Aa
A
A
A
Close
Thyroid Disorders Community
26k Members
Avatar universal

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
90 Responses
Avatar universal
Hi, Cheryl--

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

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

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

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

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

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

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

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

Truly empathetically yours,
Jenny
Avatar universal
P.S. Please pardon my cognitive fuzz. In a comment I just posted in which I reported the TSH level on which a diagnosis of subclinical hypothyroidism was made (in case anyone was curious), I failed to include the lab's reference range. The TSH value was 4.11 and the reference range was .32 - 5.0.
Avatar universal
It would be helpful to know your TSH and both FT levels with Labs reference range and the meds you are taking and dosage. You sound hyper to me.  Whether med. inducted or you thyroid issue has progressed into an different thyroid condition, or other health conditions.  Also you might benefit more if you are treated by an endo.  who deals with a lot of thyroid patients per year - most deal more in diabetes.
Many other health conditions share a lot of thyroid symptoms, making it hard for doctor to make a correct diagnose and its a long tedious process of many test. But well worth in the end when a diagnose is finally made.

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

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

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

The advice to be treated by an endo. who deals with a lot of thyroid patients is excellent. It will be good advice for Cheryl to put to use if she is able to fix what seems to be the major flaw in her medical care situation--that her current physician is not very good.
Avatar universal
I am too ill to respond right now.  But I greatly appreciate everyone's response.  I will try later.  I am sweating severely.

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

More info below.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks for caring though.

Cheryl
173351 tn?1201217657
Hi Cheryl
One sentence stood out in one of your posts and rang alarm bells LOUD!
Have an Answer?
Top Thyroid Answerers
649848 tn?1534637300
FL
Avatar universal
MI
1756321 tn?1547098925
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.