[Anonymous]

#1076663

Dear Fellow TED patients,
Thanks much for your messages re your eyes. I am 65 years old and was diagnosed about a year ago with Graves Eye Disease. I am confused re the treatment recommended by my eye specialist. He has me on Restasis drops twice a day and now has prescribed a combination of Singulair and Zyprexa. Some people have apparently benefitted from this. I am very hesitant to try these meds without checking first with my new internal medical doctor ( who is very nice, but I just don’t have much confidence in her). I’m trying desperately to keep my part-time job as an office nurse, but my visual acuity isn’t good at times. I feel very embarassed re my appearance. Have any of you heard of the above mentioned treatments? The eye MD doesn’t want to try any radical treatment such as oral steroids because of possible side effects. I’m very confused. I’d like to start support group here in the Milwaukee area, but don’t know if I have the energy to do it. Any advice you might have would be greatly appreciated.
Nina

[Anonymous]

#1076664

Hi Nina,

I’m so sorry that you are having to deal with TED. I been dealing with mine since July and to me nothing has worked so far. I have not heard of either medicines to be used for TED but your doctor might know something that mine doesn’t. So far I have had orbital radiation, as high as 60 mg of prednisone which I’m still taking at a lower dosage and since July. I’ve used Lotemax and am currently using Cosopt twice a day. My doctor has talked about surgery with me, but isn’t going to do anything until I have surgery to remove my goiter. He and my Endrocronoligist agree that having RAI will only worsen my vision and problems. Good Luck and I hope you find someone that has used that method on here and is able to give you some good advice. Hang in there.

Diane

[Anonymous]

#1076665

Hi, Nina:

Another person you could check with about these medications is your pharmacist. Pharmacists are an under-utilized resource. They know a lot about medications, and if they do not know something off the top of their heads, they have research materials available.

Restasis is a medication that is supposed to increase tear production in folks with dry eyes. One of the negative developments with thyroid disease often is a change in the quality of our tears, making them lubricate less than normal tears. As a result, we can get corneal abrasions more easily, and there can be great eye discomfort. Many of us cope by using LOTS of artificial tears throughout the day. Recently, I’ve noticed more doctors prescribing restasis. I did not have that medication prescribed, so I don’t have any experience with it.

Seeing singulair prescribed was interesting to me. I have no “thyroid” knowledge to give you about it. Singulair is used to treat allergic rhinitis (nasal congestion, typically caused by allergies). I do not know why your opthamologist thinks this might help, but if you can get an answer to that question, I would be very interested to hear it.

It is extremely typical for our opthamologists to wait out the “hot phase” of the eye disease before taking corrective steps. There are a couple of very good reasons for this. First: the treatment options available have significant possibilities for adverse side effects. Basically, the main treatments are using steroids or doing surgery to remove bone from the eye socket to give the optic nerve more space (decompression surgery). So, our doctors balance the risk of adverse side effects with the degree of problem at any point in time.

Second (or maybe this should be first): what is known is that after the hot phase stops, there is a remission of symptoms of the eye disease. We may not go totally back to normal, and in some cases surgical treatment might still be warranted to correct some of the issues created by the eye disease. But because there IS an easing of the condition, if you go in too quickly with surgeries, you can overdo the correction, and when things settle down you might find that you need more surgeries to correct for what the first surgery did. If the optic nerve is not being threatened by the enlarged eye muscles, our doctors prefer to wait and see what happens over time. Of course, if the optic nerve IS under threat, doctors WILL intervene. So, the good news (in a way) is that your doctor is “watching” right now. That means he/she does not think your eyesight is currently in permanent jeapardy, and he/she is not subjecting you to the possibility of adverse side effects. The bad news is that you probably would like “something” done to fix this right now. I do know that it is very hard to wait this out.

I also know that the issues about appearance are significant with TED: I dealt with those issues myself, on a moderate scale. What I discovered while I was going through my eye disease was that if I smiled I looked better. Not good, perhaps, but better. I couldn’t fix what was going wrong, but I could improve upon it. It helped me to stop focussing on my looks, and allowed me to get back to being myself and interact normally with the people around me. It also helped my mood to watch comedies — anything that made me laugh, made me feel better. That also helped to make the time spent waiting out the hot phase a little easier.

