posted, Good Luck and Feel Better Soon!
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Hi,

I was getting off the computer but thought I would check for a response.  I was given a large dose of RAI, because my doctor didn't even give a dose.  The aim was to destroy.  It has been confirmed that I have no thyroid by many.  I remember it took so long after RAI to hypo.  When I did, my TSH was 140.  I had the same symptoms then as I do now.  

I have even gone hypo within the last year and had the same symptoms I am listing.  I know it is strange, but my body has always been weird.  My TSH was between 1 and 2 off memory last time.  Free T4 was 1.13.  Not sure about Free T3.  In some ways, I wish it was that tissue was left behind, but I doubt it because I have gone too hypo even with meds.  

Anyway, when I have concrete labs, I will let you know.  I went to Mayo, because no one believed me in Oregon.  $1,300 for travel/lodging for a $30 test.  And then, they didn't believe the test.  I came back here and even with a 54% uptake, the docs didn't take it seriously and one suggested doing nothing.  I wish I could have let her feel how I have felt for almost 7 years now.  I am trying to hang on, but my life seems so useless.  I don't seem all that important in my kids' lives.  I feel like a total failure and have become almost totally housebound.  I don't have a lot of money.  My spouse hasn't worked in over 3 years because of my inability to care for my own children.  I feel so guilty and so broken down.

Thanks for caring though.

Cheryl
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Hi Cheryl
One sentence stood out in one of your posts and rang alarm bells LOUD!
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Dear Cheryl,

As I hope you can tell, you have several people sending you as much support as we can send electronically from a distance...not to mention sending you a LOT of caring. As often seems to be the case, GravesLady said it best when she said "Don't ever give up!" It is SO, so difficult, though, to need to fight hard on your own behalf at a time when you really do not have the physical or emotional strength to fight.

I hope that your husband not only knows how guilty you feel, I hope he is being very supportive of you. The person who is taking up the slack for someone who is struggling with a thyroid problem needs to know HOW bad we, the struggler, feel about the situation, and how much that guilt adds to our physical struggles, which are almost too much to cope with even without having something added to the load.

I have a lot in common with you, but I have only about one-tenth as much difficulty (in every area) as you do. I am the social scientist, by the way, and I work for a wee-tiny nonprofit research organization.  My boss, who is also a wonderful colleague, and I are the only researchers. In terms of our workload, we cannot afford to have one of us be unwell to the extent that I have been. Although I have struggled to hold up my end of the load, I know that my boss has worked harder than I wanted her to, just to take care of the part of the load that I simply could not carry.

You can say "I am sorry" to the person who is taking up your slack, and the person can say, "It is all right; I understand," but still, the guilt is enormous. If you think it will help your husband to understand how important it is for him to be super-supportive of you right now, please show him my comments. Morale is a major problem, especially because I am certain that you are 100% right in saying that you have lost much of your cognitive ability and emotional stability. I am speaking as someone who never before knew what it was like to have her moods be affected by hormones, as someone who could keep her brain operating normally even when not feeling well, as someone who is easy-going and even-tempered and emotionally resilient and all such good stuff.  I have been FLOORED to see the extent to which hypothyroidism (and my case is mild) can mess up both the emotional and cognitive parts of your mind in a variety of ways.

Let me pause here long enough to say to jenipeni that I do not think any of us should say "sorry" for commenting at length (as I am in the process of doing). If you have a lot to say that is important (and jenipeni certainly did), it takes a lot of words. If anyone does not want to read through a lengthy set of comments, then surely the person knows how to use the computer's "back" button or else can skim rather than reading word for word. I am sure that Cheryl is not complaining about our lengthy comments, or at least I hope not! I hope she is seeing every word as part of the life-line we are trying to throw to her as she flounders.

Some comments about physicians: Cheryl, the reason each of 4 endos did not work out for you does not matter at all, because I am sure it would make perfect sense to all of us who are caring about you from a distance. I am severely annoyed by the term "doctor shopping." Probably there are people in the world who are so picky that no physician is good enough for them, but I would bet that they are in the minority. For the rest of us, if we go from one physician's office to another, it is because objectively speaking, really good doctors (interpersonally as well as clinically, and I think that a physician has to be good in both areas in order to be competent) are in painfully short supply.

I am glad you have found the possibility of a GP who is open-minded and good for thyroid disease. It seems as if anyone would be an improvement over what you are putting up with now.  If this particular GP has a style of practicing medicine that includes listening closely to the patient and believing the patient, then you would be gaining a lot. A physician who has enough humility to do that often is someone who will seek advice from colleagues if your problem exceeds his or her expertise.

I have a special degree of empathy because some of my more vexing symptoms over time have come from what probably is a mild case of FMS. Just because I do not meet the criteria for being given the diagnosis, I and my rheumatologist see enough similarities to think that FMS is exactly what I have. Certainly, I know just what it can be like to seek medical care when, as is true of you and me both, you have a body that is weird. When the mechanisms underlying FMS are being debated about and researched, but are not yet understood, it is an odd and thoroughly infuriating form of arrogance when a physician does NOT to take our accounts of what we are experiencing seriously.

As for having a physician tell you that you are fine when your very reason for being there in the first place is that you are very far away from being anything remotely resembling fine--what could be any more crazy-making than that?  Do physicians of that sort think that they can simply will you into whatever physical condition the test results say to them you should be in? The most mind-boggling story I have heard was from a woman who had a problem inside her eye. The ophthalmologists who treated her were not depending on her reports of symptoms, they were able to look straight at the problem. She had a visit with an eye doc who dilated her pupil, looked into her eye at the problem, and actually said, "This cannot be happening."

As you know all too well, you need a very different kind of physician. I can tell that money is a major problem for you, but as GravesLady pointed out, there can be some non-traditional arrangements that are financially manageable and provide the help that a person needs. There are physicians who know that FMS often behaves oddly (such as yours going into remission for four years), that FMS can interact with a thyroid problem in odd and challenging ways, and that test results sometimes do not explain as much as everyone wishes they would. In addition, there actually are physicians out there who are not money-grabbers and who want so much to help that they will make themselves affordable. How to FIND that person, however, is the frustrating question. I remember being reduced to tears more than once, simply by the search, and I had a little more financial freedom than you do.

One more comment about bodily weirdness before I forget: Do not ever let any physician tell you that a certain symptom cannot be hypothyroidism. I am still in the process of easing up to whatever the right dosage of levothyroxine turns out to be, but my last increase--to 62.5 mcg.--has moved me closer to being the person I used to be than any other increase has done. One of the improvements has been in sleep disturbances of the kind that are typical of hyperthyroidism, not hypo. While you were having a tormentuous night last night, I was enjoying the latest in several of the best nights I have had in a long, long while. I figured out soon after starting to take levothyroxine that there was no need to take it first thing in the morning, because it does not keep me awake at bedtime. I also realized that within an hour of taking levothyroxine, it soothes the jittery feeling that I eventually realized had something to do with my thyroid gland's struggles. In addition, the quality of my sleep is improved if I time my levothyroxine dose for 5:00 P.M.

Let me say clearly that I am NOT suggesting any help for your situation in what I have experienced. I am just giving you some concrete evidence that any physician who says "This cannot be happening," even if it is on the basis of your reports rather than on the basis of objective evidence, is a physician who does not understand how weird some people's bodies can be. If you think that the physician might be teachable, then you might show him or her the preceding paragraph of my post. It was a very scary decision to begin taking levothyroxine, because I was afraid it would make my sleeping difficulties even worse. I know it is not my imagination that hypothyroidism turned out to be having a paradoxical effect on me (my endocrinologist agrees).

The person who HAS suggested something possibly helpful about your situation is jenipeni. I would advise your taking her technical explanation with you when you see what we all hope will be a new physician. Ask if the explanation makes any sense at all, and be very hesitant to accept "No" for an answer. You are at a point at which a compassionate physician ought to be willing to look into any possibility no matter what.

Another piece of advice: Conceal the identity of the person who provided the idea, by which I mean that just to be on the safe side, you should not let a physician know that the idea came from a "mere" nursing student. Unfortunately, there is an inflated-ego problem all over the place in the medical field, and it is wise to avoid it rather than tripping over it.

The same problem is widespread among people with Ph.D.s, by the way; students are given all sorts of subtle encouragements during graduate training to think that they are in the process of becoming really big deals (rather than the reality, which is that they simply are going through trade school, and the very same thing can be said about medical school). In my training, an occasional encouragement to have an expanded ego was so non-subtle that it took my breath away. Even at that, people with Ph.D.s are a step below physicians in general arrogance. It is difficult for someone to avoid picking up at least a trace of ego swelling during the medical training process, so it is a problem to be aware of and try to avoid.

That is true ten times over when you are so down that there is no way for you to tell us how down you really are.  You do not need even one more tiny little stressor, such as having a physician reject what might be an incredibly good insight, just because it did not come from another physician.

By the way, a major factor in my avoiding any ego swelling during my graduate training (in addition to maturity, since I was 40 when I started graduate school) was having once been a nurse's aide, which meant that I knew what working hard was REALLY like--not like the mamby-pamby supposedly hard work of academic endeavors. In my days as a nurse's aide on a general medical unit, I saw the way a major illness can be destructive in two directions at once--it damages the morale of the person who is ill and damages family relationships at the same time. My heart went out to you when I read your comment that you don't seem all that important in your kids' lives. Do you have access to family counseling on a sliding scale or free-of-charge basis in the area in which you live? It could be strengthening for all of you, if it is a possibility.

Furthermore, do you have access to individual counseling, again on an affordable basis? I know that psychologists (and counselors with other kinds of training) know how much a person can use professional support when she is going through the sort of medical-situation stress that you are going through--miserable symptoms, a mediocre physician, no answers, no relief for you or your family.... It is a huge load on your emotions, even if they are not messed up by your thyroid troubles, and I would bet that they are.  

Please stay in touch with us, even if it is only with the most brief of updates. As GravesLady said, we are wishing you good luck, and as jenipeni said, we are thinking of you.

With caring and empathy,
Jenny
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Hi,

I am taking in the information and am going to respond shortly. I found it informative and was also crying when I read some of it, because it is touching that others care not because of what I read.  I am not bothered by the length of writing.  I am actually writing a history that will be quite lengthy and I hope it will be alright to post it.  I think it is necessary for others to know what has happened to be able to offer help or moral support.  I can tell you guys care though and for that, I am grateful and also emotional.

Thanks,
Cheryl
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Jenny, I just wanted to say that that was one of the most insightful posts I have ever read. I certainly hope that not only Cheryl, but everyone will take the time to read every word and not just skim over the content. Kathy
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Kathy, thank you SO much for your comments!  Although I am feeling substantially better than I was for quite a long time, my morale is still vulnerable enough to welcome a boost of the sort that your comments gave me. There are people in the world (and I have crossed paths with them every so often) who have a "Can't you say it in fewer words?" attitude. Sometimes the answer is "No." When it is my intent only to be helpful, caring, and supportive, it means a lot to me to know that I succeeded.

Cheryl, of COURSE it will be alright for you to post a lengthy history! I am sure I can speak for your other allies when I say that I look forward to it. Sometimes there is a detail that helps other people to be helpful, but if nothing else, it can help hold your sanity together to get it all off your chest and know that people care enough about you to want to read it all. You are right, too; moral support can be provided more effectively, often, if all relevant details are known.

Apart from my medical condition, my work takes me into the area of people who vocationally provide help and support to other people.  I am fascinated by the almost magical morale-boosting power there can be in telling someone what you are experiencing and getting a response that says, essentially, "What you are experiencing is entirely reasonable."

Although everyone who is going through something intensely stressful is someone who needs that sort of feedback, I think that when you are facing 1) the craziness with which some physicians practice medicine, 2) the enormous difficulty of finding a physician who practices in a rational way, 3) the added challenge of getting what you need when your last name is not Rockefeller, AND you feel thoroughly crummy and unable to function at the same time, then being told that "Yup, everything you say makes perfect sense" is especially important. I have been the grateful beneficiary of that sort of feedback many. I am glad that I now can provide it to you, Cheryl.

I am logging off for the evening, but I look forward to seeing what you have written tomorrow...or whenever it is manageable. How well I know that your sorts of problems can dictate to you whether you can or cannot follow through with whatever your plans had been for the day.  So if you do not get back to us as soon as you had planned to, know that we still will be "out here" thinking about you and sending caring thoughts your way.
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I am in the works of a full history, but the stress and sweats have placed me in a vulnerable condition.  However, I want to respond the thoughtful posts and informative posts that have been sent my way.  It is so hard when people tell me stuff that invalidates my feelings and you guys have been very validating.  I have had some other boards treat me as though I was "being a victim" or have told me to just "take my power back."  Essentially, they have neglected to look at my history of abuse primarily in the formative years that has led to a lack of self-esteem and the illnesses that has been persisting for years.  So, I want to thank all of you for being so caring.

I was fascinated by the information abou galactorrhoea, and I do have a limited comprehension of the endocrine system.  Early on, I asked for a prolactin level to be run after noticing the discharge and lumps in the breast in an self-exam in the bath one night.  The tests were run and I was told that my prolactin levels were normal.  The also ran some tests to check the pituitary gland and adrenal function (24 hour urine test), but nothing came back out of the "normal" range.  However, I typed in galactorrhoea to research a bit.  I was fascinated that I am experiencing many of the symptoms associated with this disorder. A long time ago, I expressed the possibility to my last endo that I might have a pituitary tumor because of the breast leakage.  He said that it was possible that the gland was enlarged or had a tumor on it, but that with adequate thyroid replacement, the leakage would stop.  To some extent, this has been true.  After I was no longer "hypo" according to the numbers, the leaking stopped.  Incidently, I only noticed the leaking after doing the last part of the exam to check for discharge.  It looked like it did when I was breast-feeding and felt the same (breast tender).

I have increased my thyroxine dose slightly, because these symtoms (symptoms) are usually associated with hypo for me despite the TSH being between 1 and 2.  I am bothered that an MRI of the brain has not been run and I have asked for one before.  I was told that it is normal for a lot of women to have breast discharge and mentions of "wet nurses" were made.  But what bothers me is that the breast leakage is not without symptomology.  If I felt fine and there was no blood or abnormality on mammograms/ultrasounds, that would be one thing.  But I do not feel well and so I do not fall into the category of a little discharge is okay.  And it is just a little.  After I first time I saw discharge, I called my OB's office after hours.  I was freaked out because of the lumps.  The OB on call was as concerned and in fact, had the office call me to set up an appt. to be seen immediately.  Then, a mammogram was ordered.  Because my mom had breast cancer, things progressed rapidly and I was scared.  The place I get my X-rays, etc. is well known for being good.  They ran a mammogram with 6 views--digital mammography.  Nothing was noted but the radiologist coded it as "suspicious" so an ultrasound would be paid for by Medicare.  By the way, I am 36, although I refused to celebrate unless there were only 35 candles on the cake last year, claiming that I wanted some years back for what I have lost.  My request was granted.  The ultrasound revealed something in one of the ducts.  I was immediately sent for a surgical consult, with a doctor that I do have confidence in.  He is very humble, and that is rare to find especially when the doctor was trained at John's Hopkins University.  I found out about him through other people in the medical field.  He turned down a high position at John's Hopkins University, because he wanted to work with patients.  He could have made a lot more money there than in private practice.  So, let's just say that I respect him and he is so nice to me.  He never passes judgment.  Again, I went into see him because of the discharge.  He was concerned and immediately ordered an US and mammogram.  He also wanted to do three tests to check for the presence of blood in the milk.  I did the tests and took them back to the office.  I am awaiting the results, because I only took the tests in on Friday.  Previous results were negative for blood.  

But I am going to ask him if he will order an MRI of the brain to look for pituitary tumors.  I wondered if the adrenal glands can also be examined in such a way.  I will ask about the ACTH.  I had this 24 hour urine test done to check for many different hormones, including but not limited to the adrenal hormones.  Everything was "normal."  But this is what I think for what it is worth.  I think the point brought up about galactorrhoea is very valid and perhaps the tests are not showing it.  Perhaps, the docs need to look deeper.  I know that hypothyroidism can also lead to breast leakage.  The endocrine system is all link in a very interesting way.  I wish my brain could take stuff in like it used to.  But I am afraid that my childhood lead to a lack of confidence and mixed with the illness, it has made me unable and afraid to look at complex information.  It is as though I become panicked when looking at a science book like Biology, Anatomy and Physiology, etc.  I can read Sociology, but my self-esteem is absent.  That said, I braved it and looked into the info that was pointed out about galactorrhoea, because I need to know if something else could be being overlooked.  And, believe me, I appreciate the information and I do not feel like it was too long.  No info is too long if it can help or is intended to support someone in any way as far as I am concerned.  You need not apologize as you can see how long my post has become.

I guess what I am saying is I am going to approach a new doc, my current doc about this information.  But I have had tests done to check for adrenal function, pituitary function, and about everything I can think of to have tested.  It is so hard with the bad treatment.

I have had a lot of counseling, but my current condition has prevented me from leaving the house most of the time.  When I do get out, I have to make up for lost time doing errands.  I have twins.  But I do wish I could go back, because my insurance will pay and I have a good couple of counselors.  I cannot begin to describe the debilitation that my illness has caused.

I had my husband read your posts and he tries to understand.  He is seeing the distress, but it is hard because my personality and illness have had such an impact.  Also, there is a lot of history that I don't want to go into because it is too painful to go into right now.  Perhaps another time.

Well, I have to go and eat.  Believe it or not, my history is much longer than this post.  I hope that I will get through this and be able to finish my social science (sociology degree).  I had so many dreams and have watched them come and go.  I look back and see a lot of failure.  I know I should probably look at it differently, but my family history of the importance of being educated has caused me to feel badly.  According to my raising, I should have graduated college by 22 at the latest, by 24-25 a master's degree, and 28-30 for a PhD.  And then, of course, I really should be an M.D. as well.  I hope this gives a glimpse into why I feel badly about myself.  I am the only one who has taken this long. And my brother and sister both have graduate degrees.
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I noticed the links posted regarding tests to determine problems with the pituitary.

I wanted to add that I believe a couple of the tests were run, but it has been awhile.

1.  Blood test to look for Cortisol.  I think this is limiting, because hormones vary.

2.  24-hour free cortisol urine collection--I think it was more extensive, but I am sure that it was looking for hormones associated with the adrenal gland.

3.  24 hour (UFC) is a salivary cortisol screening test.  This was done before I was diagnosed with Graves'.  It indicated that my cortisol was slightly low.  I went to an endo, and I hope I didn't already mention this, but he did a test where CRH was used, I believe.  My memory of this is not good.  After the test, I asked the endo if anything else could be wrong in the endo system.  He said, "No."  He then told me to go to my OB-GYN, because I was probably perimenopausal.  I was 32.  My OB ran tests and repeated them.  She told me that I was not going into menopause and suggested that thyroid disease was the likely cause.  She gave me an order to check TSH.  But this always came back normal as it did on this occasion.  No further study was done until I went to Mayo.  Even there,  that is another story.  The endo that saw me was very dismissive of salivary tests and concluded things were fine because of this one test he ran. He was a jerk, I hate to say.

I wonder if there is a possibility that there is varying Cortisol levels.  I have heard of adrenal fatigue or burnout from chronic illness, but everyone I have seen dismisses this.  Any thoughts on this one?  I think I need a good doctor to fully examine me and be willing to look at the "mixed bag" of symptoms.  It really does require someone who is willing to try to solve a difficult puzzle.  Nicely put Jenny.

Thanks,
Cheryl

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Dear Cheryl,

After I read your latest comments, I called my answering machine at home (my internet access is at my office only) to remind myself to find and bring into work a wise comment that is relevant to what you said in your first paragraph. My time in the office today was already earmarked for certain activities when I came in, and for the rest of this week, workaday activities will make it difficult to focus (still a problem at this stage of getting my hypothyroidism under control). Next weekend, however, when my time is entirely my own, I plan to write what I hope will be an well-organized and compressed mini-essay inspired by the comments in your first paragraph (including the aforementioned wise comment, which I plan to quote). Boy-oh-BOY, do I have some comments to make, and I hope that they will further strengthen your morale.

For now, I want to say that I am very glad to hear you have a couple of good counselors, and your insurance will pay.  I am sure it feels like a minor comfort at the moment. When I think back a few months to the time when I felt my worst, and I remember what my everyday functioning was like, I can sort of imagine what you mean about your debilitation if I multiply my former debilitation by ten (and I was not trying to keep up with twins, who probably are still quite young...am I right?). Medically, my problems are much less complicated or severe than yours, which is why I multiply what I remember by ten as I try to imagine what you are going through. I remember feeling that it was like climbing one mountain after another to keep everyday life running at all. The unpredictability of whether each night and/or each day would be good or bad made it all the more difficult.

Being debilitated makes it more challenging to resolve relationship strains than I can begin to describe, and I am sure that you agree. When it became obvious last month that a major strain had developed in the usually very close relationship between my boss and me, I only wished it were practical to ask her if we could open our calendars and pencil-in the repair of our relationship for sometime this spring, when I hoped to feel closer to a fully functional person. Then in the meantime, could she just be super-supportive and nice to me? This is what I really longed to say!

The source of the strain, by the way, was the impact of my thyroid problem. Not that my boss said so or would have dreamed of saying such a thing, but it was obvious as we tried to tussle our problem to a point of resolution that my illness, and what it has done to our relationship, was at fault.

A lot of the destructive power of the illness (but again, it has been only a tenth as difficult as what you are going through) has been the way it has gone on and on. For now, I am omitting a bunch of details about my medical situation and just saying that there was a two-month lag between my beginning to be impaired and my starting to take levothyroxine. Then as we all know all too well, getting established on the right dose of levothyroxine is NOTHING like taking a ten-day course of an antibiotic and you are back to normal.

