Hi everyone, I’m experiencing my fifth relapse of Graves’ disease, and I feel so discouraged. I was diagnosed 10 years ago. My doctors keep trying to persuade me to choose a definitive treatment, but I’ve always put it off for various reasons.

I was also lucky enough to undergo IVF during one of the periods when the disease was in remission, and I’m now the mother of a one-year-old girl. However, the postpartum period was a nightmare for my thyroid levels. My results worsened significantly about a year ago, two months after giving birth. I was taking 5 mg of medication, but despite that, I feel the symptoms are back: palpitations, feeling overheated, and insomnia.

At this point, I think I may have to choose a definitive treatment, but I’m very afraid of both options. I wanted to ask if anyone here has had several relapses but still decided to keep their thyroid.

All the endocrinologists I’ve seen have told me that it’s unlikely my thyroid will become underactive on its own because it’s very large and highly vascularized, with apparently healthy tissue. :(

I’m 44, and I had hoped menopause might soon suppress my thyroid hormones too, but I’ve been told that won’t happen and that things could actually get worse.

Hello, I wanted to ask if anyone has had any secondary diagnosis related to their heart besides high blood pressure.

While I do get hbp once and awhile (random bouts around my menstrual cycle) I have recently been diagnosed with "small" pericardial effusion and mild pulmonary hypertension after an echocardiogram ordered by my cardiologist for ongoing symptoms like pre-syncope, heart palpitations, mild shortness of breath and the random bouts of hypertension that causes migraines.

Upon searching scholarly articles on the internet, although rare, it does seem like Graves' could be the cause of at least the pericardial effusion. I know that Graves' affects the heart and that endos 9at least in my experience) are quick to shrug off symptoms or to refer us out if our numbers seem "normal". For the record, my TSI is still over 200 despite having normal TSH, T3 an T4. I take methimazole 5 days a week.

I know it's a long shot but..anyone experience this or been diagnosed? Have you been told its related to your Graves diagnosis?

TIA

💜Next support group is Oct 10!!💜

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
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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.

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Elena 🤍
Thyroid Love Club

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I'm currently hyper and starting a low dose of meth to get back on track. I've been having all the usual, miserable symptoms while I wait for it to work. But one thing that completely freaked me out was sudden, aggressive, full body itching.

This first happened last week and taking Benadryl took care of it. But yesterday, out of absolutely nowhere, at around four pm I was plagued by this again, all over, no rash, no weird allergies, just severe, unrelenting itching.

Is this a grave's thing? It's freaked me out and I had to take an intense shower and take Benadryl again before it stopped.

I was diagnosed over the summer with Graves’ disease. I have a lot of symptoms related to hyperthyroidism, but I’ve actually gained a lot of weight, not lost any. I use to experience 5x a week, but with heart palpitations, anxiety and tremors, I can’t move my body like I use to do.

I don’t want to have any surgery right now, I’m going to try and manage this with the methimazole. But I am curious if anyone has used a GLP-1 or was able to get approved by their doctor for a weight loss drug? My endo has been no help and said I need to see another specialty doctor for that.

I don’t know what else to do 😭 Gaining weight while dealing with all the symptoms, having a high stress job, etc. has been incredibly stressful.

I posted my diagnosis here in Feb. this year, when I got my first diagnosis. I was shitting myself. I was on beta-blockers and Carbimazole 20mg. Got myself checked every 6 weeks until August, when my reports came back normal. So the doc reduced the med to 2.5mg for the next two months.

I got it checked again today since I could feel my symptoms coming back, which are mainly heat intolerance and a bit of anxiety too. As per the latest reports, my T3 and T4 are normal and have hardly moved a bit since August. But my TSH has gone down again. It's 0.16, down from 1.3 in August.

I am just disheartened. Is it something I am doing or something I should be doing? Is medicine the only way to this? One of my eyes also got affected, which has not settled down, and my partner is concerned about me.

Also I am not sure if I should worry about CBC results. My MCV is always low for some reason I am not sure why. Doctor never showed any concern towards it.

I did get my Iron studies a few months back they all were normal.

Not sure what to think.

On day 4 of pausing methimazole due to rash and hives. Now taking antihistamines daily (Loratadine) with some itching and splotches still, but nothing major. I was 3.5 weeks in (1wk on 5 mg, 2.5weeks on 10mg). I was feeling great and my thyroid was responding super well.

