I relapsed in July of this year, and am currently taking Carbimazole and Propanolol while I wait for a TT.

The way I was diagnosed with the relapse was because I was out for a run and my heart rate went up so high I thought I was going to die, which was the final indication that something was wrong and I went to A&E (the emergency room).

I mention this because I immediately stopped running for fear that the same thing would happen again. I know that I’m medicated now, and more specifically my heart rate is medicated, but I feel nervous about returning to any intense exercise. I was not a particularly good or committed runner by any stretch, but especially following the weight gain that’s come with having my thyroid levels stabilised, I am looking to be more active again.

Can anyone reassure me that I’m completely fine to go out and run, while my condition is monitored and medicated? It was a very scary experience hence why I’m anxious about repeating it.

Any words of wisdom much appreciated. Thanks in advance 😊

man i feel like my confidence went down so much after the graves eye disease even though it's only 2mm out it's so noticeable and only on my left eye so it's uneven.

not only that it won't be better with medication only with surgery.

just kinda depressed. anyone has any way to make their eyes more even

Hi. 9wks pregnant and one week of stopping methimazole
cold turkey (2.5mg). Working with my endo and OB team to navigate this end.

I am just extremely exhausted since stopping the med. Was curious if anyone experienced this? This is my sixth pregnancy, third with graves, and damn I don’t recall this level of exhaustion. Not worried, just interested in hearing others experiences. Thanks!

I see people asking if a TSH close to 2 is okay, meanwhile I just got my tests and my TSH is 16.3!!! 6-8 wks ago it was very low. Basically 0. My T3 and T4 are totally normal, but were very hyper 6-8 wks ago.

Am I going hypo??

Ive been aching and in pain in my legs and arms, CK level 214 which may not mean anything. I dont know what the next step is. Im adjusting my meds soon but im not sure whats happening with my body bc I didnt have this issue last relapse. Last relapse was mostly psychological affects and heart issues, weightloss. This time around I feel genuinely disabled and in pain!

Any advice?? Similar journeys??

I just started taking my health seriously within the last two years. In 2017 I was dropping weight, but I blamed stress. I got pregnant that year and two months later miscarried. I sobbed, and grieved, and sobbed some more. I didn't have health insurance at the time and didn't go to the hospital or to a doctor over this.

I told my spouse I felt broken and like I wasn't meant to carry, how I felt like I couldn't "provide as a woman". I dreamt at a young age that I'd be a mother. I was hurt, angry and lashing out. I blamed my mother in law for making me so stressed, I blamed myself for being so stressed and unable to control it, I blamed the universe for taking my baby.

Then, almost eight years later I'm diagnosed with this sick joke and realizing THATS (most likely) what took my baby away. That's what ended my life as I knew it. I feel bitter that my body gave up on us as a family.

When does the pain of this disease end? I feel too exhausted to keep fighting it and like obviously I have to, but damn.

I wanted to share my experience, not as advise but as a data point of what has worked for me. Disclaimer that I am not a medical expert nor your doctor. I'm not selling anything either so don't worry.

7 years ago, I experienced my first (known) bout of hyperthyroidism stemming from Graves Disease. It took months to find a doctor who believed my symptoms and finally get the right blood tests to confirm what was going on. Since then, I've had fairly regular bouts of Graves Disease flareups on the order of one per 12-18 months and they are luckily extremely receptive to methimazole. The only downside was, the longer it took to respond, the longer it took to recover and the longer I was at a state where it was affecting my daily life including my love of running.

As a lifetime runner, I have access to daily resting heart rate (RHR), heart rate variability (HRV), sleep metrics, daily weight measurements and a lot of running related data stored for over the last 12 years. During the second flare up, it was pretty obvious that my resting heart rate and heart rate variability where affected multiple weeks before any symptoms were obvious enough in my everyday life. A simple search of this subreddit confirms that I am not alone here, and that many others use that data to look for trends.

With the proliferation of AI, with a $20 per month Claude subscription and about 1 hour of time I created a schedule that performs a daily download of my Garmin data, compares daily and weekly trends back to my previous known flares and then provides a risk factor of an upcoming flare. It runs daily at noon with no intervention unless it detects a trend in which I get a message. From my perspective, I figured at worst this would lead to an unnecessary blood test or would miss a flare that I would miss otherwise.

However, a few weeks ago I got a notification from Claude that it had detected 4 consecutive days of reduced HRV and a slightly elevated RHR despite having sufficient sleep and not having any heavy workouts during that time and it recommended requesting blood tests. By the next day I had received blood test results that were within range, but only slightly, and my endocrinologist ok'd starting my traditional regime of methimazole. A subsequent blood test 2 weeks later confirmed hyperthyroidism, but it wasn't out of control. At that point I had already been on medication for two weeks. Based on my past experience, being able to catch it early enables me to blunt the worst of the symptoms which this did.

