Medication, joint pain and muscle cramps

I've taken myself off Levothyroxine because of the horrendous joint pain and leg cramps I've been enduring for the last couple of years. I've been off it now for 2 weeks and the joint pain has virtually gone, as have the cramps. I was taking 100mcg levo with 40 T3 prescribed by my GP - I had total thyroidectomy 30 years ago. The problem is that my hypo symptoms are returning with a vengeance - extreme tiredness, freezing cold, brain fog, vision problems etc etc. What to do? I can't take levo because of the pain in my knees - some days I can't walk because of it and the leg cramps are agony. My GP refuses to prescribe a higher dose of T3 (because of cost!) and doesn't believe the side effects of levo I am experiencing. Does anyone think NDT would be beneficial and, if so, where could I obtain some without prescription - my GP has never heard of NDT! Any help very gratefully received.

13 Replies

  • Oh... So your doc has been living under a stone. Has he? If you are taking t3 the its possible the t4, levothyroxine isn't needed to be converted to anything, so it just lies around and gives you muscle problems... ( often diagnosed as fibromyalgia).. The late dr John Lowe had a fair bit to say about this and I believe he lived on t3 only as any t4 caused problems.

    Also, it Might be worth you getting tested for rt3 and free t3 at the same time to see if rt3, caused by excess t4 is causing a problem?

    I think in your shoes I would try t3 oly for a while. (6 months) and see if there an improvement once all the t4 is out of your system.....

    Also, what are your vitamin levels like?

    Xx. G

  • Thanks for your response, Galathea. My GP isn't particularly knowledgeable about thyroid (most of them aren't, I understand). My last visit to an endocrinologist (18 months ago) was equally frustrating but eventually resulted in me being prescribed T3. My GP was reluctant to prescribe T3 without the backing of the endo (cost reasons) and it is very unlikely he will prescribe a higher dose and is keen on prescribing thyroxine. I have tried T3 alone in the past but I don't think it's enough, and if I increase the dose, slowly, beyond 40mg, I get the jitters. I went to see Dr P in 2013 and it was his opinion that levo has become toxic to me and suggested I try T3 alone. My GP wasn't interested in Dr P's opinion!

    Anyway, the last thyroid function test I had in November 2014 gave the results:

    Serum free T4 level 7.8 pmol/L [Abnormal result] 12 - 22pmol/L;

    Serum free T3 level 5 pmol/L 3.1 - 6.8pmol/;

    Serum TSH level 0.01 mu/L < [Abnormal result] 0.3 - 4.2mu/L

    His solution to this was to prescribe 100mcg thyroxine which I have been taking since then, resulting in the leg pains/cramp. So I'm back to square one - I've been trying to sort this out for the past 5 years as I was on thyroxine alone for 25 years prior.

    If I don't take T4 I get all the hypo symptoms and am dragging myself around, but I have little/no joint pain or leg cramps which are very distressing. I don't know what my vitamin levels are - is this significant? The last time I had them checked, 2012/2013 I was told they were 'fine' and that I was one of the few patients whose Vit D3 was good. Added to the mix I have rampant inflammation:

    Erythrocyte sedimentation rate 18 mm/h [Abnormal result] 0 -

    15mm/h .

    I'm beginning to despair of ever feeling well. I just wondered whether I ought to try NDT. Sorry for the epistle!

  • If I were you I would take the T3 only at present until you figure it out. It's not good to withdraw from thyroid hormones although I quite understand why as I had similar pain as you although I didn't have a TT when I was on levo. Just because doctors say so, it's we who suffer not them. In theory levo should work but we are dealing with a synthetic hormone which is not always conducive to some of us. What if you source your own T3 plus whatever the GP prescribes. I will give you a link of someone who also had a TT and her experience which resulted in a Petition to the Scottish Parliament. Maybe your GP would like to read it......

    Before your op I believe nothing is forthcoming about the after effects of no thyroid gland! As for the British Thyroid Association's Guidelines - again no thought appears to be given to those for whom levothyroxine is like a poison. You see NDT was the ony possible replacement since 1892 up till the 50's/60's when through the promotion of Big Pharma who are mainly interested in profits gained a huge foothold but levothyroxine has been withdrawn numerous times and despite this Rebuttal and 3 requests for a response - it was ignored completely.