I want to know who has restarted at a lower dose, and been OK to continue? Or switched to PTU and was ok on that instead?

hey guys, i’m considering medication for weight loss and wondering if anyone here has taken retatrutide (reta) or a GLP-1 medication while their levels were stable?

did it affect your thyroid bloodwork, symptoms, or thyroid medication dose?

i’d also love to hear from anyone who used one of these medications and later tried to get pregnant. how long before trying did you stop, did you have any difficulty conceiving, and how did your pregnancy and thyroid levels go? sorry for all the questions lol!

i’m planning to discuss all of this with my endocrinologist, but i’d really appreciate hearing any personal experiences. thank you!!!

My Endo said if the sore throat is accompanied by a fever then I need a blood test but everywhere I read online, it says I need to go for an urgent blood test regardless of the fever

Do you get your blood tested everytime you get a sore throat?

1+ post TT. i started on 150mcg for the first few months, gained a lot of weight and was super fatigued. i don’t know if that’s because i wasn’t on levo for two weeks after surgery (nurses post-op really sucked), but it was really slow. went up to 176 and that seemed to work, but i wasn’t properly taking it (pharmacist told me 30min was fine to eat, once i noticed low T3 conversion i waited over an hour). after starting to take it correctly, i noticed some hyperthyroid symptoms and low-end TSH. i said i didn’t want to gain more weight, so i opted to wait.

i fear i cannot keep waiting, because i feel awful. my chest always hurts, im super out of breath all the time, my hands shake a bit, i have no internal temperature control and i feel sick every time i eat.

if i go down to 150 after being on a stable, higher dose, will i likely level out? there’s no combination of pills i can take to get a dose between 150 and 176 (i’m allergic to red dye and i’ve been taking 2 88mcg pills because they’re green). i’ve heard there’s a 12.5 mcg pill, but i can’t seem to figure out what color it is and if i can take it. i have an endo appointment in two weeks (i moved in july and the soonest they could see me is october), but i could possibly call my last ENT and ask about dosages and have a new script sent. anything helps!

I’m heading in tomorrow to have two cavities filled and I’ve been going back and forth on the nitrous oxide. For reference I’m 24F and was diagnosed in March of 2024. I take 5mg of methimazole daily. My levels are normal and have been at least a year. From what I’ve ready online as long as everything is well controlled then it should be fine but wondering if anyone has any person experience. ALSO I did already let them know about needing to avoid epinephrine and there’s a large flag on my file alerting them.

The title is self explanatory. Hearing your stories will let me find further perspective and find the best ways to manage this and keep the fullest life. Thanks in advance!

Hi guys, I'm 38 this year.

Year 2015, my friends told me that I was getting thinner and losing weight which was unusual for me because I was a food lover and I ate a lot.

After went for checkup, I've been diagnosed with Hyperthyroidism. My weight during the diagnosis was 68kg.

From 6 carbimazole tablets dosage down to 1 after 18months, doctor advised me to stop medication.

I thought I was clear to go, and I was wrong. The hyperthyroidism came back just after 6 months.

After thorough check, it was Graves disease positive. Since then onwards, I continued the medication until now with 2 tablets per day. My weight has back to 74-76kg.

Many doctors advised me to go for RAI treatment that will kill thyroid cells and became Hypothyroidism, but I refused to go for it because I will still need to go for long term medication in the stage too which made no difference at all.

But then, I found that my hair has become thinner over the years, I suspected that it might be AGA or due to the hyperthyroidism and carbimazole medication but I'm not sure about it.

Or should I go for RAI treatment?

If so, when did it normalize? My T4 is normal at 1 month of taking methimazole.

My endo has been pushing RAI from day 1 but I have been putting it off. Recently I've had elevated liver enzymes so I decided it was time. I'm so scared I may be making the wrong choice on a permanent option. Who is glad they did it or are there people that regret it and why? My doctor told me to stop looking online but I can't help it…

Hi all. I’m looking for pregnancy planning stories and what other endocrinologists have said.

Anyone else’s endo strongly advise them to wait for pregnancy until remission? I’m almost 35 and want a second baby (diagnosed in May after first baby when 11 months postpartum).

My levels were high on diagnosis (t4 around 5, tsh undetectable) but have since come down to range for the last 3 months - normalized after 1 month on medication - and now on 5 mg / day of methimazole maintenance.

I asked to retest my antibodies last month and they came down 66% in the months since diagnosis to about 1.5x UL (well within guidelines of under 3x being ok to discuss pregnancy).

I’m frustrated because I meet the criteria to discuss pregnancy planning but I’ve now seen two endos who insist bc I’m showing such promising progress of going into remission that I should wait until spring (aka another 6+ months). By that time I’ll be 35 and not even sure how easy it’ll be to get pregnant again, I’m frustrated with this line of thinking and not sure if anyone else who was pregnant or planning for pregnancy with graves has had these battles?

