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Old 03-01-2013, 11:40 PM   #1
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Prepping for I-131. Questions!

I just had my first appointment today with the oncologist to plan for my I-131. As I've only been off my Synthroid for two weeks, I expected to have to wait probably another month. But, with my TSH at only 18, he told me to start my low sodium diet now and come back on March 12 for the I-131. I asked what the levels should be and he said he'd like to see them at least doubled. Besides the fact that I'm starting the LID before I've even had time to read the materials and plan my shopping, I'm worried that I won't have had enough time off the Synthroid and off the iodine for the I-131 to be most effective. He's not rechecking the levels until the morning of the treatment. I don't want to have to repeat the treatment just because the first one was rushed. I would like to hear from others who have been through this already. How long did you prep before your I-131 and what were your levels going in?

Also, I was told by the doctor I needed to be off work 2 to 3 days since I do direct care in a group home. Then the physicist came in to discuss the post-treatment precautions. He as much as said, "Don't listen to the doctor. I'm the physicist and I say one day is long enough to stay home if you feel well enough to go back." Then he proceeded to tell me about all these precautions I need to take for 2 to 3 days. If I'm still taking precautions, why would I go back to work? I came home and looked it up on line and there I'm reading that I need to take these precautions and stay away from other at-risk people for at least five days. Would like to hear how long others were told to stay home and take precautions.

Thanks much!

 
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Old 03-03-2013, 06:56 AM   #2
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Re: Prepping for I-131. Questions!

First, Is there a reason why are you seeing an oncologist? In the US (if you are in another country I'm sure it's different), it's more usual, if possible to find a good endocrinologist that specializes in thyroid cancer. They are the specialists and "oncologists" and know more details and can follow up better in thyroid cancer specifically.

Are you using thyrogen? If so, you don't have to go off meds at all. You wouldn't be worrying about levels at all. Otherwise, I think I was over the 60 range before they agreed to do it without thyrogen.

It all is dose dependent. If you are getting a small dose (ie, 10mci), a day is fine, but if you are getting a high dose, like I did, 175mci, some states require you to be sequestered at the hospital, others let you go home, but the first three days you are "hot" and are like an xray machine.

Avoid children, pregnant women, animals, and don't stay within 6 feet of others for extended periods. I asked for a NUCLEAR SAFETY OFFICER at the hospital where I got my RAI treatment. I got full instructions.

 
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Old 03-03-2013, 08:28 AM   #3
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Re: Prepping for I-131. Questions!

Hi AuntNan,

I have had Thyrogen shots so I did not have to go Hypo. I went on Lid for 3 weeks and had my 150mci and went to my basement in Isolation for a week away from my husband, 2 kids and the cat and dog.

Hope this helps!

Smileyhappy

 
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Old 03-03-2013, 11:55 PM   #4
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Re: Prepping for I-131. Questions!

Hi Reece and smileyhappy. Thanks for responding. I am seeing an oncologist because that's where my endocrinologist referred me for the I-131. I'm from central PA. I had to travel a hundred miles to Pittsburgh to find a good surgeon. We only have two endocrinologists locally and neither are cancer specialists.

No, I am not on Thyrogen. I'm not even familiar with it. It was not presented as an option. What does it do? Being scheduled for March 12, I wonder if it's too late to ask for it?

My dose will be 100 mci. As far as precautions, I was told the basics about unused food disposal, flushing twice, showering 2 to 3 times a day, laundering clothes and bedding, etc. Nothing was mentioned about the things I touch over those days. Am I contaminating everything I touch? And, if so, how do I decontaminate things like the TV remote, cell phone, etc., that can't be washed?

I'm a little thrown by all this because I feel like the doctor is rushing things. He made a point of telling me that, once scheduled, there's no turning back because the dose is incredibly expensive and can't be stored for even a day. Yet he's not checking levels again until the morning of. So, if they're still too low at that point, it really doesn't matter because I'm already committed. He made it sound like it was no big deal... If the scans aren't good, we'll just do it again in six months. Yeah, right.

 
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Old 03-04-2013, 01:27 PM   #5
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Smile Re: Prepping for I-131. Questions!

