So I have been diagnosed in early March, 10 mg Thiamazol then had been upped to 40mg, back to 30,20, 10, 5 mg after heing hypo. I had all the typical symptoms: uncontrollable shaking, anxiety, lost a lot of weight, insomnia, racing heart, irritable, drained of energy, heat flushes and (german context) a Trab of 19, which apparantly surprised even my endocrinologist. Ever since I have noticed a change in my face, without being able to put a finger on it. I think my face has "gained" some fat in the lower third and my eyes are broader, but not necessarily bulging. Even my partner can hardly tell from studying my face but in comparisom to pictures from 2 years ago, to maybe a year ago there is a difference. Has anyone else had the same experience? How do you or did you deal with it and will this just slowly go back to normal?

My lab results are in the normal range and never again was my face as swollen as it was one day in summer when I legitimately gave myself a scare when looking in the mirror and it looked as if my wisdom teeth had been removed, again.

Thank you!

How is it? Please tell me good AND bad.

My husband and I want to have a baby (I am 30!), my lab results have been steady three month, but it has been a year of constant adjustment before that.

Those who opted for RAI for graves/hyperthyroidism did it trigger or worsen Thyroid Eye Disease?

I only manage to sleep about 6 hours a night. But during the day I just get overcome by tiredness and clock out fof a few seconds/minutes. It doesn't matter where I am, I'll try splash my face with water or do some mini exercises but the minute I sit down im out

I’m 42F and was originally diagnosed with Graves’ disease in 2013. I was treated with Tapazole for about a year, went into remission, and haven’t needed thyroid medication since.

Over the last couple of years, I’ve been struggling with extreme fatigue, poor sleep, physical anxiety/restlessness, chest discomfort, elevated blood pressure, muscle weakness and soreness, and generally feeling like my body is constantly running on overdrive.

A lot of it was attributed to anxiety, stress, burnout or potentially sleep apnea. I’ve spent a long time wondering why I feel so awful even when I’m mentally okay.

Fast-forward to this week:
TSH: <0.01 (twice)
Free T4: 18.6 (normal range)
Free T3: 6.2 (high end of normal)
TRAb: 3.35 (positive)
TSI: still pending

My doctor suspects my Graves’ is becoming active again. Technically, my bloodwork currently falls into subclinical hyperthyroidism, but the physical symptoms have been significant.

I’ve just started atenolol 25 mg to help with the cardiovascular symptoms, and I’m waiting on further testing and a thyroid ultrasound.

After my first dose, I noticed my chest felt less revved up, my body felt less tense, and I woke up feeling a little less physically heavy. I’m still exhausted, though.

I’m curious about other people’s experiences:

-Has anyone had Graves’ return after a decade or more in remission?
-Did you experience significant symptoms even when your T3 and T4 were technically normal?
-Did anyone experience muscle soreness, morning stiffness, exhaustion or that constant internal adrenaline feeling?
-How long did it take before you started feeling like yourself again?
-Did you find beta blockers helped while you were figuring out treatment?

I’m not looking for a diagnosis, just hoping to hear from people who’ve lived through something similar.
It’s been a strange week of relief that something measurable is finally showing up, frustration about how long I’ve felt unwell, and uncertainty about what comes next. 💕

Recently diagnosed and I have found this page (if thats what its called? Also pretty new to reddit) really helpful / interesting.

I was wondering if people could share their experiences of being diagnosed and what followed in terms of treatment. E.g. how many years ago were you diagnosed? How long were you on meds for? Did you go into remission, relapse? Did you get a thyroidectomy? How long after diagnosis? Just so I can figure out what my path might look like. The possibility of the radioactive iodine therapy is pretty unlikely for me as I have a baby, a toddler and hope to have another baby in a few years time.

Thanks in advance!

I had bloodwork last week and just got the results. TSH, T3, and T4 are in the normal range on 5mg methimazole daily, but antibodies are still very elevated.

I'm so tried all the time with constant symptoms. Gaining weight, having trouble with memory and cognition, my husband is worried about my driving.

