My medical team (endo NP, endo MD, and surgeon) are all saying different things, and I'm so overwhelmed.

My surgeon is acting like it's no big deal, and he can remove half of my thyroid and the nodule I have if I really want him to, but he thinks I don't have to.

My endo NP suggests doing just RAI and killing my thyroid and the nodule that is making me hyperthyroid.

My endo MD suggests surgery but says I have to take Methimazole leading up to it even though it makes me feel worse (anxiety, heart palpitations, flu like symptoms).

I have Hashimotos (confirmed) and possibly Graves (unconfirmed) as well as a 4cm thyroid nodule that is producing hormones. My TSH is 0. My hashimotos antibodies are over 1k. My t3 is normal and t4 is high.

I think I feel "normal" without medicine, but I also don't know if I know what normal is.

hi all! i’ve been diagnosed with graves for over two years now, taking half a pill of methimazole every other day as prescribed by my endocrinologist.

lately, i’ve felt the mood swings, general numbness, and irritability creep back. i had my tsh levels checked about two weeks ago for a different matter and it was still in normal range but on the hyper end - so it could be i’m starting to lean hyper again.

just curious if anyone had any strategies for mitigating the irritability? it’s been awhile since i’ve had to deal with this. usually i meditate but that’s not always doable. thanks!

If you went hypo on methimazole, did you have any symptoms? Or did you just find out through bloodwork?

I had a halter monitor study that found an arrhythmia and I'm getting an echocardiogram today and am a nervous wreck.. I've heard people in here post that they went into chronic heart failure, need a pacemaker, etc. and my Graves' disease was ignored by my doctors for at least 4 years, so I'm freaked out that my heart is damaged now.

I've had an echo done before (preGraves' disease) and it was very traumatic because I hate hearing my heart squelching like an alien inside of me, but I'm more terrified of the results because of Graves' damage this time. I'm sure Graves' anxiety is heightening my health anxiety because I'm trembling today.

Has anyone gotten an echo with Graves and found something that was fixable? I want to be mentally ready that even if they find something it may still be treatable. My biggest fears are if they find something and are like "this is incurable" or if they're like "you need open heart surgery NOW." I recognize this is pretty anxious thinking, but the open heart surgery scenario happened to my friend also in his 20's a few years ago (he had an infected heart valve) so I have a lot of trauma mixed with Graves' anxiety to work through.

Hey everyone, after a year and a half of managing my Graves’ disease with methimazole, I’ve reached a balanced state (TSI 146, normal TSH). My endocrinologist gave me the go-ahead to stop taking methimazole, but they emphasized being aware of any changes in the first year after stopping.

I’d love any advice on how to maintain this balance. I know there’s no guarantee Graves’ won’t return, but what are some ways to monitor my health and stay proactive? How did you handle it if you went through something similar?

Also, I’m a naturally anxious person and dealing with some personal stuff, which adds another layer of stress, and I might start working with a psychiatrist (something my therapist suggested). After a year and a half of a set routine, I’m feeling a bit lost and uncertain about what comes next.

Thanks in advance for any tips or personal stories – I’d appreciate any guidance!

I’m only on 5mg and it’s been a week so far. I’m taking it at night before bed, but this whole week so far I feel like I could just fall asleep at any given time. I have kids so this is not ideal. Has anyone else had this?

Let me know your experiences

Newly diagnosed with Graves’ disease and started carbimazole straight away. My endocrinologist ordered some blood tests after two weeks on treatment and my TSH is lower than before, 0.005, FT3 went back to normal and FT4 is slightly elevated than two weeks ago. The thing that worries me is the liver enzyme GGT, which is 91 I/UL, (normal range >40). Did it happen to anyone else? I’m only taking 15mg of carbimazole per day.

Newly diagnosed 1 month ago. Just wondering is it possible they are wrong. Can they definitely tell just from a blood test that you have graves disease. Results have been seen by my gp and endocrinologist. Oy had bloods done no other test thanks

So I’ve started treatment with a new doctor. She’s run all the tests and blood work etc. I have Graves Disease confirmed and all. The thing is, now she’s saying they need to biopsy some nodules she found to see if any of them are cancerous. This is doing my head in! Has anyone had this concern flagged by a doctor or is my doctor just being thorough?

Hey everyone. I need to rant because this is really taking a mental toll on me.

September I had surgery and was diagnosed with stage 3 endometriosis. About a month later I experienced thyroid storm and went to the hospital (not knowing this) and stayed for a few days. I went to my endocrinologist, and after a few labs and medications, it’s official that I am diagnosed with both Graves and Hashimotos.

