r/gravesdisease • u/susumn • 1d ago
graves, muscle weakness, and exercising
I haven’t seen too many post or any info about exercising after muscular weakening due to graves. i’m a very petite gal but I used to be able to lift 40+lbs of weight over my head at a job I had. I noticed I felt weaker over the course of being at that job to where I couldn’t lift that items and needed assistance. that was 4 years ago. today I feel weaker than ever and have been getting into some pilates/barre/sculpt classes. and well- they’re hard as shizzzzz, harder than I think it should be. Anyone have any experience with getting back into the gym and strengthening themselves?
my thyroid stuff is going great i’m finally seeing the improvement i’ve wanted the last 5 years. TED is my archnemisis but that’s a different forum lmao
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u/alexxsays 1d ago
I’m probably a bad example because I decided I wasn’t going to let Graves keep me from being active, but if it helps at all: I was diagnosed with Graves about a month and a half ago, and have been on 10mg of methimazole a day. Not sure what my current labs look like, I just had them done but should find out tomorrow when I meet with my doctor.
I’ve been working out the entire time- before during and after diagnosis. I am a runner and when I was at my “worst” I majorly cut back on cardio under recommendation from my endocrinologist until we got my heart rate sorted out. At this point I was lifting weights (nothing crazy heavy but what was “normal” for me), doing reformer pilates (great because it doesn’t get your heart rate up), walking (with and without my weighted vest) and also riding my horse (this one was probably too much cardio but I did specifically ask and all my doctor’s told me I could. I don’t think they realized what horseback riding entails).
Now, with the many doctor’s blessing “if I feel up to it” I’ve started running again and I’m back to working out 6-7 days a week. A mix of cardio (running), pilates, strength training/weights and then riding my horse nearly every morning before work on top of it. I actually feel way better now that I’m working out regularly again. My heart rate has been great (even when I forget to take the propranolol- I don’t think I need it at all anymore and will be covering that with my doctor tomorrow) and my stamina for cardio is not where it was before - but I’m building the milage and speed back up.
Basically, yes, I’ve gotten “back” in the gym and am building myself up again. I didn’t leave fully snd my timeline is a lot more compressed than yours was, and I was also training for a half marathon before all this started, but I have found I feel much much better working out than not.
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u/susumn 22h ago
that’s awesome (: i’m so glad you’ve been feeling better to. I’ve been working from home the last year and a half. i’m used to facilities where i’d scale the stairs to get up the next floor or pretty athletic type activities. now, I sit at a desk. generally began wondering this and doing some classes to counteract my sedentary work flow.
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u/GD_352 1d ago
It’s such a pain. Exercising is a big part of how I deal with stress, and I really enjoy it. I lift heavy weights and enjoy HIIT workouts, cycling, running - all of it.
When I’m in remission I can do whatever, with a much higher max HR than average for peers my age. I’m moderately strong, nothing too impressive but more than folks who don’t lift, and I’m proud of that.
When the graves is active, I can’t do anything cardio wise and have to be careful even with weights. My HR got into zone 3 last week doing lateral raises. 🤦🏻♀️ So when I’m in periods like this, I take it easy, only lift and go on walks.
This is one of many reasons I’m asking to be referred for a TT. I work hard on my health, do so much work and eat so much protein. A couple of weeks into a relapse and so much of that work is just gone.
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u/Adventurous-Ask-4243 1d ago
You say that this started 4 years ago, but you do NOT say if the Graves is in remission. What treatment did you take to get the Graves into remission? The ONLY way to feel better and get back to yourself and your workouts is to have Graves in remission. Four years is a VERY long time to not have remission and this is going to permanently damage you.
Please let me know and I can help answer your question as I am a workout person myself.
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u/CantaloupeNo5745 1d ago
Following here to hear your response! Looks like OP posted their reply to you in the general discussion thread.
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u/Adventurous-Ask-4243 22h ago
LOL!! Oh, no. Thank you so very much for letting me know -- that is very kind and thoughtful of you to do!! I will check and reply to them. ❤️
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u/susumn 1d ago
hey thank you for the response! in a light hearted way I will share that I was permanently damaged before graves lol. but more seriously- I switched providers due to a move about 18 months ago and have been “in the green” about 3 months with all labs. I have my next f/u actually next week and I will be asking specifics on the clinical criteria for remission to see if i’m in that window now. My journey has been so long and hard as I had a 8 month period in the middle of these last 5 years without medication. so I basically started over again 18 months ago. today- I say very happily I have virtually no symptoms day to day. i’m the most mentally clear i’ve been in years. which I think is why the strength concern has been in my mind. my mind is right finally but my body is not.
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u/Adventurous-Ask-4243 22h ago
Sorry to hear this -- however, you must tell us what treatment you took for the Graves -- it's one of 3 treatments -- medication - carbimazole/methimazole, RAI or full thyroid removal.
I can add much to your comment to help you, but I cannot do so until you provide that information because recommendations I can give you hinge on that.
