r/ThyroidEyeDisease

Hi everyone. I was recently diagnosed with graves disease. My labs are as follows: free T4 2.1, t3 normal, Tsh low, tsi 201. No symptoms except lighter menses and mild weight loss. This was discovered during an annual routine exam.

My Endo started me on methimazole 5mg daily. As soon as I started this med, I experienced mild tension/pressure below my right eyebrow and on the side of my right nose bridge after. I just had a retina exam 2 weeks ago and the retina specialist did not say that I have TED. I took selenium 200mcg twice on 2 different days: first day I feel nausea and heart racing, 2nd day I feel intraocular pressure so i stopped taking it.

I don’t think the pressure I feel is behind my eyes. It is more on the two locations that i described as above. I have no other eye symptoms except this. Can this be due to methimazole?

Feel free to skip around or to last paragraph for results and how I feel post op! Just making it as detailed as possible since I really wanted something like this when I was considering ODS.

Hey all! I wanted to make a post in case it could help anyone considering a ODS. My history is that I’ve had Graves’ since I was 3 years old which was discovered by my parents when they noticed my eyes bulging more than normal. I then underwent radioactive iodine (RAI) when I was around 10. Was told that that could worsen TED recently so if I could go back in time I likely wouldn’t have gotten it.

Now moving on as to why I chose surgery. I look fine. Normal to most people but I notice the scleral show in the mirror and wore large colored contacts everyday to hide it. I was also bullied a bit in HS with my ex-friend calling me names regarding my eyes and used what I told her about my illness against me. While I like to say I moved on from that I still wanted to see what I would look like without this disease. Finally decided to go through with it and got a consult in Asia as well as get an orbital MRI. They measured my hertel scores which was 21.5 and 22mm. In a top hospital in China they recommended fat as well as lateral wall decompression. They also talked about Tepezza (which is only around 10-15k usd in China for the generic brand!) but said it won’t help alot because i‘m in the inactive phase and at most reduce my Hertel by 2mm (also potential hormonal and hearing side effects) I was scared off by the quick consultation time and the fact If i got lateral wall decompression there will likely be an incision and I am very keloid prone.

Next, when I returned to America I consulted with 2 doctors. One in NY, the other in Tokyo. The office of the Tokyo doctor responded but I was off put that he suggested filling the fat to my undereyes (i’m 20 with no eye bags, don’t think I need that) and he quoted me almost 7 million yen extra for a foreigner fee. Said it was due to a variety of reasons but notably: translation team (despite me speaking Japanese), 3x consult time with doctor, anatomical differences (this part I think is BS as I am also east asian).

The doctor in NY is the doctor I decided to go to ultimately and I am glad I made this decision. I read up on all his works before I made the choice and despite no before and after photos on his website, I trusted him a lot more than the very sale-sy doctors in Tokyo and Beverly Hills. Especially because he does more complex cases as well I trusted I would be taken care of in his hands.

Now moving on to surgery day. My surgery was scheduled at 8:30 so I arrived at 6:30. There was a bit of wait but it was not bad at all. I was brought to the pre anesthesia area and changed, an IV was inserted and I spoke to my doctor one final time to ask him questions and confirm. Then I was finally wheel chaired into the OR. Anesthesia hit and next thing you know I’m awake in the PACU. My eyes looked really good right after surgery. No chemosis, no bruising, minimal swelling, normal movement, no double vision. The nurse couldn’t even tell I had surgery. At first I was a little bit nauseous and had a tiny bit of pressure in my forehead and pain but as soon as they gave me nausea meds and pain killers via IV I was chilling. I iced up and then had some food, the nurse then gave me IV antibiotics and steroids. Looked in the mirror and was very happy. The scleral show was pretty much gone (yippee to no lower lid surgery!) and my eyes were so much flatter from the sides. Doctor said they will settle more and final results will show at around 3 months. No exercise or flying for 2 weeks. They had me stay in the hospital overnight for monitoring in case of a hematoma but nothing happed so I’m getting discharged rn!

Thats about it for now, feel free to dm me with questions or if you would like a before and after (only one day out tho lol), or if you want to know which doctor ;) Good luck to all considering this surgery or getting it soon.

Wondering if anyone can give insight on TED relative to thyroid levels at a given time. For context I have had low normal labs (FT4 and FT3) for 9 months and recently slightly lowered my dose of methimazole to 12.5mg average daily (10mg/15mg alternating), previously 15mg daily. I had labs and my FT4 and FT3 are both in the middle of range. I’ve seen a lot of information about symptoms improving when labs are in the middle. Can this improve my asymmetry? My antibodies are still positive, at 216% but trending down.

Have graves and hashimoto antibodies.
Graves not currently active due to medication but one eye has been hurting, I feel pressure and it’s smaller than the other eye because eye lids are swollen. Sensitive to light and pain to move. But no prostosis. Will post pic in comments

​

Hi all,

I just want to kinda say this out loud, and not keep it in my head festering so please get ready for the pity party. I'm on week 3 of steroid infusions for TED and today I'm struggling...

The usual bad sleep I get is even worse. Probably a total of 11 hours since I got up on Friday according to my watch and although I'm exhausted I can't sleep.

