Could my Fibromyalgia really be Hypothyroidism? Some facts

Discussion in 'Fibromyalgia Main Forum' started by 99, Nov 2, 2006.

  1. 99

    99 New Member

    Hi Folks!

    Sorry it's been so long for me to get back to you all. Aside from struggling with an ancient computer, I'm still struggling with medical problems, even though we've made some headway with the diagnosises...there are just sooo many things to contend with, I've been kept pretty busy with doc appointments, treatments, some surgery, and then just plain ol' depression has somewhat immobilized me. Mea culpa...

    Some things have gotten some better, others have not. What is clear to me now, is that I believe undiagnosed hypothyroidism started my whole decline. Ten years ago, a rheumatologist said I had Fibromyalgia, even though I didn't have the specific tender points, sore throat, or swollen glands. She said I presented the same--- and because my thyroid levels were so called normal, she diagnosed FM. Later, a second Rheumatologist said the same thing, for the same reason. (I just think they didn't know quite what to do with me.)

    The important difference from true FM, I believe,was that I hurt 'all over,' and not in specific tender points. Every single part of my body hurt to move, and to touch. I felt like one gigantic BRUISE from my neck to my toes. I later found out that this is because with hypothyroidism, muscle cells actually die from lack of oxygen-- which explains why exercise makes one feel so much worse, and of course, why one hurts all over, and not in specific tender points. (Forgive me if I'm using the wrong word for tender points. I have a mental block about that, and simply cannot remember the correct wordage for it.)

    Hypothyroidism affects everything in one's body ~ All the cells' metabolism, and even such things as sleep (chronic fatigue) and depression... Unfortunately, current lab standards for diagnosing thyroid problems leave a lot to be desired, yet that is what most practitioners follow in prescribing treatment. I used to be an ICU cardiac nurse, and we had a saying: "Treat the patient, NOT the monitor!" Apparently, other branches of medical practice do not share this attitude.

    My symptoms began in the mid 1990's. Because my TSH was so-called normal, they diagnosed me with FM. (Don't think they knew what else to make of me.) Then I started on a downward spiral that resulted in an increase in weight, and an increase in symptoms. Eventually, I became Diabetic, and my cholesterol levels were off the wall. I'm sorry, but I truly believe that had my thyroid condition been accurately diagnosed early on, I might have been spared a lot of the destructive consequences I'm having to face, now. They are serious, and complex, but MIGHT have been avoided with early detection.

    My mother was diagnosed with hypothyroidism a few months before I was. She'd been losing her hair for some 15 years, and everyone thought it was from stress. She gained weight, but ate like a bird. She is not diabetic. Tests were 'normal' until eventually they weren't. Now, after being on Synthroid, she's lost 35 pounds, and her hair is coming back in -- curly, to boot!

    No one can convince me that a person may not have hypothyroidism even when their lab values say they're fine. I believe people should be treated according to their symptoms, and not the numbers. (NOT the monitor, yes?) Dr Lowe may say that Fibromyalgia leads to symptoms of Hypothyroidism, but I would sorely beg to differ. I feel strongly that it's the reverse. I know, beyond a shadow of doubt, that my symptoms have never changed, and what was first diagnosed as FM was later explained and documented as Hypothyroidism. So, what came first - the cart or the horse? From my own experience, I would have to disagree with Dr. Lowe. Think I should write to him;)?

    Of course, I write this not with the intention that I convince you to think like me, but only that you are given options to your own thinking. Perhaps, like me, you have been told such and such, but it didn't quite fit. Until I began researching things on my own on the net, I didn't look beyond what I'd been told by medical doctors, and I found out that they don't know everything! We've GOT to take responsibility for our own health care, because we simply cannot blindly accept what we've been told.

    Of course I wouldn't say all of this without having some facts to support my claims, either. For anyone who wants to learn more about the Fibro-Hypothyroid Link, I would encourage you to look up the theories of Dr. John Lowe. He is the Director of Research for the Fibromalgia Research Foundation. Mary Shomon has written many articles on pertinent topics relating to this, giving fantastic hyperlinks within her articles, for additional info.

