r/gravesdisease

Has anyone here continued doing really hard cardio training with Graves’ disease — like triathlon training, intense cycling, endurance work, etc.? I’d love to know how you manage it and whether you still get symptoms even when your levels are technically “under control.”

I’m currently on 5mg Carbimazole (UK) and my endocrinologist has said my antibodies are now quite low, to the point where I could potentially trial coming off the medication. But honestly, I don’t really want to risk becoming hyperthyroid again because I’ve finally started feeling good and stable.

Lately I’ve been doing really intense Wattbike classes as my main form of exercise and I think I got a bit addicted to the cardio high. I did three back-to-back days of really hard training without giving myself any proper recovery, and now I’ve gone down like a ton of bricks for the last couple of days.

I’m not hyperthyroid at the moment, so I’m trying to work out whether this is just straightforward overtraining or whether Graves makes recovery and stress tolerance a bit different, even when your levels look controlled. Would love to hear from anyone else doing intense endurance/cardio training with Graves.

I was diagnosed a week ago, 12 days after the first symptoms. I see the ophthalmologist to check for TED tomorrow. If I don’t have TED, or have it mildly, I asking for RAI if my liver enzymes are still up on my next tests in the 29th of May. I have a history of severe liver issues adding to F around on methimazole for years.

Other women who have been on methimazole for years then decided to get TT, what is worse. The methimazole or the hormones? I was off meth for about 5 months and was finally starting to feel like a normal person again. More energy, clear thinking, less body pain ... after only being back on meth at a very small dose, I feel hopeless. I honestly cannot picture living the rest of my life like this.

So, is it a better quality of life after TT or do I just roll over and accept that feeling miserable is just my normal now?

I am SO excited!!!! I plan to get some scar tape. Any other products you’d recommend freshly post op or in the following weeks/months??

I’ll be off work for 2 weeks. I have a 7 month old and she’ll go to daycare full time for the first week and maybe the second week. My husband is self employed and planning to be on standby during those two weeks. He won’t actually go back to work until the Tuesday after surgery. My parents will be flying into town Friday night to take care of my baby Friday and Saturday night and all day Saturday. I do breastfeed and the plan for night feeds is to have my husband get up and bring me the baby, I’ll feed her, then he’ll put her back to bed. I have a solid freezer stash for Friday and Saturday. Any other life/routine change tips?? TIA!!

I just need to get this one off my chest to a group that probably at least knows where I’m coming from!!

I started treatment in January (methimazole 20mg 1x daily) and I felt so, SO good once I started to move from hyper- to hypo-. The anxiety was almost completely gone, I was less irritable, I could sleep, I was able to go to the gym and actually see progress in how much I was lifting and distances done (on treadmill/elliptical/cycle), I could walk up the stairs without being out of breath, my resting heart rate would go below 100 bpm (then 90, then 80, all the way to below 60!), my brain fog was gone, and I felt like I was making incredible progress on tasks at work. I genuinely told people that it felt like I was manic because of just how happy and relaxed and positive I felt after the first few weeks of treatment.

But then I swung into hypo- territory (~27 ulu/mL) and man did the depression hit me HARD. I struggle to get out of bed in the morning, it’s hard to feel excited for doing anything, to have energy to perform basic tasks, and the brain fog is back and strong as ever. My doctor pulled back my dose to 10 mg and it looked like my levels were dropping back towards normal range (was at ~7 ulu/mL). Just did more blood work and I’m back up again to ~11 ulu/mL and just want so badly to be back in the good range (doctor dropped my dose again so hopefully this will be soon).

I just feel like it’s hard to put into words how draining it is to go from one extreme to the other and all the impacts on your mental health. It’s not really discussed how quickly the symptoms set in during this trial and error period of getting medication dosage correct. I have previously been diagnosed with depression and anxiety, so I’m very in tune with what it feels like in my body and mind, and how to cope with them, but it just sucks being stuck with these mental health impacts during the interim. I’m looking forward to getting my dosage correct and wouldn’t change anything about having been diagnosed/getting help.

