[Anonymous]

#1020213

I’m sure others will add their ideas to mine, Nina. It sounds to me like you need to develop some coping techniques for the eye disease. The morning puffiness, for example, can be somewhat alleviated by elevating the head of your bed. This could be done by putting a board, or bricks, etc., under the head of the bed to raise it up, slightly.

For your evening work, at home, on the computer, you could wear an eye patch. Covering one eye eliminates double vision. I found using a patch to be extremely helpful. Patching one eye causes a loss of depth perception, which can be dangerous if you do it to drive. (Of course, driving with double vision is dangerous all by itself.) I couldn’t judge distances well at all with a patch, so I became more home-bound for a while with my eye problems. Others on the board did drive with the eye patched, and are alive to tell about it.

It is possible that your eyes are not closing completely as you sleep, and this causes them to become excessively dry. PUtting in gel designed to lubricate during sleep can help. (It is a night-time formula of the daytime drops.) Some people here have had to tape their eyes shut in addition to using the gel.

You could fill two, sandwich-sized ziplock style bags with frozen peas, and use these on your eyes in the am (or anytime really) to reduce swelling. Keeping them separate, in their own small bags helps to prevent you from using a food product that has been thawed and frozen multiple times. The peas adapt themselves to the contours of our eyes. It makes a very nice cold compress.

You mentioned that your thyroid has been “normal” up to this point, although you think the TSH might be going lower, and you are considering RAI. This suggests to me that you think getting your thyroid “fixed” will “fix” your eyes. No. Unfortunately, TED and whatever thyroid disease a person might have are separate diseases. Graves and TED are both autoimmune, so we tend to see them in conjunction. But medical researchers have changed the name of the eye disease in the past ten years. It used to be called “Graves” opthamopathy. Now they know that people who have never had Graves, but may have had other thyroid issues (like Hashimotos) develop the eye disease as well, so now the name that is coming into use more prevalently is “Thyroid Associated Opthamopathy”. TED.

There are one or two eye issues — minor ones — that are associated with elevated levels of thyroid hormone. But double vision is not one of them.

One of the things I noticed with my own double vision was that it was worse when I was fatigued. The muscles of the eyes get swollen, mishapen with TED. And it becomes difficult for them to focus on a single point, which is necessary for seeing only one of something. With fatigue, the muscles do not work optimally, so the vision becomes distorted. While getting better rest can help, it will not eliminate the problem. But you might find that you are less plagued by doubling when you are well rested, and relaxed.

As for the colonoscopy — you need to discuss that issue with your doctor. The eye disease can be a problem for years, not just months. Putting all of your other health tests on a back burner, while you deal with the eye issues, may not be wise. Your doctor will be your best guide.

I do hope you are seeing improvement soon. I know how scarey the development of TED is. Please know, that getting “some” eye changes does not mean that you will inevitable develop horrid eye disease. I had double vision and did not need steroids or radiation to treat it. Some folks do. I did not. And today, the double vision is gone for the most part. (Only when I am excessively tired do I see double these days.) What is important is that you are consulting with a well-qualified opthamologist. If you have questions about the treatment options (as I did), you can most likely get a referral to a more specialized opthamologist — like a neuro-opthamologist or an ocular surgeon, either of whom may have seem more cases of TED than their less-specialized counterparts. But the eye doctors know that the disease usually remits on its own eventually, so unless there is specific reason to worry about the optic nerve being compressed they do not necessarily intervene with either steroids or radiation. As a patient, waiting things out was immensely frustrating. I wanted to “do” something. In my case — and in many others– doing nothing worked just as well. Maybe better (no side effect issues).

I do hope you are seeing improvement soon.
Bobbi — NGDF Online FAcilitator

[Anonymous]

#1076358

Dear Bobbie and Standing Firm,
Thank you so very much for your messages. I truly appreciate, Bobbie, the time you took to write such a thoughtful and informative message. You’re right in that I need to learn some coping strategies. I did follow your advice and slept on 2 large pillows last night and applied cool compresses. I didn’t have peas so I couldn;t follow that technique but plan to do so in the future. I also need to be more conscientious re applying the Restasis drops 2 times a day —- the burning from this med is very severe, but I’m told this side effect subsides in time. My husband read your letter and he, too, was impressed by the content and the time you took to write it. You’re right —- postponing screening tests until my eyes “settle down” is not a good idea. My husband has agreed to take me that AM so I won’t have to drive with the blurry vision I usually have in the early AM. This subsides as the day progresses. Also, I plan to try using an eye patch when I have the double vision. I’m sorry if my comment re working in a home health office was misunderstood. I don’t work out of my home, but, rather in the office. However, there’s only one other person present, so I wouldn’t feel that embarrassed wearing the patch.
I am very interested in joining a Graves’ Disease support group in the Milwaukee area, but I don’t think one exists. Is there a resource I could use which would give info on how to start a support group.
Thank you again most sincerely for your help. Nina

[Anonymous]

#1076359

Well, using multiple pillows does elevate the head, and can reduce the swelling, but it could also throw your back out. That’s why we recommend putting boards or bricks under the head of the bed. That way, we are still lying flat (not bent), but there is a slight elevation of head over feet.

I’m glad my comments helped.
Take care,
Bobbi — NGDF Online Facilitator

[Anonymous]

#1076360

Why yes Nina there is a place to go to talk about starting a support group. As a matter of fact we are hosting a Support Group Leader Training in Ashville NC, next month. You can call our toll free number at 1-877-NGDF123. Nancy will tell you what is needed to start a support group and tell you about our training coming up.

We strive to have all our support group leaders trained by our volunteer staff. Jan and I will help to conduct the training this year.

We are only a click away.

Jake George
NGDF facilitator
Co-Author, “Graves’ Disease In Our Own Words”

[Anonymous]

#1076361

Jake,
Do you know if there is one being started for Colorado? I have noticed there isn’t as of yet.

[Anonymous]

#1076362

We had someone take the training when we had a conference in Colorado Springs but the group failed to form. Are you thinking about starting one up? If so call our new toll free number. Nancy will get back to you and tell you what is involved. Our goal is to have more than one in each state.

We have 11 folks coming from 4 states for this next training session in the middle of March. Nancy, Jan and I will conduct the training and it should last two to three days.

We are only a click away.

Jake George
Facilitator

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