[Anonymous]

#1020185

Dear Bobbie and Ski,
Thank you both so very much for taking the time to write such informative and supportive messages. I truly appreciate this. Just knowing others are “out there” experiencing (or have experienced) the same eye discomfort, embarassment, decreased visual acuity, and extreme light senstivity is helpful to me. 4 doctors have told me that in time my symptoms should decrease in severity, etc. Right now I don’t see how much worse my symptoms could be. I have to get up in a totally dark house and apply eye packs to both eyes for 1 to 2 hours. The swelling subsides a bit. I do sleep on 2 pillows. The burning persists almost all day. I’m fearful re driving as I’m so sensitive to light that I can barely see the traffic lights. I’ve curtailed my driving significantly. I’m close to quitting my job, as I’m fearful of making mistakes in entering data into a computer. I really need to work, even though I’m 66 years old — our financial status is not good. My husband had prostate ancer surgery last summer and his insurance didn’t cover many expenses. It’s difficult for me to be sensitive to his manly needs when all I want to do at night is put eye gel in my eyes and go to sleep. My husband tells me that I do close my eyes at night. The eye MD refuses to allow me to use the Lotemax eye drops prescribed by my previous eye MD as he fears an infection may develop. I’m starting on a daily course of Singulair and Zyrtec upon the suggestion of the eye MD as he has found success with this treatment. I’m continuing on the Restasis drops at least once a day. I’m trying to remain up beat and positive, but it’s very difficult. I’m wondering if I might be a candidate for a thyroidectomy as neither the eye MD nor the endocrinologist wants to do the RAI because of my TED.
Somehow I will get through this and will be a more compassionate, spiritual person, but it’s very difficult and I don’t want to lose my husband because his needs aren’t being met. I plan to see a counselor next week. Thanks you so much for reading this lengthy letter. Nina

[Anonymous]

#1076268

Hi, Nina:

Scheduling an appointment with the counselor was a good thing to do. It can help a lot to have an objective “ear” when things are as difficult as they are now for you.

I do not know what the Lotemax eyedrops are, or why using them would increase the risk of infection, unless they were eyedrops that were in a bottle that could be used repeatedly. I would be very interested to find out about this — it might help someone else at some other time on the board.

I ran a Search to find your earlier posts, Nina, and it appeared to me that you did not have a thyroid imbalance — that your major symptom was your eyes, with your thyroid functioning OK. If this is correct, and has not changed, you would not be a candidate for surgery OR RAI. It is sometimes confusing to have the eye disease called “Graves disease”, because we associated off-kilter thyroids with the whole thing. But it IS possible to have full-fledged TED without having a wonky thyroid. The thyroid might continue to function just fine for years in fact. Even in those of us who have TED and an affected thyroid gland, removing the gland does not fix the eye disease. The only reason to remove the thyroid is if the thyroid itself is making you ill by unregulated functioning.

I do hope you are seeing some improvement soon. I remember all too well those days when I had difficulty driving, and felt so isolated. It will get better over time.

Bobbi — NGDF Online Facilitator

[Author]

Posts