r/gravesdisease

Hi

I’m sorry if this has been asked before, and also sorry if my English isn’t good it is not my first language.

I’m reading through every single post here since I’ve been diagnosed last year, and get literally lost into every type of symptoms, case etc. without finding something similar to mine, and need answers from this community.

Long story (not so)short: I (F35) was diagnosed one year ago last April. Was put on beta blockers and Neo Mercazole (carbimazole) immediately.

I’m now in the “normal range” since months, still on 5mg carbimazole per day and no beta blocker anymore, but even though my labs shows I’m back to normal, I do not feel “normal” at all. If anything I feel worse.

I have a plethora of symptoms and every doctor just tells me that it’s normal or that there’s nothing to worry about.

For example some of them include, on a daily basis; anxiety, depression, loss of energy, weight gain, tired all the time, hair loss, panic attack, brain fog, digestive issues (extreme bloating and starts to notice a gluten intolerance: gastrointestinal booking made for next month)… all that I think is normal, from what the doctors told me.

I also developed ocd from checking my pulse 1000 times per day in absolute fear of having another “thyroid storm” where my heart was at 220bpm and the ambulance had to come. I’m in h24 constant absolute terror of this happening again. It was traumatising, felt my body betrayed me.

But there is one issue that is making me feel worse than everything else.

The back pain. It’s absolutely awful. Its constant. From the moment I wake up, to when I lay to sleep, the whole day, my back is, from the top of the neck to the butt completely painful, everywhere, and very painful. Something like feeling trapped in a very old person’s body. Whether I lay on the floor, couch, chair, bed. It’s there. I’m walking every day in nature, stretching and doing some Thai chi to relax but it’s still there.

Doctor just told me… he also has back pain. Told me it’s normal.

Another doctor told me it’s the effect of my med (didn’t see back pain in the side effect list?) and finally another doctor told me it’s from my hyperthyroidism, although I’ve been stabilised since months. It’s like still losing weight after treatment and regulated thyroid: not so normal ?

I feel I’m the only one to think something is wrong, a chronic and painful back pain cannot be normal.

I’ve done weeks at the physio, one to two times per week and still it change nothing. I’ve stopped because I felt I has made them loose time.

Have you also had this ? How do you feel after being stabilised?

I feel so alone in this. Am I ever gonna be normal again ? Is it ever going to feel like a normal life?

I’m so sad. So desperate. No one understands.

I feel I am now a (stabilized) depressed and fat monster in constant pain and anxiety.

I use to have so much energy, I use to be positive, fit and hot, wild and free. I had so many plans and dreams, now my only dream is to be healthy again. I’m so sad.

Please be kind to me. I’m really hoping to have answers from this community.

35f, was diagnosed with Hashi’s years ago and I also have multiple other autoimmune conditions (Sjoren’s and type 1 diabetes among them) and usual antibodies, and tbh I used to say that Hashi’s was so far down my list of concerns I didn’t even think about it.

I took a low dose of synthroid and sometimes even skipped it… as far as I know, my thyroid levels were pretty normal… at least, they weren’t discussed. Other levels were urgently abnormal.

Then several months ago, one of my doctors said it looked like I was over-correcting. I stopped taking any synthroid at all. Next test, it was normal. Then, a different doctor said it looked like I was over-correcting… but I hadn’t taken synthroid in months. They checked for Graves antibodies, and I was negative.

My heart rate and blood pressure shot up over weeks. I have struggled with sleeping, but was sleeping an hour or two a night or not at all, and still feeling wired. Sleeping meds didn’t touch it. My Hashi’s antibodies were through the roof, so we assumed Hashitoxicosis…

Iodine slightly elevated (some mineral drops I’d used had some)…

Now, apparently I have Graves antibodies. So I somehow have both at the same time.

I’ve been taking 10 mg methamazole once a day for a couple months now I think… it seems to be fine. I am not tolerating beta blockers well. At all. Last couple weeks, I was so tired I could barely function and d was in bed for days. I’ve been weaning myself off the beta blockers thinking maybe I was ready, and cut my methamazole in half… but now I’m back to not sleeping.

Has anyone else had a similar experience?

Have you found anything to work for symptom control besides beta blockers?

Does anyone have any tips for finding a therapist that understands the physiological implications of Graves’ disease. I was seeing someone for grief counseling due to having a spouse with a terminal cancer. I think its possible that the emotional stress triggered my Graves’ disease. The Graves’ disease also exacerbated my emotional state so both issues were probably feeding on each other. Since starting on Methimazole I feel better than I’ve felt in a while both emotionally and physically. My issue with the current therapist is that she doesn’t seem to grasp what exactly Graves’ disease is I’ve had to explain to her that some of my symptoms were from Graves’ disease and not grieving. Since she doesn’t seem to be familiar with Graves disease I’m not confident she can fully assist me with my needs so I’m considering finding a different option. With a spouse dying of cancer and a new graves diagnosis obviously need help but I need to make sure I’m getting the right help. Anyone have any experience with this or trouble finding a therapist that understands Graves’ disease?

