hi, I was looking for support from anyone that has graves disease. I’ve had my condition for about three years and for the past two years it’s been fluctuating on and off on and off specifically my levels so I go from hyper to hypo hyper hypo hyper hypo i’m currently hyper again and it’s been taking a big toll my mental health because recently I was put in the emergency room for what it feels like the billionth time and I’ve just given up on everything I feel like I’m never going get better. I can’t go to school because i’m constantly on and off from feeling good to bad. I can’t plain spontaneous trips because what if i feel bad. I can’t go on walks. I can’t move. Not to mention I feel like Insurance sucks. It took me the recent visit to the hospital to just get a referral for an endocrinologist in the US. I’m tired of the terrible health system doctors that dismiss how I feel I want a thyroidectomy at this point to just get this all over with. I don’t even want to try radioactive Iodine because I am just truly over this and severely depressed. I have no support at home my mom blames my condition on not eating at the right times but I eat at the right times. I just want support. I want to know it will get better because it seems like it just gets worse and worse every year. I’m hopeless and feel like my life is going down the drain. can anyone tell me the process of getting a thyroidectomy for graves.

My Dr doesn’t go by or use tsi or Trab levels and I have to request that she adds them to lab panels (specifically the times she’s tried to taper me off without even checking). We also haven’t ever discussed long term care plans regarding what will happen if I am not able to reach remission. I’ve brought it up during our last appointment and she says she doesn’t think it’s really worth talking about because 50% of people will reach remission.
So we’re not even going by my history and labs? We’re going by some number she’s seemed to have made up.
Anyways I just don’t feel that I’m being listened to or taken seriously. There aren’t many options for endocrinologists in my area at all and I will have to travel to see a new one. I guess I’m just feeling a bit low from it all.

Hi everyone,

This might not be completely Graves' related so sorry if this doesn't belong here.

But over the years I've become quite unwell, I thought once they finally diagnosed and treated the Graves', that would've led to me feeling better, but it hasn't. Around the time I got diagnosed with it, I also got diagnosed with CFS and Fibromyalgia, both of which I've questioned since but never really got a clear answer. I don't think I have Fibromyalgia, yes I suffer with widespread pain but it's nowhere near the level that other people experience. CFS - yes, maybe I do get extremely tired sometimes to the point it hurts, but I'm also a terrible sleeper and have a partner who snores and twitches sooo...

Anyway, my last few blood tests (maybe for a year or so) my ALP has become lower and lower and is now at 15 L/U. Dr Google says this could be x, y, z.. and if I have certain symptoms I should speak to a healthcare professional, but they keep fobbing me off saying it's normal. Please help, I'm 36 years of age and live the life of an 80 year old due to pain, exhaustion and just generally feeling meh.

Where do I go? What do I do? I'm in England btw and this is the NHS (and who I work for, ironically).

Thanks a lot,

A grumpy lady x

Hi All!
I was diagnosed with Graves’ disease at the end of last year and have been on 5mg of Carbimazole daily since November 2025. Everything was going great until about a week ago when symptoms came back fast and strong out of nowhere (Anxiety, palpitations, shaking, dizziness, weakness, hot face etc) while still taking the exact same dose I have been on for a long time and my recent blood test last month being normal.

The only thing I had changed In my life was started taking 5mg of Melatonin and Lemme glow gummy’s at the same time I was taking my Carbimazole. I have since stopped taking the lemme glow gummy’s all together and started taking the Carbimazole in the morning rather than at night with the melatonin.

My Question is: Has anyone had vitamins/supplements cause issues with Carbimazole or had it stop working because of them? Or do I have a bigger issue on my hands and stopping the supplements won’t change anything? My endocrinologist is a month and a half wait for an appointment so I’m freaking out about all the symptoms coming back and don’t know what to do.

Thanks :)

Please share your experiences and how you felt as well.

It has now been a full year since my total thyroidectomy. About two months ago, I started experiencing a strange sensation in my neck that is difficult to describe. I'm not sure whether it feels like scar tissue (adhesions), something stuck in my throat, or a very mild difficulty swallowing. The important thing is that it's an unusual sensation, and I can't describe it accurately.

