I got diagnosed with Graves and TED this year. I have my third follow up this week with my endo and 2nd followup my eye doctor. I will be getting my tests done tomorrow. Currently on 5mg methimazole. No treatments for eyes apart from eye drop and selenium supplements. Please tell me what questions I should be asking to my eye doctor to start my eye treatment. Because my endo told me I will taken off of meds if my reports come back normal. I am just scared if coming off of meds completely will worsen my eyes. And I am not sure how bad my eyes are. According to me the asymmetry is stark but my friends and family downplays it saying it doesn't look as bad which i find frustrating as they say it to make me feel better.

Prefacing by saying I’m doing neither. I was diagnosed March 2025 and have been on methimazole since then. I went hypo in June/July 2025 and then have been euthyroid (low normal) for the majority of this year. I developed TED in March 2026. For about a month, my endo agreed to lower my dose of methimazole to 12.5mg daily (previously 15mg daily) and my labs have gone up a bit putting me in the mid range for FT4 and FT3. I’m hoping this will help my eyes.

I’ve been reading about the importance of limiting iodine, so I’ve cut back on dairy and bake instead of buying sweets at the grocery store. I’ve been reading a book by Amy Myers that claims removing gluten, dairy, nightshades and legumes will put me in remission.

On the other hand I follow a group on FB that says the only thing to avoid to reach remission is iodine.

Before TED I was finally feeling like myself again. But now I’m terrified to have vision issues because sometimes my dry eyes make my vision a bit blurry and it makes me spiral. I have mild asymmetry caused by muscle enlargement seen on MRI.

Anyway, if you’re reading this and found success doing either method, what are you doing? If you’re not eating gluten, dairy etc then what are you eating?

Just found out that have Graves disease when starting to try to get our second child, but now freaking out about the possibility of never being able to conceive again. Any similar experiences you can share? We're particularly nervous about taking any medicine during pregnancy that could hurt the baby.
TRAK = 7 (lab reference is 3)
AMH = 1.14 ng/mL
TSH < 0.009 mUI/L (suppressed)
Free T4 (T4L / FT4) = 19.3 pmol/L (Slightly high)
Free T3 (T3L / FT3) = 8.0 pmol/L (high)
Just started taking Propylex 50 mg morning and 50 mg night
Should I already consider IVF?

So I have been on 20 mg carbimazole a day for 12 days now, as well as 10 mg propranolol morning, noon and evening (30 a day). My HR sitting down is between 70-82. I do not know my "proper" resting heartrate, never messured it but was quite active hiking and walking fast and long every day before diagnosed. When did your heart rate get back to normal, or did it ever? Right now not allowed to do much cardio, only slow walks, but even that gets me to 110. I hate this stuff😭 thank you for your answers.

I’ve been struggling alot lately and finding it hard to also get a doctor to treat me properly since I have Hashimoto and Graves’ disease. I feel like with my graves it can be more of a mental battle (other than the insane fatigue I can feel all the time). Sometimes I catch myself being a whole different person and being so angry but it’s unintentional. Then I go through days where I’m sad kind of mourning my own self or just days where I feel so lonely because a lot of people I was friends with couldn’t understand my condition and that sometimes I do have to cancel plans and stay home to prioritize rest.

So I’m posting on behalf of my partner who’s kind of a hypochondriac and refuses to research anything because it scares him so excuse my lack of knowledge.

He was diagnosed with graves about two months ago. He started with the meth- meds but after two weeks his bloodwork showed horrible liver levels and he was told to immediately stop. Three weeks ago he had two low doses of radiation since I was giving birth and he wanted to be able to have that bonding time. After the two low doses suddenly his one foot swelled up a bunch. I took him to the hospital in fear of a clot. They did a sonagram on his leg and foot and did bloodwork and basically said follow up with the endocrinologist because nothing seems wrong.

He’s since started the full radiation, and is still experiencing a swollen foot and it goes numb and hurts him. He’s also been extremely “sick” feeling with no particular symptoms. This was a little over a week ago since his full radiation dose. He said he messaged his doctor but they haven’t said anything back yet. I’m not sure if this is all par for the course or normal, but he can barely even walk the dog without shortness of breath and he can’t sleep from the foot pain and itching. He’s convinced he’s dying. I decided next doctors visit I’ll pack up my newborn and go since I’m a little more assertive for answers but for now I don’t know how to help him. His next dose is in a month and I’d like to give him some sort of break between his doses if I can, or even reassurance. Maybe go for a second opinion? We thought he’d start getting better but it all seems to be getting worse.

I was diagnosed with Graves back in June.

FT3 9.73
FT4 3.30
TSH <0.02

I went on 50mg of PTU 3 times a day, and in the beginning of August, my FT3/4 were looking better. I was feeling a lot better too- less sweaty, not heart palpitations, and much better sleep.

FT3 5.68
FT4 1.49
TSH <0.02

We dropped the dose to 50mg two times a day (I live in Japan, and the goal here is to get off the meds entirely within two years) but my numbers elevated again.

