I've been diagnosed with hyperthyroidism in June. They did some antibody tests for me and the one that is high in patients with graves disease was also high for me. I went to an internist who refused to tell me if I had Graves disease or not. He always just said he doesn't care about the cause of the hyperthyroidism, he just want to treat it. However I really would like to know if I have Graves or not. I do think I have it though. Did a whole lot of obsessive research about labs and symptoms and I do fit the criteria in some ways. Anyways the whole point of this post is that I've been having a lot of eye problems. I have been suffering from dry eyes, pain behind my eyes and severe eye swelling/puffiness especially on mornings. I've seen an ophthalmologist about it and he's been trying to help me with some eye drops and eye ointment. The dry eyes got a bit better but the swelling is still pretty bad, especially in my right eye. Could this be a sign of thyroid eye disease. I've seen online that puffiness is more a symptom of hypothyroidism but I'm hyperthyroidism with signs of Graves disease. I just kinda feel helpless. I'm also studying abroad, away from my parents and I don't know how successful I'll be in getting a doctor who will listen to me and take me seriously overseas. I really just want to be well. I don't want to be going through this, especially not right now when I'm all alone. But yeah, did anyone have a similar experience with their eyes. Even as I'm typing this my right eye is so swollen.

For those of you that are post TT, did you notice a bout of hair loss while adjusting meds? It’s coming out in clumps for me, and I think was triggered by stress. I’m wondering if it’s graves related now that the stress is gone. My last bloodwork shows my tsh on the stronger/hyper side but in normal range. I’m not having any hypo symptoms either. Can you lose hair if you’re hyperthyroid too? Thanks for any input!

I’m all new to this and currently on Methimazole 20 mg. daily and Atenolol 50 mg. daily. Anyone ever feel like their heart with stop when laying down? It’s the scariest experience I’ve ever gone through and I’m so scared to fall asleep and not wake up. I can’t tell if it’s anxiety or actually my heart. I see my endocrinologist in 2 weeks. I was just wondering if anyone else experienced this. I honestly can say, this has been the worst experience of my entire life.

Hey guys a few months ago I was hospitalized and diagnosed with hyperthyroidism that's affecting my heart as well I guess they didn't really explain very well just gave me thyroid and heart medication and sent me home to follow up with a DR if anyone is familiar with this would you mind telling me about your experience with this.

Hello everyone!

Diagnosed with Graves in June. Last week, my endo adjusted my methimazole dosage from 30mg a day to 20mg after starting to swing hypo. My last labs showed that all my levels are back in range except my TSH (which is now an 8) and my free T4 is slightly off.

Today, I started having slight chest discomfort and feeling like I couldn't breathe. My HR would stay normal (70-80 bpm), but my palpitations were through the roof. I was shaking uncontrollably, and I haven't been able to sleep in two days. Two visits to the ER later, I'm told that I'm simply reacting to the change in dosage as everything looks great.

Has anyone else had such aggressive symptoms since changing their dosage? If so, how long did they last and how did you manage them? I'm a girl who loves her sleep, so it's absolutely killing me that I haven't gotten more than 2-3 hours of sleep a night the last couple of days.

I have been battling hyperadrenergic POTS for about 6 years. Recently, I was diagnosed with hyperthyroidism and I suspect I have Graves due to my symptoms (I’ll be tested further in the next few weeks). Graves may explain my POTS, or serve as a major mediator to my adrenaline dumps associated with POTS. It is by far my most debilitating symptom. I’m curious if a TT helped resolve this symptom?

Hi everyone, I have graves (had a TT last year) and TED. Any recommendations for prenatal vitamins? I currently take one without iodine in it but have read the amount of iodine in a prenatal should be okay. Now I’m more concerned about avoiding biotin in a prenatal so my labs are not affected. Any suggestions/advice are welcome!

is it okay to just stick with my ent doctor? ever since I got diagnosed with hyperthyroidsm, ENT doctor is the one that is giving me meds and labs. I have little to none symptoms of hyperthyroid

My TSH level is the one that is not normal at this moment. The others are in normal level, and he's not recommending me to go talk to an endo. Should I stick with him?

