# RAI Scheduled!!



## teri2280

June 1st. (My hubby's birthday, ironically.) Not looking forward to the 6 week + long LID, but ok.

Quick question for ya guys. Endo is having me do the ablation, and then 10 days later, the full body scan. Will I have to be on the LID for the scan also?


----------



## Andros

teri2280 said:


> June 1st. (My hubby's birthday, ironically.) Not looking forward to the 6 week + long LID, but ok.
> 
> Quick question for ya guys. Endo is having me do the ablation, and then 10 days later, the full body scan. Will I have to be on the LID for the scan also?


Probably but others would know more than I on that subject matter. If they are using an iodine contrast dye, I think it would be very likely that you have to stay on the LID.


----------



## joplin1975

I did not have to do the LID (thank you all things chocolate!), but was told to "pretend like I was still preparing for the RAI" until the follow-up scan was complete (mine was three days after receiving the therapy dose).


----------



## teri2280

joplin1975 said:


> I did not have to do the LID (thank you all things chocolate!), but was told to "pretend like I was still preparing for the RAI" until the follow-up scan was complete (mine was three days after receiving the therapy dose).


Can I ask why no LID?? (I'm beginning to think that low iodine is what got me into this mess in the first place, but when I ran it by my endo, he just blew me off.)


----------



## joplin1975

teri2280 said:


> Can I ask why no LID?? (I'm beginning to think that low iodine is what got me into this mess in the first place, but when I ran it by my endo, he just blew me off.)


I honestly don't know. Pre-surgery I had my RAIU scan at our local hospital and they said I didn't need to do it. I then had a pre-RAI scan, RAI and then a post-RAI scan at another larger hospital and during that process, they all said what mattered was a high TSH. Nothing was said about the LID. There are a number of people who have had to do it and a number who haven't, so it seems it's really dependent on your provider's protocol.

I'm assuming I'll have to do another round of RAI in the fall. In retrospect, I'm kinda regretting no putting myself on the LID in hopes that maybe the first time around would have knocked it all out, but...water under the bridge.


----------



## Octavia

There is absolutely no need whatsoever to do the LID for 6+ weeks. Conventional wisdom says to start it about 2 weeks prior to your RAI dose, and continue until your body scan is done. That is cruel and unusual punishment to even suggest doing this diet for 6 weeks...no need whatsoever!

I am surprised at the 10-day lag between your RAI and your scan. Mine was 3 days, just like joplin.

When did your doctor suggest stopping your thyroid medication? (Should be 2-3 weeks before the scan...if he said to stop it 6 weeks prior, then I would suggest this doctor is not at all experienced in this area and perhaps you should find someone who is.) I hate to sound like a nay-sayer here, but just looking out for you!


----------



## teri2280

I stop the levo (and start cytomel) this friday. 2 wks later, I stop the cytomel. Just under 2 wks later, I have the blood tests (T4, TSH, thyroglobulin, and iodine), and if everything checks out, I have the RAI just over 2 wks later.

Apr 20- Stop levo, start cytomel.
May 4- Stop cytomel.
May 14- Blood work.
June 1- RAI
GUESSING June 11- scan.

By the time all is said and done, I'll be on the LID for one day shy of 8 weeks.

I did an at-home iodine test yesterday. Got a tincture of iodine at Walgreens, applied it to my skin. From what I'd seen online, if you had normal iodine, it'd take 4+ hours for the iodine to go away. Mine went away before 2.  Yuppers, I'm REALLY starting to think that low iodine caused this mess.


----------



## teri2280

And, yeah, I'm kinda starting to wonder if my doc knows wth he's doing, but unfortunately, the closest endo is an hour away other than him.


----------



## joplin1975

Whoa....you have to wait nearly two full weeks AFTER your blood work for the RAI??? That's insane.

I had my blood drawn one Tuesday, results came in on a Wednesday, Nuc Med received my file on Friday, took the tracer dose on Tuesday, had a pre-RAI scan and received my therapy dose on Friday, and had the post-RAI scan on Monday.

By the way...and I do think this is important...are they doing a pre-RAI scan? They really, really, really need to do that to determine the amount of RI you need. There's always a chance (albeit small) that you do not have cells left over and could go home without receiving a therapy dose. And, if you do need a therapy dose, how can they determine what how much to give you without knowing how much tissue is left over?


