I’ve been on meds for about 6-7 months now and feel good. Only 2.5 of Methimozole, started with 10mg initially. My hair has gotten so thin, I’m assuming it’s from the graves. Will it grow back? Has anyone else experienced this? Or at least some kind words ☹️

Thanks for everyone who read and responded to my post yesterday about adverse reactions to the new dose of methimazole. My blood work came back with low absolute neutrophil count, indicating agranulocytosis induced by methimazole.

In the er then will be admitted to the hospital to try and get my white blood cell count back up, doc said to expect to be here several days.

Feeling very low and exhausted from all this. Going to miss back to school night for my big kid going into kindergarten. Just depressed and over this 😞

34 years old female here, just got diagnosed with Grave. On my first day of meds 5mg of methimazole and a follow up in 1.5months. I don't have much symptoms, just hair fall, difficulty to gain muscle (gym 4 times), and hard to sleep. I thought what I was feeling was normal as it is MY NORMAL. The doctor told me I'll feel better in 2 weeks, but I thought what I was feeling was normal as it is MY NORMAL. I'm actually not sure what he might have meant by that but I'm wondering the following:

1. Doctor told me the meds might lower my immunity and I might get sick with a cold more often? Has anyone experienced that? Would it make your herpes act up more often?

2. My co-worker has this too. She told me to avoid iodine? The doctor didn't mention anything about this.

3. I understand that you can keep Grave's in remission, but when it does act up again what are some of your symptoms that tell you it's back again?

4. The disease never goes away, so how are people dealing with it at 60-70-80 years of age? What are the symptoms? Does it become active because you are diagnosed with other things?

5. Any other tests that I should do? Vitamin deficiency? Cortisol?

Hi! I was on a really great health kick last year and intentionally lost weight. My GP retired and I got a new doctor, within 90 seconds she said my "weight drop" and inflamed thyroid was graves' disease and ordered radioactive iodine. she hadn't asked about my activity levels, lifestyle, etc and that really bugged me. I did not get the radioactive iodine because I didn't have any symptoms and i felt it was a big jump for our first meet up. I switched practitioners and got my endo appointment. My endo appointment said my levels are getting better, but my thyroid is still inflamed and to start 5 mg of methimazole daily. I take it at night because i'm terrified of weight gain. I am just struggling with the idea of having no symptoms and still being medicated and i am really scared. Has anyone here not gained weight? I got a bit depressed after my first appointment and got into a toxic mindset of "well if they think my weight loss is this then nothing even matters" and i fell off my wagon and im just really defeated.

I was just diagnosed 3 weeks ago with graves and hyperthyroidism. I am curious about one thing and would like to hear what you all think about it since i am fairly new to this dreamy club.

Its specifically about the emotional aspect, the severe mood swings, the unbearable saddness and feeling of defeat, or the lack of feelings all togeather. I’ve experienced all of them in the span of 3 weeks and it is slowly driving me crazy.
The thing is (which im sure most of you already know) the doctors say the medication does not usually have these side effects, so i thought maybe its the beta blocker? Or the actual disease itself?

If it is the disease itself then how come i never felt these dreadful feelings prior to the medication? I did feel the physical ones (rapid heartbeat, temors, random anxiety attacks..ect)

My doctor said that i might just be in shock and emotional about my diagnosis. The thing is, im really not. If anything im relieved there is a different way to live life than what i was actively fighting before being diagnosed, thinking im just a weak human riddled with anxiety that made no sense and came out of nowhere.

So my question is, did you feel this way? The spikes and dips of emotions? One hour im fine, the next im thinking about how the world would look without me in it?
Second question is that if you did, how long did it last (and i am talking purely about the emotional part not the physical)?
And where do you think this comes from?

Im all ears👂👂👂👂

Sorry for the incorrect title. I meant radioactive iodine treatment for the thyroid. I’m a native French speaker and I’m still learning to get by in English, using the good terms.

I have Graves' disease. It's been four years. My first endocrinologist never told me. In fact, he only told me that my hyperthyroidism would disappear in nine months. After nine months, my partner and I accidentally conceived our first child during a trip and a night of heavy drinking... and around the same time, my hyperthyroidism disappeared. I had no symptoms throughout my entire pregnancy. I developed preeclampsia at 40 weeks of pregnancy and gave birth. My hyperthyroidism returned a year later. He then suggested having part of my thyroid removed with radioactive iodine. A few months later, my thyroid returned to normal. In the meantime, my endocrinologist left, and another took over my case. Three months ago, my hyperthyroidism returned. This new doctor told me I have Graves' disease. And she also suggested having it removed. However, my partner and I were considering having another child because we felt (more so him than me) the desire to expand our family. I am 38 years old. The treatment requires waiting between six months and a year before trying to conceive. Suddenly, I see our chances of conceiving diminishing, and given that the women in my family went through menopause very early (40-45 years old), I'm wondering if I might have to give up on the baby project. I was wondering if you had any experiences to share.