My new endocrinologist mentioned it to me when I saw him in March, mainly just saying he’s open to it if I’d like to try it. My insurance doesn’t cover any of those things so I’d be relying on the manufacturer offers, and the pill is cheaper than the shots. Not to mention if I had to choose, I’d rather do a pill. I take enough pills that it doesn’t really matter if I add another one to the mix.

Aside from it helping with weight loss, I’ve been curious about what Wegovy in general has done for inflammation with people with graves (and even other autoimmune conditions). My endo said he’s seen it make a significant impact in that way.

My friend just got the pill so I’m going to see how she does with it. Ironically I take Vyvanse for my adhd, and while it kind of helps with the “food noise” - aka I lose interest in eating during the day to the point that I’ll get a headache because I’m physically still feeling super hungry - it does nothing for the actual hunger itself. I’ve been trying to just have a protein shake at work so I don’t get to that point, but then in the evening I’m back to wanting to eat whatever.

Unfortunately I was not able to hang onto any of the weight loss I had while hyper for 6 months, but a chunk of that definitely was muscle loss so not the right weight to be losing. My butt looked concave at one point 😩

Any feedback is appreciated!

Hi all.

I got my diagnosis just last week after years of gaslighting myself. I’m still processing it all. This gave me an idea to reach out.

What is something you wish you knew when you got diagnosed with Grave’s Disease?

Thank you!

I generaly eat healthy (low carb diet) and occasionally (once or twice per month) I would have a dinner as a cheat meal. I have been going to gym for almost 14 years. I never had issues before, but in January, after each cheat meal I had increased heart rate, night sweating and insomnia. It resolved always the next day and it went back to normal. In march, the same thing happened again, but this time the issues did not resolve and it has been like this for almost 2 months now:
- My resting heart rate rose from 60 to 75/80,
- I started losing muscle mass, although my weight stayed the same
- I had severe insomnia, which luckily resolved in about 3 weeks
- I experience anxiety
- I sweat more and I have some heat intolerance

During these 2 months I did countless examinations. Thyroid ultrasound was clear, antibodies not elevated, hormones and TSH withing range.
TSH: 1,56; fT4: 14,28; fT3: 4,52; anti Tg: 1,18; anti TPO: 0,39 (24. 10. 2024)
-----up to this point, I had no symptoms------
TSH: 0,804; fT4: 14,83; fT3: 3,75 (30. 3. 2026)
TSI: <0.1 (<0.5) (20.4.2026)
TSH: 1,3; fT4: 14.27, fT3: 4.87   (20.4. 2026)...TSh actually started going up
----I plan to do another thyroid panel soon----

So after two months, my symptoms are:
- gradual muscle loss, even though my weight is staying the same, but I see that muscles are slowly fading. I also notice regeneration after workouts is not good. I have some DOMS almost after each workout. My strenght also dropped a bit.
- still increased resting HR (around 75-80)
- anxiety
- occasioanl fatigue and tiredness
- wierd metabolism
- last few days also frequent need to urinate

All the doctors I have been to say this is all probably just stress, but I am not really convinced. So I have no medicine or support, basically nothing to help myself and no guidelines.

Any advice would be appreciated

My Graves disease came out of remission after 20 years unmedicated, so I didn't have an endocrinologist anymore.

Where I live (US), it's a 4 month wait just for telehealth. I had to beg my primary to put me on meds, but I'll have no idea if it's the right dose until my appointment in July (that I scheduled in March).

I got a referral to another place that might be able to see me but after 2 weeks of calling every day, they haven't received the referral (my provider sent it twice). I'm giving up on that one since at this point they will schedule me after my July appointment anyway.

I keep asking myself, do people just die waiting to be seen? Do they end up in the ER? This doesn't seem right.