For context, all of my blood tests have been excellent. However, my ultrasound showed a 6 mm calcified lesion, which has remained completely stable for the past year. My doctor reassured me that it is benign and nothing to worry about, explaining that it most likely represents calcified remnants of thyroid tissue that were destroyed by radioactive iodine treatment.

I'd really appreciate hearing about your experiences. Have any of you had a similar sensation after surgery? How did it feel, and did it improve over time?

Hi!
Has anyone here experienced thyrotoxic myopathy related to hyperthyroidism? If so, what symptoms did you have?

I’m currently experiencing symptoms that seem very consistent with thyrotoxic myopathy, and I’m trying to get a better understanding of whether this could explain what I’m dealing with or if it’s more likely to be something else. I’d really appreciate hearing about your experiences.

Hello there,

Wanted to ask has anyone givin up on everything?

I dont want to continue methimazole as I can tell its ruining my liver (through test as well) but I can't afford surgery and I'm getting worse and worse especially because of my job and a bad break up.

Becoming harder and harder to eat and breathe🫤

I truly feel there's no reason to keep going and need encouragement and any advice especially if you're going through the same thing.

Does anyone else have naturally big eyes and had your endo question you about TED? I didn’t really know the answer because it’s really hard to know if my eyes are more bulgy 😅

Throwaway account for anonymity. My wife is an RN. 2 years ago we moved to a new state and she had a near thyroid crash. She went hyperthyroid and lost 60 pounds in just a few weeks. Due to her medical conditions she's unable to take NSAIDs and can't do Tylenol due to potential liver damage. She's diabetic and takes insulin also. She lives with lots of pain, and since our new state is a legal state, started using cannabis for pain, which takes the edge off long enough to enable her to cope.

She's since gained back the weight she lost, plus more, and is Hypo now. She hasn't worked in 2 years since we moved, and is looking for a job now, which requires a drug test. She has gone over 2 months abstaining from cannabis, living with a lot of untreated pain, but it's still not enough for her to be able to pass a drug test for a job. She still tests positive for cannabis. One potential employer was flexible enough to order a blood test for her, and we thought this may show negative because she's been abstaining , but it was still positive.

Her endocrinologist has said that since she lost all that weight and gained it back, that the marijuana is now stored in her fat and she probably will always test positive for MJ no matter how long she abstains. Doctors just tell us "yeah that sucks, sorry" when we consult with them, offering no solution.

I thought there'd be a good chanced that some folks on this sub may have dealt with thyroid/metabolic issues complicating drug screening, and might have some advice on what to do. Does she have to lose ALL the 60 lbs again before she could ever pass a cannabis pee test again (hard to do when she's hypo now)? She's an awesome nurse with 30 years experience and we're afraid she won't ever be able to get hired again because of this. Like I said, we're in a legal state, but the laws have not caught up regarding employment rights around all of that.

We are really struggling the last 2 years without her working, supporting us and our adult autistic son on only my salary. Our medical debt is skyrocketing and we're still paying for the ER visit when she crashed out and are currently negotiating another payment plan as well.

Sorry for rambling on or if I included too much information, I am autistic as well. Thanks for any anecdotes or advice!

Hi,

I had TT two days ago and am slowly recovering. I follow a vegan diet high in soy protein.

I got a prescription for levothyroxine 112 and am now a bit afraid if it‘s enough because it says that a diet high in soy will inhibit the intake of levothyroxine to some extent.

To my fellow vegans/vegetarians here eating soy products like soy milk or tofu on an almost daily basis: how easy was it for you to get to stable bloodwork? Do you find yourself needing a far higher dose than usual if you go by the weight formula?

Thanks!

I recently was diagnosed as hyperthyroid after I had some bloodwork for missed periods.