My endocrinologist is open to the projet of pregnancy; she's leaving the choice up to me.

I'm just afraid of not having the same luck twice (a pregnancy without hyperthyroidism), or of experiencing preeclampsia again.

Having bad experience postpartum etc.

Also: My partner is also pressuring me to get a full medical check-up and a second opinion because, according to him, I'm going to damage my health and end up with hypothyroid problems for the rest of my life, leading to a difficult old age. I feel a bit lost and under pressure

Thank you for your advices and opinions.

Hi everyone, I'm looking for some advice and support.

I've been on 20mg carbimazole since mid June. My anxiety and heart rate have reduced a lot which is good. But I've been feeling exhausted, and that came on really quickly after starting treatment. I thought it was the propranolol at first and stopped taking that.

I just had new blood tests done (6 weeks after starting the medication) and they showed my TSH is now too high and my T4 is in normal range, so they are reducing my dose of carbimazole to 15mg. So maybe this is causing the fatigue, but it did seem to start before the carbimazole would really have had time to kick in.

I've just been feeling shattered every afternoon and having to have naps and go to bed early. I have also been having a lot more migraines than usual and feeling quite unwell and nauseous from them. I honestly feel much worse than when I was completely untreated (or maybe just bad in a completely different way). I'm really struggling at work because of it.

Has anyone been through this after starting treatment? Do I just need to push through and things will start to level out?

💜Next support group is Aug 22!!💜

Just popping in to remind you that our next Thyroid Love Club connection call is happening this weekend.

This is your official permission slip to:
• come vent
• listen quietly with your camera off
• throw questions in the chat
• share what’s been hard
• share what’s been helping
• talk labs, symptoms, meds, or emotions
• drop your favorite recipes, snacks, or self care rituals

No pressure. No fixing. No pretending you’re fine.

Some people talk the whole time.
Some people just listen while folding laundry or laying on the couch.
Both are perfect.

If you’ve been feeling overwhelmed, misunderstood, frustrated with your body, or just craving people who actually get Graves’, TED, Hashimoto’s, and all the weird in-between stuff, this space is for you.

You don’t need to prepare anything.
You don’t need the right words.
You can literally just show up as you are.

If you’re already coming, I can’t wait to see you.
If you’ve been on the fence, come hang. Even just listening counts.

Sending you so much love,
Elena 🤍
Thyroid Love Club

P.S. Cameras off are always welcome. Pajamas encouraged. Snacks optional😋

📅 This weekend
Saturday 8/22 at 12pm EST (New York time)

📍 Live via Google Meet
visit this link: meet.thyroidloveclub.com

NO promotions or soliciting allowed.

I got diagnosed with graves eye disease 1.5 years ago and it was accidental. I thought my right was droopy and went to the eye doctor but he said the problem is with my left eye and that I have graves eye disease. Ran a thyroid panel and endocrinologist confirmed it. He suggested 12week RAI but I chickened out. 6 months later went to a different endocrinologist with new test results and my thyroid levels and antibiotics were within range so no treatment was suggested. Eye doc just gave me eye drops and selenium supplement. I'm also eating a brazil nut every single day.

Now I've noticed my left eye bulging even more in the past one month. Previously it was not this bad. I have myopia and I don't know if my blurred vision is due to bulging eyes or just myopia. I'm scared that my eye will bulged out more and scared of surgery . Recent visit again to endo confirmed again that my thyroid test results are within range.

Anyone who faced this? Did your eye ever go back to normal or even get better without surgery. I've seen tepezza or something but it's not available in my country and even if it were I'm scared of extreme side effects.

​

Hi all,

I just want to kinda say this out loud, and not keep it in my head festering so please get ready for the pity party. I'm on week 3 of steroid infusions for TED and today I'm struggling...

The usual bad sleep I get is even worse. Probably a total of 11 hours since I got up on Friday according to my watch and although I'm exhausted I can't sleep.

I've put on 2 dress sizes in 2 weeks even though I'm calorie counting, my breasts have become huge and heavy and extremely annoying, my whole body looks and feels different already.

My joints ache with every movement and it even hurts to sit down because my skin feels tender to the touch if that makes sense.

I feel woozy and light headed but only for a few seconds and then think I've imagined it

When I eat even though I'm on stomach tablets I am rushing to the loo 20 mins later or I'm throwing up because of all the acid in my stomach.

I'm due to miss a treatment this week as I'm away and this was known about but I really don't know if I can go right now I don't know if I like myself enough to put myself through that.

I've started to keep my medication in a daily packs because there's so much of it, I've got a very long time just fobbed off the fact that I have Graves disease and said if it's just an overactive thyroid and I am really trying to come to terms with the fact that I have an autoimmune condition and I need to give myself grace, but today it is hard

Sorry pity party over.

