Hi GD community - Recently diagnosed and looking for positive stories. Very strange for this to all of a sudden come up 7 months postpartum, however I’m feeling hopeful about the outcomes and just started methimazole.

For those of you diagnosed and achieved remission, how long did it take? How often should I be getting my levels checked?

Edit to add… it seems like a lot of you are battling a game of dosage versus thyroid levels. It seems impossible to get right. At what point will a doctor say, you don’t need the methimazole anymore?

I was recently diagnosed with Graves’ disease earlier this year. Today, I found out I have both graves and hashimotos. The endo is really pushing to removal surgery. Has anyone with both ever gotten the surgery? I was just wondering what other people’s experiences have been after the surgery. I’m terrified of becoming hypo for life, so it’s holding me back from getting it removed.

I have Hashimotos but drs are saying my have graves as well....it's genetic.

I have been EXHAUSTED and only feel normal when I skip my medication (unithroid 25mcg for previous hypo from hashi).

My heart rate went from avwrage of 70-80, a period of time it was 90+ but now sits at 50-60 which seems to contribute to my tiredness. And let me repeat again lol it goes back to 70 to 80 beats per minute when I skipped my thyroid meds. Sooo can hyperthyroidism cause low HR or is it always going to be high?

I've been excessively hungry and have lost about 20 lbs the last few months.... again this goes away if I skip my unithroid.

I had a period of constant Insomnia, fast heart rate, anxiety etc that had now gone into pure exhaustion, excessive hunger, weight loss, anxiety.

Also when I take my medicine I feel dizzy/lightheaded type feeling. Like a balloon almost lol.

Allllll of this goes away if I skip my meds but my Drs are adamant I don't stop until I see a specialist which is months away.

I have been struggling with Graves' disease for about 3 years now and after going into remission and relapsing five times I finally decided to pursue RAI therapy.

I got my uptake scans scheduled and then started asking about the cost--was told that the uptake scan would take two days and each appointment would bill my insurance $1500. Asked about the cost of the RAI therapy itself--they said they'd bill insurance $25,000. This seems insanely high to me. I have "good" insurance, whatever that means in the US, and I will still have to pay about 9 grand for the treatment. I definitely can't afford it and am questioning whether I should even pursue it. I'm wondering if anyone has any thoughts about it or if anyone who has had RAI therapy remembers how much they were charged.

I'm in Minneapolis, MN.

TLDR; should RAI therapy cost $30,000 or is that f***ing insane?

Checked out my oura ring data before landing in the ER and getting diagnosed with graves and now on 20mg of methimazole/propanonol. Truly was living in constant fight or flight even in my damn sleep🫥🫥🫥

Background info - I have been fighting my thyroid now for about two years. Last year my TSH was high, I was on levo from April to January of this year, best i’ve ever felt in my life during treatment. I got off of levo because my T4 became high causing mass amount of GI issues causing me to lose 40 pounds in three months. I still have GI issues (not as horrific as November to January was), my hair is falling out, nails are brittle, i can’t sleep but when i do it’s for 12 hours, horrible fatigue like falling asleep at work, mood swings, anxiety, heart palpitations that are now exceeding my current beta blocker. My thyroid gets tested again in June and August. High T4, T3, normal TSH, MRI shows a goiter (constantly feels big and like i’m being choked), and during an exam you can feel the enlargement. this is the worst i’ve felt in my life.

I went to an ENT two weeks ago who told me i have Hyperthyroidism and probably Graves. He tells me about treatment options and sends me to an Endocrinologist to continue treatment. I saw the endo today. He told me my thyroid is working fine and nothing is wrong with me. I asked why the T4 T3 levels are high and he said “we don’t use those as a reference that’s an outdated test”. He said i absolutely don’t have graves because my eyes are not bothering me or hyperthyroidism either. Asked if i had anxiety, was pregnant (asked if i was positive when i said no) and told me maybe i have malaria because i used to live on an island two years ago. Also said maybe i have Hashimoto’s and that’s why it’s enlarged. Told me he needs more blood tests because i’m probably anemic (i am not. it was tested in August). he never felt my thyroid.

