[Anonymous]

#1055975

Hi:

Just want to help. My mom has had Graves’ for 18mos. The eye problems
with her have been the biggest problem. With the bulging has come double
vision, blurring, etc. She has had, in my opinion, an unfun and unfair
life. Being in her “golden years” she has come back to one of her greatest
loves, the love of painting. It gives her strength, joy and contentment.
Exophthalmos is taking that joy away from her.

As a son it breaks my heart to sit and watch her eyesight deteriorate.
If anyone has anything to share as far as surgery, alternative treatment,
advanced therapies, advancing studies and/or medical facilities I would
very much like to know.

I would like to help my mother to enjoy her gift for many years to come.
Your words, advice, help – would be very much appreciated.

Thank you,
Mark Bergen
Toronto, Ontario
CANADA

[Anonymous]

#1162256

Can anyone out there help me with this. I have had Graves Disease for 3 and 1/2 years. I had radiation treatment and been up and down on throid pills. Now my eyes have worsened and I have to seek an eye specialist in this field. Just first time on bulletin board and now I realize this is going to just keep affecting me. I have been told there is good care for exophthalmos at Iowa Unniversity Hospital and are thinking of going there for the consult. I live in western NY. Thanks for any suggestions, would like to hear from anyone who has the eye problem.

[Anonymous]

#1162257

My 15 year old son has been diagnosed w/ this by an opthalmologist (SP?) No mention was made of Grave’s disease but all research engines I am encountering suggest this. He has a bulging eye. The doctor wants to look at photos over the past five years – our next appointment & then he said that a CT scan may be in order. Our son is a distance swimmer (was top 16 in the nation as a 13-14 year old) so fast heart rate is not a question. Could being in great shape mask some symptoms? His hands do tremble & he can’t keep on weight (but he is 15 & swims from 8 to 10 miles a day). His times have not lowered in the past 6 months & we only noticed the eye about 2 months ago. He does say he was tired in some recent races which we never used to hear. He figgits alot – but is that a symptom or because he is 15. What do y’all think? Any help would be greatly appreciated.

[Anonymous]

#1162258

A CT scan will show whether your son’s exophthalmos in one eye is caused by swelling of the orbital muscles as in Thyroid Eye Disease (TED), or by something else, such as a tumor. It’s possible to have Graves’ even with normal thyroid levels (it’s called Euthyroid Graves’ Disease).

Hopefully your son’s thyroid levels are being checked. A rapid heart rate isn’t always present with hyperthyroidism, especially when it’s relatively mild. (Mine was 60-70 on diagnosis, but it did increase out of proportion with exercise, and I had fatigue.) Hand tremors are a very suspicious sign of hyperthyroidism.

We’ll leave the diagnosis to the doctors, but if your son does have Graves’, we hope you will all come here for information and support. Best wishes, and let us know what you find out!

Dianne W
NGDF Asst. Online Facilitator

[Author]

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