[Anonymous August 1, 1997 at 4:46 pm Post count: 93172]

#1158727

Frankly, I would find another doctor. Not only can something be done for graves eye disease, if something is not done in some cases you can lose your sight. I wouldn’t want a doc with this attitude treating me.

[Anonymous August 1, 1997 at 5:01 pm Post count: 93172]

#1158728

Taskit,
I think I tend to agree with you. A doctor that is reluctant to discuss options such as radiation therapy or plastic surgery seems to be unsure of what he is talking about. What else is he not telling you? Maybe, he just thinks you couldn’t handle information? Do you have to get a referral to see another endo? If so, speak to your PCP to see if they can refer some one else.

Pat

[Anonymous August 1, 1997 at 6:04 pm Post count: 93172]

#1054460

Hi, All

I had my post-RAI 6-week check-up yesterday and came away with some info (that made me feel very misinformed) and some questions. Firstly, I was informed that Graves is not a “kind” of the hyperthyroidism I’ve experienced, but rather the hyperthyroidism is part of Graves, which is a “three-part” disease, the other two parts being Graves eye disease, and the thickening of the skin (and the “thousands” of symptoms associated with each part…) This seemingly simple piece of information has given me new perspective on the disease, and interestingly, a new respect for it. Somehow, that simple piece of information is new to me; although, it seems, it’s not new to many of you. It’s the small steps in life that take us to our final destination (where ever that may be!).

Also, in speaking with my endo, he said if I did develop the eye disease “there’s nothing that can be done anyway.” After listening to our “BB posters” that have had things done, I was surprised to hear him say that! I rebutted his statement with the info that some of you have had radiation treatments and cosmetic surgery (is that correct?), and his comment was, “Well, yes, but it really doesn’t do anything.” So I asked him, “If you had Graves eye disease, would you do anything about it?” He said he would not. I asked if that was based on medical info or a personal choice, and he came forth that it was a personal choice. Interesting. I’m not quite sure about retaining his as my endo. His medical “persuasion” was far too clouded with regard to dispensing info re: eye disease, than is comfortable for me. He also said I have a very slight, slight chance of developing Graves eye disease since I’ve gone through RAI.

What do you think? I’m curious…

taskit

[Anonymous August 1, 1997 at 6:37 pm Post count: 93172]

#1158729

Wow Taskit – Is it possible for you to get a new Endo? Possibly one that knows about Graves’ Disease?

My eye disease started a year after RAI right out of the blue. If he is an American Endo maybe he should read his own web site of American Assoc. of Clinical Endocrinologists. There is a link to this on the NGDF Board. Better yet – maybe you should print him a copy and show it to him! It does say that severe Graves’ Ophthalmopathy occurs in a minority of patients, however, I happen to be one of that minority. It’s not worth seeing an Endo who isn’t going to spot or treat this disease if it starts.

Hopefully everything will go smoothly for you from now on and you will never have to experience and problems with the eye disease but it’s better to be safe than sorry.

Wishing you the best, SAS

[Anonymous August 1, 1997 at 10:17 pm Post count: 93172]

#1158730

Hi Taskit:

Reading you post immediately brought to mind what both my own endo and opthalmologist have told me repeatedly over the last two years. That is that the only thing predictable about the course of Graves Disease is it’s unpredictability from one individual to the next.

When your endo told you “there’s nothing that can be done anyway” should you develop the eye disease, I hope that he was speaking in the broadest sense of the issue. There is nothing that can be done definitively to predict or control the auto-immune response in and of itself as it manifests itself in each of our bodies. I think however that it is our right to be fully informed by our respective physicians as to all our treatment options, in spite of their (doctors) own biases. At least you “knew enough to know” what to ask, thanks to the information shared on this forum.

Hope you will continue to progress following your RAI without further complications. Take care.

Luci

[Anonymous August 2, 1997 at 7:11 am Post count: 93172]

#1158731

Hi, Taskit:

Endos do not treat Graves’ eye disease, ophthamologists do. And it may even be a specialty within the opthamologist specialty. That’s why it is important for those of us with Graves to have an ophthamologist monitoring our eyes — no matter what course of thyroid treatment we are on. It would be nice if endos and ophthos were equally knowledgeable about all aspects of this disease, even better if they were in agreement all the time, but that isn’t always the case. At least one person on this board has a good endo who disagrees vigorously with her good ophtho. I guess what I’m trying to say is that you need to try to evaluate your endo’s skills and expertise apart from his eye disease opinions. If you think he’s a good endo, stick with him. If not, find someone diferent. But find a good ophthamologist, too.

Wishing you good health,

Bobbi

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