Anyone ever have radioactive iodine treatment?

[SlimShAdY]

Because I'm supposed to have it in November :o

They said I got alot of blood work to do, I can't take my medication for 3 weekscause of some radiation pill and scan so they're gonna inject thyroid hormone into me...Umm ok That sounds scary for some reason....

I have to be on a "low iodine" diet which means no meats.... So uh what the heck am I supposed to eat??? I rather eat nothing for 5 days then eat pasta... Seriously. lol.

Anyone have experience with this? I so don't know what to expect .. :confused: :confused:

[furmom]

I've had RAI twice. August 2000 and October 2000. I assume you are hyperthyroid? Do you have Graves?

I think you are confusing have the thyroid uptake and scan with the RAI I-131 treatment (you will probably have both at different times).

With the uptake and scan they see how much irradiated iodine your thyroid obsorbs over a given period. I think it is after 6 hours and 24 hours. You will go to the doctor twice for this over 2 days. It is not painful in the least. They use a "geiger counter" looking thing pointed over your throat to detect how much your thyroid is taking in, hence it is called an "uptake." The irradiated thyroid is given in an injection. This uptake and scan will determine for your nuclear medicine doctor what the correct dosage of the radioative iodine will be for you when you get the RAI treatment.

The RAI (I-131) treatment is different. You swallow a pill (or two - depending on the dosage required) and that is it. You may get up to 29.9 milicuries (the way the radiation dosage is measured) without having to be hospitalized. If your dosage exceeds 29.9, you will need to be in the hospital in a special room for a couple of days. Most people are able to do it on an outpatient basis in the doctor's office though. The radiation literally kills off your thyroid. It destroys the thyroid cells.

They will tell you to stay away from pregnant women, small children and animals, and not to sit to close to anyone (less that 4 feet) for extended period of time. My husband slept in the guest room and I put my dogs in the kennel for the 2 days that I was "radioactive." You have to be careful with your urine, and flush the toilet twice (the radioactivity can be discharged in your urine).

By law, you have to have a pregnancy test no matter what age you are, if you have not had a hysterectomy or experienced menopause.

It's really not painful or scary at all. This will be the easiest part of getting your thyroid back under control. The hard part comes next when you try to get your medication right.

I have had GD for about 4 years, so if you ever want to talk, let me know.

:)

[furmom]

Just another thought. I think you might be confused on the "no iodine" thing. You can eat meat, just not seafood, salt with iodine, or vitamins that contain iodine. Did they give you a list of do's and don'ts? My doctor did.

Also, what meds are you on now? Is it beta blockers or thyroid meds?

[SlimShAdY]

Guess I am confused lol :o

They didn't mention to me anything about the "uptake". I had a scan done 2yrs ago but I never got the follow up treatment which was the pill, like you said. I don't know if I was hyperthyroid or not before, My thyroid basically didn't work and I had/have :confused: thyroid cancer. They took most of it out 2 yrs ago. Afterwards, I had the scan where I took some red dye pill and they xrayed it with a machine... But never the followup iodine treatment. (insurance issues :rolleyes: ) So ya thats what I'm in for now.. cept I guess I gotta do the scan again since its been 2 yrs and they got to see if it spread or not. =/

Any weird side effects from the iodine or anything? I'm also scared about going without medication for 3 weeks because I've missed my meds for a week before and I always feel dizzy and like crap and I always gain weight and get bloated..

And I'm already on thyroid medication, which is getting changed either today or tommorrow (waiting for dr to call) so does that mean its gonna take even longer for them to get it right?

I didn't get a list or anything yet, they said I have to take another blood test and everything first. What will I be able to eat? Can I atleast eat chicken or drink a protein shake? lol

[SlimShAdY]

And about the animals thing.. I'll probably be in my room most of the time.... My cat and dog are always in my room and sleep on my bed and stuff.. So if I'm in my room all day, do I have to like spray my room down or something before they come back in? <<Can I feed him lol
or is their food gonna be poisioned or something..What the heck? lol:confused:

And the doctor said if I go to the bathroom, I'd have to wash the toilet before anyone else uses it... Eck.. sounds like a pain in the a... I rather not drink so I don't have to go to much. :rolleyes: :(

[furmom]

Yeah, unfortunately, if you are already on thyroid meds, you have to go off of them for a little while. Be prepared for the ucky hypo feeling again :(

I assume they are finally following up on the partial thyroidectomy with the radiotion treatment?

I didn't really have any side effects from the RAI except for a funny taste in my mouth, and the fact that I swear that I heard my thyroid "popping." Kind of like a snap, crackle and pop in my throat LOL. But it went away in a few days.

You should be able to eat normally. Before the test, just don't eat seafood or a lot of seaweed salad or anything with a LOT of iodine. Red meat and chicken, etc., should be fine.

Okay, now I am gonna say this, and you are probably not going to like it but...

