Levothyroxine caused muscle weakness and pain

Been on levo (100mcg) for 7 years after routine blood test showed elevated TSH (8-ish). 18 months ago developed numb toes, chest cough, increasing muscle weakness and muscle pain. Chest and neurology investigations showed no problems. Tried meat/fish/veg water diet with no benefit. Feeling completely dreadful and referral to rheumatologist forced further reflection (mother died at 56 following similar treatment and diagnoses - I'm 58). Reduced levo to 50mcg for a couple of days. Immediate improvement in toe sensation and muscle pain so stopped taking completely. Muscle pain gone. Sadly TSH 65 4 weeks later and 96 8 weeks later and increasing hypo symptoms (cough, sleepy, lethargic). Have now been prescribed 10 mcg liothyronine by GP after correspondence with endo at local hospital. Have arranged to see the endo privately next week (can't wait for NHS appointment due January 2015). Really appalled at the impact levothyroxine had on me.

19 Replies

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  • Welcome to the forum, Loueldhen.

    I was also unable to tolerate Levothyroxine (T4) on it's own but after clearing the build up of T4 from my system I'm now doing well on T4 + T3 combination. It seems the T3 calms the adverse effects I experienced on T4 only as well as improving my FT3 which was below range on T4.

    Have you had ferritin, vitamin D, B12 and folate tested as low levels/deficiency are common in thyroid patients and can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms?

  • Hi clutter,

    This may seem a stupid question but how did you "clear" T4 build up and how did you know when to commence combination treatment? I'm off Levi about 6 weeks now for same reasons.

  • Chloemcm, I thought it took 8 weeks to clear Levothyroxine from your system so I stopped taking Levothyroxine and substituted T3. If you have rT3 it can take up to 14 weeks off T4 to clear it.

    I still felt very bad after 10 weeks and decided to stop T3 too. After 7 days a lot of the most troublesome symptoms had cleared and by the second week all had and I felt very well. I'm not sure why I stayed off meds another 2 weeks but I wasn't feeling at all good in the 3rd and 4th week. I'm thyroidless so I knew I had to start T4 again but palpitations and shortness of breath started within 7 hours. I put up with it for 2 days and then added T3 which calmed it all down.

  • 10 mcg of t3 is roughly equal to 40 or 50 of levothyroxine... According to what the endos believe, so its a bit of a low dose.

  • I agree with Clutter - so many symptoms we experience with thyroid issues are caused by deficiencies in B12 - VitD - etc. Poor absorption invariably accompanies thyroid problems.

    Do hope you feel better soon....

  • The muscle pain was caused by the levothyroxine. It stopped over the course of a few days when I stopped taking the pills. I still have weakness because I haven't been able to use the muscles properly for years because of the pain. Pain is on the manufacturer's list of possible side effects. I expect it took me a long while to suspect it because I had taken it for years with no noticeable side effects (or benefit?). It didn't enter my GP's head at all. I had lots of wasteful tests looking for a solution.

    I would guess you know 'T4 has cleared from your system' when your blood results show TSH rising and the hypo symptoms mount. I hopped around like a bunny for a couple of weeks because I was so happy to get a solution to the pain but have slowed up since.

    The 10mcg is a starter dose I hope. I would consider combining with the T4 but will be vigilant about side effects. I would say no positive effects yet (2 weeks) from the liothyronine.

  • Loueldhen, I knew T4 had cleared when the side effects cleared. Didn't feel hypo for the first two weeks but very hypo after that. TSH was >107 because I don't have a thyroid but was suppressed again within 4 weeks of resuming T4+T3.

    10mcg T3 is roughly equivalent to 30mcg T4 so you are very undermedicated after being on 100mcg T4.

  • I find this really worrying and confusing. The symptoms you describe are more like before you start on Levo at the correct dose. It just shows how important it is to go back to the GP with any painful symptoms experienced whilst on Levo and most important of all a yearly visit for new bloods to be taken if you are OK or not. You say you have taken that same dose for 7 years until now, have you always had bad symptoms whilst taking it, or is it just now. If this drug has done you any harm what hope for the rest of us. Dosage is so important and if wrong either way causes problems to our health and well being.

    I wish you all the best with the endo and hope your problems are soon resolved xx

  • Dear lucindajethol - sorry to cause confusion but I just wanted to warn people. I consider myself pretty clued up and sensible but it has taken me a long time to make any progress with these symptoms. I had progressive problems, primarily muscle weakness and pain and had been to the GP several times over the last 18 months but reached rock bottom, felt completely knackered, hurt every time I knocked a muscle or joint. The GP sent me for chest X-ray, nerve tests, lumbar puncture, MRI. I had strange blood test results but nothing specific - ludicrous waste of resources. GP didn't question my pre-existing issue or the only medication I have ever taken. TSH results etc ok cos being controlled by the levo. I originally went on the levo because of a routine blood test - not because I had gone to the doctor with any particular symptoms.

    Whenever I have had health issues in the past I go on a meat fish veg water diet to try to resolve it. This normally makes me feel better but this time it resolved nothing. My GP said you must have rheumatoid arthritis - I'll refer you. I also read about levo manufacturing problems, that my formulation was being discontinued and that the number of available products was reducing. Changing brands has always disrupted me. This was the last straw - my mother died after being referred to a rheumatologist who prescribed her Opren which caused aplastic anaemia. The only thing I was 'doing' to my body was taking the 100mcg levothyroxine a day I had been taking for 7 years which the GP described as 'just a replacement hormone' couldn't do harm. I reduced the dose, the pain eased, I stopped taking it the muscle pains went away. In subsequent correspondence between GP and endo at local hospital, letter from endo to GP said 'I have a number of patients who are generally unable to tolerate synthetic levothyroxine'.

