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Hello. I had radioactive iodine treatment for my Graves’ Disease in July 2004. I was told by the doctor to flush the toilet twice for every time I used it, wash my hands often (and not to share my hand towel), drink lots of water to help flush it out, refrain from having intercourse for 3 days, not to sit close to my 7 yr old step son, and it I had a baby that I wasn’t allowed to be close to it for 3 days. I was told that it depending on how much RAI that a person received as to the precautions to be taken. I didn’t have any problems with it all. I only took 1 day off of work… no problems at all.
After having the RAI, I went overactive, then underactive, then it stabalized for a couple of months..in January I was starting to feel all of the symptoms again, had blood work done.. my Graves’ Disease is back again! (apparently rare after RAI) SO, I’m just waiting to have more blood work taken next week to see what my specialist suggests next. I’ll be suggesting to him that enough is enough, maybe I didn’t have enough RAI, so let’s give it another try so I can get on with life without this foolish waste-of-time of a disease.I woke up this morning with a lump in thraot that I thought was something stuck in my throat. Then I realized that it may be related to graves. I tried to cough it up andd gag myself. I admit that I haven’t been compliant with my dr’s appointment and my medication. My question is could this be a new problem or an old problem? I’m having trouble talking and swallowing. What to do?
It sounds like you need to call your doctor today. I had the same feeling before I was diagnosed and my endo said that it was the goiter that caused that feeling. If you’re not taking your meds like you should, maybe it’s growing. Good luck!
Your nuclear medical doctor will give you a list of precautions to take with other people. The precautions are similar in nature to the ones taken by lab technicians who leave the room before turning on your xray machine. It is not a question of your dose of RAI being potentially damaging to another person as much as it is a question of preventing unnecessary exposure to radiation.
The most precautions are typically used in the first two or three days after RAI. Any RAI that did not get taken into thyroid cells is rapidly excreted from the body, primarily in urine, but also in saliva and sweat. So, you don’t want to share eating utensils, kisses, take bites from the same apple, etc. because theoretically “some” RAI could make its way into the other person’s body. Also, we are told to double flush the toilet after using it for the first couple of days, to flush any possible radiation out.
After the first two or three days, we simply must keep a bit of distance from others for a few days, and no holding of small pets or children up by our necks.
The amount of RAI in us, during this treatment period, is far greater than any exposure you could accidentally give to another person, especially if you are following the precautions. And RAI has never even been shown to create long-term health problems for US. So don’t make yourself crazy. Make adjustments in your life for a week; consider it a “vacation” if you can, and provide yourself with entertainment and leisure activities that will help you to relax. Recently, one wise poster here was asking for advice on comedy movies, etc. to help her during her post-RAI week. She had a lot of good ideas for how to pamper herself after RAI. You might want to seek out the post and the responses she got.
I hope this helps. You might want to take someone with you for your consultation with the nuclear med doctor, to take notes. It can be hard to remember everything when you are nervous and stressed.
I hope you are feeling better soon.
Bobbi — NGDF Online FacilitatorAlready have another question
. I’m full of them but this gets a little overwhelming so I will ask one and then sit on that for a while. I was recently on a website that said ABSOLUTELY NOT to have the RAI done. I honestly trust my endo but this was a little alarming. I chose this instead of the medication but am now second guessing myself and my physicians. I was already informed that I would have to be away from my kids and husband for 3 to 5 days. But I was also told it was really 3 to 5 weeks. I cannot be away from my kids and husband that long, but I also know I need do stop second guessing myself. Has anyone had the RAI131 done? If so, do you regret it? What is really going on with this and I would love to hear from others that have already done this or are thinking about it.Thanks
KimHi Kim,
I see you have found one of the “DO NOT TAKE RAI” sites. Honestly? There are three proven treatments that work for Graves’ disease.
1. Antithyroid medications. They work by blocking the absorption or the producing of the thyroid hormone. Depending on which one you take. This allows your body to return to a more normal state and then your doctor may back you off at six months to see if your levels go back up. There is roughly a 20% chance of remission. Long term remission is even less.
2. Thyroidectomy. The surgical removal of the thyroid. If you opt for this make sure the surgeon uses nerve impulse sensors. That tells the surgeon when s/he is getting too close to the vocal cord nerves and they can then stop. It is surgery and with surgery there is always a risk. But thyroidectomy is a good choice if you are considering pregnancy. With RAI you will need to wait a year to conceive.
