Reading these posts makes me wonder, how many people have been diagnosed with fibromyalgia after taking levothyroxine ??
I've been under active over 20 years, currently on 300 mcgs reduced from 400 but recent tests show levels climbing so it'll probably be put up again !!...at some point of an unbearable pain flare up, 8-10 yrs ago, my GP diagnosed fibro, and since then everything has been put down to that !! A lot of the symptoms I've read over this and other thyroid sites have described the same ?! Begging the question, is there a link ??...dont know if it rings any bells with anyone,.. . just a thunk xxx
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Dizzydawnc
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In honesty I've never seen my results !!, I had a phone consultation with a different GP at out surgery for an update on my meds, when I told her the amount of thyroxine I take she went silent !! Then asked when I last had my bloods tested ?, I said a couple of weeks ago, to which she replied " no your levels" ?....apparently I have only been having full blood count done !!...in so glad I was tagged to this site, finally I might just get some answers xxx...thank you
I think the answer is yes there is a link ( tho saying so on the sister healthunlocked Fibromyalgia forum gets a warning message from one of their administrators!). I have had diagnosed hypothyroid (and Hashimoto's) for twelve years: on 150 mcg levothyroxin I had private blood tests which showed I was very poorly converting T4 to T3( ratio 5.39 : 1), saw a private endocrinologist who instead went down the sleep apnoea ( negative) and metformin route. Over the following years I was treated in relation to my TSH,and levothyroxin reduced. But I developed lots of pain in legs/ hips, plus gall/ bile problems ( see profile for details)... just over a year ago I was diagnosed as having fibromyalgia. This was disabilitating, spent last winter virtually unable to walk, so started researching possible ways to improve/ reverse these symptoms. I discovered Dr Lowe's work, and Q&A s, archived on the Thyroid Uk website: he believed the vaste majority of fibromyalgia suffers were undiagnosed or undermedicated hypothyroid or hormone resistant, and treated them accordingly to get their FT3 raised. This is the route I have gone down, raising my Levothyroxin to above the FT4 range, yet FT3 still remained below 5; then I added T3, bought abroad. Feeling much better on 75 mcg levothyroxin and 25 mcg T3 (Tiromel), still got away to go, but after 12 years I cannot expect an overnight 'cure'. Have you had your full thyroid hormone test recently- on 300/400 mcg levothyroxin it sounds like something is struggling- what is your FT3 level? I have had Medichecks lab tests for thyroid and Vit D, B12, folate and ferritin, improved Vit/ min levels to optimum- might be worth you getting this done and consider whether you need to add T3 too.
If you are suggesting that taking levo causes fibro, then I think it's highly unlikely. It's more likely to be due to the fact that when someone is taking levo, but still doesn't feel well, the doctor will 'diagnose' fibro because he doesn't know much about thyroid. That gives him an excuse to more or less ignore the patient, and blame all subsequent problems/symptoms of the fibro, for which there is no proof of having it - blood test etc - so he can't be proved wrong; no specific treatment that he has to bother with and certainly no cure. It is a lazy doctor's way out of actually doing his job. It is an ignorant doctors way of looking like he's doing something when he's totally out of his depth. It's an excuse for a diagnosis that gives doctors a get-out-of-jail-free card and makes life easy for them, and condemns the patient to a life-time of suffering with no help. That's why people get 'diagnosed' with fibro after taking levo.
I have been taking levothyroxine 28 years. 25 years no symptoms I couldn't handle. Then, wham!
Long story short, finally diagnosed, autoimmune thyroiditis and adrenal insufficiency (too many symptoms to mention).
During the search for answers, I was also diagnosed Sjogrens syndrome, and yes, a locum consultant added fibromyalgia (his opinion not sure if on my notes - lol).
Claire Raynor (RGN, Author, and Agony Aunt all health issues - since deceased), wrote about thyroid and fibromyalgia. She suffered with both, as well as breast cancer,... She did live, (and write), to a good age. I wonder if she found a link.
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