[Big_goit]

in reply to: Muscle spasms with Graves Disease #1185809

In response to yorkv01:

Glad to know I’m not the only one who is experiencing this. I will look into Armour Thyroid more, thanks. I hope to start working on my diet soon and cleaning it up (in hopes that it will help many of the things I have) so thanks, that’s good advice. I have to imagine this is thyroid or autoimmune related because I never experienced it until my thyroid starting acting up, it disappeared after surgery, and then started back up once my thyroid grew back, but based on my levels being normal (with mmi) every time we checked, they ruled out thyroid as the cause. I know it is definitely related but they keep telling me it’s not since my levels are normal. But now that I’ve had a full dose of RAI (assuming it worked), why would I still be having the muscle spasms. I am still searching for answers or for doctors who have some experience with this because most of the ones I’ve been to completely dismiss it as thyroid related.

[Big_goit]

in reply to: Muscle spasms with Graves Disease #1185808

In response to LaquintaLynsey:

Wow that is severe! I relate to everything you say so much! I have recently had another increase in the occurance of these severe spasms (i have no clue why) and it’s, again, gotten to the point where it happens every day multiple times, especially at night. They all seem to vary in strengh, pain, location, length of time they last and I can’t figure out any reason why they would change. The worst ones will immobilize me, like you said, and I can’t do anything but think about how bad the pain is. Again, similar to you, doctors considered parathyroid (but ruled it out), and loaded me up on calcium and magnesium (hasn’t helped at all even at very high doses), and thyroid levels were normal at the time so they said it was unrelated. I have also been tested for a couple other disorders but havent tested positive for anything (like Addisons Disease).

Now it is important to say, I am one month post RAI and still having these spasms. They come in phases, I’ll have bad ones for weeks and weeks, then none for a month, then it’ll come back slightly weaker, then stronger than ever. It makes no sense and I’m not changing anything that could affect this that I know of. I will get my thyroid levels checked in about a week to see how successful RAI was and that should give me some more information.

[Big_goit]

in reply to: Muscle spasms with Graves Disease #1185803

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.

[Big_goit]

in reply to: Muscle spasms with Graves Disease #1185802

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.

[Big_goit]

in reply to: Graves Disease and Radioactive Iodine Treatment #1185716

Hey! I’m a 17 year old from NC who was diagnosed with GD least year at age 16 lol so we have a couple things in common! I got a “total” thyroidectomy in August 2019 but a large portion of my thyroid grew back in less than 6 months so I’m now in the process of scheduling radioactive iodine treatment for the near future.

It’s awesome that you did your senior project on thyroid related stuff! Would you care to share more about your experience with radioactive iodine? How did you feel in the days after treatment? Good luck at East Carolina University!

[Big_goit]

in reply to: Newly Diagnosed and not doing well #1184646

Hey I’m so sorry to hear you are suffering so much with this condition. Many, many fellow patients struggle with all the ups and downs of this condition. I have definitely been there. Just know that it is not uncommon to feel this way in the beginning because it is seriously overwhelming! But it will get better. Things will stabilize and you will have control over your life and your thyroid disease. It’s rough in the beginning but for most people, this is the toughest part and it gets much much better. I’m glad you took action to get a different endocrinologist because that can make a huge difference. It’s also been very helpful for me to see a counselor throughout my thyroid journey, one who understands the disease and can give some guidance through this crazy time in your life. The way you feel now, though completely valid and understandable, will not last forever! Good luck as you search for a treatment that works for you and as you progress in school! You can do it!

[Big_goit]

in reply to: Need Coping Tips #1185799

Hello! I got diagnosed with Graves disease last spring and went through thyroid surgery in August 2019. Since then, my numbers have been all over the place and I know that it can feel like a crazy roller coaster a lot of the time. I’m so sorry to hear you are suffering as I know what a lot of your symptoms feel like. It has helped me to get frequent blood draws to see where my levels are at and if my thyroid medications need to be adjusted. My dog has been an amazing help through my thyroid journey being there every day to help me get out of bed and motivate me to exercise and work at my goals. I have struggled with mental health issues for a long time and seeing a therapist through my roller coaster ride of emotions and symptoms has been helpful. I hope you find some relief soon and good luck! This too shall pass

[Big_goit]

in reply to: RAI scheduled – having second thoughts! #1185795

Hey! I got diagnosed in spring 2019 and had a “total” thyroidectomy in August 2019 but the small amount of tissue left in my neck grew exponentially fast and I am back to where I started a year ago with a goiter and hyperthyroidism so I’m looking into treatment options yet again! I just made the decision to get RAI treatment since I have tried the other two treatment methods (medicine and surgery). I have some concerns too as it seems scary to get my thyroid radiated lol. My main concern is fertility issues and possibly increasing the risk of certain cancers. Obviously I can’t advise you but this is a very common treatment and many people seem to come away from it with no long term issues. Also, I know of two people in my life who got RAI and had multiple successful pregnancies. But it’s always a good idea to research! I hope you find the answers you’re looking for and good luck on your upcoming RAI treatment and overall thyroid journey

[Big_goit]

in reply to: Thyroid regrowth after “total” thyroidectomy #1185769

Thanks for your reply, Kimberly! That article was very helpful and does sound a lot like my case, I appreciate that.

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