I was diagnosed with graves but seem to be gaining weight. Is anyone else having this issue? Any suggestions from anyone who has combatted the weight gain?

I'm 33 and was diagnosed with hyperthyroidism when I was 30. Found out in 2023 that I have graves disease when my doctor requested me to have an Anti-TPO. I am taking Neomerdin once a day. Is anyone here with graves disease for years now who's goiter is not enlarged? What vitamins and medication do you have? Thank you.

I ask this because when I got diagnosed and went through follow-ups, my doctor never mentioned any type of diet. Although he did say that I should avoid caffeine that may elevate heart rate.

So have any of you tried eating foods that contain iodine (it's not avoidable, I know. I just wanna emphasize on this part) and noticed any changes that worsened your symptoms and levels? Or has it never really made any significant impact regardless of what you ate? Thanks!

Do they keep you on methimazole after you reach remission? I got my lab results back, and after being on a small amount of methimazole since February, my antibodies are no longer out of range and my T4 and T3 came back in middle of the range. TSH remains nearly non-existent, but it has always been like that even for years while my T4 and T3 remained normal. Apparently, my body is very responsive to methimazole, and I don't want to go hypo.

Bonus points if you’re in your 40’s but I’d love to hear from everyone. Pre-thyroidectomy, I could set my watch by it. Now I’m having a really long cycle (last one was 46 days) followed by a really short one (13 days).

TLDR: Doctor has dismissed all my symptoms as "ongoing tiredness". How do you deal with dismissive doctors?

I recently had to apply for a fit note to take with me when I apply for benefits and the doctor has filled it out the way one would for the flu and not an autoimmune condition, whilst boiling all of my symptoms down to "ongoing tiredness". I plan on getting a second opinion but I never know how to deal with dismissive doctors in the moment.

For context, I made the difficult decision to leave my job at the end of August due to the fatigue, brain fog, and dizziness making it impossible to complete my work and my symptoms keep getting worse as time goes on. I had some blood tests to check all my thyroid levels and vit D levels and, whilst the vit D was low, I've been told my vit D levels were low. They've made the decision to try lowering my dose of carbimazole again and put me on supplements, this is all fine.

What hasn't been fine is that the doctor I've dealt with recently for the results and the fit note has now bundled all of my symptoms into one thing and downplayed all of them as "ongoing tiredness". I didn't register this when discussing the results and treatment plan but was absolutely gobsmacked when the same doctor later filled out my fit note. He's put a limit on it for 4 weeks (this is normal for first time notes), but has also put down that I won't require reassessment once that time is up, and my only symptom is the afformentioned "ongoing tiredness".

Aside from asking for a second opinion I'm at a complete loss for what to do and was wondering how other people deal with dismissive doctors.

https://preview.redd.it/yldkc342xbnd1.jpg?width=800&format=pjpg&auto=webp&s=65f9ac69629f60f5f5732eac2b418b782c04931e

Two nights ago, while I was fast asleep my Fitbit woke me up in the middle of the night with an alert that my heart rate was high - it was between 140-150 for about 15 minutes and then went back down to 75-80 the rest of the night (my resting heart rate usually hovers between 64-68 … the last two days it’s been closer to 75).

Has this ever happened to anyone? Should I be concerned? Could this just be my fit bit malfunctioning?

I had my levels (TSH, T3 and T4) tested on August 22nd and everything came back in normal range.

Would love any thoughts and/or advice?

Hi guys! New to the sub here and just got my labs back. I had my first baby back in May and thought the hyperthyroidism was from postpartum. Went to the endo and she diagnosed me with Grave’s just based on my high heart rate before even seeing labs. So I finally got them back (see below), and she is recommending I do a couple months of propyl. and then get RAI. While there I also got an Ultrasound also says it is benign and measuring 0.4 cm. I guess I’m looking for reassurance that it’s gonna be okay. I had no idea it was gonna be this serious:( Can you have graves without lower antibodies? TSI: <.10 thyroid peroxidase AB: 18 t3 total: 297 t4 free: 7.21 tsh 3rd: 0.005 t3 reverse: 62.1

Did anyone else with graves in university get accommodations for classes/exams? I had to take medical leave last March when I got diagnosed and I’d really like to avoid that happening again. I have a meeting coming up with student services at my school and was hoping to get access to lecture recordings or other course material in case I’m too sick to go to class. If anyone else has experience with this I’d love some advice.

