Fibro and Hypothyroidism Link, w/ links to 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. kjfms

    kjfms Member

    Yes the thyroid can cause all kind of problems. I am very happy you found your problem and are being treated for it.

    I have FMS and hypothyroidism secondary to Hashimoto's Thyroiditis. I agree -- with hypothyroidism you have the unbearable aches and pains that are so close to FMS but with out the tender points. I have the tender points also.

    The symptoms of both are very close but once you had them for a while you get to know each very well...LOL

    We have had some great discussions on here about thyroid disease -- just do a search and you will find them. There is also a lot of information:)

    I wish you continued success,

    Karen :)
    [This Message was Edited on 11/03/2006]
  3. Fudge43

    Fudge43 New Member

    Gail .. your information and opinions are great to read and I agree whole heartedly with them ! .. I am the "strange but true" case that was diagnosed in the opposite manner ..
    My first complaint ( although I had many others ) was this darn lump caught in my throat .. in short I was diagnosed with a large diffused goiter .. Hashimoto's .. and treated for that first ( sadly not all that affectively for some time) ..
    By way of me demanding to see a surgeon to get rid of this monster in my throat, which he said he could not do, too much of a "mess" .. he refered me to a rheumatologist who then confirmed the fibromyalgia ..
    Talk about a long road getting to it, but finally there.
    I just thought it might add interest to this thread that I was lucky and was diagnosed in this order ? haha
    Thanks !
    Joy : )
  4. NyroFan

    NyroFan New Member


    So true for me. Whe i got my Dx for Fibromyalgia I was immediately put on Synthroid.

    It is food for thought for all of us.

  5. CanBrit

    CanBrit Member

    Lots of wonderful information there. About 4 years ago my blood levels were tested and it appeared that somehow I must have been drinking several litres of saturated fat daily to get the levels indicated.

    I pressed my Dr to send me to an endocrinologist, who did no further tests and put me on a statin drug. My blood levels didn't come down until last year.

    I was diagnosed with FM in December of 2004 and Hypothyroidism Feb of 2005. My TSH was at 15 and my FT4's were way out. (All previous tests had me around 5)

    I currently take 75 mcg's of levothyroxin which keeps my levels just under 2 and feel that this is controlling the symptoms quite well. It wasn't until I started taking a daily supplement of Calcium Pyruvate early this year along with Lipidil that I actually have all normal lipid levels!

    I also note that you developed, rhabdomyolysis, while taking statins. That is one very scary side effect. I'm lucky that my medication is not in the same family as those types of statins and have had no side effects from it.

    Thanks again Gail, for the very detailed information.

  6. TKE

    TKE New Member

    I have Grave's Disease (hyper thyroid). HAd RAI & went on a fast downward spiral. Gained 16 pounds in 3 weeks & I was only eating a tiny sandwich once a day! Slept 20 hours a day, etc. Took me 3 years to get back to somewhat normal on Synthroid. Did pretty good for 7 years & then WHAM! Hit me like a ton of bricks. Major pain/stiffness/fatigue/depression/anxiety/etc.

    The list of symptoms for thyroid is long, but most docs only treat a few of them, telling you the rest are natural/etc for your age/etc. I beg to differ. If they're so naturla then why doesn't everyone suffer from them at the same age??? High cholesterol is listed as one of the symptoms of thyroid disease.

    It took me awhile, but I discovered thru testing (T3 hormones) that my body had stopped converting the T4 hormone (synthroid) into the much needed T3 hormone. So I was put on cytomel. I take 5mg 2 x a day. I take .125mg Synthroid daily. That's the max dosage my body can handle or I go into a hormonal rollercoaster with racing heart. Took 3 weeks before I felt a difference on cytomel. Stiffness got less, as did the pain, etc. It didn't take it all away tho. Did OK for a few years & am now back to increased fatigue/anxiety/stiffness/pain/etc. I've developed lower back & neck herniations/myofacial triggers upper back & shoulders/etc.

    I found out that the last Endocrinogolist I went to back in the 90's, who was the head Endo at a major hospital, left me undermedicated for several years. My TSH needs to be at the bottom of the scale or even below it for me to feel even close to normal. He told me my TSH was perfect. NOT! It was over 6. Back then you couldn't get copies of tests/etc from the docs here, so I just had to trust him. 4 years of complaining of increased fatigue & I went looking for a new doc. He kept telling me I looked the perfection of health. Have always been thin, well muscled, etc. Only to have the next Endo insist I had Addison's Disease. Put me on meds while waiting for the tests to come back to prove it & I ended up in the ER. My body felt like it was going to explode. Told him I could NOT take steriods. They never listen to you do they?? Anyway next doc(family doc this time) was great at working with me & that's how we discovered the T3 was so low. Mine was almost non-existant!

