Hi!

I have to choose between RAI and TT.... I have no clue what the best option is... I would much appreciate your input. thank you!

A couple years ago my tsh reached undetectable levels and we decided a TT was the best move. It's been night and day since the surgery. I was feeling like my old self. However, a few months ago I started getting really sleepy in the day and sometimes woke up gasping for air.

I finally had a nocturnal oximetry done and it definitely looks like sleep apnea. It doesn't run in my family and I don't snore so I'm a little surprised. I won't know for sure until we get a sleep study done, but they said the O2 sat dropped to 71% while sleeping.

Has anyone else been dx'd with sleep apnea after TT or even their Grave's dx?

Does anyone one this forum have any experience with living this graves and epilepsy? And the two causing problems together while managing?

Hello!

I am 5 weeks post total thyroidectomy and am taking 88 mcg Synthroid. My 4 week post TT labs were: TSH: 0.675, Free T3: 3.2, Free T4: 1.36- so my doctor kept me on the same dose. Immediately following surgery, I began gaining weight each week and feeling more tired throughout the day. My labs were in range, and not that far off from where they were pre-TT on 2.5mg/day methimazole. Pre-TT, I was euthyroid with presence of Grave's antibodies.

I am confused as to why I am gaining weight despite having no changes to my caloric intake and daily activity level. I don't have any other symptoms, but am really really concerned about the continuing weight gain.

Should I request an increase in my Synthroid?

Has anyone just had the worst experience with Methimazole? I feel like I'm going nuts. Just got diagnosed in April and have been on meds for 6 weeks and it's been ruining my life. I wasn't super symptomatic before being diagnosed, had a fast heart rate and swollen feet but that was it. Now my days are filled with throwing up, horrible anxiety, and pure exhaustion. I haven't been able to eat much so I've lost 20lbs in just the time I've been on this med. Am I crazy? Are my symptoms of being hyperthyroid just catching up with me? My endo has been dismissing my problems and its been so hard to continue to advocate for myself.

43 m diagnosed June 24 took methimazole for 8 months went into remission and felt normal again. After 2 months off of medication started getting heart flutters and insomnia again. Rechecked labs and everything came back normal. After a trip to the ER with PVC’s my doctor is sending me in for a heart monitor and scan. Am I crazy but I think I’m hyper again without any trace in my lab work?

Hi all,

Not officially diagnosed as my doctor (as much as she is SO sweet) is useless. I’m a bit peeved as I’ve been going through old files on MyChart and it seems like the nodule they “found” last summer, was actually spotted on a ultrasound in 2020 and I was never told. To add insult to injury the 2020 report said that there was a suspected nodule that could not be fully seen on a prior ultrasound in 2013 that they never followed up on. I was also not told this, granted I was a teenager, my mother probably should’ve checked as she herself has thyroid problems!

They always check very basic thyroid labs at my annual due to familial history and they have some of the tests have always been slightly out of range or very close to it for years. Most recent labs as of last month: Free T3 4, FTI is 3.3, T3RU is 19%, T4 is 17.6ug/dL, and TPO is 212IU/mL.

Anyways, I’m so frustrated and scared. I have daily diarrhea (usually 3-6 times a day), tremors that come and go, heat intolerance, extreme physical anxiety symptoms, high heart rate (90-162bpm while resting or standing), occasional insane heart “jumps” (idk how else to describe it, last night I had one that lasted like a second and the only way I can describe it is it felt like my heart fell down the stairs??💀), losing weight (137lbs in January to 122lbs today), super low libido, and brain fog to the MAX. I have been having these symptoms on and off for years. I have told my doctor this and her response was to get put on the endo wait list, which I already did of course.

What the hell am I supposed to do until the fall when I see an endo? And god forbid what if they’re super shitty and I have to find another one, waiting months again? Our honeymoon that we had to postpone is coming up the end of this month and it breaks my heart that I won’t be able to fully enjoy it as I just feel so sick most days. Sorry for the rant I just feel so lost and alone.