As a result, my boss has been through six difficult months with me. I know she is thinking positive, compassionate thoughts, but I sometimes wonder what is going on at the unconscious level. Does she understand that I have not developed sloppy habits of thinking or that I really could not do better about seeing certain angles in our research work (which I used to see) if only I tried harder? I hate the way a struggling thyroid gland can thoroughly mess up a person
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Hi,

I wanted to respond to the post from Jenny.  It was a rough day, but I agree with a lot of what your post had to say and look forward to hearing anything that will improve my moral.  I am sorry that you have experienced the same sorts of issues in your relationship with your boss.  It is hard no matter how it affects us.  There is so much I want to say, but I am tired.  I found an endo willing to see me on February 14th.  I woke up feeling a bit more positive today and called the GP I had mentioned.  Their office asked me if I had any back injuries and I said yes, because I do and I have fms.  Then, they told me they needed records before an appt. could be considered.  I was quite upset.  Because of having to switch doctors so much and because of the way so many docs are, there are a lot of things in my records I don't want other docs to see.  It prejudices them and they get into the whole "doctor shopping thing you mentioned.  I called back and got a different receptionist.  This time I said I had fms, but I made it clear that I wasn't looking for pain meds.  I told her that I wanted to see someone because of endocrine issues.  I asked her to relay this to the doc.  She said it would probably be a day or two.  I don't have a good feeling, but I am not going to think about it, because it is out of my hands.

I have most of my records and I am appalled at some of the innaccurate and judgmental comments that are present in them.  I have the right to ask that my records be amended or corrected, but right now, I don't have the health for it  I hate to say this but for the most part, I do not like doctors.  The endo I found is not associated with any hospital system which is good, takes Medicare, and has been practicing for 15 years for the thyroid, pituitary, and one other thing.  So, let's hope for a good visit and possibly another cancellation.  I am definitely going to ask for the MRI and am going to try to write as much history down as possible, but I am going to omit things that could prejudice the doctor like psychiatric.  They should be open-minded, but it affects them on some level usually.  After reading my records, I am going to be very careful about what comes out of my mouth other than clincial symptoms.

I wanted to mention something.  You have mentioned that you have not met the criteria for fms.  I am certain that Dr. Bennett, a well-known specialist for fms would agree that not everyone does.  Clinical signs matter.  I believe that there is a connection between fibro and thyroid in many cases.  The diagnosis is basically made by exclusion though.  He believes that I had fms long before I met diagnostic criteria.  And I believe that you likely have fms.  I wish they would study the thyroid, because I think it is one underlying cause of fms.  I have found websites that talk about the connection and my pain meds have been reduced since the treatment of my thyroid meds.  I think if adequately treated, there would be a possibility of me not needing to take meds.  Out of curiousity, what are your clinical signs, Jenny?

I will write more later.

Thanks,
Cheryl
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Hi, Cheryl--

I am very sorry to hear that after you started your day feeling a little more positive, you called the GP's office and ran into a brick wall. I call it a brick wall because I share your viewpoint about medical records exactly. There are several good reasons NOT to want to hand over a lot of records to a physician you have not ever seen, especially when you have anything that can be viewed as a psychiatric history, as you and I have. In fact, it occurred to me last night that when I had advised you to put together an on-paper overview of your medical history, I should have tossed in a suggestion that you carefully conceal everything related to your history of abuse and your having sought therapy for it. I should have known that you did not need to be warned!

To anyone who wonders whether Cheryl and I are being paranoid or wise, I can assure you that we are wise to be guarded. Having worked in medical settings (including a teaching hospital), I have gained a lot of insight into medical education, and I also have been an eavesdropper, many times, as a physician's thought process was unfolding. What I learned is that most physicians get a small dab of psychiatry as part of their medical education. It is just enough to make them dangerous, sometimes. All they know is that some sets of physical symptoms can have an emotional basis. They do not know enough more about psychiatry to do anything but apply the insight much too broadly.

There also is the factor of having comments in your records that are inaccurate (or judgmental) and therefore misleading. Then there is something you mentioned in an earlier post. I very easily feel as if my privacy is being outrageously violated if a physician I do not know at all is able to cruise freely through medical information about me. I feel this way about information that contains nothing startling at all; it is just the principle of the thing. Even my own on-paper accounts... I have learned that before I feel okay about handing over a lot of details, I need the first few minutes of an initial visit to be sure I feel comfortable with the person.

I am not an overly private person by nature, either, but being a medical patient means being naked symbolically as well as literally, whether we want to be or not. When you have a medical problem that goes on and on and on (as you and I have had), it is inevitable, at least for some of us, to become just a little bit touchy about feeling intruded upon. Finally, not only do former records show that you have seen quite a few physicians, which is one more way in which a new physician could be prejudiced against you, there is no possible way for anyone to pull as coherent an overview out of your records as you can pull together and provide.

The outlook for the GP does not sound good, and I am very sorry about that. Just in case a strategy that I once found helpful turns out to be useful for you, I want to tell you about it. In the course of my long medical saga, I once learned of a physician who was focused on my sort of problem. No sooner did I decide to see her than she decided to shift her attention to a slightly different sub-specialty. She no longer was seeing patients with problems like mine. I wanted to convey a message to her, asking if she knew of a physician who practiced in what had become her former sub-specialty, but her office staff gave me a cold shoulder and no cooperation.

I was so down and out at that point, I thought my morale would snap in two. More out of frustration than hope, I wrote the physician a letter, explaining my situation and my need for a recommendation, and I wrote "personal note" in the left-hand bottom corner of the front of the envelope. I was sure that the staff would not dare to fail to give her the letter unopened. All the same, I assumed cynically that she would be as unsympathetic as her staff had been, but it turned out not to be true at all. The experience made me realize that sometimes an end run around the office staff
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Just wanted to refer you to an article you should find very interesting, 'Pituitary Disease in Adults' - especially the section subtitled 'Hyperprolactinaemia and prolactinoma'

Box 1 lists the hormones that should be measured initially to detect pituitary hypo- or hyperfunction

http://www.mja.com.au/public/issues/180_08_190404/hur10511_fm.html

It is from the Medical Journal of Australia (a reputable/respectable resource) so you could show your doctor if you think it is appropriate.
Thinking of you and wishing you wellness
jenipeni

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You are priceless, jenipeni! It is wonderful that you are batting on Cheryl's team. You are so right about the source. Even though I am not in the medical field, my vocational areas overlaps with some of the areas of medicine. I can assure Cheryl that you are right-on in saying that the Medical Journal of Australia will be viewed as a reputable/respectable resource by any physician.

My jaw sagged when I followed the link you provided and found that even the pdf version of the article (much nicer for printing) is available free of charge. Quite a contrast to the policies of virtually every American professional journal. It probably says something about the cultural differences between America and other parts of the world in the areas of materialism and greed.

Cheryl, you asked yesterday about my clinical signs of FMS. At least one aspect of my sleep disturbances is characteristic of FMS, I think (although you are much more knowledgable in this area than I am, so please tell me if I am right or if I am mistaken). The aspect I am thinking of is a subjective sense of inadequate depth when I sleep.

Mostly, I have thought of my sleeping problems as estrogen-related, partly because my typical pattern of disturbed sleep seems to be a classic pattern for many perimenopausal (and some pregnant) women. My other reason for relating estrogen to my sleeping problems is the way HRT, once I started taking it, was something like a miracle cure.

HRT was a miracle cure for my muscles, too, but just before I began to take it, my vulnerability to muscle pain had worsened to the point of making me functionally disabled in some ways. Over and over, I would have what felt like an overuse injury after so little overuse that it was ridiculous.

In addition, although I never have had a time of ongoing sore places, I do have something that seems quite bizarre to me and that especially says "FMS" to my rheumatologist. Once an area of a muscle feels insulted, it "remembers" the insult for months and months afterward. Often, a place in my musculature that put me through many days of soreness while it "healed" from its "injury" (in each of these instances, the stress on the muscle was so slight that an actual injury seems unlikely) will suddenly feel sore again, for no apparent reason, as long as three years after the original insult!

My rheumatologist has said that among the people he sees who have FMS, many women report symptomatology ups and downs according to where they are in a menstrual cycle, but he has not known anyone but me for whom the link between muscle pain and estrogen is so strong. My clinical picture is not a simple one, though, and I agree wholeheartedly that it would be good if the FMS experts looked harder at the thyroid gland. I am still early in the process of getting established on levothyroxine (so it is too soon to know where the dust will settle ultimately in regard to whether I shall continue to need other hormones) but I am seeing interrelations among sleep, muscle pain, levothyroxine, estradiol, and progesterone (I take 17-beta estradiol and micronized progesterone). The interactions do not always seem to me like what I am sure the medical textbooks would say they should be.

More than one physician has agreed with me that what is true in my area of social science is true in medical areas, too. Looking back in time, and then looking at everything we would like to know, it is obvious that research is still in its infancy, and we have only about 2% of a complete picture of most things we are trying to understand. This is why I have found it positively maddening when I found myself talking to a physician whose attitude seemed to be that if my report of what was happening inside of me did not match up with something in the medical literature, then my report was not credible. It is an odd form of arrogance, as I commented in this forum a few days ago.
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Hi again

Some more websites related to the tests listed in the last page I refered you to.  These new ones are from a UK site but it is a .org so should be reliable and only slightly different if at all to the US.

I recommend that you print off each of the links and read them at your leisure with a highlighter pen in hand.  Use the pen everytime something pops out to you as interesting or appropriate.  Don't try and take it all in at once.

Prolactin test
http://labtestsonline.org/understanding/analytes/prolactin/test.html

Luteinising hormone (LH)
http://www.labtestsonline.org/understanding/analytes/lh/test.html

follicle-stimulating hormone (FSH)
http://www.labtestsonline.org/understanding/analytes/fsh/test.html

Testosterone
http://www.labtestsonline.org/understanding/analytes/testosterone/test.html

Estrogen
http://www.labtestsonline.org/understanding/analytes/estrogen/glance.html

Adrenocorticotropic hormone (ACTH)
http://www.labtestsonline.org/understanding/analytes/acth/test.html

Cortisol
http://www.labtestsonline.org/understanding/analytes/cortisol/test.html

Hope you don't feel bombarded!!!
Isn't Jenny a lovely supportive person?  Wow! We are blessed to be connected this way to others who can understand our suffering.  

Best wishes and wellness
jenipeni
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Hi everyone,

Sorry for disappearing.  I want to respond to all of the info since I was on and also have some news.  Nothing startling, but I did get the GP to agree to see me by calling back and asking a different person to send a message to me telling him that I only wanted help with the endocrine system.  His concern was that he does not treat chronic pain and does not write scripts for pain meds.  I am bothered by doctors that turn away patients that have the need for treatment of chronic pain.  But I do not need him for this and after reviewing my request, he has agreed to see me also.  I am scheduling an appointment on Monday and I don't know when the appt. will be.  There is much other info that I want to talk about, but I have to take a small break for the kids.  

I do appreciate all of the feedback and have some comments to add about FMS specifically relating to those that do not fit clearly into the "diagnostic criteria" which I feel is vague at best.

I will post again,
Cheryl
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Hi everyone,

It is a deviation from our discussion slightly, but I feel it is a necessary one since I have been doing a lot of thinking while having many ups and downs over the last few days.  I looked at the information provided by everyone, focusing on the recent info provided by Jenipeni and Jenny.  I am in a kind of brain fog, and I suspect that even if I were not, I would have a difficult time grasping information that is as complicated as the endo system.  I was glad to have been told that as I think I am very hard on myself growing up around a person who expected a lot but raised a child to have little confidence.  This is, in itself, a deviation from what I want to ask you guys about.

I was thinking back on a lot of the doctors I have seen and the information I have brought into them and their reaction to it.  And I started to worry about bringing in info to the new docs.  When looking back, I remembered feeling and being judged and told that I could find any medical condition that would fit my symptoms if I looked hard enough.  Doctors didn't have to say it, but some implied, that I was a hypochondriac.  I read the notes of a doctor that saw me before I was formally diagnosed with fibromyalgia syndrome.  Mind you, I was nauseous and vomiting daily.  It was part of my routine and the beginning of years of illness with a remission, only to return to what I actually consider worse.  She wrote, "It is not possible to rule out a personality disorder such as Munchousen Syndrome (I know that is spelled wrong). So, I will get to the point.

I am going to tell you the medicines I am on so you can try to be a doctor--a judgmental one perhaps--for me.  I know you are not judgmental, so please try to be for my sake.  Here is the list:

1) Vicodin--45 mg/day
2) Neurontin--800 mg/day
3) Valium--30 mg/day
4) Klonopin--.25 mg/day--going off of this one slowly
5) Remeron--30 mg/day
6) Marinol--2.5 mg once every 3 days
7) Ambien--10 mg every day except when Marinol is taken
8) Miralax--every day--they won't care about this

Here is my issue.  Once I tell them about these meds, which I don't know that I want to, they will ask who is prescribing or assume a psychiatrist is involved.  They also might want my records. Or they just might draw conclusion and dismiss me; even worse, blame it on the meds.  I had the problems before the meds.  It is an adequate assumption that I do not want conclusions drawn about me by new doctors based on opinions, inaccuracies, and just plain judgments made by prior/current doctors.  I was told by my prior therapist and still friend not to give this information out to doctors.  She said that it was affecting their judgment and that I was being "too honest."  She also said that she wished I could find a new doctor, out of the system, and start fresh with no previous records.  She felt that much of the info I provided was private and that I should not have to tell it.  This is the first dilemma.

The second one is that I don't know how much history or information I want to take into the new doctors.  I am thinking something very succinct, because I am having symptoms that warrant a look at what Jennipeni points out.  The fact that this breast discharge has continued even when my TSH was very low leads me to believe that many tests should be run, most importantly, an MRI of the brain.  I also believe a CT Scan should be run to examine the adrenal glands.  So, how do I keep it simple but also provide the physician the information he/she needs to want to help me solve the problem?  I thought about writing a brief history of all of the medically relevant procedures that have happened to me (no psychiatric or counseling).  Then, I thought I would add a list of current symptoms being as brief as possible.  And as for scholarly information, something that won't be too inundating.  It seems that doctors either become irritated or don't even look at a lot of info I present to them.  I did have a mammogram and ultrasound because of the leakage (left side for ultrasound only) and they told me everything was fine, except I had some new microcalcifications in my right breast.  They ran an extra shot, used digital mammograpy with CAD, and the calcifications were not clustered and were "round" in appearance.

I spoke to my surgeon after this appointment requesting an ultrasound of the right breast as well.  We are going to discuss this next week.  I also asked him if he would run an MRI of my brain, because the breast pain and leakage were accompanied by many symptoms that could be indicating problems in the pituitary gland.  He was reluctant, because he said that he wasn't an endo, but he did not dismiss me.  He was willing to discuss it.  I was firm in that if there was slight leakage and I felt well, I might not wish to pursue this, but that if he saw my life, he would understand that I am not well and this is why I was asking for his help.  I understand him not wanting to dive into endocrinology, but here are my thoughts on that.  He is checking my breasts because of the milky discharge, ordered an ultrasound and mammogram, so why not check the brain?  We haven't figured out the source of the problem.  He is a surgeon and performs almost every surgery.  Pituitary and thyroid surgeries are within his specialties. I can't remember who said it, but I knew if the initial tests came back normal, that I might have to push for more examination.  And the prediction was accurate.  I have had tests to check the pituitary and adrenals, specifically checking prolactin and cortisol, and they came back "normal."  These are not enough to make a definitive diagnosis.  Although I didn't understand everything Jennipeni gave me links to, it seems that many tests need to be run as this condition can be missed and often is.  

Funny thing, when I was ill with Graves' and no one knew, I went to OHSU to be seen in Dr. Bennett's clinic.  The nurse practitioner told me that one of my labs for growth hormone was unusually high, which is uncharacteristic of those with FMS.  She thought something else was up.  But everything else came back normal.  I don't know what test for growth hormone she ran, but I wonder what is going on with that right now.  It has been over three years since that exam.  Dr. Bennett thought Acromegaly was a possibility.  I was about 110 pounds at the time.

Later, after a diagnosis at Mayo and confirmation through a radiodine uptake and scan was made.  What ticked me off about OHSU, is that an thyroidologist of 17 years thougtht I should do nothing when I had a 54% uptake and clasic radiolgic findings with clinical signs at the time.  Why did I run the tests if we were going to do nothing?

One comment to Jenny about fibromyagia.  I am afraid I am not as knowledgeable as I should be because of the brain fog I am in a lot of the time, but you mentioned something about sleep.  A common characteristic of those with FMS is that they do not get deep, restorative sleep.  The sleep cycle is often very disturbed in general.  Many will sleep a lot, but wake up feeling like they are groggy and did not sleep.  I remember sleeping in excess of 12 hours and feeling downright unable to get up and function.  You all probably know that it is necessary to have adequate deep sleep, because this part of sleep is when the body repairs damage done to it throughout the day.  Without it, symptoms of FMS have been produced in people who did not have FMS but developed symptoms after sleep deprivation over a short period of time.  I can't swear to it, but I believe there is also a connection between the lack of this sleep and inadequate growth hormone.  I thought with improper deep sleep, growth hormone levels dropped.  Most with FMS have low growth hormone.  Many have opted with success to get injections of this, but it is massively spendy.  I will try to get more up-to-date info on fibromyagia syndrome so I can refresh my memory.  I wish I could treat Jenny with my microcurrent machine, because it truly does work.  I purchased it with insurance money I received after my last rear-end collision, because going to the doctor was costing me so much.  I think it is worth trying to locate a doctor who uses microcurrent, and a lot of physical therapists and chiropractors have been increasingly using it because of its success.  I don't know where you are Jenny, but I might be able to find a practioner who does this.  When I was really bad, no med worked.  A chiropractor took me on pro bono.  Within  6 sessions, she had me pain free.  But the thyroid disease was doing a number.  I did read what you had to say about the estrogen/female hormones.  I believe the thyroid and consequently, female hormones are often involved in fibromyalgia.  I will address this topic again soon.

I know I will get some good feedback from you guys about my fear of the upcoming appointments.  I also wonder if there is something short that I can bring in but that is reputable as well, so the doctor will look at it rather than glance at it.  I do plan on printing out the most recent info from the site Jennipeni provided.

That's it for tonight.
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Hi - Being from Australia I'd have to look up each drug before I know what they're for (different brand names) but even without doing that I have the general idea.  I'm sorry.  I appologise because medical people should be professional enough to treat you regardless and realise that you have physical complaints and investigate them without discrimination.  That doesn't help you though.  

I don't feel I have the resources to give you any new advice in this area.  The only suggestion I have will probably be very repugnant to you; You could always submit yourself to a psychiatrist (on referal by that practitioner who made the Munchausen's comment) to disprove such a rare differential diagnosis.  Then they may be forced to take the facts for facts, not tainted by the 'possibilities'.  I do not disbelieve you - how the hell could anyone fake milk secretion etc?

*PLEASE DON'T STOP READING - dont be offended please;

I have come across some information which indicates you should also have your testosterone levels checked.
"These results demonstrate that testosterone directly inhibits prolactin secretion" - maybe your testosterone is too low if your prolactin levels really are normal?  

http://joe.endocrinology-journals.org/cgi/content/abstract/102/2/153

This might seem unusual of me to say but I will say it anyway.  When you meet with a doctor don't feel you have to fill any silence uncomfortable or not.  Prepare what you want to have addressed and stick to it - take your speech on paper if you have to.  Stick to the story you have decided you are comfortable with sharing, and don't offer any additional info.  Answer the doctors questions after pausing to think about it - don't just say the first thing that pops into your head. Take one or two breaths when the question is put out there to give yourself time to think before you open your mouth.

Seeing a doctor can be a very stressful event.  You may find you are treated better if you take someone with you who you trust and is bold enough to stand up for you if inappropriate comments are made.  Get your companion to take notes, seriously who can remember what those doctors say.  The fact notes are being taken will make the doctor also consider more carefully what he/she says.

Best Wishes and wellness.
jenipeni
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Hi, Cheryl--

I just noticed now that you posted comments yesterday and again today. Although I had promised that this weekend, I would write a mini-essay, inspired by the feedback you have received at other patient-support sites, I can see that the mini-essay will have to wait until next weekend. We are getting totally swamped by work, where I work.

For the moment, I have a couple of quick comments. One is that there may be a way to tackle head-on the question of whether your symptoms are psychiatric or organic. I agree with your prior therapist; it creates a problem when you have to take all your old records with you to each new physician. I ran into the "Is it psychiatric?" question, too (while everyone was missing the point regarding my thyroid gland). I dealt with it through a combination of controlling how much information a new physician had. I took copies of every lab result I ever had had along with my own written overviews of my symptoms and the history of them.

Second, I had someone similar to your prior therapist who could go to bat for me--who was the "go-to" person for anyone with questions about whether my symptoms had a psychogenic basis. He was in a position to have screened me for that possibility and to say a definitive "No."

Oops...have to run.  More soon.

Thinking caring thoughts of you,
Jenny
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Hi, Cheryl--

I had one more comment I was going to make, but then my boss needed something from me urgently and I had to bail out. I am back now to say that in regard to your question: "I also wonder if there is something short that I can bring in but that is reputable as well...," I think you answered it. The article for which jenipeni provided a link a few days ago seems like an excellent choice.

I see that in her latest comments, jenipeni provided another link to the very sort of article you have in mind. She also gave what seems like excellent advice about a productive "approach" to the high-stress event of seeing a new physician when you have a messy medical history.

