My Story about Graves disease eye problems- by Sarah Biran
About 6 years ago, when I was 57, I was diagnosed with Hyperthyroidism, which I learned later that is called Graves’ disease.
The main and only symptom I had then was double vision. I had to see many doctors: optometrist, eye doctors, endocrinologist, many hospitals until finally, they decided that my eye problems are from Hyperthyroidism.
All these months while I was in treatment I continued working, I am a kitchen designer and my bulk of work is designing kitchens on the computer, so to be able to do this, I used to cover one eye.
I was treated with radioactive iodine (pills) for a few weeks and it seemed that it worked. My tests were perfect, the double vision was gone, the doctors were very pleased and all was well for the next 5 years.
In August 2008 I started to have double vision, painful dry eyes, extreme tearing, a lot of discomfort, but I live in the USA, don’t have insurance, so I suffered until the pain was unbearable.
On Nov 14, 2008, I went to Toronto Canada to get some help (I am Canadian). Obviously, in Canada, I had to see a few eye specialists that only prescribe teardrops, or tell you to tape your eyes at night.
I wasted countless hours in many hospitals with no results. My eyes were popping out, the right eye had an open space of one and a half cm (about 3/4″) and left eye was open for 1/2 cm (or 1/4″ maybe), both eyes were red and tearing.
One thing they all knew for sure: this is from Graves’, called Thyroid Eye disease (TED), but no real help. I was already on Tapazole because the thyroid test was a little abnormal. It was clear to me at that time that no endocrinologist knew anything about TED and no eye doctor knew anything about Graves’ disease (just the name).
Finally, I found Oculoplastic Surgeon named Dr. James H. Oestreicher, M.D., F.R.C.S. (C). This means he has completed highly specialized training in plastic surgery, as it relates to the eyes and their surrounding structures. Thus, he is better qualified to perform eye-related surgery than ordinary plastic surgeons. He performs lid lengthening (for patients with hyperthyroid “staring eyes”). You can read about him and his spectacular practice on the Internet.
He operated on me on Dec 5, 2008, gave me Prednison (steroids) for inflammation and an antibiotic ointment called Cloxan which I still use now.
I could close my eyes, but I still had to tape them at night. He also sent me to a hospital and I got radiation on my eyes for 10 consecutive days.
On Feb 4, 2009, I finished my radiation and Dr. Oestreicher suggested to do a major operation DECOMPRESSION. This is one thing I am still resisting, all I read about it is terrifying and horrible.
So on Feb 5, 2009, I came back home to San Diego, my condition didn’t improve much, the double vision is gone, but the muscles in my eyes have a mind of their own, cannot focus.
As of today, September 3, 2009, I still have pain in my eyes (right eye was always worse than left), I have a hard time driving, so I try not to, I always cover my right eye to be able to read, or walk, or drive, or function. I get headaches, tearing eyes, no light at the end of the tunnel for me.
Your book and emails helped me a lot, trying to be optimistic, but I feel disabled, I gained weight and can’t lose. Amazingly I never met ONE person that had or has this condition not in San Diego or in Toronto, so thank you for the website you started, it is very very helpful, you doing a great job.
Bless you, Svetla
Here is a picture of me before I got the radiation pills 6 years ago. If you need or want I will send you pictures after the eyelids operation and maybe a recent one.
For more stories of people, suffering and dealing with Graves’ Disease, graves eye disease problems, hyperthyroidism visit here: