Thyroid eye disease: Can it recur?
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From: EM on 16 Jul 2008 19:13 I was hyperthyroid 13 years ago. At that time, I had extreme light sensitivity, and wore sunglasses indoors, and welding goggles outside. About 4 months after RAI, the light sensitivity went away. In March of this year, I got light sensitivity again. Not as bad this time, but it is still lingering. I didn't think it was thyroid this time - I thought it was adrenal. One of the adrenal symptoms is pupils dilate, and don't constrict well with light. And my adrenals took a major hit in March, with a bunch of other symptoms. But it didn't quite make sense being adrenal.. In the back of my mind, I thought it didn't quite fit the usual adrenal pattern. Today I went to an ophthalmologist. I only got to spend 15 min with him, so maybe not enough. I said that I had the thyroid eye stuff 13 years ago, but no bulging - only light sensitivity. He looked at my eyes and said that my right eye was more prominent than my left. So really, I did/do have bulging. And he gave me a diagnosis of Thyroid Eye Disease. In the back of my mind I had wondered about this. One dr once told me that the anti-thyroid antibodies may hang around in the system long after the thyroid is destroyed with RAI. Is it possible that I am having a recurrence of the Thyroid Eye Disease 13 years later? Thanks, EM
From: Rod on 17 Jul 2008 02:54 EM wrote: > I was hyperthyroid 13 years ago. At that time, I had extreme light > sensitivity, and wore sunglasses indoors, and welding goggles > outside. About 4 months after RAI, the light sensitivity went away. > > In March of this year, I got light sensitivity again. Not as bad this > time, but it is still lingering. I didn't think it was thyroid this > time - I thought it was adrenal. One of the adrenal symptoms is > pupils dilate, and don't constrict well with light. And my adrenals > took a major hit in March, with a bunch of other symptoms. > > But it didn't quite make sense being adrenal.. In the back of my > mind, I thought it didn't quite fit the usual adrenal pattern. > > Today I went to an ophthalmologist. I only got to spend 15 min with > him, so maybe not enough. I said that I had the thyroid eye stuff 13 > years ago, but no bulging - only light sensitivity. He looked at my > eyes and said that my right eye was more prominent than my left. So > really, I did/do have bulging. > > And he gave me a diagnosis of Thyroid Eye Disease. > > In the back of my mind I had wondered about this. One dr once told me > that the anti-thyroid antibodies may hang around in the system long > after the thyroid is destroyed with RAI. > > Is it possible that I am having a recurrence of the Thyroid Eye > Disease 13 years later? Hi EM, The Thyroid Manager site has quite a lot of information. But, in a quick look, I did not notice any mention of recurrence. I find myself thinking, like you appear to, the antibodies hang around, so why not? <http://www.thyroidmanager.org/Chapter12/12-frame.htm> (Click on this link, then choose GRAVES' ORBITOPATHY in the column at the left. (I know little or nothing of TED - just what can be found out. So check anything I say.) I am *also* be wondering if you could be hypothyroid? That can produce photophobia. You didn't mention taking thyroxine, having thyroid tests, etc. I know that some people who have had RAI get put on a dose which, after initial tinkering, is not adjusted, even if TSH changes markedly. Obviously, the ophthalmologist's opinion might be seen to weigh against this possiblity - but please don't ignore it. (A note for the record, you can have TED with hypothyroidism - it is not exclusive to hyperT.) By the way, do you have a name? And roughly where in the world are you? All the best - do come back. -- Rod Hypothyroidism is a seriously debilitating condition with an insidious onset. Although common it frequently goes undiagnosed. <www.thyromind.info> <www.thyroiduk.org> <www.altsupportthyroid.org>
From: Adreeanna on 20 Jul 2008 17:00 Hi EM, Yes the thyroid eye disease can and does sometimes come back. About a year before I showed the signs of Graves Disease, I developed Thyroid Eye Disease which is now being classed as it's own auto-immune disease and can occur with or without thyroid involvement of any kind. TED has active and inactive phases. You can be active for anywhere from 6 months to an average of about 3 years. It can enter in to an inactive phase and remain there for years until something triggers it once again. Keep in good contact with an exellent opthalmologist familiar with TED, and learn how to care for your eyes. Cindy "EM" <express_myself_01(a)yahoo.com> wrote in message news:f99cc973-4562-4bba-8744-f0f1a31cb0d8(a)f63g2000hsf.googlegroups.com... >I was hyperthyroid 13 years ago. At that time, I had extreme light > sensitivity, and wore sunglasses indoors, and welding goggles > outside. About 4 months after RAI, the light sensitivity went away. > > In March of this year, I got light sensitivity again. Not as bad this > time, but it is still lingering. I didn't think it was thyroid this > time - I thought it was adrenal. One of the adrenal symptoms is > pupils dilate, and don't constrict well with light. And my adrenals > took a major hit in March, with a bunch of other symptoms. > > But it didn't quite make sense being adrenal.. In the back of my > mind, I thought it didn't quite fit the usual adrenal pattern. > > Today I went to an ophthalmologist. I only got to spend 15 min with > him, so maybe not enough. I said that I had the thyroid eye stuff 13 > years ago, but no bulging - only light sensitivity. He looked at my > eyes and said that my right eye was more prominent than my left. So > really, I did/do have bulging. > > And he gave me a diagnosis of Thyroid Eye Disease. > > In the back of my mind I had wondered about this. One dr once told me > that the anti-thyroid antibodies may hang around in the system long > after the thyroid is destroyed with RAI. > > Is it possible that I am having a recurrence of the Thyroid Eye > Disease 13 years later? > > Thanks, > EM
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