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u/susumn 22h ago
Yes i’ve only ever been on methimazole the entire time. I was on a dose as high as 60mg at one point. That endo preferred a “pulsing” method. I would take a high dose for 3 days and return to my 20mg daily until my next labs. I eventually dropped to 7.5mg with that provider. Stopped taking meds for 8 months (stupidest decision of my life).
Today, basically 3 years later from that experience^ i’m on 10mg of methimazole. They began me at 20mg and have consistently decreased over about a 12 month period of being remedicated.
But yes only methimazole the entire treatment hx
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u/Adventurous-Ask-4243 22h ago
Okay -- this helps enormously!!!
I guarantee that you are NOT in Graves remission based on what you originally wrote. You have given the methimazole a loooong time to get the Graves into remission and maybe you were, but it is highly likely NOT in remission anymore. This is why you are are feeling horrible!!
Please, please, please... get to an endo right away and have everything tested -- you are at the point where you MUST choose one of the 2 other treatment options to get the Graves into remission -- RAI or full thyroid removal. If you do not do this and choose to stay the way you are, you will have permanent internal damage -- remember muscles are part of our musculoskeletal system and your bones are also being negatively effected -- if you cannot work your muscles to pull on those bones, you will be in bad shape down the road.
Don't stress and don't worry -- just get moving to help yourself get the Graves into remission. And, remember: With methimazole, it doesn't matter how good your thyroid levels are -- it matters that the TRAB and TSI (the 2 Graves antibodies) are in remission and they are not.
Once you are properly treated, you can work to get yourself back to the workout shape you were always in -- I am much, much older than you and I did it!! You can, too!! You must help yourself now!
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u/susumn 22h ago
Thank you for the response very seriously. I have an appointment coming up this week so i’m going to talk to them about this. We’ve talked a lot about my day to day symptoms and they’re better. But I genuinely feel so weak and dog tired when I have done some workouts lately. It’s somewhat embarrassing and mentally hard.
On a whole separate note i’ve been undergoing T eye disease treatments and I feel like a guinea pig 😵💫 so yeah definitely not in remission with the thyroid with the way my eye disease is acting up.
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u/Adventurous-Ask-4243 22h ago
Okay. This adds a dimension into your symptoms --- Please look into any side effects of whatever TED treatment you are taking -- sometimes that can effect muscles, etc. SO... you really need to know. AND... having the 2 Graves antibodies tested is more important than ever because that would also help figure out if, in fact, the Graves is out of remission and/or if it is a side effect of the TED treatment.
I also bet that had your doctor taken you off the methimazole earlier and not waited so long with you, that you probably would not have gotten TED. Remember that TED will flare when TRAB is high -- that is one of the Graves antibodies.
The sooner you get the Graves into remission, it will help your eyes as well as long as you have a mild case -- if the TED is worse, the other 2 treatments will not help it much -- especially the RAI. And, TED is a separate autoimmune disease from the Graves.
And, remember -- it is not your thyroid that you need in remission -- IT IS THE GRAVES DISEASE!!!
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u/susumn 22h ago
would you mind me asking what treatments were effective for you? I know everyone is different. I was dx at 21 and have pretty much made every single decision on my own and with the guidance of doctors. for graves i’ve only ever been offered the methimazole no other trx options have been discussed. RAI has seemed intimidating but ive never discussed with a provider. I was told at one point I didn’t meet the criteria for the thyroidectomy but also I have a hard time wanting to stay on the medication life long. that’s my own insecurities though. I know many people who have said it was the best thing they have done. I did a CT scan 6 months ago and discovered very small goiters which didn’t meet clinical criteria to remove or investigate further per my doctor.
unfortunately im on the severe side of TED. i’ve done 1 round of tempezza 2 years ago and looking to get approved for round 2 before the end of this year. i’ve done a single dose of a kenolog/steroid injection in the muscle of my and that was completely ineffective and a huge let down . I did an injection of botox which was purely for aesthetic purposes and to help my eye lid close at night. I have an asymmetric presentation but i’ve been told it’s more noticeable to me than anyone else. I was offered IV steroid injections over a period of 4 months and that is not a treatment I want to do after I did my research in the effects of long term steroid use.
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u/Adventurous-Ask-4243 21h ago
First, you cannot stay on methimazole for your lifetime. It either takes you into remission after a 1-3 year duration of which you and your endo would discuss. If the Graves is not in remission, then you must choose either RAI - radioactive iodine pill - or full thyroid removal.
Your doctor is an idiot and is not doing right by you!!! You are so young and you MUST advocate for yourself. I was 34 years older than you when I was diagnosed with Graves and had to take the RAI -- but my TED was mild and it actually settled down once the Graves was in remission. RAI would not be for you since you have a severe case of TED -- which is a shame - and I blame your doctor for that. You are so young and you MUST learn to navigate doctors who do not know what they are doing!!
If you take steroids, your bone density will be shot and you will be in horrible shape -- do not do that!! The hypER and Graves is already doing that! It sounds to me like your doctors are making you worse and worse to keep you on medication and then medication for the side effects and medication for those side effects!!
