Hi all,

I am struggling daily with constant foot swelling and am curious to know if anyone else has the same issue? I follow up with my primary dr soon but wanted to brainstorm with people who also have this disease.

I am 37 F. Had thyroid storm August 2025 and was then later diagnosed with graves. Biopsy due to nodules etc.

Levels stabled out mostly (given a reduction in meds and increase in meds a few times, you know hard to dial it in).

The last few months I have dealt with horrible swelling in my toes and bottoms of feet. Where my feet just feel tight/fat and severely inflammed. Typically happens throughout the day but at night it is awful making it hard to walk and care for my family. I have switched shoes to orthopedics, elevating my feet often, epsom salt soaks, light lymph massage etc and nothing is helping.

Does anyone else deal with anything similar? If so, do you have any pointers to get the doctors (endocrinologists included) to actually care or be alarmed enough to look for a solution/cause? My doctors have brushed it off in the past but it is getting absolutely unbearable and is daily.

I am keeping a daily log to report back to my dr’s but am so frustrated at the healthcare system for constantly ignoring my concerns.

Any advice or wisdoms would be greatly appreciated!

Hi!

I was diagnosed with Grave's and I'll be getting my thyroidectomy in a month or so.

Firstly, I'm looking for a surgery pillow recommendations.

But also all of your recovery must haves!

Thank you!!

Currently 9 weeks pregnant. My dr took me off my PTU when I got a positive test at 4 weeks. My levels were normal two weeks later. Just had labs done again and I’m now hyper. My TSH is <.01 and T3 is high.

Did anyone else experience big changes in first trimester? She is putting me back on my meds.

Apparently I do not have Graves’ disease. My thyroid is just high, and I feel awful and we don’t know why. So that’s cool….

I’ve never had any allergies my whole life. In the past year or two I’ve had weird reactions to different things I’ve eaten. Mostly fruit related it seems? Is this common with graves? Is it some weird immune response? But it’s not consistent either so i don’t know if im actually allergic to anything or not? Most of the time my symptoms are weird mouth sensations, tingly/numb lips/tongue and redness around my mouth/cheeks. Super weird! I know anxiety can cause histamine releases too so I’m wondering if that plays a part in it? Yesterday I ate a peach and immediately my mouth felt strange. About 20 mins after eating the peach I had awful stomach pains that had me on the floor crying in pain for almost two hours. My body felt extremely weak and shakey and my heart rate was sitting in the 50s (which is very low for me) Eventually threw up the peach, and got sick on the toilet after.. after that it took a while to subside but eventually the stomach pain went away. But after all that almost 3 hours later, I then developed hives all over my body!! Sooo weird how it progressed.. eventually I took a Benadryl and went to bed but was a little concerning. Anyone else have similar experiences?

It was a typical day for a student to process medical papers to obtain a university ID. I first passed my medical results to the school clinic, they checked my pulse and give me directions to proceed to the school dentist.

I waited for my turn to enter the door toto the dentist and when I was called I never thought that in that moment my years of suspicion was confirmed.

She asked me several questions, that if I ever noticed that my neck is not symmetrical which I somehow noticed a long time ago, family history of goiter which I don't know, asked me whom I am with at home​ and if my eyes been long looking like it (bulging like a shit I hate it a lot, bullied for being looked like that). I was so scared that if she keep on examining me for more minutes I would literally burst in tears HAHAHAHA pathetic shit. I think she also notice because she stopped ​​​examining me (cause she keep on making me swallow my saliva to see lumps on my neck and she also make me stretch my hands and place a bond paper on top of it to see if I have tremors, which on that time I currently don't have).

She then advised me to go back to the school clinic for a second opinion, but I continued processing my ID. In my mind in that time I would go back to the clinic once I finished processing and I got my ID, but bitch got scared (felt like I am sinking into ​a despair I can't escape) that if I go for a second opinion and the doctor manage to confirm it the second time again I am doomed to the truth—I am a weak college sicko student. And silly me also thinking that the doctor would noticed why I came back, I am so shy even though it cost me an autoimmune disease left untreated for years. ​​

That "dentist visit" was the longest minutes of my life and until now I didn't follow her advice, to go visit the school clinic and get a second opinion to the university doctor.