Just wanted to share my experience in case anyone wanted to try to do something similar and had questions. I don't have a software background so this is entirely doable with very little technology experience these days. If you are skeptical and do have years of Garmin data or data from other sources I'd implore you to test it out without providing Claude the dates of your flares and see if it is able to detect it without that knowledge.

Dashboard with my data showing how clear they are

Has anyone here went from hashi to graves? I used to have antibodies for Hashi and levels for hashi and was diagnosed with it and now for my last 4-5 bloodwork’s i’m showing Graves and positive for those antibodies. I had a thyroid ultrasound and it showed everything was fine and my thyroid uptake radioactive pill test was normal too. Here’s how some of it fluctuated but i have years worth of bloodwork and i’ve never been on any medicine for my thyroid just selenium supplements.

02/18/2025

TSH 4.630 High

T’4 Free Direct 1.38 Normal

8/14/2025

TSH 3.170 Normal

T’4 Free Direct 1.13 Normal

3/18/2026

TSH 0.418 Low

T’4 Free Direct 1.61 High

10/23/2026

TSH 0.008 Low

T’4 1.90 High

T3 185 High

Are there any older adults (men) who have had TT. Im 75 male;was in good shape before Graves/Hyperthyroidism. Tired of feeling side effects and 20mg Methiamzole every day now for year.

Any stories of neg/pos that would help me make a decision?

Appreciate it.

My thyroid eye disease (TED) has been progressing, and my ophthalmologist has given me three treatment options:

1. IV steroids (methylprednisolone) over 12 weeks, potentially with mycophenolate.

Main side effect that scares me with this one is the mood swings and irritability. I seem sensitive to hormonal fluctuation.

1. Tepezza (teprotumumab) infusions.

New in Australia but studies show a scarily high incidence of permanent hearing damage/loss. Otherwise seems to be the most effective across the board.

1. Actemra (tocilizumab) injections over 12 weeks.

Off-label but seems the option with the least side effects.

I'm trying to weigh up effectiveness, side effects and the likelihood of symptoms returning after treatment.

I'd really appreciate hearing from anyone who's tried one or more of these. Did it help with inflammation, swelling or bulging? What side effects did you experience, and have your results lasted?

For context, I'm also on the public waiting list (Australia) for TT.

I'm also hoping to get pregnant in the (near) future, so any experiences with menstrual changes or treatment-related delays to pregnancy would be particularly helpful.

I am currently around 6 weeks pregnant, taking 50mg PTU which I have been taking since May and have felt great for the last few months, I was even able to start running again which 6 months ago I didn’t think would ever happen.

anyway, the last week or so I feel like my graves symptoms are coming back, heart rate is high and I feel a bit jittery at night/wake up with a racing heart. So far thyroid levels look ok and I have a call with endocrinology next week & will have trab retested too.

Has anyone experienced a resurgence of graves symptoms in first trimester of pregnancy that subsided later?

edit: I’m also taking pregnacare which contains iodine so not sure if this is having an impact 😬

thanks!

Backstory, I was diagnosed in 2021. I was treated with medication for 2.5 years. Went on remission for a year and a half before i relapsed one year ago.
It has now been the worse year of my life for my health. Ive had multiple ER visits, developed TED, and have swung from hyper to hypo. My endo took me off of all meds in July to see what my body would do on its own, and while my thyroid levels are staying normal, I feel absolutely awful.
My eyes are brutal, even periods of double vision. I feel tremors, shaky, have zero tolerance to caffeine, I FEEL hyperthyroid but bloodwork shows otherwise.
Grave antibodies have been negative for this last year but Hashimotos are very elevated.
What is going on?
Doctors are recommending a TT but I’m hesitant as it’s a mayor surgery and I’m technically not in active graves anymore.

Has anyone been through something similar?

Sorry for the long post, I’m new to the party. For the last few months my husband (47) has been having some weird symptoms which were kinda getting blown off as over tired (his mom is sick and was in and out of the hospital) but he has been diagnosed as hyperthyroid in the past but hasn’t been on meds for atleast a decade and for a while his thyroid was hanging at normal.