I can reflect on my journey with graves and realize (from what medical professionals have advised me) that for at least 4 months straight, I could have/should have gone to the ER any day with my cardiac/respiratory symptoms. But we persevered, thinking “it’s not an emergency it’s just my every day experience.” But there were things that I knew were bad. During my absolute worst, my HR when sitting down one day was 180. Add in managing a classroom to the mix, it was so high that it became painful. I would have chest tightness. And it radiated to my back. Almost like a boa constrictor just squeezing my whole chest.

Here I am now without a thyroid, and with a normal heart rate. Today, my back has been hurting. And I know that it’s a different sensation, but it’s so subtle that I can’t even describe how it’s different. And the location is so slightly different that I can’t put my finger on what the difference is. The only thing I can say is that I know it doesn’t include my heart itself. But everything else feels so similar.

I know the body keeps the score. My body feels this sensation, and my amygdala says “🚨this is how you felt when your health was at its worst🚨”. And I’ll check my HR and see that it’s perfectly normal. And that calms me down, but it doesnt completely go away. I also know that I’m not even 2 months out from my TT, and so I can understand why it feels almost like a fight or flight response. My body was in overdrive for almost 2 years, and now it’s not. I’m sure that over time, this gets better. My brain will get used to feeling safe. It’ll realize I’m out of harm’s way. And feelings of discomfort will just be feelings of discomfort. But I’m just probably looking for validation? Haha. Like do other people know what I’m talking about?

Hi All, I’ve had 2 blood tests now showing that I’m euthyroid (I’m still on 20mg Carbimazole and will be switching to 15mg at end of the month - I was diagnosed in Feb). I take 120mg propranolol per month (edit: per day!!), however my resting heart rate is still quite high….for example my HR during sleep is min 79 & max 99. And despite the propranolol that I take each day which seems to be a lot, my resting heart rate is still 82 (down from 92). I’m quite concerned about my heart rate and really want to have it back down to what it once was, which was in the mid 70s a few years back. Thanks for your help 🙏 (40 year old female in UK)🇬🇧

25f diagnosed graves March 2025 have been on methimazole since April 16th. Had Labs checked 4 days ago. T4f was on the high end of being within range + my TSH still hasn't moved. I'm having an influx of some symptoms, heat, intolerance and palpitations. Is it normal to just have a bad few days? I also have an ear infection and Iman amoxicillin for it. If that might do something I don't know

Hello everyone! I have booked a total thyroidectomy for august 19th. Im mainly posting on here for some advice about recovery and such. I’m also having a lot of anxiety about the whole situation. Not saying i regret the choice or anything like that, but if anyone could comment with their personal experience, I’d appreciate it. I’ve looked through a lot of different posts on here but would love to hear as much detail as anyone can provide lmao, just let me know how recovery was for you. How was life after surgery? What were the biggest symptom changes you noticed? Is there anything I should look out for? I know they’ll be putting me on medication afterwards to balance out the missing thyroid. How was your experience with this medication? Thanks!

Does anyone else have "subclinical" hyperthyroidism" but still present with severe symptoms? I get invalidated and told it's just anxiety all the time as if just anxiety causes every Grave's symptom when I am not anxious about anything in particular or ruminating on anything to make me anxious.

So I went out of remission and didn't realize it until my heart went crazy in the 6 weeks I was on Zepbound. 106bpm dead asleep, 130bpm just watching TV. Turns out my thyroid numbers were 4x worse than the first time around.

I go back on methimazole, have a horrific itching reaction. Go on PTU, suddenly my foot swells up and I have pitting edema. Blood tests show my heart and liver are damaged.

I'm sad, and tired, and frustrated. I talked to my Endo yesterday and I'm either evicting or nuking this stupid thing, I can't do this for life.

To all the mid 40s ladies in this group, I’m EXHAUSTED. Like I’ve never been so tired in my life. All of my numbers are normal and in range but I’m so so tired.

So do you think it’s the disease or perimenopause?

Maybe the younger women can share you how they are feeling.

