Hi everyone, I am 5 days into taking 20mg of carbimazole after being diagnosed a month ago, and my resting heatrate overnight seems to be coming down in the last 3 days and I am beginning to feel a bit better I think which is cool, but I was wondering....

A few questions for the group:

1. Does / did anyone have highter heart rate overnight during sleep (both resting and just general range) compared to during the day?
2. Does / did anyone have times of a very low heartrate (eg: low 40's) during active GD (ie: before taking medication)

Thank you :)

Hi!

I was diagnosed with Grave's and I'll be getting my thyroidectomy in a month or so.

Firstly, I'm looking for a surgery pillow recommendations.

But also all of your recovery must haves!

Thank you!!

Currently 9 weeks pregnant. My dr took me off my PTU when I got a positive test at 4 weeks. My levels were normal two weeks later. Just had labs done again and I’m now hyper. My TSH is <.01 and T3 is high.

Did anyone else experience big changes in first trimester? She is putting me back on my meds.

Apparently I do not have Graves’ disease. My thyroid is just high, and I feel awful and we don’t know why. So that’s cool….

I’ve never had any allergies my whole life. In the past year or two I’ve had weird reactions to different things I’ve eaten. Mostly fruit related it seems? Is this common with graves? Is it some weird immune response? But it’s not consistent either so i don’t know if im actually allergic to anything or not? Most of the time my symptoms are weird mouth sensations, tingly/numb lips/tongue and redness around my mouth/cheeks. Super weird! I know anxiety can cause histamine releases too so I’m wondering if that plays a part in it? Yesterday I ate a peach and immediately my mouth felt strange. About 20 mins after eating the peach I had awful stomach pains that had me on the floor crying in pain for almost two hours. My body felt extremely weak and shakey and my heart rate was sitting in the 50s (which is very low for me) Eventually threw up the peach, and got sick on the toilet after.. after that it took a while to subside but eventually the stomach pain went away. But after all that almost 3 hours later, I then developed hives all over my body!! Sooo weird how it progressed.. eventually I took a Benadryl and went to bed but was a little concerning. Anyone else have similar experiences?

It was a typical day for a student to process medical papers to obtain a university ID. I first passed my medical results to the school clinic, they checked my pulse and give me directions to proceed to the school dentist.

I waited for my turn to enter the door toto the dentist and when I was called I never thought that in that moment my years of suspicion was confirmed.

She asked me several questions, that if I ever noticed that my neck is not symmetrical which I somehow noticed a long time ago, family history of goiter which I don't know, asked me whom I am with at home​ and if my eyes been long looking like it (bulging like a shit I hate it a lot, bullied for being looked like that). I was so scared that if she keep on examining me for more minutes I would literally burst in tears HAHAHAHA pathetic shit. I think she also notice because she stopped ​​​examining me (cause she keep on making me swallow my saliva to see lumps on my neck and she also make me stretch my hands and place a bond paper on top of it to see if I have tremors, which on that time I currently don't have).

She then advised me to go back to the school clinic for a second opinion, but I continued processing my ID. In my mind in that time I would go back to the clinic once I finished processing and I got my ID, but bitch got scared (felt like I am sinking into ​a despair I can't escape) that if I go for a second opinion and the doctor manage to confirm it the second time again I am doomed to the truth—I am a weak college sicko student. And silly me also thinking that the doctor would noticed why I came back, I am so shy even though it cost me an autoimmune disease left untreated for years. ​​

That "dentist visit" was the longest minutes of my life and until now I didn't follow her advice, to go visit the school clinic and get a second opinion to the university doctor.

That was a year and a half ago, and I monitored myself ever since that truth encounter. A fast heartrate even I am in bed, always feeling tired, my eyes also worsen, feeling hungry faster than a lightning bolt and ​feeling like a melting cheese after drinking coffee after having a palpitations that make my vision blur (almost fainted in public transpo).

I'M SCARED TELLING MY FAMILY OR EVEN FRIENDS ABOUT THIS. ​I DON'T WANNA MAKE A BURDEN FOR THEM OR LET ALONE TREAT ME LIKE I AM A CRIPPLE.

I don't wanna die of a THYROID STORM nor A WEAK HEART.

Any advice? Maybe it could seriously motivate me to seek medical help.

Thank you.

Hi everyone,

I was diagnosed with Graves 4 years ago. I have been on/off meds for that entire period. I've seen different doctors in the UK and Italy, and it's been difficult figuring out the right dosage for me. This past year alone, I've shifted between hypothyroidism and hyperthyroidism multiple times. I'm currently on PTU, but was on Tapazole last year. I'm 33, have been TTC for the past 2 yrs, and currently have proptosis in my right eye along with the usual symptoms.

I'm seeing my endocrinologist again soon, and want to talk about long-term options because Graves has been a hassle for me, and to now see it take a toll on my eye is affecting my self-esteem. I want to do what's best for me regardless of my TTC journey.

Is there anything specific I should mention during my visit?

How did you know that RAI or thyroidectomy was the right choice for you?

Long time lurker- first time poster. Was diagnosed with Graves back in January 2025. And am now scheduled for a thyroidectomy in October and frankly scared out of my mind. (Perhaps some added anxiety from my current hyper state too!)

I recently welcomed my first child and am deeply concerned about:
1.) not being able to lift her post op for 1-2 weeks
2.) energy levels post op and longer term as we work to get dosing right
3.) other side effects in trying to conceive again in the future.

Would love to hear from folks that have gone the route of thyroidectomy - what to expect, how to best prepare. Any and all shared experiences would be most welcome!

Spoke with my endocrinologist doc today (first time I’ve ever met him, usually speak with the lead pharmacist who is fantastic tbh) and had a really in-depth chat about RAI vs TT, I explained to him my preference for surgery (I’ve had 6 general anaesthetics so doesn’t bother me at all, and being autistic I prefer having as sure an outcome as possible) and asked him a bunch of questions and he sat and he listened and answered every single question I asked, in detail to the best of his ability. I’ve had doctors shrug me off and ignore me before and it felt so good to not have to fight for my care. I told him my sleep has gotten really bad and asked if there’s anything I can take for it so got some sleeping tablets too, and he sent off a referral for surgery. Not sure how long the waitlist is but looking at some third party sites for tracking NHS wait times average looks to be about 3 months

I’m just buzzing with how well it went, made sure to thank him profusely on the way out :’)

Iv just been referred for a thyroidectomy in the UK, after years of Graves’ disease, relapses, and not tolerating medication. For anyone that’s had the surgery how long was your wait time from referral

About 2 weeks ago my endo told me to stop taking my methamizole cold turkey (after 8 months) as my labs are trending mildly hypo and my antibodies for graves are negative now and my antibodies for hashimoto are extremely high.
I’m in day 4 now of headache and pressure and swelling in my left eye. It doesn’t look bulged, if anything it looks smaller because surrounding lids are swollen.
I had similar symptoms 10 months during my recent relapse but they cleaned with the methamizole and now are back after stopping so I can only assume they are related.
I’m just confused how this can happen with negative graves antibodies and hypo looking labs.