[ewmb]

#1069774

Hi,
I had RAI about 10 weeks ago and I was told that I had to stay back from people etc. for only three days. Sounds like you’re possibly in Britain or somewhere else in Europe? I don’t know what the recommendations are there. I think it depends on how much i131 you are given. I had 15 millicuries. I would see if your country has a thyroid association that could give you an idea of the practice in your health system for RAI. From what I read before my procedure that would be excessive for a Graves patient. I don’t know about cancer patients as they can get much higher doses of radioactivity.

You’ve come to the right place. Someone here will be able to point you toward information. This board is really helpful.

Good luck,
ewmb

[Melrb1975]

#1019167

Hi – I’m so glad I found this forum!

I was diagnosed with Graves in 2006. I was treated with Carbimazole and Propranalol for the symptoms. Initially the dose of Carbimazole was 60mg daily. There were several attempts to reduce the dose from 2006-2007 however my thyroid quickly became overactive again. Over the course of the last year – 18months my dose has been successfuly reduced to 10mg daily. However I am told I cannot stay on this forever so need to have RAI. I chose not to have this earlier as I have 2 children aged 4 & 5 and have been told I will need to spend 1 month keeping at least 1 metre away from them, more at first. As my children need my help to dress, bathe etc let alone cuddles I don’t see how this is possible. Are there others in a similar situation? At the moment I am happy staying on Carbimazole, but I am aware of the potentially serious side effects.

[Shamrock]

#1069775

When I had my RAI I was told to stay away from adults for 5 days and children for 2 weeks. Infants, I think, even longer than that. They will certainly let you know. But, if you don’t want to wait til you see the, just call your doctor and he’ll give you the guidelines. Good luck!
shamrock

[Melrb1975]

#1069776

Yes – I’m in the UK. These are the guidelines the doctor gave me, and I asked him to check this was correct which he spent some considerable time doing. What I wondered was how other people given similar guidance have done and how they have coped as I have only spolen to one other parent who had RAI and she styed away from her children for one week then ignored the guidelines as she had no one else to help her. I would worry about taking this risk but want to balance this with the risk to my own health. Is staying on Carbimazole such a bad thing as long as I make sure I follow the guidance?

[Ski]

#1069777

Staying on the carbimazole should not be a problem, as long as you are not showing abnormal levels of liver enzymes or reduced levels of white blood cells. If you are successfully managed on a very low dose, the choice should be yours as to whether you remain on this course or proceed with some other form of treatment.

Some doctors see RAI as a "rational endpoint" for every Graves’ patient, and so they may tend to see ATDs as just a way to normalize your levels before you get to RAI. That’s NOT their choice to make. Speak frankly with your doctor and ask if they have some specific reason to take you off ATDs right now and proceed with some other form of treatment. Listen to the response and take it into consideration as you make your own choice about how to proceed. If the doctor gives you a particularly hard time about doing what you want vs. what they want, and they don’t have solid reasons that outweigh all other treatment considerations, I’d search out another practitioner to help you with your treatment.

Just to answer your question about RAI and distance afterwards, doctors’ opinions differ widely on this point. My kids were about that same age when I was treated (maybe a year or two older), and I was advised to stay at least six feet away from them for the first 48-72 hours, then to "minimize" close contact until the remaining RAI in my body was reduced to minimal levels. (I chose to have them stay with relatives for the first few days, because I couldn’t imagine keeping that 6-foot ruler between us.) The way you can calculate the time period after those first few days is to know first how much RAI you would receive, then what your uptake percentage was. For instance, just to make this easy for the example, let’s say you get 10 millicuries of RAI, and your uptake percentage was 80%. That means 8 millicuries (80% of the total dose) will remain in the thyroid, and 2 millicuries will be excreted from your body through the fluid waste systems (primarily urine, but also a tiny bit in sweat & saliva) in the first 48-72 hours. Of the 8 millicuries that remain, the half-life is 8 days, so after 8 days, there will be 4 millicuries left in your body. After 8 more days, there will be 2 millicuries remaining. After 8 more days, 1 millicurie remains, and after 8 more days, half of that, and so on. So during that whole period of time, the amount in your body lessens and any potential risk to young ones decreases along with it. It’s all in your thyroid at that point, so the concern is with bringing the children close to your neck. My doctor told me to consider time vs. distance. If you will be very close to someone for some reason, keep it short. If you anticipate being with someone for an extended period of time, keep your distance for the most part. If your kids are sitting at your feet and coloring in a book, it shouldn’t be a big problem. If you want to give them a cuddle, just don’t cuddle them up at your neck for a long time. It is possible to manage, and you shouldn’t have to be completely sequestered from your kids, but of course we all want to be as cautious as possible with our kids’ futures, so you’d need to make the decision for yourself. The issue with radiation is not that one super-long cuddle will result in harm tomorrow, but that radiation accumulates in the body over our lifetime, and naturally we want to keep that accumulation as low as possible, especially for the little ones, who’ve just begun this journey.

And finally, if you decide that you do not want to pursue continuing on ATDs, but also do not want to deal with RAI, surgery is always an option. I know many successful surgery patients.

I hope that helps! Let us know how things are going for you!

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