[Anonymous]

#1020180

Hello Sarah,

Your posts were removed because our posting rules state that any URL that you wish to post must be reviewed by the NGDF staff first. You posted the URL without asking it to be reviewed.

Because there are a number of websites on the Internet that provide information about our disease and not all of it is correct. We’re very familiar with the British study. As a matter of fact the NGDF was in attendance at the conference this paper was presented at, that is how we know what the outcome of the study was.

When the study was put to peer review, the outcome presented by the presenters ended up being slightly different. When looking at the overall general population and not just people with thyroid disease the death rate was approximately the same as the general population. What they determined was that there was a higher death rate of people with Graves’ disease, either due to thyroid disease or other issues such as cardiac problems or other autoimmune disease issues. In other words the study of those with Graves’ disease, showing a trend did not compare Graves’ disease patients with the general population.

This is one reason that we ask to preview URLs that you wish to post. The NGDF is a member of all the major medically run thyroid organizations. The NGDF strives to provide an accurate and full picture. If websites are posting studies or papers that did not passed peer review, than we do not link to them or allow false information to be presented on our page.

Membership in the NGDF does allow you to post on our bulletin board however we do ask that you follow the basic posting rules. Had you sent us that URL we would explain to you that that study did not pass peer review. It is fine if you personally wish to use that study for your personal decision, no problem whatsoever with that however we will not put it on our board for other people to make a decision, when that paper did not pass peer review.

If you wish to have your money back we will refund it. We are a nonprofit organization that has posting guidelines, if you dot not wish to follow our posting guidelines we will refund your money, please e-mail director Dr. Nancy Patterson at nancyngdf@yahoo.com.

As far as the treatment options go there are three proven treatments RAI/131, anti-thyroid drugs and thyroidectomy. All were given equal consideration. Since RAI/131 is controversial in many areas, we ensure that the information provided on our site about RAI/131 is indeed accurate. We do not link to studies or papers that have not passed medical peer review.

We’re only a click away,

Jake George,
Facilitator
National Graves’ Disease Foundation
Co-Author: “Graves’ Disease In Our Own Words”

[Anonymous]

#1076248

I did not get to read your original post but from reading everyone else’s it sounds like, you are attempting to do as much research as you possibly can in making your decision. I have spent hours pouring over research medical, as well as alternative. For myself, I have to know that I have done everything possible to control this disease and still live a healthy life style before I harm my thyroid especially when it is a victim, just like me, of this auto immune disease. I am very fortunate, I don’t have the symptoms that alot of people who post here have. I have been advised that my Graves Disease became active from the stress of losing my husband. I am so much better today then I was a year ago and I am truly greatful for that. I don’t know what the future will hold for me and expect that I will make the choice to do RAI at some point if my symptoms become worse. Make sure whatever journey you are on, that you are working with your doctor and one that you trust. Research is a powerful tool just surround yourself with people that are qualified to help you decipher what is real and what is fiction. Good luck to you on your journey. Claudia

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