Thyrotoxic Myopathy

Hi, I'm new here.

Diagnosed with hyperthyroidism back in September - Grave's. My T3 & T4 levels were so high they were off the scale and I ended up being taken into hospital as an emergency just before I was diagnosed - thyroid storm but undiagnosed at that time. It was awful. Been on Carbimazole since then and thyroxine not euthyroid yet but I am hoping I will be soon.

The toxic levels of thyroxine have caused muscle wasting (myopathy) and pain in my leg and arm muscles, and across my upper back. Does anyone on here have any knowledge or experience of this, and more importantly, any advice? Thanks.

17 Replies

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  • I really know nothing, but you might find something of use here:

    thyroidmanager.org/chapter/...

    If not in the actual linked page, possibly elsewhere on that site. Or in one of the references from it.

  • Thanks. Spent a while researching this website yesterday and it had a lot of good info.

  • Block and replace (Carb and thyroxine) didn't work for me so I opted for RAI.

  • I experienced this a few months back, it was my right upper leg muscles and my right arm muscles with extreme pain in the joints even when trying to lie completely still and not move. The Carbimazole did decrease my T4 levels within a few weeks and the pain went, my muscles gradually recovered - we have a lot of stairs in our house which I really struggled with but they probably helped my recover! Unfortunately my liver reacted badly to the Carbimazole and I had to come off it and have a TT but it had worked. I acted on the fact that my levels were decreasing so it would go and tried to keep as mobile as I could.

  • Thanks for replying. This sounds similar. I just really wanted some idea of how long it might be til these aches and pains disappear and what I can do to help it. I'm hoping 18 months on Carbimazole will fix me. It's a long time to wait and I'm hopelessly impatient but I want the chance to be medicine free long term if at all possible. It may not work (been told I have a 50:50 chance of success) and then I'll have to choose between radio iodine or surgery. I don't want either at this point in time.

  • Everyone is different as you know and will respond differently. Lots of people do well on the treatment you are having, I don't know statistics but there are positive stories out there!

    I looked back in my diary and four weeks after my muscle pains and weakness was at its worst I had gone to a parents evening at the school requiring a lot of up and down stairs, never mind thinking skills, and I had managed that fine from a physical point of view. As there is no nerve damage ( nerves cells don't tend to repair very well at all when injured) in this case it's as if the muscle has been 'poisoned' by the thyroid,( someone correct me if I'm wrong...it's just how I saw it!) the muscle is severely weakened or wasted as some say. Muscle can be built up again by jus increasing its work each day, taking it easy as overdoing it will set you back. That is where my stairs came in, initially I did each step at a time, actually lifting my left leg each step wth my hand as it hadn't the strength to lift itself! And then holding onto the rail as tight as possible I might add 😬 And I could only manage that once a day but I just kept doing a bit more each day. Now I am doing them lots of times daily, at speed, it is three months since I was at my worst with my muscles. I would say that I have other symptoms and am not yet completely back to what I was, but they actually are minor compared to the muscle pain and lack of mobility I had.

    I have learnt a bit about how complex the thyroid problems can be and I don't see any quick fix but there are people on here who proactively understand and manage their symptoms and they inspire me to want to do likewise!

    Read up and investigate (as you feel up to it ) and you will be better able to make decisions if needed. Hopefully you will see small improvements and then bigger ones soonXx

    '

  • Thanks WobblyX (love the name). Exactly how I feel some days!

    The stairs is a good idea. In hindsight, a few weeks ago I really struggled to get upstairs and, like you, had to hold on very tightly to help pull myself up. I'm slightly better now as I don't have to stop so much and don't pull so hard. It's weird - I always took the stairs at a run or 2 at a time. There is just no way I can do that just now. Sometimes I think I'm being silly and really try to give it a go but there's no power there at all. It's hard to describe to someone who hasn't experienced it. For me it's not the same as a severe tiredness, it's different. I'm going to start stairs exercises today. Thanks.x

  • Thank you. I've read that physio can help but I'm just wondering if the muscles go back to normal on their own when things start to settle down. I'm confused because I understood the muscles are wasting, ie they are damaged, and this would need some intensive physio to repair. So depressed with the whole thing.

  • Welcome to the group StellarLass,

    I'm in remission from Graves and was treated with block and replace. I felt really well on it once I was taking the right amount for me - 40mcg a day carbimazole and eventually 75/100 mcg a day levothyroxine - and I'd say was very successful.

    Before I was diagnosed I was really ill, I had been getting the run around for ages, I had so many vague symptoms that I'm sure doctors thought I was a real hypochondriac. I saw one in August who said 'you're needing you ur holiday'.

    Then when I finally had melt down one dark night in November and nearly killed myself while I was driving, I was lucky enough to see a doctor who knew exactly what was wrong and within three daysI had blood tests, was on carbimazole and was waiting for an appointment with a consultant. It frightened me when I realised that things could have turned out very differently if I hadn't just had a near miss.