TSH- <.005
T4- 3.6
T3- 16.3

My endocrinologist says this can be caused by Graves, thyroiditis, or nodules. She did mention that thyroiditis can be from a viral illness, so I think this could be a possibly since I am always sick. She also ordered the antibody tests but said it can take two weeks to come back. I’m very worried about these results and was wondering if anyone had any thoughts or similar experiences so I don’t spend the next two weeks stressing. This is all very new and a lot to navigate by myself. I’m scheduling an ultrasound of my thyroid next week as well.

Hi everyone. I’m a 24-year-old female and was recently diagnosed with Graves’ disease. These were my thyroid results:

• TSH: <0.01 mcIU/mL
• Free T4: 1.02 ng/dL
• Free T3: 4.1 pg/mL
• TSI: 0.52 IU/L
• TPO antibody: 398 IU/mL
• Antithyroglobulin antibody: <1 IU/mL

I recently started methimazole 10 mg once daily. I was also prescribed propranolol as needed, but my blood pressure tends to run low, so I am cautious about taking it. I am waiting for my endocrinology appointment to discuss my options.

My physical symptoms include weight loss, low appetite, shakiness, palpitations, occasional shortness of breath, hair thinning, excessive sweating, stronger body odor, head pressure, and severe fatigue. I sometimes feel feverish as well.

I feel physically weak, slow, and extremely sluggish. I have almost no energy to study, work, complete normal daily tasks. Even simple things feel exhausting. I sleep eight or nine hours, sometimes longer, but I still feel tired and could continue sleeping throughout the day.

I also have joint, leg, back, and foot pain. My feet are especially painful, and my legs can feel weak and heavy. The exhaustion and pain make it difficult to move around, stay productive, or take care of myself properly.

The mental and emotional symptoms have been the hardest part. My mental health has never been this bad. I feel depressed, completely withdrawn, and isolated from other people. I have no motivation or interest in doing anything. Everything irritates me, triggers me, or feels overwhelming. Even being around people bothers me, and I often just want to be alone.

I cry very easily, feel emotionally unstable, and sometimes react impulsively. I do not feel like myself anymore.

The brain fog is also severe. My short-term memory feels terrible. I forget conversations, lose my train of thought, struggle to recall information, have difficulty finding words, and sometimes cannot express myself clearly while speaking. When someone talks to me, I may zone out after a few minutes and realize I did not process or remember what they said. I cannot focus enough to study or retain information.

My general practitioner mentioned surgery, but I feel hesitant about both surgery and radioactive iodine. I am worried about making an irreversible decision and becoming permanently hypothyroid. I would prefer to preserve my thyroid and try medication or remission first if that is medically reasonable.

For anyone with Graves’ disease or another autoimmune condition:

• Did you experience severe fatigue, weakness, depression, isolation, irritability, brain fog, poor memory, or loss of motivation?
• Did you have joint, leg, back, foot, or muscle pain?
• Did your mental health and cognitive symptoms improve after your thyroid levels stabilized?
• How long did it take before you had enough energy to study, work, and function normally again?
• Were you able to achieve remission with methimazole or remain stable on long-term low-dose medication?
• What influenced your decision between medication, surgery, and radioactive iodine?
• Did any dietary changes help, such as reducing processed foods, avoiding certain foods, increasing protein, or following an anti-inflammatory diet?
• Did any supplements help with fatigue, deficiencies, hair loss, pain, anxiety, depression, or brain fog? I would only take something after checking with my doctor because I know certain supplements can interfere with thyroid disease or medication.
• Did improving sleep timing, walking, strength training, therapy, meditation, journaling, sunlight exposure, or another lifestyle change make a noticeable difference?
• What helped your mental health the most while your thyroid was being treated?
• Are there any blood tests or nutritional deficiencies I should ask my endocrinologist about?

I am not looking for a diagnosis or a replacement for medical care. I will continue following up with my doctors. I would appreciate any personal experiences, practical advice, or recommendations because I feel overwhelmed and unsure about what treatment path to choose.

