[Kimberly]

#1066524

Hello – I’m sorry you are dealing with all of this…how frustrating! Thyroid Eye Disease typically goes through a "hot phase" where symptoms worsen (swelling, dryness, double vision, etc.), followed by a period of slight improvement, followed by a "cold phase" where symptoms are stable. This entire cycle can take months — or even a couple of years.

For now, it is a good idea to establish a relationship with an ophthalmologist who is familiar with Graves. While we can’t reccomend specific docs here, if you google "ASOPRS" this is an association of professionals who specialize in plastic and reconstructive surgery of the eye.

Surgery is *not* recommended until the patient enters the "cold" phase where symptoms have stabilized. (The one exception is that if the optic nerve is being compressed to the point that one’s vision is threatened, surgery will be done immediately to prevent future loss of vision). The reason for waiting is that you wouldn’t want to go through surgery now — and then have to do it all over again if your vision changes a few months later. But if you establish a relationship with an ophthatlmologist now, and check in every three months or so, he/she can tell you when you have entered the "cold" phase and would be a good candidate for the eye muscle surgery.

In the meantime, an eye patch might be an alternative if the prisms just aren’t working for you. Hope this helps!

[markwagner]

#1066525

Thank you for the response. Is there anything else I should do or take to improve the healing process for my eye muscles. Also it seems as though my eyes work a little better at night and I have been trying to use them both together but it seems that I make the eyes worse the next day. Should I not try to use them together for now????

[markwagner]

#1018696

Any help would be much appreciated. I had Radio Treatment 4 months ago and I recently went hypo and currently am getting regulated on synthroid 125mcg. I presently feel very lethargic and my eyes are not improved. I have double vision that is constantly changing in terms of how much and is worse in bright sunlight. I get the occasional persistant pain behind the eye but I do not have much of the other symptoms such as bulging eyes, etc.

I am frustrated, as because my eyes are constantly changing, and therefore prism glasses do not work. I have a hard time working in sales as I have to use glasses where one eye is occluded.

How long will this continue before my eyes improve or should I consider eye muscle surgery?

[snelsen]

#1066526

I am not sure where you live. I had double vision that really got my attention of April of last year. Bulging eyes, dry eyes, eyes that tear all the time I am seeing a neuroophthamologist, plus an orbital surgeon, plus a stabismus eye surgeon (eye muscle.) This is a hellish disease, for I want ACTION, and I am in that phase where it is difficult to determine when/if I have progressed through the "hot" or inflammatory stage, where the antibodies are still attacking they eye muscles, and when they have done all the damage they are going to do, then you/we/I are in the "fibrotic" or cold phasel When our eyes are changing all the time, by our own observations and by their measurements, surgery should not be done, for they need accurate measurements and information before they proceed. (I had a subtotal thyroidectomy for hyperthyroidism several decades ago, and just developed thyroid eye disease in the past year or so. The prisms did not work for me, either. My inferior, and to a lesser exent, my lateral and medial muscles are affected. So I can look down with no double vision, but have it when looking ahead. So I have been impatiently waiting for this dumb disease to run it’s course. Plus decreasing thryoid, which makes me cold, and tired, as I try to move away from taking too much thyroid.

I just had an orbital decompression, for the only medical indication to have one, at my stage, and that is optic neuropathy, which means that the optic nerve has too much pressure on it and is being damaged, and something must be done. Both eyes are bulging out a lot, but especially the one I had surgery one. I mention this, cause the neuro-ophthamologist is the guy who is "the keeper of the optic nerve." When I got blurred vision, had more troubles recognizing colors (red not as sharp) and when I had visual fields with the machine with the little white light, it showed that I was losing peripheral vision especially looking laterally.
So, this is a start, and I used myself as an example, for I was scared to death to HAVE to have an OD, but I had to because of the threat to my optic nerve. I am now 6 days post-op, and the whole thing has been a breeze compared to what I thought it would be.
I am glad you found this site, there are really good people here. You have gotten some good responses. The facilitators are great. If there is anything I can do to help you, just ask. Hope this helps a little bit. I sure understand about the double vision. This whole thing is life changing, but it WILL have an end. Shirley in Seattld

[Bobbi]

#1066527

Hi, markwagner.

I identified with your post. I could have written it myself a dozen years ago. When my eye disease was causing my vision to fluctuate madly, and I was seeing two opthamologists who were "waiting and seeing" there were days I wanted to tear at my hair. If not cry.

