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.

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.

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!

Hi all! I was just diagnosed yesterday after symptoms hit me literally overnight a month ago. I just started methimazole (15mg a day) after my doctor confirmed her initial thoughts of Graves’ disease. I have had no other testing and imaging and my doctor did not discuss what this really means for me or what to expect during treatment. I live in an area with not so great health care and am planning on getting a second opinion on treatment or impressions as my blood work looks pretty dramatic in comparison to what I have seen for many. So my questions are…!

Does anyone else’s bloodwork look and feel as scary?

How has mathimazole affect you? How long did you feel it took for you to notice benefits from treatment?

Did you have any other testing done than bloodwork?

How do you manage everyday life and activity? I use to be super active and now cannot walk more than 5 mins before my HR reaches 165 and I need to sit down.

Anyway, I am overwhelmed by all this and just hoping for any helpful advice 🫶🏼 TIA

Hello,

so I have been taking methimazole for about 2 weeks until I experienced sever itching, redness, and rashes on my skin. My skin is also very sensitive to touch and turns red when i scratch lightly. It has been unbearable so my doctor switched to carbimazole.

This is day one of taking carbimazole and I have been trying to find out more about carbimazole. I found on the internet that carbimazole is apparantely the same as methimazole and that it will turn into methimazole as soon as you consume it. Obviously this is very confusing to me since I dont know who to trust (the KI chat or my doc).

And no, the itching is not because of my high numbers. I only started taking meds since two weeks and never experienced any itching or rashes. Have been diagnosed a year ago and was stable, then slightly off etc etc..

Doc seems a bit annoyed by all my questions so I thought Id asked you guys since it seems people here have a lot of experience and knowledge. Ill ask the doc later but I m just curious about what you guys, my fellow graves diseases sufferers experienced. Thanks!

Desde mayo que estoy en tratamiento por graves, y en un inicio el medicamento (20mg) me generaba mucha picazón lo cual disminuyó con un antialérgico y la última vez que fui al doctor había subido 3 kilos, me quería morir porque siempre he sido muy cuidadosa con mi peso y además el próximo año me voy a casar ! Efectivamente yo sentí que estaba comiendo más así que decidí bajar la ingesta calórica y hacer ejercicio ya que el doctor me había autorizado, aún así hoy me pese y subí otro kilo más !!! A alguien mas le ha pasado ? Que debo hacer ? Será por el remedio ? Ayuda :(

Hello all, I am desperate and don't know what to do, I want to share my experience and many health problems maybe someone with similar symptoms can help me in any way possible, I am not seeking medical advice but maybe someone with similar experience comes across my post.

I am a female and was diagnosed with early puberty and put on puberty blockers at the age of 4, but my parents only administered 3 monthly injections in total and stopped the treatment, I had a normal childhood and puberty, got my first period at 13 but I always had weird symptoms, random skin rashes, pimples filled with puss and blood on my scalp, ears and legs occasionally, chronic constipation that had led me many times to the ER, excessive sweating, high heart beat, I was always tall and slender no matter how much I eat, I had thick wavy hair that kept thinning with the years, I developed severe anemia and was always bloated, my nails and hair grow fast but are thin, my nails are curved and this had led me to do surgery on my toes 5 times, later I developed dizziness and sensitivity to light and bright colors, I have low blood pressure all the time especially after meals, I had insomnia for a couple of years then followed by severe somnolence, next thing is derealization since 2012 and never once left until today, and then my lung collapsed a total of 5 times before getting pleurodesis on both lungs, I was diagnosed with Graves in 2017 with hot nodules, I always have very low TSH close to 0 and normal t3 and t4, I started Dimazol 10mg since 2024 with no improvement, in 2025 I developed a neurological disorder, CIDP and took steroids, still have CIDP today, I am in a relapse episode and we are trying to work this out with steroids and immunosuppressants, I still have all the symptoms and everytime there is a new symptom popping out, I am wondering if I am missing something or does Graves cause many health issues?

I am thinking of checking functional medicine too for the microbiome. I feel hopeless, and no one seems to understand what is going on.

So I have been struggling with crazy symptoms for 4 years....going on 5....it started 8 months after I gave birth to my last child. Brain fog, extreme muscle pain in legs and arms the worst but also back and neck, I cannot stand being hot, but also when I get cold I can't warm up, extreme exhaustion, unable to keep weight on, heart feels like it is racing at time and has even sent me to the hospital before.

4 years of this....I have been to primary Dr, gyno, and rehmuatologist the first year of symptoms. I basically was told by all of them they could keep monitoring but my tests were 'borderline' . I expressed I felt like from my research, I was presenting hyperthyroidism. Now I was really crazy to them. No one ever listened to how bad my quality of life has been with my symptoms. I gave up. I stopped going to the Drs. I supported my dad as he passed from cancer after, then lived a year in hell with my abusive, psychopath step son. Getting all them help when I was suffering myself.

I can't keep feeling this way, my husband and kids don't deserve this version of me. So, I chose a new Dr and decided to start over again. This time....was different. She listened to my symptoms, and she finally agreed to an ultrasound of my thyroid.

The results are in. My tsh is .3 total t4 6.4 t3 31% and free t4 2.0 . And the results from my ultrasound are :

The right lobe of the thyroid measures 6.2 x 2.0 x 1.4 cm. The right lobe of the thyroid is mildly heterogeneous without evidence of nodules. The left lobe of the thyroid measures 6.7 x 2.1 x 1.4 cm. The left lobe of the thyroid is mildly heterogeneous without evidence of nodules.

I know y'all can't diagnose me, but is this sounding like graves? When I had gone to the rheumatologist they said my blood results showed "possible autoimmune condition but cannot specify one"

Hi All!

I am a 28 yo female who recently (last Tuesday) was diagnosed with Graves’ disease. I initially went to my primary care doctor because I have been experiencing this intense itchiness localized bilaterally at my shins. It got to the point where I was itching my legs they would nearly start bleeding and result in scabs/ discoloration all over my shins. The MD had no idea what could be causing it and just put me on an anti-histamine and decided to run labs. I got a call the next day with my labs showing I had a very hyperactive thyroid. The endocrinologist called me to make an appointment ASAP and I was to start meds immediately. I had my F/U appointment with the endocrinologist where she diagnosed with Graves’ disease. She spoke about the treatment options and complications with pregnancy. I left my appointment so emotional and shocked. I have lived such a healthy lifestyle- working out 5x/ week (Pilates and weight lifting), walk my dog 2x day, active job as a physical therapist, buy mostly pasteurized/ local food. No other medical history.

Now looking back I oversaw so many symptoms but I thought it was possibly because I try to lean out for summers. Some symptoms include:
-weight loss
- generalized weakness & muscle loss
-anxiety
-leg tremors (more recent)
- high heart rate

I don’t want to let Graves’ disease define me. I hope to have kids within the next 2 years. I pray I go into remission. My question to you is:
- is there something you began implementing that helped you?
- any additional labs I should ask my doctor for?
- is it worth seeing a holistic doctor?
- what symptoms did you experience if you have TED?

Thank you if you read this far 💕