    For example, "Fibromyalgia Aches & Pains as a 'Symptom' of Hypothyroidism" -- Theories of Dr. John Lowe.... are a MUST READ. You can find this at http:www, Sorry, but I can't hyperlink this to you in this format.

    Another link you should check out is regarding "Optimum Diagnosis and Treatment of Hypothyroidism with Free T3 and Free T4 Levels at: ttp://


    "Major Reversal at American Association of Clinical Endocrinologists Regarding TSH Levels and Diagnosing Hypothyroidism"

    Lastly, an important thing for all of you who have the same conditions as me to know about, is that people with Hypothyroidism are likely to suffer an incredible increase in muscle aches, pain, and weakness in their muscles and joints when taking 'statins' for lowering cholesterol. There was a time when I didn't know what was happening, that I swear, I would have rather died than continue in that kinda pain. Eventually, I looked the meds up on the computer and saw this was a "rare, but serious side effect," and stopped taking the med. It took some 3 months for me to feel better. (Though not ALL better.) Docs don't seem to recognize the severity of this side effect, or that it may be another sign of undertreated hypothyroidism. Although I've been on Synthroid and my TSH has come down (to 4.5) I STILL can't take those statins!!! Some research says that when the thyroid is back under control, statins can be reintroduced and tolerated. Obviously, 'under control' must be a below normal level..

    I've been printing some of these articles and giving them to my primary health care provider. Apparently, she thinks there is some merrit to this info, and has increased my Synthroid to 50 mcg/day from 25/mcg per day. I'm hoping that if I can get my TSH level down, down, down, that there will be improvements in other areas. There seems to be a trangle of relationship between Thyroid, Diabetes, and Cholesterol. From personal experience, I swear there is! But I am not a scientist...

    I can only share my experiences and my thoughts with you dear people who have wondered, as I have, what the hell is wrong with me? I can relate to your frustration when doctors pooh pooh your complaints because labwork doesn't support your claims. However, I can't tell you that my problem is the exact same thing as yours... I can only suggest that you might want to investigate the hypothyrodism factor, as it sure has answered a lot of previously unanswerable questions for me. I'm still working on the solutions, but at least I have some idea, now, where to begin!

    If I have helped even one person in some way, I'm happy. God Bless You and help guide you towards healing and wellness.

    ~ Gail

  2. joyfully

    joyfully New Member

    Yep. I've tried to convince my PCP that I experience a marked increase in muscle weakness and joint instability when I took zocor, but he wouldn't hear of it.

    I now take zetia (from a different doctor).

    Also,Gail. If you are still having trouble with the thyroid RX, I'm surprised that your doctor hasn't tried the "real" thyroid replacement rather than the synthetic Synthroid.

    I can't think of the name of the "real thyroid" replacement medication right now, but I'm sure Shomon has it on her site.
  3. lenasvn

    lenasvn New Member

    You have no idea how much I appreciate you posting this. We have thyroid disease in the family. It is unbelievable how little the general physician knows abnout this.

    My levels are "normal". My symptoms started when I gave birth to my first child, I had difficult 3 pregnancies, and every pregnancy ended me worse than the last. I wouldn't be surprised at all if I ended up having thyroid issues rather than FM/CFS.

    Thanks for posting
  4. monicaz49

    monicaz49 New Member

    excellent post. thank you. yes i always thought thyroid especially since i have so many syptoms that are similar. my tests were normal accept 1x i tested my T4 was high..but the tsh wasnt. so they said im fine.
    one thing i suffer from is EXTREME heat sensitivity..also a sensation of throat tightness, dizziness, fatigue...etc.
    I feel very lost and do not want to live this sickly forever.
    I tried going to the mall a normal person. I had maybe 8 different symptoms hit me and felt like a freak. I had to tell my aunt...pls lets go home. :(
    It wasnt a panic was all the symptoms i listed below....i was soooo hot, my eyes burned, fatigue, etc.
    i am sensitive to medication so i dont just want to experiment with thyroid meds...but i feel i should.
    like.......nothing is ever clear.
  5. monicaz49

    monicaz49 New Member

    forgot to add...i mentioned that sometimes thyroid treatment can help even though tests are normal to my doctor. she said...ya but thats usually a psychiatric thing....when you see a shrink with symptoms they sometimes wanna experiment with it. We dont do that.
    Who do you see for meds?
  6. sdjones

    sdjones New Member

    Here is a link for everyone to read. I am convinced that all this time (8 years) it's been my thyroid that's been making me so sick, so, I'm gonna print this out and give it to my PCP.