I am 6 months out from having my thyroid removed, and I've started having heart palpitations again. My thyroid levels are normal, and my endocrinologist just dismissed the symptoms, told me to go see my PCP.

Could it be possible that my levels are in the normal range, but too high for my body's 'preference'?

I was diagnosed with Graves after the birth of my first child. I found out pretty late because all the symtoms I had, I tought were related to postpartum. At the time my free t4 was 1.96, my TSH was 0.005 and TRAB was 11. I took methimazole for about 18 months and went into remission. Then I got pregnant and during pregnancy everything was fine up until I gave birth. Remission lasted for about 3 yrs. On Jan 2026 I started having symtoms again and got checked. My free t4 was 4.13 and TSH 0.008. I was put on 60mg methimazole for 6 weeks and lowered doses eventually (60–>40–>30–>20–>10 and now 7.5 a day.) all those changes happened within 4 months. By the third month of my diagnosis I went hypo and have been hypo since, even in 10mg a day. I have labs next week to see if the 7.5 mg is enough to pull me out of hypo. But my question is… is it possible if I have no more babies and take methimazole for a couple years for me to reach life long remission? I see ppl saying they have been in remission for 20-30 yrs. But I’m not sure if I should have hope. I’m done having kids so I’m hoping the pp period is my only trigger.

I’ve been on carbimazole for 6 weeks (5 weeks when my bloods were taken last week)

My tsh, t3 and t4 have improved slightly (yay!) but my tRAB is still increasing, is this normal?

My consultant didn’t seem concerned ( I was Diagnosed with graves Friday just gone) and has just said to continue with meds as normal and I will have another blood test in 6 - 8 weeks.

Just wondering if anyone else has had a similar experience?

Bloods

Pre meds
T3 8.7
T4 43.40
TSH 0.005
tRAB 2.6

Bloods 15/05 (5 weeks on meds)
T3 4.1
T4 15.7
TSH 0.008
tRAB 4.53

Hey guys, it's me again . I just got recently diagnosed with graves disease a couple months back and it was investigated after complaining of many symptoms over many years but mostly heart skipping. I have always had them for most of my life but they went away when I was younger. They become pretty bad about two years back but they were still here and there not consistent one after another. Now, recently...they come as hard thumps that feel so large that it's almost like I can feel my heart twitch in my chest, I don't know if that is the case but it's so uncomfortable and it always catches me off guard and takes my breath away and causes great anxiety. They come in a series of almost rhythmic or maybe out of rhythm its so hard to tell. Sometimes they will last for an hour, sometimes less. Is this normal with graves? Or is this something worse? I have been to many cardiologists and they all tell me it's because I need a more active lifestyle or of course anxiety. But this is way worse than it was before and it terrifies me. They come randomly but I've had them almost every day.

I’m not sure if I didn’t do enough research or what but I had no heads up that I’d be dealing with what I’m dealing with.

Long story short, was on PTU, 200mg daily.

Elevated liver tests and t3&t4 going lower end of normal, tsh still <0 , started not tolerating meds mentally and having panic / insomnia.

I email endo to beg she cut my dose, she cut dose to 100mg and gave some blood tests to do in a few weeks. No further communication

I have no idea how to cope with the adrenaline surges, panic, fear, doom, insomnia what ever the hell just happened and now seems to be the reg ?

Do we get on medication for this? Is that not my endos responsibility? Or do I go to a gp?
Does it stabilise? Seems really weird to be suffering in silence. I was taking drowsy antihistamines to try to sleep but it’s not working

Basically what did you do? What is normal procedure in this situation?
Did TT or RAI stop this?
I’m just shocked that something so debilitating wouldn’t come with a huge warning sign or that treatment wouldn’t be more gentle/slow

This is my second post today but posting anyway. My Graves disease was onset around puberty when I was a kid. I remember being in middle school and my hands were so shaky, I couldn't open my locker. That was when I started seeing an endocrinologist and taking meds. I can't remember how long it took, but by highschool I was off meds and fully in remission. I had a very short relapse of symptoms around age 20 where I was briefly re-medicated. Then I was in remission for 20 years until now at age 40.