I've put on 2 dress sizes in 2 weeks even though I'm calorie counting, my breasts have become huge and heavy and extremely annoying, my whole body looks and feels different already.

My joints ache with every movement and it even hurts to sit down because my skin feels tender to the touch if that makes sense.

I feel woozy and light headed but only for a few seconds and then think I've imagined it

When I eat even though I'm on stomach tablets I am rushing to the loo 20 mins later or I'm throwing up because of all the acid in my stomach.

I'm due to miss a treatment this week as I'm away and this was known about but I really don't know if I can go right now I don't know if I like myself enough to put myself through that.

I've started to keep my medication in a daily packs because there's so much of it, I've got a very long time just fobbed off the fact that I have Graves disease and said if it's just an overactive thyroid and I am really trying to come to terms with the fact that I have an autoimmune condition and I need to give myself grace, but today it is hard

Sorry pity party over.

If you listened thank you.

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.

Anyone know of good group for newly diagnosed TED? This is so stressful. I think we should start one.

Got diagnosed with Graves and TED in April of this year.

Only one eye got affected which is my right eye. My face looks like this o.O whenever I’m taking pictures or looking at myself in the mirror.

It’s suck, I felt so confidence because I lost weight & I felt so good about myself until I realize it was all the symptoms of Graves Disease.

Now I’ve gained 10lbs and I don’t feel the same way, I’m tired, I just want to lay down and do nothing.

I want to date and meet others but my eyes are making me hella insecure. I look like I’m shocked all the time, some days are better than others but man really hate this.

Hi everyone, I’ve been offered orbital decompression surgery on 21 August, so I don’t have much time to decide and I’m feeling really anxious.

I have mild TED and graves, but it still affects my appearance and self-esteem quite a lot. I’m considering surgery because of this, but I’m honestly terrified of having a bad outcome or being “botched”.

I’d really appreciate hearing both good and bad experiences with orbital decompression.
Were you happy with your results? Did it improve your appearance? Did you have any complications or things you weren’t expecting? And knowing what you know now, would you still have the surgery?

I’d especially love to hear from anyone who had mild TED and chose to have decompression.

My surgery date is coming up very quickly, so any honest experiences or advice would mean a lot. ❤️

I’ve had eyelid retraction for the past 6 months or so and although it’s stayed pretty stable, I’m asking for any advice on how I can improve my makeup techniques to try to balance my eyes. For context, my left eye is the retracted eye, my right is mostly normal but appears a bit droopy due to the eyelid height difference compared to the left. My eyes don’t appear bulgy. They don’t usually hurt. Only dry occasionally and I use contacts most of the time.

I used to love playing with makeup prior to graves. For anyone else with this problem, what are you doing to visually balance out the eyes?

Hi everyone,

I was just diagnosed with Graves’ disease in June, and my levels were pretty high, they can be seen in a previous post. The main side effect
I have experienced is a very puffy face plus missed periods. I keep looking back on pictures from just a few months ago and the difference is very evident.

My features are way less defined and my face is so round. It also feels weird and very stiff. I feel like I have to rub my face with my hands to get blood flow since it’s so hard.

I’m not sure if this is a side effect of Graves or possibly TED. I’m also sick all the time and have huge tonsils and recurrent sinus infections, so I am wondering if chronic sinusitis is also a possibility. My doctors aren’t being very helpful and I’m at a loss, I just want to look and feel like myself again. I’m even more worried since my medicine might make me gain weight and worsen my facial appearance.

I have normal thyroid panels but my eyes protrude, and I have all the nasty side effects of TED (eyes not closing all the way, especially at night, redness and irritation, etc.). An opthalmologist who specializes in TED diagnosed me from a CT of my orbits, so I'm pretty confident I have TED, and he says he's seen normal thyroid panels before.

Anyone have muscle pain in your eyes? My eyes hurt to move, especially away from center. I can't converge my eyes unless I'm looking straight ahead. I tend to move my head or body to look to the side. I know this affects my body and neck pain and stiffness (fibromyalgia, amplified by the TED).

I'm thinking of getting Lumvoa (rather than Tepezza to minimize the length of time I need to put up with the side effects) but I already have muscle spasms and awful muscle pain, and gut irritation, so I expect it to be hell. I'm thinking of having my doctor prescribe a fentanyl patch for the pain and taking a strong benzo for the muscle spasms.

Fentanyl patch rather than pills so I'm not tempted to take more than one at a time. (I've had problems with abusing opioids in the past.)

I'm be interested in hearing from those with similar symptoms.

Diagnosed with graves and TED in Jan 2025 and was put on methimazole. Had eyelid retraction surgery on my left eye in dec 25. My endo took me off methimazole in feb 26 after my t3 and t4 levels were back within range, but my TSI levels skyrocketed after stopping the meds.

Now I’m worried that my right eye (which had been stable until now) is beginning to protrude. My understanding is that TSI is what can attach to the tissues behind the eyes, causing inflammation.

Does methimazole lower the TSI levels or does it mostly impact t4 and t3? I’m worried she took me off of it too soon and I’m just so sad and frustrated.