[karengibson5074]

#1060249

Has anyone else had this? If so, how long did it take to feel 100 percent normal again in terms of muscle strength?

Thanks!

[gatorgirly]

#1181506

Hi Karen,

Were you diagnosed with this? I looked it up because I admittedly am not familiar with the term despite being quite sick when I was first diagnosed with Graves’. It appears to be an actual condition according to the National Institutes of Health (http://www.ninds.nih.gov/disorders/thyrotoxic_myopathy/thyrotoxic_myopathy.htm). What I experienced was called muscular atrophy, or muscle wasting. Basically the more you work out when you have uncontrolled hyperthyroidism, the more muscle you are burning as opposed to fat. I lost a ton of weight but lost all my muscle mass, tone and strength and became skinny but flabby. I only noticed an improvement after several months on ATDs. As the page above indicates, and as was true with muscular atrophy, treating/managing hyperthyroidism was the only way to reverse/improve the condition. Hopefully you will experience relief after selecting your treatment course.

Kelly

[karengibson5074]

#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.

[gatorgirly]

#1181508

Well I’m so sorry to hear that. I didn’t have anything that severe, and definitely was not diagnosed with thyrotoxic myopathy. I was on ATDs for a full year but could not achieve remission, so we opted for RAI. It was another six months before I finally went hypothyroid, and another 18 months before I finally became stable on Synthroid (I was constantly fluctuating between hyper and hypo for that period, on varying doses).

1. So I guess it was 18 months of constant hyperthyroidism.
2. Three years, but I was considered to be one of the most severely hyperthyroid and thus most complicated patients my endocrinologist had seen.

I DO feel 100% now. I feel best when my TSH is closer to hyper than hypo, so we try to keep it around 1.0-2.0 (my lab’s normal range is 0.28-4.10).

What is your doctor’s plan for the myopathy? It is just assumed that as you level out, this condition will be reversed?

I know personally I am not even close to the physical shape I was in before Graves’ and it is much, much harder to work out now than it used to be. I work out very hard every day (Insanity, P90X, etc.) and yet have almost no muscle to speak of. I am considering a T3/T4 combination if this doesn’t change in the next few months of a consistent exercise routine. As a former competitive cheerleader, the strength/endurance effects of Graves’ have been even more difficult than the physical ones (TED, predisone-related weight gain and acne) for me to accept.

Hope you are on the path to getting back to normal!

[karengibson5074]

#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.

[npatterson]

#1181510

Dear Karen,

While I have heard of thyrotoxic myopathy, I am not that familiar with it, other than some mild wasting in my lower legs. It has been so long ago that I no longer remember it.

Are you seeing a thyroid specialist? I assume you are checking out reputable websites like Mayo Clinic, American Thyroid Association, Endocrine Society, AACE, Web MD, etc. They usually don’t go into nearly as much detail as someone who has been there, but the information will be accurate.

Take care,

Nancy

[karengibson5074]

#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.

[Jake_George]

#1181512

Nancy asked me to pop in and give a reply.

I had a real problem with this when hyper and after treatment. I think she asked me to stop in because I had three cases transient paralyses due to my levels being off and a lot of STRESS. I had muscle wasting and kept pushing myself and just plain wore myself down to the point that my muscles just shut down for a brief period. One case I happened to be on the highway crossing a bridge at 55 miles an hour.

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.

But over 20 years later, my hyper and hypo hell is a distant memory. I have been well for over 16 years. I just retired and now have time to write more and do things I want to do. I have Graves’ and life is good, no life is fantastic. When I was first diagnosed I never thought I would be where I am today and how good I feel.

Give it time, rest when you need to and made sure your doctor listens to how you FEEL not just your labs. As always we are only a click away.

Jake George
Co-Author, Graves’ Disease In Our Own Words.

[gatorgirly]

#1181513

I think I misspoke, or you misunderstood. Either way, it took three years for me to achieve euthyroid (normal thyroid levels). And yes, during those three years I mostly felt lousy all the time. I developed ulcers and severe GERD. I went through several months of gastroparesis (even though I was never a diabetic) and lactose intolerance – both resolved themselves but my team of specialists blame Graves’. I also was on prednisone for TED for so long that I gained a ton of weight, had the worst acne of my life, and now have stretch marks on my abdomen and a lingering “moon face.”

So yes, I felt like crap for three years. But as soon as my thyroid levels stabilized, I felt great and have felt great for more than a year now. I have been on the same dose of Synthroid (88mcg) for 6+ months.

To answer your questions…

(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? No. As a former athlete, I took it pretty hard emotionally but I was able to walk and do gentle yoga. I was prohibited from doing anything else due to the tachycardia and I was easily winded and weak, but I maintained a relatively active lifestyle and social life.

(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? I was 25 at diagnosis and am 29 now.

(3) How did this all affect your life? Were you able to work? I work part-time. I missed a week of work when I was first diagnosed, but only because I went into a thyroid storm and was hospitalized. I returned to working full time a week later. I work in PR, so full time means 50+ hours a week. I should’ve pulled back a bit but work kept me distracted from my health problems.

I agree with Jake – hyper and hypo hell are distance memories for me as well and it’s only been a year since I was there. Most days, I forget about Graves’. One day, you will too

[SallyB62]

#1181514

During my super-hyper stage and after thyroidectomy, my endo’s tested my muscle strength and told me I had diminished strength. Went from about 150 to 135 lb. But, they never officially did neuromuscular testing or explained the seriousness of diminished muscle strength; or, that increasing exercise might hurt / compromise my muscles further.

After being on same synthroid dose for about 1 year, I still have not recovered muscle strength. What do doctors generally recommend for this? Are there good ‘trigger’ questions I can ask to prompt them into action or good advice?

[karengibson5074]

#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]

#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?

[Kimberly]

#1181517

Hello – Hopefully, you will get some other responses here, but your doctor (and perhaps a physical therapist) would be the best resource in terms of giving you an idea of how hard to push.

Personally, my inclination as a patient would to take things *very* slowly, rather than trying to push right now. One of our former facilitators shared a story that she started weightlifting with paperback books, because that was all she could lift at the time!

[karengibson5074]

#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.

[Raspberry]

#1181519

I might have some experiences that could be helpful. I’m still bouncing from too low to too high in my thyroid levels (for me) though all these values are very much in the normal range. It seems that the sweet spot my values need to be at is very narrow indeed (like 0.1 too much or too little matters) and even once I reach it illness or stress can change the point. So still not having fun yet.

But I have some exercise experience that might help. When I’m a little too high (but not full hyper) I have more energy, feel like I must be active but there’s a feeling of weak caffeinated edginess to it. Exercise doesn’t build strength or stamina when I’m like that even though I feel driven to do it. When I’m a little too low, there’s not as much energy as I expect to have and even when I do exercise I get injured quite easily. Even contracting a muscle too hard (like pulling up the emergency brake very hard in my car) is enough to make my arm have odd muscle and joint pains. So basically until you get to the ideal thyroid level and stay there, even if you are a little off, there could be issues with building physical fitness. At this point I am about 80% as active as I was before I got sick, but I was a couch potato – I now walk about 30 minutes 5x’s a week without lingering pains afterward. I do still have some injury if I push a muscle unexpectedly hard though. I hope some of that helps.

Good luck!

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