[Kimberly]

#1181520

Hello – One other thought would be to go back to your general practitioner with a specific description of your symptoms…with six months of normal labs, it might be helpful to rule out whether there is another cause that requires separate treatment. Hoping you can get some relief soon!

[ChristinaDe]

#1181521

Muscle wasting is very real & very difficult. Difficult to live with, difficult to overcome. At first I wasn’t even sure I could overcome it since I’m 51 now & mine was super severe. But I have. Been a process tho.

My experience: After thyroidectomy last Feb, was so weak that I couldn’t even uncork a bottle of wine anymore. After a couple of yrs of wasting, my body was DONE. Got cleared for exercise once my heart rate went consistently back to normal (about 6 wks post-op) & really had my doubts. My labs were still hypo, and my calcium had only recently returned to normal…so had a LOT of muscle cramping/twitching/discomfort as well as joint & back pain. Also was fatigued & having trouble returning to my pre-diagnosis energy level. But I began w/ once a week workouts in Pilates w/ an experienced instructor anyway (after clearing it w/ my surgeon & endo).

At 1st, it was really hard. We had to modify many of the exercises. Dropping my head too long or too low caused dizziness, I experienced neck & lower back pain w/ moves that didn’t support them well enough, & had severe hip pain w/ certain movements. So we paid attention, made adjustments, but we kept going w/ all my drs support & encouragement. One day a wk, every wk. And it would take me 2 or 3 days to recover each time. Had muscle cramping a lot, & learned that I needed magnesium & potassium (somehow I had become low in these while ill & didn’t know it til I began working out). Few wks later, I didn’t need that recovery time, so began twice a wk. Few wks after that the dizziness wasn’t an issue so began to do what the rest of the class was doing & I no longer needed to supplement the magnesium & potassium. Couple of months after that was still having some trouble w/ neck, low back & hip pain tho despite an obvious increase in muscle mass & strength. They suggested medical massage & PT or chiro. I went w/ massage & chiro. The massage/chiro combo straightened out my posture & unkinked my muscles & now I’m doing advanced Pilates 3 times/wk plus yoga with no pain at all (10 months post-op, 8 months after starting back).

It’s absolutely a process, one that you have to work through gradually – & it’s so important to listen to your body each day. That was the hardest part for me. I have to say – I went back to exercise so soon because I didn’t like the weakness & didn’t like the loss of tone in my body – but even better than getting my muscle back was getting my mind, mood & outlook back. I attribute those things to exercise more than anything else I’ve done (although I know that even w/ exercise, if my labs weren’t normal I’m sure that my mental & emotional state would be subpar!). Helped me not to feel like that “sick patient”, to recover “me”.

Of course it goes without saying…stay in contact w/ your drs…be honest w/ them & let them know all you’re feeling…but if you’re getting their blessing, then exercise is SO helpful. Even if it’s like others have said…just beginning w/ walking or lifting your book! The beginning was tough, but it really did get better. Wasn’t immediate, but each month was so much better than the one prior. Did have a couple of hiccoughs along the way, but I addressed them as they came. I’m now stronger & in better shape than I was before I got sick.

Good luck & keep hanging in there!

[karengibson5074]

#1181522

Thank you, everyone!

Did anyone ever have weakness in their hands or fingers? Just curious.

I still have hand/finger weakness and I have had normal thyroid lab values for six months.

[Kimberly]

#1181523

Hello – Hopefully, you will get some other responses here, but I would definitely mention this specific issue to your doctor; there can potentially be other causes (like carpal tunnel) that could benefit from separate treatment.

[karengibson5074]

#1181524

I just received an e-mail response from one of the top endocrinologists in the country and an internationally-known authority on thyroid disorders.

I asked him how long was the longest, worst thyrotoxic myopathy case he’s ever heard about. His e-mail response to me was:

“Thyroid myopathy improves with improved thyroid function.
It may take several weeks to months to completely resolve.
In the meantime, limit physical stress.

Hope this helps.”

I am seven months into my thyrotoxic recovery, and I am only seeing minimal improvement. I am aware that I had excess thyroid hormone in my body for probably 18.5 months, so I am severely affected. I have been to over 30 doctors and I pass every single one of their various medical tests with flying colors.

Wikipedia says, “Depending on the severity of the TM progression symptoms may take up to a year to completely reverse the damage done by TM.”

Maybe there aren’t a lot of bad cases of TM out there, so none of these doctors know how bad we suffer? I just don’t know.

Do you think my recovery is too slow? Should I be concerned?

Thank you.

[Raspberry]

#1181525

Weakness in my hands and dropping things I was holding was one of the first “off” signs when I was in the hypothyroidism phase years before Graves took hold. During the hyperthyroid pre-diagnosis months I also unexpectedly dropped many things. I was very embarrassed and scared I was developing MS. I haven’t been able to open a jar in ages – always have to use the kitchen gadget for it.