Just a small celebration - was diagnosed in April and after a couple small med adjustments my T4 is 0.93 and my T3 is 2.4! (not sure what my TSH is as it just wasn’t tested this time) I get to decrease my meds now :)

I have been struggling with the timeline to get pregnant (as seen in my other posts on here) and while I’m still not there yet, I am excited and relieved to be in range and one step closer 🤍

Frequency and urgency to pee, edema, shortness of breath, hyperhydrosis, muscle aches, irritability, anxiety, I need this to stop. After months and months I’m at a breaking point. On top of everything disability isn’t going to start till after rent is due, and my doctors just don’t seem to care that I am near going off the deep end. Anyone out there wants to commiserate!?

I’m seeing my ophthalmologist tomorrow for a TED follow up appointment. I want it to be effective.

Any questions worth asking? Anything that you recommend worthy raising? What have you asked/discussed?

What treatments have you been offered on the NHS or socialised healthcare?

My TED isn’t severe to look at. My eyes were deep set and now they bulge. He can’t see it. Everyone who knows me can. At my 1st appointment he prescribed Cequa eye drops to improve the dry eye. My vision has worsened since Graves’ diagnosis, I’ve had severe dry eye, depreciating vision (now wear glasses), shooting pains, aching, pressure, headaches, inflammation, swelling at the temples, double vision, you name it.

Other than telling him it’s impacting how long I can drive and endure work (self employed Branding + Website Designer), I don’t really know how else to advocate for myself or what’s available on the NHS.

A year ago this month I was diagnosed with Graves. I started off taking methimazole and began to experience hives. My doctor had to pull me off the medication and put me on PTU. The PTU has gotten all my thyroid levels in normal range and is currently still working. The problem with it is that it causes high liver enzymes/liver damage. My doctor told me I needed to remove my thyroid because medication is considered “failed” due to hives/liver issues. My husband began researching peptide treatments (this is part of his career) and encouraged me to try gluthatione IV Infusions. The infusion has gotten my liver enzymes in normal range and pairs well with the PTU. I have been getting this treatment done once a month (since October of last year) or when my liver enzymes get high. I’m obviously not a doctor and I’m not saying this will work for everyone. But I wanted to share my experience with liver issues caused from PTU. This IV treatment is something that can be found at a medi spa and can be administered by a nurse or peptide doctor. I wanted to share my experience with this treatment. My endocrinologist had advised against the treatment at first but now has seen how it repairs my liver each month and wants me to continue using it as supportive care.

I just found out I’m pregnant and have been taking 5 mg of methimazole for the last 3 months. I found out I was pregnant right at 4 weeks. I immediately stopped methimazole but I can’t get ahold of my doctor. I am so scared and worried that the methimazole could’ve caused harm in the short amount of time taking it while pregnant. Has this happened to anyone? Did it everything turn out okay with you and baby?
I would like to hear your stories. Thank you so much

I was diagnosed with Graves at the beginning of this month. The past two days I've woken up with puffy upper eyelids. Yesterday it was gone by the afternoon but today it seem to stay all day mildly. I'm so scared of TED and eye changes. I can deal with Graves and the thyroid issues but I don't want my face to change. Does anyone have any advice or positive stories? I've spent the majority of today crying on and off after attempting to to my makeup because I'm terrified.

I have not been diagnosed but I feel like i have graves based on my symptoms. I am a heavy smoker before but lately i noticed my eyes get puffy. when I stopped smoking it returns to normal but when i start smoking it bulges again, I am also sensitive to light if i smoke. Now I stopped for a month my eyes is not bulging but I have a loose stools every day. Does graves caused by smoking go away if i stopped smoking?

Graves relapsed this year due to stress at uni and was put on a low carbimazole dose since March. Was off meds for a month now since having a blood test last month and came out euthyroid (TSH undetectable). Good news is that my thyroid gland is not swollen anymore. I wear a Fitbit and my resting heart rate is back to pre relapse.

Bad news is I’ve gained 10 lbs within a month which never happened before. I’m at the heaviest I’ve been even though I kept my 10k steps in daily and strength train x3 weekly. I also started running recently but I don’t see any changes appearance wise. I restrict myself to 1500 kcal daily by logging and weighing my food using a scale. I had lost 10 lbs before with this method so I know for a fact that the food I ate would not cause this much weight gain. Last relapse after I came off meds, I would gradually lose the weight I gained but that isn’t happening this time.

