[bllucas]

in reply to: Full thyroid removal after five years with TED? #1184444

Thank you so much for your insight. It is just nice to know other people understand what it is like to go through this disease. I actually became a member of this forum not long after I was diagnosed and although I never really posted much, I would read what others were posting and it was a great support hearing what others were doing/going through.

Thank you very much for replying:)

[bllucas]

in reply to: Does anyone else have experience with 10 radiation treatments #1181814

Hello jaqeinquotation,
I went through the 10 radiation treatments to my eyes to help stop the progression of my TED in January of 2012. I wish I could say it solved my eye issues but it has not. I feel it did stop the progression of my TED and I feel my eyes gradually did get better due to the treatment but they are still no where near what they used to be.

I was diagnosed with Graves disease and TED December 2011 after several months of being misdiagnosed and several emergency room visits due to extreme eye swelling. Over the past two years I have bounced from hyper to normal to hypo TSH levels. Currently I am normal with my TSH levels but my TSI level is still in the 500 range and normal is less than 150 so my ophthalmologist says I am still in the active phase of TED (after two years and three months since the onset of this awful disease) and cannot have the eye surgery I pray for every day.

The radiation did seem to help with some of the intense symptoms such as the continous tearing and intense swelling and helped me to be able to continue to work without so much pain and discomfort. It did help stopped the swelling to a point meaning my eyes did not continue to get worse but it did not make it go away. People who know me told me my eyes looked better after the radiation treatments. The doctor told me the radiation treatments would continue to work on my eyes up to six months after the treatments and I do feel my eyes did gradually show improvements. Today, my eyes look much better than they did two years ago but my eye lids are still pretty swollen, my eye bulge has improved only slightly according to eye measurements and now my eyes feel extremely dry all the time. It has been a long road and looks like an even longer one ahead but you just have to continue to educate yourself, take care of yourself, and hang in there.

Hope my personal experience may help, I know it is difficult to make some of the medical decisions that come with having this disease.
Take care,
Brenda

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