My endocrinologist from way back then always told me my Graves would come back if I got pregnant, but that was not the case for me. It didn't come back until my youngest child was over 4 years old.

Anyone else back after a crazy long remission? Were you able to get regulated with medication?

Hello all.

New to this sub, not new to Graves. Really emotional and frustrated. Was diagnosed in 2024, and after finally getting regulated with my endo, was able to become euthyroid after about 4 months of treatment. Been on methimazole since, and we've been slowly down-titrating to hopefully achieve remission. Was told I would likely be in remission come this July.

Just did labs a month ago, and saw my TSH was falling and T4 slowly rising. T4 still normal. TSH slightly below the normal low cutoff. Today I did repeat labs, and although my T4 rose (still within normal ranges), my TSH has now fallen lower. I have been consistently on 5 mg of methimazole now for about 3 months.

I'm just beside myself. I had to correct my severe vitamin D deficiency, and was feeling amazing for a while. Wasn't exhausted, no anxiety, no tremors, etc. I truly thought remission possible. Now im just catastrophizing.

I work in Healthcare, and was teaching a class today. I noticed when I was pointing at something for a student, my hand was trembling. My heart sank, and went to get labs done for my next endo appointment.

Not sure what im looking for. Just heartbroken.

Hi! I’m currently on methimizole - my endo and I have been changing my doses accordingly to my biweekly/ monthly labs. Wondering if anyone has had a sensitivity to adhesives : such as boob tape, sticky boobs and or even menstrual pads. So uncomfy! I was feeling so good then my body switched and I’ve slowly shifted to hypo. Started severely hyper and Graves’ disease diagnosis.

Hey everyone. First time posting here, just needed to share this somewhere people understand.

So I'm 36 and just got diagnosed with Graves' disease after months of symptoms I kept brushing off. Lost 6kg without trying, constant sweating, hands trembling so bad I couldn't eat properly on a plane, legs so weak I struggled to put my pants on in the morning. I just thought I was stressed and tired.

What finally caught it was a rash that sent me to the dermatologist. He ran some labs and my TSH came back undetectable and free T4 almost at 6. Went to the clinic, HR was 120 at rest. They admitted me for risk of thyroid storm and AFib. Spent a few days in the hospital — scary doesn't begin to cover it.

But here's the thing that got me through it: my family. Being back home with the people I love, having them around during all of this — it made everything feel manageable. I'm so grateful I wasn't alone when this hit.

Follow-up confirmed Graves' — TRAb of 29.1, diffuse goiter, T3 through the roof. Now I'm on methimazole 40mg/day and propranolol every 8 hours. HR is coming down to the 80s. Tremors almost gone. Starting to feel like myself again.

And honestly? Knowing this has a treatment — a real path forward — changes everything. It's not a death sentence. It's a detour.

My big goal right now is getting my HR stable and getting back to running. My wife and I have a dream of doing the Disney run together and I am NOT giving that up. That finish line is my motivation every single day.

For those who've been through this — how long before you felt well enough to exercise again? And for anyone with high TRAb at diagnosis, did you make it to remission?

Thanks for reading. Glad this community exists. 🙏

Every night goes the same way…

I get sleepy. I get into bed.

My restless leg starts up.

I try stretching. Flexing. Massaging.

Nothing helps.

My head feels achey. My jaw. My skull. My neck. My hips. My joints ache.

The three fans I have on high and the a/c on don’t seem to touch the inevitable hot discomfort I begin to feel. I get up for an hour. I distract myself. I try again. More of the same.

I don’t sleep until 3-7am. Wake up at 11. Nap at 3/4 even though I know I shouldn’t. It feels like the only real sleep I manage to get.

I take magnesium and fast dissolve melatonin at night. In the morning I all the other meds.