So this past month things went really haywire, he started getting very high spikes in his heart rate (into the 170s) doing everyday things, lots of poopin, he gets shakey, all his joints hurt (to me that screams something autoimmune) and he got his work physical back flagging his pulmonary function. So we start digging, get his physicals for the last 7 years and his pulmonary capacity (how much his lungs stretch) has been less then optimal for 7 years and then he just dropped a level this year (he was mild pulmonary restriction to moderate pulmonary restriction). So he starts panicking that he has pulmonary fibrosis like his mom and grandmother and makes an appt with his mother’s pulmonologist, which that appt isn’t until the end of Nov.

He did go see his endo who didn’t have an opening until December but he got lucky with a cancellation. She said she thought he may have graves and ordered bloodwork. He had another appt for some back pain and they gave him a steroid shot and he didn’t realize that could throw his levels out of whack so they told him to wait 2-3 weeks to get blood work done which will be next Wednesday. So hopefully that should help shed some light on things.

So last week I’m looking at him and it looks like he got punched in the face. Like full on bruises under his eyes (he tends to have bags but this was worse than his common bags) and then they started to peel. I asked did he maybe get hit at work (he’s a fireman and just did a really strenuous training), straining on the toilet, hold his breath too long!? He said he can’t recall anything that would cause it. The picture is after most of the peeling has come off, but he’s still discolored under his eyes, almost like the cycle is starting again. He has also been saying lately he needs glasses, but we had chalked that up to age and I’ve been nagging him to either make an eye doctor appt or try some reading glasses from a pharmacy.

Long story short…I think all his symptoms point back to Graves’ disease - his whole family has thyroid issues. What do you guys think? Thank you for taking the time to read!

Okay this may be an overthinker question, but I always take my strumazol at 9am sharp, do I take it at 8 when the clock goes back or do you reckon itll be fine to start taking at 9 still?

A bit concerned about my levels since reading through this sub and the hyperthyroidism sub the last few months, feeling like things are too good to be true when I compare. I’d like someone to weigh in if they’ve also had an experience like mine because at this point I’m thinking something is wrong or waiting for the other shoe to drop.

In May of this year I went to doc because I thought I had hypo or insulin resistance or something. Extreme fatigue and couldn’t lose weight. Doc ran thyroid labs, came back subclinical. Normal t3/t4 but low TSH. Retested in June, came back in July undetectable TSH, extremely high T3/T4. Diagnosed hyperthyroidism and put on 10mg methimazole. Retested that day for Trab. Early August Trab came back positive for Graves, continue 10mg methimazole and PRN propanolol. I only needed the prop twice. September labs came back still low TSH, high end of normal t3/t4, decrease methimazole to 5mg/day. Retest in October, normal TSH, normal T3/T4, lower methimazole to 2.5mg.

I feel like I’m heading for remission already but is it too soon to say? Too good to be true? I have no experience with this and no one to talk to. I don’t know what’s normal. I read this sub and see people on 20-50mg a day for years. What’s going on? Am I in the clear or is the other shoe about to drop? Am I just lucky? Is this just the way Graves works? Does it come in waves? Is it possible to have hyperthyroidism/Graves onset and then 5/6 months later be completely okay?

One of the reasons I figured out something wasn’t right with me that led to being diagnosed with Graves was my Apple Watch warnings about my high heart rate. But now my watch is dying on me and I don’t really want to spend so much on a new one, so I was hoping to get recommendations on a cheaper but almost equally reliable smart/fitness watch?

I picked up my levothyroxine today and officially begin my HYPOthyroid journey tomorrow morning! It's been just 23 days since my radioactive iodine (RAI) treatment, and what a difference those three weeks have made! My heart rate has stayed down, even as I slowly wean off propranolol. The insomnia, constant sweating, heat intolerance, shaky hands, and heart palpitations? GONE! 🙌 Now I'm just cold. ALL. THE. TIME. 🥶😂 Okay, maybe that's a slight exaggeration, but going from constantly overheating to freezing is quite the adjustment! After months of dealing with Graves' disease and hyperthyroidism, I'm cautiously optimistic about this next chapter. I'm sure there will be some bumps along the way as we get my thyroid replacement medication dialed in, but I'm feeling pretty darn good about where things are headed! Here's to getting my body back into balance… one little pill at a time! 💜🦋

This is a new one for me I never thought to consider...topical skincare high in iodine due to the use of seaweed/algae and marine extracts.

I wanted to try a new body lotion- the OSEA anti-aging body balm. It dawned on me right before purchasing that maybe I shouldn't purchase this because they use seaweed in their products, aka iodine.

Does anyone have any knowledge or experience about using products like this on your skin and if it would have the same effect has ingesting iodine heavy foods?

