[Anonymous]

#1076805

I am so sorry to hear that you are having continuing problems with your eyes. I am sure that Jake will answer you if he comes online, but just in case it’s a few days….

The TED is caused by antibodies, and none of the treatments we have available to us do anything to those antibodies –nothing of a permanent nature, anyway. Typically the TED antibodies stop creating havoc, and may even go into remission for many of us, after 18 months to 3 years. While the antibodies are irritating the cells in the muscles of the eyes, they cause these muscles to stiffen, and enlarge, and because there is bone all around the eye socket the only place for the eyes to go is forward, i.e. outward, and this causes more protrusion. Unfortunately, the autoimmune nature of the disease makes it much more difficult to control.

You are obviously doing what you can, and are being monitored, which is important. I do hope that the disease starts to remit soon for you.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1020341

I haven’t posted here for quite a while, but like many others “peek” in occasionally. I was diagnosed with Graves and TED almost 3 years ago.

I had RAI about 2 and a half years ago, but am still dealing with finding the correct dose of replacement hormone.

My TED has never quite stabalized – I have done the prednisone therapy, the orbital radiation (10 treatments), restasis drops, etc. My last check up yesterday showed an increase in the proptosis in each eye once again. Left now being measured at 20 (up 2) right being 22 (up 1) since May. Whatever could be causing this to continue to worsen?? Of course I am still dealing with double vision – I wear prisms in my eyeglasses, but cannot drive longer than 20 minutes or so. Sometimes I get so discouraged!!

I recognize some names I used to see back in ’03 and ’04 – good luck to Joy in your new home and to all who are dealing with the ups and downs of GD and TED here on this bb.

Gail

[Anonymous]

#1076806

Thanks for your kind words Bobbi. I guess I am lucky that I haven’t had to have any surgeries yet – but I am afraid I am heading in that direction despite all my other treatments. I just thought that the orbital radiation would prevent the muscles from expanding again.

Gail

[Anonymous]

#1076807

Gail,

It is rough. I understand. I went through three separate hot phases when most only go through one.

As Bobbi said there is no know treatment for the eye muscle or fat issue. However, when our thyroid levels are under control and the antibodies are not raised our eyes have a tendency to become stable.

That is not a guarantee it will happen, just saying it happens for the majority of people. Keep having your eyes checked to see how the TED is progressing or stabilizing. Keeping your eye doctor in the loop and closely watching what is happening is always a good bet.

We are only a click away.

Jake George
On-line Facilitator
Co-Author “Graves Disease In Our Own Words”
Author ”Grandfather’s Song”
Author ”A New Dawn”

[Author]

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