Helloo. Feel like I’m making multiple a week posts in here now😭 Diagnosed three weeks ago after being hospitalized and every endocrinologist is booked far far away. If I have a new diagnosis wouldn’t the endocrinologist want to move things around to see me earlier? I know I’m not the only person in the world that needs to see an endo but I thought maybe because I have only seen an endo when I was hospitalized a month ago (for a thyroid storm I think? My heart rate was 188 at rest) and the hospital told me to follow up two weeks with labs and an endo you would think their team would prioritize seeing me as a new patient to follow up. I’m on methimazole and metoprolol and idek if things are working because I don’t want to get labs if I’m not gonna be seen by a doctor. I got three different referrals and the closest date for an endo is May 7th. Mind you I got hospitalized/discharged end of March. I just don’t understand how I’m given this life altering diagnosis and then I’m just supposed to basically do nothing for weeks. To be fair I saw my pcp but they were kind of useless besides processing the referrals and that took a while in itself. They just confirmed what my labs and doctors in the hospital already did. I’m just frustrated and trying not to spiral.

TLDR: why are endocrinologist booked out so far away even if it’s for a new patient with a new diagnosis after being hospitalized.

How are you able to discern what symptoms (ex high heart rate and shortness of breath) are from working out and what is from graves? I (25yo female) am training for a triathlon, and I’ve run 3 marathons in the past, but I’m new to swimming. I’ve always had a really low heart rate, but this recent reoccurrence of graves has caused my heart rate to increase SIGNIFICANTLY when I exercise. However, when I swim my heart rate increases so much I feel like I’m dying and I’m not sure if it’s just because I’m new to swimming or bc my graves is untreated currently. When I swim it gets into the upper 180s/low 190s but then quickly drops to 140s as soon as I rest at the edge of the pool. I have an appointment to see endo next month, and I’m hoping to get a stress test/ecg if possible to check my heart. But anyway it’s so frustrating because I feel so anxious when my heart rate increases so much but I feel like I could swim so much more if my heart rate was slower. Any tips for managing graves and training would be very helpful! Any effects of methimazole with training?

hey guys! thought i’d share some updates on my weight loss journey (25 y/o F, 64”)

before i started my treatment in march 2025, i was ~115lb i believe. but once i started methimazole & metoprolol, i crept up to 127lb. i lost 10lbs, but gave up on dieting because i was really busy with life. but in august 2025, i was at 136.5lb and feeling extremely unconfident. however, starting jan 2026 till now, i have made huge strides in losing weight (currently 126lb). here is what i have been doing to lose weight again & still counting:

firstly, i would go online and search up “BMR calculator”. this will tell you how much calories you need to eat to MAINTAIN your current weight (mine was 1902 calories if i exercised 4-5 times a week)

morning:

- coffee/latte

- banana (if i planned on doing cardio) OR greek yogurt with berries

lunch:

- chicken breast, rice, and veggies (totaling 600 calories)

dinner:

- whatever tbh (making sure it’s 600-700 calories)

snack or dessert:

- blended protein shake with ice to make me more full

altogether, my calories for the day should be ~1700-1800 if i run or do yoga OR ~1400 if i don’t work out that day. this gives me about 100-200 calorie deficit per day.

this journey is super daunting, but i hope this gives others some encouragement to those who may have struggled with their weight gained as well. i think what happened is that hyperthyroidism made my metabolism go crazyyyy so when i started the meds, it slowed my metabolism, but kept that same hunger!! i kept thinking my endocrine was gaslighting me, but i found an old log book of my diet pre-graves disease @ 112lb, and sure enough, i was eating like a hamster.

When I got diagnosed back in December I read all about Graves’ disease. Found out about thyroid eye disease but saw that it was rare so I didn’t worry too much about it but it was always at the back of my mind. Treatment has been a world wind of feeling no energy to feeling normal to suffering terrible headaches not being able to sleep to sleeping way too much. I can’t concentrate and my balance has been off lately.

A month ago I started feeling weird in my right eye. I held back from telling anyone because I feel like it’s just been me giving complaint after complaint after complaint. Especially to my husband. I finally decided to tell him when I really noticed the double vision and I told my doctor who told me go to an emergency room which I didn’t do. Instead I found an ophthalmologist who sent me to do a CT. Got my results back today and sure enough I’m apart of that rare group with Graves’ disease and TED.