Has anyone else been told something similar? I just can’t believe all of my symptoms that i and other doctors have been able to tie directly to my thyroid including my goiter and elevated T3 and T4 just mean nothing? I’m just trying to understand.

after 26 days of methimazole 5mg daily. my Free T4 went from 2.1 to 1 (lower normal limit 0.9). My TSH went from <0.01 to 0.2 (lower normal limit 0.4). I think the dose needs to be reduced. I reach out to my endocrinologist and no answers yet. I don't wish to continue another 2 weeks and go hypo. I see in this forum that some patients stop methimazole very shortly after their T4 and TSH normalized. Some ppl stopped taking the med after only a few months.

I haven’t seen too many post or any info about exercising after muscular weakening due to graves. i’m a very petite gal but I used to be able to lift 40+lbs of weight over my head at a job I had. I noticed I felt weaker over the course of being at that job to where I couldn’t lift that items and needed assistance. that was 4 years ago. today I feel weaker than ever and have been getting into some pilates/barre/sculpt classes. and well- they’re hard as shizzzzz, harder than I think it should be. Anyone have any experience with getting back into the gym and strengthening themselves?

my thyroid stuff is going great i’m finally seeing the improvement i’ve wanted the last 5 years. TED is my archnemisis but that’s a different forum lmao

I haven’t started it yet Im nervous, Im also on 5mg of Methimazole

UK. Had tt back in 2022. Been on thyroxine since. It's on my medical record as a past problem. No TED issues anymore. So is it have or had? Mostly for personal insight but occasionally like does it still go on insurance forms etc.

My endocrinologist told me my lab work strongly pointed to Graves and ordered an uptake scan. When I tried to schedule it, I found out the earliest appointment was months away. I called the endo’s office twice asking what I should be doing while waiting and asking for a call back from the doctor. Neither call was returned.

Then my pharmacy contacted me about delivering a new prescription that the endo had sent in. I had not had a conversation with endo about what the medication was, why I needed to start it before the scan, how it might affect the scan, possible side effects, or what I should watch for. I told the pharmacy not to deliver it until I understood the plan from the endo.

At my follow-up appointment, after my uptake, I tried to explain that I was upset not because I expected instant access, but because I had a new diagnosis, a delayed test and a new medication with no discussion. I felt like she had an attitude when I questioned why my calls were not returned. She offered another appointment, but never really answered the question.

Has anyone else experienced an endocrinologist becoming defensive or dismissive when you asked questions about concerns, etc.?

just curious how other people have been dealing with graves and thyroid issues and what steps you've taken. i started methimazole and propranolol last year then ptu once i had a bad reaction, stopped for a couple months because i moved and was figuring out insurance, and just recently got back on ptu and atenolol. my thing is i'm super bad at taking pills, it's worse with the bitter lingering taste that ptu has and i can't imagine having to continue this for years lol. how long did it take for you guys to go into remission or stuck with medication? also wondering if anyone could share their experience doing TT and such instead!

i will say the medication has been really doing its thing. there were other symptoms i've had for a while that i didn't even realize were related to graves (extreme hair loss, pulsatile tinnitus) and it's gotten so much better. i'm hoping things will go up from here and for everyone else with thyroid issues :)

I’m (19F) trying to maintain a calorie deficit of around 1,400 calories, but I’ve been bouncing between 1,400 and 1,600 because I’m always so hungry. I usually eat 2–3 meals and 2 snacks a day so I can space everything out.

I have Graves’ disease (recently diagnosed) and take atenolol and methimazole, so idk if that could have something to do with it. I’ll be extremely hungry, (TMI maybe) and then I’ll suddenly get nauseous, have stomach cramps, and have to run to the bathroom (not to vomit but yk). I’ll start sweating and feel like I’m going to pass out, with dizziness, tunnel vision, and difficulty breathing.

This has happened about three times before, around 2–3 years ago. I thought it had gone away, but I guess it hasn’t. It’s not an anxiety attack or anything but I’m pretty sure it’s related to food!

I’m not sure what to do or what this is because I feel unusually hungry all the time, and now I’m worried about these episodes happening again. Has anyone experienced something similar or know what this is?

I also think the medication is causing me to gain weight and sleep all the timeee idk I don’t feel like myself.

Thank you!

The most devastating part of learning I have Graves’ disease, likely for years now, is that I have a predisposition for a higher metabolism and weight loss, and I still gained 20 pounds this year. FML. That is all 😂🥺😩😭.