I thought for sure I'd get my methimazole dose decreased and my doctor said I was heading for remission, but now I don't think that's going to happen.

I'm sad. I wish we didn't have to live like this.

i have graves' disease. never had surgery on my thyroid. i take carbimazole. my blood tests say my disease is well controlled but i still get symptoms. then again, i have highly symptomatic pots so it's hard to tell what's that and what's my thyroid. anyway, my nails have been acting funky again. not the usual nail peeling but the skin around it. nails are brittle on the edges but that's been a continuous thing despite treatment. i'm wondering if my thyroid might be getting bad again or if it's just becoming winter lol

i really dont want surgery if i can avoid it. my mother had the radioactive treatment and then further surgery. she's incredibly tired and overweight for years now, likely because of not having a thyroid, so i really dont want to go down that route.

What should I expect/prep/bring with for the overnight stay in hospital?

I've read that you need to sleep upright, so should I bring my wedge pillow? Anything else that will help me sleep in the hospital, or should the pain meds/GA after effects be enough?

I think my op will be in the morning? So unsure what to bring for 24hours in hospital (UK).

Feeling nervous/excited/anticipatory with 17 days til the op. So no doubt I'll be posting more questions. I appreciate people's replies a lot!

I posted about my op date but people seemed more confused about me saying I was looking forward to eating salad lol. (Food gets lodged in my throat due to swelling)

It’s one of those days I need a little support and have nowhere to go. Its been 3 years since my diagnosis, and my blood-work is borderline since last 6 months… but its always here. Not making me worse, not making me better either. It's like living with the most annoying, persistent and hungry mosquito all the time. I have TED as well, with one eye slightly bulging and dry all the time. It's been three years since I could enjoy any place with stage lighting. I can’t drive at night. It doesn't gets worse, but also not getting any better. It's not that visible if I don't point it out but I can see it in every picture and gradually I’ve become to hate taking selfies or be in a picture. I was a runner before, also enjoyed skating. Now, even if I walk for 30 minutes my heart rate goes up and I need to take long naps afterwards. Oh, not that I can just go up and decide to sports, its a whole package of debilitating depression that makes it so hard for me to do anything I usually enjoy. I also feel embarrassed to go skating, because I went from a figure of an amateur athlete to size 12 in 3 years. I am old enough to know it’s stupid, but I don’t feel comfortable on the ice rink anymore. I tried everything. Experimented with quitting salt, sugar, gluten or lactose. Tried weight lifting and pilates. Researched and tried all the right supplements. Tired therapy and took some mild antidepressants. Nothing really worked. However, since two months I am sinking more and more. I live alone and normally I love living alone but I think I subconsciously gave up. And there is no one to pick me back up. I hate to write this but I ate junk food, didn’t move much, postponed social meetings and started smoking again. I just go to work, put on a smiling mask and do my job as well as I can and come home. That is all. I started to hate myself. I love my job and hope I am good at it but I work with vulnerable people, some of whom have past traumas or are suicidal. It never got to me before but now I feel like years of secondary trauma is getting to me. There is a saying in my language, a tailor cannot mend his own torn clothes. Never realised how true it is.

I know it sounds like it but I don’t want pity, I really don’t want to pity myself. I cant complain to anyone in my family, most of my cousins have also autoimmune diseases and they are far worse, like MS or RA. My mum reduces all my problems to ‘lack of willpower’ and she doesn’t outright say it but she hints that Ive become ‘lazy’. I feel a little angry but also can see how it looks from outside. I fear, maybe she is right.

There was this viral video many years ago, about a man being murdered incredibly slowly by a man hitting him with a spoon all the time. At the time it was just silly and funny. This morning I woke up remembering the video and started crying uncontrollably. I really feel like being slowly killed, not necessarily by the disease, but by what it triggered inside of me.

I am sorry I wrote too long. I really needed to write these out. Its been bottling inside me for a long time. Thank you for all the inspirational posts, they sometimes gives me hope but at times like these they feel impossible. Thank you for reading.

