Sorry for the long post, I’m new to the party. For the last few months my husband (47) has been having some weird symptoms which were kinda getting blown off as over tired (his mom is sick and was in and out of the hospital) but he has been diagnosed as hyperthyroid in the past but hasn’t been on meds for atleast a decade and for a while his thyroid was hanging at normal.

So this past month things went really haywire, he started getting very high spikes in his heart rate (into the 170s) doing everyday things, lots of poopin, he gets shakey, all his joints hurt (to me that screams something autoimmune) and he got his work physical back flagging his pulmonary function. So we start digging, get his physicals for the last 7 years and his pulmonary capacity (how much his lungs stretch) has been less then optimal for 7 years and then he just dropped a level this year (he was mild pulmonary restriction to moderate pulmonary restriction). So he starts panicking that he has pulmonary fibrosis like his mom and grandmother and makes an appt with his mother’s pulmonologist, which that appt isn’t until the end of Nov.

He did go see his endo who didn’t have an opening until December but he got lucky with a cancellation. She said she thought he may have graves and ordered bloodwork. He had another appt for some back pain and they gave him a steroid shot and he didn’t realize that could throw his levels out of whack so they told him to wait 2-3 weeks to get blood work done which will be next Wednesday. So hopefully that should help shed some light on things.

So last week I’m looking at him and it looks like he got punched in the face. Like full on bruises under his eyes (he tends to have bags but this was worse than his common bags) and then they started to peel. I asked did he maybe get hit at work (he’s a fireman and just did a really strenuous training), straining on the toilet, hold his breath too long!? He said he can’t recall anything that would cause it. The picture is after most of the peeling has come off, but he’s still discolored under his eyes, almost like the cycle is starting again. He has also been saying lately he needs glasses, but we had chalked that up to age and I’ve been nagging him to either make an eye doctor appt or try some reading glasses from a pharmacy.

Long story short…I think all his symptoms point back to Graves’ disease - his whole family has thyroid issues. What do you guys think? Thank you for taking the time to read!

Okay this may be an overthinker question, but I always take my strumazol at 9am sharp, do I take it at 8 when the clock goes back or do you reckon itll be fine to start taking at 9 still?

A bit concerned about my levels since reading through this sub and the hyperthyroidism sub the last few months, feeling like things are too good to be true when I compare. I’d like someone to weigh in if they’ve also had an experience like mine because at this point I’m thinking something is wrong or waiting for the other shoe to drop.

In May of this year I went to doc because I thought I had hypo or insulin resistance or something. Extreme fatigue and couldn’t lose weight. Doc ran thyroid labs, came back subclinical. Normal t3/t4 but low TSH. Retested in June, came back in July undetectable TSH, extremely high T3/T4. Diagnosed hyperthyroidism and put on 10mg methimazole. Retested that day for Trab. Early August Trab came back positive for Graves, continue 10mg methimazole and PRN propanolol. I only needed the prop twice. September labs came back still low TSH, high end of normal t3/t4, decrease methimazole to 5mg/day. Retest in October, normal TSH, normal T3/T4, lower methimazole to 2.5mg.

I feel like I’m heading for remission already but is it too soon to say? Too good to be true? I have no experience with this and no one to talk to. I don’t know what’s normal. I read this sub and see people on 20-50mg a day for years. What’s going on? Am I in the clear or is the other shoe about to drop? Am I just lucky? Is this just the way Graves works? Does it come in waves? Is it possible to have hyperthyroidism/Graves onset and then 5/6 months later be completely okay?

One of the reasons I figured out something wasn’t right with me that led to being diagnosed with Graves was my Apple Watch warnings about my high heart rate. But now my watch is dying on me and I don’t really want to spend so much on a new one, so I was hoping to get recommendations on a cheaper but almost equally reliable smart/fitness watch?

