RAI dosage confused

[aljack33]

My husband had his endo appointment today and now I am confused. I don't think she see much of this, So I am coming here asking your opinion:)

She told us that my husband would receive a dosage of 100 to 150 for someone with his cancer - spread to lypmph nodes. I thought I read on here that if it's over 100 you would have to be in the hospital? Is that correct. She said nothing about that. She said he would get probably close to 150 and it would just be a pill and off he would go.

Also she said he should be on the low iodine diet 3 weeks before the RAI, but gave us no materials on it:confused0003:

I guess I am just confused and not all confident in his treatment.

[joplin1975]

Hospitalization rules vary by state. I'm in NY and would have to have been admitted for anything over 100, but I'm fairly certain my cousin's wife (Indiana) had 125 and was not hospitalized.

There are some good online resources re: LID diets...I just don't have the links handy (on my phone).

How's your husband feeling?

[Octavia]

Here's a low-iodine cookbook:

http://www.thyca.org/Cookbook.pdf

[Octavia]

Also...did the doctor tell him to stop taking his thyroid hormone replacement for a few weeks prior to the RAI? (He will need to do this so his TSH level increases.)

[Andros]

My husband had his endo appointment today and now I am confused. I don't think she see much of this, So I am coming here asking your opinion:)

She told us that my husband would receive a dosage of 100 to 150 for someone with his cancer - spread to lypmph nodes. I thought I read on here that if it's over 100 you would have to be in the hospital? Is that correct. She said nothing about that. She said he would get probably close to 150 and it would just be a pill and off he would go.

Also she said he should be on the low iodine diet 3 weeks before the RAI, but gave us no materials on it:confused0003:

I guess I am just confused and not all confident in his treatment.

I would express my displeasure to the source. In a nice way, of course. You will be paying enough; that I know.

http://img.photobucket.com/albums/v129/LuLu1471/hugs-17.jpg

[joplin1975]

Also, just so you know, while my surgeon set everything up, I had to work directly with the folks in nuclear medicine for all the details. They gave me the specific directions, decided on the final dosage, gave me the option of hospital vs. no hospital etc etc etc. It's not that my surgeon was incompetent, but rather deferred to the "experts" in nuc med.

I presume you may know this, but if he is not hospitalized, it's not exactly a "take a pill and off you go" sort of a thing. Depending on his dose and the regulations mandated by his hospital and state, he will have to do some kind of self-isolation. For example, I had to sleep alone for 10 days, use disposable utensils for the first three days, and use a separate bathroom etc. Everyone seems to get different directions, but there will be some level of restrictions.

[katbid23]

I had a dose of 150 and was sent home to stay in isolation for 7 days. It does depend on your State's guidlines when it comes to radiation and the allowabe dosage. If your husband is going to receive thyrogen shots prior to the RAI, then he will be able to stay on his thyroid hormone. But if he is not going to get the injections, he will have to come off his thyroid replacement. Hopefully he will get the injections because going the other way is not easy. You may also want to get him some sour candy to suck on after his RAI. They recommend the soure candies so that his salivary glands don't get fried by the RAI. I sucked on the candies and have not had any problems with my glands. Some people have had a lot of issues with the glands after RAI.
Best of luck

[aljack33]

Thank you for all your replies. We live in Wisconsin so we must not have those guidelines for hospitalization so it sounds like he will not have to be in the hospital. Which is good.

Thyrogen is not an option. Our endo said there was none available. She is having him stop his thyroid med on November 28 and the RAI is December 16. The endo said those 3 weeks are not going to be fun for him or for me.

He is feeling pretty good. He over did it last night. He went for a workout - he is less than 2 weeks post surgery. Which was fine, but he over did himself. He was completely wiped out when he got home and exhausted. But other than that, things are going well. I think he is ready to get this over with.

I think we are getting frustrated because our surgeon and endo give us this information, but when we talk to someone else, it was the wrong information. So, our surgeon deferred us to the endo but gave us different information, then our endo gave us different information and referred us to the nuclear med team. It's just seems no one is on the same page. That is what is frustrating. I think they are good at what they do, I just don't think they do a lot of this type of thing where we are from.

We did get a sheet on his isolation recommendations, so we are set with that.

Thanks for all your LID recommendations. I will start looking at those.

[joplin1975]

Sounds like you are on track. I know it's frustrating, but hopefully this will all soon be a distance memory.

As someone who totally and completely overdid it while I was off all thyroid meds, tell you husband NO WORKOUTS during his hypo phase. Don't even think about it. It did (and continues to) drive me crazy to be so sloth-like, but I have to tell you that, for me, RAI was much worse than the surgery itself because I did not stop during the hypo phase. My guess is that I was "living off" of my residual thyroid tissue (I never went on replacement meds after surgery), got REALLY hypo (thanks to not taking it easy) and when the RAI wiped out my remaining tissue, I felt like I had been hit by a mack truck. I was so upset because I was told the RAI was the easy part...and it WOULD have been had I not been such an idiot. :) So, during those three weeks, he's to lay low and not do a thing!