Incidentally, jenipeni, not only did I think that your suggestion of submitting oneself to a psychiatric appraisal was not at all offensive, or at least certainly should not be seen that way, what you suggested can indeed be a good approach. As I indicated in my last set of comments, I did something similar. If a new physician wants to put someone like Cheryl and me (who do have backgrounds with emotional troubles in them but who also have good reason to think that our physical problems have an organic substrate) into the "emotional in origin" category, it can effectively silence the physician to provide the name and telephone number of a professional who has assessed and ruled out that possibility.

Cheryl, thank you very much for the information about fibromyalgia and sleep. At this point, levothyroxine is making a positive difference in the quality of my sleep. It is making enough of a difference that my preferred plan of action is to fix my thyroid problem (meaning: get established on what seems to be an optimal dose of levothyroxine) and then see how much of a sleep problem (if any) is left over. My rheumatologist and endocrinologist both agree that this is a reasonable plan. Now all I have to do is find the patience that is necessary for the process of finding the right dose. Oh, patience...how I sometimes wish I could purchase extra amounts of patience!

Sending best wishes to you both,
Jenny
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P.S. I never should write something hurriedly these days, since I still have quite a bit of brain fuzz. In the first set of comments I posted today, I am not sure if my comment made sense about how I have dealt with the risk that a new physician would think my symptoms had emotional underpinnings. What I meant to say is that I have dealt with the risk through a combination of first, controlling how much information a new physician had, and second, having a professional "on tap" who had assessed the question of whether my symptoms could have an emotional basis, who was certain that they did not, and who said that he would be happy to talk to any physician. As the saying goes, the best defense is a good offense!
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Hi Guys,

Oops!  I missed a post by Jennipeni.  I will have to go back and look at it.  I will review everything that was said.  I might already have some answers from the initial feedback.  I will be in touch.  Today has been rough.  My sleep was poor and I woke up startled a couple of times and then was totally exhausted upon waking.  I am not a positive force in the house today.  The panic of insomnia and startling awake over the last three days has been too much and taken its toll.

I will be back.  Thanks guys.  Glad to hear your sleep is somewhat improved Jenny.

Cheryl
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Hi Jenipeni,

I went back and read some info you sent.  I was not offended.  In fact, I asked the doctor to check my testerone and had to be firm that I wanted this done.  I am going to look more closely at the other link.

I am afraid that I am in a bad place right now.  I had a couple of days that were good and we got snowed in on those days.  Then, it melted and my body has gone nuts again.  Also, on that day, my dad sent an email meant to go to my sister to me that was gossipy.  So, let's say that didn't help things.  In addition, there was an issue with another person that added stress.

Right now, I feel like I have taken two great big steps back.

To everyone, what are your thoughts on not mentioning medications except ones that will not spark questions that are bound to irritate me and sidetrack the doctor?  My psychiatrist is not a good one, so I don't know what she would say.  My former counselor would definitely speak up for me, but I am afraid that many doctors may blow her off and say that she is only a "Licensed Clinical Social Worker."  I think she is very intelligent, but I also know doctors, not all of them, but a lot.

I am signing off for now, because I am sweating, cold and hot, and agitated.

Thanks and until next,
Cheryl
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Hi, Cheryl--

I am sorry to hear that you have had a rough couple of days! The stresses have a way of piling on several at a time, don't they?

Despite your problems of the moment, you are able to think about me, and I was touched--all the more so because I recognize myself in your comment about "the panic of insomnia." I am hugely relieved that levothyroxine is easing my problems with sleep, but I am still in an early stage of the process of finding the right dose. Not surprisingly, my sleep problem is substantially better but a long way from cured. When I am wide awake at a time when I really need to be asleep, and when I know well what the consequences will be the next day, panic does have a way of settling in (which makes it all the more difficult to sleep).

It will not surprise you to hear that after developing sleep problems in my forties, and after redeveloping what seemed to be the very same problem after many years of being a sleeping champion with the help of HRT, I have had more than one physician want to home in on a diagnosis of depression. This was without the doc's having any idea that I have a history of maltreatment in early childhood and a lengthy course of psychotherapy in adulthood. I know that I seem like the perfectly pleasant, non-troubled person whom I long ago became, but a psychiatric label is so easy to stick onto a patient when a physician has no idea what is wrong.

My strategy may be a radical one, but I have never mentioned ANYTHING that I thought was not relevant to the puzzle I wanted the physician to solve. Furthermore, I have never revealed anything that I thought was irrelevant and that might spark a question. Truth is overrated in some situations. Once, when a medical assistant took a routine medical history, one of the questions was, "Have you ever needed counseling?" I made a split-second decision that the word "needed" could be interpreted in a lot of ways, and so I said, "No."

If you look again at jenipeni's January 21st comments, you will see some excellent advice in the next to the last paragraph. I know from experience that when you are a puzzle for a physician, it is very easy for his or her thought processes to take off in any number of directions. It also is very easy for the physician to lose track of what is most important, especially when you have a lengthy and complex medical history, as you and I do. The more you can guide the discussion repeatedly back to what is most important, the better.

Therefore, I think that jenipeni is immensely wise when she says "Prepare what you want to have addressed and stick to it." The symptoms that caused jenipeni to say "Aha! I think I know what your problem might be!" are important information, and your episodes of galactorrhea are something tangible, which sometimes help prevent a physician's attempting to attribute your problem to emotional factors. Also, it is VERY important information that you are not complaining about one symptom in isolation; that you see a set of symptoms that come and go together.

I hope that tomorrow will be a better day for you!

Sending good thoughts across the miles,
Jenny
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Hi Guys,

Everyon has been great.  I need to let you know where I am.  The symptoms have been so awful that I can barely stand it.  I am sometimes unable to move because of the sweats/chills.  It has been a rough few days now.  I had an appointment with my PCP with morning, and I had no one to drive me, because I have become basically unable to drive.  I am going to share some very personal information with you, because I think you can handle it.  Today, my children brought my old 2003 calendar to me while I was sitting on the couch having symptoms.  I keep my calenders, because I jot little notes about when they do things for the first time or just do things I want to remember.  2003 was a turning point year for me.  The year started with undiagnosed hypothyroidism and progressed into Graves', but no one would listen to me.  It is long, and that was the brief way of putting it.  In early 2003, I was having classic signs of endocrine problems, but the endo I saw dismissed me in a very humiliating way; besides, my labs showed normal just about to the end.  Even at the end, my TSH was .38 and the rest of the levels were within normal range.  I had clinical signs, but no one cared.  It was depression, fms, whatever to get me away from them.  I felt like I wanted to kill myself.  My psychiatrist thought ECT would be a good idea.  It seemed extreme, but I was in no shape to give informed consent.  They started doing the ECT.  For those that don't know what this is--shock therapy.  It seemed to do something, but not much.  I was also being treated by an associate for FMS/Myofascial pain syndrome.  He and his colleague had convinced themselves it helped.  It had done nothing really.  I was soon back in my state of panic/depression/and the pain never left.  I went back to the pain doctor and he told me that until I could "get my emotions under control," he would not treat the pain.  He told me that I needed more ECT and that those were the terms before he would give trigger point injections.  I felt so stuck.  I was probably getting more ill with every day that passed with Graves' disease.  But I went back and allowed them to do more ECT.  I feel that I was forced to do so, and so when I saw that calender, it was really upsetting to see how many times my brain had undergone this procedure when I was so sick.  All of the doctors I had seen overlooked my condition.  I fell on the floor with the calender and sobbed.  

I told my husband that I had no one to blame but myself for everything.  I wondered if I might have damaged my dopamine system from the ECT.  I remember the last day I went.  I woke up and started crying.  The nurse said, "It is really hard to be going through depression."  I looked around and saw all of these people (disabled or elderly) like me and it made me so sad but also made me know I didn't belong there.  The calender is a reminder of how sad and sick I have been for so long.

Back to the doctor I saw today, I resigned myself to the fact that she was of no help and wanted to cancel.  I went but planned to talk little.  I went into the office and waited.  She came in and asked how I was.  I said that I was fine.  But she could see for herself.  I came off the Duragesic patch recently, and she wanted to know how the transition to Vicodin had gone.  Pain is not a big issue for me right now and the taper down was a success.  She was pleased.  I am usually talkative, but I only responded to her question.  "Do you feel your pain being adequately treated on that dose."  I said, "Yes."  I planned to get my records for the last year and leave.

Then, she asked me if there was anything else I wanted to discuss.  I told her that I wanted to just tell her the symptoms I have been having off and on for over 3 years.  I told her about the breast discharge, the sweating with chills (she could feel it on my skin), my weight loss, body temperature regulation issues.  This is where I told a small lie.  I told her that I had been talking with my father who teaches medical students and nurses, and that he had stated that these symptoms indicate the possibility of problems with the pituitary.  She finished the sentence with me.  My dad does teach med students and nurses, but we do not talk.  In fact, he wrote that he was bored by my emails to him.  He is from India and so is she.  She, I believe, became more interested after hearing that my dad was extremely educated and being from India affected her as well.  She suddenly was a bit different.  She asked about my exams, wondering if a mammogram and ultrasound had been run. I told her yes but that I felt it was not a good idea to only do a ultrasound on the left breast, when the right one was in severe pain.  She then requested to do a clinical breast exam.  It hurt like hell.  She told me that my right breast was lumpy, unlike the left.  She asked about my mom's breast cancer.  She wanted an ultrasound also.

She started asking questions.  

She wanted to know if I had eye problems, which I really don't, but I get dizzy at times.  I also have headaches.  She wanted an eye exam performed, but in order to get Medicare to do this, she would have to give a reason.  I know her reason is suspicion in the pituitary gland.  She said that she wanted to run some blood tests and a 24 hour urine cortisol first.  Then, she said maybe an MRI could be a next step.  She is right that Medicare works this way.  I wish I knew all of the tests she is running, but I don't.  They had difficulty getting blood, which is never a problem.  I know that ACTH, prolactin, other female hormones, cortisol are part of the blood work.  I made an appointment to see the new doctor on Friday.

I know that a list of what should be done to check for pituitary/adrenal issues.  But I can barely function and am in a daze.  I wondered if perhaps one of you could write down the necessary tests to test for pituitary/adrenal function?  And I wondered if there is a way to look into hypothalamic function or any other gland involved in temp regulation?  It looked like the Pineal gland was as well.  Maybe Jenipeni.  I know it is a lot to ask, so you can say "no."

I cannot tell you where I was today and over the last few days.  Everyone in my house went outside to enjoy the warm day, and I was wearing winter clothes and gloves--still freezing.  I told my husband that I did not know if I could continue on this way with no quality of life.  I feel like I am not useful and I have missed so much of my life.  I wonder what difference it would make if I were not here to the universe or even my family.  If I could have a normal life again, I could forget the past.  But it keeps going.  And my dad and sister are both angry with me.  I got an email from my sister, and she has been upset with me for a month because of something she thinks happened.  Her husband fixed part of our siding after we moved in.  He is kind of loud, and her family roughouses more than we do, but in this case, nothing happened.  My brother-in-law came to my house without calling to finish the job (out of nowhere).  He brought my nephew.  I had noticed that this job was going on and on, partly because my kids were outside interacting with him a lot.  So, the last couple of times he was out, I made them stay in.  Well, this day, I felt awful physically.  I told the kids that they had to stay inside and let him work.  After he was done, I brought them down to play with their cousin.  They played for a long time.  It got really rough and my partner did tell our kids not to kick the ball against or over this lattice we have for a fence.  I think that is parenting.  He finally did ask them to come in.  We had to eat and they had to go to bed.  The next day, much of the lattice was destroyed from being hit hard with the ball.  But I let it go.  It wasn't something I wanted to deal with right then, but oh well, I did.  We had to take it all down but I never said anything.

Then, I get this email telling me that Nathanael cannot understand, but he picked up on something.  She was hurt by the visit and it affected Nathanael.  This is the way she always is.  I can't do anything right.  I already feel like a bad person, and I didn't put the whole email here, but it caused stress when the sweating had finally started.  Sorry to ramble, but I feel like I am losing everything.  I wrote her two emails.  The first acknowledged how she felt and inquired about what my nephew said so I could try to help.  The second one told her exactly how I was feeling about myself and how ill I was.  For now, I am not reading any responses or email from her or my dad.  I need them away for awhile.  


The way I feel is just plain awful.

I did read the info Jenny about telling/not telling info.  I have decided that I am not going to disclose the information about meds that will prejudice them.  I also will not be bringing any psychiatric/counseling into this picture.  

I had a break from the sweats, so I wrote.  It is not very coherent, because I am not well.  

By the way, no matter how low I feel, I always think about people like you guys.  If I can help someone with info, I feel a little better. I don't know why.  I like all of you guys.  You don't make me feel small or like I am pathetic.  You know all of the negative that you already think but people want to tell you.

Thanks and until next,

Cheryl
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Hi,

I missed your posts about the tests.  I will try to look through it, because I need to have a plan.  I still think a list wouldn't hurt, because I can often get the doc to do the tests if I know there names.  But I overlooked that post.  I so appreciate you.

Cheryl
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Hi, Cheryl--

I am speechless after reading everything that you have been through. I can understand why you would say to your husband that you have no one to blame but yourself for everything, especially because it is a struggle for you, I know, to have adequate self-esteem (the damage that can be done in the early years of life is pretty horrible, isn't it?).

All the same, I want to say please, please, please do not be hard on yourself!! I cannot even begin to imagine trying to make an informed decision about any treatment, especially about something as radical as ECT, while suffering from undiagnosed Graves' Disease. I have only a mild case of hypothyroidism, and one of my primary complaints (to anyone who will listen!) is how thoroughly the problem can mess up a person's mind. On my not-so-good days, I struggle hard to make the simplest decisions, and keeping myself reasonably well organized is almost a lost cause. On my better days, I am reminded of what I used to be like cognitively (as recently as a year ago), and I am stunned to realize how much thinking power my thyroid struggles can take away.

Here is a very small comfort, probably, but I am sure that you welcome any comfort you can get right now. I doubt that the ECT damaged your dopamine system. I know quite a bit about ECT and its after-effects, so I am basing my opinion on something more than wishful thinking on your behalf. I am sure you would wonder about it, though, because my symptoms are enough like yours to give me some insight, I think, into what you feel like emotionally at times. Since I have been emotionally as stable as a rock for quite a few years, I am especially conscious of the way a thyroid problem can pull the rug out from under a person emotionally. Worrying excessively or else worrying about something that is not a reason to worry are two of the things I do best these days, and I know that it is all coming from my thyroid's struggles. The worries seem so realistic, too, even though my intellect is trying to tell me otherwise. I am beginning to understand the term "hypo hell" and how appropriate it is.

In addition, although many of us forum members have stories of our thyroid problem having been a missed diagnosis, your story is the most nightmarish I have read. During the years of your ordeal, you have had to endure some mediocre (or worse) physicians who also were truly horrible human beings. You are an incredibly strong person to have kept on living life at all. No one could be more the opposite of small or pathetic than you are!

I am so very, very glad that your visit with the PCP went the way it did. I saw myself in your comments that you almost canceled the visit, and when you did go, it was with a feeling of resignation that she would be no help. I have been in a similar situation. When you really need help, and instead, you have been pummeled by more than one physician, I think the human tendency is to feel defeated in advance rather than getting your hopes up only to have them crash to earth again.

Now, even though something very good happened, it is difficult to keep going when you feel just plain awful. I know this from my own experience, and I think that even on my worst days, I am not feeling nearly as awful as you do.

Know that I am plugging for you from a distance, feeling relieved that someone took you seriously and that testing (meaningful testing) is in the works. I think you are wise to keep information related to your counseling out of the picture.

Here is one more tip, however, in case some information about your emotional challenges somehow creeps into the picture. Years ago when I was in the most difficult part of a deeply digging psychotherapeutic process (and having lots of anxiety as a result), I had a mild "mystery illness," meaning something that dragged me down and went on and on and on. When an infectious diseases specialist seemed to want to blame my illness on my emotional struggles, I calmly said that I did not think it was an either/or situation in which either I had an emotional problem or I had an organic one. I thought I had both, especially because some of the symptoms of the illness were not like anything that an emotional problem could produce. Others symptoms, such as fatigue, had a different quality from the kind of fatigue that sometimes was caused by my emotional wars. The physician actually thought about what I had said, saw the sense in it, and proceeded accordingly.

The moral to the story: Sometimes when you are prepared with a calm and self-confident comment (the self-confidence part does not come easily to you, I know!), if you are fortunate enough to be talking to a reasonable physician, you can help the physician with the process of ruling out the mind/body connection that physicians sometimes are too ready to suspect. Most physicians know so little about psychiatry that they know just enough to jump to wrong conclusions. What matters is whether the physician is a reasonable person who will listen to common sense. It seems as if you now have that sort of physician working for you. This good news gets my day off to a good start.

I think that you are smart to put together a plan before your next doctor's visit. You are so right; a list wouldn't hurt, especially because you obviously know how to raise a question about a certain test in a way that gets a physician to cooperate with you, not be antagonized.

It must be incredibly difficult to get a plan together when you feel as unwell as you do. I am crossing my fingers for you that you can find the strength you need.

Sending good thoughts your way,
Jenny

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Hi Cheryl

If I were you the one test I would push most for is the MRI.

-MRI

After that;
-Prolactin
-Testosterone
-Cortisol

When was the last time you had your thyroid levels checked?
-Thyroid-stimulating hormone (TSH)
-Free T4
-Free T3

If the doctor is happy to test then hopefully they will also test (but don't worry if they don't);
-Luteinising hormone (LH)
-Follicle-stimulating hormone (FSH)
-Oestradiol

I would print a copy of the following article (which was listed earlier)...and take it with you.
http://www.mja.com.au/public/issues/180_08_190404/hur10511_fm.html

THe doctor may not take you seriously if you say "someone on the net/forum said..."  

I know you are not well BUT you need to know what test you want and why so you don't get sidelined by the doctor.  

Saying that you did the research yourself would be fine, they don't need to know you had help.  Admit you are no expert BUT also think these issues are too important and complex to ignore.  

Allow the doctor to think they had the idea themselves - so you don't want to go in with too much information!!! Stroke that ego-he he!!!

Best wishes.
jenipeni
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Hi again everyone,

I apprciated your responses and can tell that you care a lot about what is up.  The PCP that I saw, I absolutely despise.  I had gone in resigned because she and that office have ignored the symptoms all too long.  I never thought she would have any reaction to anything I said.  I am pretty sure that the only reasons she reacted are 1) I fibbed and brought my father as an authority into the picture and they are both from India, and 2) I also brought up that I had twins and that my daughter had asked if I could play that morning and I was unable to do so, leading me to wonder why I even wake up.  She has a child and I believe that this struck a soft spot inside her, because she has shown little compassion for me since she became my physician.

I am pretty sure that those tests are being run.  I know the cortisol and prolactin are being run.  Then, I am going to start a 24 hour urine collection tomorrow.  I believe this is a related to adrenal function and is supposed to check cortisol throughout the day, but I can't remember.  I know I saw ACTH up on the screen when I went in to get the blood draw, but I don't know if that is a blood test or part of the urine.  With respect to the FSH, LH, and Estradiol and Testosterone, these tests are being ordered by my OB separately, and I am not sure if they were part of what my PCP ordered.  It says total free next to testosterone and estadiol.  They are also wanting a lipid panel for monitoring cholesterol since this has never been done.  My OB was a bit shocked about that because of the thyroid condition.

I called Medicare today to find out if an MRI and eye exam would be paid for and they said yes.  If the doctor is using it for diagnostic purposes and it is "medically necessary," it would be covered.  The doctor I am seeing tomorrow is my surgeon and the doctor I am seeing on Friday is a new one.  He is the GP that requested records, but after I explained I only wanted help with the endo system, he agreed to see me.  I have many cooks in the kitchen.  My PCP caught me off guard by actually showing any concern as a physician.  I never thought she would order any tests.  However, she had checked my ferritin and the level was 49.  I know this is within normal range; however, with restless legs syndrome, anything under 50 and you are supposed to supplement with iron. She has told me this and didn't recommended it saying that it was better than the 39 from the previous year.  I am assuming she thinks I am on iron.  I have started taking 1/2 capsule of Iron daily to be conservative and will ask for a repeat ferritin test after awhile.  I have read that low ferritin levels can cause problems with thyroid replacement as well as contribute to restless legs syndrome.

I appreciate the listing of the tests and am going to print out the article.  And to Jenipeni, I couldn't agree more with you about leaving out that someone on a forum mentioned it.  I think you guys are a great source and more knowledgeable than the doctors, but there egos get the better of them.  I might use my father, only because it goes over better, but I am not sure if I need him for my PCP.  I also agree than the MRI is the best and it seemed as though my PCP wanted to order it, but she was also concerned that if she didn't initially run some basic tests, they would not pay for the MRI.  I agree and disagree.  The clinical signs justify an MRI and I am going to speak with my surgeon about this.  He is somewhat reserved about this, because he isn't an endo.  But it is my opinion that although he is not an endo, he is involved in this in that he is the one everyone is sending me to because of the continued breast problems.  This leads to what is causing the breast problems.  From there, the pituitary has to be considered.  He does like me and is a very open person.  I just think I need to explain it to him and hope for an order.  I think this continuing problem needs to be explored.

