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I'm the first to admit that there are a lot of sites that talk about RAI (Radioactive Iodine Ablation, used to destroy thyroid gland tissue), it's benefits and it's potential consequences. I'm not going to try to do any of them better by coming up with yet another fact concerning the procedure.

I just thought that it would be nice to come up with some of the things that it would be wise to keep in mind/consider before choosing RAI as the appropriate treatment for your circumstance.

I, for one, believe that it much easier to make the correct decision when you have as much info as possible.

This is based on my personal experience after having had RAI nearly 20 years ago. Some of the details may be different from what your doctor tells you today. Don't ignore his advice, this is a serious undertaking, but some of the things that I found out may make it a bit easier for you.

Remember, I'm not a doc or anything. I'm just a person that had to have RAI to save my life and hope to make it a bit easier for others.

Topper (Linda)
aka ThyroGeek

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RAI Should NOT be your first choice,
or only choice

 I put this here, before you read any more so that you will be aware that RAI is not the best choice in all situations, in fact, for many it is a last resort and the other options should be seriously considered FIRST. 

Once you have had RAI, there is no going back, like surgical removal it is permanent and can not be reversed.

Consider your options carefully, choose wisely.

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What is RAI?

Nope, not the scientific definition, just the basics...

Radioactive Iodine. 

Iodine is absorbed by our thyroid glands as part of their normal function. The radioactive iodine is absorbed that same way BUT the radiation is there to kill all, or part, of the gland to reduce the output. There are a number of reason for the need to destroy a gland, I'm not going to get into that part... but the thing I do want to mention is that the excess radioactive material is then circulating throughout your body as part of it's normal process and released by the body.. that's the part I want to get in to. To help you understand a bit about that process and how to prepare for it. 

Okay, here goes, my thoughts, experiences and research....  

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It makes things a lot easier to have this stuff prepared in advance of your procedure. It will decrease the amount of stress and just make it a whole lot easier for everyone involved, you, your family, your pets, etc.

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For several days you will be breathing, perspiring, urinating and moving your bowels, perhaps even shedding a tear or two. All of these things will contain small amounts of radiation that is passing from your body. Because of this you must take some precautions to minimize contamination of your surroundings and other living beings.

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I know, it sounds scary.
But with a little preparation you can really minimize a lot of this.

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You will need to separate yourself from other people and your pets for at least three days, some doctors are now recommending longer. You will have to stay away from children and infants for at least five days, some doctors are now recommending longer. With that in mind you will have to make arrangements to stay away from your family and friends (or have them stay away from you) during this 'quarantine' period.

If you live alone this is much easier to accomplish than if you are living with others. You will have to choose the best way to accomplish this MOST important first concern. 

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All clothing and bedding that you will be using during this period of time will have to be laundered separately from everyone else's and be changed daily. It will be contaminated with your perspiration and body oils. 

The easiest way to do this is to set aside the clothing and bed linen, oh, and don't forget towels and wash cloths, that you will be using so that it will be easily accessible and have hamper or basket available to put the used items in. You can then wash it all together, without it contaminating other items in your home.

To protect your bed you have a few options. I was sleeping on an airbed so I just washed it off to clean it. For a conventional mattress I think I would invest in an extra mattress pad or two and change them daily, with the sheets.

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There are some things in the bathroom that would be best disposed of after this period of time, such as toothbrush, toothpaste, toilet paper roll, soap and any other items that are in direct contact with your body fluids. Know this ahead of time and setting up to do so will be a lot less stress, I think. 

Your doctor will give you special instructions for cleaning the bathroom after showering and using the toilet. 

Since the greater percentage of folks dealing with thyroid problems tends to be women I would like to add that it would be best to try to schedule things so that you are not going to be having your period during this time. It will make things a lot easier for you to not have the additional cleanup. 

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As far as meals go. If you can set up your meals and freeze them in disposable containers before your procedure, so that all you have to do is set them in the microwave to heat, eat your meal and then throw away the container it would save you a bunch of bother and work in the kitchen.  Pick up some disposable tableware too, so that you can just toss it and not have to clean it.

