# What is RAI?



## namebug

I've read a few threads, but it's hard to put together what RAI (radioactive iodine) is. I thought it was a pill. I don't know what the process entails.


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## joplin1975

Mine was a pill, yes. Although I've read the some folks get some kind of injectible. Essentially its a "therapy level" dose of radioactive iodine (hence the "RAI") that ablates all or part of the thyroid.

For me, the process went like this:
Tuesday - I check into the hospital, get a pregnancy test, and once that comes back negative, get a small "tracer" dose of radioactive iodine.

Friday - Go back to the hospital, get another pregnancy test, run up to nuclear medicine, and get a whole body scan. The "tracer dose" of the iodine will cause any residual thyroid tissue to "light up" on the scan. Wait for the radiologist to read the scan. Based on if there was tissue detected (there was for me) and how much is remaining, the radiologist will dispense a "therapy level" dose of the radioactive iodine -- a much higher dose than the tracer dose which will begin destroying residual tissue.

Monday - Go back to the hospital for another whole body scan (the radiologist wanted to make sure he saw a decrease in the amount of tissue that showed up on the scan so he knew that the RAI was "working").

There are isolation protocols to follow after the therapy dose...those protocols vary based on state regulations and the amount of radioactive iodine you received.


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## namebug

Thank you. It sounds more complex than I assumed. I thought I would just take a pill. Of course, I may not need it at all, but it is helpful to know what it's about.


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## joplin1975

I don't think everyone goes through that process, but maybe? My surgeon said "everyone who has lymph node involvement requires RAI"...the nuc med tech clarified that by saying "everyone who has larger tumors and lymph node involvement will get a whole body scan to determine if there is residual tissue, but not everyone gets a therapy dose" (although my impression was that most do), hence the multi-step process. It's one of those things...if you have to do it, you have to do it, but if you can avoid swallowing readioactive material, well...that's probably a nicer option.


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## namebug

I don't think I have lymph node involvement. The lobe had a multinodular goiter on it, which is in a pathology lab now. If there were any signs of cancer, I hope it was self-contained. I agree that swollowing a radioactive substance sounds alarming. I hope my biggest problem now is just adjusting the levothryoxine level.


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## Serenia

I was telling my endo earlier this week that I didnt want RAI - I have a strong GAG reflex and would choke on a alrge horse pill and then hate to have to be apart from my family for a week.

He said - No we give it to you in Liquid form, and you stay in isolation in hospital for 2 days - then you go home amd stay away from others in your family as if you have a very bad cold. (no kissing or close contact). 
So you cant hug or kiss your kids and spouse for a few days.. is it really that simple now?


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## joplin1975

I had 100mci, which is a fairly large dose. I could not sleep in the same bed with someone for 10 days, used disposable utensils for the first three days, used the guest bathroom exclusively and kept a "I have a cold"-like distance from my family for ten days.

Everyone is different, but my doc said inpatient isolation makes people nuts, so we did everything to avoid that.


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## Want2FeelGood

Serenia said:


> I was telling my endo earlier this week that I didnt want RAI - I have a strong GAG reflex and would choke on a alrge horse pill and then hate to have to be apart from my family for a week.
> 
> He said - No we give it to you in Liquid form, and you stay in isolation in hospital for 2 days - then you go home amd stay away from others in your family as if you have a very bad cold. (no kissing or close contact).
> So you cant hug or kiss your kids and spouse for a few days.. is it really that simple now?


The 75 mci pill was super small and only a few days isolation needed. No side effects for me. It was a fascinating process and "a breeze" in retrospect.


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## nodakmom

Want2FeelGood said:


> The 75 mci pill was super small and only a few days isolation needed. No side effects for me. It was a fascinating process and "a breeze" in retrospect.


I had 50mci and my glow pill was tiny. I said "that's it?" lol. The tech said years ago they used to be horse pills but like the rest of medicine its come a long ways.


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## namebug

What kind of side effects are there - if any?


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## CLRRN

Mine was a tiny pill too.

I had minimal side effects-change in taste initially and then a few weeks later, headache and some nausea. The whole process was very interesting. Got the pill and they said "good bye, you can leave now" and out the door I went.