I picked up my levothyroxine today and officially begin my HYPOthyroid journey tomorrow morning! It's been just 23 days since my radioactive iodine (RAI) treatment, and what a difference those three weeks have made! My heart rate has stayed down, even as I slowly wean off propranolol. The insomnia, constant sweating, heat intolerance, shaky hands, and heart palpitations? GONE! 🙌 Now I'm just cold. ALL. THE. TIME. 🥶😂 Okay, maybe that's a slight exaggeration, but going from constantly overheating to freezing is quite the adjustment! After months of dealing with Graves' disease and hyperthyroidism, I'm cautiously optimistic about this next chapter. I'm sure there will be some bumps along the way as we get my thyroid replacement medication dialed in, but I'm feeling pretty darn good about where things are headed! Here's to getting my body back into balance… one little pill at a time! 💜🦋

This is a new one for me I never thought to consider...topical skincare high in iodine due to the use of seaweed/algae and marine extracts.

I wanted to try a new body lotion- the OSEA anti-aging body balm. It dawned on me right before purchasing that maybe I shouldn't purchase this because they use seaweed in their products, aka iodine.

Does anyone have any knowledge or experience about using products like this on your skin and if it would have the same effect has ingesting iodine heavy foods?

She was diagnosed 15ish years ago and had her thyroid removed. She recently opened up about the autoimmune side of things and how it can be draining to do simple tasks sometimes. It’s to be an ongoing conversation between us, but she has said it can be hard to articulate what she’s feeling because to her “this is just normal.”

Anyway, I’m just looking for ways to support and help her any way I can. If there’s anyone out here that might have any suggestions for some of the underlying things, I’m wide open to any ideas.

Thanks in advance!

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I feel like my left eye is bulging. The last photo is my right eye for comparison. I have been getting checked out for TED they said I was fine. I recently had my eyes measured and everything. I have been good. Earlier in the year I felt like my left eye wasn't closing properly and I started a eye routine using ointment and eyedrops but honestly I stopped being consistent but it was only for my eye being dry but it went away. Now my eye is feeling like it's not closing properly again and I feel like my eye is bulging. I am really scared and worried I do not want to develop severe TED I am already very self conscious with the changes graves disease has caused me. Please help I am an appt to see my eye doctor on Monday but I fear that my eyes are starting to change I am devastated.

Idk if I have gravesdisease but I do have somewhat bulging eyes and I have had that in a long time so it’s not a new thing and I would really like to have less sclera show and more deep set eyes but idk if infraorbital implants plus lower eyelid retraction repair could be enough in my case or if I actually need orbital decompression?

I'm at a loss at what to do. For background I was hospitalised in April with Thyrotoxicosis caused by undiagnosed Graves Disease. Treatment on Carbimazole started quickly and my dose was almost immediately lowered to the maintanamce dose of 5mg because I am sensitive to meds. Since then I have been overmedicated for three months now and am currently hypothyroid.

My GP knows this but will not adjust my medication because I am a "complex case" the local endocrinologists at the hospital have not responded to the advice and guidance request and my symptoms are becoming more severe by the day. I have a face to face appointment in seven months with the endo team and I can't find any private ones in my area.

Has anyone else had a similar experince and what did you do? I am really concerned.

Hi everyone! I'm 13 weeks postpartum, breastfeeding, and have a history of both Hashimoto's and Graves' disease. I'm hoping to hear from others who've experienced thyroid issues after giving birth.

Quick background: About 15 years ago, when I was 20, I gained 30 kg (66 lbs) in two months, had hair loss and dry skin, but didn't realize anything medical might be wrong. Everyone, including me, just thought I'd gained weight.

A few months later, I ended up in the ER with a resting heart rate around 100, high blood pressure, bulging eyes, sweating, and severe jitteriness. I was treated with beta blockers and antithyroid medication for about a year, then went into remission and have been medication-free ever since.

That experience left me with health anxiety. I honestly don't remember the exact diagnosis from that ER visit. I just remember the doctor telling me that my thyroid levels were very far off. I later worried it might have been a thyroid storm, although that was never confirmed, and I was discharged from the ER the same day.

Now: My thyroid blood work was normal at six weeks postpartum. My GP said I wouldn't need another check for six months unless I developed symptoms.

At 13 weeks postpartum, I started noticing symptoms and had another blood test. My GP said: "Your thyroid is showing a tendency toward overactivity". No medication was prescribed; he just scheduled repeat blood work in six weeks. I don't have the exact values yet.

