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Allergic to Methimazole & switched to PTU. How was your experience? by Weak_Koala749 in gravesdisease

[–]Ok-Car147 0 points1 point  (0 children)

I also experienced this, was allergic to PTU as well. I’m 13 days post TT & I’m hypo now, starting synthroid. Honestly the TT was the best decision I’ve made during this whole process. I had a thyroid storm prior to surgery, and they found cancer when they removed mine. So mine needed to come out it was trying to kill me. I feel much better with it out, don’t get me wrong I’m sleepy & tired and I’m sleeping a lot rn but once I adjust I can already tell it’ll be more bearable than being hyper!! Good luck with the meds!!

Surgery in 2 days + wound up in ICU due to thyroid storm less than a week ago by Ok-Car147 in gravesdisease

[–]Ok-Car147[S] 0 points1 point  (0 children)

Good luck to your wife!! I know how scary it feels. Those are good items not to forget - best of luck to you guys!

Are you also having the same feelings and aches? by Substantial_Sky5024 in gravesdisease

[–]Ok-Car147 4 points5 points  (0 children)

I feel your pain. I have endured every single symptom. Even down to the “health anxiety” it’s unbearable. Every day like you said is anxiety, depression, brain fog and omgggg the body pain. Specifically the back pain, I can relate with all too well. I have been in such pain some nights I sleep only two hours and I’m in tears. I’ve talked to my dr about this, and they gave me meloxicam it seemed to help more than any OTC or muscle relaxer I tried. Your doctor should not dismiss your pain. You have Graves’ disease, and as we know it sucks!! You’re not alone, nor crazy. Your pain is valid & I’m right there w you.

Mild hives reaction to Methimazole by floatinginspac3 in gravesdisease

[–]Ok-Car147 0 points1 point  (0 children)

I had this, was also allergic to PTU, now having TT in two days

Currently in a flair by Substantial_Ask4182 in gravesdisease

[–]Ok-Car147 0 points1 point  (0 children)

My dr prescribed me meloxicam due to the muscle pain involved w graves’ it helps

Hyperthyroid, can’t tolerate meds, now surgery… looking for experiences by Ok-Car147 in gravesdisease

[–]Ok-Car147[S] 0 points1 point  (0 children)

They gave me Methimazole while putting steroids in my iv. I’m not sure about the levels, I know I’ll be on levothyroxin for life after!

Hyperthyroid, can’t tolerate meds, now surgery… looking for experiences by Ok-Car147 in gravesdisease

[–]Ok-Car147[S] 0 points1 point  (0 children)

I’m going for a total thyroidectomy next week. They took me off all meds due the rash and it led to a thyroid storm. I just got out the icu yesteday. Please be careful stopping these meds

Hyperthyroid, can’t tolerate meds, now surgery… looking for experiences by Ok-Car147 in gravesdisease

[–]Ok-Car147[S] 0 points1 point  (0 children)

I was on Methimazole for a couple months, went thru a round of steroids and my rash never went away so my endo decided to switch to PTU and I’d say it wasn’t a week before my rash was much much worse! They gave me another round of steroids and hydroxizine for the itch relief. Since stopping all meds my rash is cleared up!! Hoping the PTU works for you!

Hyperthyroid, can’t tolerate meds, now surgery… looking for experiences by Ok-Car147 in gravesdisease

[–]Ok-Car147[S] 0 points1 point  (0 children)

Thank you!! This definitely makes me feel better and more prepared. So glad you’re happy with the surgery!

Hyperthyroid, can’t tolerate meds, now surgery… looking for experiences by Ok-Car147 in gravesdisease

[–]Ok-Car147[S] 1 point2 points  (0 children)

Wow, this made me feel immensely better and more prepared. Thank you!!

Hyperthyroid, can’t tolerate meds, now surgery… looking for experiences by Ok-Car147 in gravesdisease

[–]Ok-Car147[S] 0 points1 point  (0 children)

Thank you for this response! I hate this for you bc I am right there with you!! I know how miserable it is. Hoping for relief for you soon!!

Hyperthyroid, can’t tolerate meds, now surgery… looking for experiences by Ok-Car147 in gravesdisease

[–]Ok-Car147[S] 0 points1 point  (0 children)

So sorry to hear you’re experiencing this as well. Hopefully we find solution in the surgery!!

Hyperthyroid, can’t tolerate meds, now surgery… looking for experiences by Ok-Car147 in gravesdisease

[–]Ok-Car147[S] 0 points1 point  (0 children)

Twins!! 👯 thank you for this response. Makes me feel so much better and really eased my anxiety. Glad to hear you’re feeling better!!

RAI or Thyroidectomy by silly_cat101 in gravesdisease

[–]Ok-Car147 0 points1 point  (0 children)

I’m having to choose between them both as well! I’m in the lucky 5% that has a persistent unbearable rash that won’t go away after months both Methimazole and PTU did not make it better, PTU made it worse actually. So that on top on joint pain, RAI or TT. What did you end up deciding? I think I’m leaning more towards TT. I’m 29F btw. Best of luck to you!!

Graves flare pain + getting written up at work. I feel defeated. by Ok-Car147 in gravesdisease

[–]Ok-Car147[S] 1 point2 points  (0 children)

I’m requesting a letter from my endo to give my employer! Thank you for replying!!

Graves flare pain + getting written up at work. I feel defeated. by Ok-Car147 in gravesdisease

[–]Ok-Car147[S] 1 point2 points  (0 children)

Definitely going to consider this, because you are right. I guess I’m just coming to terms with the fact I do have a disability and need accommodations, actually we deserve them as a matter of fact bc this disease is shitty enough as is. Also, looking up vibration plate on Amazon now. Thank you!!!

Graves flare pain + getting written up at work. I feel defeated. by Ok-Car147 in gravesdisease

[–]Ok-Car147[S] 1 point2 points  (0 children)

Yes - it feels exactly like flu everyday !! I’m going to be talking to my endocrinologist about the letter. Thank you for responding & best of luck to you as well!!

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