To Jenny, I appreciated and was also tearful when reading your response only because I could feel that you understood what I had been through.  I only touched the surface of what has gone on.  Much went on before that, but I am afraid that I have not been able to put in all down in words.  That was the worst of it.  I believe you have the knowledge to tell me about the ECT.  The reason I wondered about my dopamine system was because the movement became much worse after the ECT. However, it was there before.  The movement is all through my body.  I remembered sitting in on a psychology class when I was younger.  The teachere spoke about ECT and the long-term damage it did to a colleage of his.  He spoke of the neurons and the destruction it does when this grand mal seizure is produced, reaking havoc on the neurons in a destructive way.  I cannot remember most of it, but the conclusion was that it should not be used in most cases.  In my case, it was a flagrant abuse of patient rights and I do not feel that I was in a position to give consent since the treatment of my pain was being witheld unless I received ECT.  But I did feel a little better when you said that it probably was not the cause of problems in the dopamine system.  What I hope is that they can find the problem and stop it.  It has taken me to a place that is not normal and it is a struggle to survive daily.  I do, however, know that many others have it worse and I will not say that it cannot get worse.  Thank you for your compassion, because I feel that I need a family right now.  And you guys are it as I feel I have lost my family I was born into to a large extent.  Perhaps the damage can be repaired at another time.

And, Jenipeni, you have also been a great support and informative.  I appreciate all of you.  Here are my recent labs for the thyroid:

Free T3  2.9 pg/ml    range (2.3-4.2)
Free T4  1.44 ng/dl   range (0.75-2.00)
TSH      1.35 uIU/mL  range (0.30-4.70)

I am going to put ferritin for feedback  49 ng/mL  range (10-291).  I put all of the tests and results as they appeared, although I don't truly understand the measurements.  I know where the TSH is recommended to be, but no one has ever explained the measurements.  I don't think they are that important to understand, especially if the patient is feeling bad.  However, I respect your feedback.  What do you think of the thyroid results?  What you do think of the 24 hour urine test?  And I am pushing for the MRI. Do you think I am making a mistake having 3 docs involved.  I can't have my PCP involved with the other two.  She might tell private information to them, so I have left her out of the picture except that I will provide thyroid test records.  I won't be able to get them all to the doctor by Friday.  But I have the most recent results on paper and am hoping to get some more by a formal request to records.

I will probably write more later, but I am having carry-over stress from the family problems and health issues.  Thanks so much for being with me through it.

Cheryl
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Hi,

For some reason, I can't get to the info at that link:  http://www.mja.com.au/public/issues/180_08_190404/hur10511_fm.html

I don't know if the site is busy or what.  Other than that, I can go to sites.  Anyone else having this problem.  I wonder if there is restricted access.  I was able to get the other articles, but was hoping for this one.

Get back to me when you get a chance.  I am glad I got some resources.  Thanks so much again and for writing the tests down for me.

Cheryl
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Hi, Cheryl--

I DO care a lot about what is up. I am sorry that I misunderstood about which PCP you were seeing. It did seem to me as if you were not describing a first visit, so you would think I would not have been confused, but I still suffer from fuzzy thinking which I know is related to my thyroid gland's inadequacy.

I suppose that finally getting a response out of a physician who has been totally indifferent is better than more of the same old callousness, but it is only slightly better, I am sure. I am hoping hard that the GP will listen to you seriously and sympathetically.

Before you see the surgeon tomorrow, you might look again at the comments I made on January 15th. I was afraid of exactly what happened: that he would not want to order an MRI. Although my comments are now somewhat outdated, the thought about a possible way to get the surgeon to help you are not outdated at all.

You are so right about the ECT having been a flagrant abuse of your rights! There is the right to make an informed decision, which is not really possible when an endocrine problem may be making it impossible to think clearly, and there also is the right to receive the medical help you need without any strings attached. What was done to you was nothing short of horrifying.

In regard to ECT: It was highly destructive in bygone days, when it was at the peak of popularity. Fifty years ago, the amount of electricity and the way it was used were much, much different from the present day. It was a truly brutal procedure.

These days, I think any competent therapist would agree with you--ECT should not be used in most cases. There are a few unusual situations in which it is useful, and the way of administering ECT has been refined to the point that damage is highly unlikely.

Even in the bad old days, when people suffered damage that sometimes was extensive, being emotionally lifeless was the most apparent effect. In all my reading about ECT, I never have seen anything even slightly related to dopamine or the sort of restlessness with which you suffer.

A better guess is that the stress of the situation--more the stress of dealing with those horrible doctors than the stress of the ECT itself--meant an extra strain on an endocrine system that already was struggling to work adequately. My guess makes sense theoretically, which I want to say because I am about to offer myself as evidence, and as jenipeni will confirm, using one person as evidence is a shaky thing to do! If I am going to do that, at least I can say that theoretically, what has happened to me and what may have happened to you makes sense.

What has happened to me has been alternating better times and worse times for my thyroid gland (which can be seen clearly in hindsight)depending on two factors: Whether I was in graduate school (where the students were treated very poorly) or I was back in the adult world again, and whether my HRT regimen was one that caused a minimal impact or a strong impact on my thyroid's functioning. An already struggling system can be made to struggle harder because of a stressor, or because of the passage of time, but no permanent damage is done.

I am very, VERY glad if you are feeling my supportiveness and compassion and caring. I think that I know what you mean about needing a family right now, and I also know that sometimes the people you "adopt" as family do better at standing by you, compared to your "real" family.

Tomorrow promises to be a three-ring circus sort of day at work, so if I do not check to see if you have posted any comments, it will not be because of a lack of caring. To the contrary, you will be in my thoughts tomorrow as you go to see the surgeon again.

Sending you a "take good care" thought,
Jenny

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Hi again,

I wanted to update on the visit with my surgeon.  I printed off the most important info to take in that I could find.  Basically, I wanted to know a bit, but hand it off to him.  I took my husband/partner with me.  I was not afraid, as I had resigned myself that I still had two more chances at the new GP I will be seeing that was recommended by the about.com forum, although I don't like his policies on not treating chronic pain--I don't care though.  I addditionally knew that I have an appointment on February 14th with an endo's who isn't affiliated with any hospital, other than using its space.  I spoke at length to the secretary about the fact that I would provide labs, records pertinent to the endo system, but that was it.  I explained that I had been judged and told her my story of endos and doctors.  She understood and told me that this endo didn't want extra records, only the important ones like labs.  I see these appointments as interviews and intend to take a notepad and paper into the visit with me and see if we are compatable.  I think it is important for both the physician and patient to see whether they can work together.  Our system is backwards.  

Here is how the visit with the surgeon went.  I went in with my printout in hand.  I had a written list of symptoms in the margin to remind me of what was up.  We sat in chairs and he came in with surgical scrubs on--I knew he was busy, but he was still nice as usual.  I told him about seeing my PCP and that she was ordering an US of the right breast due to lumps/nodules in that breast.  So, I told him I would have the report sent to him.  That aside, I launched into my views.  I did not lie about my father, but did hint that a nursing student and others that are going through similar problems as I, made me think a little.  Then, I told him that I researched.  He was not threatened and commented once again, that I should be practicing medicine and endocrinology.  I don't believe in myself enough for that and I am too ill, but it told me his ego could take hearing about you guys and my research.  By the way, the paperwork I took never left my hand.  Instead, I chose to engage in a down-to-earth conversation.

I told him about the visit with the PCP and that I had expected no reaction.  He asked if any tests were being run on me, like ACTH, 24 hour cortisol, prolactin, on and on . . .  I told him that I was surprised that my PCP had ordered a 24 hour urine test(presumably for cortisol).  I said that I was unsure but knew that prolactin and a cortisol blood work were on the list.  In addition, a colleage of his (my OB) is ordering LH, FSH, Testosterone, Estrodial, and lipids.  He is conceerned that I am having estrogen-related issues based on the symptoms.  He wants me to chart my cycle 3 times daily for a couple of months checking temperature.  But this was a side note.  I explained to him that my PCP was reserved about ordering an MRI; and that I had spoken to Medicare, being told that if a doctor orders an MRI or any test for diagnostic purposes  and it is seen as "medically necessary," they would pay for it.  He mentioned that I had seen many endos, and he implied they were good.  However, I pointed out that I didn't want to get into the whole endo thing except to say that they fell short of giving proper treatment.  Furthermore, one of them were unethical, taking away my rights to a surgical consult or not wanting to treat my Graves' (with 54%  uptake) and clinical signs that were destroying my life.  I even told him that the doctor who said I could make the decisions about my care, after I tried ATDs (didn't work), came in to discuss getting an order for ablation, and changing my mind to ask for a surgical consult to which she said no.  An order for RAI was written, no dose, and then she terminated me from care for no reason given by mail.  The AMA wanted me to complain at the time, but I was too ill.  I still want to.  She not only said I couldn't see her, but anyway else in both clinics.  That rules out a lot of endos.  I needed him to understand that the endos didn't do their job and were insulting at times, but in a non-threatening manner.  People don't like to hear other doctors bashed, especially when they are doctors.  It was at this time that I explained to him that I believed him to be a smart doctor and that while not an endo, I felt he was more perceptive and caring than the doctors I had come across.  My OB is the only other doc that is like that, and he is friends with him.  Even my OB isn't as good as my surgeon.  I meant what I said about smart.  I didn't need to hand him the print-off.  He mentioned everything Jenipeni did and even added a bit to what I wanted.  

We discussed doing an MRI vs. CT-Scan.  Both have advantages and disadvantages.  But we ended up agreeing that an MRI was preferred.  I know this can be done with something to enhance the quality of the images, but we settled on a normal MRI.  He mentioned that the pineal and pituitary gland could both be possibilities.  I didn't catch this, but he also order a CT-Scan with contrast dye of the abdomen.  He seems to want a look a the adrenals.  He then asked if the 24 hour urine catch was looking for VMA.  He also told me there was a n  I tried to write it down, but I am assuming that Jenipeni or someone can figure out what it stands for.

While in the office, my partner Barry, mentioned that I had this agitation (restless legs syndrome), mainly because he believes perhaps I am having adrenaline rushes.  This next part bothered me a bit, but I was able to adequately control the damage and keep focused.  He asked if it was possible that I could have manic depression.  I told him that it was not a possibility, stating that a pyschiatrist at OHSU had told me he did not think anti-depressants would work on me based on the fact that I had tried all categories, except MAO inhibitors.  After Dr. Mackett left the room, I still was bothered by the manic-depression question.  When he came back in, he wanted to do a repeat breast exam.  I let him do it, because I trust him more than my other doc.  He said that there were nodules in my breasts, but that no side was worse than the other.  He was in favor of the US though.  I took this opportunity to address the mental illness subject.  I told him that doctors have agreed that I do not suffer from manic-depression, and it was important to me that he understand this agitation is accompanied with other symptoms like sweating, etc., and it is not like a euphoric state.  I told him that I go from feeling pretty normal to this non-functional state.  He admitted that he wasn't a psychiatrist, but said he asked only because my records show a hospitalization.  I told him that I understand, but that I believe the symptoms I am having and have for years were a messed up endo system and I did not want to get sidelined.  He was receptive to my concern.

So, the good news is that I actually am going to have all three tests run on the 30th.

Tonight, a chemist I have been in touch with, suggested a possibility.  He wondered if I might be iodine deficient and if I had used Selenium or T3.  I have been supplementing a lot, and so I wanted to consider it, but was also a bit skeptical, especially of Selenium, because I have read it is a toxic element but also at low doses, safe.  But I also have read that if one takes Selenium and iodine deficient, it can cause problems.  I worried about taking iodine at all.  Contrary to what people say, the breasts, ovaries, testes, stomache, salivary glands, and I think maybe more also need iodine.  I actually was thinking I would go out and look for the information and find out that it is not a good idea to supplement with iodine.  An article caught my eye.  I want you guys to read it, because it is about the important of iodine.  That is what got me on here in the first place, but I thought you might want to hear about the MRI,CT, and US.

Here is the link: http://www.lewrockwell.com/miller/miller20.html

By the way, I appreciate the info about ECT.  I still feel that if I am ever well, I would like to make a complaint about that situation.  No one should feel forced like that.  And, this hospital and another one were shut down.  I don't trust the way they did ECT.  But if I am reading you right, it sounds like you are saying that the stress of the doctors forcing this treatment, not treating my pain, etc. probably further add to the struggle of the an already overloaded endocrine system.

Please look over the link I gave you when you get a chance.

One more thing, Dr. Mackett said that he thought a lot of my breast pain might be coming from the cartilage around the area of the breasts.  He explained that blood flow doesn't directly go to the areas like the sternum, but rather it flows from the tissues surrounding it.  He usually treats this by having woman take warm showers or use a heating pad a few times daily to improve blood glow.  He also said that these areas can be inflamed, so he often prescribes Advil or Aleve, and that it can take awhile to heal.  I understand the heat to increase blood flow, but I remember that when I was in physcial therapy, the PT told me that warmth causes inflammation and so I had to ice afterward.  I am wondering if this would happen with a hotpad to the breast--cause inflammation.  I can't take Advil or Aleve.  My PCP recommended Evening Primrose Oil, but I think that was for the lumpiness in my breasts.

There are records waiting for me at my PCP's office.  I was told that my prolactin was "normal."  I did have one other question for you guys.  I still want to hear what you think about my posted labs and ferritn, but I started the 24 hour urine collection today.  Well, today was a good day for the most part.  I was able to leave the house, didn't have sweats, except when I became hot just by eating hot food at dinner.  It bothers me that I am running this 24 hour urine test on a day when I am feeling well.  I think it would be better when my symptoms are out of control.  I wondered if I should just dump the urine and start over after rinsing out the container (it doesn't contain a preservative); or ask the doctor for a new one.  I could just make something up like that the container was punctured only because she is so difficult.  But if it isn't going to matter anyway, then I don't know that it is worth it to start over again.  Thoughts?

I way over-wrote and have so much more to say in response to your last post, Jenny.  I will try to get to it.
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Hi Cheryl

VMA stands for Vanillylmandelic Acid - which is a urinary metabolite of adrenaline.
This is what is says in my medical dictionary
"Vanillylmadelic acid (VMA)/ a urinary metabolite of ephinephrine and norephinephrine.  It may be measured in the urine to determine the levels of the catecholamines (adrenaline and noradrenaline).  A greater than normal amount of VMA is characteristic of a pheochromocytoma (adrenal tumor) and neuroblastomas.  Increased concentrations of this acid may raise the blood pressure and indicate the presence of tumors of the adrenal glands or nervous system, muscular dystrophy, and myasthenia gravis; they may be caused by stress, exercise, or certain drugs or foods."

You could also look it up on;
http://www.aruplab.com/guides/ug/tests/0080421.jsp

I am soooooo pleased for you that the doctor listened, is being thorough and you are getting an MRI!!!!!! Yipee!!!!
I can't keep up with the different doctors you are seeing though-sorry.

I am sorry that lately my posts have been very formal, info and not much chat - I've not been very well :(
I had accupuncture today so hopefully that will do some good.
I did a 24hr free urinary cortisol test on Tuesday too!!! Isn't it fun -NOT! Keep going with it and get it over and done with - don't start again, it shouldn't make too much of a difference.  You didn't get this way overnight, so you won't have gotten better overnight either, even if you are having a better day.  ***Make sure you drink your 8 glasses of water while doing the test or otherwise you might not produce enough urine for a acurate result.

I must talk with you about iodine before I go.  I just posted on another thread the same info, it must be a hot topic.

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Iodine continued...

The choice about iodine is totally yours - but do consult a doctor first - It is true that in some instances iodine supplementation can result in the reduction of goitre. It's up to you to weigh up the risks and potential benefits.

Your last thyroid test levels came back pretty good (just refering to the numbers, not necessarily how you feel) so why mess with it?  

If I was going to try iodine I would make sure I got very regular blood tests for thyroid function - like once a week. My SIL was only taking the iodine for 2-3 weeks for it to tip her hyper. And the reports say that you could go either hyper or hypo.

There's no point in me trying iodine after iodine after TT - as the thyroid is the only part of the body that actually uses it and now I don't have one.


About IRON..
I am glad you have started taking iron as it couldn't hurt and as you said "anything under 50 and you are supposed to supplement with iron".  Do you have a reason for taking only half?  In past experience does it make you constipated?
Iron is well known to be better absorbed when taken with Vitamin C, (take about 500mg).  The incidence of constipation can be decreased when taken with Vitamin C because of the better absorbtion.  You stools/poo will likely go darker or even green but this is normal - just in case you didn't know (you probably did).

When you have low energy a Vitamin B complex can help a bit - it is one of the vitamins that is not stored in the body so you need a daily supply of it and most of us don't get enough in our diet.  One of the best sources is banana's - brain food, yum!!!  (I used to work in a pharmacy which sold lots of vitamins)

I was thinking about trying Selenium too - to help T4 to T3 conversion but it seems my body is doing a pretty good job on its own.  

MMM... Have I told you I am the master procrastinator when it comes to doing things I'm not excited about???  Hence the state of the house hasn't changed yet.  
Off I go now..
jenipeni
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Hi there,

I don't know if you will get this or not.  I was looking over everything you said and I definitely would not use iodine without adequate physician supervision.  But what I wondered is about the information I saw at this link: http://www.lewrockwell.com/miller/miller20.html

I will not use iodine therapy without much study, but I did also read in a book, The Thyroid Sourcebook by Dr. Sara Rosenthal, that other parts of the body take up iodine, acting like a gland.  The breasts, ovaries, testes, salivary glands, I thought something in the instestines or stomache.  So, it is not that I am going to supplement with this, but it was of interest to me that other parts of the body absorb iodine.  I had thought it was only the thyroid.  I do agree that the labs appear to be "normal."  I don't know that iodine will help my thyroid problem.  But I wondered if I might have an iodine deficiency and if it could be contributing to some of the female problems.  I will take a look at the site you posted.  I am sorry to hear of the incompetent doctor prescribing a therapy without also checking the thyroid.  But I would ask that you read the link I posted, because I am always able to understand you and you seem quite knowledgeable about articles and such.  Thanks for the explanation on the cortisol test (24 hour urine).  I was not drinking well and therefore did not produce a lot of urine.  The bottle is only 1/4 full.  So this brings me back to whether or not the test will be accurate.

Hope you feel better.  I understand you must be struggling yourself.  I find all the posts to be very nice here and they don't just appear informative.  I can tell you care as well.

As for the iron, I do become constipated, but I am going to try taking one.  I do use it with Vitamin C to increase absorption.

Keep in touch.  I have to go now and call the doc.  I will look for responses.

Cheryl
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Hi Cheryl
Thank-you for your kind words.  I have glanced through the article you posted the link to.
I have been corresponding with a professor from the
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Hi again,

Thanks for writing back so soon.  I am not going to shoot you.  I am just researching, trying to think of anything that might help me.  Because of the nodules/lumps in my breast, I thought perhaps that iodine might help, but was also suspicious of its use.  I think I already said this, but I went out specifically looking for problems that iodine therapy could cause for someone with previous Graves' and those on T4 or any thyroid hormone therapy.  I ran into several articles.  The article I eventually found kind of surprised me, but I am not one to believe anything written by just one person.  It simply is bad science.  I would have to see evidence that I am iodine deficient and several physician whom I would have to trust would have to agree that it would be beneficial.  That might be tough, because I have little faith in the majority of doctors I have seen.  I do like my surgeon and OB.  However, this is not their specialty and I think they would tend to want to steer away from advising on it.

I need to look over your links.  I definitely agree that one substance cannot be expected to be the cause of all cancers, because we simply live in a world with too many other known variables to affect the human body.  I also thought that it was an awful lot of iodine intake being recommended.  I agree about Susan Rosenthal, although I have found that some people, despite their lack of certain education, seem to have accumulated more knowledge than many of the experts.  An example is that of the thyroidologist I saw at OHSU.  She had practiced for 17 years and yet wanted to do nothing to treat my Graves' disease when I had 54% uptake from the radiologic study.  However, I do worry about some of the sources, many coming from about.com, where these people are writers and are making a lot of generalizations.  I wonder on what they are based.  An example of this is what brought me to worry about having RAI.  It had been written (I don't want to say by whom) that when radioiodine was taken into the body to destroy the thyroid gland, there was an increased incidence of cancer for those treated for thyroid cancer and the implication was that those treated for Graves' in this way might also be at increased risk.  I am not quoting directly, because I have tried to put it out of my mind, but I could find the link.  The contention was that there was an increased risk of breast tissue, the salivary glands, and the small bowel.  I have to look in some of my books to see if I can find any other reputable sources with regard to the iodine use in the body.  Unfortunately, because of my early childhood years and my father, I developed low self esteem and became afraid to read many of the books I had.  I would panic when opening the books and it impaired my ability to function in school.  Another story.  

I need to look over your links some more to gain a more comprehensive look, but I also have to prepare for tomorrow's appointment.  I have decided not to tell any more information than necessary.  I am going to prepare a small history, excluding anything that might bias the doctor.  I will not be revealing any medications that are associated as "psychiatric" in nature and will not bring up therapy.  I have my labs for the last year, so I will not be tranferring records.  For me, this is an interview to see if I want to have this person as my doctor.  I hope he passes his interview.  I no longer have time to see doctors that cannot help me.  And I think that after one, at the most two, appointments, if the doctor isn't a match, probably he or she will never be.

I found your correspondence to be of interest.  I did read about the teaspoon requirement in other literature.  And I also read about iodized salt and both are available here.  My understanding in the United States is that most foods have iodized salt in them, but it is true that this is not always listed on the package.  This topic is still of interest to me, and I will probably continue to research it and might contact the person responsible for the link I gave you.  He is up at the University of Washington.  However, I will not be using my body as an experiment, so do not worry about that.

I do take all supplements at least 8 hours away from my T4, and I am thinking of increasing the Iron to 1 capsule daily.  I am glad you wrote about the urine, but because I did not drink a lot during the day, the person at the lab said it would be okay to collect the urine again.  I am okay with that.  All other labs have come back normal.  I will have to post them.

I guess I have become sort of obsessed with finding the solution to my continued illness.  I am going to discuss adding T3 for an experiment as I understand that T3 levels in the brain can be lower and short of a biopsy of the brain, there is no way to tell about this unless one tries T3 therapy or perhaps Selenium.  I worry a bit about Selenium though, as I have read it can be toxic and am not sure of its affect on thyroid meds either.  I would need a lot of info to convince me to add another supplement to those I am taking.

