Request for thyrotoxic myopathy wisdom

[Ethannyc1]

Hi all, I was recently diagnosed with graves disease and I am fairly certain I have TM as well. After doing hours of research, I am not expecting to get much help from my doctor unless I see a specialist (which id greatly appreciate if anybody has one in NYC they’d recommend).

I am experiencing rather severe muscle pain in my legs. Cardiovascularly I am now a shell of what I was 2 months ago... and I’d say the same about muscle mass. I feel like I’ve aged 50 years in 2 months.

What can I do?

I’m on betablockers and 10mg/day (at once) of methimazole.

But aside from that, what can I do? Specifically:

Diet? (Things I should avoid (gluten?) and add (protein?)

Supplements? (Bee pollen?, B12? Etc?)

Muscles? (Stretch? Try to work out? Rest?)

I can find answers to these questions anywhere.

Please no links. I feel like I follow them and they get close but lead me down irrelevant rabbit holes.

Thanks so much I’m advance!

Ethan

[Ethannyc1]

And for pain management?

Advil? CBD?? Marijuana??

[Ethannyc1]

Thanks for nuthin, members! Other posts get 30 replies in a day or 2 and I get }^%*}% zero! Wtf did I do wrong? Hate ny’ers much?! Maybe it’s the irritability of my graves talking, but you all suck ass.

Thanks. For. Nothing.

[helvella Administrator Thyroid UK in reply to Ethannyc1]

Thanks for nuthin, members! Other posts get 30 replies in a day or 2 and I get }^%*}% zero! Wtf did I do wrong? Hate ny’ers much?! Maybe it’s the irritability of my graves talking, but you all suck ass.

Thanks. For. Nothing.

I have just spent a considerable amount of effort making sure that older unanswered posts have received replies.

There were many reasons for them remaining unanswered. In a forum with the rate of posting we have, it is inevitable that some will simply be missed by those who might have the experience to answer.

I don't think your latest addition to your thread will encourage helpful responses.

[Greekchick]

Dear Ethannyc1,

As a born and bred New Yorker now living in Canada for many years, I will attribute your outburst to Graves anger, as did helvella, and also to just being outspoken as we New Yorkers tend to be, and see if I can help you without any links. I have Graves as well and just had a thyroidectomy 12 weeks ago for that.

You may or may not be aware that beta blockers can cause muscle weakness and this can be severe in some people (this is spelled out in the patient inserts for all beta blockers and these are available online).

You do not say what dose or which beta blocker you are on. For the level of weakness you describe,

my guess is you are either on a relatively large dose of whatever BB you have been prescribed, or you have a sensitivity to that particular BB and thus the muscle weakness side effects you are experiencing.

Are you on statins as well? The combo of both BBs and statins would wreak havoc with your heart and other muscles. If not, disregard that thought.

Some beta blockers are more potent than others and have stronger side effects with respect to muscle weakness. You may wish to ask your MD about this - he/she may be able to give you a different BB or put you on a lower dose of whatever you are on. Not all BBs are equal and you may respond differently to one versus another. It would be worth a try.

Alternatively, you may wish to talk to your doctor about weaning off BBs for the next little while to see if your muscle strength comes back. DO NOT DO THIS WITHOUT MEDICAL SUPERVISION - IT IS DANGEROUS TO DO SO. If your muscle strength comes back, you will know that it is the BB causing the problem and you will need to look at other ways to manage the palpitations from Graves. When I was on Tapazole, the palpitations went away on their own without a BB. You don’t say how long you have been on Tapazole. You would need to give it some time to see the effects on your heart. It took me about 4-6 weeks before my palpitations and other Graves effects subsided. I was on Tapazole for 2 years prior to my recent TT.

I do not know if your muscle weakness is caused by Graves or by medication - you need medical advice to assess it. I am not an MD.

I urge you to run, not walk, to an endocrinologist. Get a referral from your GP - or if you are on a managed care program through your employer or the ACA, get a list of the specialists they cover in the NY area. I personally do not know any.

I can tell you are suffering and I feel for you. You need a specialist to evaluate you ASAP before you experience any more loss of muscle mass. They may have insight into the muscle weakness if it is not drug related. With respect to your other questions, I don’t have answers for those or any experience with the remedies you list.

I wish you all the best and am truly sorry for what you are experiencing. Graves is rough enough as it is. I hope you feel better soon.

[ling]

Hi ethan, how are you doing?

Is your Graves under better control so there's improvement to your leg pain?

Wishing you well ...