Hi all!

I've seen a lot of posts about swinging hypo and now unfortunately, I'm in the same boat. As a bit of back story, I was diagnosed in August 2024 as being hyperthyroid when I went for a fertility workup. Due to slow healthcare (Canada), I didn't get in with an endocrinologist until end of October where he tested TRab, which came back positive at 5 iu/l. My Free T4 and T3 were elevated above normal and TSH undetectable at that time. He started me on 300mg of PTU daily (PTU was chosen as I'm hoping to conceive soon).

I went for follow up blood work mid December and T4 and T3 were normal at that time but TSH still undetectable. I felt great at that time - heart rate had normalized, I was able to exercise again, hand tremor was gone.

Lately, I've been feeling kind of crappy - super tired and bloated and weight just kind of holding steady despite being active with exercise and eating well. I tested this week and my results have come back pretty significantly hypo with TSH now at 10.9 iu/l, free T4 low and free T3 still normal. Haven't had antibodies tested since October but I did have high TPOab and Thyroglobulin antibodies at that time.

I'm kind of surprised to have swung so hypo in just 2.5 months on meds. Also feeling disappointed as it continues to be a setback in my fertility journey. For others that swung hypo, how long did it take from when you were first diagnosed as hyper and started on meds? I meet with my endo next week but hoping to hear about others experiences.

Hello!! I recently found out I have hyperthyroidism. This is terrifying!! Got lab work done today and IMO my labs are crazy. They started me on Methimazole today, 2 x 10mg per day. I have mixed feelings about this drug. If you don't mind sharing, I'd love to hear about anyone's experience with this medication. Has anyone had any luck with trying natural remedies instead of medicine or surgery? I'm trying to learn as much as I can about any/all treatment options. Any help or information you can share is appreciated. Thank you!!

I think this started back in July 2024, i had it way before in 2023 but not that intense of frequent not until 2024 when i was diagnosed with graves.

i don't even know if its the muscle or the bones or both.

The point is that i get this restless legs feeling so easily in my bed and end waking up after 2-3h of sleep because my femur and pretty much only my femur bone or the muscle (don't even know if its the bone or muscles) get a bit painful so forces me to change position, sometimes its mild but some other times the restless feeling and pain reach the glute muscle and goes away when i switch sides or sleep on my back.

but then when i sleep on my back and cross my arms like a mummy to sleep i get elbows and wrist pain, mostly in the right arm and again i need to change position to be able to get some sleep.

Maybe it has nothing to do with graves or methimazole, maybe it's just my mattress which btw is kinda new i bought it 4 months ago im just wondering if anyone else has similar issues.

this just happens when im in my bed and sleeping or trying to fall asleep, literally just in bed.

How long did it take for your heart rate to go down? I will be sitting in my office doing work and it goes to 100bpm. It's so frustrating. My chest hurts and I just want it to stop

Hello everyone!

I'm really interested in getting a hot stone massage, but someone mentioned that hot stone massages are not recommended for those with autoimmune diseases. However, I haven't been able to find anything specifically about Graves or related medications (methimazole, propranolol, etc) that says it's not ideal.

Does anyone know anything about this? Has anyone gotten a hot stone massage and been just fine or experienced some sort of side effects/flare ups?

TIA!

Anyone else suddenly have really noticeable veins. I see obvious blue veins all over my body and most at my neck it’s so scary

i’ve been on treatment for 4 months, going back and forth between 25/30mg of thyrozol per day. now for the first time, my t3 and t4 are in the normal range, although at the other end - almost on the limit of normal/hypo. i’ve also noticed my fatigue worsening - it has become really debilitating. i have no motivation and constantly feel apathetic. i gained around 3,5kg in 3 weeks too and although it’s a small weight change, for me it was alarming. despite all of these symptoms, my doctor is not willing to lower the medication dose, since my TSH is still <0,01 and igG very high, meaning my body is still technically on overdrive. am i imagining the worsening symptoms or is it really possible to already feel them even though im not yet actually hypo? what to do in this case?

I'm on my third relapse now since developing graves after the birth of my 4yo. In Sept last year I felt awful and my bloods were normal. I was so dizzy, sick, weight was dropping off me and I knew I'd relapsed. Pushed for bloods a week later and my levels had tripled and I was put back on carbimazole.