Sounds silly. But if you are faced with all kinds of hassle for the cleanup every time you eat, you may start skipping meals and that isn't good for you... the more your body expels (sorry for being graphic, but understanding how this works makes it a whole lot easier to deal with, I think) the faster you will get the excess radiation out of your body. So lots of food and water and showers to get rid of it as quickly as possible.

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Now.. what to do while you're in quarantine. Read, watch TV, whatever you choose to do make sure that you keep in mind that it has to be cleaned. My choice was to watch TV and movies. I put my remote control in a plastic bag, pressing the buttons through the plastic, so I didn't have to clean it..  When I answered the phone I held it with a paper towel and made the calls brief, remember, the breath you exhale is also contaminated.

A gal in our group asked about her keyboard and mouse, I have two thoughts there, in a plastic bag.. or go pick up a really cheap keyboard and mouse that you can throw away after. I wasn't into the internet way back then, so I just stayed off my computer for a while.

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Reproduction. I have some thoughts with this, some based on what I've read, some based on common sense and my opinion. Consider what makes the most sense to you and act accordingly. A lot of this has to do with what you feel is right for you, and only you can make that decision.

They suggest that you don't get pregnant after RAI for at least six months. Better, a year. My opinion... Give you and your baby the best chance for health and happiness.. wait at least a year.

Breast feeding. I've not seen anything about this at all. My gut says don't after RAI.... maybe on down the road.. if you wait a year to get pregnant.. then another 9 months to give birth... but it would be an individual decision. I have nothing to base that on.. just a gut feeling thing. You will have to be your own guide in this.

For guys... sperm is replenished every 30 days.. something like that... but I'd still wait, babies only get one shot at life... give them the best chance that you can.

Yeah, guys can have thyroid problems too, but the percentage is much less than women.

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I hope my suggestions have been helpful. For some of us the only choice is RAI. When I had mine I didn't have time to do any research or ask any questions. But I sure learned fast what I WISH I had done ahead of time.

Because of this lack of knowledge, when I started coming down with flu-like symptoms the day after treatment, I crawled in bed to sweat it out, like I had all my life.... I recontaminated myself doing that. Ended up getting a bad respiratory infection a few weeks later. I was told that my symptoms were just coincidental and not a direct result of the RAI. I've not heard of anyone else having the same problems after their treatment. Within a week or so of taking that pill I also came down with a case of strep throat that caused my tonsils to swell so badly that I had difficulty breathing. No one would answer my questions, but I have a feeling that it had something to do with my over exposure to the radiation from crawling into bed for two days and not cleaning up or changing as often as I should have.

It's not the greatest thing to go through, to be sure, but if the alternative is death, sometimes you just have to do what you have to do.

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 Due to some very bad judgment by the first doctor I had seen (whole long story, for another section of the site) I was a year into thyroid storm when I was finally diagnosed by a different doctor. My symptoms were so extreme they literally scooted me off to the hospital the same afternoon.

How extreme? 160 beats per minute for a resting heart rate, well over 200 if I so much as moved. Caloric intake was running between 25 and 30 thousand calories per day and I was still losing weight. I stopped sleeping because I had to stay up to eat. My hearing was so sensitive I was going insane. 

My mind NEVER shut off. I did a lot of 'inventing' that year! hehehehe

No.. it's not funny. It was an incredibly scary time. But if I don't try to look at the lighter side, I'll remember the scary times. As miserable as being hypothyroid can be, as bad as being hyperthyroid can be... nothing compares to a thyroid storm. Your body literally eats itself if you can't get enough nutritious food into it. It will do what it can to stay alive, including eating itself. The fat is taken first (sounds good, right?) After that is gone it starts breaking down muscle, organs and bone. Some of that damage can never be repaired.

Am I trying to scare you into RAI to stop or slow hyperthyroidism, or thyroid storm, or the ebb and flow of Hashimoto's ?? No... far from it. I want you to be aware of the consequences of not taking care of yourself. If you KNOW in your very being that something is wrong and the doc says it's 'all in your head' or 'you need to lose weight' or 'don't worry about it, you're in normal range'  Don't just walk away, like I did. Go to another doc, run your own tests through a facility such as Health Check USA. You can read a bit more about it on my page about Self Medicating, about half way down the page.

June, 2005

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