TIA~

Has anyone here been diagnosed with both Graves’ Disease and MCAS?

hi! i’ve come to a point where i feel so helpless and need to come here for help or advice. I AM A 20 YR OLD FEMALE ( for reference ). so in june of 2023 i got pink eye from a family a member. i took medication and it went away but then came back a week later. i was confused because i had cleaned everything that my eyes would have had contact with and so did my family so there was no reason for me to re get it. i took the medication again and it went away again but came back. it has continued to do this until now, the present day. i have been to numerous doctors and eye doctors and have been told prescribed every eye drop and gel there is it feels like. i have had punctual plugs put into my eyes and still it isn’t helping. my eyes get all the symptoms of pink eye but it isn’t pink eye. i have had testing done to rule out lyme disease, graves’ disease and uvitits ( i have arthritis) and still nothing. i was told that i have chronic tear deficiencies and have been prescribed ziadra for daily usage twice a day. i use refresh gel and systane drops every morning and night. i am feeling truly so hopeless with this whole condition because nothing i have been prescribed or told has helped my eye issues. the only thing that will clear my eyes up is steroid drops which i can’t take daily or as frequently due to the fact it’ll become ineffective at some point. i really need some help here because im not sure what to do or who to see anymore. please help me i am begging.

Anyone out there afflicted Hyperparathroidism and hypercalcemia. I was not even aware there was a parathyroid. Any info would gladly appreciated.. Phyllis

Hi everyone! So I've been stable for a few months now and my blood tests have been moved from every month to every three months. My doctor also now only asks for just the TSH. Is that normal? Is there a reason to also regularly check for free T3 and free T4? Or should I be happy with just the TSH numbers?

His thyroid levels were extremely high. He is currently on Tapazole 10mg 3 times a day. His thyroid has finally shut down after 9 months of the medication. His doctor just prescribed him Levoxyl 50mcg once a day.

His pharmacist raised concerns on using both medications at once and said that she has never seen this done. I trust his doctor of course but wondering if anyone else uses these in combination and of course her raising a concern makes me a bit concerned. Thank you for your input.

received these results for our son today. thoughts? Concerned it points to Graves. Biggest symptom are the waves/cycles of fatigue.

Anti-TPO: 105 (high)

TSH: 0.705 (low end of ok)

T4: 1.28 (normal)

T3: 145 (Normal)

WBC: 3.1 (slightly lower than low end of normal)

Neutrophils: 1.0 (slightly lower than low end of normal)

Just a question and a bit of a rant. Have any if you had really bad PMS bloating and cramping while on Methimazole? I've been on it since February but was on a lower dose in May. I took 2.5 mg every other day and felt better. My numbers started to creep back up, though, so now I'm back on 7.5 mg. My graves antibodies are barely out of range. I now feel absolutely huge and miserable with weight gain but mostly bad bloat. While on 5 mg or more of methimazole I cramp badly starting at the middle of my cycle. I'm bloated to the point of looking about 5 months pregnant. At least my heart rate has been normal since February. I cut out sugar and am eating less carbs. It isn't working. I was overweight because I had my baby in 2022. I walk 2 to 4 miles a day and lift weights. Nothing really helps. I asked about weight loss stuff like Ozempic and Wegovy when I went to the endocrinologist. She said people with Graves disease can't take it. She said my weight gain is probably due to me entering perimenopause because I am 41. I also have Hashimotos, so she said at my age, losing weight isn't impossible but will be incredibly hard. It's depressing especially with those around me making mean comments about my weight.