    The TSH ranges have changed 6 times since I was first D'xd with Grave's Disease in 1987. They say it's to "fit" more people in.

    I honestly feel I ended up with Fibro because the Endo's kept me undermedicated all those years. So yes I am one who does believe there is a major connection between Fibro & thyroid disease. My cholesterol levels are approaching the bad zone. Bad cholesterol is slightly elevated, but I still have enough good cholesterol levels. Glucose/sugar levels are normal. Thank goodness for that cause I have a major sweet tooth ;).

    So many docs swear by tests & ignore symptoms. Tests are not fool proof & often give false postivies. Some day they may get this all figured out. I just hope it's sooner than later.

    [This Message was Edited on 11/03/2006]
  7. llama

    llama New Member


    I've had hypothyroid symptoms my entire life and have a strong familial history. My TSH levels were always "normal" range, despite my clinical presentation.

    Started doing my own research and was astounded at the recent amount of skepticism regarding the validity of the TSH test in general.

    I believe, you mentioned Mary Shoman (excellent, informative author)she also questions how valid the results of just having a TSH performed.

    I have found a very useful website:, it has some good links also.

    I was on Synthroid with absolutely no change in symptoms. I now refuse to be on a T4 only med. I will only accept a T3 med or a combo like Armour & synthroid (I know there are actually combination pills, but at the moment can't come up with any of their names).

    I'm presently on Cytomel (only 6 weeks) and am beginning to see some results. I've read numerous articles that caution to not get discouraged if med. doesn't help immediately (especially if you have been symptomatic for years, it may take months for the drug to be fully efficacious).

    This is just MHO and in no way am critical of what choices you are making for your condition. I really think, though, that the medical community in general is reevaluating the testing and treatment of Hypothyroidism.

    Good Luck in your path to good health!.....Jill....
  8. Redshadow

    Redshadow New Member

    I'm hypothyroid too! I started getting FM after I was diagnosed. It's so crappy!
  9. wish_to_be_healthy

    wish_to_be_healthy New Member

    When I lived out in CA, I worked with a natropath...I was on Cynoplus(T4 and T3) from Mexico made by Smithcline Beecham...they also made cynomel(just T3) which is Cytomel here in the US...I could not take was too strong.

    I felt so much better than when I was taking synthroid (just T4).

    For years, my TSH was in "normal" range, but I wasn't feeling well...finally an Endocrinologist from UCLA said I needed to be on Thyriod meds..

    Durning my pregnancy out there, I was on Armour Thyroid, that my OB prescibed...I also took a natural progesterone (not progestin, like BC pills)

    I think these things helped me those years out there.

    What ultimately wacked me out was when my Rhumey put me on Ultram...that was the beginning of the dowmward spiral of my health, and mental problems that drug caused!!!!!!!

    Now it has been 3 years...and it is time to pick up the pieces...I am so glad you posted this...It has helped me to remember what did work for me, and to try it again...I still have Armour thyroid...Cynoplus from Mexico really did make me feel so much better...harder to get now that I'm in MN...was easy just to go down to TJ and cross the border to buy it.

  10. painintheeverywhere

    painintheeverywhere New Member

    as a nurse, you must know the seriousness of taking medications that are not substantiated. I just want to tell you of a Doctor in Castle Rock, Colorado by the name of Dr. Young was found to have endangered several of his patients by over-prescribing Synthroid. He used it for weight-loss reasons and had actually prescribed it to my father as well. He ended up being responsible for the death of one of his female patients, and lost his medical license. All of his other patients had to be further diagnosed to see if they really needed the medication and it was found that such a large percentage did not.

    So please be careful. I love that you treat the patient and not the monitor. Any good nurse or caregiver does this, however please do so with caution when some of these medications are prescribed.

    I do believe we know our bodies better than anyone else and we usually can understand if some of the changes are helpful or hurtful. Some people trust their Doc's and follow whatever regimen they are given with no questions asked. I do believe that knowledge is power and even when we feel so tired and weak, anytime we can put towards research could benefit us in tremendous ways.

    Thanks for sharing your thoughts Gail.


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