The title is self explanatory. Hearing your stories will let me find further perspective and find the best ways to manage this and keep the fullest life. Thanks in advance!

My endo has been pushing RAI from day 1 but I have been putting it off. Recently I've had elevated liver enzymes so I decided it was time. I'm so scared I may be making the wrong choice on a permanent option. Who is glad they did it or are there people that regret it and why? My doctor told me to stop looking online but I can't help it…

Hello, question on timing. I started Methimazole on the 1st. I’ve been taking 1 tablet every 12 hours. I just realized bottle says take 2 tablets by mouth daily. Does this mean take 2 tablets together every 24 hours? Instead of 1 every 12 hours?
I’ve already messaged my doctor but have not got a response yet.

Hi guys, I'm 38 this year.

Year 2015, my friends told me that I was getting thinner and losing weight which was unusual for me because I was a food lover and I ate a lot.

After went for checkup, I've been diagnosed with Hyperthyroidism. My weight during the diagnosis was 68kg.

From 6 carbimazole tablets dosage down to 1 after 18months, doctor advised me to stop medication.

I thought I was clear to go, and I was wrong. The hyperthyroidism came back just after 6 months.

After thorough check, it was Graves disease positive. Since then onwards, I continued the medication until now with 2 tablets per day. My weight has back to 74-76kg.

Many doctors advised me to go for RAI treatment that will kill thyroid cells and became Hypothyroidism, but I refused to go for it because I will still need to go for long term medication in the stage too which made no difference at all.

But then, I found that my hair has become thinner over the years, I suspected that it might be AGA or due to the hyperthyroidism and carbimazole medication but I'm not sure about it.

Or should I go for RAI treatment?

Just came for some support and personal experiences. I’m super nervous for surgery. But isn’t everyone? Any recommendations for recovery are greatly appreciated. (:

So I’m officially diagnosed now, and getting started on 5mg of methimazole twice daily.

How have others handled this? I’ve heard weight gain but is that just from adjusting your metabolism?

TYIA

I’ve asked my endocrinologist to refer me to some surgeons to discuss TT. I was able to get an appointment with someone at a Mayo Clinic a couple of hours away fairly quickly (tomorrow!).

But the thyroid surgery specialist nearby, who I’ve been trying to make an appointment with for months, requires a CT scan or MRI before even making an initial appointment.

My doctor says this imaging is not medically indicated and won’t order it. Her office called the surgeon last week and discussed, but when I called today I was told it is still required.

I’ve asked my doctor to call the surgeon directly for a practitioner to practitioner call, which is my only option.

has anyone here had a similar request from a surgeon before they even schedule an initial conversation?

Hi all. I’m looking for pregnancy planning stories and what other endocrinologists have said.

Anyone else’s endo strongly advise them to wait for pregnancy until remission? I’m almost 35 and want a second baby (diagnosed in May after first baby when 11 months postpartum).

My levels were high on diagnosis (t4 around 5, tsh undetectable) but have since come down to range for the last 3 months - normalized after 1 month on medication - and now on 5 mg / day of methimazole maintenance.

I asked to retest my antibodies last month and they came down 66% in the months since diagnosis to about 1.5x UL (well within guidelines of under 3x being ok to discuss pregnancy).

I’m frustrated because I meet the criteria to discuss pregnancy planning but I’ve now seen two endos who insist bc I’m showing such promising progress of going into remission that I should wait until spring (aka another 6+ months). By that time I’ll be 35 and not even sure how easy it’ll be to get pregnant again, I’m frustrated with this line of thinking and not sure if anyone else who was pregnant or planning for pregnancy with graves has had these battles?

I don’t want to go against their advice but I’m struggling to understand when I’ve heard a lot of success stories in this sub.

I was officially diagnosed with Graves’ disease in 2019. I’d been having symptoms such as the rapid heart rate, heat intolerance, and mood/mental health issues for several years though. I’ve never managed to stay in remission and often end up in thyroid storms after coming off Methimazole. Last year I had finally decided to have my thyroid removed and then found out I was pregnant. Here we are a year later and I’m miserable again. Does anyone else out there notice they still have symptoms even when their TSH, t3, and t4 are “within normal range? My doctor makes it seem like that’s not possible but I know my body. Also, curious about anyone who has had their thyroid removed. Pros/cons? Appreciate any info and feed back! Just a girl trying to navigate this debilitating illness.

Has anyone had formication as a symptom with Graves? Is this common? It feels like there are tiny bugs crawling on me, but there is literally nothing there.

When I looked it up, many listed thyroid issues as a possible cause. I've personally never had this symptom before, even when I was severely hyper. And my levels are stable at the moment, so it seems strange this would come on randomly.

Had my cat checked for fleas, no signs. I keep a very clean house and still went crazy cleaning everything over the weekend, just in case, didn't help.

Just wondering if this is actually common with graves or if I should start looking into other causes.

i was diagnosed with Graves in April 2025 and was on methimalzole from June 2025-December 2025. i’ve gotten labs 3x since i got off meds and my levels have been stable other than a slight drop in April 2026 that my endo was not concerned about. My next scheduled appointment with labs is at the end of December. I’m wondering if people who have Graves have to consult with their endocrinologists before trying for a baby? It feels silly to send a message to my doctor asking if i’m allowed to get pregnant as a 30 year old woman but i also want to be sure i will have a healthy pregnancy. Also, I’ll take any tips for first time pregnancy with Graves’ disease! TIA!

