Hypothyroid myopathy

I have just learnt about hypothyroid myopathy, which I think might be the cause of the muscle weakness and pain I get. The Rheumatologist said it was Fibro. but gave me Hydroxychloroquine to try. It helps a lot, though I still have some pain with walking and stairs etc.

Has anyone else experienced hypo. myopathy and found a solution?

Thanks for any comments on this

8 Replies

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  • I am not medically qualified but most times, symptoms are diagnosed as separate to our thyroid hormone dysfunctions. Pain, muscle and joint are common until you get onto an optimum. If you have Fibro, frequently it is another name for a clinical symptom as many doctors are unaware of symptoms (over 300). Most times some T3 (liothyronine added to levothyroxine) may be very helpful.

    emedicine.medscape.com/arti...

    You should be given an adequate dose of levothyroxine which is gradually raised until your TSH is 1 or lower, and if you still suffer pain, as stated above, liothyronine (T3 - the only active thyroid hormone) might relieve them.

    thyroiduk.org.uk/tuk/about_...

    We have to read, learn, ask questions as doctors don't know clinical symptoms of hypothyroidism. Thyroid hormone replacement to an optimum dose can relieve all our symptoms.

    When you are due a new blood test make the earliest possible appointment and fast but you can drink water. Allow 24 hours between your last dose of levo and the test and take afterwards. Doctors mainly only use the TSH (Thyroid Stimulating Hormone) to adjust our levothyroxine. So by getting the earliest appointment the TSH is highest which drops throughout the day.

    Levo should be taken first thing on empty stomach with one full glass of water and wait about an hour before eating.

    Always get a print-out of your results from the surgery (we are entitled) with the results plus the ranges (ranges are important as labs differ) for your own records and you can post if you have a query.

  • Thank you Shaws but I have been on T3 for a very long time now. My TSH is always below 1.

    I am on 62 and half Mgs. T3. If I go any higher or lower I don't feel well.

    The Hydroxychloroquine helps a lot but doesn't get rid completely.

    I am doe a blood test on Friday. I requested a T3test but the Dr couldn't guarantee it would be done. I will get my results and post them if appropriate.

    Thank you

  • I assume I must have had myopathy but that word was never mentioned.

    I was worse when given levothyroxine. I couldn't move with stiffness/pain/muscle and joint pain - couldn't even comb hair. I am glad to say it resolved completely when on T3 only. I don't take UK T3.

    Sometimes fillers/binders affect us but maybe if you try taking an antihistamine 1 hour before your next dose and if it relieves your pain it must be the fillers/binders in the liothyronine.

  • good advice

  • Everdean,

    There are some posts about hypothyroid myopathy in healthunlocked.com/search/h...

  • Thank you both. I take the Greek T3 Shaws but if I take the Uk ones again I will try that suggestion.

    Thank you both again.

  • if my b12 or d3 is too low even low normal or ferritin serum.....I feel TERRIBLE and have pain all over.....stretching daily, vit c, b complex, d3 5000 daily is key for me...stretching is key as you get older and at least 8 hours a sleep crucial.....

    I had slow digestion that made my vitamins low and don't get a lot of sunshine but even roofers can test low for d3. I take d3 5000 with k2, that's important....k2 with it

    I take 2 tbsp. of braggs apple cidar vinegar with water and a splash of lemon juice to help with that or you can take digestive enzyme caps with every meal. Common in older generation .

    I also take probiotic nightly before bed since their is a gut connection to health as well.

    and I replaced sugar with --Now brand-- non alcohol liquid STEVIA in my tea......since sugar causes inflammation...and I cook sweets with the powder kind...take very little and my cobblers are awesome with it

    I also rub--- health and wisdom brand-- liquid magnesium on my skin...that is a god send for pain and it goes into cells ......it is like water and you can rub anywhere you have pain ad awesome.....

    these are suggestions I have found helpful with aging etc.....and my dr test dhea free t3 free t4 tsh and hormones every 6 mths...I was also low in dhea so he put me on 15mg of that a day....It helped things...told me to take fish oil and flaxseed oil daily

    and I take a green non gmo powder drink a day in a little orange juice

    Life changes quickly and we have to do more to keep things rolling along so I understand the frustration.......

  • Thank you jacrjacr. Amazing.

    I do most of what you do but not a couple of things so will check the out.

    Thanks again

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