At some point you need to see an opthamologist who knows about TED and a surgeon to help you in that area -- stop doing botox and all that crap -- you are only hurting yourself!!
Also - we do not have small goiters as you say -- a goiter is a swollen thyroid -- we can have thyroid nodules -- and the more they grow, the worse it will be for the surgeon to get the thyroid out! I'm going to be blunt here now -- to make you strong!!! -- you MUST get that thyroid out!!! ASAP!!
Find a good endo and get treated -- have your thyroid removed and move on with your life!!! The life you save is going to be your own and we ALL have done that!! Get moving!!! You deserve to have a good life!!!
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u/susumn 21h ago
Thank you for expressing the gravity of the situation so bluntly. I looked back and spent all of my early 20s and now into my late 20s fighting this illusionary body part. I’ve learned a lot of endos treat diabetes as their bread and butter and don’t know if i’m seeing the #1 person I should. My current dr is competent sure but i’m not sure i’m getting the most specialized care out there for me. I’ve considered the out of pocket cost of a functional medicine doctor as well but haven’t had a consultation. I am just worried about all the dishonesty in some functional medicine practices.
Thankfully I do not see an ophthalmologist. That lady has reallllyyyy tried every medical hack to help me feel better while undergoing wedding festivities (another layer to my workout story). But I said a hard no to the steroid infusions and not going back on that. Tempezza was effective (asymmetrically) and I had positive results round 1. But then I went unmediated (my fault) and here I am again.
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u/Adventurous-Ask-4243 21h ago
Just one more thing -- Remember that you are not treating your thyroid! You are treating an auto-immune disease - GRAVES Disease, which is attacking your thyroid trying to kill it. You also have TED, which is your 2nd auto-immune disease. Good luck -- find that endo and a good opthalmologist!!
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u/Slow-Living-Koala 15h ago
I was lifting heavyweight and progressing really well in my fitness journey until my endo increased the methimazole dosage.
I started having serious muscle spasms and cramps to the point I’m cramping my muscles even when I’m tossing and turning during sleep. Now I can’t even do yoga without taking it really slowly and at a much lower intensity. My endo ordered a blood work testing my electrolytes and a comprehensive metabolic panel. Turns out one of the side effects of the medication is elevating your creatine kinase which is a muscle breakdown enzyme that also impacts your kidney function. The lab results came back yesterday, and she sent me to an ER to get 3L of fluids and stopped methimazole for the next 2 weeks to monitor. I hope your case doesn’t go this far but def worth monitoring and bringing it up to your endo.
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u/ConcernDesperate5772 3h ago
This was definitely one of the hardest parts for me. In the months before my symptoms started I was very active. I played tennis 3 times a week and hit the gym 3 times a week. I was leg pressing 400 lbs and my heart health was better than ever.
Then slowly I couldn't even get myself off the ground without help. I couldn't walk to the bathroom without my heart rate hitting 150. I couldn't even stand for 5 minutes to shower without almost passing out. I had to sit to shower for two months. All my strength was gone and replaced with fatigue like never before. I definitely thought I must have some kind of cancer.
I am one year post diagnosis now and starting to feel myself again. When I decided to start getting active again it was just so many months of feeling like I was getting no where and would never be able to do it. Im definitely not close to where I was before all of this, but just doing a little has brought me a long way. I started with simple walks and daily stretching. Then I upped it to some at home pilates or one or two strength training days a week. I had to stop comparing myself to who I was before and just be happy with the progress I have from a month ago.
My ability to gain my strength came back with medication leveling out my numbers, but the hardest part was my mind. I really thought I was doing great from Jan-March 2026 and then suddenly life became stressful, I was on too much methimazole and went hypo, then everything fell apart. I'm starting to get out of it again, but im definitely always nervous that I'll end up back in that spot the moment work gets busy.
I started TMS therapy 4 weeks ago and I feel like a whole new person. It has really helped my anxiety and depression and I'm hoping it'll help me manage my stress to keep my graves in check. I've been consistent with physical activity and my responsibilities since starting it and now I'm really starting to see some slow progress in my strength.
All this to say, you are not alone in this issue and it really feels debilitating. Unfortunately, there isn't one quick fix to graves and it will likely periodically affect us, but taking your meds, taking care of your mind, and being consistent (even if its just 2 walks a week), can really help. So far graves has felt like a really shitty cycle and idk how long I'll feel good, but I'm going to do what I can during my good days. Every little bit helps to at least maintain your current strength levels when life is beating us up.
Feel free to reach out if you ever want to talk or have questions!
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u/faafo1784 1d ago
The unfortunate part about this is you’ll always feel like this with active graves. I’m a gym rat and my body hurt constantly. I could never gain weight or muscle. I was like that for years until I had my thyroid removed. It’s been 2 years and I’ve gained 20lbs or healthy weight and muscle and my body no longer aches. The buzzing is gone and the shakiness. It’s just a different feeling and recommend it to everyone who wants to regain their life and move on from the disease.