[DianneW]

#1073634

I know of someone who had three RAIs before she finally got better. It’s rare, but occasionally does happen.

What concerns me about you is that you say you haven’t seen an endo. Do you mean you haven’t had a blood test since your last RAI? Not even treatment with beta-blockers or antithyroid drugs while you wait for the RAI to work? There are many ways to deal with your thyroid levels if the RAI isn’t working for you, but you have to find an endo who will work with you and monitor your blood levels.

If you’ve been gaining weight it’s possible the RAI has worked better than you think. Insomnia and palpitations can also be a symptom of hypothyroidism, but you can’t know unless you have your labs taken.

You say your eyes are affected now as well. For that reason alone it’s especially important to monitor your thyroid levels. If you become hypothyroid it’s important to correct that as soon as possible so the eyes don’t get worse than they already are. For your eyes you should be seeing an ophthalmologist who sees Graves’ Disease patients (not just ANY ophthalmologist).

I know it’s difficult to handle these expenses without insurance, but right now it’s especially important that you see both an endo and an ophthalmologist, even if you have to work out a payment schedule or borrow from friends or relatives. If your last RAI was going to work, it’s had time now to do most of what it’s going to, so it’s way past time to see exactly what good it did for you and discuss where to go from there.

Please let us know when you’ve seen the doctors?

[DianneW]

#1073635

Deb,

You asked if RAI causes cancer. Studies done over MANY years in large patient groups have shown a surprising slight reduction in the total numbers of cancer cases compared to patients who haven’t had RAI. Within that group there was a slight increase in thyroid cancer and cancer of the small intestine, but it wasn’t clear if this was caused by RAI or by hyperthyroidism. Researchers have since concluded that ablating the entire thyroid will eliminate that slightly increased risk of thyroid cancer. The total picture is such that any increased risk is so small that it’s not worth worrying about. Statistically speaking, you’re much more likely to die in a car accident, or of heart disease, or scores of other common ways.

That didn’t sound very good, but I hope it eases your mind.

I’m sorry you had to be one of those who needed two RAI treatments and I hope when you see your endo you’ll find that the second one worked better than you think it did.

If it wasn’t effective, sometimes it takes such high doses to destroy thyroids that are resistant to RAI that surgery is recommended rather than a third attempt at RAI. The reasons aren’t well understood that some thyroids are difficult to destroy with radiation, but all the same, some are. This is a discussion you’ll need to have with your endo if the need arises. I hope that won’t be necessary.

Best wishes to you.

[itzdeb]

#1019718

Has anybody had two of these and still symptomatic?
Last RAI last May 08. Recently having trouble seeing (worse every day), overwhelming heart palps, insomnia, the usual…..Most worried about about sudden vision trouble.
But what the heck?? Do these RAI’s cause cancer? Haven’t seen an endo yet because I don’t have money or insurance. Please could I hear from someone who has made a decision on what to do this time. I keep thinking this is over and now I just want to cry. And I’m gaining weight, but I read about that and am optimistic about evening out when I’m normal. Doctors are absolutely clueless, talking like I’m stupid and my symptoms are insignificant.
When should I insist that my eyes get treated (I also have the buggy eyes)? By an opthamologist or endo? It seems that my life could change by making a wrong decision.
I’m scared.

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