    My muscles were awful, SO weak. I used to get up every morning feeling like I'd been run over by a couple of buses. Photography is my hobby and if I got down to ground level - it was fungi season - I just wasn't able to stand up again. I either had to shout for my husband to come and haul me up or make sure I was beside a handy tree. I just thought I had too much gear in my back pack. In actual fact my leg muscles were pretty much wasting away, Back then I had no strength to do anything really.

    Once I got sorted out - that took about 11months - my legs went back to normal without me doing anything special. I kept going to my weekly Pilates class, my teacher is a physiotherapist so everything was tailored to suit me and I was really only just ticking over but I did it to prove that Graves wasn't going to stop me doing the things I enjoyed. I also keep going to the gym but again it was mainly to meet up with my gym friends for a cheering chat, I cut down totally on the effort I put in, I was really weak but determined to do the things I liked. I have to say I didn't do much in the house at this point, my husband shopped and pretty much cooked, I tidied round a bit because he wasn't much use at that sort of thing.

    I didn't think I would ever be 'normal' again but one day I realised I was. It took a while for my body to feel normal after I stopped my block and replace but I had been having symptoms for so long before I was diagnosed, I was really ill by the time I couldn't go on any longer so my body hadn't been normal for a long, long time which is why I think it didn't recognise what 'normal' was.

    So just hang in there and things ought to work for you. When I was given the carbimazole I was told by my pharmacist to take vitamin C so I always took a couple of high dose (1000mcg ) slow release vitamin C capsules every day. I also took ubiquinol or CoQ10 every day and ate as healthily as I could. I used to do a lot of long distance walking and I have to say it did take a couple of years before I felt fit enough to want to get out and do that again but I'm back on the long distance trails now.

  • Fruitandnutcase, Thanks very much for that reply. That's really helpful. I have mixed feelings about it but at least I can be hopeful of getting back to normal eventually. Good to hear you are back doing normal physical stuff now. I was scared by some reports that it may take a year. I honestly think it's going to be much longer, possibly because my thyroxine levels were so high. My GP and consultant said they'd not seen levels so high before. How long was it from your diagnosis til you felt you were back to 'normal'?

    I'm a teacher and I just can't contemplate returning to work any time soon. Like you, if I end up on the floor, I need help to get up. I'm really anxious about going out walking on my own because I feel so weak and shaky. I feel so pathetic. It's so debilitating. I really had no idea this was coming to me.

    Luckily, my GP diagnosed me very quickly and almost saved my life I think. She recognised the trembling and ordered blood tests based on that right away. Also my consultant has been fab: very informative, approachable etc. She was the first one to mention myopathy however didn't say any more about it at that time. My GP has referred me to physio but perhaps there is no need. I am keen to accelerate the recovery process but after more research, maybe it's pointless. I'm still not stabilised yet and for all I know, there is still active muscle damage going on now. I want to scream. It's so frustrating. (I'm a very impatient patient.)

    I will chase up the vitamin recommendations - thanks. No-one has mentioned that before.

    I've read somewhere else about a ?herb beginning with B that some people swear by. Not sure about that. Also read about LDN Low Dose Naltrexone on stopthethyroidmadness.com/g... but I've no idea what that is. Something else I need to ask about.

    Thanks again. Keep well.

  • I take ldn for Hashi's. It's a medicine that's been used to treat addiction for many years and there is a theory that in very tiny daily doses it can heal or balance immunity. I think it's used on a fairly legit/conventional basis to treat MS, it's just its use in the further reaches of immunity treatement that is less well-documented.

    My last blood test showed very high antibodies and at the time I had been taking a capsule version of ldn that was not working for me. I'm now on the new sublingual drops and I've had some side effects that tell me they're working so I look forward to the next bloods to see if they have any effect. They deffo seem to make my levo go further. I sometimes have to reduce my levo dose on ldn, and when the caps weren't working I needed to increase the dose (my tsh went right up).

    Happy to answer any questions about it (though I must admit all the info is a bit sketchy and in my experience no one will commit to knowing exactly what it does or doesn't do).

  • Thanks. The consultant hasn't mentioned it as an option so I will ask the next time I see her and report back.

  • Not sure how long it took until I felt more normal. It took a while though and the first time I needed my Levi increased I got a lot of the hyper symptoms - shaky hands, pounding heart - came back again so I thought I must be becoming hyper but someone on here said I was probably needing more Levi which proved to be the case. Same thing happened next time I neeed an increase. I'd say it took at least six months on block and replace before I felt half way normal.

    I'm a retired teacher - I was 64 when my Graves kicked in and I was working as an exams invigilator and I ended up cancelling all of the work I had booked for the January exams because I didn't know how I was going to feel but by the summer exams I was feeling fine and did them.

