[Anonymous]

#1152206

I am especially interested in the answer to question number 5 regarding smoking. Also, here’s another question: I opted for thyroid surgery rather than the rai treatment because my endocrinologist cited a recent study he’d read which indicated that rai treatment could worsen the eyes. My surgery is done now, and he did forward me a copy of the study, but I’d be interested in the response from your panel.

Thanks,
Lori

[Anonymous]

#1152207

Dee darling, first I’m very proud of you! What an honor! My question dealing with Graves is this,it’s obvious to me that since my feet stay ice cold, swollen and purple, painful when walking,and at times my fingers and hands too, that Graves has somehow affected the way my heart and blood circulation are pumping. How does Graves affect the circulation and how can I solve my foot problem. Not one doctor here can answer my question. They all say Graves has nothing to do with it. I never had any feet problems till I went severely hypo. So I know Graves is at the root. Could you please find something out for me?
Thanks

Miriam

[Anonymous]

#1152208

“They” are dunderheads(not at all related to the Flatheads, the Fatheads maybe). Ask them to explain Reynaud’s Syndrome which frequently occurs when go hypo. Suggest you do a little ‘net research on the issue too. The “they” who attended me explained in great detail.

[Anonymous]

#1051675

Next Thursday March 12, 1998, I have the honor of being asked to go to a Neurology
conference to discuss a recent surgical procedure for Graves’ eye
disease that I had on 12/4/98 with my neur-opthamologist. (Craniotomy/ 4 wall decompression)
It is my understanding there will be physicians, specialists
etc. at this conference. I never went to one of these before and I am going to
use this opportunity too; as a two way street. I was told there will be questions
asked of me. I in turn want to ask questions to a room of specialists.
I am going to sketch out an outline but I need your help and will try to
ask as many questions to the house that I can. Please send me a list of your questions
or post them on the BB I think the questions should be based on graves eye disease.
Some questions I would like to ask are:
1. Would anyone be interested in a marketing and designing with me
a TSH meter? (Only kidding, haha)
2. For graves disease what research or studies are being done at this time?
and what if any progress is being made in this area?
3. Do you forsee any additional treatment options at this time other than the “Big 3”?
4. Would the new gene therapy that is being discussed in the media work for graves
disease?
5. It has been noted that smokers have a greater tendency to have the
severe graves eye disease. What are you feelings on this statement and what studies
are available to support this?

I am sure I will come up with more but I have run dry for now. I have till next week
So post if you like and I will do my best!!!

Peace and happiness,
Dee

[Anonymous]

#1152209

Dee,

How about mentioning the need to promote awareness of both PCPs and endos concerning Graves Eye Disease? All Graves patients should be advised to see an opthalmologist for a baseline, even if they aren’t presently experiencing eye problems, how do we get this message out to the doctors? Also, there seems to be disagreement as to whether to wait for the eye problems to burn out, or do radiation treatment to try to stop the progression. How about some clarification about that?

[Anonymous]

#1152210

Since these are neurologists, it might be an opportunity to ask questions about any research they might have about the impact of thyroid hormone(too much, too little) on concentration and thought processes. Dazed’s posts today made me think of that.

Also, vis-a-vis the smoking issue: A week or so ago there was post on the board about an article in one of the medical journals on the impact of various treatments and the eye disease. Actually, the article mentioned was an “editorial”, but at least one study was mentioned. Anyway, there was a web address given for reading this article. I asked my endo about the smoking issue, too, after reading that article. Apparently, there is research that shows that smokers have a higher incidence of eye problems — it was called an “aggravating” factor in eye disease. According to my endo, however, she knows of no studies done which show that stopping smoking has any ameliorating impact on the eye problems. You might check on that, too.

B.

[Anonymous]

#1152211

Bobbi’s last two posts were perfect! I was thinking about those same two issues, no documentation on the mental fog and if I quit smoking would the eye problems go away. She just has such a better way of communicating what I was thinking. Go Bobbi!

I hope they give Dennise a transcript of what is discussed at the conference. It is so cool that she was invitied to their conference. I am even happier that she is one of their sucesses. I remember praying for her when she went she had to have the emergency operation.

How often do those eye doctors get together and talk about these Graves’ Disease issues? Do any of the doctors on the NGDF board attend?

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