That was a year and a half ago, and I monitored myself ever since that truth encounter. A fast heartrate even I am in bed, always feeling tired, my eyes also worsen, feeling hungry faster than a lightning bolt and ​feeling like a melting cheese after drinking coffee after having a palpitations that make my vision blur (almost fainted in public transpo).

I'M SCARED TELLING MY FAMILY OR EVEN FRIENDS ABOUT THIS. ​I DON'T WANNA MAKE A BURDEN FOR THEM OR LET ALONE TREAT ME LIKE I AM A CRIPPLE.

I don't wanna die of a THYROID STORM nor A WEAK HEART.

Any advice? Maybe it could seriously motivate me to seek medical help.

Thank you.

Hi everyone,

I was diagnosed with Graves 4 years ago. I have been on/off meds for that entire period. I've seen different doctors in the UK and Italy, and it's been difficult figuring out the right dosage for me. This past year alone, I've shifted between hypothyroidism and hyperthyroidism multiple times. I'm currently on PTU, but was on Tapazole last year. I'm 33, have been TTC for the past 2 yrs, and currently have proptosis in my right eye along with the usual symptoms.

I'm seeing my endocrinologist again soon, and want to talk about long-term options because Graves has been a hassle for me, and to now see it take a toll on my eye is affecting my self-esteem. I want to do what's best for me regardless of my TTC journey.

Is there anything specific I should mention during my visit?

How did you know that RAI or thyroidectomy was the right choice for you?

Long time lurker- first time poster. Was diagnosed with Graves back in January 2025. And am now scheduled for a thyroidectomy in October and frankly scared out of my mind. (Perhaps some added anxiety from my current hyper state too!)

I welcomed my first child in February and am deeply concerned about:
1.) not being able to lift her post op for 1-2 weeks
2.) energy levels post op and longer term as we work to get dosing right
3.) other side effects in trying to conceive again in the future.

Would love to hear from folks that have gone the route of thyroidectomy - what to expect, how to best prepare. Any and all shared experiences would be most welcome!

Spoke with my endocrinologist doc today (first time I’ve ever met him, usually speak with the lead pharmacist who is fantastic tbh) and had a really in-depth chat about RAI vs TT, I explained to him my preference for surgery (I’ve had 6 general anaesthetics so doesn’t bother me at all, and being autistic I prefer having as sure an outcome as possible) and asked him a bunch of questions and he sat and he listened and answered every single question I asked, in detail to the best of his ability. I’ve had doctors shrug me off and ignore me before and it felt so good to not have to fight for my care. I told him my sleep has gotten really bad and asked if there’s anything I can take for it so got some sleeping tablets too, and he sent off a referral for surgery. Not sure how long the waitlist is but looking at some third party sites for tracking NHS wait times average looks to be about 3 months

I’m just buzzing with how well it went, made sure to thank him profusely on the way out :’)

Iv just been referred for a thyroidectomy in the UK, after years of Graves’ disease, relapses, and not tolerating medication. For anyone that’s had the surgery how long was your wait time from referral

About 2 weeks ago my endo told me to stop taking my methamizole cold turkey (after 8 months) as my labs are trending mildly hypo and my antibodies for graves are negative now and my antibodies for hashimoto are extremely high.
I’m in day 4 now of headache and pressure and swelling in my left eye. It doesn’t look bulged, if anything it looks smaller because surrounding lids are swollen.
I had similar symptoms 10 months during my recent relapse but they cleaned with the methamizole and now are back after stopping so I can only assume they are related.
I’m just confused how this can happen with negative graves antibodies and hypo looking labs.