    Here is the link for your reading convenience....

    God Bless,
  7. wish_to_be_healthy

    wish_to_be_healthy New Member

  8. Redshadow

    Redshadow New Member

    Let me give you my lowdown.
    I was diagnosed hyperthyroid April 05 of last year and then in June 05 I was diagnosed hypothyroid. I had electrical shooting pains in my chest in January 05. I didn't tell anyone because I figured I was imagining it. Then it got worse started having the hot flashes, constant high blood pressure, high cholesterol, bad insomnia periods of all over body pain. What I've read about thyroid and FM is that they think the thyroid can trigger FM. I've been on the synthroid pill since June 05. I still have all of the same symptoms. I even went to see the Chief of Endocrinology at my local hospital and he didn't even believe my thyroid died because I'm too young for that, well he was surprised when he actually scanned my neck and saw it shriveled up. The sad thing is if your tests comes back normal then they assume nothing is wrong or you're crazy. What I've learned from this is always listen to your body if you have all these symptoms and you're still having a negative hypothyroid result keep on getting tested. The problem is with treatment of the thyroid you will have to go on a hormone pill for the rest of your life and once you're on it you can't stop taking it whether your thyroid is ok or not. I know I'm rambling on but I must also tell you about a woman I use to work with. She had all the symptoms of hypothyroid but for 5 years she tested negative for it. Her husband and friends thought she was a hypochondriac and her Doctor began to think this as well. So she ended up at Shepard Pratt, an institution for the mentally ill. So sad ,no one believed her because she did have hypothyroidism for some reason it just wasn't showing positive results on her blood work. She noticed a huge difference in only a couple of months after getting on the synthroid pill but still gets thyroid storms. So make your Doctor keep testing you even if they keep coming back negative.
    (((soft huggies)))
  9. jdkc

    jdkc New Member

    I went into my Dr. last year with symptoms of extreme pain, especially in my feet. I did have the tender points but not very many.

    She said it sounds like hypothyroid(I also had some weight gain),though it may be fibromyalgia. She tested me for hypothyroid and sure enough I was.

    For a little while after starting on synthroid I did feel better, but not for very long.

    I just went in last week, because I couldn't handle the pain anymore; I had quite a few more tender points. Since all my thyroid numbers are in a good range, she is sending me to a rheumatologist.

    She told me many of the symptoms of hypothyroid mimic fibro, so thyroid should be looked at first.

  10. MargaretOB

    MargaretOB New Member

    Hi Gail,

    Thanks for posting that. I wondered if I had hypothyroidism because one of my sisters had it, but my lab tests were all "normal." You say your tests were also normal, but at some point did they go out of whack, so that's when they gave you the diagnosis of hypothyroid and started the meds?

    I can agree with owning one's health, but I must admit that I get tired of being looked at like I'm searching for an illness, depending on the doctor I see. I make it a point to tell them that I was finally a chemical enginner (i.e., not disabled on purpose) and I do have some intelligence. I just can't remember squat. :eek:)

  11. joyfully

    joyfully New Member

    yes, I think that is the name of the real thyroid medication. I'm having brain fog.
  12. tinktink

    tinktink New Member

    Hi Gail
    I cant tell you how glad I was to read your post!!!
    In the early eighties I had a misscarriage and in the 3 months following gained about 50lbs. A doctor put me on synthroid and some time after I remember very clearly walking down the street thinking ... I feel really good, this is how people are supposed to feel. Very long story short, I was very young and moved away and stopped taking the med.

    Fast foward to tomorrow at my doctor appt., where I had Planned on talking with her about putting me back on synthroid even though my blood tests show my functions as normal.

    Your post has given me a lot of good info and more confidence so when I walk in there tomorrow I believe trying to go back on synthroid may be a very good thing for me.

    Your posting was great timing for me.... thanks again.


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