Does anyone here have gi problems with their graves? I was diagnosed with graves around may of 2021. Around September of 2023 I started having a lot of constipation, stomach pain, back pain, nausea, diarrhea, pelvic pain, and incontinence. I've gone to multiple doctors and everytime they either assume in pregnant (I'm not it hurts to have coitus), or they say it's related to my hyperthyroidism and graves. Anyone else have similar experiences or issues?? I am just so tired of being tired and in pain. I've been on 10mg methimazole this whole time. I am now also on 290mg linzess, 10mg propanolol, and 40mg sertraline.

Hello! Wondering if anyone else tried this out or has any advice regarding this? Thank you!! I’m considering TT versus just doing PTU & trying to conceive.

My question for those who have had a total TT; do you still get the occasional feeling of swelling/pain in the throat similar to what if felt like prior to TT? It happens multiple times a month and hurts so much that I get a migraine from it and I just feel like sleeping all day. I don't understand why I get the feeling of swelling when the organ that used to swell is no longer present. I'm hesitant to bring it up to my endo because he tends not to listen or believe me about symptoms anyways. and if nobody here has these symptoms then I'm thinking it's not related to graves or hashimoto's (which I have also) and need to talk to my PCM instead. but I'm kinda hoping you guys say it's normal so I can just deal with it and move on from being worried about it.

I am an inherently happy person, I’ve worked very hard, pre graves diagnosis and post, to be positive but realistic, balanced, aware and working towards being better. My second to last dose change was fine at first but the anxiety got so severe and one day I couldn’t even work because of excessive sobbing. Psych Meds were adjusted and I was better for a week or so, then my methemizole dose was adjusted. Since then I have cried almost every day. Some days more than others, and on the worse days I’m entirely distraught. Today is bad. I got to work and I was fine but began to feel overly sensitive to every thing. I’m fighting the paranoia and overthinking as I type this. I’m feeling like people close to me either don’t care at all or feel obligated to care. I’m paranoid that my circle of friends don’t want me, my job I’ve been at for 5 years and have been genuinely treated like family doesn’t want me, and I just feel like a huge problem. I’m paranoid they’re all avoiding me as nicely as possible because I’m fragile and a burden. I have a psychiatrist appointment coming up, and I already called my endocrinologist. If I didn’t have my partner, I’d have to be committed lol

Just reaching out here, is there anyone who has both these conditions?

Long story short. Diagnosed postpartum April 2021, came off meds April 2022 after numbers went back to normal. Relapse Jan 2023, numbers normal in 6 weeks but on treatment til Jan 2024.

I've now been off all treatment since Jan and I've felt awful most days with all symptoms but bloods have been in range (tho numbers slowly creeping higher and higher and now top end of normal).

I've always noticed a goiter but recently developed a cold that won't go and the lump now hurts. Went to doctor today and he's referred me for an urgent scan and now I'm panicking?

I had a scan in 2023 and it showed inflamed thyroid but nothing came from it but now with the pain as well as the rising symptoms and relatively normal bloods, I'm scared it could be cancer? But Google is very sketchy on what the actual symptoms are????

Hello everyone,

In the beginning of August 2024, I went to my primary care provider to have my thyroid checked due to my mom’s nagging (she noticed that my neck was starting to resemble a goiter lump). My kind primary doctor felt my neck, asked several questions and ordered me several lab works done. These are the results:

Free T4 is 2.68 TPO Antibodies is at 120 TSH with Reflex to Free T4 is 0.010 T3 Total 301 T3 Free is 9.00

She then told me to get Thyroid US and these were the findings: No nodules is identified. Enlarged heterogeneous thyroid gland.

Right Lobe measuring 6.5 x 2.5 x 2.3 Left lobe measuring 6.1 x 2.6 x 2.3 Soon, I was prescribed 10mg methimazole and requested I do an NM thyroid uptake.