----------



## teri2280

joplin1975 said:


> Whoa....you have to wait nearly two full weeks AFTER your blood work for the RAI??? That's insane.
> 
> I had my blood drawn one Tuesday, results came in on a Wednesday, Nuc Med received my file on Friday, took the tracer dose on Tuesday, had a pre-RAI scan and received my therapy dose on Friday, and had the post-RAI scan on Monday.
> 
> By the way...and I do think this is important...are they doing a pre-RAI scan? They really, really, really need to do that to determine the amount of RI you need. There's always a chance (albeit small) that you do not have cells left over and could go home without receiving a therapy dose. And, if you do need a therapy dose, how can they determine what how much to give you without knowing how much tissue is left over?


Yup, he said ten days later for the full body scan.

I'm pretty ****ed off at the moment. I have been nothing but honest with him and his secretary since this all began, and he knows that I think I either A) have been living with this cancer for a year (or more) before the tt or B) for sure had the goiter for a year or more. They also know my concerns with being low iodine already and that contributing to all this, in addition to the iodine test i did at home. (Called the secy. today, endo just blew me off.) I mean, I could understand him being a little waifish if I told him that "some friends of mine on a thyroid message board" said xxxx, but the information i'm getting is from MULTIPLE well-known sites (thyca, cleveland clinic's website, mayo clinic's site, etc). (NOT saying I don't trust your guys' opinions/thoughts or anything lol...just that he's going to take into consideration something from a reputable site faster than if I say "people I know who've already done this", and I knew to get more than just he-said-she-said info for him to even POSSIBLY listen to me.)

Nope, no pre scan either. Got copies of the orders for blood work in May, and included in the envelope was the order for the RAI for 100 mci of I-131 on the first of June. From the sounds of things, I won't even SEE my endo between now and the RAI.


----------



## teri2280

****ed = the not so clean version of ticked. lol. Awesome auto correct on these forums!


----------



## teri2280

OH SNAP! Uhh....I was googling again. If you have a sufficient iodine level, it should take 24 hours for the iodine to fade. (Ha! I just said snap! )

OK, now I'm debating calling either my PCP and requesting an iodine test now, before I get too far into this LID (requested one yesterday through the endo, and was blown off, of course), or calling my surgeon who did the tt. (The problem with the latter, of course being that my endo referred me to her. I didn't get the impression that they were "buddies", so to speak, but both of them talk(ed) highly of each other.) The worst part of all this is that ALL WEEKEND, the hubs and I ate nothing but seafood for dinner. (I had a feeling it would be my last time to be able to eat seafood for a while, and wanted to make the most of my freedom.) And the iodine was still gone after less than 2 hours.

What do you guys think? What would you do?


----------



## Octavia

I'm sorry...I normally don't get on the "look for a new doctor" bandwagon, but that schedule he has you on makes no sense at all. He is spreading a 3-week process into 2 months, and the worst part of it (other than the diet) is that your scan is nowhere near your RAI dose...so much of it will have faded by then!

I have a scan this Friday. Here's my schedule:
- I stopped my Levo 3 weeks ago. 
- I started the diet 2 weeks ago.
- I had labwork on Monday (two days ago) to make sure my TSH was over 30 (it's 104). 
- Just took my RAI pill today, a few hours ago.
- In two days, I get my scan done.

Your schedule seems completely against conventional wisdom. Are you sure there are no radiation oncologists or other doctors you could call for a second opinion? I just get the feeling this doctor isn't really caught up on the latest treatment plans.

Oh, and if you are off your Levo for 6 weeks, you will become a zombie...as you referred to it in another thread!


----------



## teri2280

Octavia said:


> I'm sorry...I normally don't get on the "look for a new doctor" bandwagon, but that schedule he has you on makes no sense at all. He is spreading a 3-week process into 2 months, and the worst part of it (other than the diet) is that your scan is nowhere near your RAI dose...so much of it will have faded by then!
> 
> I have a scan this Friday. Here's my schedule:
> - I stopped my Levo 3 weeks ago.
> - I started the diet 2 weeks ago.
> - I had labwork on Monday (two days ago) to make sure my TSH was over 30 (it's 104).
> - Just took my RAI pill today, a few hours ago.
> - In two days, I get my scan done.
> 
> Your schedule seems completely against conventional wisdom. Are you sure there are no radiation oncologists or other doctors you could call for a second opinion? I just get the feeling this doctor isn't really caught up on the latest treatment plans.
> 
> Oh, and if you are off your Levo for 6 weeks, you will become a zombie...as you referred to it in another thread!