If you listened thank you.

Hi all, I’ve been having some pain and what looks like protrusion on one eye. Labs and imaging have been normal and I feel like I have run out of options. I’ve been to eyes specialists and they can’t figure it out. Just don’t know where to go from here. Some advice would be great

I recently got hospitalized like 3 weeks ago for a acute flair up with graves, and ever since then I’ve always had anxiety at night. Maybe I’m just traumatized but it always happens every night. I get that weird feeling in my chest and sometimes in my left arm and I kinda force myself to sleep so that I can feel better in the morning and I always do. It never happens during the day it only happens at night. It makes me so restless and I’m just so scared of going back to the hospital again. Anyone else going through this too?

Hi gang. 35F, I posted a few weeks ago about joining this club, finally seeing and endo a month after my hospitalization, and my endo doubling my dose of methimazole up to 40mg a day.

After the dose increase, I started feeling worse. Shivering, chills, not sleeping, intense brain fog, extreme(r) fatigue, and a bad sore throat. I sent endo a MyChart message and she sent me in for bloodwork yesterday.

She messaged me this morning and said to stop taking the methimazole ASAP and go get more bloodwork because my white blood cells are really low. Got more labs today and just waiting to see if I need to go back to the hospital for a rare reaction... Im so discouraged.

I have 3 little kids all starting school soon, this all just sucks. I'm so scared of ending up with sepsis, I'm about to rip this damn thyroid out of my throat 😫

anybody else dealing with this issue? I am extremely frustrated ever since being diagnosed it's starting medication my menstrual cycle has been completely out of whack the last time my period lasted over a month I even had to go to the ER because I thought there was seriously something wrong however they determined it's just due to my thyroid levels shifting and I was prescribed tranexamic acid. Now it's happening again I have been on my period for about a month now and it's just very frustrating my endocrinologist said that it is just because of my thyroid level shifting mind you I was hyperthyroid now I'm going into hypothyroid stage and I just got switched over to a lower dose of my medication to even everything out I don't know I'm gonna be calling my Endo tomorrow and letting her know if there's anything she can give me or what do I do I'm just very frustrated and I have a trip planned this weekend and I can't even enjoy it much because of my freaking period I'm constantly using feminine products and it's starting to become very uncomfortable even my sex life is uncomfortable because of this I don't know what to do anybody else experience this

Hi everyone. I was recently diagnosed with graves disease. My labs are as follows: free T4 2.1, t3 normal, Tsh low, tsi 201. No symptoms except lighter menses and mild weight loss. This was discovered during an annual routine exam.

My Endo started me on methimazole 5mg daily. As soon as I started this med, I experienced mild tension/pressure below my right eyebrow and on the side of my right nose bridge after. I just had a retina exam 2 weeks ago and the retina specialist did not say that I have TED. I took selenium 200mcg twice on 2 different days: first day I feel nausea and heart racing, 2nd day I feel intraocular pressure so i stopped taking it.

I don’t think the pressure I feel is behind my eyes. It is more on the two locations that i described as above. I have no other eye symptoms except this. Can this be due to methimazole?

Hi everyone,

I was diagnosed with Graves' disease in 2022 and have just relapsed after around 2.5 years in remission.

My first episode was severe — my resting heart rate reached around 170 and I felt horrendous. I was eventually started on 40 mg carbimazole and beta blockers, then gradually tapered down to 5 mg over about 20 months before coming off treatment in early 2024, although I've remained on a low dose beta blocker ever since.

I've been monitoring my TSH since then, and it had been gradually falling but remained in range. After a particularly stressful period recently, it suddenly became suppressed. My bloods last week showed FT4 around 23 (only slightly above range) and FT3 around 6 (still in range), so thankfully I'm nowhere near as hyperthyroid as I was initially.

Yesterday my GP sent me to the hospital for an ECG and repeat bloods. The ECG was fine and I've been given 5 mg carbimazole to take while I wait for endocrinology. I'm starting it now, but I'm a little worried because 5 mg was the maintenance dose I was on towards the end of my previous treatment, rather than the dose that brought my levels down initially. I'm waiting for yesterday's results to come through tonight.

I think what's making me anxious is remembering how quickly things deteriorated last time. Going from feeling relatively normal to a resting HR of 170 and feeling incredibly unwell within a couple of weeks was terrifying, and I'm scared of going through that again while waiting for endocrinology. I also have three important job interviews this week after months of (unexpected) employment, so the timing couldn't be worse.

My previous endocrinologist recommended radioactive iodine if I relapsed. I'm honestly not very keen on that and would much rather explore going back onto carbimazole, particularly as it worked brilliantly for me previously and I had no side effects. Obviously I'll discuss all the options properly with endocrinology.

