# Thyrotoxic Myopathy - How long does it take to get better and be able to exercise?



## RH789 (Jul 30, 2012)

Has anyone here had a thyrotoxic myopathy? :sad0049:

I was placed on thyroid medication for 2.5 years and I should never have been placed on it. Now, I have a thyrotoxic myopathy as evidenced by an EMG from a neuromuscular neurologist.

It is now five months off the thyroid meds and while I certainly feel much better off the medication, my muscles are still very weak.

QUESTION: Thyrotoxic Myopathy - How long does it take to get better and be able to exercise?

Wikipedia said it could take up to 12 months. Endocrinologists and neuromuscular doctors seem clueless, so I am hoping previous patient experience might give me some sort of time frame.

Please note: My CK level was always very normal, so I do not expect long-term damage.

Thank you! :hugs:


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## StormFinch (Nov 16, 2012)

You keep posting the same question, but don't revisit your old threads where people have replied. You might try looking at your other threads to see if someone has answered your question.


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## RH789 (Jul 30, 2012)

StormFinch said:


> You keep posting the same question, but don't revisit your old threads where people have replied. You might try looking at your other threads to see if someone has answered your question.


Hi, I am not seeing any of my questions related to or concerning thyrotoxic myopathy which is a pretty specific diagnosis. I just replied to another member's thread, but it was not my original question and the thread is almost a year old so I don't know if anyone will respond. I do revisit my old threads and everytime someone responds. I do not see any responses for how long a thyrotoxic myopathy recovery may last.


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## Octavia (Aug 1, 2011)

RH789, I do not recall this diagnosis coming up here very often, which may explain why you're not truly getting a first-hand answer.

I hope you find relief soon.


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## RH789 (Jul 30, 2012)

Octavia said:


> RH789, I do not recall this diagnosis coming up here very often, which may explain why you're not truly getting a first-hand answer.
> 
> I hope you find relief soon.


Thank you! I hope to get relief soon as well, which is why I am so desperate for help on this website that someone might be able to give me some kind of answer. And, of course, I ask this question in the hopes that no one is inconvenienced or offended in my search for help.


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## StormFinch (Nov 16, 2012)

RH789 said:


> Hi, I am not seeing any of my questions related to or concerning thyrotoxic myopathy which is a pretty specific diagnosis. I just replied to another member's thread, but it was not my original question and the thread is almost a year old so I don't know if anyone will respond. I do revisit my old threads and everytime someone responds. I do not see any responses for how long a thyrotoxic myopathy recovery may last.


That discussion was held in one of your other threads. My mistake so I'll answer your question.

I was informally diagnosed with it, as in I didn't have the electromyography, but since I had all the signs and symptoms... I had it about a year before my thyroidectomy and 10 months after surgery I'm still dealing with it. It's gotten better, but it's slow going.

The key to "getting off the couch" is to get off the couch. If you haven't already, start small with gentle stretching exercises like yoga for at least six months. Then add weight bearing exercises, but only at the lowest amount of weight and reps. I currently use 3 lb weights for arms, back, etc. and walk for legs. If I use any gym machines it's the ones that you can do with bar only, no weights pinned. It's a long process, and frustrating, but it can be done. You just have to retrain your muscles, just as if you'd been bedridden for a long time.


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## RH789 (Jul 30, 2012)

StormFinch said:


> That discussion was held in one of your other threads. My mistake so I'll answer your question.
> 
> I was informally diagnosed with it, as in I didn't have the electromyography, but since I had all the signs and symptoms... I had it about a year before my thyroidectomy and 10 months after surgery I'm still dealing with it. It's gotten better, but it's slow going.
> 
> The key to "getting off the couch" is to get off the couch. If you haven't already, start small with gentle stretching exercises like yoga for at least six months. Then add weight bearing exercises, but only at the lowest amount of weight and reps. I currently use 3 lb weights for arms, back, etc. and walk for legs. If I use any gym machines it's the ones that you can do with bar only, no weights pinned. It's a long process, and frustrating, but it can be done. You just have to retrain your muscles, just as if you'd been bedridden for a long time.


Thank you! I appreciate the personal story.

(1) May I ask how "bad" you were? I was so bad I was in a wheelchair at the grocery store, zoo, mall, etc. I used to run and exercise 1-2 hours a day, so this is killing me to be so weak.

(2) If you just had to throw out a random guess, how soon would you be able to go for a run, for example?

Glad you are better, optimistic, and see a light at the end of the tunnel! Gives me hope.

(I went to the neuromuscular doctor Tuesday and he said I seemed very motivated so he did not give me physical therapy. He also said I was very strong. I am pushing myself constantly, with the thought in the back of my mind that it is helping me get closer with every exertion.)


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## StormFinch (Nov 16, 2012)

RH789 said:


> Thank you! I appreciate the personal story.
> 
> (1) May I ask how "bad" you were? I was so bad I was in a wheelchair at the grocery store, zoo, mall, etc. I used to run and exercise 1-2 hours a day, so this is killing me to be so weak.


I didn't go anywhere, and if I did there had to be a seat close by. The hubby did the grocery shopping and cooked, or we did convenience foods. I would push to stand for a shower since I hate baths, but that wiped me out for the rest of the day. I guess that's the long way of saying, I'm really not sure, but bad.



> (2) If you just had to throw out a random guess, how soon would you be able to go for a run, for example?


Depends on for how long. lol I could probably run a block if I pushed it, but that would be it. It's also going to be dependent on the person. I never enjoyed running so I don't have much of a handle on it. If you miss running and feel like you can do a block, run a block and walk back. When that becomes less taxing run back from that block. Push a little, but don't overdo it.



> Glad you are better, optimistic, and see a light at the end of the tunnel! Gives me hope.
> 
> (I went to the neuromuscular doctor Tuesday and he said I seemed very motivated so he did not give me physical therapy. He also said I was very strong. I am pushing myself constantly, with the thought in the back of my mind that it is helping me get closer with every exertion.)


Push as long as your muscles don't shake. There's two states a weak muscle can be in during exercise, vibration and an all out shake. The vibration is fine, the shake isn't.

Good luck!


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## RH789 (Jul 30, 2012)

Thank you, StormFinch!

I will keep pushing this muscle recovery as much as I can.

It's so frustrating when I don't get much of an answer from the endocrinologists I've seen, but one told me it would take about 12 months. Plus, the neuromuscular neurologist thinks I will be running in 3-4 months. Is he crazy? I can barely get off the couch for any extended amount of time.

Wow, so you seem like you had too much thyroid hormone in your body for about a year, but I had it for 2.5 years and you are still recovering. What must that mean for me, I wonder?

I know of another woman in the UK who said she hasn't worked full-time for 17 months and she still uses a walking stick. She said her Graves was very severe. I don't need a walking stick, but I am still not very mobile.


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## RH789 (Jul 30, 2012)

StormFinch said:


> I didn't go anywhere, and if I did there had to be a seat close by. The hubby did the grocery shopping and cooked, or we did convenience foods. I would push to stand for a shower since I hate baths, but that wiped me out for the rest of the day. I guess that's the long way of saying, I'm really not sure, but bad.
> 
> Depends on for how long. lol I could probably run a block if I pushed it, but that would be it. It's also going to be dependent on the person. I never enjoyed running so I don't have much of a handle on it. If you miss running and feel like you can do a block, run a block and walk back. When that becomes less taxing run back from that block. Push a little, but don't overdo it.
> 
> ...


StormFinch,

Just checking in! How are you doing now?

Still seeing improvement in muscle strength and physical ability?

Best regards


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