It’s been a rough couple months. I went from having no known issues with my body (had symptoms for years but ignored them) to everything being wrong. My T3 and T4 levels are finally stabilized, but apparently I’ve been dealing with this for years so my doctor isn’t expecting all my symptoms to go away immediately. I’ve been out of work for longer than I had hoped (because I work hard labor outside, plus all of this happened back to back), and I’m still not up to going because of how I’m feeling.

I feel defeated. I’m glad my levels are normalized and everything is going good, she’s hoping I’ll go into remission within the next year or two. But if not I’ll have to consider other options. I feel like I’m overreacting with how I’m feeling both physically and mentally, my doctor assured me I’m not since I’ve been dealing with the severity of it for so long. But I’m still in my head.

I feel worthless because I can’t exert myself in any way. I feel like this issue is going to rule over my life, even though I know it’s not. I feel tired, cold, hot, memory is getting worse, heart races so easily, I keep losing weight and have no appetite, I know I’m not myself. Then my time of the months are excruciating whenever they come because of the endo and I deal with those symptoms too. I hate it so much and I’m almost embarrassed it’s doing all of this to me.

Does this ever get easier???

Did you experience constipation when you were diagnosed with Graves and not on medication? I am still in the diagnosis stage and have been constipated for a long time. I am also seeing a gastroenterologist and will probably have a colonoscopy. My doctor says that hyperthyroidism can have different effects than expected in some people.

Hi, i got my result elevated t3(4.93) ,t4 (2.11) and decreased TSh 0.0129 mIU/L with raf range TPo. Guess its not graves than is it just elevated thyroid hormone which i treat with methimazole at moment.

Ultrasound in few days.

Thank you.

Im getting divorced and with that i lose my insurance. I'm a SAHM so I don't have a job currently and I'll need to get on Medicaid when the divorce is finalized. I looked on my endos website to see if he has Medicaid listed, nothing. I'll call the office to confirm obviously but this terrifies me.

I think maybe I should start looking for one that does bc ik how long the wait can be for an appointment. My next appointment is in December, idk how long the divorce will take id assume I'll be cut off by my next appointment.

Idk just venting. This sucks.

I'm sorry if this isn't the right place to post, but I know that Grave's also involves hyperthyroidism. I was hypo and my doctor bumped the dose too high and now I'm hyper. Although she adjusted the dose two weeks ago, I'm still feeling symptoms. I'm wondering if this is one of them.

Every three or four seconds I feel the need to flex the muscles in my legs/arms/shoulders/neck. It's gotten to the point where I can't relax enough to fall asleep. Is this a symptom of hyperthyroidism? If so, how do I get this to stop? My muscles now feel tight and achey.

I relapsed back into hyper mode in June and my husband has accused me of being lazy ever since. He's convinced that I'm not that ill and that I need to work so while still hyper I got a job. I've been miserable ever since. I also homeschool our 3 kids. He doesn't seem to care how hard all of this is for me just as long as I bring home a check. He's even stopped paying bills to get back at me for not being able to work while I was sick. I had RAI two weeks ago and I've been struggling with feeling hyper but he said I should be fine eventhough I told him it takes time. I just feel so stuck to the point where I question why I need to continue living. This is hell.

I just got diagnosed with graves and hyperthyroidism and got put on atenolol and methimazole. My doctor mentioned stopping and going to the er if I get a sore throat and fever. That same day, before I picked up my medicine from the pharmacy I developed a sore throat and headache. My son’s been a little sick and stuffy so I caught it from him. Should I wait until my throat is feeling better to start the medication?

Hi everyone,

My TT surgery has been scheduled for 9 December and I am feeling very nervous about it all! I thought I wouldn’t get a date until at least January so thought I had a bit more time to mentally prepare.

My questions are:

1. those that have had TT have you ever regretted it?
2. How was the recovery from the surgery? (I also have type 1 diabetes so would love to hear from anyone with t1 too!)
3. Did you symptoms go away right after surgery? My main symptoms are rapid heart, anxiousness, FATIGUE!! And unsure if this is related but zero libido like ever.
4. Has anyone struggled to fall pregnant after TT?

Any insights in to life post TT would be appreciated!

I'm on disability leave signed off by my doctors and accepted by HR, and one of my coworkers is constantly sending me snarky emails about things not getting done that aren't even technically my job. For example, a student has been taking out the trash for our lab, and the coworker emailed me that it isn't fair for the student to have to do this (even though the student doesn't have an issue and is getting paid for everything she does.) I think my coworker is just annoyed that I'm on intermittent leave and am hybrid most days. It's frustrating because I've been really communicative to everyone about my medical condition even more than I even need to be, so this coworker literally knows that I've been out this week due to a cardiac arrhythmia and eye issues. Worst part? Her brother literally has Graves disease. But I'm assuming his was milder than mine (he went into remission) so she thinks I'm overreacting or something. Idk, it just makes me feel miserable on top of already feeling horrible that I'm a shell of my former self and struggle so much to do a fraction of what I used to be able to. I just feel so depressed and wanted to vent and see if anyone can relate.

