Re: -TED comments and questions

[Guest guest]

Hi ,

The progression of my eye disease took longer than 6 months. I started

having watery eyes and light sensitivity after I was hyper for about 6

months. Then after another 6 months and beginning Tap, I got lid retraction

and even went to the doc once thinking I had pink eye. Another 6 months and

my eyes began to swell underneath and my left eye was protruding. Three

months later I took RAI thinking it would HELP my eyes, and within 2 weeks

had two swollen, protruding eyes and double vision. Because the RAI

exacerbated my eye disease, I will never know what the natural progression of

the disease would have been had I stayed on Tapazole.

I was finally referred to an ophth and she wanted me on steroids. However,

she talked to my endo (fired #2) and they decided the side effects of

steroids would be worse for me than the benefits. At that time, my TSH was

97 and I was so depressed and anxious that the steroids probably would have

put me over the edge.

I told my ophth that radiotherapy was not and would never be an option for

me. Fortunately, a study had just been published showing that radiotherapy

is not beneficial, so I didn't get an argument there.

My ophth has been urging me for a year to have orbital decompression, and I

nearly went thru with it in August this year. But I had my endo run my TSI's

and they were elevated (325, normal limits <130!) so I put on the brakes for

surgery. I am so glad I listened to my friends here, because one month later

I was hypo again and if I had had surgery, I would've been in a hell of a

mess. My eyes got worse from being hypo (dry and painful) and I would not

have healed properly.

The one thing that has helped my eyes is antioxidant supplements and flaxseed

oil. I have swollen conjunctiva and the one on my right eye is almost normal

since I have been taking supplements. However, since I am hypo again, I have

an ulcer on the conjunctiva of the left eye (this eye will not close while I

am asleep) that I am using a steroid/antibiotic salve on and the doc will

check it again the 1st week of Dec.

One thing that has been a downfall for me with the eye disease is I was kept

hyper so long in the beginning stages of it and since RAI I keep gradually

getting more hypo. I have no set point, and really haven't for the 3 & 1/2

years that I have been battling Hashi's and Graves. It is so important to

get stabilized and stay there. My eyes have really paid for what a slew of

incompetent docs have let me go thru.

Pam L has taken steroids for TED, so I hope she will jump in with details of

what she went thru with them. If anyone else has taken them, will you also

give us any info from your experiences with using them in TED treatment?

How do I cope? Some days I don't. But I am a Christian and I have peace in

the assurance that God uses everything for good. I have to look at this

thing as a blessing. I have made some friends here and at Mediboard that I

know will be lifelong friends for me! And I can help other people who are

going thru this and be His witness at the same time. So it is not a curse.

I would love to be healed of this nightmare, but if that is not God's will,

then I will try to do as He would want me to.

I feel so sad when I hear stories like yours and others going thru this. It

breaks my heart. It is one thing for me to go thru it, but when I hear of

other people's problems with TED, it is almost too much to bear. I guess

because the pain is so raw in me that I can feel your pain too.

I pray that you will have medical care that was better than what I accepted.

If there is ever anything I can do, please write me. I hope this has helped

and not made things worse for you.

God bless,

Hashi's, Graves, TED worsened by RAI Sept. 2001

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