[baku]

#1060328

Good Evening Everyone,

My name is Beverly. I am a 38 year old Chinese-American woman living in San Francisco.

Beginning in June 2013 after an unusually stressful event, I noted changes in my right eye. Between September and October 2013, during an even more stressful period, I noted severe sensitivity to light and discomfort (e.g. tearing, protrusion) in my right eye. I visited my optician who suggested Graves’ Disease. I was diagnosed with Graves’ Disease in November 2013 based on a high TSI value (279%) and a CT orbital scan. My lab values for the TSH and T4 have been normal.

I visited an ophthalmologist in December 2013 who suggested Singulair, a non-steroidal medication used to treat allergic asthma. No one I had spoken to, other than the prescribing doctor, had ever heard of Singulair being used for Graves’ Eye Disease. I began taking this in early January 2014 and noted significant improvement in the appearance of my eye and a lessening of symptoms, especially the congestion and double vision. (I am not suggesting that anyone take Singulair unless their doctor recommends it.)

In addition to Singulair, I take the mineral selenium, 1200 mg of ibuprofen, and many vitamins. I sleep on a wedge pillow and use an eye pillow to keep my eyes closed. I use eye drops throughout the day and ointment at night. I changed jobs in December 2013 to reduce my stress level. I am trying to eliminate gluten, dairy, nightshades, goitrogens, alcohol, and caffeine. I have also tried acupuncture, meditation, and yoga. I try to avoid salt (unless it is sea salt) and I try to drink at least 1.5 liters of water each day. I eat a can of sardines each day for their selenium content. I emphasize the word “try” because these are very difficult life style changes.

My most recent TSI lab value in January 2014 is 151%, which is still high. Again, my TSH and T4 are normal. I will see an ophthalmologist this week and hope that my eyes are okay.

This has been an interesting ordeal that has made me re-evaluate how I handle stress in my life. I am wondering if there is anyone in the Bay Area interested in having a support group.

Sincerely,

Beverly

[Kimberly]

#1181962

Hello and welcome! If you’d like to send your contact info to info@gdatf.org (or call 877-643-3123), the Foundation keeps a running list of individuals who are interested in support groups in different parts of the country.

We did have a couple of individuals who expressed an interest in leading a group in the SF area in the past, but the group hasn’t gotten going yet — sometimes life intervenes! (We recommend that support group leaders are at a point where they have been through treatment and re-defined their “new normal” before tackling starting a support group, which takes a lot of time and energy.)

I’ve not specifically heard of Singulair being used, but one of the presenters at our San Diego conference did mention Nasonex as an option. (As you mentioned, those who are interested in this approach should definitely consult with their doctors first.)

Wishing you all the best!

[shakira7]

#1181963

Hi Beverly,

I’m so sorry about your recent diagnose with TED, however, I’m relieved to read that your opthalmologist’s prescription has been improving your symptoms. It looks like you’re doing everything you can, to help reduce your symptoms.

I’m also of an asian descendant, and I’ve been dealing with my swollen upper eyelids since Sept 2013. It’s funny you mentioned avoiding salt, cause last summer I ate a lot of food high in sodium (soba noodle, rice noodle…etc). Then I noticed my upper eyelids swollen, so I thought it was the salt that caused this edema.

I’ve not officially been diagnosed with TED, but I suspect I have mild symptoms. I’ve been eating 3 brazilian nuts/day and me too, I use a wedge pillow. I think brazilians nuts have been helpful.

I totally hear you about the stress level that can trigger these conditions. I’ve always had issues with “stressful” jobs, so I’ve been in a position that is less demanding since last year, too.

I live in Canada, but please feel free to share with us your concerns and questions. I joined this forum in sept 2012, when I was first diagnosed with GD, and I think this is a great forum where I got to “virtually” meet other GD patients, although I wish I got to know them on another context a lot more “fun” than GD, ha ha.

In any case, take good care of yourself and thank you for sharing with us your experience. Be well!

Shakira7

[Author]

Posts