Here's the current state of my "thyroid stare." The lid retraction doesn't show, although I have taken to taping the eye shut at night.I just visited the ophthalmologist today, and he said things are fair to middling: corneas not too dry, proptosis steady at 22 mm. for each eye, intraocular pressure "okay,"double vision no worse than before, and most importantly, vision and optic nerves good. I asked him about seeing slightly less red in one eye. He said that it should not be concerning unless it is a definite bleaching out of the color red in the central--not peripheral--vision field. I don't think the difference is striking enough to pursue, since I am not sure if it is new or something I always had.
I go back in June for a check, with visual field testing, as I had last time. The doctor hopes that by October my disease will have burnt itself out and the swelling will have subsided. He holds out little hope for resolution of the proptosis (eye bulge) but nobody thinks my eyes look any bulgier than they always were, so no big deal. I hate the swelling the most, since it makes me look old and tired.
I keep forgetting to tell him and my endocrinologist about my theory of having had euthyroid GO in 1993-94. Doubt it matters.
I am cutting back on PTU and hoping for the best, since even 10 mg of Tapazole had me on the verge of hypothyroidism--my free T3 and free T4 had been on the threshold of going under normal limits. Who knows where they are now, after the med holiday and switch. Labs drwan tomorrow, and maybe I can pry the values out of the endo's nurse this week.
5 comments:
Hi- Thank you for your info. I don't understand the part in this comment regarding the red color. Can you explain more when you have time? I'm having swelling and puffiness as well- your doctor thinks it will go away then? I see my eye specialist in April and I plan to ask him about it. I feel like I've been puffy since the end of Dec. Hopefully this will run it's course by the end of the summer..I hope that is not to unrealistic but I am being postive. I guess one good thing is that this can't last forever..it has to subside at some point and I hope I won't get much worse.
Again thanks for your info.
Hi Kelly,
Red color: I am talking about red perception. When your optic nerve get squeezed by the Graves' swelling, the first thing to go is how strongly you see red. First it starts looking like pink, then fades out. Relieving the pressure often restores the color vision. Hope that helps--I was not clear.
Most GO cases "burn themselves out" by a year. Some are burnt out in six months and some take two or even three years. Rarely will it take more time than that.
The bad part for m is not knowing what will go and what will stay. The safest thing to assume, says my eye doctor, is that my eyes will never be quite the same again, but that they will get better.
Good luck to you!
Hi Etaoin-
Thank you for replying! You might be able to tell that I am following both your web site and Linda's. You both have been most helpful to me.
That is the hard part for me too. Not knowing how much worse my eyes may get. The puffiness makes me look older than my 39 years and downright haggard at times. I was much comforted once I learned that this part of the disease will burn itself out. So it will end. I've been dealing with eye symptoms since early October so I have five months under my belt, I hope that means less than a year to go. But I know, as you pointed out that, it may last a bit longer. I'll get through it one way or the other. It could be worse. At least we don't have something terminal. Thank God for that.
Do you know any stats on eye recurrence? My mom had this in 1974. She died this past November and for the last 30 plus years she had no other eye problems. She experienced the bulging but they went back to normal on their own and she was a smoker! I am not a smoker and take good care of myself so I know that is in my favor.
Thanks again and have a good day,
Kelly
Kelly,
I'm sorry about your mother's death. Do you think her passing is what triggered your bout with this disease?
Recurrence: not very common. I wish I had stats on it, but I don't, except to say that the eyes usually flare up once. After that, they are a lot better, but not the same as before, usually. Proptosis usually doesn't reverse itself very much.
Earlier in this blog I mention how I may have had GO once before, without the thyroid component. It followed a stressful time in my life, and lasted for about 3 months. Was not as severe as now--I had bilateral swelling and grittiness. My point: maybe I got it twice.
Hi- Good to hear from you. I'll ask my doc about the eye exercises on my next visit coming up on April 24th.
Thank you for the comment about my mom. I've thought about that as a possible trigger and I think that may have contributed to it as well as the fact that she had the very same thing at about my age, in fact she was about 4 years younger that me when she experienced it.
I am also encouraged by your comment that most cases last at most 3 years and rarely more. I was reading as long as 5 so I hope what you are saying is more common. I guess we just have to deal with the here and now and not worry about recurrence at this point. I just want to get through this bout.
Thanks again for your info!
Kelly
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