I started off at 30, then 10 and now 5 as my levels stabilized instantly as they had done the other 3 times. However it's now 3 months later of 5mg every day and I'm sure I'm experiencing relapse. This was my last round before they recommended RAI next March. But is it possible to relapse while on medication? I had blood taken yesterday and will know results next week but I'm so sick of feeling awful again, my heart rate is insane and I'm so dizzy and achy!

Hoping for some guidance from people in similar situations. My TPO AB is currently at 1300 but I was marked as in remission from Graves’ disease about a year ago. My antibodies have remained high the whole time and I’m just concerned about the likelihood of developing thyroid cancer as I’ve always had nodules on my thyroid gland that were concerning. When I spoke to my GP, they said it was normal to have high levels when you have an autoimmune disease does anyone else have experience with this?

It might just be my paranoia, but I still experienced a lot of symptoms related to thyroid conditions. I had been discussing with my specialist about having my thyroid removed and I don’t know whether it’s the best move just to have a thyroid ectomy or if these high antibodies are normal.

Please let me know your experiences 🙏🏻 I have about a month to go untill my specialist appointment and I’m considering making the decision to have a thyroidectomy.

So I got diagnosed with graves this time last year.. I never really experienced heart palpitations often, every now and then I’d get them and they never really bothered me… I mainly struggled with a high heart rate. I’ve been on Methimazole for a year, started at 30mg and am now down to 5mg a day. I used to take a beta blocker in the beginning to help with heart rate but haven’t taken it in months, I don’t feel like I need it. Last labs I got most of my levels were in normal range, but I’ve noticed the last couple weeks I’ve been experiencing more heart palpitations than usual? Such a weird and not good feeling lol. They happen at random times, I woke up in the middle of the night the other day to let my dog outside and when I laid back in bed to fall asleep, I started getting them for a little bit. Anything with my heart makes me anxious.. should I be concerned I’ve been getting palpitations more than I used to?

I was diagnosed with graves in December. I started taking methimazole and was feeling amazing, but then about 2 weeks later I broke out in the most painful hives. Literally one of the worst things I’ve ever been through. My endo then started me on PTU. I haven’t felt great on it, but I know it takes a little longer to start working. I hit the 2 week mark on this med and I thought I was in the clear. Today, about 3 weeks after starting it, I broke out into hives. My endo says my only options are radiation or surgery. Has anyone been on any other meds that helped them? I don’t prefer to do either of those options, but of course I’ll do what’s best. Everything I read people are saying don’t do either so I think that’s what’s scaring me. TIA

hi all, my mum has graves disease. she's had radiation on her eyes but it was ineffective sadly. she had her thyroid removed 1.5 years ago.

her eyes still bulge with one larger than the other. she's having trouble finding swimming goggles that can fit her eyes. the main issue is that her lashes get caught in the goggles because of how her eye is.

has anyone tried swim goggles that worked?

Newly diagnosed Graves here. 42, F and symptoms were exhaustion, high BP & heart rate. What I didn’t get was the weight loss, but I was snacking like a hungry hungry hippo so I think I did have the increased appetite. Since starting methimazole a little over a month ago I’ve lost 10lbs without trying & my appetite is gone. I’m guessing my metabolism is out of whack anyway because of my age, but anyone else have this kind of opposite weight effect of Graves?

Does anyone have any advice on how to manage stress? I know stress can trigger a flare up which makes me stressed about being stressed🙃. It’s unrealistic to never be stressed but I tend to get stressed easily. Would love any advice!

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My latest bloodwork. T3/T4 are both at the lowest possible level for the "normal" range. TSH is detectable for the first time but is only at .04.

I've been feeling hypo AF. I hate it more than hyper. I'm so bloated I look pregnant. NONE of my clothes fit. My face is gigantic and doughy. Constant headaches. Freezing all the time. Acid Reflux. I can go to bed at 8 and still be tired when I wake up the next day. I had gained 30lbs since starting methimazole and am up another 10lbs in the past month but I'm eating less than ever. I've lost all interest in going out, lest anyone see me like this. Since none of my stupid winter coats fit anymore and I'm freezing all the time I just stand in front of my fireplace every night shivering and ruminating about how much I hate my thyroid.