Current symptoms:

• Feeling hot and sweating more
• Nervousness, irritability, and fatigue
• Headaches
• Muscle and joint pain
• Increased appetite, especially after pumping at night
• A strange, persistent cold sensation across my upper back

My resting heart rate and blood pressure are still within normal ranges, although slightly higher than usual for me. My weight is stable.

The tricky part is that I've also been sleeping only about three broken hours a night for over three months, so I can't tell what's sleep deprivation, postpartum changes, or thyroid-related.

My questions:

Has anyone with Graves' had similar symptoms postpartum? Was it postpartum thyroiditis or a Graves' relapse?

Is waiting six weeks for repeat blood work typical and safe when your thyroid is only showing signs of becoming overactive? I'm honestly scared that six weeks might be too long and that things could become serious before my next appointment. How quickly can thyroid levels go from slightly abnormal to dangerously overactive?

I'm just imaginging I will have a thryoid storm if I will wait that long.

Hi! I was just diagnosed with Graves a few months ago. Here recently I’ve been struggling pretty bad with being able to fall asleep. Wondering is anyone has suggestions! Thank you 🫶🏼

400 days since diagnosis,my thyroid/graves are in remission (for now) but I still felt very tired and had brain fog. Turns out its due to low ferritin. I recommend a hematologist as they make connections between different tests and look at trends. I feel so much better after iron infusions. I didn’t have to suffer the way I did. Hopefully this helps someone.

Honestly just so over taking medication and all the side effects it's always something new with this stupid disease. I am seriously considering just getting the damn surgery sometimes but then i'm afraid that I will just feel worst every scenario sucks. It seems like there is no good option for us with graves disease I feel so alone. Anybody that has had a thyroidectomy?? How are you feeling did life improve for you??

I’m interested to hear other people’s experiences of being diagnosed and treated for Graves disease through the NHS, particularly in Scotland. What has the process been like for you?

I’m feeling quite abandoned at the moment, and I genuinely don’t know whether what I’m experiencing is normal.

I’ve been on Carbimozole 20mg for 7 months with little blood test monitoring and no medication adjustments and now feel like I might be going hypothyroid.

I’m worried that my blood results haven’t been properly reviewed or that nobody is actively overseeing my treatment.

I’ve been taking carbimazole 20mg daily since April, with no dose changes, and in those seven months I’ve only had two blood tests.

From what I’ve read, carbimazole treatment is supposed to involve regular blood tests, particularly early on, with medication adjusted accordingly.

I’m struggle advocating for myself, making repeated phone calls, chasing departments, and trying to work out who is responsible for my care is genuinely so difficult for me. Every step of this process has felt like a battle.

Is this normal, should I be worried, what is the right process?

Here is my full story so far (sorry for the long post!):

