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gardiner 09-10-2010 08:04 AM

radioactive iodine details? risks?
I will be having the RAI treatment hopefully sometime in October now that my completion surgery to remove my remaining thyroid is done. I was told this was a drink or is it a pill? If a drink, what is the taste? Are there any long term risks that have been documented? At what point does the scan come in? Thanks in advance for your help!

kwebster 09-10-2010 07:31 PM

Re: radioactive iodine details? risks?
Hi! I'm assuming the RAI is for post op ablation for thyroid cancer?? It is a pill. The strength depends on what you're being ablated for. Cancer normally gets a big dose - 150 millicuries for me was the max. I had mine done in the hospital (2 night stay) since my state does not allow otherwise. Anyway, met with the nuke docs before. No real long term side effects unless you need to have it done multiple times (they told me 5 in a lifetime). I went to my hospital room with the nuke people, arranged my things for the stay, swallowed the pill with water. The nuke people immediately measured the radioactivitiy - oh, it's big time glowing!!! Then they got the heck out of there! Seriously, they slid my food tray into my private room, buzzed the intercom to check on me. You will be isolated!! The nuke people are the only ones that will check on you and measure the radiation level.

The only side effects I had were tiredness on the second - fifth day. I wasn't that nauseous. You need to bring sour lemon drops. That helps keep your salivary glands working. You will also need to shower frequently and stay away from others. They should give you the protocol. My scan was exactly one week later after I was discharged from the hospital. Since you are still radioactive, you just lie down and get scanned. Hope this helps. Let me know if you have other questions.

gardiner 09-13-2010 07:45 AM

Re: radioactive iodine details? risks?
Yes, I had my right lobe removed because of a nodule that had follicular cancer cells, and than my left lobe which was benign. It sounds like Virginia must have strict regulations re this. I don't believe I will have to be hospitalized. Is the scan a CT type of scan? I read an article re CT scans which said that they have a high dose of radiation. Do you have to repeat this in 12-18 months? I was told this by an endocrinologist, but hope not. I had hoped to have it done sooner, but could not get a post op appointment until a month after my surgery, so I don't know how long it will be before I see the nuclear medicine doctor. Would just like to be through with everything. What is the dose of synthroid you take now? Thanks for your help?

Reece 09-13-2010 08:43 AM

Re: radioactive iodine details? risks?
Actually, this is not a CT or like a CT, it's actually an old fashioned "whole body scan" where they give you radioactive Iodine (usually a pill) and trace it based upon measurement of "uptake" of thyroid tissue that remains in your body after the surgery. Wherever there is thyroid tissue, it will be destroyed, and they will check it with the scan. I had a one year follow up scan, every facility is different. Some places do a pre-scan, others do a pre and post scan before and after they give you the ablation pill.

In the hospital I had it done, I felt like I went back to the 1950's or something, and they never updated the old clunky equipment. I was sent home, so I stayed with my parents so I wouldn't be with my children at the time. I had pre-and post scan, so I was running back and forth to the hospital for a week to get it done.

Make sure to ask for "thyrogen" so you don't have to go without thyroid meds to prep---they do it all over the world, but the US docs are really hesitant about it for no real scientific reason.

gardiner 09-13-2010 09:59 AM

Re: radioactive iodine details? risks?
Thanks, Reece. I will ask about the thyrogen. I don't know if I will be in an office setting or hospital. They say it depends on my dose. Hope the equipment is not antique!

kwebster 09-14-2010 07:38 PM

Re: radioactive iodine details? risks?
Nah - - all the equipment is up to date. What state do you reside? I had the scan done after the RAI and then 1 year to the date I had the surgery. Am preparing to have it again in two weeks (it will be 3 years since the last one). It's a lot of prep but worth it. Your endo should be the one following your treatment and post cancer scans, etc.

Are you taking meds now?? I am on 137mcg of Levoxyl and 5mcg of Cytomel. Honestly, it's taken almost 2 years to get regulated and it does fluctuate. Keep the faith and stay positive.

Kathy :)

gardiner 09-15-2010 10:12 AM

Re: radioactive iodine details? risks?
I live in New York, near Albany. I am taking 125 mcg of levothyroxin. I had some thyroid level tests done last week that I am waiting for the results of......have to say I don't feel great. I am going next week for my post-op appointment and then I should be referred to the nuclear medicine doctor. Thanks for your encouragement!

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