You really need to focus on your HEALTH right now, not weight loss. The weight loss will come. Your thoughts and focus should be on healing your body. You have a disease and you have had cancer. You need to rest and heal. Don't worry about a few pounds of bloat. Within a few weeks after the RAI, you will be on the road to recovery. You need to rest and eat RIGHT. Fresh fruit (low glycemic) and veggies. Give up the coke, it's garbage. Drink lost of water (or seltzer water with lemon if you need the fizz.) Take your vitamins.

It really matters NOW that you don't do further damage to your body. You will heal faster.

Okay, off of my soapbox. It's just that I've been there, and learned the hard way.

Love,
Donna

[furmom]

Your furbabies really should stay in the other room (close the door that night and don't let them sleep with you). See, the radiation in your body could get sucked up in to their little bodies. What you (and a grown person) can take, they can't. This only lasts for about 48 hours, so it's really not to hard to deal with. I guess the I-131 has a short half life. I didn't want my little guys to get cancer or something just because of me.

My doc only said to flush the toilet twice, or if I got some urine outside of the toilet bowl (like I'm gonna due this LOL), to clean it with bleach with paper towels, and flush the paper towels. They will give you a little bag, so that if you throw up, you use that bag and take it back to the doctor's office to be disposed of. What a joy huh? I didn't get queasy though.

Good luck! and try not to worry.

Donna

[SlimShAdY]

I assume they are finally following up on the partial thyroidectomy with the radiotion treatment?

Yep thats what they're doing.

And yea I didn't like reading the rest of your post, but thanks for saying it..lol I needed to read that :o I know I sound more concerned with the side effects and my weight, but its just because I've gained and having such a hard time with the meds I'm on now and everything. Since the begining of all this, I've always been misinformed by my doctors on what exactly was going to happen to me. I was basically told that after they take my thyroid out, they'll give me a pill to take everyday and I'd like magically be back to normal.... That soo didn't happen! So I'm just scared they're not telling me everything and it's going to happen all over again. =/

Thanks alot for all the info. Helps more hearing about someone elses experience rather than just what the dr says lol :spin:
I just hope my dog and cat will understand all this...Cuz I'm gonna be in for a major guilttrip, especially if I just leave em outside all day :bash: :daze:

[SlimShAdY]

Guess I can scratch this whole post. I'm not gonna be doing any of that for a while now because the cancer spread and 4 of my lymphnodes enlarged...Not that I have a clue what any of this means. Alls the dr told me was I'm in for is another biopsy and most likely another surgery =/ Happy Birthday to me. :rolleyes: :(

[spraymom]

I've had RAI twice. August 2000 and October 2000. I assume you are hyperthyroid? Do you have Graves?

I think you are confusing have the thyroid uptake and scan with the RAI I-131 treatment (you will probably have both at different times).

With the uptake and scan they see how much irradiated iodine your thyroid obsorbs over a given period. I think it is after 6 hours and 24 hours. You will go to the doctor twice for this over 2 days. It is not painful in the least. They use a "geiger counter" looking thing pointed over your throat to detect how much your thyroid is taking in, hence it is called an "uptake." The irradiated thyroid is given in an injection. This uptake and scan will determine for your nuclear medicine doctor what the correct dosage of the radioative iodine will be for you when you get the RAI treatment.

The RAI (I-131) treatment is different. You swallow a pill (or two - depending on the dosage required) and that is it. You may get up to 29.9 milicuries (the way the radiation dosage is measured) without having to be hospitalized. If your dosage exceeds 29.9, you will need to be in the hospital in a special room for a couple of days. Most people are able to do it on an outpatient basis in the doctor's office though. The radiation literally kills off your thyroid. It destroys the thyroid cells.

They will tell you to stay away from pregnant women, small children and animals, and not to sit to close to anyone (less that 4 feet) for extended period of time. My husband slept in the guest room and I put my dogs in the kennel for the 2 days that I was "radioactive." You have to be careful with your urine, and flush the toilet twice (the radioactivity can be discharged in your urine).

By law, you have to have a pregnancy test no matter what age you are, if you have not had a hysterectomy or experienced menopause.

It's really not painful or scary at all. This will be the easiest part of getting your thyroid back under control. The hard part comes next when you try to get your medication right.

I have had GD for about 4 years, so if you ever want to talk, let me know.

:)
I know this was back in 2002 from you so I hope you are still on here. I have gd and have decided to have rai after much thought. I want to know if you have to have total body scan after rai 131. I don't have thyroid cancer and so I don't want a body scan and subject myself to all that radiation. Did you just go in and take a pill and then go home? Thank you Melissa spraymom~hotmail.com

[Nancy LC]

I had RAI treatment, really wish I hadn't but there's no fixing that.

They just give you a RAI and send you home with some advice on things like sleeping with someone.

[spraymom]

Why do you wish you had not done rai? Im at my wits end and thought I had finally made a decision. Now i don't know. Has anyone had rai and thought is was a good thing? I am on ptu but not helping much. I take blood thinner because of blood clots, and you are not really supposed to take ptu with this. It can make your blood thinner so I go once a week for labs. I don't want to do this forever. Surgery is risky for me with clotting disorder so I don't know what to do. I really thought rai was the answer. I have extreme symptoms with graves!