[arafel_26]

#1019793

March 2007 I was diagnosed with Graves disease and had the RAI the following May. My eyes started to go double so I went to the eye doc and found out I have Thyroid (Graves) Eye Disease. From my Eye Doc I have to wait until my eyes stabalize and my Endo Doc says I could try the steroids and or Radiation. Neither one appeals to me because of what else they can lead to. Anyway, I have been trying to research all I can about this disease and I have come across a website that states a doctor in India can cure TED. I don’t know how much weight I put into "the cure", but the before and after pictures have given me hope and I think if not the cure then maybe it can make it at least a lot more tolorable to live with. Also I plan on contacting a doctor in my area who wrote a testimonial for him as well on a patient he had. I do wonder if anyone in this community has tried this? My Endo said we can try it since my eyes could be changing for a couple of years before they stabalize… oye! Also does anyone have any advice on how to deal with this, and what were your reactions to steroids and or radiation? Any help would be most welcomed. Thank you!

[Ski]

#1074078

Typically TED has a "life span" of one year to three years (people who smoke have a higher chance of experiencing the longer period). It comes on, the eyes fluctuate for a while (better/worse/better/worse), then they stabilize, stay that way a while, then there’s usually a period of slight improvement, and finally, no changes whatsoever.

For the most part, if the TED symptoms are not painful, restricting your ability to see, or endangering your optic nerve, the ophthalmologists will tell you to wait and let it run its course. That’s because once you wait until the furthest edge of the "curve," you may find that your eyes settle back into looking much the same as they did before you started the whole experience, which will minimize the necessity for surgery to correct things.

In the meantime, if you ARE experiencing pain upon movement of your eyes, or having double vision, then steroids and/or orbital radiation can help keep those symptoms at bay. At our most recent conference, we were told that these two treatments can be combined in order to reduce risks from either. They are ONLY effective during the "hot" phase (the period of fluctuating at the beginning), and a patient who shows remarkable improvement with either treatment is likely to also have improvement with the other, so you can combine the two for more relief and less risk.

If your optic nerve is at risk of being compressed by the extra pressure behind the eye (VERY RARE), they will typically start with steroids and/or orbital radiation, may continue to "pulsed" high dose steroids or intraorbital injections of steroids behind the eye, and might even consider orbital decompression. If the optic nerve is at risk, the highest priority is to save your sight. If it becomes completely compressed, there’s no getting it back.

Surgeries during the hot phase are very risky, because the changes in your eyes are triggered by antibody action, which can be stimulated by invasive procedures such as surgery. Usually, no surgeries will be recommended until the "cold" phase.

I’ve never heard of anyone suggesting they could "cure" TED. It is an autoimmune disease, and that is THE mousetrap that the medical community is trying to invent right now. If it were true that an autoimmune disease had a CURE, we would be hearing it loud and clear from all quarters of the globe. Waiting it out could produce the same before/after pictures, so I would not presume that the claims are 100% accurate.

I have never had a great deal of eye involvement, but now, 10 years past my initial Graves’ diagnosis, my eyes look almost exactly as they did when I started, and I never did ANY type of treatment for TED.

Once the entire process is over, there are surgical solutions to correct the issues that remain ~ at that point, it’s usually dealing with the scar tissue, since active changes stop much earlier. Doing surgery later minimizes the procedures you probably need to undergo, but again, if your optic nerve is compressed, that is an emergency situation and you must do something quickly.

I’ve heard the simple layman’s test for optic nerve compression is to look at a Coke can (the RED one) separately with each eye. If one perceives the color as more "pink" than "red," make an emergency appointment to see your ophthalmologist.

[arafel_26]

#1074079

I’ve never heard of anyone suggesting they could "cure" TED. It is an autoimmune disease, and that is THE mousetrap that the medical community is trying to invent right now. If it were true that an autoimmune disease had a CURE, we would be hearing it loud and clear from all quarters of the globe. Waiting it out could produce the same before/after pictures, so I would not presume that the claims are 100% accurate.

Thank you for your reply. It has been very scarey thru all this and anyone who can help me learn what is going on I greatly appreciate it. I thought I would go ahead and let you know that after I spoke with a doctor in my area who had a testimonial on the website I mentioned as well as his patient who went thru this "cure", I have decided to go ahead and try it. It is homeopathic supplements but I will not come off my levothyroxine. As for autoimmune diseases I know scientists are starting to make giant leaps and bounds with even a possible cure for diabetes thru surgery. I will be more than happy to let every one know when I start and my progess thru the process. Please pray for me. I should mention that the Dr. in India claims this is not a cure for G.D. and the maintaining of the proper thyroid hormone levels are very important.

As for the patient who did this treatment, he was afflicted with TED for many years and his proptosis before he started the treatment was at 30. Today he says he is at 24 and even though he still has prisms for double vision, they are minimul and he can rotate his eye (didn’t ask which one or both for the proptosis) 30 degrees but anymore than that he will have slight double vision. He said the first treatment (3 months) he didn’t notice any real change, and did the 2nd treatment. After which he saw a dramatic change so he finished with a 3rd treatment with even more change until it tapered off and the Dr in India concluded his eyes probably wouldn’t get any better than they already have. He did try the steriods years before and they did nothing but make him gain weight and a couple of things that I didn’t write down. He did not have radiation nor the orbital decompression, however he did have surgery on his eye lids. He also mentioned the only thing today he does is use eye drops but he said that was probably more for his age (he is in his 60’s). I also asked if he had any side effects and he told me no except that his brittle nails improved. Even today all is well and he did this this in 2004 (I think)

[Ski]

#1074080

As long as your other doctors are informed about anything you add to your treatment regimen, you should be safe, and I wish you luck.

I would like to point out that the "typical" curve of TED symptoms and changes could easily have produced the same results in the patient you refer to. In other words, the improvements could have occurred exactly that way just because that’s the way the disease operates. As long as this treatment doesn’t harm you, of course you are free to try whatever you like.

We at the GDF cannot say that any information is accurate until it has been proven and scientifically accepted, because we are in the business of telling you what we KNOW, not what we’d like to believe, or what may look good or sound good at first blush. I hope you understand.

We realize there is research being done on autoimmune diseases, and we get "the latest" at our conferences each year. There are inroads being made into research on autoimmune diseases, but the fact is that we are absolutely at the far edges of even understanding autoimmune disorders, much less curing them. At October’s conference, we were told that a genetic defect has finally been identified that exists in all autoimmune disease patients, which is remarkable, so things are coming along. Still, this is just the first brick in the road. We would need miles of road to say we fully understand and can cure.

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