Hi there,

Yeah I know it is crazy what you learn through all this. Thyrogen is a few shots Nuclear Medicine give you before you get the Rai capsule. What it does is that it covers your Synthroid meds so your body thinks you are not on Synthroid. Then you don't have to go hypo. It cost about 3 thousand dollars but in Canada I have coverage through Health insurance. It is sure worth it if you have coverage.

I was told not to worry about using my cel and laptop because we do not sweat much from our fingers. I only had to shower once a day and I had 150mci. I was living in my basement away from my husband, 2 kids (10 and 13 at the time) a cat and dog. I was allowed in the kitchen without any of them in it to make my food. All I used had to go into the dishwasher. My sheets only had to be washed when I was done my isolation. I put all my kleenex and paper towels in a garbage bag and put it in the back yard for a week before throwing out. Then it was not radio active. I did flush twice and I was the only one using the bathroom downstairs and cleaned it once at the end of the week. They told me that when I showered not to worry about cleaning it because I was washing everything off my body down the drain.

Oh yeah make sure that you have sour candies when you have rai done. And start sucking on them after 24 hours only. Your salivary glands can block and the sour candies will help to make you salivate. Make sure low iodine candies. Lemon wedges work too but not as nice to eat. Drink alot of water also.

If you have any other questions, I'm here. It is quite an experience to go through. But you will get through it!

Take care,

Smileyhappy

 
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Old 03-04-2013, 10:07 PM   #6
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Re: Prepping for I-131. Questions!

Thank you, Smileyhappy! You answered most of my questions and I feel a little better now. I was given very scant information and was really worried about not contaminating my home. I'm not a great housekeeper under the best of circumstances!

Good information on the Thyrogen. I'm most worried that my levels won't be high enough to cause adequate absorption of the I-131. If the Thyrogen can boost the levels, I wonder why my doctor didn't mention it. I think I will call him today and ask about it. Did you experience side effects from it?

How long did you have to stay on your low iodine diet after the I-131? I'm trying to read labels. But I fear I'm doing a poor job of eliminating the iodine. I find a food that contains no dairy or iodized salt and then discover that it contains some amount of soybean oil. And I was told to also avoid soy products. So very frustrating! Will be so glad when I'm on the other side of this.

Thanks again for your help.

AuntNanc

 
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Old 03-06-2013, 02:27 PM   #7
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Re: Prepping for I-131. Questions!

Quote:
Originally Posted by AuntNanc View Post
Thank you, Smileyhappy! You answered most of my questions and I feel a little better now. I was given very scant information and was really worried about not contaminating my home. I'm not a great housekeeper under the best of circumstances!

Good information on the Thyrogen. I'm most worried that my levels won't be high enough to cause adequate absorption of the I-131. If the Thyrogen can boost the levels, I wonder why my doctor didn't mention it. I think I will call him today and ask about it. Did you experience side effects from it?

How long did you have to stay on your low iodine diet after the I-131? I'm trying to read labels. But I fear I'm doing a poor job of eliminating the iodine. I find a food that contains no dairy or iodized salt and then discover that it contains some amount of soybean oil. And I was told to also avoid soy products. So very frustrating! Will be so glad when I'm on the other side of this.

Thanks again for your help.

AuntNanc

 
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Old 03-06-2013, 02:42 PM   #8
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Re: Prepping for I-131. Questions!

Hi there,

I was on the lid diet for 2 weeks then Rai then another week of Lid. Look on the Thyroid.ca site for lid diet it has alot of ideas. I found Lid salt at a health food store. I ate fruits but no strawberries. I had steak, chicken, riz and pasta with no egg yolk or salt. I was lucky because a local bakery made me bread with my Lid salt and no salt, no dairy margerine from Becel (green lid). I had jam but make sure you check all the ingredients. You would think I would loose weight but it comes back when you eat normal again. Pick something exciting to eat when you are off lid. Just don't overdo it because you will feel sick. I think I had St-Hubert chicken. I had no side effects of the Thyrogen. It's given so you don't have to go off your Synthroid. Then you don't have to go hypo at all. You feel better if you can go that route. Make sure that you have lots of things with you to do in isolation. Since we have kids we are always busy so this time is actually nice. Mommy time! Try to enjoy it!

Take care and I'm still here if you need more info.

 
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