I did use eye patches occasionally. (I absolutely could not drive safely without depth perception. Some folks can, but I could not.)

I can tell you that in my case, the "hot phase" lasted the average amount of time. I am told that it can sometimes linger for 3 years, but apparently the average is about 18-24 months. Once the disease started to abate, my vision improved, as did the "look" of my eyes. For the last 10 years or so, I only get double vision when I am tired, or hypothyroid (i.e. when I’ve needed a dose change of my replacement hormone.)

As far as I know, doctors will not do any type of surgical repair until the hot phase has finished, unless the optic nerve is threatened. The reason for this is that the conditions change back once the hot phase is over. Our symptoms remit. Whether or not they remit completely depends upon how much permanent damage to the muscles during the hot phase. I was told that I undoubtedly had "some" permanent damage at one point: i.e. that I could not expect any complete, pre-Graves remission. But, as I said, the double vision no longers plagues me. So, if I had insisted on surgery to correct my doubling of vision (which, like yours was not helped by prisms), I would have needed yet another operation, after things improved, to fix what the first surgery had done.

I know it is hard, right now. But things may improve greatly once the disease goes into remission. So hang on to that hope.
I wish you well.

[markwagner]

#1066528

Thank you for all your responses. You all have been very helpful in dealing with this frustrating disease. Can you tell me what is the most accurate way to determine if and when I am out of the "hot phase" and in the "cold phase" of this process???As I mentioned I had Radio 4 months ago, I finally went hypo a month ago and I am currently trying to get regulated with the proper dose of synthroid (125 mcg) which judging by the way I feel is – is still not correct. Knowing when I am out of the "hot phase" will at least provide some progress!!!!!!!

Thanks,

Mark

[JackieC]

#1066529

My opthomologist made me wait about 2 years before he would do orbital decompression. It was a long two years. I checked in with him every 4 to 6 months and he did varying measurements on my eyes. Sometimes I thought that they had not moved and the hot phase was over but his measurements were so microscopic and thorough that I was wrong. I am glad that I waited it out thought because it is so microscopic of a surgery that if I had not waited long enough my eyes would not be as even as they are now. You can barely tell that I had any problems before. If I had not waited out the entire phase I doubt my surgery would have turned out as good as it did. I know that it is frustrating, but it worth the wait.

-I am one month into recovering from the procedure with almost no swelling left and my visions is so much better – it will get better eventually!

[Kimberly]

#1066530

markwagner wrote: Can you tell me what is the most accurate way to determine if and when I am out of the "hot phase" and in the "cold phase" of this process???

Hi Mark – This is something that will need to be determined by an ophthalmologist. There are several criteria that are indicative of Thyroid Eye Disease, including eye pain, vision changes, swelling, and proptosis (bulging of the eyes). The doctor will monitor these (and other) criteria at periodic intervals, such as every three months. When you get to a point where your symptoms are no longer getting worse, this is an indication that you are entering the "cold" phase. The evaluation is based on a combination of specific measurements (such as proptosis) as well as your own reporting of symptoms (such as eye pain and degree of double-vision). That’s why it’s important to get a qualified ophthalmologist on your team early in the process.

Also, you asked about preventative measures that you can take. I’m not aware of any that apply specifically to muscle issues and double vision. Most of the suggestions I’ve read have to do with minimizing dryness and reducing swelling: using eye drops frequently, wearing wraparound sunglasses to avoid excessive exposure to sun and wind, elevating the head of your bed, and wearing an eye mask at night. Also, if you smoke, quit! Smokers (and even those who are exposed to second-hand smoke) are at a much higher risk for severe complications with Thyroid Eye Disease.

Hope this helps!

[Ski]

#1066531

You’ve got some great advice ~ I just wanted to point out that your eye disease is a separate issue from your thyroid, so the thyroid treatment you had would not affect the course of your eye disease.

The cold phase is typically diagnosed in retrospect ~ the ophthalmologist will look for a long period of time (months) in which NO changes have occurred, then you can safely contemplate surgical repair options. Keep in mind that there is a period of improvement included in the cycle of Thyroid Eye Disease, so in the end you may not have to have any eye surgery at all. MOST of us do not get the worst of the eye disease, and many of us have our eyes return very close to normal (I did).

Oh, one more thing ~ the fact that your eyes are not tracking together has to do with the fact that some muscles are more swollen than others. Forcing the two to "act together" won’t really help, in the long run. Using a patch to relieve some of the double vision can give you some relief ~ just make sure to switch eyes occasionally so that one doesn’t become weak from not using it.

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