[neskirimli]

in reply to: After the surgery.. #1185368

Thank you Liz, for all the info! Really appreciated!

Maybe my main problem is that. Apparently I couldn’t find a doc who was experienced enough about Graves. Cause he said Graves will be gone after TT, eyes wont be affected anymore etc. That was the misguided part. And its been 3 year but my TSH goes up and down in every 2-3 months.
My epicurize report says TT was successful, all of it was taken away. So.. And I’ve had all other things checked. And they all are fine, only short a bit of D vit but I’m getting it too now. Hence I’m having hard time to understand whats the problem.
And as this disease is not that common in my country I’m not sure if is there any doc genuinely knows Graves.

Anyway.. I’ve found another doc now. After some search. He seems he might know Graves better then others. And this one speaks very different then the previous. He says TT was a mistake. He says under eye surgery was a mistake. He says the daily Euthorox scale should be same each day or else it cant be balanced where my old doc was saying total weekly dosage should be same each week. All these are confusing to be honest. Its hard to understand if the treatment is not going well while your doctor says “this is normal”. You read and read but at the end there is a doctor saying “this is what it is, don’t confuse yourself with other stuff”. So you have to believe him.

About the eye attack, I don’t know if I can find an experienced ophthalmologist on Graves while its hard to find experienced endo. I’m thankful at least I don’t have bulging or diplopia or so. But I’m afraid of having them too. Cause I saw that you’ll never know what comes next.

[neskirimli]

in reply to: Lid Retraction Surgery #1185177

Its been 2 years I had the traidektomi. I waited for a year for my eyes to settle. And I feel lucky that my eyelid that retracted, almost came down to normal levels. But not my under eye bags. Then I had a surgery to remove my under eye bags. It definitely wasn’t a successful operation as after 6 months half of the bags were still there. Furthermore I still have my under eye swallows time to time. And I feel my eyelid moves up or down time to time. Well its very small movements like 1mm but still.
After experiencing all these I am now at “if its not too bad, don’t touch it” level.

[neskirimli]

in reply to: TED and treatments? #1182950

Hi Kimberly,

I am very well aware that we are all patients. I read lots of topic and found very very usefull. First of all I want to thank whoever built this page and also you and others like you trying to make us less lonely with this disease!
Thanks!!
No one can understand how a person can feel this lonely and helpless other then who has that kind of disease..

1. Actually medication can stabilize my disease. I have hyper and I am down to 1 tablet per day now. My long term endo says as long as my levels are ok and my liver takes it we need to continue on drugs. But this eye conditions really scares me and it is not stable. I really am afraid exhophtalmy will occur (

2. None of the doctors I have seen suggested steroids because of the side effects. And they all said my condition is not that bad.

3. The last endo I saw simply said, after 18 months if drugs couldn’t heal you it will never heal. And since the time passing your eyes will suffer more. He also said a good surgeon can remove the whole tissue how small ever it is. But my long term doc said it is too hard to do so.
I’m planning to see more prof endos now. But it is always helpfull to get info from those who has past experience and knowledge like you

Thank you soooo much for taking time and responding. Really really appreciated..

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