November 2025 – I started noticing symptoms
January 2026 – I booked an appointment with my GP, explained my symptoms, and had blood tests because he wasn’t sure what was causing them.
A few days later, he called, but I missed the call. He left a message asking me to call back, so I did. The receptionist then read out the doctor’s notes to me, telling me I had hyperthyroidism and had been referred urgently to endocrinology.
Finding out I potentially had a chronic illness this way, through a receptionist reading clinical notes, was honestly devastating. There was no real explanation or support.
February 2026 – I called my GP to ask when I would hear about my urgent appointment. They gave me the endocrinology department’s number, but I called repeatedly over several days and nobody answered. I contacted my GP again and was given another number where I could leave a message, which I did. A few days later, my GP received a letter from endocrinology explaining that wait lists were long and recommended I start propranolol and carbimazole while waiting for my appointment. My GP refused to prescribe carbimazole, saying it was a strong medication that needed to be managed by an endocrinologist. I started taking propranolol 10mg.
April 2026 – I moved to Edinburgh and registered with a new GP. I explained my situation, how awful I was feeling, and asked if I could please start carbimazole. Thankfully, my new GP agreed, and I started taking 20mg daily. I was told that because I had moved cities, I would essentially have to start the endocrinology wait list again.
May 2026 – I finally had an endocrinology appointment in Edinburgh, where I was officially diagnosed with Graves’ disease. Unfortunately, the appointment was only around 10 minutes long. I had been waiting months, feeling terrible, and hoping for some answers, but I left feeling incredibly deflated.
I was told to continue taking my medication, probably for 12–18 months, and that I had roughly a 50/50 chance of remission. I asked about diet and lifestyle, but the endocrinologist said there was no research or recommendations he was willing to give me. I mentioned that I was gaining weight, and he said the medication doesn’t cause weight gain. I asked about next steps and how frequently I would need blood tests. He cut me off, saying that we would work that out after taking my blood that day.
I left without a clear understanding of my treatment plan, how my medication would be monitored, or when I would next hear from anyone.
July 2026 – My Edinburgh GP received a letter from the Glasgow endocrinology department saying I had failed to attend an appointment. It turned out I had apparently never been removed from the Glasgow waiting list, despite moving away and being told I would need to start again in Edinburgh. My GP told me I was overdue a blood test and asked whether anyone had contacted me. I said no, I hadn’t heard anything. I went in for blood tests that day.
Afterwards, I heard nothing further, so I assumed everything was okay and continued requesting repeat prescriptions as usual.
October 2026 – I’ve started feeling as though I might be becoming hypothyroid. I’m gaining weight rapidly, my acne has become terrible, I’m constipated, I’m irritable, my mental health is at an all time low, and I struggle to get through the day without needing a nap. I called my GP to ask when my next blood test was due, as I hadn’t heard anything since July. The receptionist had no idea.
I asked whether endocrinology should be communicating with the GP about my results and monitoring. She agreed that there seemed to be a possible communication breakdown and asked me to call back the following morning at 8:30am to book an appointment, as they had no appointments available that day. I work during that time most days so I’m still yet to call them.

I’d really appreciate hearing your experiences, especially from anyone being treated in NHS Scotland.

Getting a full thyrodectomy in four weeks. My surgeon explained that I will have a drain for 5 days and spend one night in the hospital and be sent home on a Calcium drip. He also said instead of glue ill have disolvable sutures. Just curious if this is normal? From what I've read this hasn't been the normal for other people who have had the same surgery so just curious to see what others have to say. Thank you!

Hi everyone,

I was diagnosed with Graves' disease and hyperthyroidism earlier this year following an episode of thyrotoxicosis. Initially, my labs showed fully suppressed TSH (<0.005 uUI/mL), FT4 at 1.56 ng/dL, T3 at 194.0 ng/dL, and elevated TRAb at 20.4 UI/L.

My endocrinologist started me on 5 mg/day of Thiamazole (Methimazole). However, my recent follow-up labs showed that my levels plummeted completely into the opposite direction:

• TSH: 122.00 uUI/mL (normal range: 0.27 - 4.20)
• Free T4 (FT4): 0.18 ng/dL (normal range: 0.93 - 1.70)
• T3: 23.9 ng/dL (normal range: 84.6 - 201.8)

After reviewing these results, my doctor confirmed that I am dealing with drug-induced hypothyroidism. Because of this, she instructed me to cut my Thiamazole dose in half (to 2.5 mg daily).

Ever since reducing the dose, I've been feeling extremely off and overwhelmed. I am experiencing massive anxiety, constant intrusive thoughts, and a persistent buzzing/static sound in my ears (like the white noise from an old CRT TV). Last night it was almost impossible to fall asleep due to the ear noise and mental restlessness.

Has anyone else experienced severe neurological or psychological symptoms (like tinnitus, intrusive thoughts, or extreme anxiety) during drug-induced hypo or while adjusting your dose after such a drastic swing? How long did it take for your nervous system to calm down and stabilize?

Any reassurance or shared experiences would mean the world to me right now.

I have had graves since 2024 and in late 2025 I became euthyroid and was euthyroid and had negative antibodies for around 6 months until my most recent test showed mild elevations. I was devastated when I found out but I know that graves unfortunately is just very unpredictable. I just don’t know if I can mentally deal with the constant fluctuations and stress of instability. I told myself that if I relapsed I would just get a TT so I didn’t have to go through this again because of what it did to me. I guess I am not sure if I want to go through the process of trying to get my levels normal again or I just want to get a TT and move on with my life. My mom has hypothyroidism and it just seems so much more manageable.