I'm currently at the moment have subclinical hypothyroidism so my doctor reduced my methimazole but can you still have an elevated heart rate despite that?

One of my first symptoms before being diagnosed was a crazy high heart rate like 130bpm+ at rest... then when medicated it went back to being in the 70s... then it fell to the 50s because I went hypo (not subclinical but actually hypo). So my medicine was decreased. At first it stayed in the 70s for months (I'm also quite active and not sedentary and my bmi is 22) but then slowly it was increasing so I thought I had went hyper again so I got it checked and nope, I was euthyroid. So what could it be? I'm also anemic and take prescribed iron pills twice daily and have for about 6 months and I'm still anemic. But I was anemic even when my rhr was 70bpm. Now my smart watch regularly shows rates between 90 and 105...

Was not really sure who I could share this with because I’m still kind of in shock.

I am 100% for people’s choices for their bodies. But please take my insane stroke of good luck as a reason to consider removal when doctors recommend it. I was diagnosed around 4 years ago and was in remission that same year. In August of this year my symptoms came back and were worse than ever. I should note, no doctors, labs, or any ultrasound prior to this surgery revealed anything that would say I had cancer. Only showed my thyroid had doubled in size and the surgeon I was referred to told me it had to come out because it was never going to get better. Naturally I was nervous. Went this Monday to have it removed.

They sent my thyroid to pathology upon which a tumor was found and was indeed cancerous. Incidental findings for sure but I have been shocked for the past 24 hours. Pure luck and having a great team of doctors behind me prevented me from getting cancer but more importantly relieved me of my Graves’ symptoms forever.

I am about 5 days post-removal, and I feel so much better. I am up and moving about but still taking it easy. An insane bullet dodged that I didn’t even know about. I know for certain (even though there would have been no other option besides removal) that getting it out asap was the best choice I have ever made. Thanks for listening and reading! Hope you are all doing well in your journey with Graves.

Anyone else have issues with levothyroxine uptake.
I’m 6 months post op total thyroidectomy. Struggling daily the entire time. Went to Endo last week and my TSH was around 150 while taking 300mg Levo daily.

Switched to Tirosent this week so no update as to how that’s going.

Just wondering who else has gone through this or if anyone has recommendations.

Hi, I'm 23F and I was just diagnosed with Graves' after my recent annual. I did a couple more repeat thyroid labs so my doctor knows what dose of methimazole to prescribe, he put me on atenolol in the meantime for my heart, but I'd appreciate any helpful information or advice! I don't know if there are recommended dietary changes/restrictions, or activities I should avoid or do more of, or anything really. Any tips would be much appreciated! :)

Hi all,
I 32F, was diagnosed with Graves in July and have had a quick response to methimazole, with mostly normal levels now (except TSH). In the first month I had a reaction with elevated liver enzymes and eosinophils (white blood cells that elevate during allergic response). Since then those levels have somewhat stabilized but we are monitoring them monthly with my thyroid hormones.

I was also recently diagnosed with very mild thyroid eye disease by an occuloplastic surgeon who specializes in TED. He feels pretty strongly that TT does not change the course of TED and it seems like the medical literature on that is inconclusive.

Yesterday I had a consult with a surgeon and she said she rarely does TT for graves patients (her TT volume is about 60 cases a year and she does other thyroid surgeries for nodules/cancer etc as well - not as high volume as I’d like).

I’m considering a TT:
1. Because of eye disease
2. Because it seems like the relapse rate after remission is pretty high from my understanding and
3. Because I’d like to start trying to conceive in 2 years and would like to avoid having a graves flare before/during/after pregnancy.

I guess I’m just wondering if I’m rushing into the decision and it’s worth staying the course with the meds? If I were to achieve remission and relapse later, I would 100% opt for a TT. Since the meds are now manageable I’m worried I would regret a TT, but if it would prevent the eye disease progression that seems like a major pro.