  • Thank you Shaws. I know it's not ideal to discontinue any thyroid medication abruptly but I was in such pain I had no choice and the fact that the pain/cramps have all but gone away vindicates my decision. But it leaves me in a quandary - I don't believe I will get much support from my GP based on past experience so I have to try to find the best solution myself. I did get Cynomel for a while from Mexico as recommended by Dr P but it seems this is no longer available from that source. I don't know anywhere else I could source it from. If I don't obtain a reliable alternative to thyroxine very soon I'll run out of my T3 medication and probably come to a full stop altogether, or have to go back on thyroxine which I am loathe to do.

  • You can put up a new Post asking for Private Message if anyone knows a source for your needs.

  • Believe me, I know why you stopped as I had the same experience on levothyroxine. When you are new to thyroid hormones you are not expecting to feel worse. Joint/muscle pain could only shuffle about, nor raise arms to comb hair, insomnia etc etc. I am now fit and well on T3 only but some cannot tolerate T3 either. Our bodies are all different and accept some medications but not others.

    I hope you find your solution soon.

  • Thank you. It seems Levothyroxine became toxic to me after taking it for 25+ years - I felt very well on it for a long time but these last 5 years or so have been hell. At one point I was housebound because my knees and feet were so painful. I've managed to lose 4 and a half stones in the last year because my GP said it wasn't the medication but the weight that was causing my 'arthritis'. Losing weight has definitely helped but even now the pain can be excruciating and the muscle cramps just so debilitating. So I knew it was thyroxine and coming off them has proved this to me beyond a doubt. Why won't GPs listen to their patients? I've been treated like a nuisance and a crank, and I'm neither.

    Without this site I don't know what I'd have done. So, thanks again - I'll carry on increasing the T3 slowly, which I will have sourced elsewhere and hope I can eradicate these hypo symptoms before the depression kicks in.

    I wish you continued good health.

  • This is just a guess: 25years ago you would probably have been prescribed Eltroxin - the brand name? If so, it was withdrawn in the past couple of years and many have said their symptoms returned as they had to take an alternative levo and there are now no brand levos. MP who were supplying the Brand said that their generic levo was the same but many people, me included, said there was something diferent as they were getting new/other symptoms. Fillers/binders can be the cause lots of time and not the hormone itself. I hope you feel better soon.

  • Marlathome, I was doing well on 60mcg T3 post thyroidectomy but had dreadful problems when I was switched to 200mcg T4 post RAI. Adding T3 improved brain fog but didn't touch on the physical pain and symptoms. I stopped T4 for 3 months to clear the build up of T4 and have been able to tolerate T4+T3 since.

  • That's interesting, Clutter - thanks for responding. Can I ask did you build up gradually to 60mcg T3 or start taking it at that dose? When you stopped T4 for 3 months did you just stay on the 60mcg T3? How did you feel just taking T3 during that time? What made you decide to start taking T4 again? Sorry for all the questions!

  • Marlathome, I was prescribed 3 x 20mcg daily after thyroidectomy. I had no adverse symptoms from the T3 and was recovering although still unwell. I felt poisoned when I was switched to Levothyroxine and, when I stopped it for 4 weeks for more RAI and felt better, I suspected T4 was causing my problems although endo said it couldn't possibly be the Levothyroxine.

    I went back on 60mcg T3 but continued to feel very ill and tried various doses up to 120mcg. I didn't feel hyper but no improvement either so went back to 60mcg.

    I thought all T4 would be out of my system within 8 weeks so was disappointed not to feel better and decided to stop T3 too. Within a week symptoms were improving and completely resolved within 2 weeks off meds. If I'd been a little more patient I may have achieved the same result without going hypo, but it worked so I don't regret it.

    I thought clearing the build up would enable me to resume T4 but I had palpitations and shortness of breath within hours. On the second day I took 20mcg T3 with the T4 and this calmed the adverse effects.

    Although I felt well enough on T3 only I prefer the T4+T3 combination as I like the security of having some T4 in my system should I be unable to take T3 for a couple of days.

  • Thank you for this and your PM - incredibly helpful and generous to share your knowledge and experience. Last question! How do you take your medication? I took both T3 and levo on waking in the morning and 1 hour before food as directed by my GP. Is this good practice? I'm definitely not taking levo again but your post has given me hope - heartfelt thanks x

  • Marlathome, Shaws and other members take one daily dose but my endo advised splitting T3 dose when taking more than 20mcg, although I was comfortable taking 40mcg in one dose a while back. I currently take 20mcg + 100mcg T4 on waking and 10mcg at bedtime. I take one hour before, or two hours after, food and drink (most of the time).

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