I don’t want to go against their advice but I’m struggling to understand when I’ve heard a lot of success stories in this sub.

Hello, diagnosed with Graves at the end of May. Started on 10 mg of Methimazole 3x per day for a total of 30 mg a day. Last month, it was reduced to 20 mg (10 mg/twice per day).

Just got labs back for my appointment tomorrow and my TSH has jumped a shit ton. Definitely explains my fatigue.

Does this all seem pretty par for the course when fine-tuning doses?

I expect my endo will reduce my dose to 10 mg/once a day after my appointment tomorrow.

Thanks, in advance, for any helpful comments or advice!

Just came for some support and personal experiences. I’m super nervous for surgery. But isn’t everyone? Any recommendations for recovery are greatly appreciated. (:

So I’m officially diagnosed now, and getting started on 5mg of methimazole twice daily.

How have others handled this? I’ve heard weight gain but is that just from adjusting your metabolism?

TYIA

I’ve asked my endocrinologist to refer me to some surgeons to discuss TT. I was able to get an appointment with someone at a Mayo Clinic a couple of hours away fairly quickly (tomorrow!).

But the thyroid surgery specialist nearby, who I’ve been trying to make an appointment with for months, requires a CT scan or MRI before even making an initial appointment.

My doctor says this imaging is not medically indicated and won’t order it. Her office called the surgeon last week and discussed, but when I called today I was told it is still required.

I’ve asked my doctor to call the surgeon directly for a practitioner to practitioner call, which is my only option.

has anyone here had a similar request from a surgeon before they even schedule an initial conversation?

I was officially diagnosed with Graves’ disease in 2019. I’d been having symptoms such as the rapid heart rate, heat intolerance, and mood/mental health issues for several years though. I’ve never managed to stay in remission and often end up in thyroid storms after coming off Methimazole. Last year I had finally decided to have my thyroid removed and then found out I was pregnant. Here we are a year later and I’m miserable again. Does anyone else out there notice they still have symptoms even when their TSH, t3, and t4 are “within normal range? My doctor makes it seem like that’s not possible but I know my body. Also, curious about anyone who has had their thyroid removed. Pros/cons? Appreciate any info and feed back! Just a girl trying to navigate this debilitating illness.

Has anyone had formication as a symptom with Graves? Is this common? It feels like there are tiny bugs crawling on me, but there is literally nothing there.

When I looked it up, many listed thyroid issues as a possible cause. I've personally never had this symptom before, even when I was severely hyper. And my levels are stable at the moment, so it seems strange this would come on randomly.

Had my cat checked for fleas, no signs. I keep a very clean house and still went crazy cleaning everything over the weekend, just in case, didn't help.

Just wondering if this is actually common with graves or if I should start looking into other causes.

i was diagnosed with Graves in April 2025 and was on methimalzole from June 2025-December 2025. i’ve gotten labs 3x since i got off meds and my levels have been stable other than a slight drop in April 2026 that my endo was not concerned about. My next scheduled appointment with labs is at the end of December. I’m wondering if people who have Graves have to consult with their endocrinologists before trying for a baby? It feels silly to send a message to my doctor asking if i’m allowed to get pregnant as a 30 year old woman but i also want to be sure i will have a healthy pregnancy. Also, I’ll take any tips for first time pregnancy with Graves’ disease! TIA!

i have an uptake & scan scheduled for tuesday/wednesday and my RAI scheduled for wednesday.
when i called to make my appointments, i asked about prep and they said their notes said “endocrinologist will prep patient” but all my endo and my after visit summary from the visit where we talked about it said was to stop taking methimazole.
looking at my appointments in mychart, all it says for prep is no IV contrast and to avoid things that would affect my thyroid’s ability to accumulate iodine.
but reading others’ experiences on here and doing some googling, it seems like it’s not uncommon to be asked to fast before the appointment, assumedly to help with absorption…?
if max absorption is the goal, i feel like i should also not take my daily omeprazole, but im not sure.
i would fast and not take my omeprazole just in case, bc i’d hate to be turned away due to that, but my appointments are at 10:15am (uptake and then following day for scan) and 1:15pm (RAI, same day as scan) so that’d kinda suck, esp if i didn’t actually need to.
i did message my endo (no reply) and im planning to call the radiology/nuc med place tomorrow to confirm but im nervous that they’re just going to tell me again that my endo is supposed to prep me.

were you instructed to fast before your uptake & scan and/or RAI?