I’ve been waiting for an appointment with an endocrinologist she referred but it’s taking a long time (Idk why….my primary care provider and referred endocrinologist are both on the same floor lol) I also looked up the symptoms of hyperthyroidism and I was actually relieved to know that they were all connected for example my resting HR has been between 90-110 despite being couch potato I’ve also been losing hair (I thought it was because of the hair products I use) and profusely sweat just minutes outdoor with little activity

I will update as soon as I get my other results Feel free to comment your experiences

Hey Graves fam,

Wondering if anybody has advice on this.

I’m down to 2.5 mg (half a pill) but even that is making me trend towards going hypo so my endocrinologist says I should cut back to taking 2.5 mg for 5 days a week. He prescribed that I simply skip the dose on weekends.

I didn’t think much of it at the time but then I now I have been pondering, wouldn’t it be better to space out the off days when I don’t take my dose?

So, for example, let’s say I take carbimazole Mondays, Tuesdays and Wednesdays but then skip a dose on Thursdays, then take my daily dose on Fridays, Saturdays then skip on Sundays. It seems like it would make my levels more consistent, no? Instead of just taking it all throughout the weekday and then not taking it at all during the weekends and risk having a huge dump/change in levels.

I do intend to consult further with the endocrinologist (it’s government one, though, so waiting time is long) and my regular doctor but I’m just wondering what you guys prefer.

Has anyone else had low white blood cell count from Methimazole/carbimazole? I just found out I have it, and my endo told me to stop taking it immediately.

I have actually been to hospital before for a CMV virus I got when I had neutropenia that I developed in a reaction to Infliximab (biological drug for Crohn’s disease). So I guess it’s not that surprising.

If you have experienced this, what did your doctor tell you is the path forward? I don’t see him until 17 September (he wants a couple weeks to see how I go off the Carbimazole I suppose). Is it a change in medicine? RAI? Surgery?

Thanks 🙏

What it says in the title. I just got confirmation today that I have Graves Disease. o/ My mother had her thyroid removed before she was 40 and was on medication for the remainder of her life, so thyroid issues aren't super new to me, but my gosh, I am beyond irritated that I now have to take more medication.

I'm being treated for AF, GERD, and anxiety (my friend of 15 years). I have iron deficiency (progressed to anemia) so I was already tired upon tired every day. Now I have a new, additional reason to be tired everyday. All this means my reaction today was, "FFS, really?!"

Anyone else here just absolutely peeved when diagnosed? I have zero chill left right now and I just want pizza for dinner, a hundred cats, and half of Elon Musk's bank account. Because if I have to put up with THIS on top of everything else, I deserve the damned pizza.

Thank you for reading my rant. I just needed to vent. And say hi. Hi! I'm Angela, I'm a 44 year old Aussie in desperate need of a therapy pizza.

Hi there! Was wondering what your TSH, T4, and T3 levels were when you successfully became pregnant or started trying. What have your endocrinologists said about what levels they want in range before trying?

I recently saw an endocrinologist because of hyperthyroidism and suspicion of Graves’ disease, and he told me that my blood results indicated that I had Graves’ disease at one point and that my body regulated itself so I didn’t need any medication. My levels were never bad, just slightly low tsh, slightly high t3, and normal t4. When I checked my recent blood results that I had done for my endocrinologist on my online chart, my t3 and t4 were normal, but my tsh remained slightly low and my thyroglobulin antibodies were high. Is it possible for Graves’ disease to go into remission by itself???? 

I was diagnosed with Graves and Hashimoto’s (antibodies for both) in July after routine bloodwork showed very low TSH and slightly elevated T4 in May. In July, I started on 5mg of methimazole (M, W, F). My bloodwork 1 month later showed my TSH is back in the normal range, and my T4 is now slightly low. The assistant at the endocrinologist’s office let me know that she wants me to drop down to 5mg of methimazole twice a week (M, F). I’ll repeat bloodwork in October ahead of my follow-up appointment (2 months from now).

I’ve read through quite a few posts here where people have been on 2.5mg daily but I haven’t come across anyone on a twice a week dose. Has anyone else experienced this?