One thing on the iodized salt.  I read that iodized salt is somewhat problematic as a source of iodine because of something to do with Sodium Chloride.  I also heard that other factors like bromide used as a dough conditioner are adding to iodine deficiency.  It will be a continued study for me, and as ususual, I found your response very informative.  I wondered if you have contact with this person who seems knowledgeable as well if you could ask about this article written that I provided the link to.  I know it is a long article.  I was glazing over when reading it myself.  I definitely appreciate your feedback.  Do not feel like I am going to be angry if you express an opinion.  I asked for it.  So if I can't handle it, then I should not be asking.  Your input got me to get the MRI and even a CT (and bloodwork).  Thanks for your continued conversation.

I am hoping you will do well with your company.  I wish that your mother-in-law would try to understand.  I have the same problem in my family as well.  I will be thinking of you.  Respond when you can.

If you are out there Jenny, I am thinking of you also.  I didn't mean to leave you out of the conversation.  You, too, have been support for me in a truly desperate time.

Thinking of you and until next,
Cheryl
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Hi, Cheryl--

I am indeed "out there," and I am thinking of you, too. Do not think twice about leaving me out of the conversation, because I did not feel left out at all. I was very interested in the information jenipeni provided, and I also was very interested in your update. I am SO glad for you that you managed to convince your surgeon to order an MRI.

If I have been more quiet than usual, it is because--like jenipeni--I am a little knackered at the moment. At this early stage of adjusting to levothyroxine, I have had a pattern of doing well for only about so long, and then the way my symptoms come back again tell me that it is time to increase the levothyroxine dosage level. A TSH level assessment only confirms what I can feel subjectively.

I have been going through that this week, and then a project at work that has a Wednesday deadline attached to it hit a major snag today. Comparing myself to an old jalopy: My bumper is dragging a little at the moment.

All the same, you are in my thoughts, and I am keeping my fingers crossed for you. Take good care of yourself.

Sending you a hug across the miles,
Jenny
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I am very upset after another disappointing exam.  I am going to write about it, but it was an utter waste of my time.  I got up and typed my medical history and symptomology.  I did not have time to eat and had a long ride to the doctor's office.  I had considered cancelling, because there was an isurance issue brought up that I managed to correct, but I wanted to give the doctor a chance.  He had been recommended by some people on another forum as being open-minded, a doctor who didn't rely only on TSH for determination of dose, and who examined the patient rather than the labs.  I arrived a little late and was then asked to complete a series of forms, much of which was a repeat of information from one form to the next.  Furthermore, they had loud music in their office, which did not help with my impaired cognitive ability.  What might have taken a little while for a person feeling okay to fill out, I was unable to complete in a long time.  Interestingly, the music in the background was the song, "You can't always get what you want," and this was definitely true in this case.  I did leave off many of the meds I am taking, and even with this, he still did bring up that I was on high doses of pain medications.  I questioned him on this because Neurontin was the only other med listed and my dose is not high.  I did add that I had actually came off of the Duragesic patch and to the dose of hydrocodone of 45 mg per day and he seemed pleased with that.  He was also pleased and surprised that I was not on a lot of medicines, a sign that my not telling about my other meds was a good choice as I think it would have affected his judgment.  After explaining that Dr. Robert Bennett of OHSU had recommended the treatment for pain, this doctor admitted that he had some patients with fibromyalgia syndrome and said that they were treated in the same manner.  I found this to be ironic.

He read my history, symptoms, and labs.  He concluded that my thyroid was being adequately treated but also stated that my free T3 was on the low side.  I discussed the possibility of adding Cytomel, because I have heard that some do well with a small amount added, but he did not even know that this drug was available nor did he know that Thyrolar was available.  He was not open to this type of treatment.  We did agree on one thing, and that was, that it appeared that the pituitary gland was involved in some way.  It was at this point, however, that I was again troubled by a comment made that my doctors should not be requesting the tests that they were: the blood work, MRI, CT Scan, etc.  He specifically brought up my surgeon when mentioning this but also was referring to my PCP.  I did speak up at this point, at first, saying that I was not trying to defend my surgeon.  But then, actually stating that I was defending my surgeon.  I told him that my surgeon had told me that he was not an endocrinologist.  But I also said that my surgeon, whom this doctor knew and liked, was very empathetic and was simply unwilling to see the problems I was having and do nothing.  I asked my surgeon if he thought I was a problem patient the last time we talked.  He told me no, but he thought I had problems and he felt badly about the fact that I had a family and was going through this.  The doctor seemed to drop the subject after my comments, possibly accepting my explanation.  He then brought up my OB-GYN, asking if he was involved in taking blood tests for my female hormones.  I answered that he was, but also told him that my OB-GYN had told me that I needed an endo and he really could not help with this situation.  I did agree with this physician with respect to this comment:  He told me that my OB-GYN should be involved in this, because the pituitary was part of his specialty.  However, I cannot force my OB to be involved, and it was very hard to get him to run the tests I did.  I had to push hard to ensure the blood work Jenipeni aptly suggested be done was ordered.  I did prevail, but there was discomfort.

In the course of this visit, the doctor brought up an endo that had moved into his building.  Wouldn't you know it that it was a doctor that I had seen before.  I did not bring it up, but I had to bite my tongue.  When hearing that I had gone to Mayo, he suggested that I go to OHSU to their endo clinic.  I don't know if I have brought this up to you, but after finding out I had 54% uptake that was diffuse with a slightly enlarged thyroid gland, I was told by the radiologist I definitely had Graves'.  I went to a doctor at OHSU (17 years and a thyroidologist).  She told me that I should do nothing to treat the disease even though my life was a mess.  Although I did not have the bulging eyes associated with severe Graves', I had many clinical symptoms, including sweating, movement, total insomnia, agitation, itching eyes, a feeling that something was in my eyes, and lid lag.  She told me that I didn't seem happy with her recommendation.  And I replied that I was not, because I didn't see the point of all of the tests to diagnose me to leave me untreated when my life was a mess.  She unwillingly prescribed PTU, but I never returned to the clinic, believing that I could not see such a doctor.  So, without telling the story, I asked this doctor if he would recommend treatment to someone with that radiologic study.  He said that it would depend on the free T4, free T3, and TSH, and clinical symptoms.  I told him that hypothetically these things would fit the exact findings I had in 2003.  He told me that he supposed that a doctor could choose not to treat, but that the consequences would likely be that the patient would endure a lot and eventually the thyroid would probably be destroyed, leaving consequences for the patient.  He said that he would treat.  I then and only then told him that I had seen a doctor at OHSU that wanted to leave the problem and did not think I could return to the clinc at OHSU.  I don't remember his reaction, but I did get the feeling he understood this, at least.

He asked me many questions about RLS, my sleep patterns, and asked about something that I found interesting--Did I chew ice?  I told him that I used to until I developed severe TMJ problems.  That is a big story.  But he said that people that do this often are deficient in Iron.  This is interesting, because my ferritin is considered to be low (under 50) and it is recommended that Iron is taken for RLS sufferers with a reading under 50.  He also mentioned that this can be indicative of wheat gluten allergy, but I know I don't have this because of food allergy testing.

What I wondered is why we were talking since he had already decided that he was not going to help me.  Why did he need to talk with me for 2 hours, while I held my urine and hadn't eaten because of a fasting blood test I needed to have drawn that day.  He did mention a doctor, whom I believe I called but am not sure, that he thought was quite good.  I am going to call him and see if he is taking patients.  I don't think it will hurt to have a back-up.  It was not that this doctor was rude, because he wasn't rude but mostly pleasant, but I just did not benefit from this appointment.  And in a time of my life when I rarely get a good day, this was the closest to what could have been a day to go out and enjoy.  Instead, I found myself upset and crying after the appointment.  I went to get my blood drawn.  The person drawing the blood was also having endo problems.  She listened to my story and also about the struggles I was having because of seeing other docs.  She got out a book and copied the names of some doctors for me.  Some I had seen, but some I had not.  She also said that it was possible that if an endo was unable to help me, I might have to go beyond them to other specialists.  My husband read that often endos have to consult experts themselves, specifically when it comes to the pituitary but not limited to it.  She was the comfort that I experienced in this day and my husband who definitely spoke up at this visit.  He also was supportive after the visit, clarifying that he did not think I was the problem.  He thinks it was that the doctor did not want to deal with it or felt it was out of his specialty.

After I left his office, I told my husband that I would be writing to all of you as you have become my support and he said it was a good thing that I had you.  I am sorry to have gone on, but I think I needed the release and some feedback.

I know I left out a lot of this visit, but I hit the high points.

Hoping to hear from you,

Cheryl

P.S.  I read your post Jenny and I am glad you didn't feel left out.  I hope that your doc is looking at free T4 and free T3 in addition to TSH.  TSH is often not a good indicator and I have experienced normal TSH with abnormally low thyroid hormone.  Just a note to let you know I am thinking of you.  I hope things improve for you and am sending positive thoughts to you, Jenipeni, and anyone experiencing these struggles.
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Hi Cheryl

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Hi AGAIN!!!

Ha Ha!! I pressed post instead of display thread -oops!!!

I'm sorry I am not comfortable to ask the professor about the article which you provided a link for.  I have other questions for him myself to do with my condition.  Personally I don't consider that article to be of good literary value - No references for supporting ideas etc.  The list for recommended reading cannot be considered as references - and this list is not very comprehensive.  I'm sorry about this but as I have explained I don't really believe in this article.

Nor do I have any reason to believe that iodine has other purposes in the body except to be used by the thyroid gland to make thyroid hormone.

If you still have questions about this article, and it seems you do - I don't mean to discourage you.  But you should be the one to articulate the points which you wonder about, and give reference to the article in which you found these ideas.  Others could also be overwhelmed by the length of the article and at a loss as to what you specifically want an opinion on. So please specify what it is you specifically want to know about.

The 'International Council for the Control of Iodine Deficiency Disorders' has a page where you can post question's to an email address.  This would be a good organisation to look at your questions and provide sound advice of higher expertise than I possess.
http://indorgs.virginia.edu/iccidd/
[click link to 'Questions?']

I know that you (like myself) suffer from fatigue and low self esteem.  So it might take you longer to draft your question(s) but YOU CAN DO IT.  Let go of the past, we can't forget all of it but don't let it rob you of your future.
Easier said than done - I know.  But it is possible, I am proof.

I also have family issues (with my family, not my in-laws).  My family will never support me the way I would like.  They will never understand me how I would like them to.  It's much more complex than this but I choose to let it go and not dwell on it because it only gets me down.  There is nothing I can do to ever make them change, and I accept that.
It is still possible to get on and suceed despite of this.  Despite and IN-SPITE of this!!!

I tell you this because I want to impart some hope to you.

My mother in law has gone home now - she is very understanding, she has endured much with her own family and her daughter has a long history of chronic health problems .  I really enjoyed her visit, wish she could have stayed longer.  I thank God for her.

Sometimes things don't work out as we would plan them.  I believe God has a totally different time-line/schedule than we humans.  While you may not have got what you wanted and expected out of your most recent appointment - you did gain something from the person who drew your blood.  You never know, one of the doctors on the list could be one you hit it off with and gets to the bottom of your ailments.  Who knows?  Only time will tell...

Sometimes I think too that we keep hitting the same brick walls until we learn the lesson that life/God is trying to tell us.  And sometimes there is plain just no reason I can think of for why things happen.  I know I have experienced both.  But it is only my faith that gets me through.

Sorry - don't mean to sound preachy. Just telling you how it is from my experience.

I hope you are having a good day.
jenipeni
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Hi,

I am writing a short response tonight.  Thanks for the link to the contact about asking questions if I want for the iodine.  I find that at this time, not by you guys, but I have been given a lot of input that has led me to feel confused.  It isn't that I think it isn't well-intentioned-like the iodine and recently calcitonin, possible damage to the parathyroid glands, possible calcium regulation problems due to having no thyroid gland-but I am afraid it has caused my brain to almost shut down.  

I wanted to apologize for commenting that I hoped your mother-in-law would understand more, Jenipeni, because I somehow got confused.  I wasn't trying to be offensive.  I think it was brain fog when I was writing.  I do recognize that I came across that nurse and was even able to take positive from what was a hard visit to another doctor, but I knew this morning why I was so upset.  I forgot about something that was said to me in that office.  The doctor said that it was clear that I had thyroid disease for years before being diagnosed, but that it didn't matter that it had taken so long for it to be treated.  It did to me.  It has affected so much of my life for such a long time, and  because of it, I spent $20,000 trying to get pregnant.  I succeeded, but I have lost a lot of time with my kids and before my kids.  I think that this hurts the most--the effect it had and continues to have on quality of life.

I enjoyed a movie and my kids for one day today, but I am down tonight.  So, I am going to cut it short.

Thanks for being around,
Cheryl
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Hi, Cheryl--

Thank you for thinking of me in the middle of your highly difficult time. I am very glad for the few little bits of good that came out of your visit to the physician (meaning: the lab tech and also your husband's viewpoint), but I am very sorry that the visit itself was a disappointment. What it takes to find competent medical help would be highly tiring for someone who felt well, never mind what it takes for someone who is barely holding life together.

I am grateful for having an endocrinologist who seems highly competent, and do I ever look forward to seeing him on the 7th.  I want to ask him if it makes any sense that I have come down with still another cold--my third since Nov. 10th, which is frustrating and unnerving, since a cold about once every two years is the norm for me. I am sure my thyroid insufficiency has been making me vulnerable to infections, but my TSH has come down to a low enough level, and my free T4 has risen to a high enough level, that I am surprised not to have a more competent immune system at this point.

In regard to my free T3 level: I am sure it was one of a large bunch of tests that the endocrinologist ordered initially, but TSH and free T4 are the two levels that he (and I) now are tracking over time. I put the "I" in there because the endocrinologist has provided enough education to make it possible for me to make sense of the numbers, and on the basis of symptoms alone, I have been able to predict how far from "okay" both my TSH and free T4 levels have been each time, well before the results came back.

Since I am still working on the project at my job that has a Wednesday deadline attached, and since I now feel pretty yucky from the cold, I am going to sign off after saying that I am VERY sorry by the way your difficult times go on and on.

Before I close, I remembered that you commented on one of my comments, and I do want to follow up with a reply. When you said (in relation to your history of ECT) "But if I am reading you right, it sounds like you are saying that the stress of the doctors forcing this treatment, not treating my pain, etc. probably further add to the struggle of the an already overloaded endocrine system," you were indeed reading me right, although let me add a very important qualifier: I was offering a what seemed like a reasonable guess. When a symptom becomes much worse after something is done to you, such as ECT, and when the something that was done to you does not explain the worsening of the symptom, then the question becomes what other cause of the worsening there might be. The cause that most of us tend to think of much less often than we really should is coincidence. I could imagine, though, that the intense stresses of the situation might  have been the cause, and a more than adequate cause to explain why one of your symptoms worsened.

One last comment: I read your last post just now, and I understand fully why you were so upset by the physician's comment about the length of time during which your thyroid problem was going undiagnosed. I suppose he meant that in terms of damage to your body, it did not matter, which is the way that all too many physicians think, and have I ever run into it myself. Never mind what the patient's quality of life is; we are looked at as if we are robots. Some of these docs should trade places with us for a month or two.

Sending you caring thoughts,
Jenny
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Hi,

I am going to write a post later.  I want to go out with the kids for a bit.  I feel "okay" today and want to try to spend a little time with them.  The feedback was good and I want to add on why the physician's comments bothered me in a little more detail.  My history has still not been posted, so the severity of my health issues have not been readily available for you to see as well as others.  He, however, saw it written down on paper, and believe me, it goes further than what I wrote for him, because I had to leave out a lot of the psychological issues, anxiety, panic, etc. that occurred starting in the early years of my life.

I will be in touch and also have some info that is interesting with regard to your post.

Best to you and hoping you get well,
Cheryl
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Hi, Cheryl--

I am SO glad that you are having an okay-enough day to be able to go out with your kids for awhile! How old are they, if you do not mind my asking?

I also am having an okay day, especially for someone who complained yesterday about having come down with the third cold in a series that started on November 10th. The November cold dragged on for a record-setting number of days, and it never was more than a mild cold; it just took forever to run through its stages. December 31st's cold was not so bad (eight days), and now I think that this one is milder still. Maybe my poor thyroid gland really is getting back up to speed again with the medicinal help it has been getting.

It is a relief to be feeling okay today, because my project at work is about to sunk me under like quicksand. I doubt that I will be back on-line today. I look forward to your comments whenever it is manageable for you to make them (and for me to come back to read them!). For the moment, I hope that you and your kids are having a very good day.

Sincerely,
Jenny
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I wandered in here looking for information for a friend and became very interested in this conversation and the wondering if cortisol values could vary. I recently had pituitary surgery to treat cyclic Cushing's and am here to tell you that YES cortisol values vary, and often they vary so much that you end up with Cushing's symptoms one day and Addisonian symptoms the next. Please find a good endo who knows about cyclic or intermittent Cushing's. I have to warn you that finding this doctor might not be easy, but it is your life we are talking about. And I agree, NEVER give up 4savages. If I can help you with more information, please let me know. But I would suggest you google Cyclic Cushing's or Intermittent Cushing's. There is an excellent Cushing's message boards site, not sure if I could post the address so won't until I know for sure. i really hope this helps. I know so well about being so fatigued that it is impossible to hope, but there is hope and there are people who will support you here and on those other boards, too, if you like.
Good luck!
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Hi,

I had a CT of the abdomen with and without contrast dye.  Then, an MRI of the brain with and without an injection of something.  It starts with a G and I am not going to butcher the word, but it gives a better image.  I am planning on a lengthy post to address issues.

I current have an appt. with a new endo and a back-up endo.  I hope one of them works.  From what I read, Cushing's doesn't sound likely, but I will research a bit more.  Hopefully, some sort of answer soon.  I wanted to point out that when I increase my Synthroid, the breast discharge is very small.  But still, there are all of the other symptoms.   I still have to get more radiologic studies--US of pelvis and MRI of pelvis, because of pain.  Another story.

I had talked about iodine before.  I actually don't think it is of much value once the body has no thyroid.  I do not have one.  But I will say this.  I do believe that it would have been worth a try to use SSKI or iodine therapy to attempt to shrink my goiter and treat my Graves'.  Every patient is different.  RAI was horrible.  The reason I think iodine might have worked on me is because when I was at Mayo getting diagnosed, they injected CT dye.  It was really weird, but I went into remission for 2 weeks to 1 month.  I have read that some surgeons use Lugol's solution or SSKI prior to surgery, when ATDs don't work, and just have had success with some patients that had Graves'.  I read it from some articles from the Mayo Clinic.  

To Jenipeni:  I am in no way endorsing the use of iodine.  I am sorry about what happened to your sister in law.  It sounds like an incompetent doc and like the dose might have been too high.  But if those symptoms were brought on in 2-3 weeks, it seems like she might have been on her way to Graves' anyway.  I write this hoping you don't get mad at me.  It is just that Graves' progresses.  However, I think that there are several things that the article I sent you doesn't take into consideration.  The most important is that Japanese people also consume soy and other goitrigens, plus just more veggies than Americans.  I believe that the soy, blocking the absorption of iodine, might balance things out so that they really aren't getting as much iodine as is contended in that article.  Furthermore, there is a doctor that says the amount of daily intake was figure wrong who argues against the intake of that much iodine daily.

I also read that in one part of Japan, some people were experiencing goiters, although euthyroid according to lab results.  Goiters nonetheless.  

My interest in iodine had to do with its use in treat fibrocystic breasts and it used to be used as a therapy for different things.  I am not totally convinced that the thyroid is the only part of the body to absorb iodine, but I am also not trying to debate it.  I understand your frustration with doctors misusing and not properly treating patients, possibly leading to more consequences.

Anyway, I will post more tomorrow.

To Jenny, my twins are 6--boy and a girl.

Thinking of all of you,
Cheryl
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Hello Cheryl!

Sorry if I came on too strong about the iodine - no I definately wont be getting mad with you.  Just like you I wish I knew some of these things that could possibly shrink goitre years before I had the TT; iodine and T4 therapy.

Wow, twin boy and girl!  I'm glad (and I'll bet your kids are too) that you got to spend some quality time with them.

I am having a CT of my abdomen and pelvis tomorrow.  This is because Cortisol and Testosterone have both come back elevated.  (Although Cortisol not high enough for Cushing's diagnosis).  So we are both on the testing, waiting merry go round. Blah - sorry that's the motion sickness!!!  Hope I didn't get any on your shoes! he he!  
I have been given a referral to a gynecologist, so even though it hasn't been said I'm guessing they are thinking it is Polycystic Ovarian Syndrome - but havn't ruled out everything else yet.  BUT PCOS wouldn't explain the fatigue!  Waiting. Waiting.  

I was meant to return to University this week for 3 weeks clinical placement (which is basically full time work with homework).  Thankfully the Dr gave me a certificate to postpone till feeling better!

THe accupuncturist pretty much summed it up - 'You are plain worn out and exhausted' - Well dur!  Thanks for the insight!! he he 'scuse my sarcasm.

Mertoo -that is very interesting about intermittent Cushing's.  I've learnt something new! Thanks, will google.

Jenny - I hope you met you Wednesday deadline with time to spare and can now relax and put your feet up.

I hope everyone is feeling well today/tonight.  It's bedtime for me now - Goodnight!

jenipeni
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Please make certain, if going for imaging of the pituitary, that it is done in the dynamic protocol. Cushing's tumors are notoriously tiny and often difficult to find. (And in fact, some are never found until surgery!) Using the dynamic protocol, where the contrast is injected as the pictures are taken, ups the chance that the tumor may light up and show itself. This is really important. Ask the radiologist about it. Mine was happy to do it, even though the endo had not specifically asked for this protocol.

