# Upcoming RAI....? (LOADS of questions)



## teri2280 (Feb 7, 2012)

What should I expect? Will I be referred to an oncologist, or will it just by my endo? Endo says I'll be off work for 3 days (I work around food) because of it? (True? Or longer?) Saw something on google about having to go off my Levo. for 3 weeks (I think that's what it said) before RAI....Isn't that going to royally mess me up???? (REALLY worried about this one, as my doctor seems to have found the perfect dosage for me from the get go....I started the Levo the day after my TT, and my #s were normal before TT, so I've NEVER been hyper or hypo.) Low iodine diet? Sounds rough (I'm not exactly what you'd call health conscious lol. I don't eat McDonald's for every meal, actually rarely, but I don't use "organic-whole-wheat bread", either).....?

Sorry if I sound like I'm stressing, but, yeah, well, I am. LOL.

One other question I'm gonna pop in here too. Kinda off topic, but while I'm posting a gazillion questions anyway....

Since the cancer got into my lymph nodes, does that mean I'm basically screwed? I always thought that once cancer got into lymph nodes in, say, your neck, it was then super easy for it to travel to the lymph nodes in, say, your leg. Please feel free to correct me, as I'm hoping to be wrong....


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## joplin1975 (Jul 21, 2011)

Well I sure hope lymph node invasion doesn't mean the end is near. I had lymph node invasion. I was planning on sticking around for a long time. 

The cells that spread are thyroid cells so they will uptake the radioactive iodine, killing the cells. I expect to need a second round, but its generally very effective.

The restrictions you get vary depending on the regulations of your state and the size of your dose. I am in NY and received 100 millicurries. I had to be out of work for three days and was advised to, if possible, stay home a week (I worked from home).

Yes, you have to "go hypo." The TSH tells the remaining thyroid cells to, essentially, work harder. The harder the cell is working, the more iodine it will absorb. Some people also are instructed to go on a low iodine diet. The treatment itself involves swallowing a pill (with before & after scans), but its the preparation is not fun. My TSH was 71 at the time of the RAI and I was running out of gas.


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## nodakmom (Oct 15, 2011)

I had my RAI ablation a month after my TT, so I never even started thyroid replacement. I will be getting a body scan sometime this summer/fall and I imagine I'll have to go hypo for it by using Cytomel (t3) for a couple weeks then nothing for 2 more. My Endo coordinates the process, I've never seen an oncologist. joplin is right, thyca cells no matter where they are will uptake the I-131 and be killed. As for being hypo, you'll get tired very easily and the brain fog is terrible, but keep in mind its a limited time and hopefully those around you are supportive and understanding of that time till you are back stable. The low iodine diet doesnt' mean eating uber-healthy and it doesn't mean low-sodium. Be sure to read lables looking for salt - the hardest part is you don't know if it's iodized salt or not so I opt not to chance it. There are plenty of foods you can find that have "no salt". You probably will have to cook from scratch more, but remember it's limited time. I only had to do the LID for 1 week. Check out www.thyca.org for lots of information to build your knowledge, they also have an excellent LID cookbook that's free http://www.thyca.org/Cookbook.pdf . Let's see... I had to be in isolation for 4 days, I swallowed that tiny little pill on a Thursday and was back to work on Monday. My family went to the grandparents for the weekend so I had the house to myself.

I know it's overwhelming right now, but you can get through this!


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