It hurts even more knowing routines that work before aren’t now. I was proud of the progress I was making towards achieving my goal weight yet I’m struggling with body image once again.

I don’t know what I’m doing wrong here. I know recovery takes time and I should be patient, but how long should I wait before I could finally see results? It’s really discouraging seeing the weight never goes down when I’ve been working hard.

Thank you for reading this long rant post. I know there are many of you with the same struggle so I wish you all the best and hopefully we could go back to our normal lives soon.

my t3 levels are trending a little low compared to my normal t4. i just changed states and am waiting to get in to see an endocrinologist, but im wondering what this means? my last endo said it could mean i’m not converting well, but what does that mean? was does poor conversion do to your body? i did gain a lot of weight from losing my thyroid, could that be why? what do i do to fix this besides upping my levo dosage?

thanks!

Hello everyone,

About 10 days ago, I went to the hospital to have my vitamin D level checked because I had been taking supplements for three months. Since I was already there, I decided to have some other blood tests done as well.

On the same day, I also saw a cardiologist because I had been experiencing a high heart rate for a while. I have an anxiety disorder and took antidepressants for eight years, but I stopped taking them two years ago. Because of my anxiety history, I assumed that the episodes of high heart rate were panic attacks.

I still don’t understand why this suddenly happened. I received four doses of the rabies vaccine at the end of May and throughout June, so I’m wondering whether that could have triggered it.

Most of my initial test results were normal, except for:

- TSH: <0.001

- Creatinine: 0.31 mg/dL (reference range: 0.51–0.95)

Of course, I panicked and started researching online. I became convinced that I had hyperthyroidism. The next day, I went back to the doctor, and he ordered more tests. The results were:

- TSH: 0.001

- Free T4: 2.89 ng/dL (reference range: 0.89–1.76)

- Free T3: 9.09 pg/mL (reference range: 2.43–4.2)

- Anti-TPO: 134.8 IU/mL (reference range: <13.8)

- Anti-Tg: <1.3 U/mL, which was within the normal range

-Trab: 4.43 (reference range: 0-1.15)

I told the doctor that I have a thyroid nodule that has been monitored for the past two years, although I hadn’t had it checked yet this year. He ordered an ultrasound and prescribed a beta blocker, Dideral (propranolol), to help control my heart rate.

Thankfully, the ultrasound results were reassuring. The nodule had not grown, my thyroid gland was normal in size, and there was nothing suspicious. Based on my symptoms and test results, the doctor suspects Graves’ disease. He ordered a thyroid scintigraphy to confirm the diagnosis, which I will have next Thursday.

I have been reading a lot about Graves’ disease, and I’m feeling very scared and overwhelmed. I keep worrying that the medication might not work or that it could cause serious side effects, such as liver problems.

I’m also wondering whether the likelihood of responding well to medication depends on how high the thyroid hormone and antibody levels are. Do these results suggest that it was caught relatively early? My TSH was still normal on March 26, so this seems to have developed quite recently.

Another thing I’m very anxious about is developing thyroid eye disease. My TRAb result was 4.43. Does eye involvement mainly occur in people with very high TRAb levels, or can it also happen with moderately elevated levels? Has anyone had similar results without developing any eye symptoms?

Hello! Just want to ask if anyone had experience with orbital fat decompression surgery. I’ve had TED since I was a kid and currently am 22mm proptosis. I really don’t like the way the whites of my eyes show so I am considering orbital decompression. The dry eyes and inability to close my eyes also bother me. I consulted with Dr. Micheal Kazim in NY and am scheduling an appointment with Oculotokyo (Dr. Kashima). Does anyone have any experience for the cosmetic improvement from orbital decompression or with the doctors i’m consulting with? Dr. Kazim was great with explaining everything to me so currently i’m likely going to schedule surgery with him. He suggested orbital fat decompression as my muscles aren’t enlarged (my lacrimal glands are). Thank you all!