[karengibson5074]

in reply to: Thyrotoxic Myopathy #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.

[karengibson5074]

in reply to: Thyrotoxic Myopathy #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.

[karengibson5074]

in reply to: Joint/Muscle Pain – How common? #1175023

Hello, all..

I know this post a a bit old, but was just looking through all the posts and searched for thyrotoxic myopathy and this came up. I was diagnosed with this 04/2013.

WWWI2 (and anyone else with thyrotoxic myopathy):

(1) How are you doing now?

(2) Are you feeling 100 percent better, muscle-wise?

(3) How long did it take to regain muscle strength?

I hope you are doing better by this time. Good luck to all.

[karengibson5074]

in reply to: Hi all, back in touch #1182188

I am recovering from thyrotoxic myopathy (TM)! What have you learned? The recovery process is slower than I would prefer.

[karengibson5074]

in reply to: Thyrotoxic Myopathy #1181527

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

[karengibson5074]

in reply to: Thyrotoxic Myopathy #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.

[karengibson5074]

in reply to: Thyrotoxic Myopathy #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.

[karengibson5074]

in reply to: Thyrotoxic Myopathy #1181518

Thank you, Kimberly!

I have seen many doctors and they seem to think I should be better by now. One of my doctors told me I could be running in February, but that seems impossible.

I am at my six month mark this week, of having normal thyroid lab values, and if I am honest I only feel five percent better. I am so worried that this is going to be as good as it gets and I will not improve further. I would think there would be more than a five percent improvement within the first six months of recovery.

[karengibson5074]

in reply to: Thyrotoxic Myopathy #1181516

Jake_George wrote:

Listen to your body. If you need rest take it. if you think you are too tired get back to the doctor. In my case I was in the low normal range and needed more synthroid. It just wore me out. Once my levels went up my muscle mass came back and I had no issues.

I too took almost three years to get back to normal after RAI. It may scare you to know it can take some time but know that we did not get sick overnight. We do not get better overnight.

Thank you so much for all the helpful info. I am sorry I did not reply sooner. For three weeks I really was aggressive about my walking routine and was walking up to three hours a day. I naively thought if I waked more, I would heal faster. What that did, was just broke my body down even more and now I have injuries (plantar fascitis in both heel of my feet, runner’s knee, re-injured sprained ankle, blisters).

Next week will be six months since I achieved “normal” thyroid labs.

(1) Is it normal that I am still pretty much on the couch all day? I feel like my “recovery” is a bit slow.

(2) You said once your levels went up, that you were able to build muscle again. May I ask, in what time frame did the muscle building take place? I still feel weak even if I lift my laptop. The laptop feels heavier than it should. I just wonder when that symptom will improve.

(3) Three years from RAI to 100 percent normal? That is the longest I’ve heard. Oh goodness. My life is on hold. I need to get married, have children, etc. The clock is ticking. I am so confused because the director of neuromuscular told me I could be running by February 2014, but that seems highly unlikely.

(4) Is rest the best thing, or do we need to really “push”ourselves to help us build the muscle back? I met with a physical medicine doctor in October. She told me that when body builders are building their muscles they break down the muscles and then build them back stronger. And, then she said that I have already broken mine down so I just need to build them back up again. So, I take it to mean that my muscles will not build in strength until I exercise the and force them to build up. I guess sitting on the couch isn’t going to help that?

[karengibson5074]

in reply to: Thyrotoxic Myopathy #1181515

Sorry for not replying sooner, all. I’ve been run down and had some injuries from my increased walking.

SallyB62 – my doctors haven’t been especially helpful. The one thing I had recommended to me, and I think it was good advice was to slowly increase walking. Not too much, as I have learned, or you might have some injuries.

Are you really no better than a year ago? You are still weak? Zero improvement?

What percent of normal, do you feel like you are currently at right now?

[karengibson5074]

in reply to: Thyrotoxic Myopathy #1181511

Nancy,

I have seen so many doctors over the past three years it makes me sick to think about it. I have actually been to Cleveland Clinic (highly recommend).

The problem is, the endocrinologists do not seem to know much about how long I will suffer. That is why I have sought out neuromuscular neurologists. And, to be honest, I have had varying answers on how long it will take from those neurologists.

Wikipedia said a thyrotoxic myopathy could take up to 12 months AFTER achieving normal thyroid values. In all my research and all my appointments, I believe that is the most realistic time frame. I had a severe case, as well. It would not surprise me if it took me 18 months to feel better. I am five months with normal thyroid labs, and I still have muscle issues.

[karengibson5074]

in reply to: Thyrotoxic Myopathy #1181509

Thank you!

Around the 3 month mark of normal thyroid labs I started to feel a little better, so I started doing arm exercises with my biceps and used my five lb hand weights. Bad idea. Was sore for 3 days after, because of five minutes of exercise.

Well, went to another neuromuscular doctor and he had a great suggestion: build my stamina, skip the weights. Neuromuscular told me to do 20 minutes of walking everyday, for a week, and then increase five minutes each week.

Inspired (and frustrated), I have worked up to 60 minutes now. It’s been very hard to walk with melted muscles due to the wasting, but I am better for having walked.

He told me I could be running in 3-4 months. I think he is wrong, but we’ll see. I have been eating well, taking exceptionally good care of myself, etc. but there’s only so much I can do. I look forward to my walks now, because it makes me feel like less of a victim of this horrific situation. It makes me feel like I am contributing to my recovery, which is a great feeling.

PLEASE CLARIFY! Oh my goodness, oh my goodness… did you just say it took you THREE years to feel 100% again after achieving normal thyroid labs? Oh, no. That scares me.

I had a severe case of muscle wasting. I had very stiff muscles. You could see that in my biceps, which I was told was the worst area of my body, you can see ridges on my arms where the muscle wasting is the worst. I am terrified I will take forever to get my life back. Oh my goodness.

I had an extreme reaction/situation for my muscles as well. I had excess thyroid hormone in my system for 18.5 months. Now, I am terrified it will take me three years to get better.

(1) How “bad” were you? Did you need a wheelchair at the grocery store like I did? Were you basically laid up on the couch most of the time because your muscles were too exhausted to do anything else?

(2) May I ask, which age range are you? I am 31. Hopefully since I am on the younger side, I could recover faster than someone in their fifties perhaps?

(3) How did this all affect your life? Were you able to work? I work part-time.

[karengibson5074]

in reply to: Thyrotoxic Myopathy #1181507

Yes, I received an official diagnosis. I had an EMG performed by the director of neuromuscular (neurologist) and there was a myopathy in my muscles.

I was in a wheelchair pretty much, or on the couch. I was certainly not able to work out when I had excess thyroid hormone in my body.

I have had normal thyroid labs for five months now, but I have severe muscle wasting and wonder how long I am going to have to deal with it.

May I ask:

(1) how long do you think (a guess would be fine) you had excess thyroid hormone in your body?

Also,

(2) how many months (a guess would be fine) did it take to feel 100 percent again? You do feel 100% again, right?

Thank you! Best wishes.

[Author]

Posts