[Anonymous August 13, 1997 at 4:00 pm Post count: 93172]

#1158170

thank you for taken the time to share
with us the information that you learned

thanks,steve

[Anonymous August 13, 1997 at 7:46 pm Post count: 93172]

#1054215

Hi Em, Well, we missed you, and you missed us. It cost me quite a bit to go to the conference…you missed that.

On Friday, we arrived and there were info tables set up by our sponsers.
there were various handouts made available. Haven’t read them all yet.

Friday evening was the Pharmacist…told you a bit about that, and the banquet.
Saturday morning Dr. David Cooper spoke to us. 1. His father had GD in the 1940’s , had surgery, took no hormones and did fine. 2. When Dr. Cooper was in college, his eyes bothered him, he was very nervous..and yes he had GD too. He took ATD’s ( anti-thyroid drugs)and had a serious reaction to Tapazole. ( He got arthritis). He went into remission, then later as a medical ( read stressed) intern, he relapsed and took drugs again. This time he got agranulcytosis, recovered and was treated with RAI.
3. Shortly after her own mother’s death, Dr. Cooper’s mother was diagnosed with GD. She took ATD’s too, but ultimately had to get RAI.
After RAI her eyes became very problematic. 4. Dr. Cooper’s 12 1/2 year old son was loosing weight and “having temper tantrums”. Yes, he too has GD. As there is a possibility that their is a familial pattern to the tendency to react to the drugs, this young person was given RAI.

Dr. Cooper is from Sinai Hospital, Baltimore, MD. He certainly is an encouragement that one can make it through this disease and meet a full life face on. He is professionally very focused on this disease. He is one of three co authors of the book handed out to us. “Your Thyroid, A home reference.”

He believes that stress is a very important precipitating factor to those who are genetically susceptible to GD. He says there is less evidence for an infectious agent. He said that 30 to 40 % of folks with GD get the eye problems, but that if you cat scanned the entire population of GD he believes 100% would have some effect on their eyes, even though not apparent.

He suggested that your blood tests are a more valid indicator for your physician than how you feel…………………………………….
He said there are no side effects to RAI…………………………
* But He showed us two studies that suggest RAI causes worsening of eyes. One was a randomized study, not likely to be repeated in the U.S.
That means that 104 people were randomly assigned various treatments.

38 had ATD’s 4 of them ( 10% ) had eyes get worse post-treatment
37 surgery 6 of them (16%) had eyes get worse post treatment
39 RAI 13 of them ( 33%) had eyes get worse post treatment

The other study was comparing those who had RAI and went hypo for a while, verus those who immediately were gioven thyroxine. This study led Dr. Cooper to suggest that one of the liability factors for the eyes is going hypo. My doctor has told me this as well.

He did a cost comparison of treatments, which was a reminder that in the world of HMO’s and such, even the choices we have now could recede from our future grasp. ATD cheapest..surgery way higher.
He has a preference for brand names of drugs…consistency achieved by same maker.
He believes that all the treatments are effective and all have their disadvantages.
We had some painful excitement during this presentation as one of the participants suggested that perhaps, based on her past eight years of suffering, she has a different disease than he does. As unfortunate as this type of encounter can be, given the posts I have read this last year, I imagine there are many others who could have expressed disagreement and such with this presentor.

There was absolutely no light shed on the immune system aspect of the disease (for me) by any of the presentors. As one hand out said…
Gd has ” every feature of an autoimmune process, but that remains to be proved…… future investigations should focus on identifying the fundamental pathology….” No kidding.

Well, don’t be too frustrated with us conference goers…it is hard to cough it all back out. I got my house clean for showings today, so as I sat here, at least I didn’t mess anything up.

I’ll be back again when able. Jeannette

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