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#1 July 27, 2020 20:07:27

Big_goit
Registered: 2020-07-11
Posts: 9
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Muscle spasms with Graves Disease

Hello everyone, I'm a 17 year old with Graves disease. I got diagnosed spring 2019 and a couple months into methimazole treatment, I started having severe muscle spasms. They aren't like normal spasms though, they are excruciating (they wake me up at night and keep me from being able to live life normally). I usually describe it as “seizing” because all the muscles in my arm or my leg will get rock hard and swell up giving me an incredibly uncomfortable dull throbbing/radiating pain that goes in waves up and down the muscle. It only happens in my arms and legs and can be a single muscle or multiple muscles. It is so painful and I have to stop what I'm doing when this happens (every day, often multiple times a day) because I can't focus on anything but the pain. It seems to be triggered by use but can be random. After I got treated for graves with surgery, they went away. After my thyroid grew back 6 months after surgery (lol) and I went back on methimazole, the muscle seizing started again intensely, briefly stopped for a few weeks, and now is back again affecting me every single day. Can anyone describe their experience with muscle pain or muscle related symptoms in relation to graves in case it is similar to what I experience? Could this be a side effect of methimazole? Can anyone think of things I could do to help them go away (the only thing I've found that helps is ibuprofen and heat)? Could this be another autoimmune disease? Any stories or advice is appreciated. Thanks!

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#2 July 29, 2020 14:18:05

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4184
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Muscle spasms with Graves Disease

Hello - Hopefully, others who have experienced this will chime in here. One thought would be to get levels checked if it's been a while, as both hyperthyroidism and hypothyroidism are potential causes of cramping. However, there are other potential causes as well, so definitely mention this to your primary care provider or your endocrinologist.


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 Aug. 1, 2020 16:12:13

Big_goit
Registered: 2020-07-11
Posts: 9
Profile  

Muscle spasms with Graves Disease

Hello, Kimberly. I've told both of the endocrinologists I see and neither of them seem to understand exactly what I mean as these don't feel or act like normal muscle spasms. They told me to take a multivitamin and stretch. I have been doing this for about a month and the spasms haven't improved at all. Since I kept reporting these symptoms, I got a full metabolic panel done a couple days ago and the only level I have heard back about so far is phosphorus and that was normal. So I'm still waiting to hear about the calcium, magnesium, and other levels that could potentially be affecting my muscles. I started on a high dose of magnesium and calcium supplements several days ago (after my blood draw) and have not gotten any relief. And since I'm in remission from Graves, I've been getting my thyroid levels checked every 2 weeks or so and they've been pretty normal though I'm gonna have them done again tomorrow (because I've had a recent dramatic increase in graves symptoms) so we'll see.

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#4 Aug. 12, 2020 18:41:47

Big_goit
Registered: 2020-07-11
Posts: 9
Profile  

Muscle spasms with Graves Disease

Since my thyroid levels are normal, my endo ruled out thyroid as the cause of my muscle aches. We considered the possibility it was parathyroid related for a while (because my vitamin D and PTH levels were low) but my calcium levels are normal so that was ruled out as well.

Since I am having a variety of symptoms (headache, stomach pain, nausea, joint pain, fatigue, general sick/weak feeling, etc.) and my thyroid levels are normal, we are starting to consider other diagnoses including POTS and Addisons Disease. I'm getting some blood tests done tomorrow so we'll see. I'm not excited to potentially go on another autoimmune diagnosis journey ugh.

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