I found out at work so I had that to distract me. But now it’s almost 2am and I’ve been tossing and turning crying and pitying myself all night. I feel like I’ve burdened my husband with this. We barely have a life together. No kids, just working to build a life and now out of the blue I could end up losing my sight. I don’t even understanding what is happening. I’ve been so independent all my life and I’m scared of the thought of being disabled. Well, at least the tears sooth the dry eyes huh.

Once again, I just needed to vent. Feel free to share your story please.

Hello.

Since we are all in a club we don't want to be in, I figure I would introduce myself. Male, 38 from Chicago. Dealing with Anxiety issues since I was 14. Always hid it by being stoic like an idiot.

Anyhow over the years I had always had a crazy good metabolism and ate whatever I wanted. Weight swinging up and down etc. ignored it. When I was 35, I noticed my heart beating heavy a lot and developed Obsessive Compulsive tendencies out of nowhere.

Waited a year, went back to school to keep busy and got a Business Admin degree. Nothing gives you more anxiety than learning the real way the world works...

Anyway it got bad, legs shaking, hyperventilating, almost violent rage and anger. People actually thought it to be steroids because of some adult acne, too. I get a test. TSH suppressed.

You know what followed. Anyway a nodule was found that set off my anxiety and I had my thyroid removed. Methimazole beforehand was a demon drug so I couldn't handle it and refused radiation so to minimize TED risk.

It's been 2 years and I am still not euthyroid. 137mcg was too low. 150mcg too high. Other meds I take affect absorption. I've tried everything.

TLDR:

Does anyone know of any successful methods for mental health with this? Anxiety is unbearable fight or flight, especially in the mornings. Was on Zoloft for 20 years and it stopped working. Tried mirtazapine, bupropion, paroxetine, buspirone, gabapentin etc. Prozac helps with the depression. Not so much anxiety. Been on it 22 weeks at 40mg. The only other things that work are Atenolol or Propranolol and especially Clonazepam (Which absolutely no doctor will prescribe even in the lowest amount).

Does anyone have any tips on how to defeat the anxiety. It seems to just take hold and cause instant fight or flight spirals.

Thanks

I have surgery on the 23rd (in 2 days) and I’m honestly pretty nervous and trying to get myself ready.

I recently had a thyroid storm and ended up in the ICU, and I’ve been dealing with a lot since then with my thyroid and symptoms. I’m currently on meds like methimazole and propranolol, plus a few others to try to keep things stable until surgery.

At this point I’m just trying to prepare as best I can and not spiral lol.

If anyone has gone through TT surgery, I’d really appreciate advice on:

what you actually brought to the hospital that helped

what you wish you had packed

anything that made the first couple days of recovery easier

foods/things that were easiest to handle after

anything you think I should know going into it

Just trying to go into this as calm and prepared as possible. Any tips would really mean a lot.

I was diagnosed with Graves’ disease 7 months ago and have been on 5mg Methinazole. My biggest goal is to get pregnant literally as soon as possible, but I’m terrified of the risks of being on anti-thyroid meds (Methimazole) while TTC or during the first trimester.

My endocrinologist mentioned a total thyroidectomy as a 'fast-track' option, but I’m worried: is 7 months post-diagnosis choosing surgery too hasty? I know some people wait 12–18 months to see if they hit remission on meds, but I really don't want to wait that long to start my family nor do I have the biological time. I've already ruled out RAI because I don't want to wait the 6–12 months for the radiation to clear.

For those who chose surgery specifically for family planning:

• Did you feel like you were 'rushing' into surgery, or was the peace of mind worth it?
• How fast were your levels stable enough to get the 'green light' to try?
• If you had high antibodies (TRAb/TSI), did they drop fast enough after surgery to not affect the baby?
• Any regrets about not giving the meds more time to work?

I’m feeling the 'biological clock' pressure and just want a stable environment for a healthy pregnancy. TIA!

Hi! Here is a little background before my question. I was diagnosed with Graves’ disease about a year and a half ago, and I’m still trying to get stable on my medications. I had been stable for a few months, and then all of a sudden I became hyperthyroid again. I didn’t notice it at first, but I noticed my resting heart rate was about 110, so I got my labs done.

I haven’t had any problems with my eyes, but I was diagnosed with TED. In the past week, all of a sudden my eyes have started to hurt, and I feel a lot of pressure behind them. The doctor who diagnosed me was familiar with TED, but doesn’t specialize in it, so my endocrinologist referred me to someone who does. I haven’t been able to meet with them yet, though, because they could never find the referral. I finally was able to talk with them and got transferred until someone found it. While it is great that I got an appointment, my symptoms are worsening and they can’t fit me in for another month.