Hey everyone. I got rai therapy at the end of July. My t4 level was over 5 and tsh obviously undetectable. I just went back for more blood work before my follow up appointment next week, and my t4 is above 4 and tsh still undetectable. They did not test t3. Is this normal? How long does it take for levels to start dropping / evening out?

hello! I had my TT 8 days ago on the 29th of august and my surgeon told me there were no complications and my calcium and PTH levels were fine the night of the surgery and the day after when i was discharged. but on the 2nd of september i started getting muscle cramps and twitches and my blood tests showed my calcium was low and i’ve been prescribed two weeks of calcium twice a day. the meds last for about 7 hours but then theres a gap between the first and second dose where i get cramps and each morning i wake up to painful cramps and twitches. so im just curious if anyone else has had calcium issues with intact parathyroid glands and how long they lasted for because im hating it thanks!

as the title says, has anyone had an increase in heart arrythmia, especially at night? Like it took my FitBit 3 tries last night to read normal heart rate (without saying that anything was wrong), while I'm watching the skips and extra beats right in front of my eyes.

We are titrating my dose down (15 mg of methimazole down to 12/10mg) and I don't feel crazy hyper but I do go for my monthly labs next week and am definitely curious as to what the results will be.

Hi All,

Has anyone gotten a blepharoplasty while in active treatment for hyper but still hyper? Is this medically sound? Or is it best to wait til my numbers are all in range?

I'd like to get some fat accumulation removed around the inner corners on my upper lids, a bit of fat removed from the outer corners of my upper lids and have the fat under my eyes smoothed out. This is all what my plastic surgeon suggested would be beneficial and what we aligned on. I've had substation swelling from graves that has caused the skin on my upper lids to be looser and it's really bothered me.

I’m really frustrated I feel like my cheeks are so big/puffy ever since getting this disease. I’m 23 and I feel like I look 40. A few people told me I look 18 (not sure if they were just trying to be nice and lying to me) but I personally can see a difference in my face and it’s upsetting. I don’t know what to do. I already have naso-labial fine lines & my eyes are constantly irritated with red blood vessels in them and darkness under my eyes.

What can I do to look like myself again? Or atleast feel better about my face changes?

I’ve had RAI early July (my second time and immediate success within the 1st month). I’m currently on day 14 of Levothyroxine (default 100mcg as they work out what my body needs) and I’m feeling a bit of hyperactive symptoms consecutively the past 3-4 days. I’ve been told by the pharmacist who issued me the meds to stop them if I feel heart palpitations or unwell.

My question is, if I do stop how long do I stop for and when do I start again. I’m not due a blood test till another 2 weeks but I’m worried I’ll mess up future blood test results and observations whilst doing so. Has anyone’s doc advised them on what to do? Or anything you decided on yourself, like how badly you must feel until you stop the meds?

Super annoyed! 😠

4 months without any levothyroxine and my TSH is still non existent, FT4 slightly over range, and FT3 only just within range but at the very highest end of the range. Considering the margin of errors in blood tests, this could easily be considered as still slightly over range too.

TPO and TGA still above range.

At this point I am looking forward to my TRAB test for more insight. Though, I presume this will be positive anyway.

My symptoms are suggestive of both hypothyroidism and hyperthyroidism (typical!). I don’t know what to think. Is this still the so called ‘hashi swing’? And, even if so, is there a better way of treating this period rather than just waiting it out? Just hypotheticals.

For context:

-diagnosed sub clinical hypothyroidism around a year or so ago

• started levothyroxine (did not have a good time on this),

• free levels spontaneously started increasing and TSH non non existent even with decreasing dose of levothyroxine so decided to stop

And, here we are.

