r/gravesdisease

Hi! I’m 28 and was diagnosed with Graves’ disease about 1.5 years ago. I’ve been on methimazole and propranolol since then, and I feel like I’ve been on such a roller coaster with my thyroid levels.

What’s been especially confusing is that I’ve had probably 4 different flares while taking essentially the same dose of methimazole. I can be completely stable and in range for months, then suddenly go very hyper or even hypo without a major medication change. I recently had a virus that seemed to trigger another hyper flare, and I’m just feeling so defeated by the unpredictability of it all.

My husband and I started TTC this year and desperately want a baby. We’ve tried for about 5 months during periods when my thyroid levels were stable, but haven’t conceived yet. All of my fertility labs so far have looked good, including progesterone (was 18 at 7dpo), and I appear to be ovulating (positive lh strips and excellent labs). The main thing I haven’t done yet is an HSG to check my tubes. I’ll schedule that soon.

I know 5 months isn’t technically considered infertility at 28, but having Graves’ in the background makes it so hard not to wonder whether the autoimmune activity, inflammation, or fluctuating thyroid levels are making things harder. and if i’m wasting time not getting a TT. Im wondering if the inflammation from autoimmune is ruining my egg quality??? I over think this every single day.

I have an appointment with my endocrinologist in September to discuss definitive treatment, and I’m really torn. I’m scared of thyroidectomy because I’ve never had surgery before, and Graves already makes me worry about my heart rate during surgery, my goiter, anesthesia, and potential complications. At the same time, I really don’t want RAI because we want to TTC as soon as safely possible and I know pregnancy has to be delayed after treatment. I feel like i’m running out of time at 28. I want multiple kids. Also, we aren’t rich whatsoever and can’t just choose to do IVF. Any tips on surgeon as well? I’m near Portland, Oregon.

I would LOVE to hear from other women with Graves’ who were TTC. Did you stay on medication and eventually conceive? Did you choose thyroidectomy before pregnancy? If you had surgery, how was your recovery and how long did it take to get your thyroid levels stable enough to TTC afterward? Did anyone have Graves that kept fluctuating like mine despite being on the same medication dose?

Positive pregnancy stories would be especially appreciated because I’m feeling pretty discouraged right now. 😞

*** Of course, I’m discussing all of this with my endocrinologist and will make treatment decisions with my medical team, I’m mostly looking for experiences from other women who have been through something similar. Thank you!!! Appreciate any advice.

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?

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 ☹️

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.

Edit: 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've edited my question in hope it's more exact in english of what I'm trying to explain and ask.

I have Graves' disease. It's been four years. My first endocrinologist never told me that I had Graves.

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 together and around the same time, my hyperthyroidism disappeared.

I had no symptoms throughout my entire pregnancy. I only developed preeclampsia at 40 weeks of pregnancy and gave birth. My hyperthyroidism returned a year later. He (endocrinologist) then suggested having part of my thyroid burned with radioactive iodine. A few months later, my thyroid returned to normal. And it was normal without medication, for almost 7 months.

In the meantime, my endocrinologist left, and another one took over my case.

Three months ago, my hyperthyroidism returned. This new doctor told me I have Graves' disease and suggested that I do a radioactive treatment.

So during my last visit in her office she explain to me that with the radioactive iodine treatment, they’ll give me enough to burn the required amount of thyroid tissue *partial destruction* Not the total thyroid.

She also said there’s a 50% chance I’ll end up hypothyroid afterward or 50% chance I'll live a happy normal life after without any need for medication).

I have never had radioactive iodine treatment before.

So it's new to me to process.

However, my partner and I were considering having another child months before this new, because we felt the desire to expand our family. I am 38 years old.

The treatment requires waiting between six months or almost 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 with this procedure or if you had two pregnancy alright with hyperthyroidism.

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, or having bad experience postpartum etc.

Also: My partner is also 'pressing' 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. He feels concerned, if I express myself correctl.

I feel a bit lost in the process of the decision.

Thank you for your advices and opinions.

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👂👂👂👂

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 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 😫

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 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.

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

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!

Wondering if anyone can give insight on TED relative to thyroid levels at a given time. For context I have had low normal labs (FT4 and FT3) for 9 months and recently slightly lowered my dose of methimazole to 12.5mg average daily (10mg/15mg alternating), previously 15mg daily. I had labs and my FT4 and FT3 are both in the middle of range. I’ve seen a lot of information about symptoms improving when labs are in the middle. Can this improve my asymmetry? My antibodies are still positive, at 216% but trending down.

I had my TT 8 days ago and recovery is going well, starting to be able to move around in my daily routine again. I’ve been on 75mg of levothyroxine and I was wondering how long it took for people to start to feel a little more normal? When does the energy come back? I feel my heartrate is significantly improved which has been amazing but I don’t necessarily feel that instant energy that people feel after their surgery. I want to get back into working out (wasn’t allowed to for years because of my heartrate) and I’m a little worried because I still feel run down and tired..

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 .

My resting heart rate seems to consistently be between 70-82 which is good, especially compared to what it used to be when I wasn’t on methimazole lol.

Does anyone feel like their heart beats heavy to the point when you’re sitting or laying there you really feel it beating in a way that makes you wonder if it’s beating really fast and if you need to take a beta blocker? It’s hard to explain the sensation, but then I’ll check my heart rate and it’s not particularly elevated or that I know I need to take a propranolol. It also doesn’t seem like it’s beating out of sync or anything either. But, does anyone else experience this sensation? This heavier beating resonating in your body that’s hard to ignore. Do you still take a beta blocker even though your heart rate is pretty normal? Does it help?

I do have GI issues like GERD and indigestion. That would cause a pressure sensation in my chest that I feel like would also exaggerate the heart sensation. I was recently put on Pantoprazole a few days ago and most of my GI symptoms have subsided on the surface level, thankfully. I do wonder if I’m still having mild symptoms since I did just start the GI meds, and that’s why I’m having the chest/heart sensations still going on…

Hello, I was diagnosed with hyperthyroidism for the first time about 50 days ago. My T4 levels went up to 3.5, but after having a radioactive iodine uptake scan, I was told that it was much more likely to be painless (silent) thyroiditis than Graves’ disease. So, rather than starting any treatment, I was told to have another blood test in a month.

During this time, I’ve had fairly severe hand tremors. That didn’t really scare me because it’s such a well-known symptom of hyperthyroidism. However, every day my thighs have felt fatigued and as though the muscles are constantly tight or stiff. For example, I can get out of bed and walk just a little, but my thighs feel like I’ve just finished doing 30 squats. More recently, the muscles in my thighs have also started twitching or trembling.

For a while, I was really scared. But after searching on AI and Reddit, I found that there are people with hyperthyroidism who experience similar symptoms.

Has anyone else experienced symptoms like these?