I think it's time for me to call my surgeon. She did say to call if I ever had any questions....


----------



## Octavia

Good plan!


----------



## sportdan30

I'm scheduled to have my RAI pill tomorrow morning at 9. I was on a LID for the past two weeks, and I am so ready to be done with it. I'm a little concerned about how I'm going to react to the RAI. I assume you have to stay on the diet for 48 hours afterwards, correct?

Good luck Teri! I'm going to load up on some movies and hopefully relax this weekend.


----------



## Andros

sportdan30 said:


> I'm scheduled to have my RAI pill tomorrow morning at 9. I was on a LID for the past two weeks, and I am so ready to be done with it. I'm a little concerned about how I'm going to react to the RAI. I assume you have to stay on the diet for 48 hours afterwards, correct?
> 
> Good luck Teri! I'm going to load up on some movies and hopefully relax this weekend.










And good Luck!

Will be interested to find out more about you and why the RAI. Start your own thread anytime!!

Movies sound good to me!


----------



## sportdan30

Andros said:


> And good Luck!
> 
> Will be interested to find out more about you and why the RAI. Start your own thread anytime!!
> 
> Movies sound good to me!


Thank you Andros. I'll be more than happy to. Can I start it in the RAI forum or if you have a better suggestion, please let me know.


----------



## Andros

sportdan30 said:


> Thank you Andros. I'll be more than happy to. Can I start it in the RAI forum or if you have a better suggestion, please let me know.


That sounds like a winner since you are currently engaged in that process!!


----------



## teri2280

sportdan30 said:


> I'm scheduled to have my RAI pill tomorrow morning at 9. I was on a LID for the past two weeks, and I am so ready to be done with it. I'm a little concerned about how I'm going to react to the RAI. I assume you have to stay on the diet for 48 hours afterwards, correct?
> 
> Good luck Teri! I'm going to load up on some movies and hopefully relax this weekend.


Thanks, Dan!

On a side note, if you're ready to be off the LID after just 2 weeks, I'm guessing it's a VERY good thing I already told the hubby to plan on dinner at Texas Roadhouse after this is all done. LOL.


----------



## sportdan30

Teri,

I was ready to be off the LID after a few days! I am so ready for a big cheesy pizza. What frightens me is losing my sense of taste for a week or two.


----------



## teri2280

sportdan30 said:


> Teri,
> 
> I was ready to be off the LID after a few days! I am so ready for a big cheesy pizza. What frightens me is losing my sense of taste for a week or two.


Ha. Yeah, I'm already there, after just 2 and a half days. 

I'm not going to follow it 100% for the first 4 weeks. I spoke to my surgeon (well, through her nurse, but close enough lol) who did the TT, and she said that the home iodine test I did is pretty accurate. She said that the iodine should have been visible for at least 8 hours, when it went away before 2. She couldn't give me an accurate guess of HOW low I am, but she said that I must be pretty low if it went away that quick, and it's very possible that low iodine is what "got me into this mess" in the first place, and was very surprised that I came to the conclusion with just the help of google. Even my surgeon couldn't figure out why he's got me going on the LID already.

I asked my surgeon about "cheating" for a while. She said to go for it, and said to follow it at about 50% the first 2 weeks, 75% the 3rd and 4th, and 100% from then on out. She said that if I really wanted to, I could probably skip it totally the first 2, but said that this will prepare me for it and it won't be so bad on me when I do go 100%. I'm not sure that I'll even follow it like she said, but for the first few weeks, I definitely won't feel too guilty if I'm craving milk and have a 4 oz. glass of the stuff, or if, some night next week or this weekend the hubs and I don't feel like cooking and decide to order a pizza.

I forgot to ask the nurse about having the ablation so far before the scan, but we were kind of playing phone tag today since I was working. I figure I'll call again on Mon or Tues (my next days off work) and ask about it then.


----------