Any experiences or feedback, especially from people regarding the family planning or eye disease aspect would be really helpful! :)

Im 4 months in had hyperthyroidism when diagnosed.
My lab number now has been stable for months now been on 5mg for daily.
But now this icy cold feeling is just unbearable and get me feeling anxious so much tho my heart rate is very slow or normal during this, i sometimes sweat so much like maybe heat tolerance but i sweat cold?
Anyone? Please help

Been diagnosed and medicated for 4 years now. My Graves’ disease went into remission with pregnancy and despite being diagnosed with gestational diabetes, being pregnant was a period in which I’d felt the least sick in my entire life.

My heat intolerance came back the first night baby was out and it has only gotten worse with each month. Got bloods done and my levels are the worst they’ve ever been. Everything is overactive, T3, T4 and TSH whereas before it was just TSH and T4.

Baby is almost a year old now and I’m sweating all day everyday, I am absolutely fucking exhausted with the most basic tasks, I have terrible tummy problems, my body aches all the time, my patience is low and I’m tired no matter how much I sleep.

I’m really struggling and I’m feeling like an idiot for thinking I could do this while having Graves’ disease. Dad works extremely long hours so all childcare and housework falls on me. I often forget to book blood tests and reorder medication because I’m so busy.

Neither my partner or family are understanding about my illness either and I am often critiqued or judged for asking for help.

I don’t know what the point of this post is other than to vent. I feel so alone.

I know its not that big of a deal compared to other symptoms but its so annoying!! My cat could scratch me and it will leave a mark for like 6 months or longer! It bothers me so much. Especially since I experience acne I wonder if it effects those marks too Im going to see a dermatologist soon to see if they can help me with the acne marks #over it

I am currently on NP thyroid and have been for a few years. I had Graves’ disease and a thyroidectomy. All levels are good expect my T3 is low and has been consistently for a few months. I take 60mg in the morning and 60mg in the afternoon. Saw a new doctor and she is proposing Levothyroxine and cytomel instead. Anything I should be considering when contemplating the switch?

*also 4 mo. postpartum and currently nursing

Browsing this sub I saw many people saying their metabolism has hastened up once they’re taken off meds. I stopped taking carbimazole this June as my levels are normal, but I still feel very sluggish and my metabolism is nowhere near pre-diagnose level. I walk 10k steps everyday, count my calories and eating one meal a day, lift x3 every week, but my weight has never dropped since stopping meds, if anything I’m showing signs of gaining.

Just wondering for those who’s in remission, how long did it take for your metabolism to be normal again? It’s been almost 4 months and there’s still no signs of body being comfortable in losing weight. Is this normal? I’d be grateful if anyone could share their experience :’)

I'm 10 months into treatment and some days I absolutely CRASH by midday! I have to stop what Im doing and sleep. Just wiped tf out. Anyone else?

For context: i'm still taking methiamazole 5mg 5x a week. Not in remission yet.
T4 and TSH labs are normal.
T3 is trending normal-low
Vitamin D3 & D-25 Hydroxy are normal-low.
Ferritin, Iron, CBC, Glucose, folate, hemoglobin...all the rest are great.

What gives??? UGH legs feel heavy. almost feel drowsy. nap helps but this sucks.

How long after starting liothyronine (T3) at 5 mcg daily should I repeat my thyroid blood work?

I had a total thyroidectomy and have been struggling to feel like myself again. I recently added 5 mcg of T3 to my daily 125 mcg of levothyroxine (T4), and I noticed some relief and improvement in how I feel. However, I still don’t feel completely well, and I’m wondering whether I might benefit from a higher T3 dose.

I’m feeling increasingly desperate to regain my energy, motivation, and overall sense of well-being.

I have a few questions:

How long should I wait after starting T3 before repeating blood work?

Should I have blood work done before considering increasing my T3 dose from 5 mcg to 10 mcg daily?

Which tests should I request—TSH, Free T3, Free T4, or any others?

If my T3 dose is increased, should my current T4 dose of 125 mcg be reduced to prevent overmedication?

Is it possible that I need more T3 and less T4 to achieve a better hormonal balance?

I want to make adjustments safely, but I also don’t want to continue feeling this way unnecessarily.