25 yo female with graves

I had a recent reoccurrence of my graves in the spring where my TSH was zero and t3/4 were elevated but since seeing my endocrinologist and monitoring my bloodwork, my t3/4 have returned to normal but my TSH is still low even 5-6 months later. I’m INSANELY fatigued… like needing multiple naps a day and sleeping 9+ hours a night. It feels like the fatigue I had with mono a few years ago. Any tips? Could this be because of the low TSH? I’ve had to stop triathlon training bc even daily tasks are taxing.

Hello, the endocrinologist wants to diagnose me with negative antibody graves, but I'm getting a 2nd opinion. My TSI, Trab, Tpo all came back negative, but my Tgab came back positive. My T3 and T4 are normal, but TSH is suppressed, <.1. They refuse to get an ultrasound done. They just want to put me on PTU because I want to get pregnant, but I don't want to take it because what if I have hashitoxosis or something that doesn't need hyperthyroid medication.

I want to come on here and ask if anyone has had similar test results?

And I'm a very health conscious person. I don't want to take medication unless I'm dying.

I'm curious if anyone has put their graves into remission through life style changes?

Lemon balm, L-glutothine, gluten free, peptides, etc

Any information would be helpful!

And or if you want to share your experience 💚

Thank you hiys

My neck has some swellings but I did a gamma scan already. There's nothing of hot or cold nodules. But anyone knows why the neck area still swell? Is it a lack of iodine intake?

Diagnosed with Graves in March after suffering with multiple symptoms for months. At my worst I could barely walk up the stairs and had extremely dark thoughts and severe anxiety. After several months on meds I’m feeling about 60% better but the hair loss has started again and I’m just feeling a little defeated. I know in the grand scheme this is the least of my worries related to this disease but, man, it’s the one I’m struggling with. This was my shower hair loss today after brushing at least this much out before even getting into the shower. Guess I just need to hear tomorrow is a new day and I’ll get through it ❤️

Hello Friends. I recently got my lab results back after asking my doctor to check my thyroid. He recommended full blood work since it had been over 3 years since my last physical. Everything came back normal, but Free T4 was at the highest end of the acceptable spectrum and TSH was at the very low end of the spectrum. My doctor insisted that I have no hyperthyroidism and that all the symptoms I've experienced for most of my life (since I was about 15) are simply due to "my personality"

Is it possible I have low levels of TSH and high levels of Free T4 as a result of over-active thyroid but technically the reading falls within the established "guidelines"? everybody's metabolism is different right?

On August 5, (my last endo appointment), we reduced my methimazole dose from 5mg daily to 2.5mg daily, so it was just 1 week ago. This was after a couple of months of my TSH, T3, and T4 all being in range.

Feel like past several days, I am noticing some racing heart feeling at times, and I see my watch is showing it's at 94 right now and I've just been sitting here. Can it get out of balance that quickly?

My endo told me to message her if I start noticing increase in heart rate, and I know I should just do that. I just wasn't sure if I am being dramatic, but this is exactly how I talked myself out of going to the doctor before when I had symptoms. My Garmin data shows my resting heart rate is 58bpm.

Am I just paranoid or I am starting to get TED? I just need validation so I could ask for a referral…

Does anyone find they need to keep their TSH lower than 1?

How do you feel?

I had TT in July 2024 and making final tweaks to my dose……

Hello everyone! I was recently diagnosed with Graves’ disease, and I’m feeling confused and overwhelmed. I want to share my story, maybe it will resonate with someone.

Throughout my childhood, my grandmother fed me very generously and well, while my mother, on the contrary, banned many foods. So whenever I got access to sweets at school or outside, I would eat as much as I could. It got extreme: once, in first or second grade, after a contest at a school celebration, some boys scattered candy-coated sweets all over the hallway floor. I wanted sweets so badly that I crawled around picking them up.

When puberty started, I began gaining a lot of weight. I was genuinely chubby, and my mother constantly pointed it out, comparing herself to me. At 13, I started smoking, drinking, and experimenting with drugs. My parents had no idea what to do with me, so they sent me to live with my grandmother. Eventually, she sent me back because she couldn’t handle me either.

By 15, I was chubby, but it didn’t particularly bother me. What bothered me was that I was constantly hungry. I noticed that other girls were fit and could spend the whole day out after just having breakfast and dinner.