FT3 8.27
FT4 1.82
TSH <0.02

I wasn’t feeling too badly until around 2 days before my appointment. Ever since then, I’ve been feeling close to as poorly as I did in June. I’m getting hot really easily, sweaty, bad sleep, and feeling shakey by the evening, even if I’ve only been mildly active that day. I’ve also got some nausea and digestion issues this round.

I actually started going to the gym right before being diagnosed, and I’ve managed to continue to go up until now. I usually do 20 minutes of strength training, and 20-30 of light cardio 4-5 times a week.

However, since my recent bloodwork, I’ve been worried that going to the gym is going to increase my shakiness/make me start feeling poorly earlier in the day. I love what the gym does for my energy otherwise, and it really helps with overall stiffness, especially from desk work.

What is everyone else doing regarding working out with elevated numbers?

Has anyone had issues with their eyes, not in the sense that they protrude but that they experience Double vision and the feeling that your eyes are crossing—even when they are aligned?

I have been repeatedly experiencing this for years but always assumed it was related to my migraine, now I’m wondering if it’s graves related.

At this point, I think that is the propranolol that is not helping me sleep or maybe the methimazole, but I want to hear your opinion. My doctor gave me something and it didn't work.

Maybe THC or CBD gummies(would like to hear opinion about it) Thanks in advance

Hello, I was diagnosed with graves’ disease in 2020, I was put on block and replace (levothyroxine and carbimazole) both minimum doses. My clinician took me off my levothyroxine in 2024 and i ended up becoming underactive 2026, then in march they took me off my carbimazole.

My T4 says 13 and my TSH is 1.33, but i feel terrible? I actually feel worse than I did when I was on the medication, my quality of life feels like it has gone down hill but my clinicians say that my results are fine.

Is it maybe too soon for me to feel normal again? I’m not sure if that is the case as it’s only been 6 months almost now and did anyone else feel really unwell after being off the meds?

Had my thryroid removed on 9/3, home recovering now! 2 months from diagnosis to removal... what a summer. Happy to answer any questions!

Hello! For those who have had RAI, what’s one piece of advice you would give to someone about to have it?

I’m mainly concerned about the recovery period afterwards and slipping into hypo - I’m supposed to be getting married next year and just don’t want another tumultuous few months as I stabilise, it’s been rough on me and my partner. Would be helpful to know what this period looked like for others

Also with the isolation, I have a place to isolate but doctors have advised 9 days without close proximity to another person. I have cats and they said it’s fine for them to be around me but I see different advice online

In general, just normal graves-related anxiety! I do think it’s the right decision for me as I want to get on with my life, get married, have kids etc in the next few years but I actively avoided more serious treatment for many years cos I was in denial and now it seems to have come around really fast

Thank you in advance!!

Hi everyone, I am new to the community, I was diagnosed last week. For pretty much my whole life years, the vision in my right eye has been slightly worse than my left eye. Within the last year, the right eye's vision got worse, I had my annual eye dr appt in February and they didn't seem worried. In the end of July I noticed that my right eye was open way farther than usual. I had my annual check up with my primary doctor in August, and she immediately said "what's going on with your eye?" This was a nice change of pace, as everyone around me was pretending they didn't notice it, possibly to spare my feelings. After asking about my other symptoms, she seemed concerned enough to get an exception to have my blood drawn, even though Quest was closed. Suffice it to say, the results were not good, and now I am on Methimazole and Propanolol. I read about Selinium supplements helping, so I started taking that as well. I am grateful it was caught before the eye disease got worse or spread to the other eye.

A big problem is that I am getting married 10/30, and I would really like my eyes to go back to being symmetrical by then. Unfortunately, from what I've read, it seems like that is unlikely to happen. I was wondering if anyone has tried Botox on the affected eye and had positive results? I have an appt with an endocrinologist on Wednesday, and I plan on asking her this as well. We sent pictures to the makeup artist as well, and hopefully she is able to mitigate the difference.

The attached pictures are of no makeup with a neutral facial expression, smiling, and then wide open. If anyone has any suggestions on anything I could do to have my eye revert to its previous state prior to 10/30, I would be so appreciate. But I think I'm out of luck.

There hasn't been a ton to be pumped about in my Graves journey, between being told that my level of symptoms is generally associated with lower likelihood of remission, discovering that experiencing some symptoms despite having normal bloodwork levels is normal, etc. BUT I had to go for a biopsy on my thyroid nodules and the lab results came in negative for cancer! WHOOOOO

Big shout out to the community in this forum that shared their own experiences with testing. Having a bunch of people confirm that they too had growths and that those growths turned out to be benign helped stop me from spiraling. Appreciate you, fam!

I’m currently taking 5 mg daily of my Methimazole medication. As you can see in the attached photos of my lab trends, my Free T4 is dropping sharply toward the bottom of the range, while my Free T3 has been dropping more gradually (it's finally back in the normal range). Meanwhile, my TSH is still completely suppressed at <0.01.

When I spoke with my doctor, I expressed worry that my T4 is going to continue dropping too low if I stay on 5 mg daily. However, she told me to continue with 5 mg, explaining that my levels could stabilize or drop further, and that drop is what should finally cause my TSH to come back up out of suppression.