    There is no way I could ever have taught full time feeling as I did. I was completely and utterly exhausted, a tiredness only someone who has had what we've got could even begin to understand. Plus I was snappy and irritable, the tiredness was the worst though.

    I can't imagine being able to accelerate the recovery process. I think you need to realise that you are really very ill when you have Graves, I lost so much weight that I looked really good but I was really ill and just felt wiped out. I slept a huge amount of time, especially at the beginning. I think you have to accept that you are actually very ill, be kind to yourself and just wait until your thyroid gets back to a decent level.

    I went totally gluten free a year ago when I developed inflammatory arthritis - Graves was only one of several autoimmune conditions I have and I've been testing my blood throughout the year using the Blue Horizons home fingerprick test and have watched my thyroid antibodies steadily drop.

    My antithyroglobulin abs is still too high at 140.8 when the upper limit is <115 but it is a fraction of what it used to be and my antiperoxidase abs is now <5 when the upper limit is <34 so rightly or wrongly I feel I've done something to help my body.

    I think recovery just takes time and being kind to yourself and to a certain extent being a bit selfish. I'd say so the things you want to do not all the things you feel you ought to do, although saying that I didn't have to get myself up and out to work every day or look after a family as my children are grown up and no longer live with us.

    Haven't tried LDN although I've read about people taking it.

    Graves is such a rotten condition. Make sure you get and keep a copy of all your blood test results, you are entitled to have them, read as much as you can about your condition so that you become an expert, I kept a diary of how I was feeling, nothing more than a few lines every day, that was useful when discussing how I was feeling with my doctors. It was also useful to see how increasing my Levi was helping, and it let me see how much I had actually progressed even when I thought I hadn't progressed at all. Are your B12, vitamin D ferritin and folate all high in their ranges because if they are that will help you feel better?

    Don't just accept your doctor saying your bloods are 'fine' or 'within the range' - the ranges are so wide you would have to be really ill not to fit into them and one thing my diary showed was that I felt much better when my bloods were at certain levels. Unfortunately the NHS and even 'good' doctors and I'd say that mine were good, don't go in for 'fine tuning'. Once I was 'within the range' they seemed to be happy with that even if it wasn't the point within the range where I felt best :(

    Anyway, good luck with it all, hopefully you will see a big improvement soon.

  • Thanks again. You've been very helpful.

    Had my bloods done again today and really hoping that they're now at a level I can reduce my Carbimazole. Then I might feel I've moved on a stage. I'm being told to accept how seriously ill I've been but I find it hard I suppose because at times, when I'm not doing very much, I feel better and a bit of a fraud. But then when I do the slightest physical or mental activity, I feel shaky and dizzy and then I lose all my confidence again. It's horrible.

    I like the idea of keeping a diary. It will be good to refer to when I see the doctor, and to look back on. I'm not normally forgetful or easily confused but with this condition I definitely am. I tried an easy Sudoku last weekend and failed. I couldn't finish it. Then I got upset again. I normally do the difficult ones. It's at these times I realise what a massive change this disease has caused in me.

    My other blood levels have previously been good (iron, vit D etc) but I will ask for them to be checked again and that may give me some other pointers. Thanks.

  • its very hard to go with the flow especially as I imagine you are a busy person if you teach. I know used to be. I was so forgetful and dozy I can remember being worried that I was getting dementia. It's hard to believe now that I was so far gone. I couldn't concentrate, forgot things, etc, think you know what it's like because it sounds like you are there at the moment.

    I didn't ever reduce my carb. I stayed on 40mcg along with my levothyroxine which was supposed to be 75mcg alternating with 100mcg right up until the day I saw the consultant who told me to stop everything. So next morning ninstead if reaching out at 6.00 to take my levothyroxine on an empty stomach then having my carb at breakfast I didn't take any pills at all. Have to say it felt a bit odd to go from all that to nothing.

    At that point it's just a case of wait and see and fortunately I'm still waiting. Like you say, you only feel good because you're not trying to do anything and you're definitely not a fraud.

    I have to say I never slept as much in my life as when I was first diagnosed and I slept a lot even as I started to get better. I'm sure people who knew me raised their eyebrows when I said I didn't want to do things because I was tired but I didn't care, I just did my own thing and if they thought I was giving in then tough.

  • Yes, I've been worried I have dementia!

    Regarding the sleep thing, when I was most ill, I never slept at all. It was very strange. I really never slept and the funny thing was I wasn't at all tired. Not at all. For weeks. My consultant explained it but said although I didn't feel mentally exhausted, it was very bad for me. I was offered sleeping tablets but declined. It has settled down and I am getting a good night's sleep now thankfully. If I go hypo, I think I'm expecting to feel more tired then, so not looking forward to that.

  • Don't worry, that dementia feeling will go once your thyroid levels get sorted out. Pretty scary feeling though.

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