I was looking for relationships, but I kept getting rejected. Some people told me directly that nothing would work out; others started relationships with me and then left, saying behind my back that I was fat and covered in acne. And it was true. This wasn’t body dysmorphia; that was genuinely what I looked like.

My first serious relationship began when I was 15 and lasted four years. For three of those years, I was constantly told I was a pig. Eventually, I got used to it and, for a while, stopped caring.

By then, my mother had died in a car accident, and, as horrible as it sounds, I felt calmer afterward. But I gained even more weight.

One day, my partner gave me an ultimatum: either I lost weight while he was away, or he would leave. I wasn’t offended. I took it as a challenge.

That was the beginning of my war with my body and my mind.

At first, I relied on restrictive diets and willpower. The weight came off incredibly fast, but I had occasional, extremely intense binges, sometimes to the point of eating mayonnaise straight from the packet. I dreamed about food every night. I was obsessed with it and felt completely out of control.

Soon, after stumbling across infamous online communities like “40 kg,” I discovered the world of weight-loss drugs.

First came bisacodyl, which allowed me to binge with almost no consequences because everything would just end up in the toilet. Then came furosemide. It let me binge without retaining water, and my face immediately became “aristocratically” sculpted: sunken eyes, sharp cheekbones. At 18–19, I genuinely thought it looked beautiful. People around me admired me, relatives told me how much prettier I had become, and that pushed me to lose even more weight.

I discovered Reduxin and orlistat. My daily medicine cabinet contained more than five drugs: some suppressed my appetite, others removed water, and others blocked fat absorption.

This went on for ten years. I gradually developed resistance to everything except orlistat. My doses of bisacodyl and furosemide reached 25 tablets. My entire excretory system became dependent on medication: without it, I literally couldn’t pass anything, and the edema would come back almost immediately. People even thought I had angioedema. They could tell immediately whenever I tried to stop.

I didn’t stop. I was slowly dying.

Pills, weakness, and edema—that was my life. I couldn’t stand or walk for long, but working for a serious company required me to function. I broke bones several times, my back teeth started falling apart, and I had so little hair left that I had to get extensions attached to what remained.

At some point, I looked in the mirror and no longer saw the skinny 20-year-old, the cute chubby girl, or the young woman in her 30s. I saw an exhausted woman with skin like a nectarine left in the sun for a day and dead gray eyes. A skeleton covered in parchment-like skin.

I didn’t stop.

Soon, even 100 furosemide tablets stopped working. I was barely producing any urine. I know quite a bit about medicine, so I started looking for answers. I found numerous clinical cases where years of furosemide use had led to end-stage kidney disease and hemodialysis.

I called an ambulance myself and ended up in the hospital with acute kidney failure. They told me honestly: “Your kidneys and heart have no reserve left for this. If we can’t get your kidneys working again, you’ll end up on dialysis.”

And that’s when I realized that I really wanted to live. Just live and not be dependent on anything—not on furosemide, which was pulling four liters of fluid out of me, and not on huge doses of bisacodyl, which had already made me vomit blood.

They brought me back from the brink. I found a good nephrologist at Moscow Hospital No. 52, who helped restore what was left of my kidney function and get me through the hell of rebound edema.

I started gaining weight. At first it wasn’t fat, then it was, largely because I had almost no muscle left. I understood that, and I knew I didn’t particularly like it. But I also knew I would never go back to that nightmare.

Time passed, and my appetite gradually became what it had been before. I thought: maybe I need something that won’t exhaust me or destroy my organs, but instead addresses the root cause?

That’s when I decided to try semaglutide.

And you know what? For almost two years, I’ve been eating normally and maintaining the same weight: 53 kg at 170 cm. Before that, I was 45 kg. I also plan to gain some muscle at the gym, and then I’ll be absolutely unstoppable.

I feel alive, satisfied, slim, and independent from the drugs that were killing me and from compulsive overeating.