My endo usually takes 2+ weeks to call me after bloodwork but I'm dying to know - since I'm technically in "normal" range am I not considered hypo? Because I feel like my meds need an adjustment or I'm going to lose it. I don't care what the green "range" says, this can't be normal.

My TT consult in 1.5 weeks can't come fast enough. I want it out yesterday.

Edit to mention I have both graves and hashis but have had active graves for a long while.

I was diagnosed in April 2024 with Graves’ and TED. My TSI was 311, TrAb never checked, TSH was 0.01, T4 Free was 1.7, and T3 Free was 3.3. I am only on Methimazole because she said a beta blocker would bother my asthma. My symptoms are fairly mild but still suck. Anyways I had been fairly happy with my doctor up until today. She had been quick to respond to messages and new lab results. She had been very informative and helpful. I just got my latest lab results and no response. Which I get she is busy and has more patients than me. I sent a message after a few days asking about what she thought of them and to get more information on surgery. According to her she is very, very conservative when it comes to surgery. She basically uses it as a last resort. She talked about complications, having to be on hormone replacement my whole life, and they most people find it’s not the same as having the thyroid still. Ok it’s a little soon to ask about surgery so that’s fine I guess. I don’t love her response but whatever. So again I asked her what she thought of my lab results. I asked again because she ran tests on my liver and kidney. So I was curious how she thought they looked. No answer! I told her despite everything being normal I am experiencing more hyper symptoms. So she changed my dose slightly. Then I asked if she wanted me to have more bloodwork since normally when she changes my medication she orders more labs. She was basically like “sure we can do more 6 weeks.” I am super discouraged because of have seen so many people complain on here about their endocrinologist. I don’t know if I am overreacting or not. Sigh!

In preparation for my TT, I am required to take lugol for 2 weeks before my surgery. People who have taken lugol before, did you feel any side effects?

Hi everyone,

I'm just looking some advice/guidance with dealing with symptoms.

So to try and make a long story short I was diagnosed with greaves disease about 3yrs ago. After a lot of hassle they eventually did surgery but only did half due to complications last summer. The surgeon said they would remove the other half but keep coming up with excuses to not do it, first it was 'bloods aren't right' then 'need the consult to agree' to it and now 'we need a long timeframe' (was meant to have the surgery today).

My GP and consultant have been doing what they can with meds to achieve what the surgeons want but with the now further delay I'm just lost on where to go. I'v tried googling alternate ways of dealing with this but never gives me anything.

The issues now is I was put on a high dosage of PTU (600mg daily) a few months ago and eventually became an extreme state of hypothyroidism and my body became toxic. Eventually I was reduced to 400mg but that still left me hypo. Now I'm on 200mg but still feeling the hypo symptoms badly. My goiter has grown to the point where it's getting harder to breath and talk and also there's veins bulging. My GP and consultant are aware of these but they both know surgery is the only option.

I'm just wondering if anyone knows if there is an alternative way I can do at home to just releave the pressure on my wind pipe? I don't think the surgery is gonna happen anytime soon due to the last experience with them and just want to take some control back on my life, even just a little bit.

Just in case you are wondering I'm allergic to carbimazol and iodine so I can't take those.

I stopped drinking when I was diagnosed with graves disease a couple years ago. I'm currently taking metoprolol and methimazole. I'm hoping to go on a cruise either late this year or early next year and thought it'd be fun to get the drink package, but I figured it'd be smart to ask around first. Will I be okay if I only plan to have one or two drinks a day, and I don't drink anything too strong? Or is alcohol an absolute no-go on these medications?

Hello! I was diagnosed with Graves disease almost two years ago. I take medication for it and my blood test results have been in normal range the last 4 months. The last two days I have noticed hand tremors. Slight, but noticeable. I am going through a stressful time so I didn’t know if the stress could be a cause for a flare up? Or if something else could be going on? This might be an obvious answer but I wanted to see what others experience’s were

Content warning: eating disorder

Has anyone else here experienced hyperthyroidism, celiac disease, PCOS, AND binge eating disorder (BED)? This is kind of half-rant, half looking for other people who’ve dealt with the intersection of hyper/Graves and a bunch of other autoimmune issues, especially if you’ve figured out strategies for managing it all. I’m in the midst of them right now, and at times I feel like I’m kind of losing my mind.

