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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 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
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 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 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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173351 tn?1201217657
Hi Cheryl

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173351 tn?1201217657
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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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,

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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173351 tn?1201217657
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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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, 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 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,

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,

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 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, 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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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 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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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 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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Dear Cheryl & jenipeni,

I feel the same way jenipeni does when she looks at 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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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 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 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 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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173351 tn?1201217657
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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173351 tn?1201217657
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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