Hope this helps and you all find answers soon.
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Hi,

First, to Jenipeni, boy am I glad you aren't upset with me.  I was a bit worried.  We are going through the same thing.  I hope they used proper protocol with my CT and MRI.  CT dye was used with the adrenal diagnostics--they added that on.  And an injection of something was given for the MRI.  I know what it is, but I can't remember how to spell it.


I haven't had a chance to write.


A couple of more possibilities are being considered.  Perimenopause is still on the table, but my FSH does not speak to this on any of the over 4 tests run.  Estrogen and Progesterone could be low, however.  Nothing ever came back abnormal though.  I have no sex drive though and that is not normal.  I am trying to gather together some info to post for others that think they only have three options.  It is bothering me.  I would have tried SSKI first.  When they gave me CT dye in 2003, I went into a remission from all symptoms for 2 weeks to a month.  I just assumed ablation would do the same.  The person who did the most recent CT explain that the iodine is very different, which I knew, but the radiologist who ablated my gland didn't explain other options and that difference.

I can only hope for normalcy.  Dysautonamic function is being considered.  Orthostatic hypotension has been mentioned.  I feel a bit inundated.  Would a neuro be a good doc to bring in for these things.

I don't think it is menopause.  I had these symptoms long before Graves' was diagnosed.  I do believe something that keeps the body's temperature regulated is out of whack.  Hypothalamus, pituitary, pineal, adrenal, or something.  These things could be throwing the female hormones off.  I am afraid of HRT, because my mom was on HRT (she didn't even want it) and 1 year later, something was seen on her mammo.  Six months later, bigger.  Six months later, bigger.  After 3 years watching, they said it was cancer.  They had been increasing her HRT dose the whole time.  The cancer was found to grow rapidly in the presence of estrogen.  I think there is a good time to replace though.  With the focus on my breast though, I am worried, but I want to be normal.  But the thyroid can cause sexual dysfunction.

I was reading over some of my records, and I noticed that on one of my endometriosis surgeries, it was noted that there was scarring around the appendix.  Nothing else mentioned.  I researched, because I wondered how many surgeries I was going to endure.  Some docs do better and recurrance isn't as probable.  I found a doctor that uses some different techniques.  He mentions that often he does a laparascopic/laparatomy (one of two) with the patient awake.  Using pain mapping, he stimulates different areas (appendix for example).  He has found that often there is low grade infection in the appendix that is missed.  Upon removal, he has seen an elimination of pain.  I have lower right quadrant pain off and on.  Hope it is not appendix.  He also uses newer techniques to help prevent scarring, promote healing, and help minimize surgical intervention.

I know there was more I wanted to say, but I am exhausted.

Good night and I hope you get some answers too, Jenipeni.

I will write again when I can.

Cheryl
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Hi, friends--

I am having an unwell day, but I wanted to check in briefly to let you know that I am thinking about both of you.

Even though I am feeling poorly today, I am feeling relieved that my employer and I did meet our deadline yesterday. I am especially relieved because the project was a relatively large one. Thank you for your very kind deadline-related wish, jenipeni. As is true when Cheryl expresses concern about my well-being, I am deeply touched that you were thinking about me despite the fact that you are in the middle of very difficult times.

Today is your day for CT scans, right? I hope that you did not have any sort of difficult preparation, the way a person does before some medical tests. I once had an abdominal ultrasound with special attention to my liver, and I am pretty sure that the instruction was "nothing by mouth for twelve hours"--not even water. That sort of regimen is enough to make even an entirely well person feel unwell.

I was thinking of you yesterday, Cheryl, with the same sorts of thoughts. I hope that the tests (and possibly the preparation for the CT) were not taxing.

On Sunday, at the end of the day, I thought of you with a hope that you had had a good day with your kids. Six-year-olds can be a lot of fun, but they also take a lot of energy, so I feel for you in regard to what I am sure is a huge amount of frustration over your physical limitations.

I am going to sign off now, since I have the feeling (which I may have mentioned before) of being like an old jalopy whose bumper is dragging. Yesterday's deadline-meeting day was a very long and hard day, and since I am still getting over a cold, it was a bit much. A year ago at this time, I could have handled that sort of demand on my energy.

Now, I simply cannot, and yet, four and a half months after starting levothyroxine, I am doing SO much better than I was this past summer that I would feel guilty to complain. I make it a point to remember that even though--for me, at least--the process of getting better often seems like two steps forward and one step back, two forward plus one back still adds up to progress.

Thinking of you both,
Jenny
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Hi,

A quick note. I haven't been able to write.  When I feel well, it goes to the kids or to get out.  I am still awaiting test results.  The sweats started a bit today.

Anyone have any thoughts on how to help my lack of sex drive.  It is affecting my partner.  I  don't like it either, but I am more bothered that he is.  I am asexual  I have only been this way one other time and that was when I was lactating.  But that made more sense.  I am stressed, because I feel like there are not any answers.

To Jenny (Empathetic)--sorry you haven't been well.  It is interesting to me that you get colds more often also.  I have had at least four colds since September, if not more.  One drug on for a month.  Usually, at least a week or more.  It happened after treatment for Graves'.

I never really asked.  Do you have a thyroid?  What is the exact diagnosis?

I wanted to pass along something.  I don't know that it is true, but I read that estrogen can cause the necessity to have an increased amount of replacement thryoid hormone.  I don't have the link, but I was researching for myself and thought of you.  I thought it might be interesting for you to ask the endo about it.  It is possible that I will have to take HRT, so I would be interested as well.  Anyway, thinking of you.  I will try to write again later.

To Jenipeni--I hope your testing is coming along. Keep me posted on your tests.  I am also thinking of you.

Cheryl
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Hi Cheryl & Jenny
Firstly..
Yes you are right Cheryl - estrogen can cause a increase in requirements for thyroid replacement.
Here is a link;
http://www.thyrolink.com/servlet/PB/menu/1267470/1267470.html

The prescribing info for my brand of thyroxine states;

"In patients with a nonfunctioning thyroid gland, estrogen may increase the serum thyroxine binding globulin, therefore generating an increase in thyroxine requirements"

This will make no difference if you have always been taking HRT or Contraceptives since you began taking thyroid replacement.  BUT if you begin HRT or contraceptives after starting thyroxine (and alternatively cease taking these) you will need to have your thyroxine dose monitored because there will likely be dosage adjustments required.

Just like Cheryl I am waiting on results of my CT scan - won't find out till next week some time (I'll keep you posted).  Yes Jenny, I had to fast and the contrast solution I had to have the hour before tasted awful and made me want to gag!  Then they gave a injection of some type of radio opaque iodine - which gave me a funny taste in my mouth and made me feel all hot in the groin area - if they didn't warn me I would have though I was wetting myself! LOL!!!  OVerall not too bad though - all that I'm going through will give me more empathy for the patient's I will nurse in the future!  

Oh and the contrast solution contained high levels of sorbitol - which can also act like a laxative in some people, lucky me!!!!

Hey Cheryl if you come up with a solution to no libido please tell me!!!  

Today was pretty warm here BUT tomorrow and the next day are going to be worse - 38 degrees celsius (100 degrees farenheit I think?)!  I hate it when it gets much over 30!!! Blah!

Just thought I'd share what I do in the cooler months to keep cold/flu's away (it works for me) - all I do is take zinc (30mg) and vitamin C (1000mg) supplements (seperately) every day.  Years ago when I worked at the pharmacy I got sick all the time before I started this routine - and I was serving sick people all the time.  After 12 months I started the zinc/C supplements and it made such a difference - I actually accumulated sick leave instead of running out of it!!!

Also if I feel like a sniffle is coming on (or if I actually get a cold/flu) I increase the Vitamin C to 2000mg for the period that I feel unwell.  

I gotta go now before i turn into a pumpkin!
I hope this post finds all who read it well!!!
Jenipeni
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Hi, friends--

Cheryl's comment: "I never really asked. Do you have a thyroid? What is the exact diagnosis?" made me realize that I never thought to volunteer the information. Yes, I do still have my thyroid gland. In fact, when I saw my endocrinologist the first time and he examined me, there was nothing that suggested a thyroid problem to him. Still, lab test results warranted a diagnosis of subclinical hypothyroidism. Soon after, symptoms began to warrant the diagnosis, too. I am in harmony with something I read. It was a comment from an endocrinologist, who says that most patients who warrant a diagnosis of subclinical hypothryoidism do not seem subclinical at all, once a careful medical history is taken. He favors the term "mild hypothyroidism," and I would prefer that label for myself.

I do not have antibodies, so what is the culprit behind my problem? Age could be it; I am 56. A possibly more-likely culprit is having had radiation treatments for acne in the late 1960s when I was still in adolescence. I remember the dermatologist telling my mother that the treatment had become slightly controversial, but he used a low dose and thought it was safe. There was NO shielding of my neck, however; I would have remembered that. At least in the part of the U.S. where I was living, I was well into adulthood, the first time I was about to be x-rayed and was given a lead apron to shield my reproductive organs or a lead collar to shield my thyroid gland.

Cheryl, I feel for you in regard to colds. When you already have a bunch of miserable endocrine-related symptoms, it is like insult to injury to be dragged down by a cold. I am sure that our common cold woes are endocrine-related (along with the influence of having two six-year-olds in the house, for you!). Before I began taking levothyroxine--which was a time when I was doing a lot of self-education--I remember reading that the thyroid gland is vitally important to proper immune system functioning. I also have seen "frequent infections" as one of the symptoms of hypothyroidism.

I appreciate your advice, jenipeni! To my great frustration, dosing myself routinely with Vitamin C and zinc has had a zero amount of impact on my vulnerability to colds.  I KNOW it is my thyroid gland's struggles that are at fault, so at least there is hope on the horizon that my immune system will return to its formerly strong state as my thyroid gland becomes better and better supported.  I say that I KNOW my recent colds are thyroid-related because the first one, which started on November 10, went through its stages at the speed of glacier even though it seemed like a mild cold from the start. It was a record-breaker in my life; never have I had a cold that was with me for as many days as that one was, and at the same time, I had a vaginal yeast infection that went on and on and on.... The second cold, which was a New Year's Eve gift, ran through its stages at a normal pace, and my current cold has been a bit less taxing still.

I know that my thyroid problem is at the mild end of the scale, but there is an oddly punishing quality to hypothyroidism, isn't there? When I am feeling unwell, it is never just one symptom at once. It is more like a Chinese menu--one from Column A, one from Column B, and so forth. Then the way a pooped-out thyroid gland can affect a person emotionally simply tops it off.  My fourth levothyroxine dose increase (from 50 mcg. to 62.5 mcg.), which occurred three and a half months after starting the drug, gave me back my usual emotional resiliency. I knew that my resiliency was not what it usually is, but I did not realize how utterly gone it was until I got it back in full.

Even though I am better able to roll with the punches again, I appreciate your sympathy, Cheryl! Supportiveness from other people is what gets us through difficult times that can feel like almost too much to get through. I know how fortunate I am in having a mild problem that is responding to treatment, but it can make me unwell on a level I have never known before and completely tax my ability to cope calmly. I DO appreciate your concern.

Regarding estrogen and the thyroid gland, your jaw may sag, jenipeni, when I tell you that the prescribing information you quoted is just plain wrong. My endocrinologist has provided me with a lot of education, including an explanation of the Law of LaPlace. Apparently, LaPlace was the person who discovered that estrogen and thyroid binding globulin (TBG) are predictably related. When estrogen goes up, so does TBG, thereby reducing the woman's level of free T4. That is as true for someone like me, whose thyroid gland was almost doing a fully competent job--but not quite--when I was diagnosed, as it is for someone with a nonfunctioning thyroid gland.

The upshot is that for someone like me who seems to need an estrogen medication, or for you, Cheryl, if a decision is made to have you start HRT, an increased amount of replacement thyroid hormone is necessary, just as you said.  As usual, jenipeni's explanation was precisely on the mark. The drug company should hire you, jenipeni, to critique the information in their package inserts!

I am sorry to hear that the testing preparation and aftermath were about as difficult, jenipeni, as I had feared. It is great that you can make lemonade out of the lemon by viewing the ordeal as an empathy-builder. You will be a fabulous nurse, I have no doubt.

As both of you wait for test results, I am thinking of you often.

Sending hugs across the miles,
Jenny
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Hi,

Quick note.  I wanted to say hi.  I have been spending make-up time with my family and cat.  I made a decision that to many might seem to not be a good one.  I decided to allow myselft to indulge in one small cup of homemade expresso.  I plan to use decaf.  I have laid off of everything for so long and my restless legs syndrome didn't improve at all.  It is funny.  It did not make me nervous, increase restless legs syndrome, or insomnia.  I have to allow for some enjoyment.  I also allowed myself to have a very small amount of red wine.  That won't be happening for months again, but I felt some indulgence was warranted for me.

Tomorrow, I find out the results of my scans.  I called my OB to get my blood test results, which have been in since January 27, and they could give me numbers but with no range (helpful).  I requested a full copy and I will ask the lab for reference ranges.  It bothers me that probably everything will show normal, when it was pointed out my mertoo that there can be ups and downs with Cortisol.  I never heard back on the results of the 24 hour urine with VMA added.   I will call tomorrow.

As for the estrogen, I knew I had read the connection, but I read that dosage might have to be adjusted periodically if on HRT.  I was a little unsure of why the prescribing info Jenipeni provided was wrong as pointed out my Jenny (brain fog I think), but I will quote it so I can ask my question:

The prescribing info for my brand of thyroxine states;

"In patients with a nonfunctioning thyroid gland, estrogen may increase the serum thyroxine binding globulin, therefore generating an increase in thyroxine requirements."

My confusion lies in that it seems that they are saying that estrogen might lead to increased need for thyroxine.  It appeared that EmpatheticJenny was echoing this in the post.  Perhaps, it is not a might but an absolute.  Or maybe I am just tired.  Sometimes I can't think.  And I am sick again.  Fun.

Like EmpatheticJenny, Vitamins do little good for me.  I have tried everything.  I firmly believe it is the thyroid.  Although this history is not complete, I want to post it.  Many people who are eventually diagnosed with Graves' describe going through hypothyroidism.  This was the case for me.  I know I was hypothyroid.  I did eventually have autoantibodies, but they were considered within the "normal" range.  The endo I had, while I dislike her, told me any number along with the I-123 uptake scan, was not normal.  I did wonder how any number of the antibodies associated with attacking the thyroid could be normal.

Here are my symptoms and history:

Symptoms

Temperature fluctuations from cold to hot.  Drinking warm liquids can bring problems.
Sweating with chills-first feel hot and then feel freezing from sweats
Hands and feet often cold
Low body temperature
Low blood pressure
Lack of appetite, weight loss, difficulty gaining and maintaining weight
Milky/clear discharge from breasts-this is new since developing hypothyroidism sometime in 2004 after RAI.  Breast pain/lumpy breasts.
No sex drive; painful sex and vaginal dryness
Insomnia-feel most awake at night; generally feel
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Hi,

Quick note.  I wanted to say hi.  I have been spending make-up time with my family and cat.  I made a decision that to many might seem to not be a good one.  I decided to allow myselft to indulge in one small cup of homemade expresso.  I plan to use decaf.  I have laid off of everything for so long and my restless legs syndrome didn't improve at all.  It is funny.  It did not make me nervous, increase restless legs syndrome, or insomnia.  I have to allow for some enjoyment.  I also allowed myself to have a very small amount of red wine.  That won't be happening for months again, but I felt some indulgence was warranted for me.

Tomorrow, I find out the results of my scans.  I called my OB to get my blood test results, which have been in since January 27, and they could give me numbers but with no range (helpful).  I requested a full copy and I will ask the lab for reference ranges.  It bothers me that probably everything will show normal, when it was pointed out my mertoo that there can be ups and downs with Cortisol.  I never heard back on the results of the 24 hour urine with VMA added.   I will call tomorrow.

As for the estrogen, I knew I had read the connection, but I read that dosage might have to be adjusted periodically if on HRT.  I was a little unsure of why the prescribing info Jenipeni provided was wrong as pointed out my Jenny (brain fog I think), but I will quote it so I can ask my question:

The prescribing info for my brand of thyroxine states;

"In patients with a nonfunctioning thyroid gland, estrogen may increase the serum thyroxine binding globulin, therefore generating an increase in thyroxine requirements."

My confusion lies in that it seems that they are saying that estrogen might lead to increased need for thyroxine.  It appeared that EmpatheticJenny was echoing this in the post.  Perhaps, it is not a might but an absolute.  Or maybe I am just tired.  Sometimes I can't think.  And I am sick again.  Fun.

Like EmpatheticJenny, Vitamins do little good for me.  I have tried everything.  I firmly believe it is the thyroid.  Although this history is not complete, I want to post it.  Many people who are eventually diagnosed with Graves' describe going through hypothyroidism.  This was the case for me.  I know I was hypothyroid.  I did eventually have autoantibodies, but they were considered within the "normal" range.  The endo I had, while I dislike her, told me any number along with the I-123 uptake scan, was not normal.  I did wonder how any number of the antibodies associated with attacking the thyroid could be normal.

Here are my symptoms and history:

Symptoms

Temperature fluctuations from cold to hot.  Drinking warm liquids can bring problems.
Sweating with chills-first feel hot and then feel freezing from sweats
Hands and feet often cold
Low body temperature
Low blood pressure
Lack of appetite, weight loss, difficulty gaining and maintaining weight
Milky/clear discharge from breasts-this is new since developing hypothyroidism sometime in 2004 after RAI.  Breast pain/lumpy breasts.
No sex drive; painful sex and vaginal dryness
Insomnia-feel most awake at night; generally feel
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Hi, Cheryl--

I am SO sorry to hear that you are sick again! A malfunctioning thyroid gland can do that, for sure, and then being sick tends to drag down a person's morale that much farther. For me, being sick also adds to my brain fog.

With those thoughts in mind, I am not surprised that I confused you with what I said about estrogen. Let me see if I can explain more clearly than I did before. The explanation is related to free T4. If there is a certain level of free T4 at which a person feels her best (which I think is true), then beginning to take estrogen will create a need to increase the person's thyroxine dose. It is an absolute, in a sense, not a "might," because any increase in estrogen causes an increase in thyroxine binding globulin or TBG. What the globulin is binding (and therefore making non-free for the body's use) is T4. Apparently, this relationship--where an increase in estrogen increases TBG and a decrease in estrogen decreases TBG is as predictable as the sunrise.

I hope that this helped. You have been having such difficult days that I do not want to leave you confused. Your history is the history of someone who has REALLY been through tough times in a big way. I think you were scheduled to get some test results back today. I am crossing my fingers that something enlightening or helpful came out of that.

Caringly yours,
Jenny
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Hi Cheryl and Jenny

Just a quick note (I only have 10 minutes) I've been a bit quiet because my CT results are not definative - I have uterine fibroids and mildly enlarged ovaries BUT on a positive note everything else appears normal.  That is apart from the high testosterone and cortisol.  More tests are required but the GP is handballing me on the gynecologist.  He suspects PCOS but the diferential diagnosis is possibly Cushing's.

Uterine fibroids are associated with decreased fertility - as is PCOS!  Don't really want Cushing's either! Blah!!!

When discussing all this with hubby, he suggested that we should possibly start trying for a family sooner than planned.  There may be sense in his suggestion, and fertility does naturally decreased past the age of 35 (in women).  BUT I don't feel ready for kids yet - my health is not as good as it should be for one and I want to finish my degree and work a couple of years first!!!

Anyway when served with lemons, make lemonade!  I'll just have to use it as extra motivation to try and shift the extra 25kgs I'm carrying around :(
I just wish I had more energy to do this... I hate being this heavy, until 4-5 years ago I had always been very slim.

This is all getting me a bit down - there's no proper diagnosis yet and it's all unfinished business hanging around.  It gives me empathy for your situation Cheryl - though I havn't nearly been through all that you have.

Jenny, I totally agree with your take on the estrogen thing.  And when you think about it - it shouldn't matter whether you have a functioning thyroid or not because the medication compensates for that.  

Time's up - gotta go or I won't make it to my accupuncture appointment on time.  I think it is helping some - but couldn't be 100% sure.  This might be the last time because I can't really afford it and work didn't give me any hours next week (there was a misunderstanding, I'm not in trouble).

Oh by the way - I must make an apology to you guys.  I made a mistake as I was unaware - iodine is actually being widely researched with the link to fibrocystic breast disease.  Very interesting don't you think?

Really gotta go now...
Hope you are both well.
Jenipeni



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Hi guys,

Well, the results are in and no tumors were found on either the pituitary, adrenals, or any gland.

With respect the my breasts, the right breast shows non-clustering microcalcifications with a rounded appearance.  There are also multiple cysts and microcysts in the right breast.  My mom is a breast cancer survivor and I am a little worried even though the radiologist said everything was fine.  Three years before my mom's breast was removed, she also had something show up on her mammogram, a microcalcification--just one.  They said everything was fine.  They watched her every three years and the cancer had grown in the exact same spot that was fine until one doctor said (as three were arguing), "This is cancer."  It is with this in mind that I want further studies of my breast done.  Two procedures-a ductogram and ductal lavage-should be considered in my opinion.  The notes from my mammogram say that because of the density of my breast tissue, it is possible a lesion could be present.  I am aware that there are radiologic studies, and I believe, gamma ray breast imaging was mentioned.  But I am not sure about the last one.  I want my mom to come in with me to discuss this.  I feel like the doctors think I am having fun with this.  I don't want to avoid a procedure because it is painful.  My mom was in pain for 6 months after they missed her cancer, which grew rapidly in the presence of estrogen.  Then, they had to put her on Tomoxifen for five years putting her through chemically-induced menopause.  She can never take estrogen again.

