# insisting on lower dose RAI



## crimebuff (May 25, 2012)

Just read here about the HIlo Study that lower radiation levels is just as effective as higher doses-I'm going to insist of a dose of no more than 50 millicuries-the study said 30 were as effective as 100-now I just have to find a doctor who will do what I want-just received the papillary cancer-encapsulated- 2 mm.-diagnosis today and was told to get RAI-going to endo tomrrow-wish me luck!


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## Octavia (Aug 1, 2011)

Interesting. Only 2 mm, and they want you to have RAI? No lymph node involvement?

I'm curious about the study you're referring to...can you post a link? (I haven't seen it, but would like to!)


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## JPGreco (Mar 2, 2012)

I know I saw the study. It was for post TT cancer patients. Basically said that the dose can be lowered for the same affect.

I guess the reasoning is that 100mcg is more than enough to kill an entire thyroid gland, so why use that much when there is no thyroid gland.


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## Octavia (Aug 1, 2011)

Huh...makes intuitive sense...


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## joplin1975 (Jul 21, 2011)

Yeah, I'm surprised that you would need RAI. I would get a second opinion and/or make sure they do a pre-RAI scan to see if there really is they'd tissue left.


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## crimebuff (May 25, 2012)

OOPS! it's 2 CM,NOT MM


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## joplin1975 (Jul 21, 2011)

Ohhhhhhhhh, ok, makes a huge difference.

I can't comment on the study...have not read it...but I would still insist on a pre-RAI scan. I see all these people talking about the dosage they'll be getting and it doesn't make sense to me. How do you know the dose when you don't know how much thyroid tissue remains? I mean, RAI is certainly less of a science and more of an art, but why not go into it informed so you aren't getting more than absolutely needed?


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## teri2280 (Feb 7, 2012)

^^^^^OOOH OOH OOH ME ME ME!!!! LOL. Sorry, folks, had to!


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## teri2280 (Feb 7, 2012)

joplin1975 said:


> Ohhhhhhhhh, ok, makes a huge difference.
> 
> I can't comment on the study...have not read it...but I would still insist on a pre-RAI scan. I see all these people talking about the dosage they'll be getting and it doesn't make sense to me. How do you know the dose when you don't know how much thyroid tissue remains? I mean, RAI is certainly less of a science and more of an art, but why not go into it informed so you aren't getting more than absolutely needed?


Because half of the endo's around don't even have a clue. LOL. Can ya tell I'm a little hyped up about my RAI tomorrow?  SO ready to kick this LID to the curb and get back on my pills. (At least I can laugh about it...  )


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## teri2280 (Feb 7, 2012)

crimebuff said:


> Just read here about the HIlo Study that lower radiation levels is just as effective as higher doses-I'm going to insist of a dose of no more than 50 millicuries-the study said 30 were as effective as 100-now I just have to find a doctor who will do what I want-just received the papillary cancer-encapsulated- 2 mm.-diagnosis today and was told to get RAI-going to endo tomrrow-wish me luck!


I know you don't know my story, but I'm one of those people who (from what my endo has told me) are just getting loaded up with a 100mci dose of I-131 (TOMORROW! YAY!!!). No scan before, to even see how much I have left post-TT, and while it was in 2/12 lymph nodes that were removed, we don't know if it even got past those 2. I, like you had 2cm, but I had 2 nodules, (one was the 2.x cm, the other was 1.x cm, both were malignant, plus the 2 lymph nodes). 
I do agree with Octavia, though. Why give someone like me a 100 mci dose (especially without a pre-scan) if you're not even sure what you're trying to knock out? I'm not trying to brag, but my surgeon has a GREAT reputation, and she's not only one of the better endocrine surgeons (not just an ENT or gen. surgeon) in the state of Ohio, but she's the HEAD of the endocrine dept. at CLEVELAND CLINIC. It doesn't take a rocket scientist to figure out that my surgeon didn't leave much left in there for the RAI to be that high. (Now if it spread to somewhere via the lymph system, I could totally see the dosage being that high, but my endo is planning on first scan being post-RAI.)
But, whatever. It's tomorrow, I'll be off the LID within 24 hours, and taking my meds again Sat morning. (YAY!)


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## JPGreco (Mar 2, 2012)

Found the study or at least a semblance of it.

http://medicalxpress.com/news/2012-05-trial-thyroid-cancer-treatment-safer.html

Teri, best of luck to you. Sounds like they are just shooting in the dark with you. It's a shame that it seems that way with so many. I can't begin to count my blessings it seems as I apparently have a severe case, but my experience is anything but.

I have RAI on Monday, but its only about 15mcg


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## crimebuff (May 25, 2012)

No preRAI scan for me either, but the endo was aware of the study and said he was going to give me 50 mc which was what i had wanted. Hooray!


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