You might try covering one eye when you are at work, if your vision is doubling. Yes, I do know that a patch draws attention to your face. (I toyed with the idea of decorating the patch with paints and lace, but never did it.) But the issue right now for you is trying to keep things as normal as possible — being able to COPE. And covering one eye can make some tasks easier.

I hope you are through with this ordeal very soon. And I hope some of these suggestions help.
Bobbi — NGDF Online Facilitator

[Anonymous]

#1076666

Dear grneyedlady,
Thank you so much for your response and for your understanding. My TED was also diagnosed last July and I’m obviously in the “hot phase”. I wish my eye MD would allow me to use Lotemax at least on a prn basis as it did relieve the inflammation. He is insistent that I not use either oral or topical steroids at this point. I can barely stand the discomfort especially at night. I’m trying to use the Restasis drops twice a day but the burning caused by these drops is severe. I don’t mean to be a ‘winer” s it sounds like you’re also experiencing much discomfort and are confused, in a sense, also re the different treatment options. What part of the country do you live in? I wish I could attend a support group for Graves’s Disease patients but there doesn’t seem to be one in the Milwaukee area. I plan to try to start one. It is comforting to know that others are experiencing the same physical and emotional stress that I am. Hope we can keep in touch. Nina

[Anonymous]

#1076667

Hello Nina,

Please, don’t call yourself a whiner ~ I think TED is one of the hardest things to handle, physically and emotionally.

Remember that your doctor works for you ~ it’s nice to hear that they have an opinion, but they need to convince you that it’s the RIGHT opinion before you have to do what they say (within limits, of course ~ no one wants the patient to “choose” something that will harm them). A lot of doctors use our respect for them in order to “be the boss of us” when it comes to treatment, and that’s just not right. Any strong opinion they have should be backed up with a detailed conversation explaining the reasons behind it. If you agree with that reasoning, fine, but if not, you should be free to choose certain treatments anyway. You may want to see a second opthalmologist for your eyes, just to see the range of opinions that are out there, and perhaps to find someone that is more compatible with you.

In the meantime, since you say you have discomfort especially at night, may I recommend that you raise the head of your bed? I have never had severe TED symptoms, but I still keep the head of my bed raised, and I know it helps. When I’m away from home and I sleep “flat,” my eyes start to swell pretty quickly. The advantage to having the entire bed tilted up is that you cannot “fall off” as you can if you prop yourself up with pillows, and you can still sleep “flat” against the bed even though your head is raised, which removes the excess pressure on your back from laying on a pile of pillows. We put a 4″x4″ under the frame at the head of the bed, but I think you can achieve the same results by using “bed risers” and only using them at the head. I will grant you that there is some effort associated with the tilt, but it’s solved my eye swelling and also my husband’s middle-of-the-night heartburn, so we both think it’s worth it.

Good luck to you!

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1076668

Hi, Nina:

In addition to tilting the bed. Are your eyes closing completely? IF not, you may need to tape them shut. There’s a fine type of tape that can be used to tape the eyes down while we are sleeping. And, find out if you can use the nighttime formula of artificial tears type products along with the Restasis. You would need to check with either your doctor or the pharmacist. The nighttime formula has a gooey consistency and that, in addition to taping the eyes down, can relieve nighttime dryness. IT might be that if you use the goo, you would not have to tape the eyes down, too. You would need to experiment. But you would need to run my suggestions by your doctor.

I believe someone who posted here a while back said that the burning with the Restasis went away over time — I’m not sure how generally true that might be, and you might want to ask that question of your doctor. If that is true, it might help you to endure the initial process a bit better.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1076669

I’m new to the Bulletin Board and wanted to pass on a tip that worked for me to help with swollen eyes in the morning. (I have both TED and Graves.) Use an ice pack on your eyes when you go to bed! I usually use it for 1/2 hour or more (sometimes fall asleep with it )while i listen to news or music on the radio. I really does work to reduce swelling when you wake up. My opthalmic surgeon suggested taking an Aleve at this time, and that worked too. Hope this helps! And thanks to all who have posted. I found better information here than anywhere.

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