They switched me from 15 to 40mg of methiazole. Is this normal?

Hey guys 23F with graves for 18 months. I was never good at taking my medication. Until now. the good news is my labs have stabilized for the past 2 months. The bad news is ever since I started taking the Methimazole consistently, I’ve been having severe symptoms from the medication. It’s like I just can’t win.

When I take the medication consistently I experience the following symptoms - weakness, dry skin, nausea, spinning sensations, lightheadedness, abdominal pain, low blood pressure, fainting, irregular HR.

All of these symptoms are severe too. They affect how I take care of my child. They affect my work. They affect my overall quality of life.

I asked my doctor if I can be brought down on my methimazole dosage ( was on 20mg a day ) she said to take 10 mg once a day and I still felt symptoms. I even tested to see if taking 5 mg every day for a week would help and it didn’t really.

I fainted at work recently, and they told me that my phosphorus levels were low. They gave me this medication that helps raise phosphorus levels in the hospital, but they didn’t prescribe me anything to take at home continuously. When I went home, I looked up on google “what are the side effects of methimazole?” and lo and behold “low calcium and low phosphorus levels are a side effect of this medication.”

What is the point of taking medication if you’re still going to experience severe side effects that alter your quality of life? Where do I go from here? Has anyone experienced anything similar? I needed to vent …

So every time my thyroid has been hyper I get this horrible taste in my mouth like the smell of mothballs or very old people wood. It happens when I eat fruit with my back teeth. Does this happen to every one else??

I've had graves for a long time >5 years at this point, and it's been a series of highs and lows. I'm currently on a pretty high dose of methemazol, 10 mg, started roughly a month ago.

Recently, I've had the worst brain fog I've had in a long time. It was so bad that I got 55% on one of my midterms, and probably failed another one. I just could not focus no matter how hard I tried to force my brain to.

Not looking to complain or garner sympathy, I'm just wondering if anyone else has experienced this when increasing dosage? It's hard to distinguish what is Graves and what is methemazol side effect.

Been diagnose with papillary and I just want to know what to expect as I’m not doing good mental health wise … go for neck ct then surgery …. Has anyone else had a neck ct before surgery ?

I’m just getting diagnosed, and have no idea what I’m looking at. my doctor called, but i still don’t understand How bad is this? Give me something to compare to.

Did you have to stop taking Methimazole before undergoing GA?

Am not experiencing any symptoms currently but was flagged for hyperthyroidism in a blood test. Am planning to undergo an elective procedure in Jan and am wondering if I would have to stop anti thyroid meds like Methimazole for it? Or if it would be better to start treatment after the procedure?

Hi! I was curious if anyone had advice, lately everything I’ve been eating is making me feel severely ill after and flaring up symptoms. I’ve been avoiding gluten and sugar because a lot of people online have been recommending to steer clear of it, but the past couple of days I just cannot keep a single meal down. Any advice or meals that might do the trick?

Please help me. Ive been skinny most of my life and never had to think about my weight. The meds havw made me gain over 20 lbs and im miserable and trying everything. Advice.?

Hi, everyone. Got diagnosed in July, started getting treated right away. Just to recap, before I got diagnosed I lost about 30lbs, couldn’t walk up the stairs without feeling faint and was so anxious I had to quit my job.

I’ve gained about 10lbs, my hair has started to come back in (no more bald patches) AND I got my blood pressure taken yesterday at a clinic and was told my blood pressure was on the low side. In July I was sub-hypertensive.

Just checking in to remind newly diagnosed folks that improvements do in fact happen! Hang in there.

eta: I should mention as well, I still have an undetectable TSH but my T3 is now in range. For reference none of my levels were within range when I was diagnosed.

I (28F) have recently gone through some incredibly stressful life events and once they settled down I went to visit my mom, she had a scale in her bathroom and I weighed myself, only to notice that I weighed significantly less than I did a month before. I figured it was stress and didn't pay much attention but something in the back of my head kept telling me it was weird so the following week when I visited again I weighed myself for a second time and had lost about two pounds in that week, eating my regular diet. So I started to pay attention to what I was eating, making sure that I wasn't eating less due to my stress but I'm eating like an animal, a lot of high calorie foods through all the day, but I continued to lose weight. I eventually mentioned it to my family and my aunt suggested I see a doctor to get blood work for hyperthyroidism because I am also losing a lot of hair and I've been suuuper anxious and irritable lately. So I have my appointment tomorrow and maybe I don't have this at all, but it feels like I do and I have no clue how to manage the anxiousness I get from having to wait for the appointment and then having to wait for results and the whole process. Have any of you felt like that? Any tips?