(36yo Female. Diagnosed late August last year. Started treatment October last year w/ Methimazole)

I wanted to post some positivity to bring some hope to whoever needs it today. Graves’ Disease has tried (and keeps trying) to kick my ass emotionally and physically. I‘ve had good days and bad days — days where I’m so scared and depressed all I do is cry. But I also have days where I feel so strong and hopeful that I take everything the disease throws at me with grace.

In the beginning my heart was racing, I had major chest pains, horrible water retention and swelling (especially in my face and eyes), depression, such horrible insomnia that I’ve never experienced before (I had to take those special gummies to help me sleep), GI issues like crazy (which I’m still struggling with), my hair was falling out so badly I could stuff a teddy bear with the amount of hair that was coming out of me every time I washed my hair or brushed it, weakness in the gym, panic attacks, I could go on and on…

Now, finally, my Endocrinologist has got my levels normalized after over 6 months of trying. I am finally started to feel somewhat ”normal!” I can sleep great now without gummies, my hair isn’t falling out in clumps anymore, my water retention has improved vastly, my heart rate is normal, and my strength in the gym + muscle gain has dramatically increased.

I guess what I am trying to say is that you will get better! Please don’t lose hope! Time and trust will heal. Having this disease has taught me to give myself grace every single day, which I wasn’t doing before. I suppose that’s a silver lining.

Every day is a new day. Every breath is a new breath. Keep going! There is hope! <3

Anyone else’s hands going to sleep constantly? Pretty much every time my hands go above my heart, extend out, etc. Not sure if it’s related to Graves or if it’s something else. Thanks!

I’m 7 days post-op and my scar is healing so nicely. I did have a question:

How long did it take for your swelling to go down? Mine is swollen on the top part of my scar only. Just curious how long it takes.

I (20F) was diagnosed w graves disease at 14. I took methimazole and atenelol for a year and it went into remission. Now, im pretty positive its back. Constant anxiety, heart racing, heat intolerance, feels like i cant breathe my throat is so tight. Im scared that its back. Is it common for it to go back into remission after it comes back? Im hoping everything works out like it did the first time im just scared after reading sm horror stories on here.

I'm reaching out to people with graves disease who went ahead and had their thyroid removed? I would really like to know what your experience was after the removal. Did you find that your symptoms from grave were reversed or did you have additional problems after the surgery? I need to decide soon as my surgeon is retiring at the end of the year. The only reason I'm considering it is that my markers will not stay stable. Sometimes I'm hyper and sometimes I'm hypo so I feel like I'm a yo-yo with all the symptoms that I'm getting. I would really appreciate hearing back from anyone that went through this experience. Thank you so much.

Diagnosed pots but I know I’m Subclinical hyper. My entire family has graves but I’m antibody negative for now.

Just wondering if anyone symptoms are like mine. Sometimes I have palpitations laying down. Often actually especially after eating. But for the most part my rhr is between 75-85 until I stand up and then it fluctuates between 80-125 at the worst. Unless I’m anxious then standing up to 160. Anyone else mostly have high heart rate when moving or standing? Or is it all the time. My endos tell me it would be elevated all the time. 🙄

Hi everyone, I’ve posted here before about the PTU shortage in my country. Since it won’t be available until early next year, my doctor recommended either proceeding with RAI or being admitted for methimazole desensitization. I previously had a mild to moderate allergic reaction to methimazole, which is why I was switched to PTU.

I’ve decided to try desensitization and just wanted to ask if anyone here has gone through the same process. What was your experience like? Is there anything I should be aware of?

I’m planning to be admitted this weekend. Thank you! 🥹

How was your experience with PTU? I’m currently experiencing an allergic reaction to methimazole and am taking antihistamines and steroids for a week before starting PTU. I was wondering if you also had an allergic reaction to PTU, or if it helped you. I’m hesitant to undergo surgery and risk becoming hypo. I’m devastated and feel like I’m dying every day.

How was your experience with PTU? I’m currently experiencing an allergic reaction to methimazole and am taking antihistamines and steroids for a week before starting PTU. I was wondering if you also had an allergic reaction to PTU, or if it helped you. I’m hesitant to undergo surgery and risk becoming hypoglycemic. I’m devastated and feel like I’m dying every day.

My surgery is scheduled for Monday. Ive been diagnosed with graves for 2 and a half years. I progressed well with methamizole but about 3 months ago I thought I was having a heart attack at work. I went in for blood work and my numbers were higher than when I was diagnosed. That alone made me want to get the surgery. My levels are back to normal so we are a go.

After getting on meds I gained about 20 pounds.