    Now the hypo symptoms have started - in my case these are cough, vertigo, dizziness, lethargy, brain fog. I think it picks the weakest links in your system. Through not taking any drugs I can now see patterns from the past from when I have changed dose or brand. I have done so much research the last few weeks. I guess my problem will be diagnosed as autoimmune thyroiditis and hopefully will be able to be treated by T3 or something else - I will report back on progress. Basically autoimmune problems might also explain the weird blood results I had showing antibodies to farmers lung, Q fever (a notifiable disease in the US!) etc etc which merely helped to confuse the compartmental health system we operate under today.

    I'm going to try the diet again - if only to support my body in healing itself and to get the vitamin levels etc checked as recommended by Clutter and Marz. The hypothyroiditis I now see as not the cause - just a symptom to be managed.

    Good luck.

  • Reflecting on this - brain fog must have kicked in big time. Meant to say I now see hypothyroidism as the cause of all other symptoms and if that is properly managed the rest goes away.

  • I have been on Levothyroxine for 9 years with no problems. In June this year I started getting stiffness in buttocks, hips and adductors so bad I struggled to walk. It seem to ease in hips but is know in both shoulders and both knees. I said to my Dr could it be the levothyroxine and they have all dismissed it including the Endo. I'm 50 in the uk and seeing Endo again next Tuesday would appreciate any information I could use to support my levothyroxine theory please

  • I was at my wits end with pain and exhaustion. Wanted to give up on life. I stopped levo as it was the only alien thing I was taking (other than good food).

    With the improvement that stopping levo demonstrated, my GP referred me to an endo. The endo said it's not unusual to be levo intolerant and prescribed T3. I didn't die through not taking levo (had been on 100mcg/day for about 8 years) although I was not working and so could afford to experiment. It only took 2/3 days to feel a reduction in muscle pain (although I feel the muscle weakness has had long term effect). It then took months to get an endo appointment (eventually cracked and went private cos I had been off levo for several months and was beginning to grind to a complete halt).

    I don't see how else you would tell if it's the levo or something else causing your muscle pain without stopping taking it. It helped me solve my problems that i looked back at my mother who died at my age then (56) and looking back I would guess she was levo intolerant, then told she had arthritis, then prescribed a drug that gave her aplastic anaemia and then died. I've not been keen on taking any medications after that.

  • I am 54, in the U.k and wish you all the luck in the world. I have been on this drug for 33 yeas. I fall over all the time, I have muscle weakness and muscle pain. My shoulders, elbows , ankles and wrists hurt, they have got worse over the years. My G.P says it cant be levothyroxine causing it but I know it is. so, , good luck and let me know how you get on and which part of the UK you are.

  • Good luck in trying to persuade any doctors that Levothyroxine is to blame. I am certain it causes all my problems but doctors dismiss it straight the way

  • When I got pregnant when I was twenty one my thyroid became overactive. I have always been a little overweight but at eight months pregnant weighed a mere eight stone. Every time I went to the GP I was told to grow up and stop moaning about sickness and weight loss as I was pregnant. The day after I passed out, was rushed to hospital where they found straight away about me having thyrotoxicosis .I had a swelling the size of an elephants trunk at the front f my neck.

    I gave birth to a healthy son a month later and a month after that I got my thyroid removed. I have been taking levothyroxine for 33 years. I fall over, my muscles are very weak, I have aches and pains. I sleep a lot and I am always tired. I have had numerous tests done , muscle biopsy, electric probes in my muscles, MRI scans, xrays , blood tests over and over again. I have seen numerous consultants but the tests always comes back as inconclusive.

    I fell last week and knocked myself out. I was outside in the street. I have a black eye and bruised hips and a very painful shoulder and elbow and yet they can not find out what is wrong with me. My knees resembles a little boys as they are always full of scabs and scars.

    I am 54 and feel 94, I have no quality of life, no confidence and life has been made unbearable at times because of this drug. The Drs say Thyroxine is safe, that it just replaces what they surgically removed. They are wrong. Until I got pregnant I was healthy and strong now I'm very weak and the worse of it is the doctors don't or won't listen. I wish you all lots of luck in trying to find answers and solutions to the problems this drug causes because it really does take its toll out on you as the years go by.

    I am at the Drs again tomorrow but I'm not sure why I bother, I really don't .

  • I was being outpaced by my 86 year old mother-in-law! Stop taking it. In a couple of days you will know if that makes a difference and can either continue or not. I filled in a yellow MHRA report on the effects levothyroxine had on me. I too had an MRI, lumbar puncture etc. Such as waste of NHS money. Quote from my endo's first letter to my GP 'Indeed I have also seen a number of patients who seem to genuinely be unable to tolerate synthetic Levothyroxine'.

  • If only, I don't have a thyroid gland due to ThyCa 14 years ago. I have to take this hormone but also over the years have had all sorts of problems. Now my thighs ache so much I can hardly walk the dog. Would like totake a natural hormone replacement but am scared to and also I would have to pay for it and am now virtually retired.

  • Ive been on this drug for thirty odd years and fall over constantly due to weak muscles. Ive had tests done twenty years ago and they all came back inconclusive.

    Things have got worse with age, I am 54 although I feel 94 most days !

    I am being sent back to redo all the tests again as I have recently changed GPs and their are no records of previous tests. As with you if I stop the Levothyroxine I feel loads better until the hypo returns. My knees resembles those of a small boys full of scars and I have stopped going out of the house because of the falls.. I need thyroxine as my thyroid was removed thirty years ago and my GP refuses to give me a prescription for natural thyroid hormone. My life has ended, as I can do little for myself now. I just wanted you to know that you are not alone.

  • Have you tried not taking it for a few days? It's not a long term solution but if it improves the way you feel I don't see how the gp can ignore that. They should refer you to an endo at least.

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