I’ve struggled with BED on and off since I was fourteen (I’m in my late twenties now) and I was doing pretty well with it until 2024, when I started having more regular binges again. I was diagnosed with celiac in May, and since restriction is typically a trigger for me, I started binge eating more frequently after switching to a totally gluten free diet. (I figured that if I can’t eat gluten, I can at least treat myself to all the gluten free goodies that I want.) Fast forward to November, and I get diagnosed with PCOS. My gynecologist tells me to cut out *all added sugars* and most carbs. (I cry.) I replace almost all of the added sugars I’ve been consuming with fruits and switch to less-processed carbs. Some of my PCOS issues improve (I’m seeing a reduction in acne, less painful menstruation, and my testosterone levels start to go down), but other issues remain or worsen (I’m still having significant hair loss, my heart is racing, and I’m having pretty intense tremors in my hands). I also notice that my appetite is THROUGH THE ROOF, and I start tracking calories again (something I haven’t done in years because it usually triggers binge eating) and discover that I’m eating up to 3,500 calories a day, even though I’ve been losing weight over the past several months. So, my doc checks my TSH, and it comes back as <0.005. Hyperthyroidism it is.

My doctor starts me on 5mg methimazole 3x/day. I start taking it and notice a mild reduction in tremors and some days where my appetite is a bit muted. I figure that the medication is doing its job, and I might just need to switch to a higher dose eventually. (I’m still waiting to get my T3 and T4 levels checked because of health insurance obstacles.) Then, almost exactly at week four of the methimazole, it’s like a switch gets flipped. Suddenly, I feel full. My ravenous hunger has vanished, and instead of feeling shaky and lightheaded an hour after eating, I feel… satisfied. I’m sleeping through the night—no more waking up feeling hot and sweaty and jittery. My tremors are almost completely gone (they only seem to emerge after an intense workout or a big cup of coffee.) And, the biggest change of all (one that I didn’t even expect) is that I FEEL CALM. I’ve been anxious for pretty much my whole life, but I always figured that this feeling of being on-edge was due to all the stressful things that were happening. (Of course I’m anxious; I’m managing a whole pile of chronic illnesses in addition to regular life stressors! Who wouldn’t be anxious under those circumstances?) But, nope—apparently, when my thyroid isn’t pumping a gazillion gallons of hormones into my system 24/7, I don’t feel like a live wire all the time. I had no idea that so much of my social anxiety and perpetual agitation was related to my hormones, not just *who I am as a person.* It almost feels like a spiritual experience to suddenly have this clarity.

I get to experience this new, blissfully calm way of walking through the world for almost a week. Then, disaster strikes. I go out to eat at a restaurant that *supposedly* serves celiac-safe meals, but evidently, they do not. I get glutened. I have belly cramps, gas, bloating, diarrhea, and joint pain. I figure, “Well, this sucks, but at least I’ll be feeling back to normal in the next few days or weeks.” But then, I notice something more significant is happening; my methimazole seems to have stopped working. I’m having night sweats and waking up feeling too hot. My hands are shaking again, so badly that I’m having trouble writing. My hunger is once again through the roof, and I’m eating until my jaw muscles hurt, but my body still feels like I’m starving. Worst of all, the calmness that I experienced when the methimazole really took effect has evaporated. I’m back to my anxiety-ridden state, and it almost feels worse now that I know there’s a way of *not* feeling this agitated. After some Googling, my hunch as to what happened is that the inflammation in my gut caused by the recent gluten exposure reduced my ability to absorb the medication, so I’m just not getting adequate doses of the methimazole anymore. I have an appointment coming up with my PCP soon, and I’m going to float this theory by her, but it’s my best guess as of yet. I have no idea how long this will last, and it feels awful, like I’m stuck back at square one while I wait for my gut to heal.

