[Marlan]

#1017885

Hi everyone, Living in a sm. town has ended up being quite a hassle with my eye problems. I have never had any health problems and am 62 yrs. My eye lid started to swell and retract in Apr. after a bug bite on my eye lid. My ct showed fat deposits in my eye orbits, and my thyroid blood work was normal. The doctor here didn’t know what to do with me. She felt I didn’t need an endocrinologist as my labs were ok. My regular eye MD refered me to an eye orbit specialist who put me on prednisone 60mg. going down by 10mg. every 5 days. After 12 days of steroids my eye started to get better and the swelling improved a little, but by the time I got down to 20mg. the swelling worsened and when I was thru with the prednisone my swelling and retraction really worsened. the eye doc told me I had euthyroid graves and I started to research this and I discovered that I most likely didn’t even have the correct lab work done. So now I’m kind of in a holding mode until my appt. with an Endo. in July [but he did order a thyroid pannel]. I don’t have any vision problems. I believe I could be stabliizing. As about 80% of the eye discomfort is gone. My eye looks bad. In case your interrested my TSH is .770 [.40-4.6]. FT3 2.80[2.4-4.2], FT4.75[.61-1.27, my TSI is 97 [0-129].

The thing is my doc here didn’t know there was the possibility of having euthyroid with graves and I may have not had the right treatment and for sure I got the wrong advice fron the docs here. Incidently three docs here looked at my eye and they all thought I had a brain tumor.

I’d love to hear from anyone . Also looking for advise. Marlan

[Kimberly]

#1061450

Hello – Unfortunately, I can’t help you with the small town issues, but I wanted to mention that at our last conference, one presenter mentioned that about 15% of patients with Graves’ get eye symptoms before they have any thyroid involvement. The docs will likely take a “wait and see” approach on your thyroid levels and not take any action until your levels end up outside the “normal” range.

Also, steroids such as prednisone are really only a “temporary” fix for the swelling issues…the swelling is likely to return when you remove the prednisone. The trick is to weigh the possible side effects from prednisone with the benefit to your eye symptoms.

This board is a great resource – there are many members who have been through all the different phases of TED who are happy to share their experiences and answer questions.

[SallyB62]

#1061451

I had the eyelid retraction well before my thyroid went Grave’s Disease hyper. Luckily, I didn’t get the fatty deposits behind the eyes. Unfortunately, my GP doctor didn’t recognize my eye symptoms as serious; eventhough, at one point, I looked like I had been born without eyelids.

Have you been tested for the thyroid antibodies?

[Bobbi]

#1061452

Don’t just blame it on a small town: my mother had trouble getting the proper diagnosis and treatment living in a big city. Sometimes the docs just miss things.

Also, be careful of recommendations you might read here on the WEB. While there is good information available, a huge amount is either bogus or dated (i.e. old enough to be meaningless due to new research information). So, if you read somewhere other than a well-vetted medically sound site that you should have X tests done, check it with your doctors.

And, to make a recommendation: ” title=”Very Happy” /> To emphasize a point that Kimberly made, some people develop the eye disease before going hyperthyroid. Actually some people get the eye disease before other thyroid problems develop too, not just Graves. When I was diagnosed with Graves, the eye disease was called "Graves opthamopathy." During my treatment, doctors began to call it "THYROID-related opthamopathy." I asked my eye doctor why, and was told it was because more and more cases were showing up where the person had other thyroid issues, not just hyperthyroidism. So my point here is to make sure that when you get your annual physicals done (and do get an annual physical, if only just blood work from here on out) make sure that the doctor checks your thyroid function. It’s a simple part of a blood panel, but it could save you a lot of grief to get early warning on thyroid malfunction, if it ever should occur.

Good luck,

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