Thyroid Eye Disease (TED)

Thyroid Eye Disease—the condition your eyelids give away

It hits women more often, though men get it too, usually a bit later in life. Major risk factors include smoking, being overweight, high blood pressure, diabetes, and other autoimmune issues like rheumatoid arthritis. About 77 percent of cases involve an overactive thyroid, though you don't always see those hormonal shifts right away.

- In my case, I can only bold the part about smoking. Back then.

Like I said, I was diagnosed about 4 years ago after dealing with constant viral corneal infections (three times in four months!) which messed up my vision ( 🙂 ). Turns out the culprit was my thyroid, stress, and smoking.

My specialist flat-out refused to even discuss treatment options with me until I quit smoking (I was pulling four packs a day back then 😁).
So I quit. I went through all the withdrawal hell—another massive shock to the system—but eventually, my eyes calmed down. They receded a bit. Now, they just ache whenever the weather changes or my hormones act up. 😁
I use artificial tears and gel when I need to.
But lately, the pain is back, hard. It stings, and my eyelid won't close all the way when I squint, so my eye doesn't stay lubricated.
The pain after one of those nights where I "sleep through" the discomfort is fucking brutal. Now it’s constant. Every single day. I can't stare at a screen for long, I can't focus, and my vision is blurry.

I have a checkup at the end of August, so hopefully I'll know more then.

Patients usually notice it as a burning sensation or feeling like there's sand in their eyes. A lot of people complain about excessive tearing, but it's usually not because they're making more tears—it's just that the eyelid tension causes tears to spill over the edges. Less commonly, you might see lid retraction (where the eyelid pulls back like you're surprised) on the affected side, or ptosis (drooping lids) on the healthy side.
This would be my type 😬, just maybe not quite this extreme.
Come on, it's not *that* bad, not yet 😍

Anyway, I want to hear from anyone else living with this. What's your experience?
Why again? Why me? 🙂

Thyroid levels look great 👋
Eye's in a coma 👋
Shifted to something else. It’s not visible, but the pain is getting sharper and hitting both eyes more often 😠
Checkup scheduled for ten days from now 👋
Guess quitting smoking was all for nothing 😁
My nerves are shot
God dammit, life is brutal 👋
Heading to the beach this afternoon.

So, I’m trying to figure out how they actually do Botox injections when you’ve got that lifted cheekbone look caused by hyperthyroidism. What am I looking at here—what's the actual procedure like, and how long am I gonna be sidelined during recovery? Also, is it going to hurt like hell?

Hello,

To address upper eyelid retraction—where the lids look perpetually startled—type A botulinum toxin (commonly known as Botox) is injected into the muscle responsible for lifting the lid, the m. levator palpebrae.

There are two ways to handle the injection: transcutaneously or transconjunctivally. To put it simply, it’s either through the skin on the "front" side of the lid, or from the "back" side after the lid is everted and a topical anesthetic is applied. It requires a very fine needle. You’ll feel some discomfort at the site, though that really depends on your own pain tolerance and the needle size.

You can see how this looks in these two images*. Try not to let them spook you. 😉



When handled by an experienced ophthalmologist specializing in this treatment, the procedure is both safe and effective. One potential side effect is ptosis—essentially, the eyelid that was once too high might droop lower than intended. However, this is quite rare, and even if it occurs, it is temporary and eventually resolves.

The duration of the effect varies. Some studies suggest it lasts about 2 to 4 months, but since everyone reacts differently, it may last longer for some.

I don't mean to be repetitive, but if this is necessary for you, I suggest seeking treatment at the Mayo Clinic or Johns Hopkins Hospital. They certainly have the most experience with this specific procedure.

Best regards. 🙂
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*images sourced from the following works:

1. A single transcutaneous injection with Botox® for dysthyroid lid retraction, M-J Shih, S-L Liao and H-Y Lu;
2. Advanced functional oculofacial indications of botulinum toxin, C. Lee, d. o. Kikkaw, N. Y. Pasco, D. B. Granet

Hey

Thanks for the reply. They’re gonna call me in for my exams at Johns Hopkins Hospital soon, so I'll see for myself. Honestly? Looking at these pictures... they don't look painless at all—they actually look pretty terrifying.
At least now I know what I'm getting into. 😱

Olivia Moore51 said:They’re finding thyroid issues, which is great. :lux:
My eye was basically dead, 👋
but now it’s shifted. You can’t really see it, but the pain is sharper and hits both eyes way more often. :mad:
Had my checkup ten days ago. :lux:
Guess quitting smoking was a waste of time. 😁
My nerves are shot.
God, life sucks. :lux:
Heading to the beach this afternoon.

Wow. Talk about a complete 180. 🙏
Thyroid stuff? Honestly, I don't give a damn about that. :zen:
I'm doing fine, eyes too—well, slightly, if you look really closely. And yeah, the pain still pops up occasionally. 😁
At my last appointment, the people there looked absolutely miserable, just exhausted and pathetic. 😲
It feels like every other person is either headed for surgery or hooked up to heavy-duty meds.
And no, I didn't quit smoking for nothing. 😍