[JeanMS]

in reply to: I chose RAI Treatment #1061704

I agree, Kimberly. I chose RAI because it seemed a better alternative that surgery, and because doing pills is a bit wearisome. I do think getting some good explanation about what to expect is just plain good, conscientious medicine. Saying that your best guide is your doctor is pointless when you’ve lost faith in your doctor. I contrast this with my experience in having knee surgery. The doc and his staff spent three hours talking with me, making sure that I understood it and felt comfortable about the procedure. He let me ask questions until I felt I could practically recite the procedure by heart. was told what to expect before, during and after, what PT and OT would be like, and attended a class on knee surgery. Here, there’s been no talk expect beyond saying that I’ll probably end up hypothyroid and be put on a Synthroid. I’m getting sent to nuclear medicine as if all I’m doing is having a blood draw. If I hadn’t gone online and read the instruction sheets from the Endocrine Society and other clinics, I would have not had any idea about the precautions. That sort of absence of communication isn’t only frustrating, it’s creepy.

[JeanMS]

in reply to: I chose RAI Treatment #1061701

My memory is vague, but I do recall some problems with Synthroid. A quick check on the Web showed that there was a recall in 2009, and I may be thinking of that. I know of problems with Armour simply because a friend who was taking it would report that from time to time she had difficulty in getting it (not to mention the difficulty of getting a physician to Rx for her because apparently doctors prefer you take Synthroid or its generic form over Armour.)

In a perfect world, doctors would have a way to treat Graves, rather than destroying the organ it attacks. But then in a perfect world, you wouldn’t get Graves. My beef is mostly that some of the after affects and care instructions for this RAI treatment is mysterious and unsettling. You are, after all, dealing with radioactive matter, and, yes, I know it has a short half-life and it only affects the thyroid. But if it were really so harmless, then why the instructions to avoid close contact with others and to make sure you void yourself daily, etc. etc. Some of the stuff I’m reading here is the first time I’ve heard about it, and that’s what’s alarming to me.

Perhaps my problem is that my doctor never told me about this. I don’t think he’s trying to deliberately deceive. I think it’s more he considers it so routine to him as to note require anything more than passing attention or discussion. That will have to change before I can be comfortable with doing this, and maybe perhaps continuing in his care.

[JeanMS]

in reply to: I chose RAI Treatment #1061694

Apologies for double posting. Still learning the ropes here.

I am preparing for an RAI treatment (doc has had me stop my PTU for 7 days), but reading this thread has me thinking twice. I had no idea that there’s a chance of a hyper-surge after treatment. That’s GTK. I’m doing this to put an end to the up-and-down of going hyper then hypo then hyper. I’ve never been thrilled about the idea of killing an organ that GD aside, is working fine. But trying to control the hyper-stages is proving difficult for me.

My biggest apprehension about the treatment (aside from the radioactivity, of course) before reading this was having to rely on Synthroid for the rest of my life and facing a situation of it not always being available either due to production problems (which has occurred) or disasters (which we are having more of than I care to see.)

My questions coming to the board regarding the treatment specifically were more along the lines of should I board my cat while I’m radioactive. I hadn’t expected to see that you could actually end up being miserable for two months. Makes me rethink this.

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