Hi Everyone,
I’ve been gone a while but I’m back with some information on TED as well as looking for further enlightenment.
I’ve been doing research that I wish I had been able to do when I was first misdiagnosed and then diagnosed with Graves’ Disease. I know I have some decisions to make regarding my eyes now that my thyroid has been removed and my Synthroid is finally at the correct dosage (after a year of tinkering). My eyes however continue to grow worse.
I have learned that my endo made a mistake by not putting me on Prednisone and/or antithyroid medication while I underwent RAI even though Graves’ ophthalmology was present. As a result, it worsened my eyes. It would have been such a simple thing to prevent too.
I thought that by removing my thyroid would stop the progression of the TED. Sadly, my eyes have continued to grow worse even at over a year later. I’ve learned through research that removing the thyroid can cause the Graves to attack my eyes even worse. This is what is happening to me. I also learned that after about two years it usually burns itself out.
I haven’t found much that alleviates the pain other than naproxen sodium. It helps a little bit. I also have to sleep with a blindfold on. I cut up old pantyhose and use it for a blindfold (more comfortable than taping or a bandanna). I go through tons of luby stuff and eye drops.
I’m trying to get a referral to Bascome Palmer Eye Institute in Miami. Has anyone gone there??? I used to go there when I was first misdiagnosed with inflammatory pseudotumor. I would like to go again and see if there are any new and cutting edge “cures” for TED.
Can anyone provide more information on TED??? I know my choices at this point are surgery, prednisone (yuck and didn’t work) and radiation. Are there any other newer choices???
Once I get into Bascome Palmer, I will let everyone know if there are any new research projects, etc. on TED. The Eye Institute is world-renown and rated very high nationally.
Sorry this turned out to be so long but I wanted to share what I have learned as well as try to elicit more info. Thanks everyone.
Diane
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