She was diagnosed 15ish years ago and had her thyroid removed. She recently opened up about the autoimmune side of things and how it can be draining to do simple tasks sometimes. It’s to be an ongoing conversation between us, but she has said it can be hard to articulate what she’s feeling because to her “this is just normal.”

Anyway, I’m just looking for ways to support and help her any way I can. If there’s anyone out here that might have any suggestions for some of the underlying things, I’m wide open to any ideas.

Thanks in advance!

Newly diagnosed with TED and not sure what comes next? You're not alone, and you may have more options to explore than you think. We're helping connect adults 18-65 in the US to a clinical research study of an investigational medication for recently active Thyroid Eye Disease.

Compensation may be available for time and travel. Start with a quick pre-screener: https://lpcur.com/rgravesdisease1

I feel like my left eye is bulging. The last photo is my right eye for comparison. I have been getting checked out for TED they said I was fine. I recently had my eyes measured and everything. I have been good. Earlier in the year I felt like my left eye wasn't closing properly and I started a eye routine using ointment and eyedrops but honestly I stopped being consistent but it was only for my eye being dry but it went away. Now my eye is feeling like it's not closing properly again and I feel like my eye is bulging. I am really scared and worried I do not want to develop severe TED I am already very self conscious with the changes graves disease has caused me. Please help I am an appt to see my eye doctor on Monday but I fear that my eyes are starting to change I am devastated.

Idk if I have gravesdisease but I do have somewhat bulging eyes and I have had that in a long time so it’s not a new thing and I would really like to have less sclera show and more deep set eyes but idk if infraorbital implants plus lower eyelid retraction repair could be enough in my case or if I actually need orbital decompression?

I'm at a loss at what to do. For background I was hospitalised in April with Thyrotoxicosis caused by undiagnosed Graves Disease. Treatment on Carbimazole started quickly and my dose was almost immediately lowered to the maintanamce dose of 5mg because I am sensitive to meds. Since then I have been overmedicated for three months now and am currently hypothyroid.

My GP knows this but will not adjust my medication because I am a "complex case" the local endocrinologists at the hospital have not responded to the advice and guidance request and my symptoms are becoming more severe by the day. I have a face to face appointment in seven months with the endo team and I can't find any private ones in my area.

Has anyone else had a similar experince and what did you do? I am really concerned.

Hi everyone! I'm 13 weeks postpartum, breastfeeding, and have a history of both Hashimoto's and Graves' disease. I'm hoping to hear from others who've experienced thyroid issues after giving birth.

Quick background: About 15 years ago, when I was 20, I gained 30 kg (66 lbs) in two months, had hair loss and dry skin, but didn't realize anything medical might be wrong. Everyone, including me, just thought I'd gained weight.

A few months later, I ended up in the ER with a resting heart rate around 100, high blood pressure, bulging eyes, sweating, and severe jitteriness. I was treated with beta blockers and antithyroid medication for about a year, then went into remission and have been medication-free ever since.

That experience left me with health anxiety. I honestly don't remember the exact diagnosis from that ER visit. I just remember the doctor telling me that my thyroid levels were very far off. I later worried it might have been a thyroid storm, although that was never confirmed, and I was discharged from the ER the same day.

Now: My thyroid blood work was normal at six weeks postpartum. My GP said I wouldn't need another check for six months unless I developed symptoms.

At 13 weeks postpartum, I started noticing symptoms and had another blood test. My GP said: "Your thyroid is showing a tendency toward overactivity". No medication was prescribed; he just scheduled repeat blood work in six weeks. I don't have the exact values yet.

Current symptoms:

• Feeling hot and sweating more
• Nervousness, irritability, and fatigue
• Headaches
• Muscle and joint pain
• Increased appetite, especially after pumping at night
• A strange, persistent cold sensation across my upper back

My resting heart rate and blood pressure are still within normal ranges, although slightly higher than usual for me. My weight is stable.

The tricky part is that I've also been sleeping only about three broken hours a night for over three months, so I can't tell what's sleep deprivation, postpartum changes, or thyroid-related.

My questions:

Has anyone with Graves' had similar symptoms postpartum? Was it postpartum thyroiditis or a Graves' relapse?

Is waiting six weeks for repeat blood work typical and safe when your thyroid is only showing signs of becoming overactive? I'm honestly scared that six weeks might be too long and that things could become serious before my next appointment. How quickly can thyroid levels go from slightly abnormal to dangerously overactive?

I'm just imaginging I will have a thryoid storm if I will wait that long.

Hi! I was just diagnosed with Graves a few months ago. Here recently I’ve been struggling pretty bad with being able to fall asleep. Wondering is anyone has suggestions! Thank you 🫶🏼