[sjharner2001 November 14, 2008 at 10:09 am Post count: 18]

#1075406

I’m interested in hearing the doses used also.
Janet

[sknell9 November 14, 2008 at 2:35 pm Post count: 5]

#1019978

I was just diagnosed with Graves on Tuesday. My endo is recommending RAI and after doing some research on PTU I believe I am going to proceed. I am having a consultation with a surgeon on Tuesday just to make sure.

My question is that he said my does of RAI will be 15 millicuries. Do any of you know what dose you got and whether mine is a high does or not and if I should expect any side effects or anything because of it. From what my endo said, I shoudln’t sleep in the same bed as my husband for 2 days, but that if I just wash the bedding from our guest room where I’ll be staying that it should be fine for guests to stay in there a few days later.

Any thoughts on all of this?
Thanks!!

[Ski November 14, 2008 at 3:35 pm Post count: 1569]

#1075407

I had RAI twice (please do not panic ~ I was an unusual case). The first time my endocrinologist did not have a discussion with the radiation/oncologist who formulated my dose. We had agreed that I wanted an ablative dose (I wanted to start from zero), and the dosing doctor had the feeling he could give me "just enough," so he gave me 10 millicuries. It was not enough. The second time I was given 22 millicuries.

Let me put this into perspective, and give you some of the mechanics of the RAI as well.

First, when you have a scan, the result is a percentage of the iodine that is taken up into the thyroid. When we are sickest, our thyroid takes up a LARGE percentage of iodine. So, at an 80% uptake, my initial effective dose was 8 millicuries (80% of the 10 millicuries in the dose). After one RAI, my thyroid was affected and had a much lower uptake ~ 25%, I think ~ so for the second RAI, I took 22 millicuries but only retained 5.5 millicuries in my thyroid.

Here’s what happens. We take the RAI, and most of it goes to our thyroid (thankfully, the only place in the body that iodine is taken in). It begins destroying thyroid cells. It does most of its work in 6 weeks, but can continue to destroy cells for up to six months.

The RAI that is NOT taken up into our thyroid leaves our body by fluid waste channels (mostly urine, also a tiny bit in sweat and saliva). Any of this "cast off" RAI ingested by another person would go to their thyroids and cause damage. Not much, but why risk it? As a result, we keep to ourselves for at least the first couple of days, as that "cast off" RAI is leaving our body. After 48 hours, that’s done. We are advised to drink LOTS of water and make sure we visit the toilet every hour or so, to limit any exposure within our bodies and flush out the excess ASAP.

Remember please that thyroid cancer patients can receive up to TWENTY TIMES the doses we get (yes, hundreds of millicuries), and even that dose of RAI is considered safe in the long term.

The dosing calculation is part art, part science. It is derived from your level of hyperthyroidism, your uptake, and other details. It is NOT an absolute. You may want to ensure that your endocrinologist and radiologist/oncologist have a discussion and AGREE upon the dose you need, it will probably eliminate at least a little of the uncertainty.

[sknell9 November 14, 2008 at 3:41 pm Post count: 5]

#1075408

Ski, thank you for all of the information. I am not sure how "serious" my condition is. My initial TSH was <0.004 which was caught by my OB. My endo ran a T4 and T3, but won’t get those reults until next Tusedaay. He did not hesitate in saying I can do the RAI next Wednesday. I imagine he will review my T3 and T4 to double check my dosage. I also did not do an uptake test that I’ve heard lots of people mention. I guess this just means he thinks he’s giving me enough of a dose to kill it off substantially enough regardless of my uptake reading? I’m definitely new to this, so I’m not sure if I should be at all concerned that he is going straight to RAI without doing an uptake test.

[Ski November 14, 2008 at 4:23 pm Post count: 1569]

#1075409

I would discuss this with your doctor, because the uptake is pretty good information, but perhaps he has some other logic for figuring a dose. It’s worth a frank discussion. I skipped asking "what dose will I have and why," and I regretted it.

Unfortunately, NONE of our test results (not TSH, not T4 or T3, not uptake percentage) give us an accurate idea of "how sick we are." That is an unknown, better evaluated in hindsight.

Still, you’re probably not SO sick that you must rush. You have time to come to a complete understanding, at least.

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