Since your recovery seems stalled have you investigated working with your endo to adjust where you are inside of the normal range for your labs? I can have real hyper and hypo symptoms while still technically being in range and most others can too. Those ranges are just too broad, so anybody who just tells you your values are “normal” and calls it good can still do more fine tuning. I hope you get some relief soon.

[Ski]

#1181526

Excellent suggestion, Raspberry, and worth a shot, karengibson. It’s true that the normal range for thyroid hormone levels is wide, but our own individual perfect SPOT is extremely narrow, and finding it can be a challenge, but the effort is worth it. If you happen to have thyroid levels that were drawn PRIOR to your illness (perhaps an old physical exam), it could help you find the truly right spot for your body. It may take time to get there, but it’d be worth it, when you think about feeling truly well every day thereafter.

[karengibson5074]

#1181527

Raspberry – thank you! May I ask, how long did it take for you to regain your physical strength?

[Kimberly]

#1181528

Bumping to the top…

[Raspberry]

#1181529

Hi Karen, how’ve you been doing? I just realized you had a question for me I never replied to in this thread. I still need the gadget to open jars, that seems to be a permanent thing for me – not sure if it’s thyroid or I just need some kind of special grip strengthening exercise. The weakness from being hyper needed about two months at normal levels to begin to improve. I still have odd muscle and joint pains though as I’ve had trouble stabilizing on the “sweet spot”. The brief time I did manage to be at my ideal thyroid levels I did quickly gain strength and stamina, sadly it didn’t last. Still it’s proof to me that it is possible, so I keep at it one dosage adjustment at a time. Good luck to you!

[karengibson5074]

#1181530

That’s okay! I am 15 months into recovery at this point. I am doing a little bit better, but nowhere close to being able to work out 1-2 hours a day as I did in the past.

I felt like I started to feel a little stronger when I was at the 5 month mark, but it’s been slow ever since. It’s been so slow I wonder if I am just being an optimist about my improvements.

I know gatorgiry and Jake_George both said it took them about three years to recovery but as someone who is at 15 months and not noticing any impressive improvements, I worry a lot. Doctors have not offered much info in terms of expectations. If anything, they act like I should be much better by now (which then worries me even more that I am “behind” in my recovery).

I worry that if I have not had any great strides in recovery in 15 months, then there really isn’t much hope that the next 15 months are going to suddenly change and I am going to make amazing progress. It concerns me very much.

[Raspberry]

#1181531

Are you still on methimazole? I still am and I have to wonder whether I would have been better off getting a TT to start with as those folks seem to get more complete resolution of Graves effects. There seems to be a ceiling for how well I can be too though my struggles are more with general energy and focus/attention problems and I didn’t have the severe muscle reactions you did. It helps me to remember I can always get another opinion or when times change maybe a TT if things continue as they are for too long. So remember you’ve got options too!

[connypie]

#1181532

hi Karen, im 20 years post RAI, and still get symptoms.especially when im stressed out.have you considered a food allergy?If i eat white flour foods like cake and cupcakes,breads and grains,i get very sluggish,bad tempered and hurt and ache all over my body and get overall weakness and constipation.this will take a few days to clear out of my system and then i feel better.ive been tested for celiacs disease 3 times,all negative.i even have a hard time drinking beer,the sad part.im german.its almost embarrasing to have to admit that beer doesnt agree with me all the time.i grew up eating and drinking everything,so its not something ive had all my life.basically the more processed the food is ,the harder it is for me to digest.as im sitting here feeling sorry for myself because i couldnt leave the icecream alone and now i dont feel so hot.i found out by making a diet bet with my boss to lose weight for money.i started to eat this 400 calorie meal diet. and of course there isnt a lot of bread in it and i started feeling so much better that i eat similar to it now.im not a healthnut,but maybe it will help you. and my vitamin D level was less then half of what it should be,so now i take a calcium/vitamin d supplement.

[karengibson5074]

#1181533

Raspberry – Thank you! My thyroid levels are perfect now. The only problem is muscle recovery. Everything else is great, except for the lack of strength and stamina in my muscles.

conniepie – Thank you! I have experienced a food allergy before and know what to watch out for (broke out in hives). This is strictly a muscle issue I am experiencing. I have also had all vitamins and minerals checked and I am well within the ranges.

I wonder about those who mentioned they had a three year recovery. Did they feel a gradually increased feeling of “things are getting better” or did they go a year or two of feeling awful and then the progress all caught up at the end and became noticeable?

I am not making that much progress at 15 months. I just feel like I am always stuck within a certain range of physical activity and I never progress beyond this tight range of my physical abilities. I never get worse (for which I am thankful), but never really get that much better either.

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