[lilsispatrick]

#1060462

Just want to see if anyone else has expierienced the same. I had radiation treatments (10 to be exact) on my eyes for the Opalmopathy in 2009. The treatments helped with the swelling but I continue to have mild swelling, pain with eye movement, floaters, light sensitivity, little flashes of lights and double vision. I had a total thyroidectomy in 2011 and to date my labs (last 6 months) have come back as hyper. I’ve gone from levothyroxine 125mcg down to 88mcg and still feel the same. I had an appointment with a new opthalmolgist yesterday (moved out of state, new dr’s) and she did a complete eye exam. I was handed a bottle of eye drops, told to get new glasses and my thyroid adjustments should take care of what’s going on! I’ve been dealing with all of this for 8 years, I think I know by now when things aren’t right?! Question is…why the hyper state w/o the thyroid? Why are the eye problems continuing? Is this permanant damage? I also asked the ophthalmologist if she sees many patients with TED and she said “yes” then mumbled something under her breath.
Any information would be helpful.
Thank you

[Kimberly]

#1182774

Hello – Keep in mind that we are fellow patients here, not docs, but here is some “food for thought”…

The hyperthyroidism post-TT should stabilize as you work with your doctor on dose adjustments. If that doesn’t do the trick, definitely ask your doc to look in to other causes. For example, there is a VERY rare condition (struma ovarii) where thyroid tissue is found in the ovaries. For a partial thyroidectomy, tissue can re-grow, but the risk of this for a total thyroidectomy is near zero.

The thyroid and eye issues are related (being hyper or hypo is a risk factor for aggravation of the eye disease), but they do run separate courses. Shirley was diagnosed with TED literally decades after thyroid surgery. Still others end up with TED and yet have completely normal thyroid levels. This is still not well understood.

The usual course of TED is that there is an active phase, followed by *some* improvement, and then the condition enters a stable phase. This is where surgical procedures, if needed, can be done.

If you don’t think your current ophthalmologist is the right one for you, this is an association for eye surgeons; there is a search function where you can search by city/state/zip for a doctor near you:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.asoprs.org/custom/directory/?pageid=3657&showTitle=1

Hope this helps!

[lilsispatrick]

#1182775

Thank you Kimberly. I had a complete hysterectomy in 1995 and last month an ultrasound to check for any tissues of thyroid, there wasn’t anything! I thought after the radiation treatments that the eye problems even over the past 4 years would go away. Speaking with the new opthomologist yesterday she repeatedly asked about the floaters and headaches as if I were lying! Why would someone want to lie about this disease?! She said everything looked great, no damage to optic nerves, retina and no glaucoma…thank goodness!
Just looking for answers.

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