So, in the meantime, I’m back to feeling agitated and dealing with all the other hyperthyroidism symptoms, my gut feels *terrible* from the combination of being glutened and being absolutely packed with all the food that I’m eating, and I feel so frustrated with myself for binge eating even though I can’t tell how much of this is actually BED-related, or if it’s my body’s increased need for food due to hyperthyroidism.

If any of y’all have been through anything similar, I’d be so grateful to hear what helped you out. (Or just to know that someone else has been through this, too.) I’m fortunate to have a lot of supportive people in my life, but most of them haven’t been through anything quite like this, so sometimes I just feel like a total oddity, and it’s easy to go down a mental spiral of feeling impossibly alone and broken. And if you read this far, thanks for just listening to me rant. <3

(Sorry long vent, I don't often come on reddit but I feel so lost and just really would like to be heard.)

For context: I found out I was pregnant in October last year. my endocrinologist of 4, (almost 5) years said she had to drop me as a patient because even though she could have still seen me as a patient until I turned 25 (I'm 19) she didn't feel comfortable or confident in her practice to continue with such a big change I guess.

On monday my new doctor told me if my labs are okay he will stop my treatment. My treatment that I've needed desperately for 5 years to keep me alive. Not even healthy, just alive. I have so many flare up days especially now with the pregnancy. For half of my teenage years I've fantasized so much about my treatment working so well and my body curing itself, but when he told me that I just felt so uncomfortable. It felt like my heart dropped to my stomach. Today his nurse called my mother and said they won't be sending my prescriptions and for me to not take them anymore, and to check in for an appointment in 2 months.

My mom isn't comfortable with this either but she said we don't have a choice because she can't miss work to take me up state for a new doctor. We live in a very small town surrounded by other small towns in southern alabama so there aren't really many actual professionals in our area and we'd have to go to Birmingham.

I dissociated so hard when my mom had me take out my methimazole out of my medicine dispenser, but a few hours ago i really got hit with the reality of it all. I've been crying so much since. I've told my boyfriend about how scared I am and he does his best to comfort me but he really isn't able to understand just how scary this could get. He keeps telling me "I read online that it mostly gets better during pregnancy." The doctor mentioned that too. I think they are clueless. Maybe that's too harsh but I feel so out of control of the situation.

Because all I can think of is all those months I spent in bed, unable to walk without help let alone turn in bed without completely exhausting myself. Before this I used to be pretty attached to my phone but during that time I didn't even have the energy to play my mobile games or watch my comfort youtubers, a few times yea but not much. I don't know if anyone else can relate to this next part specifically but I had a specific wall across from my bed that I would stare at for hours, every single day.

And now it's not even just me. Now I have a baby and I know he feels everything I feel right now. I feel so guilty, he doesn't deserve this and if this ends up effecting him during the pregnancy or when he's born I'm going to have to live with that for the rest of my sorry life.

Has anyone here been prescribed these two medications together? I have just been described both by my doctor to take yesterday and I am a little nervous to start them!

I had my suspicions that I had Graves’ disease, and it was confirmed last year around this time. I’d been suffering its noticeable symptoms for about a year, but when I look back, I realize I probably have been living undiagnosed for quite some time. (Heart palpitations, excessive sweating, miscarriages, weird mood swings.)

It just sort of sucks. I have a goiter that comes and goes, along with TED and terrible insomnia. I’m taking methimazole and it’s helping a lot. (No more itchy shins, better moods, less TED flares). But it’s scary because if I forget even one day, it’s like I’m riddled with symptoms again.

I’m 6.5 months postpartum and I have to say, graves has really done a number on me. I had to go through my whole pregnancy getting blood drawn almost every week. I was considered high risk because of the diagnosis, and by the end I was getting my baby scanned 3 days a week.

The TED made me super self conscious and I stopped a lot of my social hobbies. I got tired of explaining why my eye “looked so big.”

I’ve put on a lot of weight (not just from pregnancy, but the medication.)

I’m slowly starting go get back to myself, but it’s hard. I never expected to be blindsided by this disease. Sometimes I feel pretty hopeless. I fear needing surgery or my condition getting worse.

anyway, it’s been a whole year since my diagnosis and I feel really sad about it. I’m grateful it was caught, that I can give this ailment a name, but I am struggling with its impact on my health and my life.

If so any results of use?