[Anonymous December 21, 1996 at 6:39 pm Post count: 93172]

#1057594

I was thinking that I was pretty lucky that my eye involvement has been
limited to double vision and grittiness. No ptosis. My husband was
looking at my eyes and mentioned that one (the left) sticks out.
I was feeling fairly lucky before that.

Eye involvement started at the end of September with double vision, then the grittiness came.
Does anyone have any idea about the time frame on the progression of
eye involvement? Fast? Slow? Different for everyone?
Three months seems awfully quick to be noticing ptosis.

I thought I could lick anything: I beat diabetes with insulin, then just diet and exercise;
good asthma meds allowed me to throw away a diabled plackard; I thought RAI
and synthroid were the answers to Graves. I guess I’m feeling down about this.
Information on progression would be great.

[Anonymous December 22, 1996 at 6:40 pm Post count: 93172]

#1166403

I wonder the same thing–how long do the eyes keep changing. Altho I know it’s got to be different for everyone, I want to know the “usuals”. My eye problems started with a little double vision and some protrusion. After a couple months, my eyes looked the same as they do now–about 5 months later. It seems it took them about 2 maybe 3 months to protrude this much (right eye hardly at all, left eye a little). I keep hoping maybe they’re done, but I supose they can do anything for a couple of years. I feel alittle hopeful that they haven’t protruded more for quite a while (altho my eyelids are retracting alittle more). Does anyone have a “usual” scenario for us?Thanks, KarenG

[Anonymous December 22, 1996 at 6:44 pm Post count: 93172]

#1166404

I wonder the same thing–how long do the eyes keep changing. Altho I know it’s got to be different for everyone, I want to know the “usuals”. My eye problems started with a little double vision and some protrusion. After a couple months, my eyes looked the same as they do now–about 5 months later. It seems it took them about 2 maybe 3 months to protrude this much (right eye hardly at all, left eye a little). I keep hoping maybe they’re done, but I supose they can do anything for a couple of years. I feel alittle hopeful that they haven’t protruded more for quite a while (altho my eyelids are retracting alittle more). Does anyone have a “usual” scenario for us?Thanks, KarenG

[Anonymous December 22, 1996 at 10:27 pm Post count: 93172]

#1166405

Hi JR

Everyone is different on the progression of any symptoms of Ophthalmopathy, Hopefully yours is being watched by your eye doc as he needs to keep tabs on the proptosis and signs of secondary Glaucoma. Color vision deterioration is also an indicator of pressure on the nerve so he should watch for that, it can sneak up on you.

You mention 3 months as soon to notice eye problems, 3 months from what? Over a period of three months I went from ok to severe proptosis and nerve involvement/vision loss (no major thyroid problems)

It does not sound like yours is coming on very fast actually, may be a good sign. (we hope, huh?)

Bruce

[Anonymous December 23, 1996 at 12:29 am Post count: 93172]

#1166406

Hi JR! You’re right – the progression of the eye involvement in Graves’ Ophthalmopathy varies from person to person. According to what I’ve read, eye symptoms and hyperthyroidism symptoms usually appear within 18 months of each other. The natural course of eye changes in the soft tissue, eyelids, and orbits occur within a six month to one year period. My doctors told me that most GD symptoms happen within the first two years.

It seems that the eyes go through a “hot phase” and a “cold phase.” During the “hot phase” there is an immune attack on the eye muscle tissue, which causes the inflammation. In some people this inflammation is slight and it goes away on its own. In more rare cases, others see the inflammation get progressively worse and have to decide on treatment. Steroids are usually used first, then radiotherapy or decompression is recommended for severe cases after the inflammatory phase has subsided. Six months of stabilized eye changes along with stabilized thyroid levels are indicators that you are in the inactive or “cold” phase. At this point residual changes of increased tissue and scarring can remain, and you may be faced with other treatment options – eyeglass prisms or strabismus surgery, or eyelid retraction.

Most of this info I summarized (accurately, I hope) from a very informative bulletin from the NGDF, #6 “Eye Changes With Graves’ Disease – Continuing Concepts.” I recommend joining the foundation and ordering this bulletin and others! Go to the NGDF home page found at the top of the BB site and print out the application.

I hope this was helpful. Good luck and Happy Holidays! Debby

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