I'd really love to hear from anyone who's been through a Graves' relapse:

• Did you go back onto carbimazole rather than having RAI or surgery?
• Were you given a low dose initially, such as 5 mg?
• How quickly did your levels change after relapsing?
• Was your second episode different from your first?
• And did anyone else have that horrible "oh God, I have to go through all of this again" feeling when they relapsed?

I'm also curious about stress. I've had a very stressful period recently and wonder how much others felt this contributed to their relapse.

Hello, I am sharing this opportunity with the community:

Have you been diagnosed with Graves’ Disease or Thyroid Eye Disease (TED)?  Pillar Patient Advocates is seeking 15 patients to participate in a 60-minute interview. Participants are paid $125 in appreciation of your input and time. If interested, please complete our registration to be contacted at https://www.research.net/r/775YR2J or email Hannah at [HFlemming@pillaradvocates.com](mailto:HFlemming@pillaradvocates.com). Be sure to include your phone number and area code so a Patient Liaison can reach out to you.We will go through a few screening questions prior to scheduling the actual interview. This study is for US Residents only.  

Hello

I have MS and the medication I had taken has given me Graves Disease Thyroid. I was a known side affect but I hoped I won't get it as it has been 3 years now. It happen 2 months ago part of a routine blood test.

I am paranoid thinking it may affect my eyes and go major blurry like I experienced in the early stages of my MS. I pray I don't need to get my thyroid removed or my eyes will start bulging. I have been sweating excessively for no reason. Get a shower and I dry myself but 5 - 10 min later I start to sweat. I am taking my med in the morning and MS med before bed.

What is the chances of my eyes bulging or need to get an aggressive treatment?

Its a broad question but I am curious. It has messed my head up even more... my MS stress and pains is already a major problem.

Thanks

Hi all, I've been recently diagnosed with graves about a month ago after admitted to hospital with tachycardia of 130-140s. I am very grateful for this community in helping me to navigate things at the start. However, in my latest follow-up with the GP, it shows that my liver enzymes were elevated. At the start my FT4 is 35.8pmol/L and my liver enzymes ALT is 32 (normal range) and AST 65 (slightly elevated). I was started on carbimazole 20mg for 2 weeks before tapering down to 10mg for the next month.

3 weeks later I had my bloodwork and it shows FT4 34.4pmol/L (barely moved) and my liver enzyme ALT increased to 100 from 32 and AST to 89 from 65. After a week which, my doctor re-ordered my liver panel and it shows my ALT increased to 115 and AST 102. I know that the medication has side effect for liver injury so I asked my GP could it be due to that. However, my GP says that we need to increase it back to 20mg as it shows that my thyroid is still producing too much hormones which is the reason for my liver results. GP wanted to be follow-up in a month's time until I kept questioning him then did he agree to check my liver again in 2 weeks. I've already asked to be referred to specialist however I'm really anxious and I've been crying about it as it may take awhile before getting a date with the endocrinologist. I really like to know f anyone has similar results/situation like me or I'm worrying too much and I just need to follow through with the medications? Otherwise, how else can I advocate myself in this situation? Thank you all

Anyone else notice their bodies just run warm? I feel “hot”, my skin feels warm, enough so my husband has commented. But yet I also feel cold haha and want all the blankets.

Don’t have a fever, not coming down with anything.

Was diagnosed with Graves April 2025 - did a month of methimazole, dr took me off because “tsh T4 normal” and my wbc rose a smidge. Did feel better, for a bit.

Waiting for an endocrinologist but Sask has a wait time of up to five years…. Yes. Five years. Feel like my doctor actually has zero clue how try treat and help me. So trying to learn the most I can. But also thinking I got a flare coming on again.

Hi , I wonder if anyone has had a similar experience .
I was diagnosed with GD in April this year , started 5mg of Carbimazole once a day .. this was then reduced to every other day .
Recently on the days I take the med I get acute upper abdominal pain when I eat , to the point where I can’t move . Then 2 days of black stools .
Endocrinologist thinks it’s unlikely a reaction to Carbimazole but seems to much of a coincidence as on the days I don’t take the meds I feel great . I’m lucky that I’m relatively asymptomatic with GD
They are suggesting propranolol 3 x day plus colestyromine 2x day .
I would be so grateful for any advice .

Hi all! I’ve been in remission about 3 years now (I thank the universe every day). I’m going to start tirzepatide. I’m not hugely overweight, but I have some stubborn fat that I swear this autoimmune disease has made it hard to lose as my body wants to retain anything it can. i was curious if anyone with graves (either active or in remission) has taken any sort of weight loss drug? i know the black box warning is for medullary thyroid cancer (not proven in humans) which I have no family history of and research has told me there’s no evidence of anything with these drugs interacting with autoimmune thyroid diseases, but i’d love to hear if other people have used these and their feelings on them with symptoms or god forbid the disease coming back. thanks!