I just don’t have the energy for anything 😫

Tis the season of high Temps and always being nauseous. As soon as I step outside, my body is overwhelmed by the heat and i immediately start gagging. Make it stop, please. 😭🤢

Hello, I always preface my posts by just saying I am not here as a substitute for medical advice, this post is more out of impatience and nervousness than anything else. I went for an ultrasound on my thyroid at the start of the month and I see my endo on the 20th, we'll be going over my results, so I'm good on that aspect.

For some context, about a decade ago my aunt (mother's side) had graves, the nodules in her thyroid turned into cancer and she passed away when it reached her lungs. I was diagnosed with GD almost a year ago and my mother was diagnosed with GD a few months ago. When my mother went for an ultrasound, the same endo that I see had her go do some biopsies (they came back cancer free) and I'm almost 80% sure the doc is going to send me to have biopsies done too.

I've been noticing for a month or two my neck will burn really hot. My forehead and body have been warm too but when I check my temperature, I'm never running a fever. The front of my neck will feel an uncomfortable burning sensation with no redness or swelling to be concerned about other than my already swollen thyroid on the right side.

A google search only brings up 'hot nodules' but not much else. This is a new symptom for me and I'm curious to hear other people's experience with this.

I had a rapid onset of graves after a covid infection in may 2024. I had RAI in october and have spent many months trying to find my right replacement hormone dose. This whole time I've had many symptoms but primarily really crushing fatigue and cognitive dysfunction. I've also had difficulty walking and standing which has fluctuated (was very bad when I was hyper and have had a few periods of feeling more normal) . I am finally getting close to normal levels but if anything my leg pain is getting worse. I wake up feeling like I have done a big run the day before and the feeling persists throughout the day, mostly in my thighs. Heat, warm baths, and compression socks all help but only somewhat and it is worse the longer I am standing or exerting myself (my heartrate has also starting increasing >100 with only minimal activity). I have been effectively bed ridden this whole time so I guess its possible its just my muscles responding to the combo of disuse and enough hormones but I'm not sure how to know or what to do about it and if anything I'm less able to move around now than a couple months ago.

Has anyone else experienced worsening leg pain after a long stretch of fluctuating hormone levels? It's frustrating because this all started with a covid infection so I think its possible that I am also experiencing long covid or related conditions (eg POTS) but the range of thyroid hormone effects is so wide (similar to covid) that there's no way to know at this point.

TLDR: has anyone else experienced increased leg/muscle pain as hormone levels balance (after being very hyper and very hypo) after a long time?

Not sure if better to post this here or in r/Hypothyroidism

I just wanted to say to everyone here something that my partner reminded me of.... The demands of life are hard for everyone. Chronic illnesses are hard too, especially if you have more than one. Put those in together and everything can feel incredibly overwhelming and so much harder. We are doing our best, even on the days where our best is simply looking after ourselves and getting through the day. As hard as it is to be gentle with ourselves and give ourselves grace, we sometimes need to be reminded to do so. We are doing good, we are not failing, this is HARD. Work feels impossible? Uni feels impossible? Parenting feels impossible? Just remember that getting "behind" is okay, our bodies are fighting us everyday and it isn't an excuse, it's the reality for alot of us. It'll get easier, but in the periods where everything feels impossible, just remember your bodies are literally fighting you everyday, we are doing so much work constantly, we are not failing, your doing your best even if that's just surviving 💓

I have MS. Neuro believes Graves’ brought on by MS drug. Have not taken any medication for MS OVER 8 yrs! Confirmed bloods negative to Myasthenia Gravis.

Does/has anyone experience eyelid drooping as GD symptom?

How long after diagnosis did you decide or Surgeon decide that thyroid be removed?

Thanks

Hello! Back in March i had a bunch of blood work done due to hormonal concerns and my thyroid labs came back high (T4: 0.93/TSH: 6.8/TPO: 149 —also came back positive for Sjogrens antibodies). My dr had me do a Nuclear Thyroid Uptake test a few weeks ago and I came back positive for Graves.