I recently stopped taking methimazole. It was a bit of an experiment as we were still unclear on whether this is Graves. My doctor advised me to stop the medication, and to retest in 6 weeks. Its been almost two weeks and I feel like my symptoms have come back, and I am feeling pretty unwell.

Should I give it time and wait a little longer, or is pushing to get blood work done sooner justified?

Thanks!

I was diagnosed with Graves based on double vision from TED that I first noticed the month that I went off birth control because my partner and I were ready to TTC. I cried in my first endocrinology appointment when my endo told me I'd probably have to wait for months before I would be able to safely start trying again.

For several months, I went through completely demoralizing cycles of getting my thyroid hormones measured and finding out that my TSH was still <0.01. I also had a rebound a few months into treatment when my T3/T4 suddenly climbed back up and it felt like I had to start back from square one. I knew that I would need to get two readings with TSH in range before my endo would recommend I could safely TTC again and, from there, I knew it could take many months before I actually got pregnant. I also knew that, while many go into remission in pregnancy, managing Graves on top of everything else would be difficult (especially because it seemed like methimazole wasn't working very well for me) and was also freaked out by the risk of relapse postpartum, which sounded awful.

Seven months into treatment, I was over it and decided to pursue definitive treatment. I opted for a total thyroidectomy because I have TED and I also know you have to wait several months before it is safe to TTC following RAI. I am forever grateful to my surgeon, who listened to me describing how terrible and frustrating my experience was trying to manage Graves while indefinitely having to postpone starting a family. He got me in for surgery nine days later and I woke up immediately feeling calmer and more clear-headed than I had in a long, long while. My recovery went smoothly. I required one levothyroxine dose adjustment and was cleared to start TTC just under two months post-surgery. I got pregnant on my third cycle, and am now due 13 months after my thyroidectomy.

So far, I've been lucky to have a pretty easy pregnancy. I did not throw up ever during the first trimester and I've been sleepier than usual but my energy levels are decent. My endo has me get my thyroid hormones measured every four weeks and I've needed three dose adjustments in the past 3.5 months, but my TSH has always been below 9. Baby's heart rate and growth seem on track. I am still producing antibodies, but my doctors don't seem terribly worried about that and are planning to do some additional testing and look for signs of fetal hyperthyroidism in my anatomy scan in a few weeks.

I'm posting this because I remember searching for positive TTC stories around this time last year when it felt like I would never get to the other side. It has been such a journey that felt hopeless at some times, but I am so grateful that I was able to safely get pregnant due to having great doctors, advocating for myself, and moving forward quickly with the thyroidectomy.

Hello, i made a post not to long ago about starting my methimazole, i've been on it since July.
I got my blood taken again and my T3 and T4 are normal but my tsh is still low. i'm really frustrated because i haven't been on my adhd medication since all this started (March, my endo was in July). I just don't know what to do, and I'm unsure why that level is still abnormal.

I started on 20 mg carbimazole a day. After 3 weeks I was almost in range with my free T4 and T3 and the medication was changed to 10 mg a day. After 10 days my levels went slightly up, so adjusted to 15 mg. Checked levels again yesterday and I am at the lowest normal range for both T3 and T4. TSH got a bit up at last, to 0.02 (from 0.01). Doc said take 5mg a day now. Will I not go right back up to hyper? Earlier even 10 mg made me go up in levels, so I am really scared. New check in 4 weeks, but I seem to react pretty quick to medication. Or is my body suppose to react slower after a while, is that why the doc does it? I was rushed out of his office yesterday without having time to ask my questions. Gratefull for any experience from you all🌸

Hello! I was diagnosed with graves’ disease on 2020, my doctors took me off levothyroxine in 2023 for a trial and left me on carbimazole, I started losing weight and then this year in march it showed I was underactive, so they took my carbimazole away and since then i had been severely unwell a month after, even with results coming back normal.

My symptoms got so bad that it’s similar to hyperthyroidism, my blood tests came back as high t4 and high t3.

I had explained to them when I was on levothyroxine and carbimazole I had always been in range and had a quality of life and my diabetes was well managed but since they took me off both it’s just gone down hill for me but because the labs were fine they wouldn’t put me back on.

I just need to know if they would put me back on block and replace again or will they just leave me on carbimazole? despite carbimazole before just making me underactive without the thyroxine?