I love my surgeon, and I am thrilled that no tumors were found.  I don't want that.  But something is going on with me.  I am afraid to start estrogen until an endocrinologist has been brought into the picture.  I see one on February 14.  My OB-GYN has not called me with the results of the female hormone panel despite a couple of calls.  I requested my records and I hope they will be here soon.  My surgeon thinks that I might need some estrogen, perhaps in the form of cream.  I gave him what I showed you guys, because he asked me if I wanted him to call my OB-GYN.  I wanted him to have all of the symptoms.  What is weird is that my OB-GYN did not want to give me hormones and felt that they had nothing to do with my problems.  I have a lot of respect for him also.  I don't agree with everything he says, but who does.  We are people.  I have to believe that he thinks something is up in the endo system.  But you know, the last endo I saw told me that none of the symptoms I was experiencing had anything to do with the endo system.  He is full of ****, but you can see why I didn't go back.

The 24 hour cortisol with VMA came back within normal range.  My prolactin also did.  On a side note, I went to see my psychiatrist.  She is not my favorite, but I wanted to know what she thought of the breast milk production and lack of sex drive.  I told her my prolactin was normal.  She told me that, in her opinion, if I am leaking breast milk, prolactin is too high for me.  She said that my body has always been a little different when it came to everything.  But this prolactin was really low.  I asked her how she would treat it if she were going to.  She said she would prescribe Bromocriptine (think I spelled that right).  Below are the results that my doctor was "happy to report."

ACTH, ARUP    19 pg/mL   range (6-58)
Prolactin     3.8 ng/mL  range (2.8-29.2)

I am frustrated and yes depressed now, because I hoped that something would give me some answers.  It reminds me of this Plymouth Reliant I had.  Every time I took it to the mechanic and they hooked it up to diagnostic machines, everything came back normal.  After several frustrating events, it happened on my way out of the lot one day.  I went back and asked if everything was normal.  The mechanic laughed and said no.  They have felt, seen, and heard the symptoms.

I believe the chances of tumors in the brain or adrenals are not likely, but what I wonder is if there can still be a problem, but it just is in its infancy stages so to speak.

By the way, thanks for the explanation Jenny.  That is what I thought you meant.  I knew about the binding.  It apparantly is also important that people have proper ferritin levels, but not to take them near to the time of taking thyroid replacement.  I am considering asking the new endo if she will try T3 with my T4 in a low dose.  A lot of people have had success with this.  Something is messed up with the Hypothalamus/Pituitary/Adrenal Axis.  I know my thyroid meds are not optimal, despite normal reads.  The reason is that when I made the minor adjustments, I noticed a gradual improvement, reduction in sweating, increased functioning, and lower discharge from the breast.  Not to mention that I have been able to interact with my kids.  

I am down though.  Again, I don't want tumors.  I want answers.  They didn't listen to me before any of the surgeries that I needed. I ended up with a gallbladder the size of my liver with a thick skin on it.  The last stone (it was filled with them) got caught in the common duct.  This caused the surgery to be over 2 hours long, instead of the normal 45 minutes.  The had to make an incision to allow the last stone to pass out of the common duct.  I was lucky I didn't have to get the long cut.  Another doctor beleived me and sent me to the ER.  I was breastfeeding twins at this time.  I had experienced over 9 attacks, but all of the doctors were dismissive even though almost everyone in my family has lost their gallbladder.  Twin pregnancy and pregnancy increase the chance of this problem as well as thyroid disease.  With my history and symptoms, lots of things should have been caught.  But I just want a life now.  I want to feel the way I felt much of the last week.

There is a lot more I want to post on here, but not tonight.

To Jenipeni, it is interesting about the iodine therapy for the breasts.  It has been around awhile.  I feel for you with the difficulty in wanting children, but not feeling ready.  The only thing I can tell you is I went through a lot of fertility procedures.  If someone had told me that this is how sick I was going to become, I would have had my sister carry the baby.  I did want to say that you should not feel like you have to start tomorrow.  Yes, it is true that women have more difficulty after 35.  But health issues can also cause problems as in my case.  So, try to give yourself some room.

I am going to post more about the radiologic reports, but I am also making the daring move of posting my email address.  I get a little lost on this site.  There is also the option of using about.com's site.  It has more options, but it can be confusing as well.  Here it goes.  My email address is ***@****.  I know I am not supposed to do that, but I am taking the risk.  My depression is bad and I don't always have the energy to get on here and search around.  Also, I would like to scan in all of my reports and labs and possibly let others take a look, specifically you Jenipeni, since you are going into the medical field.  But I also would be interested in anyone, like Jenny, who is very intelligent and possibly knows more than the doctors.  I mean that.

Be in touch at least on the board.

You are in my thoughts,
Cheryl
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One more quick note.  You mentioned a Law of LaPlace.  Is there a link you can lead me to for that.  I want to research a bit more.  This seems logical to me and I wonder if there could be a connection for me if my estrogen is fluctuating especially in an abnormal pattern.  I got too many hits when I searched and I am looking for that info specifically.

Hope you are well.

Cheryl
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Hi Cheryl & Jenny
Firstly thank-you both for the confidence you have in me - but all I have done is pass on information that others have written and researched.  I don't think I can offer assitance with your radiologic reports/test results Cheryl- as a nurse we aren't taught diagnoses and it is not an area I have had any experience in. Sorry.

Cheryl I empathise with you that while you don't want terrible news from your test results, you still want to know what's going on so it can be fixed.

Next week my hubby is having a carpal tunnel op and the week after I am back at uni.  Being my final year there will be a lot of stress and a huge workload, I must start studying now.  So there are busy times ahead and I have to plan on scaling down my time on the forum.  

In no way will this be my last post or anything but I just won't be around very often.  I'm sure you'll both understand.

I wish you both happiness and health!
jenipeni




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Hi,

Really short note.  I understand you not being able to look over the diagnostic reports Jenipeni.  I hope everything goes well with your husband's surgery and your endeavors.

I will try to be in touch again.  I am glad you understand my frustration in wanting to know what is wrong.  

I will keep an eye out for you.

Any thoughts on how to approach the new doc with all the normal tests but awful symptoms.  Hi to both of you and I hope you are feeling okay.  Anything new with you Jenipeni?  The tests?  


Thanks and thinking of both of you.

Cheryl
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Hi,

Well, after much waiting for a call back from my gynecologist (since January 27th), I heard from him tonight.  He said that my testosterone levels were low.  From what I remember, that is opposite what Jenipeni is experiencing.  I wondered if this could account for all of the symptoms or just some.

I had a friend that had a problem where her body was converting estrogen into estrogen.  I wondered if somehow there could be a connection between these two hormones.  I know nothing about this.  But I wondered if my testerone is low, could there be any interrelationship with estrogen levels going up and down.

Anyway, the gynecologist wanted an endo to deal with the testosterone issue.  I told him that I did not yet have one, which is absolutely true, and that I wanted to start some sort of replacement if it were necessary.  I am hoping everything goes well with the new endo and I do have a back-up.  My gynecologist appeared concerned not so much with my recent breast imaging, but with that from 2 years ago showing a dialated duct.  He, however, wanted to defer to his colleague, my surgeon.  Perhaps some answers will be found.

I asked about estrogen, and he did say that the ups and downs in temperature can produce the temperature regulation problems--one minute hot and the next sweating and then chills.

I am praying for some answers that will lead to solutions.

By the way Jenipeni, the only reason I wanted anyone to look at some of my radiological reports is because I didn't understand some of the wording.  It was more of a definition thing.  I hope I didn't make you feel uncomfortable.

I am going to move this thread.  It will be called Needing advice and some response, but I am restarting it.  It has become to difficult for me to locate it.  

I hope you are both feeling okay and hope to hear from you.

Cheryl
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Dear Cheryl & jenipeni,

I feel the same way jenipeni does when she looks at Cheryl
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Hi there,

I have to read your post with a more fresh mind.  It is clear to me that testosterone (low) is involved at this point.  What I worry about is adequate replacement.  Less is known about Testosterone replacement in women.

I undestand not always being able to be available.  With my kids, I also, will be more busy.

It is frustrating to not have an answer, but the testosterone did show through.  In addition, vasomotor symtoms (symptoms) are associated with female hormone problems.  My absence of libido and aversion to sex go along with the testosterone issue.  

I want to write more, but I am tired.  If I get you right Jenny, as estrogen goes up, this TBG also does.  What I am taking from it is that your thyroid hormone binds and so you have less active hormone (free T4).  I wonder if simple fluctuations in my body could be causing the same reaction.  It would explain the ups and downs.  I would be interested to see what Jenipeni thinks about low testosterone.  I know you aren't a doctor, so I am not pressuring you, but sometimes a thought helps in ways we don't expect.

I am thinking of both of you and hope wellness will reach all of us.

I will try to write more tomorrow.  I will check off and on for you guys.  Thanks for the kind words, thought out writing, and good vibes for the new endo appt.

I moved this thread and I hope you will notice it.  It is on page 1.  I have difficulty finding our thread at this time.
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Well,

Long story short, this endo is definitely not going to be helpful.  She came right out and told me that she did not see what she could do about my sweats with chills, seemed to think everything was fine based on my labs and mainly TSH.  She also said that she didn't see where she could help with hormone (female hormone) replacement.  This is a short version of the appointment.

I have been extremely upset, and that is putting it mildly, before and after that appointment.  I have been hanging in there for a long time, but I really feel that if this is the life I have to look forward to, I am not strong enough for it.  I called my OB-GYN.  After a lot of thought and correspondence with my surgeon, he believes that I might be going into ovarian failure.  He says that my testosterone is definitely low and my estrogen is particularly low for someone who is 36.  Now the decision is how to replace.  There is a lot more to this.  I was in his office for almost 2 hours talking with him.  He was at least concerned and had put thought into this.

Where I am right now is in a place I have never found myself.  I couldn't find the area where I started a new post, so I thought I would post here.

I might not be around.  I haven't cared about much of anything lately.  I have appreciated having the support I was able to get.  At the end of the day, I feel so alone.

I do hope you all are doing well.

Cheryl
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Dear Cheryl,

I am sorry your appointment with the new endo was not what you were hoping for.  

What I say next may come across quite bluntly but I don't know of a gentler way to say it.  Please just make a choice out of your current doctor's caring for you - Cut down to only one or two at the very most.  Doctors are not terribly good at communicating/co-ordinating care between other health care professionals (Ego?).  The other thing is that when you see many doctors, they begin to be a bit wary of you - thinking you could be doctor shopping.  

Besides - you will get better continuation of care seeing one regular doctor.  Your OB-GYN sounds like a good one to stick with...  hormone replacement looks promising?  Fingers crossed for you.

The new post you started has moved to page two (I think, could be page three by now?).

I have been away longer than anticipated - I had to go to our home town (3 hours drive away) to get hubby to the dentist and ended up staying 2 days instead of 1.  The day before his carpal tunnel was done he lost a filing.  I had an overdue checkup and found one of my filings had cracked so I must either get a crown or have it pulled.  It's one of my molars, and I've had a few pulled already and think I should keep this one (for chewing's sake) IF we can come up with the $1300 for the crown : (
It was nice to get away and stay with family anyway.

I don't see my gyno until March, so no more news on that front just yet.  

Cheryl, are you still taking the Remeron?  I hope you are.  If you are still on the same dose and feeling so down please see your doctor to review your dosage.  

I reviewed what medications you are taking (posted 1/21/2007).  Valium and Klonopin are both benzodiazepines (class of drug, you may be familiar with).  By Australian standarards you are taking a very high dose of Klonopin-but surely the prescribing doctor had reasons for this. Interestingly One of the adverse reactions of benzo's can be decreased libido.  Usually benzo's should only be prescribed for short periods and used with caution for someone who suffers from depression or psychotic disturbances.

I have some homework for you;
Go to:

http://www.rxlist.com/

Now look up each of the medications you take and print out the information.

I think you may find that some of your symptoms such as fever (which covers your sweats and chills) are a side effect or adverse reaction to some of your medications.

See what you think...

Anyone with chronic health conditions should have their medications reviewed by their doctor regularly - maybe it's time to do that.

I start uni again this week and with all that's happening, I am still trying to get myself organised.  We are in for some very hot weather the next few days so at least I'll be forced to stay indoors and hopefully get things done.

I hope you feel less alone by getting this message.  I have logged on for a quick peek a few times but didn't have the time to post.  Still thinking of you though.

Please be pro-active and make an appointment to review the Remeron and perhaps all your other med's too.
Remember; Tommorrow will be a new day and you can leave this one behind.
Best wishes Cheryl,
jenipeni
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Dear Cheryl,

I am sorry your appointment with the new endo was not what you were hoping for.  

What I say next may come across quite bluntly but I don't know of a gentler way to say it.  Please just make a choice out of your current doctor's caring for you - Cut down to only one or two at the very most.  Doctors are not terribly good at communicating/co-ordinating care between other health care professionals (Ego?).  The other thing is that when you see many doctors, they begin to be a bit wary of you - thinking you could be doctor shopping.  

Besides - you will get better continuation of care seeing one regular doctor.  Your OB-GYN sounds like a good one to stick with...  hormone replacement looks promising?  Fingers crossed for you.

The new post you started has moved to page two (I think, could be page three by now?).

I have been away longer than anticipated - I had to go to our home town (3 hours drive away) to get hubby to the dentist and ended up staying 2 days instead of 1.  The day before his carpal tunnel was done he lost a filing.  I had an overdue checkup and found one of my filings had cracked so I must either get a crown or have it pulled.  It's one of my molars, and I've had a few pulled already and think I should keep this one (for chewing's sake) IF we can come up with the $1300 for the crown : (
It was nice to get away and stay with family anyway.

I don't see my gyno until March, so no more news on that front just yet.  

Cheryl, are you still taking the Remeron?  I hope you are.  If you are still on the same dose and feeling so down please see your doctor to review your dosage.  

I reviewed what medications you are taking (posted 1/21/2007).  Valium and Klonopin are both benzodiazepines (class of drug, you may be familiar with).  By Australian standarards you are taking a very high dose of Klonopin-but surely the prescribing doctor had reasons for this. Interestingly One of the adverse reactions of benzo's can be decreased libido.  Usually benzo's should only be prescribed for short periods and used with caution for someone who suffers from depression or psychotic disturbances.

I have some homework for you;
Go to:

http://www.rxlist.com/

Now look up each of the medications you take and print out the information.

I think you may find that some of your symptoms such as fever (which covers your sweats and chills) are a side effect or adverse reaction to some of your medications.

See what you think...

Anyone with chronic health conditions should have their medications reviewed by their doctor regularly - maybe it's time to do that.

I start uni again this week and with all that's happening, I am still trying to get myself organised.  We are in for some very hot weather the next few days so at least I'll be forced to stay indoors and hopefully get things done.

I hope you feel less alone by getting this message.  I have logged on for a quick peek a few times but didn't have the time to post.  Still thinking of you though.

Please be pro-active and make an appointment to review the Remeron and perhaps all your other med's too.
Remember; Tommorrow will be a new day and you can leave this one behind.
Best wishes Cheryl,
jenipeni
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Dear Cheryl,

I think that jenipeni is offering very good advice. As a nursing student, she is working in medical settings. In years gone by, when I was a nurse's aide, I worked in medical settings, so I recognize the truth of what jenipeni says: Physicians are not very good at communicating/coordinating care. I suppose that we should be generous in our analysis and say that heavy workloads are part of the reason, but jenipeni was pointing in the right direction, I think, when she said "Ego?" Yes, physicians are at high risk for having inflated egos, which leads to the "No one can tell me anything" thinking (something I think becomes reflexive rather than conscious).

During the time just before and just after my hypothyroidism was diagnosed, my morale was taking a pounding from some of my experiences in medical offices. I have done much better since settling into an arrangement in which I have a rheumatologist and endocrinologist who provide most of my care. They both treat me with respect and concern, and they both listen closely to me. They know each other and think highly of each other, which cannot hurt. Then I have a primary care physician who is amazingly humble and human. She seems happy to be everyone's go-between. She orders whatever tests or procedures the other two physicians request. She also made it possible, per my request, for the results of thyroid-related lab tests (including blood sugar and blood lipids) to be released to me the instant that the results come back from the lab. I do not have to wait for my primary care physician to review the results and then release them to me.

Then I make sure that every physician has a copy of every result. I also make sure when I see one of the physicians to give him an update on what the other one said the last time I saw him. I also have learned to do lots of "Where I have been and where I am now" reminding, or at least to be ever-prepared to do that when the physician's comments tell me that a reminder is needed. As hard as a physician tries to remember the details of your difficulties by looking at your chart, it is not easy.

In short, I have learned to be my own care coordinator. Taking on that role can do several helpful things, including giving you a feeling of some control over your situation (which is far better than feeling that physicians are walking all over you while you are helpless to do anything about it).  This only works if you have a pair of physicians like mine, but it sounds as if you do. I am impressed and quite amazed that your OB/Gyn gave a lot of thought to your difficulty and also corresponded with your surgeon. (Then to spend two hours with you...that says a lot about his concern.) It is true that neither your OB/Gyn nor your surgeon is an endocrinologist, but when you have physicians who are concerned about you and willing to devote both time and thought to you, it can lead ultimately to answers even if the difficulty is not within the physicians' area of expertise.

As a next step, jenipeni's other piece of advice is very good. I was a little startled when I saw your list of medications, although during the time when you posted the list, I was a combination of too overloaded with demands at work and too cognitively fuzzy (dratted thyroid gland) to put my thoughts into words and express them. Now jenipeni has done a much better job than I would have done anyway. Regarding jenipeni's comment "By Australian standarards you are taking a very high dose of Klonopin," the same is true of the Valium you take. It seems as if a medication review would be a good idea, and as jenipeni indicated by giving you homework, you should start by carrying out your own review.

I have homework for you, too. If you did not read the comments posted to this thread by "mertoo" (at the end of January), go back and read them carefully. You might want to ask the two physicians whose concern you can count on--even though they are not endocrinologists--whether they think that Cushing's disease has been absolutely, positively ruled out. Looking at the website resources mentioned by mertoo could give you enough information to have it make sense to your physicians that you have a lingering question. I have a lingering question, after reading mertoo's comments.

Let me close by echoing two of jenipeni's comments: I hope that you will feel less alone by getting our messages. Like jenipeni, I have been logging on for a quick peek every so often, but without any time to post anything. Nevertheless, I HAVE been thinking about you, with caring and concern.

The other of jenipeni's comments I want to echo: Please be pro-active. I know how extremely hard it is to be your own advocate and fight for yourself accordingly, when you feel as unwell and discouraged as you do, but it is the only way to reach a better place, both physically and emotionally. It sounded like trite advice when it was given to me more than once in my past, and it sounds trite now, but I have learned through experience that the advice is sound.

Jenipeni, I am so sorry that your husband needed to have a filling the day before his surgery, and now you need a pricey piece of dental work yourself. What is that saying about it never rains but what it pours?! I hope that at least your husband is having a smooth post-surgical course of recovery, and I hope that your organizing project is going well. How well I remember my student years and how important it was to feel that my home life was sorted out and well organized before being swept away by the "tornado" of a new semester.

My best wishes to you both,
Jenny  

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Hi,

I have not been on at all.  I reviewed the posts and I know that you both have big hearts, but I want to respond to a couple of things.  I have only tried to get to an endocrinologist, because my doctors are resistant to treating me since I have thyroid disease.  My OB is still concerned, and it is being proactive that has gotten me through the many struggles over the years.  The doctors I am seeing could not possibly be bothered by me looking for an endo, because it was their desire that an endo handle one.  Both the surgeon and OB.  I love my docs, but they are tossing me around.

I had to convince my OB to do something about my hormonal imbalance through being proactive.  I kept him late because I felt that talking was a must at this point in my life.  My surgeon is a sweetie, and I also talked extensively with him, convincing him of the necessity of doing something about the hormones.  This is what finally pushed him to fax his thoughts to my OB.  So, I am definitely not sitting on my hands.

I hope you are angry with me for being frank, but I am tired of the words doctor shopping.  They absolutely can terminate you and write inaccuracies in your records without any reprieve.  It follows you.  Today, I found a nurse practioner.  She wasn't ideal but much better than my PCP.  However, she wants all of my records.  My records contain innacuracies, untruths, and have things in them that are confidential by my standards.  I liked that this nurse practitioner saw the need for the control of pain in fms patients.

As for the Klonopin, in the states, .25 mg is considered nothing.  It is one-half of a tablet.  That is a story in and of itself.  My doctors put me on 1 mg of Klonopin 3 X daily and 10 mg of Valium 3 X daily when I had Graves'disease.  Sometimes, they raised the Valium dose to control the strong movement and symptoms from Graves.  After RAI, I slowly weaned myself to where I am at now.  It has been difficult to do so.  I also came off of the 50 mcg Duragesic patch to the 45 mg of Vicodin I am on now.  It was difficult, and I found out later that the drops I was doing because my doctor didn't help me come off of the Klonopin or Valium could have killed me.  I lucked out on that one.  I have discussed my dose of Valium with my doctor and Klonopin.  All doctors are of the opinion that this has nothing to do with those meds.  My OB said that the hormonal fluctuations are in his mind the definite cause, especially since I lack a uterus.  This causes hormonal imbalance in the body.  He also said that because I am so thin, my body does not produce estrogen from the adipose tissue or fat, I think.  I have read about this.  I am still trying to make decisions about the estrogen, and I believe I am going to try low-dose Estrogel and Testosterone at .2% compounded.  We are waiting to see if the insurance is going to pay.  I am a bit worried about what implications this has for my thyroid, but I believe that hormones are the issue.  The doctors have said that there are no tumors and Cushings is not being considered.  But they also say they aren't endos.  I have one last endo to see.  Nobody knows about these appointments.  That way there is no talking about me "doctor shopping."  As far as the pituitary, I believe that there is involvement, but it is a theory of mine.  I believe that the hypothalamus, pituitary, and adrenals are all a little out of commission, but it is nothing that is showing on the tests.  Hopefully, the hormone treatment works.  Maybe it will give my body a break and me some quality of life.

