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  • Anonymous
      Post count: 93172

      Hi Mariposa,

      I’m so sorry you’re dealing with this ~ there are lots of people here who have gone through it, though, so you’re looking for information in the right place.

      In many people, the eye issues resolve on their own. It is not likely that your eyes would return completely to their original state, but it can happen that they come close and require no surgery. Some scar tissue typically remains after the TED has gone into what they call the “cold phase,” so while changes may still exist, they could be much more mild than you expect.

      I have not heard any reliable evidence that alternative therapies can “treat” TED, but there is this to consider: TED is an autoimmune disease, and our immune systems kick into “high gear” when we are stressed. Anything you can do to reduce your stress levels ~ and I do not mean by stuffing it all inside and pretending it doesn’t exist ~ may help to relieve some of the more severe symptoms. Something like accupuncture may be perfectly suited for stress relief. Of course, yoga helps with that also, and no one sticks needles in you. :-)

      Any experimentation with supplements should be done with the full knowledge of your regular doctor, because there are interactions between drugs and supplements that the doctor can help us understand. In some cases, supplements we don’t fully understand can counteract the “western medicine” we have been given, so it’s best to have the doctor know what you’re considering or taking already.

      I’m sure there must be someone here from the Atlanta area ~ just wait, they’ll pop in. :-)

      And finally, if you do need surgery once the TED “attack” is over, please know that in most cases the surgery provides a great deal of relief. I don’t know anyone here who has been sorry they did it. It’s an ordeal, to be sure, but you know that living with those eyes is no picnic either. If it comes down to it, you’ll be so glad to know that surgery is an option for you.

      Hoping you get some relief soon,
      NGDF Assistant Online Facilitator

        Post count: 93172


        I’m glad to find this board. I’m a young mother in Atlanta recently diagnosed with TED. I am not hyperthyroid (yet, as my endo says) and am very frightened. I have always had large eyes, but they are significantly protruding now and I can’t wear my contact lenses because of the great discomfort and my concern about my appearance.

        I have an experienced neuro-ophthalmologist who says I’ll be fine and I can have surgery at the end of this if I don’t like how I look. I have likely been experiencing symptoms since December. My endo also wants me to see a rheumatologist to check on vascular issues causing the eye symptoms as he says my bloodwork does not indicate “active TED” (my TSI level is 85, normal less than 2.)

        Do most people have to have surgery? Is there any chance things could resolve on their own? Has anyone pursued alternative therapies during this disease (accupuncture, herbal treatments, etc.) with any success? Is there anybody on this board in the Atlanta area who has TED?

        Thanks for any info.

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