So that’s a problem, but what I came here to ask is: does anyone have any tips for working on a screen every day while having TED? I’m in marketing, and I’m on the computer for like 8 hours a day, and I’ve noticed it’s making my eyes and head hurt worse. Now, it isn’t confirmed that it’s because of my TED, but it would be the only thing I can think of, and it lines up with me becoming hyperthyroid. I can’t just take work off, and I’m also not able to meet with my eye doctor right now, and my endocrinologist isn’t in the office.

I’m probably overthinking things, and it’s just a small problem, but I’m freaking out a little and could use some advice.

TL;DR:

Diagnosed with Graves' disease in March 2025. Had an allergic reaction to Methimazole, but did well on Propylthiouracil (PTU). Due to a national shortage, I’ve been off PTU for ~2 weeks and my thyroid levels are rising again. Supply may not return until December. Looking for advice or alternatives, and wondering if it’s possible to safely get PTU from abroad.

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I was diagnosed with Graves’ disease in March 2025. I initially started on Methimazole, but after a few weeks I developed allergic reactions, so my endocrinologist switched me to Propylthiouracil (PTU).

On PTU, my thyroid levels improved significantly and I was mostly symptom-free.

Last September, my current endocrinologist advised reducing my PTU dose to 1 tablet per day. My levels went up slightly, so I returned to 2 tablets per day. However, PTU supply in my country has been very limited. To stretch my medication, I reduced my dose to once daily—but I’ve now been completely out of PTU for almost 2 weeks.

My recent lab results show elevated thyroid levels again, indicating a recurrence of hyperthyroidism. Unfortunately, the ONLY distributor here in the Philippines recently announced that their overseas manufacturer has suspended operations, and PTU supply may not resume until December.

I’m feeling stuck and unsure what to do next.

- Has anyone experienced a similar situation?

- Is it possible (and safe/legal) to have someone abroad purchase PTU and ship it to the Philipoines?

I would prefer to avoid radioactive iodine (RAI) if possible, as it’s very expensive here, and I previously responded well to PTU at the right dose.

25(M)

hey so about 5 months ago I started getting this new onset bout of insomnia. Waking up at 3am and couldn’t go back to sleep no matter what. Then January came around and I randomly got these random bruises all over my left arm. about 4-5 different bruises. I’ve been down this rabbit hole of looking up things online. at first I suspected GI cancer since I had blood in stool twice in 2024 but colonoscopy came back clear. another reason I suspected it was because of ongoing GI issues. I had yellow stools for 3 years now and it fluctuates a lot. I’ll go 3 weeks yellow loose stool and diarrhea and then 1 week of semi normal stools. I’ve had an endoscopy colonoscopy and ct scan of abdomen and pelvic area. all tests have come back normal. I also started having crazy heart palpitations that would come and go.

mentioned to my doctor that my mom had thyroid issues and so she tested my TSH and TPO

TSH was 1.50

TPO 700

Vitamin D 23

I’m just so lost and the fatigue is something I’ve never experienced before in my life. I’m usually a very active and high energy guy. I have a hard time believing that my thyroid could cause all these symptoms. why did it just happen 5 months ago. if it was a thyroid issue wouldnt I always have had sleeping symptoms? also I’m a male so i find it hard to believe this is the sole factor of my symptoms. please help. haven’t been at work for 2 months and I haven’t been socializing because of this stupid fatigue

Has anyone experienced their managed dose no longer being enough? I was doing well about 6 months ago on 100mcg but since then my TSH has risen to 12 - I usually start feeling bad at a 3 or 4 because normal for me is around 1.5. A TSH of 12 has had me in a week-long migraine. We upped my dose about 2-3 weeks ago to 137. This is the highest dose I've ever had to be on. I'm not seeing any improvement but I know that it takes about 6 weeks for full effect. My concern is how quickly and drastically my numbers changed. I've been on generic for a while and have been taking it as prescribed, 45mins-1hr before coffee or breakfast like I always have. I've read some people have changes in their GI that change absorption. Has anyone dealt with this? If so, how did you know it was an absorption problem?

I have had thyroid for 19 years. I am honestly so tired of taking carbimazole. I did radiation and after 1 year I am back on medication. My hair is falling in clumps despite using Minoxidil hair spray and my weight doesn’t go up at all. I tried gym and yoga and tried various diets. Yet I am still struggling with gaining weight, hair loss and motivation. Has anyone experienced this? Any tips are welcome at this point. I am seriously tired of being tired

Has anyone tried Holistic medicine for your Graves? What was the result?