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## namebug

Medical treatment seems more "casual" than in the past. At first I thought the surgery would be same day, but I was glad the stay became overnight because it is hard to manueuver and to think clearly. The nurses and techs were really helpful, but then staying two nights would have been too long. I guess most chemo for cancer is out patient, so it's logical the RAI would be, too.

I'm glad you didn't have overwhelming effects from it.


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## joplin1975

*namebug*, I found this article to be helpful with regard to the side effects of RAI (although admittedly its slightly dated and skewed toward high-dose patients): http://www.hkcr.org/publ/Journal/vol8no3/full/127-135 Side.pdf

I did not have any issues with salivary glands. I have yet to go to the dentist (January), so I'm not sure about any impact on my teeth enamel.

As I said, I felt pretty crummy after RAI...more so than after my TT, which I realize sounds a bit odd. I went into the RAI with a TSH or 71 and felt like I went from hypo to HYPO. Muscle and joint aches, couldn't get warm, severe fatigue, slight neck soreness, etc. I stayed on the couch under a down comforter (in early September no less!) for two straight days. But, then, as soon as I hit the 48 hour mark, I felt remarkably better. *shrug* Who knows...


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## namebug

Today, I'll find out whether I need RAI or not.


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## namebug

I don't need the RAI! So I just have to work with the Levothyroxine dosage.


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## joplin1975

Yay!  Happy holidays!


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## Octavia

Mine was a liquid. It was in a metal cup, and I drank it through a metal straw. The doctor waited a few minutes, then placed a yard stick between me and him, measured my radioactivity with a little machine that beeped like crazy, and sent me home, with the "stay away from others" protocols.

I know you don't need it now, but I just wanted to post this for future readers.


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## teri2280

I'm pretty late on this post, so I apologize, but the radioactive iodine is a treatment?? My doctor had me do it as a test....... I'm kinda confused.....

I went to the local hosp, took a pill around 8am, went back around noon, and they did some imaging, almost like an xray (not quite, but that's the best way I can describe it). Whatever the results were, it prompted my doc to order an ultrasound. I'd had no imaging whatsoever before the radioactive iodine.


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## sonnyjane

teri2280 said:


> I'm pretty late on this post, so I apologize, but the radioactive iodine is a treatment?? My doctor had me do it as a test....... I'm kinda confused.....
> 
> I went to the local hosp, took a pill around 8am, went back around noon, and they did some imaging, almost like an xray (not quite, but that's the best way I can describe it). Whatever the results were, it prompted my doc to order an ultrasound. I'd had no imaging whatsoever before the radioactive iodine.


Don't worry, it can be both. So, with a smallllll dose, it can be used a marker to measure uptake in the thyroid, which is what was done in your case it sounds like.

For others that are actually trying to destroy thyroid tissue, a much higher dose is given. For example, I had RAI because I had cancer and they removed my whole thyroid, so they wanted to destroy any little *scraps* of thyroid left.


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## teri2280

Ok....That makes sense. Thanks!!!!


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## Octavia

teri, for your scan, they may have give you I-123, rather than I-131. The I-123 is a scanning version of RAI, whereas I-131 is generally a treatment version.


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## teri2280

Thanks!  I got a few more answers at my surgery consult the other day, too... She said that after the surgery I'll have to have a full body RAI scan (imaging) done to make sure the cancer hasn't spread anywhere. (She's 99.9% sure it's cancer, but she won't be 100% til she takes it out and has it biopsied.) She's "pretty sure" that it hasn't spread, though...She checked my lymph nodes and said that's the first place it would probably spread to, since they're so close, but she'll have me do the full body RAI just to be safe.


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## Andros

teri2280 said:


> Thanks!  I got a few more answers at my surgery consult the other day, too... She said that after the surgery I'll have to have a full body RAI scan (imaging) done to make sure the cancer hasn't spread anywhere. (She's 99.9% sure it's cancer, but she won't be 100% til she takes it out and has it biopsied.) She's "pretty sure" that it hasn't spread, though...She checked my lymph nodes and said that's the first place it would probably spread to, since they're so close, but she'll have me do the full body RAI just to be safe.


Oh, wow!!! You are fortunate to have such a good and very well informed doctor.

Keeping you in my thoughts and prayers for all of this.


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