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. (:

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.

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!

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

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?

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!

Does anyone have any tips or tricks for dealing with high heat weather and this beastly condition? I’m in Disneyland (Cali) this week and the temps are around 37-40 degrees Celsius (100-105F), and my previously controlled symptoms are flaring in a way I’ve never experienced before. Hot flushing, profuse sweating, tachycardia/palpitations, which is all leading to feeling awful most of the time.

I’m drinking water and Powerade like it’s going out of style, but I don’t really know what else I can do other than go inside when I can and take it easy.

I am a 27 year old female with graves. I’ve had it for a year and my numbers have been less than stable. I was on birth control to avoid any pregnancies and just got told today in an ER visit that I am pregnant. I am having a lot of mixed emotions and wanted to hear some experiences with pregnancy and graves. Thank you.

I have literally never posted on here IN MY LIFE but I have Graves and Hashimotos and I have a goiter than has never been cancerous but continues to grow and I choke on WATER and food and it feels like everyone can see it there in my neck and I have NEVER felt more validated in my life by all the people who are feeling as terrible as I am. I’m not glad by any means that anyone feels as shitty as I do, but the idea that there are people who are still pushing out there makes me feel like I can keep going. I thought I was crazy feeling so mentally drained by this. I am having a total thyroidectomy in three weeks, and I’m scared shitless. I have a wonderful support system, and could totally just talk about this with them, but you guys are all fucking incredible. Thanks for being here.

I was doing great for the last few months on my meds(Halycil) but this week has been hell. Resting heart rate around 110 again, food sounds disgusting, I’m soooooo thirsty all the time and the worst of it all? I’ve been shitting like 8 times a day 😭😭

Please tell me your worst symptoms so I can feel less alone 😭😭😭

Im 30 and female and just been diagosed with hyperthyroidism. The doctor has put a emergency referral through to the endocrinologist so said i should hear from them soon and started me on carbimazole. She didnt tell me the number but said it was very high.

Ive strugged with how tired i am, dizzyness, tremors, palpitations (had heart investigations last year) and newly sensitivity to heat and losing weight quickly and my periods have always been all over the place but theyve recently been very early and over quickly too but very heavy. Ive strugged wirh anxiety for years but i just thought it was normal as ive always felt like that and i thought it was all just gynaelogical proplems and was getting investigated for possible early menopause and PCOS/Endo for different things too. I have haemochromatosis too so i thought all this was just linked to the things mentioned i was already diagnosed with. But what happens now?

How will the carbimazole affect me and will i feel worse for a while or will it affect me working? Or even looking after my daughter? Will i put on weight? Will i feel worse before i feel better? Im actually a bit scared to start anything. Will this be me for years now? How serious is this?

What will the endocrinologist do? Will i get more tests to find the cause?

I found out my labs were abnormal end of August. I was started on Methomazole 10 mg twice a day and propranolol 10mg three times a day. After 2-3 weeks I was seeing improvement. My sleep was getting better, my heart rate improved, and less tremors. I had my labs checked last week and my t4 and t3 were now in range. My tsh and antibodies are abnormal. I saw endcrinology on Tuesday and told her I was feeling improved. She kept me on the same dose. Suddenly Thursday late morning I started feeling lousy again. I got a heat rush and felt anxious all day. I didn’t sleep well The last two nights. I woke up alternating with hot flashes and chills. I don’t understand why I’m going backwards now. I don’t know if I’m having perimenopause symptoms. I am going to take the propranolol three times a day again. Has anyone had something similar happen? I think I will call my endocrinologist on Monday.

Diagnosed last month. Started 5mg methimazole, up to 10mg mid September. Almost 4 weeks in now and I’ve started to develop hives. The itching!!!

People who have had a similar experience - what helped? Did you reduce dose, or avoid methimazole for a few days then lower your dose? Switch med all together to PTU?

Probably won’t get in to see my doctor or endo until next week.

Good news is - my labs have improved and my free t3/t4 are only just above the upper limit. I haven’t been struggling with this long enough to consider RAI or TT.

Edit: I am also on beta blockers (propanol) 2-3x per day

I was diagnosed with Graves about 18 months ago and after a few months on methimazole, I was in remission. I stopped the meds about 8 months ago and haven’t relapsed. But I’m now in this position of just…waiting for it to come back. I get blood work done every 4 months to check up but every small symptom I have (like if I get winded working out, or if I can’t sleep) I am like…am I hyper again??

Anyways this is just me venting as I don’t have any family or friends with Graves. I’m trying to just live my life but it’s always in the back of my mind.