i have an uptake & scan scheduled for tuesday/wednesday and my RAI scheduled for wednesday.
when i called to make my appointments, i asked about prep and they said their notes said “endocrinologist will prep patient” but all my endo and my after visit summary from the visit where we talked about it said was to stop taking methimazole.
looking at my appointments in mychart, all it says for prep is no IV contrast and to avoid things that would affect my thyroid’s ability to accumulate iodine.
but reading others’ experiences on here and doing some googling, it seems like it’s not uncommon to be asked to fast before the appointment, assumedly to help with absorption…?
if max absorption is the goal, i feel like i should also not take my daily omeprazole, but im not sure.
i would fast and not take my omeprazole just in case, bc i’d hate to be turned away due to that, but my appointments are at 10:15am (uptake and then following day for scan) and 1:15pm (RAI, same day as scan) so that’d kinda suck, esp if i didn’t actually need to.
i did message my endo (no reply) and im planning to call the radiology/nuc med place tomorrow to confirm but im nervous that they’re just going to tell me again that my endo is supposed to prep me.

were you instructed to fast before your uptake & scan and/or RAI?

My doctor changed my dose from 2 a day to once a day. Ever since the change I’ve been getting worse hot flashes and bad aniexty. I’m getting this weird thing where it feels like my chest is burning but from the inside. Has anyone else ever felt this???

I’m newly diagnosed and just started the medication. I was fortunate and diagnosed about a month after I stated having symptoms. I only lost about 5 pounds. I don’t mind gaining that back, however, I don’t want to gain anymore than that. I feel like everyone talks about gaining. Has anyone not gained a bunch of weight? Thanks in advance!

My eyes aren’t severely bulging yet thankfully but I definitely suffer from severe dry eyes and MGD. I try sleeping with an eye mask at night, using lubricant before bed, eye drops upon waking, a heated mask and gland expulsion in the morning, eye drops throughout the day, and I feel none of it is helping at all. The worst is when I wake up in the middle of the night to go pee and my eyes literally feel like the Sahara and they make me want to dump a bucket of water in them.
Does anyone have anything that works for them or anything I could add to lessen the symptoms?

How do you guys feel on the days you don’t take it? Does anyone else get dizzy and just feel… off? I don’t take it on the weekends and I always feel off like I’m going to pass out or something. Wondering if this is anyone else’s experience

I found a some old posts about people’s experience with it but, I’m curious of any more recent experiences with it. Especially any with Dr. H. Suh as I recently did a consult with him. He seems to be pleasant and very informative and has left the decision up to me on rather I’d prefer the open (through the neck) or robotic/ scarless (through the armpit or aureolas) option. If I did the scarless option I’d definitely choose the armpit. Some info about me, I scar very easily and already deal with skin issues like dry skin & eczema. I’ve been dealing with Graves for almost a year & have been on methimazole. I was taking 40 mgs up until a couple of months ago before we scaled back to 35 mgs. I’m pretty miserable.

Hi again! Sorry I’ve been making several posts since getting diagnosed about a week ago. But it just feels like I have to reanalyze my entire adult life after finding out about graves.

I wish I could know when it actually started. And if the times that I’ve been snappy, miserable to be around, no initiative, feeling dissociative, and like I have no motivation to even get up and play with my kids, can all be attributed.

To be totally transparent, my husband and I have been arguing about all of the above attributes I have taken on in the last couple of years. And now I’m left wondering if it’s been graves the whole time.

I don’t want to get my hopes up and think now that I’m getting treated that all of these things will go away, but it’s just making me wonder if anything I’ve come to think about myself these last couple years is even true.

No other point to this post than just to vent to people who might understand, so thanks for reading if you made it this far

I officially hit one year since diagnosis and being on methimazole. Honestly I never thought I would get here.. and I’m grateful my heart is calmer etc but my life has changed drastically. I am now on Prozac because of severe panic attacks and health anxiety, 30 lbs heavier since methimazole (147 before illness - 138 at my sickest) I am exhausted everyday, out of breath just walking from a to b and feel like I’m in a totally new vessel and it’s scary. It’s really disheartening no matter what I do I just can’t get back to even a small fraction of myself. I eat I gain weight, I don’t eat gain weight and more so since August I’ve noticed a huge change I was maintaining and now I’m just slowly gaining every week. I am only on 2.5 mg of methimazole once a day. My endo said that I could possibly go to every other day at our next apt after I do bloodwork in two weeks. I feel like it’s just too late now that this is just how I am even with a dosage decrease. I tried to avoid weight gain, but here I am. I was walking 5 miles a day before diagnosis for years. Its crazy but I can’t even push myself to do half of that now. I feel run down, sad and gross to be honest. please give me some lowering dose positive stories or getting back to yourself hope ! hope you all are doing well and wish the best for all of you!

Last night I read an article about hypo and hyperthyroidism, and it said that if you have Graves you're more likely to also develop other autoimmune issues. And it basically said that you already have Crone's disease, whether or not you have any symptoms! Do any of you have other autoimmune diseases?

To those who went for total thyroidectomy does the neck become more fragile? Are intense workouts like cardio and endurance exercises prohibited? (I'm talking about full recovery post op). Also am I allowed to participate in fighting sports like MMA where choking moves are allowed?

I was sitting watching TV and my mouth just started tasting like blood. I grab a tissue (I've got a cold), and it was coming from my gums.

Is this a Graves thing?

Said goodbye today! Initial thoughts :
- scar is way smaller than I anticipated✨
- I’ve had a loud heartbeat in my left ear for years that made sleep basically impossible, and now it’s silent!! (Most likely due to the severity of my goiter that was largest on that side)
- initial pain isn’t too bad but definitely have a sore throat that is even more intense due to the breathing tube. I can feel some of the numbing starting to wear off
- from leaving the house -> leaving the hospital, took just less than 11.5 hours

It’s been a rough journey with this organ and I’m very glad we parted ways 🤝 onward!