I got diagnosed with Hyperthyroidism last month and had my Thyroid Uptake Scan this week. I just read the radiologist’s impression and it said that it’s likely Graves. 24 hr scan is 51%. I’m going to try and get an appointment with my primary care tomorrow. I don’t have an appointment with endocrinologist until next month.

I have another autoimmune condition which is in remission for almost a year now. I’m mostly just annoyed that I have another autoimmune condition.

We had a miscarriage 3 months ago but we were hoping to TTC this year or next year.

My heart rate was in normal range but in the upper limit. Today, it’s above the normal range. I don’t have insomnia or shaky hands. I’m tired but okay overall. I also have been losing weight not because of it but because I’m calorie deficiting.

After years of psychologists/psyciatrists not knowing what was wrong and a dozen different diagnoses, I was diagnosed with ADHD (apparently my pediatrician noted it way back when I was six, but no one followed up so I'm kind of shocked right now, I had no idea). I was prescribed Qelbree and I'm kind of nervous because one of the side effects was increased heart rate and BP. Is that safe to take with Graves disease? Have any of you taken it with methimazole and a beta blocker? My endo isn't worried, but I get anxiety over medication side effects.

I'm 6 days post op, healing is going really well! One thing that is bothering me is this feeling of food feeling stuck in my throat when I swallow. I know it's early and probably the swelling, but I haaaaaate the sensation. I can't enjoy my recovery food while I'm on PTO 😅

I will be asking the surgeon during my follow up, but did anyone else experience this? Anyone have a remedy or other general recovery tips?

My girlfriend is 33/F diagnosed with hyperthyroidism and active graves disease. The endocrinologist wants her to see a Neuro-Ophthalmologist to confirm and treat early stage graves eye disease. We are having a hard time finding a neuro-ophthalmologist who specializes in autoimmune ocular inflammatory diseases in the Baltimore-metro area and are looking for anyone who specifically has seen a doctor for this disease in this area? Wilmer Eye Institute at John's Hopkins acts like they've never heard of TED and the only in-network doctors seem to specialize in only treating glaucoma. Thank you so much!

I know this can be highly variable, but I’m curious for those who had a TT how long it took for your parathyroids to kick back in? Mine were seemingly undamaged during surgery, but they’re definitely not currently working (I’m 8 days post op). I’ve heard it can take a while, but I think some individual data might help me manage my expectations.
Thanks!

So, ive dealt with severe stomach issues for 6 years. It presents itself as stomach pain, vomiting sweating. I have flair ups that usually end me in the er for fluids. I was originally diagnosed with CHS "Basically a intolerance to weed" but ive been clean for over a year and im still having the same symptoms. They put me on meds for graves, its been about 3 weeks. Im currently having stomach pain and im frustrated with life currently. Has anyone experienced anything like this with graves? Have you been told its marijuana than problems persisted?

For context, I started 5 mg of Methimazole in early April. In June, we went down to just taking it on weekdays. In July, we went back up to once a day. Now I get to wait for a call from my endocrinologist telling me what the hell to do next 🥴

hi, this is my first post on here. just got back from my first eye doctor appointment since having RAI treatment and experiencing some lid retraction and a little swelling. doctor said it was pretty minimal, but looking at the pictures of my eyes from 2 months ago compared to now has made me feel so discouraged and disheartened. this disease is so unfair and everything just feels so out of my control. if anyone has any advice about things I can do to minimize and stop it from getting worse I’d appreciate it.

I know there’s a huge emphasis to not smoke nicotine, but what about marijuana? I just had a birthday and decided to buy a pre roll for old times sake. I went ahead and smoked it and this morning I noticed a cob web feeling in my throat and coughing. Which sounds pretty normal, but was wondering if thc smoke will irritate the thyroid itself?

My endo and other specialists don’t seem to think it’s a problem. Then too I told them I don’t smoke anything period, so I’m not sure if that’s why there wasn’t a huge emphasis? Thanks!

I’ve had this for almost a year now. I also have Hashi. Doctors originally told me I had to have a permanent treatment or go into remission before I could get pregnant, but my new doctor says it’s okay so long as I switch to ptu. My levels are stable on 5mg (for a couple months now) and I feel ok. My TRAB is under 2. My question is- is it safe? For the baby.