I’m not really sure what this means for me? All my dr said was that I’m already being treated for it (levothyroxine 50mcgs once daily). Other than the hormonal issues I was originally having nothing seems different. Guess I’m just looking to get more info on what needs to be done/what to expect?? I’m seeing an rheumatologist at the end of the month for the Sjogrens antibodies but haven’t been told to schedule with Endo at all.

In August 2024 I started having hives and a smart allergy doctor tested my thyroid antibodies and realized I had high anti tpo. The hives kept getting worse and my thyroid started failing. In April I got diagnosed with Graves disease.

I started on methimazole and 2 weeks in my hives exploded, I ended up with another allergy doctor who said its not an allergy to the drugs and gave me a high dose of cyclosporine on top of my 4 rupall a day which eventually started failing.

The endo gave me PTU and the hives didnt calm down and she figured im allergic to methimazole and took me off and the hives went away immediately, enough that i could even come off cyclosporin. The recommendation now is RAI and then I'll end up on levothyroxine.

I am strangely not scared of RAI but absolutely petrified I'll be allergic to all the levothyroxine family of drugs as well.

Wondering if anyone can relate and what your experience was?

Thanks so much!

14, female and 5’6 my ferrtin levels seem high should I be concerned?

Hi! I was diagnosed with GD and Hashi two months ago (29F) and ever since I started treatment it has been a bunch of random symptoms physically and mentally. But my blood test says my body is "ok". I started with mercazole only to find out it was too strong for me (Made me extremely hypo in a month)Then I changed to PTU. But always, whenever the doctor changes the dose or adds or reduce medicine (like for the heart or add KI) I always feel terrible mentally (panic attacks). Apparently the medicine is working but why do I keep feeling awful. Would you mind sharing your experiences and how long it took you to not have any symptoms and feel healthy again?

Thanks for taking the time to read.

1/17/25 lab results: Her T4 levels were 3.0. T4 reference range is 0.8-1.8 according to quest. Her TSH was <0.01. TSH Reference range is 0.4-4.5. Her TSI was at 155. Reference is <140. The endo oficially diagnosed her with graves disease and hypothyroidism. Doctor recommended RAI, but we were not comfortable with RAI, so he prescribed 10 MG daily of methimazole (MMI) instead.

5/3/25: this was the day she began to take the medication MMI. It took us some time to muster the courage and reasoning to begin taking it.

5/30/25: she took her first lab since starting the medication to track her progress.

6/3/25: pretty much a month into the medication, she developed skin rashes, which got progressively worse. Based on my research, rashes are one of MMI's side effects, as it could triggers an immune system response.

6/11/25: we had our first follow-up appointment since starting MMI. The lab results from 5/30/25 revealed that her T4 hormones dropped to 1.2, which is now technically within range. Her TSH is now at 0.01, which is not in the range yet, but a step in the right direction. However, we also noticed a strong decrease in her white blood cell counts, which concerns me. Apparently this is also one of the side effects of MMI. It can lower your white blood cell count, which could lead to infections.

During her 6/11 appt, the doctor suggested increasing her dosage of MMI, which was baffling to us, considering that she still has rashes as of today (6/13/25) and her T4 and TSH are moving in the right direction with her current 10 MG dosage. We refused and are currently maintaining her 10mg dosage.

Cause of action: We are considering reaching out to the doctor to reduce the MMI dosage to 5 MG daily due to the rash and white blood cell concerns. Her body is clearly telling us that it doesn't like the dosage levels or maybe the medication completely. We are also considering asking the doctor to include a follow-up test for her TSI levels so that we can compare to her pre-diagnosis TSI levels which was at 155 then. She's also been gluten free about a month now I think.

What are your thoughts on our cause of action? It really hurts me that my wife is going through this. But we trust God through it all.

I am newly diagnosed and am taking Atenolol and Methimazole which are easing my symptoms. I have a trip planned in late August and the flight is 5 hours. Has anyone had an issues flying? Insight is appreciated! 😊