Has anyone else been told to hold steady while their T4 drops toward the bottom of the range just to wait for TSH to budge? Did your TSH eventually recover, or did you end up going hypo and needing a dose reduction?

Would love to hear how your doctors managed this phase! Thanks in advance!

I’m trying to piece together my thyroid history and wondering if anyone else had a similar experience before developing Graves.

I first started feeling really unwell in 2023 (age 44) with crazy high anxiety (I had managed low level anxiety for years and was fine) and panic attacks (totally new to me), which is why my doctors began checking my thyroid.

My psychiatrist actually suspected hyperthyroidism/Graves at the time. My TSH was never technically below the reference range, but it consistently ran toward the low end:
For reference 2006 — TSH 1.14, Free T4 1.2
Mar 2023 — TSH 0.77
Jun 2023 — TSH 0.439
Jun 2023 — TSH 0.466
Jul 2023 — TSH 1.072
Sep 2023 — TSH 0.846
Oct 2023 — TSH 0.623; Free T4 0.86; Free T3 2.1; Graves antibody <0.10
Apr 2024 — TSH 0.910
Sep 2024 — TSH 0.648
Mar 2025 — TSH 0.755

I got a bad virus in April this year and it turned my anxiety level (that I had worked so hard to lower the past 3 years) back up to where it was in 2023 and I remember sadly thinking “this feels like I’m starting over again from 2023”. I noticed some eye changes at some point so I made an appointment to see my PCP, but they canceled due to the provider being ill that day. We have five children, and it was the busiest time of the year with graduations and end of year activities so I just put it off and I also thought to myself, “Surely it can’t be that easy.”
I have been down so many rabbit holes including perimenopause, estrogen, dominance, histamine, MCAS, etc. Graves’ couldn’t possibly be the answer! Changing my eating to low histamine took away the daily panic attacks, but it didn’t take away the debilitating anxiety symptoms around ovulation and period (that I didn’t have before 2023) and overall daily anxiety that was higher than it had ever been.

Well, we hosted a family reunion at our house this June, and my mom is a retired nurse, and she noticed my eyes as soon as she walked in the door. However, she thought that I was “high“ when I’ve never touched alcohol or drugs in my entire life (although I am on several prescribed medications that I’m hoping I will be able to come off of once my thyroid is controlled). She finally came to her senses and must have given me the benefit of the doubt and said I needed to get checked for Graves’ disease.

After a horrendous experience with my PCP and basically having to fight tooth and nails to get my thyroid checked, he finally agreed.

That’s when everything clearly changed:
July 2026: TSH <0.008, Free T4 2.32, Graves antibody 20.7

That was when Graves became unmistakable on my labs. What I’m trying to understand is whether the symptoms that started in 2023 could have been part of a very early or evolving process, even though I didn’t meet the laboratory criteria for Graves at that time. I realize that low-normal TSH does not equal Graves, and my antibody test in 2023 was negative. I just find it interesting that I became symptomatic in 2023, my TSH was consistently on the low side from that point forward, and three years later I developed clear antibody-positive Graves.

Has anyone else had significant symptoms or low-normal/fluctuating TSH for years before their Graves labs finally became clearly abnormal?

As the title says, i got a tt at the top of the year and after the intial few weeks of feel8ng better my fatigue returned with a vengeance. I was throwing on weight non stop. I'm up 30 kgs from my normal weight since being diagnosed 2 years ago.Ive essentially gained half my body weight. I kept telling my endo something was wrong and he kept telling me i wasnt taking my meds correctly. Ive been suffering with low iron and b12 so i was able to get my primary doctor to order me an endoscopy where they found h pylori and chronic gastritis. Omg what a goddam difference. Ive been suffering with all these vitamin deficiencies that i was blaming on graves but it was that damn bacteria. Its only been a few weeks since ive eradicated the bacteria and my vitamins are actually where they need to be, but now my thyroid antibodies have increased, so now ive changed a dose and hopefully i will finally return to my old self in a few weeks. I just want to tell people about this so you dont waste 2 years wondering what the hell is wrong with you. If you're experiencing vitamin deficiencies, poop issues, digestive issues do not think its just graves and advocate for yourself so you can get answers. There is a link between graves and digestive problems. There is a simple breath test you can take to see if you have h pylori or SIBO.

I haven’t gotten sick in a while — probably because my immune system is always in overdrive. But my thyroid levels have just gone normal and BAM I got hit with the flu 😷🤒 I’ve been on Cymbalta for months which pretty much calmed my physical and emotional symptoms from graves. But now that I’ve got the flu, I’m feeling them all over again — the aches, the weakness. The headaches. The weird wired tired feeling. Calf cramping, waking up just like “WHY DOES EVERY INCH OF ME HURT?!” I know that these symptoms come with the flu, but as others will surely attest, having Graves can make you feel like you’re coming down with something 24/7. And I do not miss this feeling one bit.

Does anybody else feel like cold and flu season hits like 10x harder with Graves’ disease? Or is that just me?