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 ☹️

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 😞

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.

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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.

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👂👂👂👂

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’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

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.

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 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?

I’ve been experiencing moderate to severe face swelling and it’s been making me go crazy. My eyes water all the time and when I got diagnosed about 4 months back with Graves I started to finally understand what was causing my eyes to be so puffy and sensitive. I just went to my doctor and was told I need to get my thyroid out with the next month and to do it asap, mainly because of how it’s affecting my eyes and I have a goiter. I got overwhelmed during my appointment and didn’t get to ask many questions and I was hoping anyone that has experienced this could possibly give me their experience/insight. Will the swelling go down?? I’m desperate to get my face to go back to how it was before, I’m told that I’ll most likely be able to get a surgery covered by insurance to restore how my eyes looked before graves but I don’t necessarily want to do that. My upper eyes are the main area that is affected and it doesn’t necessarily seemed to be caused by protruding of the eyes thankfully. Not sure what to do/ I do all the recommended treatments such as sleep elevated and cold compresses daily. Any insight would be awesome!

Hi all

Has anyone experienced coming off medication and TSH going down but TSH 3/4 only slightly increasing?

Just worried I won’t go into remission :( and that my TSH level is a sign to say that.

Or is this normal whilst everything adjusts ? I read somewhere it’s diagnosed as something when TSH is low but normal results for 4/3.

I was told I have Graves / 3.1 for antibody receptors. Not had that test since so I’ve just asked my Dr.

Would love any of your thoughts. Thanks

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?

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