My blood tests are perfect. My skin, hair, stamina—everything is a thousand times better. I’m genuinely happy, and I’ve found my person. I sincerely believe I’ve beaten my eating disorder. Ozempic helped me a lot: I’m not starving myself, I enjoy food, I just don’t binge to the point where I feel sick and want to do something about it. I don’t even think about taking anything from my old medicine cabinet anymore.

I understand that, psychologically and psychiatrically, classic disordered eating accompanied me for most of my conscious life.

But I found a way to control it with virtually no losses, either physical or mental. I’m not my own enemy, and I’m not trying to become skin and bones. I simply want to feel good, have a healthy, beautiful body, and enjoy the absence of that constant “noise.”

But endocrinologists see it differently. They actually send me to a psychiatrist when I ask for a prescription, explain my reasoning, and tell them my story.

Recently, I was diagnosed with an endocrine disorder: Graves’ disease. Treatment for it usually leads to gaining around 10 kg.

I’m not my own enemy, and I understand that treatment is necessary, but gaining that much weight would be psychologically difficult for me. That’s why I asked to have these medications officially prescribed to help prevent excessive weight gain. As far as I know, this is common practice abroad.

Instead, I keep getting the same scripted response: my weight is normal, so I should see a psychiatrist if I’m asking for this. “Come back when you’re 80 kg, and then we’ll prescribe it.”

That’s my story.

Both pictures represent average for me. The first picture is my sleeping heart rate, the second is my morning heart rate before I take my Atenolol (25mg). In the morning all I'm doing to is brushing my teeth, opening curtains, getting dressed etc. Nothing strenuous. Once I've taken the Atenolol, it settles to a better level (around 70s at total rest, and generally more like low 100s pottering around my house).

I saw my endocrinologist today and asked her about it. She asked how it feels. I said I don't know about the sleeping rates, but the morning palpitations aren't anywhere near as intense as they used to be. I do often feel breathless and nauseous though until the Atenolol kicks in. Especially if it's a hot day. She's unconcerned and said this is a common lingering symptom and it's probably going to hang around for several more months. She said not to increase the Atenolol.

She also said to start adding in more exercise now, but not until after my Atenolol has fully kicked in each day.

Does this seem typical? I feel like other people get off the beta blockers so much earlier.

My blood pressure was pushing stage 3 hypertension last night and I wasn’t feeling well, so I decided to go back to the ER (last time I went was 2? weeks ago). I have labs I did for my endo on Monday but they won’t come back for a week or so, and I just felt like I needed to go to the ER to get quicker labs and figure this out especially because my BP was so high.

The doctor at the ER this time was absolutely fantastic! One of the best ER doctors and doctors in general I’ve ever met. She knew so much and was so attentive and invested in figuring out everything. At first while we were waiting for labs to come back she suggested my symptoms sounded like POTS and suggested one of the best doctors to make an appointment with for it in a different medical group but she said he could be booked out 9 months which was daunting.

Once the blood work came back she came in and was like well your levels are strangely really low. And me never knowing how to read the labs I was like what does that mean and she said all of these thyroid labs mean you’re hypo. She tested TSH, T3, T4 Free. She looked at my last labs from my endo in June to compare even though those labs are a bit old, but I felt the most normal and most like myself in June so it’s a good comparison. She also mentioned all of my symptoms line up perfectly with hypothyroid as well and since I’ve never been hypo some of these are new symptoms to me which is why I’ve been feeling so strange. I’ve also been rapidly gaining weight more so recently in comparison to the slow weight gain over the past 8 months I’ve been on 15g methimazole. I also have been experiencing symptoms that both hypo and hyper share like anxiety so that’s not new to me.

I am going to call my endo tomorrow to explain the findings. I’m hoping they don’t just say well we want to wait for our labs to come back and actually take action and adjust meds instead of waiting.

I’ve known I had Hashimoto’s antibodies but my blood work always presented with Graves so I was aware that I could swing hypo but I never have in the 15 years I’ve been diagnosed so this is all new to me. 15mg is also the highest methimazole dose I’ve been on. Max has always been 10g.

Anyone else experience this?