Another thing . . . I was on Klonopin .5 mg 3 X daily before any of these symptoms came on.  I was on it for 5 years.  I never had this.  I don't believe that it is related.  However, perhaps if hormonal imbalance is causing anxiety, etc., I will be able to lower the dose.  I do not think I could handle the withdrawal from those drugs right now.  I am still lowering the Klonopin slowly.  I will be off of it soon.  But my house can't turn up-side-down.  It is hard enough on the kids.  It is sad to me that they chose to use those drugs instead of something like Mirapex for the movement.  But honestly, everyone's body is different.  I think they did what they needed to for me at the time.  Valium/Klonopin are used to control rls.

I hope I don't sound abrupt, but I feel so many things right now.  I haven't even looked at the computer.  It doesn't seem necessary to me.  As for the Remeron, I wish I never started it.  It has worsened the restless legs syndrome, and it is contraindicated for restless legs syndrome as are all SSRI drugs.  I know they aren't in the same category.  My depression and anxiety are from chronic medical illness.  Before I got pregnant, I went off of everything except two benign drugs during pregnancy.  These symptoms were happening even when I was on nothing.

By the way, no one believes that the estrogen is going to affect my thyroid.  I am glad I had the heads up on that one.  If I had my way, I would have estriol compounded with lower levels of estradiol and estrone.  But I have to start somewhere.

Anyway, I do hope you are well.  To Jenipeni, I hope you and your husband are doing well.  To Jenny, I hope things are looking up for you.

Good night,

Cheryl
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Hi, Cheryl--

I think I am safe in speaking for jenipeni as well as for myself in saying that NO, of course we are not angry. As I read your latest comments, I felt only distress as I realized that perhaps we seemed to be saying that we saw you as a doctor "shopper," which is very, very far from the message that we both intended to send. If you look at my January 14th comments about the term "doctor shopping," you will know that nothing could have been farther from my mind in regard to you and your recent, extraordinary difficulties.

Especially when going through extraordinarily difficult times, it can be quite painful when communication goes awry. Your most recent post has made me realize that all three of us have been overlooking a hazard of communicating in writing, across a great distance, with someone we do not know. Although neither jenipeni nor I responded quickly to this part of your January 21st post: "I am going to tell you the medicines I am on so you can try to be a doctor--a judgmental one perhaps--for me. I know you are not judgmental, so please try to be for my sake. Here is the list:," when we did respond, we unintentionally made matters worse for you, not better, I think.

The reason was a lack of context. This is the hazard of long-distance communications between and among strangers. Even though you have provided an extensive amount of information about your medical history to date, jenipeni and I lack the context of your life as a whole--all of your history and all of your present circumstances. If we had known you for quite some time, or if we were close to you geographically and could talk face-to-face, we either would have a sense of the complex bunch of information that forms the context of your life, or else we could get a sense of it relatively quickly.

In the present circumstances, though, it is all too easy for communication to go awry which--as I mentioned in the paragraph before last--could be quite painful for you. It is such a help during difficult times to feel understood, but conversely, it can add a lot to a person's burdens to feel misunderstood. Adding to your burdens is the last thing in the world that either jenipeni or I would want to do, and again, I think I am safe in speaking for her as well as for me.

I am sorry that I had to come to this realization the hard way, meaning: at your expense. At least it is clear to me now that I should limit myself to wishing you well and not offer you any advice.

I DO wish you well. I am hoping and praying that the endocrinologist you have not yet seen will turn out to be the sort of rational and caring physician you have had SUCH a difficult time finding in the area of endocrinology.

Sincerely,
Jenny
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Hi Cheryl

EmpatheticJenny captured my thoughts exactly (thanks for that Jenny!) - I am not angry and do not wish you any grief or burden from mis-communication. I appologise if you thought that I was labelling you as a 'doctor shopper' - this was not my intention (rather only to say what many in the medical profesion are quick to label people as, which you already know).

I have not been able to follow what doctors you see and for what - maybe it's just my brain fuzz.  It doesn't matter any way, you are the only one who really needs to know what's going on.  And you're an intelligent woman by any measure.

I must applogise because when I commented on your dose of the Klonopin I missed the decimal point!  So you see, my mistake - and a big one.  ALSO (on paper) I thought your symptoms better fit the description for Addison's disease rather than Cushings.

If you don't think the Remeron is the best one for you then why don't you go back to the prescribing doctor and work with them until you find a better one for you.  It is depressing having Chronic illness and while medications can help, they won't cure the depression because they don't sort out the rest of our medical problems all in one hit.  You are in a hard place.

That review of your current medications still seems relevent to me though.

I agree with EmpatheticJenny - and to use some of her words - that in the present circumstances, (the distance, the fact we are not qualified medical professionals AND the enormity and complexity of your medical problems) it is clear to me now that I ALSO should limit myself to wishing you well and not offer you any further advice.

So I will finish in saying this - YOU know your body better than anyone will ever know it, hence YOU will have the most tuned in idea of what the hell is going on with it (with the relevant information/education of course).  

Best wishes with everything Cheryl.

sincerely,
jenipeni

TO EMPATHETIC JENNY,

Loved your recent post about Amour - go girl!!!
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Thank you, Jenipeni, for your kind words about my Armour-related comments! I especially appreciated the pat on the back because the inquiry about Armour came right in the middle of a hectic time at work, so it was difficult for me to find the time to put my thoughts into words. It is gratifying to think that it was worth eking out the time for, and if there is anyone's judgment I trust, it is yours.

In fact, I think so highly of YOUR thinking that a pat on the back feels doubly good when coming from you. The past few days have been bad ones in regard to my thyroid problem--bad for reasons that are understandable, but bad days are taxing to go through even if they are an expectable part of the getting-better process. Consequently, it was really nice to get an upbeat note from you, and that would have been true even if it did not contain a compliment! I hope that you are holding your own, that your new term in school is off to a good start, and that your husband is doing well, post-surgically.

Cheryl, I hope that you are holding your own, too. I have been thinking of you often.

Best wishes to you both,
Jenny
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Hi guys,

I have finally had the time to get on for a quick post.  I have been busy trying to get my insurance to pay for the testosterone cream, because it is a compound.  I hope I succeed, but am going to have to pay whether they do or not.  My testosterone is very low.  They did a repeat test.  After talking with my OB, I wrote a letter to the endo who was rude to me.  I told her what he had explained to me about my perimenopausal symptoms.  She agreed (after this) that testosterone replacement and estrogen replacement should be done.  Funny how when another doc called her on it, she changed everything she was saying.  I don't think I will be seeing her again, and hope that the other endo will be better, but I didn't want to slam the door shut to someone who might be the last endo in this area.

I understand what you were both trying to say about how doctors perceive "doctor shopping."  What I have done is to simply not tell my PCP if I am going for what I refer to as an "interview" with a perspective doctor.  This way, it isn't in my notes and they will not likely cross paths.  It would be difficult for my doctor to bring up doctor shopping to me, because she is not authorized to talk to physicians that I see unless she refers me to them.  It wasn't you guys, but rather I am tired of hearing those two words.  Unfortunately, today, there are more bad docs than good ones.  That is a reality.  You are right that it is difficult to understand and communicate by writing.  I don't want you to be afraid to talk to me.  I also was a little bothered by the use of the words "being proactive" in my care, mainly because I am so proactive in my care.  But it is difficult for you guys to know every aspect of my life.

My question about the meds was one that I wanted to know about prior to seeing these doctors, because I wanted to know if I should bring them up.  I ended up talking to my therapist/friend, and she told me that she did not think I should bring up any psych med for obvious reasons.  Believe me, I have thought about the possibility of whether the Valium, Klonopin, etc. could be the cause.  But I was on these for a long time without these symptoms.  However, I still want to reduce my Valium, Klonopin, and pain meds to the lowest dose.  The most recent nurse practitioner I saw told me that she believed I would need to stay on the 45 mg of hydrocodone.  If the testosterone/estrogen help with the symptoms (sometimes anxiety, sweats, and on and on), I probably will be able to lower the doses of my other meds.

But as for those drugs causing the symptoms, I don't believe so.  The reason is really simple.  I was put on these higher doses to control the symptoms that I am currently having.  Without the meds, I would be much worse.  I hope that helps explain.

With regard to Addison's disease, the endos I have spoken to categorically do not believe I have that disease.  When no tumors were found on the abdomenal (abdominal) CT Scan and no tumors were found in my brain with the MRI, they decided that I do not have a pituitary problem nor an adrenal one.  I know that it is possible I do have a problem that wasn't picked up by these radiologic studies, but the endos I have seen examined all of the tests by urine, blood, and radiology, and that is their conclusion.  My OB doesn't believe that a glandular problem can be ruled out with tests alone, but he says his hands are tied due to not being an endo.  Hopefully, the endo I am seeing in April will run further tests to be sure that I don't have a gland problem that is being missed.  There are other tests that can be run, but not many.

I had a thought recently.  Fibromyalgia patients often have dysautonomic function.  When I first was diagnosed with Graves', OHSU Fibromyalgia Clinic wanted to run a tilt-table test on me to see if this might be the case.  I was too ill then.  The nurse practitioner who wanted this also was surprised at how high my IGF-1 blood test came back.  I had one run about a week ago.  It was on the high end again.  This is unusual in fibro patients.

Anyway, enough for the night.  I did wonder what the discussion of Armour was about.

I am thinking of both of you and hoping you are recovering well,
Cheryl
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Hi Jenny,

You are so kind to repay one compliment with another.  Thank-you from the bottom of my heart.  Funny how things come along just as you need them isn't it?  Same happened for me when I read your thread.  Thank-you again.  I hope your days soon become less taxing.

Thanks to both Jenny and Cheryl for the kind wishes for hubby and I.  It's seems we are going through a 'patch' right now.  Hubby's hand is well and truly on the improve, although I wish I could say the same for his job - not happy times at the mo' but I won't go there.  I'm going back to the dentist in a month for the completion of my crown, we bit the bullet and killed our budget.  Next week is my first consultation with the gyno, fingers crossed.  In the meantime I've had a bad bout of internal haemorroids for the last 3 weeks.  At least that's what I hope it is.  It's lasted too long so I'm off to see my normal GP too!  It never rains but it pours (and we are in drought) LOL!!!
Studies are just beginning to gain momentum, got my first assignment already.  

To Cheryl

Glad to see you're still around, I was beginning to wonder if we'd lost you.  I'm sorry you were bothered by the use of the word 'proactive' - I just know that when feeling down and you're not well it can be really hard to muster the strength to keep at it.  I had really hoped to encourage you in saying it when I did.

I'm curious if there has been any association between your low testosterone and your leaky breasts?  Soooo glad for you that you are about to begin treatment soon.  It will be interesting to see if the testosterone cream has an effect on your breast discharge anyway.  And I hope that the insurance company comes to the party for you too.

I understand your thinking in your explanation for why you don't think it is your medications causing some of your symptoms.  Even so... our bodies and the reactions we have to different foods and medications change over time.  People have been known to develop alergies (allergies) or reactions to medications they have taken for a long time - I'm not saying you have an allergy, just using this example to make my point.  So while you are probably right, I still don't think your medications can be ruled out altogther.  Did you look up each of your medications and look at their side effects?

I've not heard of 'dysautonomic function' - I'll have to look it up when I have time.  I continue to like everything your OB says...

The Armour conversation was on 2/21 and is titled 'Is anyone on Armour?' - at the time of this post it was on page 2.



Good to hear from you both, best wishes with beginning testosterone and estrogen therapies Cheryl.  I hope it works out.

Cheers
Jenipeni
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Quick note,

I don't believe it was you two that caused me to have the feelings I did.  The words impacted me because of some history of others using the words.  So, don't take it personally please.  I almost did leave, but mainly because I was heavily considering suicide to end what has been a long struggle with no end in sight.  I am glad that I pushed my doctors to finally do something although it was stressful to do so.  The endo thinks that the breast discharge is ideopathic, and it is normal for some women to have discharge after having children.  While true, I never had this until after my thyroid was ablated.  Also, I believe that many of the symptoms I was having during Graves' were actually related to out-of-whack female hormones.  But no one would consider it, not even the OB, because the numbers were normal.  After telling him that my quality of life was not acceptable, I believe I convinced him and my surgeon to talk and think.  I believe that the testosterone will help alone.  Then, I will add Estradiol if necessary.  It bothers me that I will not be given progesterone, even though I lack a uterus, because much of what I read indicates that it should be used even with women that do not have a uterus.  I am also bothered by unopposed estrogen, because I have endometriosis.  I think a proper balance of testosterone, and estrogen plus progesterone, should be used for the best effect.  I would not use Progestin, but rather "natural" progesterone.  I put it in quotes, because it is still synthesized, but can be manipulated to be like the progesterone in our bodies.  The word natural is being thrown around a bit too much these days.

I hear you on the medicines.  I have eliminated the Marinol as of a couple of days ago.  I tapered off of it.  My doctors look at my meds once a month to evaluate and I have researched, but you know that feeling you get about your body and when something is wrong--I have that.  And while the medicines could act differently in me, I have a sense that this is not the case.  In a way, I wish it were, because I could wean off of them and problem solved.  That is why I came off of the Duragesic patch.

Anyway, I gotta go.

I hope you both are doing well.

Cheryl
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You are very, very welcome, Jenipeni! I am more pleased than I can tell you if my comments happened to be well-timed. It certainly is the case in your life at the moment that you and your husband have gone from rain to a downpour, which makes me especially glad if I could boost your spirits a bit. I will cross my fingers for you as you head into the gyn consultation.

Cheryl, you probably could write an entire book on the topic of "the numbers are normal" thinking among physicians. If we were to ask most physicians if it is true that the field of medicine knows only about 2% of everything that medical doctors would like to know, the vast majority would say, "Yes," I feel certain. Where any one patient is concerned, however, a lot of physicians seem to think that if the numbers are normal, then there is no reason to pursue the patient's complaints. I have had the experience of talking to a physician who took me seriously, who seemed to believe that I was being entirely accurate in what I described, listen to my full account and then say, "I don't know what to tell you" as if that one statement were a diagnosis and treatment wrapped into one.

Doesn't it amaze you sometimes that we manage to survive the "help" we are given for our afflictions along with the afflictions themselves? I feel extraordinarily blessed in having an endocrinologist I work well with. Tomorrow morning will be a blood draw, and then I see my endocrinologist on Thursday. It will be disappointing if he does NOT think another medication increase is warranted, since I was tantalizingly close to feeling like my old self until after 30 days of my current levothyroxine dose. A four-week downhill slide has been characteristic of me with each level of medication I have been on, which is why I am hoping that the numbers from tomorrow's blood tests will not be "normal."

Whatever my endocrinologist says, though, there will be sound reasoning and genuine caring about me behind it. On days when I am feeling my most unwell, it is easy to lose track of the reasons I have for feeling gratitude, so I am glad to have you two to remind me that my situation contains reasons to be grateful indeed.

Sending you both best wishes,
Jenny

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Hi gals,
Really tired tonight it's been a big day, but I thought I'd post a quickie.

Best wishes Jenny for your visit on Thursday and test results (you must be just about to start Thursday as mine is coming to an end)!  Fingers crossed for desirable outcomes for you!  Let us know how you go...

Hey! I wonder if together we are setting a record for the highest number of posts in a thread?  We are getting close to triple digits!!!  I've never seen another one this big!

Darling Cheryl,

I thought of you today while at uni when I heard an interesting take on intuition.  The take was that intuition is just when we lack the words or our conscious mind has not yet recognised why it has come to particular conclusions.  We already have the knowledge within us.  It reminded me of your earlier comments about the feelings you are having about what your body is doing (or not doing).  I have high hopes for you that you will get there with your health - there being a place of health and wellness.  I wish it were possible to send someone strength and endurance because I would send some to you, to get you through to the end of this marathon you are on.

Have you started the new therapies yet?  I pray they bring you joy and relief.  

May God bless you both and your families.
xx
jenipeni
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Thank you, jenipeni, for thinking of me! You are right; I may well have been on my way to my endocrinologist as you were getting ready to turn in for the night.

Your crossed fingers worked! My endo was a little surprised that although my TSH had dropped from 1.9 to .93 over six weeks' time, my free T4 level had risen from 1.21 to an impressive 1.22. (Yes, I am being ironic!) He said, as he says often, that the world of endocrinology knows far too little about many things.

At any rate, he took very seriously my carefully thought-through opinion that signs and symptoms of the previous ten days clearly indicated the need for a medication increase. Beginning yesterday, I have gone from .75 to .88 mcg. a day. It probably will be my last increase, since my endo said that if my TSH level drops as far as .5, he would not want to suppress it further. When I look at an overview of dosage increases and the TSH levels that followed, it seems likely that the latest increase will push my TSH down to .5 or less. If a blood test six weeks from now indeed shows that sort of level, and if I still am not feeling well, then it will be time to talk about experimenting with supplemental T3.

I plan to cross that bridge when I come to it, however, if indeed, I come to it at all. For almost three weeks at the 75 mcg. dosage level, I was tantalizingly close to my former level of excellent well-being.

It was hard on my morale to have my well-being go downhill again, so I want to think you for keeping my morale well-boosted. I think you are raising a good question--we may be setting a record with the length of this thread! The supportiveness that you have contributed to it, though, has been of record-breaking quality.

For example, your message to Cheryl is so eloquent and so wonderful that I can only add: If it were possible to send someone some strength and endurance, I would add to what jenipeni would send to you.

I would send some to you, too, jenipeni, as you run your own sort of marathon. Thank you for the "God bless" wish. I am returning the thought to you both: May God bless both of you and your families.

Sending you e-hugs,
Jenny
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Hi Jenny!
It made me so happy to read your post and know you are having success with your dosing and the TSH going in the right direction BUT most of all you have been beginning to feel like your old self again!  It's a good sign!!!  HOORAY!!!  Three Cheers for Jenny and her caring doctor!!! Yipee! Yipee! Yipee!    

Have you considered trying supplementing with Selenium to help boost your T3 levels before adding Cytomel?  Just an idea, one that I am going to try once I have this next blood test.  My personal experiment is that after this next blood test, I'll have had 3 tests post TT.  In each of my tests I've been middle to high range Free T4 but only low to middle range for Free T3.  
So it will be interesting to see subsequent blood tests after I begin the Selenium.  Not terribly scientific or accurate but it will be interesting none the less.

From memory I think the literature confirms that Selenium helps reduce antibodies and MAY help with the conversion of T4 to T3.  

By the way I can't remember - were you ever tested for antibodies?  

Thank-you for wishing me strength and endurance - it must have worked too! LOL!  Yesterday I did my first 8 hour shift nursing since my TT!!!  I made it!  And I didn't feel tired till I got home and sat down, but not exhausted!  And that was the day after my hubbies b'day when I cooked a big dinner for him and family!  Whew!  I can't believe I made it!!!


Dear Cheryl

Are you out there still?  How have you been?  I hope you didn't take offence to me wishing you strength and endurance - in no way did I mean you are not strong already because you certainly are.  In the time we have been corresponding I think you have shown lots of guts and determination.  But even the strongest of us get worn down by chronic long term illness unfortunately.  
By the way I totally agree with you about the word 'natural' being thrown about too often these days.

E hugs sent back to Jenny and also onto Cheryl!

Bye for now
Jenipeni

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My dear Jenipeni, thank you for being so happy for me!!! Not surprisingly, given my history of ups and downs as I adjust to medication, I have had a few less-than-grand days since my last dosage increase. I have had some very good days, however, and seeing your three cheers for me made the good days suddenly seem more vivid. I keep reminding myself that when going through a process of two steps forward and one step back, if the numbers are added together, the sum amounts to movement in a forward direction even with the "one step back" days included.

Thank you very much, too, for offering me the idea of Selenium. I had not encountered the idea before. I definitely will talk with my endocrinologist about it. He is quite open to trying a variety of treatment approaches.

Yes, I was tested for antibodies, and I have none. My thyroid gland's struggles may have beeen caused way back in the 60s, when I was still in adolescence, and I was given radiation treatments for acne. The idea had become controversial, but I remember the dermatologist's saying to my mother that he used a low dose of radiation for the treatments and thought that they were safe. Those were the days before anyone thought to shield vulnerable parts of the body with lead coverings, though, so there I lay on the table with an exposed neck, having first one cheek and then the other zapped with radiation. It makes me shudder to remember.

At any rate, even though I do not have antibodies, Selenium might be a help to me. Thank you for the suggestion.

...and now it is my turn to say: Three cheers!!! I am happy and highly impressed that 1) you made it through an 8-hour shift, 2) you were appropriately tired but not exhausted when you got home, and 3) it was only the day after the highly taxing undertaking of a staging a big dinner party. WOW! Since I was a nurse's aide at one time in my life, I think I can put your experience into an accurate perspective. Isn't it wonderful to do something that is bound to be tiring, but you feel tired in a normal way, not an overdone way, at the end of it? I am not yet to the point of being able to count on that, but I know how exhilirating it is to respond to a normal demand of everyday life in a normal way.

Cheryl, I hope that it will be your turn to feel that exhiliration soon. I know that you are still waiting to see the new endocrinologist; I remember that your appointment is in April. It must seem like a lifetime-length wait. I am sending you e-hugs, and then on to jenipeni!

My best to you both,
Jenny

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