Wondering if I’ll be better if starting LDN to cope with the symptoms while my thyroid is so unsettled. I think Roseway Labs prescribe this? I am in the UK.

Hi everyone, I'm 36 and my sweet angel baby who is now four months old triggered my Graves. I have felt awful for months and assumed it was just tired from a newborn, my levels were wild and I've now been confirmed Graves. The endocrinologist started me on Methimazole but now I'm nauseous all the time, much worse in the afternoon/evening. I've been taking Methimazole in the mornings with food and before bed with food.

Any other tips?? Maybe this is just the "getting used to it" part??

Hi everyone!! im a 24 y/o female who has been having some symptoms of hyperthyroidism (sweating, increased heartrate, hand tremors, insane appetite)

Family History: My maternal AND paternal grandmothers had Graves and had took the radioactive pill that kills your thyroid and now takes synthroid.

August 2023 physical: TSH = 1.313

August 27, 2024 physical: .834.

September 3, 2024: TSH = .458 (done again by a hematologist who i was seeing for help with diagnosing other possible autoimmune issues). (.458 is low and out of the range of the hematologist who has it as .55 - 4.78) This is a pretty big drop for 1 week, no?

Do we think that .458 warrants a visit to the endocrinologist, given my family history and the large drop in TSH levels only after 1 week?

So I'm in a really strange situation and I'm trying my best to figure out how to help my mom in regards to graves disease she was diagnosed with about 2 years ago. My mom is having a really hard time lately and we believe it's in due part to her graves disease. She used to be medicated for it but she stopped cold turkey when she lost insurance. In addition to this, she refused the surgery to remove it because of her and my step father's religious belief they don't believe in removing organs and honestly it's hard enough to have convinced her to see her Dr's when she did have insurance because distrust in their community towards Dr's- they think they can pray it away. Without going into a whole rant about that- she was at least medicating herself back then.

I guess my issue is I didn't do a lot of research or help her back then because I trusted she would just follow her Dr's orders. Well now she's having a LOT of health issues and they are all symptoms of graves disease. She can't qualify for any government Healthcare or ACA because her husband is very wealthy even though she doesnt work, being married nullifies that fact that she cant afford it herself.(But again the religious circumstances they don't really super believe in it anyways). I'm just not sure what can even be done anymore to help. Are there any natural remedies to help lower her thyroid hormones?

I have the opposite problem and I personally suffer from hypothyroidism corrected by levothyroxine so I don't really have the knowledge to help her

I’m just curious, I’ve had a really bad flare up on my face of very hot skin and very itchy. I’ve got no spots no rash, it’s so painful I’m having to take pills every four hours to take it away. Has anyone else experienced this? It’s not hives, or an allergic reaction. It’s only on one side of my face 😫

I’ve been stable on 200 mg levothyroxine for +5 years after RAI and a long battle to stabilize. I just got my recent lab results and my thyroid is all of a sudden high again. Any thoughts on this? Has this happened to anyone? I don’t understand why after so many years the medication would make my thyroid go high??? I have all the symptoms too except weight loss (which is a bummer lol).

So, I knew that getting again my old fitness tracker would cause obsession 😃.

Two weeks ago I started monitoring my HR. And it was low!

Resting average 55 Sitting also would go 60/80 Standing <100 Walking 90/105 but often lower side (slow walking)

I was even concerned to be hypo.

Now since few days my resting heart rate avg is still 58 Sitting 70/85 But walking goes from 95 to 120 !!!

What happened is:

8 days ago I got a COVID vaccine 7 days ago I had an oral surgery I am still in pain high stress I can't sleep super anxious waiting for the results. I can't eat much because of the stitches pain+anxiety.

But also 1 month ago I halved my thiamazole from 5mg to 2.5mg because my TSH was still hyper but t4 went hypo on 5mg.

I have my blood tests in 18 days. I want to give enough time to the change of med to show the effects.

I am not convinced because this heart rate change coincided with this crazy high anxiety moment+ post vaccine. Or maybe I am going hyper again :/ Or both.