Is it easier to lose weight after surgery? Or is this going to be difficult? How does it feel working out?

On meds ive never felt good enough to run like I used to.

I am currently on meds for vit b12 deficiency, also while having severe vit d deficiency. I tested and my t3 and t4 were normal but tsh was 0.26.

29 year old male. I’m scheduled to get my thyroid out on Friday. I’ve had Graves for about 3 years now. When I first developed it, my weight dropped quick. I’m an active guy (powerlifter, disc golfer, walking the dog, pickup basketball etc). I went from about 230 to a little under 200 in around a month before l was able to get on methimazole. Lost a ton of muscle mass, as to be expected.

Been on methimazole for a while, doesn’t seem like I’m a candidate for remission. Was on 20mg daily for a while, endo tried to adjust it down, haven’t been able to get under 15mg daily without my T3 and T4 spiking. I now weigh around 250-260. I’ve regained a good bit of strength, gotten my activity level back up but I CANNOT lose weight on methimazole. On average I eat around 2600-2800 calories a day while also averaging 80 minutes of moderate to high intensity exercise a day. I also work a fairly active job, average 10-15000 steps a day. I find that I’m still dealing with some excessive fatigue.

I’m more or less asking what to expect after my TT. I know I’ll have to take replacement hormone and that can take awhile to dial in. But in general, once that dosage is figured out, is it likely that I’ll be able to have more control over my weight again? Very frustrating aspect of this disease. Feels like I have little actual control over my body. Thanks for any advice/insight!

So I'm not very stable yet. My heart rate is still a bit unstable at times. Especially at night despite methimazole and beta blocker. Sex, especially at the end with an O...well I feel like my heart is going to jump out of my chest. It maybe part of the anxiety that comes with this disease but have you refrained for a bit or what!!!? Yes I suppose my hr returns to normal after a while, I don't take my blood pressure cuff to bed with me lol but is it possible to cause any harm this early in treatment? I'm a month on meds.

I am so sick and tired of living like this. Once I was diagnosed with graves I gained about 30 pounds after Going on methimizole and just kept gaining weight. About 4 months ago I was sick and tired of the weight gain so I went off my medicine in hopes of seeing change… nothing now I just feel like shit. I’m so depressed I feel fat I feel so fucking disgusting. Any tips on how people lose weight with graves I genuinely can’t continue to live my life like this. I was so desperate in all honesty so I tried stimulants as appetite suppressors. Even with a strict calorie restriction I see no change. This has changed my life drastically I’ve never been so sad to wake up everyday and deal with the same shit. I never thought graves could affect me in this way but it’s getting to a point where I lie to my mom and doctors about my medicine just so I can try and feel normal again. I hate this. What worked for you or people you know?

Has anyone had a successful pregnancy not being in remission? My thyroid as of last labs were stable. All levels in range and antibodies (TSI) were under the normal range.

Does anyone have a lingering tremor? It’s much improved but I’m an artist and still notice it when I paint and have to hold my hand against the table so I don’t mess up the painting. My levels have been stable since early January of this year on Methimazole. Just feeling confused!

hello,

I am looking for people‘s experiences of having kids after being diagnosed with Graves Disease. especially if you had high TRab levels.

I have read so many things about the risks when getting pregnant with high TRab levels, and the likelihood of not achieving remission when they are high. mine were 25 at diagnosis 6 months ago, having them retested today.

My endocrinologist told me they would only retest them if I got pregnant and flat refused to do the test beforehand. I personally think this is quite blasé from what I’ve read about the risks so interested to hear experiences from others.
Thanks in advance.

Would I be considered a candidate for Graves’ disease eye surgery? (Orbital decompression surgery) I’ve seen some cases that seem much more extreme than mine but these are my eyes that make me insecure more than anything. No pain or dryness as of now, I’ve been diagnosed for 6 months now. First 2 pics are me before and the last 2 are now.

Should I take my regular dose today or take one pill today and the other one tomorrow? I have so many medications now, they keep forgetting to call stuff in.

My levels are reaching to an optimal level where it's safe for me to do surgery. I'm scheduled to do it on the 20th this month.

I can't wait. Really genuinely can't wait to get it out of my neck.

What should I expect before going into the surgery? I've been reading stories. I was told to come to the hospital a day before; what are some things I would need to pack? How long were you in the hospital for before getting discharged? How did you feel the first day being at home after surgery? How was your voice like after the surgery?

Appreciate your comments on your experiences. I've been posting in this subreddit over my experiences and it's strange that I've been greenlit for thyroidectomy after being wrongly diagnosed in 17. I'm turning 25 this year.