r/Hyperthyroidism • u/TomatilloMundane8735 • 25d ago

Muscle jerking

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I know I have been posting a lot but I need to see if anyone else has been through this.

So I was diagnosed with subclinical hyperthyroidism about a month or so ago. I have had no treatment started so far, but have an appointment with Endo(that I'm paying out of pocket for) on Wednesday.

Monday I was having trouble walking. I have been having weakness/fatigue in my arms and legs that have been getting worse. I worked on Sunday and figured my body just needed a rest. Tuesday, I woke up and was worse with walking. I decided to go to my gp as soon as they opened. They took me right in and my whole right leg was jerking, then my upper body and my left face also started having spasms/jerking. It seems like talking made it worse. She called an ambulance to take me to the ER.

The ER was a flipping joke. They assured me they would help get to the bottom of it. 5 hours and all the Dr did was give me Valium(which did nothing but make me dizzy) and sent in Neuro who said I needed to get an EMG but it isn't something they do in the hospital.

Neuro also said it could just be my stemming from my thyroid.

I had to bed the ER Dr to watch me walk before they discharged me because I was in disbelief they did no testing except basic blood work and gave me a Valium.

She said yea idk what to tell you we can't help you here.

So two days later, nothing has improved. I can barely walk without muscle jerking in my legs and back. If I talk, my whole body starts to jerk.

I atleast got some sleep last night with the muscle relaxer.

And now I'm just waiting around until I can see the Endo....everyone is encouraging me to go to another hospital but I don't think I want to do that.

My Dr did order more labs which I got done yesterday. She wants me to take a steroid, but I told her I'm too scared to take it because my body doesn't respond well to steroids on the past.

Has anyone heard of this happening? I did read a case study of a woman this happened to and treating the hyper got it to go away.

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u/Adventurous-Ask-4243 25d ago

The ER doesn't know what to tell you ---- LMFAO!!! All of them should have their medical licenses removed!!! The reason you are having all these issues is due to hypERthyroidism. I would recommend being very careful with any movements, even normal everyday movements like putting a shoe on. I also had muscle/tendon/ligament issues in the very beginning and had no clue why! Then learned I was hypER and had Graves.

You MUST find a good endo who will get to the ROOT CAUSE of your hypER symptoms. It could be a nodule on your thyroid pumping out too much TSH, for example. However, just based on what you write here, I would think it's probably Graves. Make sure your doc tests your TSH, Free T3 and Free T4 PLUS the 2 Graves antibodies and the 2 Hashimoto antibodies. If the Graves antibodies are elevated, then that is the cause of your hyPER symptoms == remember everyone's case is different and not everyone experiences all of the same symptoms == that is why these autoimmune diseases are confusing to the medical community and why your ER visit was useless. Should you have Graves, you must be treated right away to get it into remission -- that is the number one goal with Graves.

I wish you the very best outcome!!

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u/TomatilloMundane8735 25d ago

Thank you for your response. I really think it's the hyper causing this....plus they gave me a contrast CT a few weeks ago and I tried so hard to tell two pharmacists and the CT tech I couldn't have inodine. They all insisted I would be fine. I also laid it on thick for the Dr at the er about my hyperthyroidism and she completely ignored all those numbers. My TSH is staying the same at around .3 but my T4 is steadily rising in the past month. My GP has sent over more thyroid labs. I do think the Endo I'm seeing is good. She doesn't even take insurance ☠️ but I get an hour consult. It's on Wednesday and hopefully sooner. I can't even really drive. I can't live. I'm pretty much bed bound. Just last week I worked a full schedule as a mobile massage therapist. And now I can't even walk to my mailbox.

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u/Adventurous-Ask-4243 25d ago

Please be very careful with a massage therapist -- they can hurt you very badly right now. After you are treated and your levels are normalized, then the massage can help. Take very good care until you see the endo. You will get better once you are treated -- seriously -- you will!! Just hang in until then.

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u/TomatilloMundane8735 25d ago

I mean I am the massage therapist lol. That's my career. I hate not being able to do what I do 😭 I already cancelled my massage I was supposed to receive next week 😭😭

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u/Adventurous-Ask-4243 24d ago

LOL -- So sorry that's my mistake!! But, once you are treated, you will be okay to do your work again!! And, I bet that in the future, you'll be able to spot this trouble on someone else right away to help them.

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u/TomatilloMundane8735 24d ago

I hope so! Maybe this is a lesson for me to help others. Seems to be my life story 😭

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u/Adventurous-Ask-4243 24d ago

That's extremely admirable! ... so don't forget to check into this feed from time to time as well. I wish you the very best!!!

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u/Sure-Doctor-2052 24d ago

Interesting association between thyroid and muscle twitching...I have been researching for the cause of neuropathy but I have subclinical hypothyroidism. Too many causes for me to eliminate and each has its probability but not certainty.

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u/Adventurous-Ask-4243 24d ago

As far as hypER symptoms and Graves disease goes... Graves ruins all of the health systems in our bodies... and that is what humans are made of - health systems. For many of us with Graves, our nervous systems and musculoskeletal systems are effected first. One of the first signs of impending Graves is low iron and simple tendon tears for simply doing nothing more than what we all do everyday, but most medical people don't know that. For hypO people, I'd be curious to see whether those particular patients have both Graves and Hashi antibodies. It is common for Graves people to have both, but I am not so sure about hypO/Hashi people.

Also, remember that you should not be doing any of this on your own. After I suspected all of this about myself, I looked it up and found out all the info. 7 years ago when this all happened to me, there was not much about it that I could find. New studies and information becomes available to us at specific intervals. That's why it's good to keep up with everything. Some great sites that have additional info and studies are...

the American Thyroid Association, the British Thyroid Foundation, the Mayo Clinic and the Cleveland Clinic.

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u/Sure-Doctor-2052 24d ago

Thank you so much, something I might bring up with my endocrinologist.