Graves - Bulging Eye - No Thyroid

[Jenna5]

Just wondering if anyone has had there bulging eyes from graves completely go away after total thyroidectomy? Before my TT I was placed on Thyroid Meds and my eyes did significantly reduced in size but they are still a lot bigger than before I had thyroid issues. I’ve finally got my weight under control and now I focusing more on my eyes and they are getting me down. I always looked like a shocked cartoon character 🙈Just hoping there is hope for them yet, and it’s not something I have to live with forever 🤞

[helvella Administrator Thyroid UK]

Not strictly an answer, because it discusses the thyroid side (mainly) rather than Thyroid Eye Disease, but I did post this very recently:

healthunlocked.com/thyroidu...

[Jenna5 in reply to helvella]

Its an interesting read. I think they still don't know enough about other factors affecting out thyroids, and there doesn't seem to be much hope for Graves sufferers. I had a TT 3 years ago and none of my symptoms have disappeared, even after my Endo said surgery would 'make it all go away'.

[Caesard]

No, they don't get back to original. The swelling subsides, the sight improves, the overall looks get reasonably better but they don't go back unless corrective surgery is employed to address exophtalmy, eyelid retraction, etc (e.g. Orbital decompression - I got that for the right eye as it was visibly outer than the left one. Now the right is on normal and the left is a bit visible but I can live with that, as I could have without surgery too)

Spooked cartoons - good one! :)))

[Jenna5 in reply to Caesard]

Praying mine are still getting smaller but they don’t seem to have changed much in the last year so that’s probably them for life now 😣 wish there was more research in this area

[Caesard in reply to Jenna5]

They get significant better after the hot phase of the disease. The truth it's they'll never be the same.

On the other hand one year is not enough to evaluate as final result. Weight control and optimum replacement dosing will help you even more over time.

Moreover, I personally learned that getting through all this leaves you stronger than you've began in more than one way. That can and will take you through

And, if it's really important for you, I told you, surgical option is available and the results can be fabulous in the hands of an experienced surgeon.

[Jenna5 in reply to Caesard]

It’s been 3 years since my TT, over the first year they reduced a lot but not really much since.

Yes it definitely makes you stronger, I think it’s just because I used to love my eyes, I’ve always had big eyes, they were my favourite part of me but now they stick out and I’m very conscious of them. Don’t get me wrong, they are nowhere near as bad as they use to be and I’m sure there’s a lot of people that are worst than mine but just gets you down sometimes.

I’ve got day and night eyedrops now that are definitely helping with the dryness. And I see an eye doctor at the hospital every 6 months to keep an eye on them (no pun intended haha).

I have just seen that they are in the final stages of a drug trial for TED so hopefully that’ll get passed and in the next few years it’ll be available 🤞

[Caesard in reply to Jenna5]

I don't want to shatter your hope but for you there is no other solution besides surgery. No other treatment can address the current scarring left by the hot phase of the GDO.

Also true, after 3 years most likely this is your end result.