Thoughts? Be gentle I am super stressed 🥹

I will not go running and I hope it's not too high to walk around with a little higher heart rate? If I can avoid beta blockers for now I would prefer because the resting hr is 58 and at night I saw it going almost 45 ..

(I had a in depth cardio check one month ago where she saw elevated heart rate with exercise, I was at the beginning of meds + I have anemia.. all was fine).

As many of you, I have been struggling with hair loss for a while. Have you tried regaine (minoxidil) or other treatments what worked out? As I was about to buy minoxidil from the pharmacy, the pharmacist told me that if I have graves nothing will help unless my hormones get back to normal.

Last week I went in for a ct scan for my digestion. No one told me this would include the dye contrast iv. This is my first time getting this type of ct scan. I wasn't able to read up on the side effects for the dye contrast before hand.

After feeling like garbage for days and having a higher than normal heart rate, I read up on possible side effects for graves disease patients. According to PubMed "Patients at risk of developing thyrotoxicosis after contrast medium injection are patients with Graves' disease and patients with multinodular goiter with thyroid autonomy." Also they note, "compromises diagnostic thyroid scintigraphy and radio-iodine treatment of thyroid malignancies for 2 months after administration of contrast media."

Hopefully if you need that information, it gets to you. I feel like I have to be my own expert/advocate when I go to the doctor. It shouldn't be this difficult.

Luckily my symptoms are slowly improving. It just feels like a huge set back because I have been in remission for a little over a year. I still have my thyroid and never did rai. My treatment was methimazole for three years.

I posted some days ago and just wanted to give a little update.

Now that I'm at university, I had to discuss with a doctor about my treatment plan going forward as I only have 1 month worth of medicine. Luckily there is an on campus doctor. I brought all my lab work to her, and she confirmed that I definitely have Grave's. Brings me a bit of peace as well as sadness. No choice to accept this I guess. But now I need some tips. I've been having some severe brain fog and fatigue. I'm worried this would really affect my studies. I'm a big perfectionist. Like it's severe. If my grades suffer because of this I think I would shut down really. Does anyone have tips on how to combat this. I'm going to get Vitamin B and D supplements, as well as magnesium. Not much of a gym person but I've started taking walks around campus just to keep me moving. Trying to drink more water as well. I really really really need to get through this. I've studied while having ongoing mental issues but this is on another level. It feels a bit out of my control

If I have graves or TED I don’t want it to be missed by an incompetent optometrist. Ugh 😞 need advice please

Hi, everyone. I just got diagnosed with hyperthyroidism - believed to be Grave's disease + Hashimotos since my thyroid is not enlarged nor does it have nodules, but it does have scar tissue, and my free t4 was high alongside a basically non-existent TSH. I got blood draws done today to confirm both diseases, so I'm waiting on those results to confirm for sure.

I met with my endocrinologist today to discuss the treatment plan, and she is planning to start me on 30 mg of methimazole for a month and then taper down to a maintenance dose. I asked about side effects - particularly weight gain as I've been struggling to lose weight this year and working hard to do so and the thought of having all that work undone is devastating for me. She was very dismissive about this concern, saying something about how I just need to have lots of protein and build muscle or something. She went so far as to imply that the thyroid doesn't play a huge role in weight gain/loss. Then she said the only side effect I should expect from the methimazole is a "wicked sore throat". I was surprised by that since I've only heard of that being a common side effect for a TT during recovery.

I've since looked it up and it appears that is, in fact, NOT a common side effect and is actually an indicator that you might have agranulocytosis. I don't know what to think anymore because of these mixed messages - thoughts?

I do plan on seeing a different endocrinologist since I really didn't like this one, but that might not be for a couple more months, and I'd like to start treatment ASAP. Except now I'm nervous about starting it with an endocrinologist that I don't trust, especially if I get a bad side effect that she just says is normal.

TLDR: Endocrinologist says getting a bad sore throat is normal when starting methimazole. Is that true?

Bonus points for anyone who has success stories of stabilizing and treating their thyroid issues and having long, healthy lives, as I am really scared and sad to be facing this diagnosis.