3. Radioactive Iodine, RAI. RAI has been used to treat Graves’ disease for over 50 years now. We are now entering the third generation of children born to people who had RAI in the 50s. There is NO PROVEN link to any genetic issues or problems related to RAI given in the doses we receive for our Graves’ Disease Treatment.Unfortunately there is no lack of people who will yell from the roof tops that they had RAI and their life is horrible. Problem is about ten percent of people with Graves’ disease will have a hard time with their Graves’ for many years no matter what option they choose to treat their thyroid.
I had RAI and was one of the ten percent who had problems regulating my thyroid levels. It was not due to the RAI but to the fact that I had a fairly low dose (12 milicuries) and my thyroid was slow in dying off. While it was dying off it was still able to pump out hormone making my levels hard to adjust.
The National Graves’ Disease Foundation goes to all the Endocrine Society meetings. We have a booth at them and sit in on the presentations. We have not yet, ever, seen a study that shows RAI to be dangerous, causing increases in cancer beyond the general public, or any long term effects. There have been a darth of papers submitted to show that it is dangerous, but the papers have not passed medical review boards to show they were accurate or conducted correctly.
The average dose of RAI is 10 to 16 milicuries. That is a very small dose. People with thyroid cancer receive doses in the hundreds of milicuries. You will not need to stay away from your family for five weeks. The dose we receive recommends staying about five feet away for three days or so. Excess radiation is excreted in the urine and sweat, so they recommend flushing the toilet at least three times after use. Sleeping on a clean sheet and then washing it each day and eating on paper plates and using plastic ware.
Do not let scare tactics sway you from any of your treatment options. All are viable and well proven. What you will find on our site is accurate information, backed up by sound medical research and nothing else.
We are only a click away.
Jake George
On-line Facilitator
Co-author “Graves’ Disease In Our Own WordsTHANKS Jake! for answering my question. I only chose RAI because of the success rate and wanting a better chance at only going thru this once. I am going to go thru the RAI after I see my Opthamologist. She would like to make sure that there isn’t the start of TEDs since I have chose RAI. has something to do with permanent damage to the eyes if I choose RAI with TEDs (saw it also on this site somewhere but have since gotten lost trying to find it again). I am also starting to have red eyes ALL the time, aching behind them etc. Might just be stress (the cause of all this for me) and then again, might be onset of TEDs. Better to be safe than sorry.
I noticed that NGDF used to hold conferences/get togethers but it doesn’t seem like they have since 2005. Will NGDF ever have one againg? I thought, “WOW, finally something I can go to and learn and actually associate with others going through the same thing!”
Again, thank you for reassuring no choice is wrong. I only had two choices, RAI or anti-thyroid meds. My endo doesn’t do thyroidectomies anymore unless its 100% necessary and is harming the patient if he doesnt.
Kim
It is wise to have a course of oral steroids with the RAI to lessen the chance of temporary worsening of Thyroid Eye Disease, TED. If you have RAI without steroids there is about a 15 to 20% chance of a temporary worsening of the TED. If you have the steroid with it then chance falls to what it is for the average Graves’ patient.
This year we are having the conference in Cincinnati Ohio in October. We are working on the final details and will be start promoting it next week on this site as well as our home page.
Just a note by the way. You said your endo does not do thyroidectomy anymore. They can only refer to a surgeon, they do not do the surgery. In the hands of a qualified surgeon the risk in minimal.
We are only a click away.
Jake George
On-line FacilitatorLet me give you a bit of technical background to the RAI issue — especially the rationale behind staying away from kids for 3 days or so.
All radioactive substances have a half-life measurement: how long it takes for half of it to be gone. The half-life of I131, which is the treatment form of our RAI, is 8.1 DAYS. That means that after 8.1 days, only half of what made it into your thyroid is left in your thyroid. Technically, scientists consider a radioactive substance “gone” after 5 or 6 half-lives (which would mean 40 to 48 DAYS with respect to I131).
Typically, we are given an uptake exam to determine how much of the RAI would most likely make its way into our thyroid in 24 hours. In my case, for example, I had an uptake of 65%. That means that 65% of the 8 millicuries that I was given of the treatment RAI (or about 5 millicuries) made it into my thyroid in the first 24 hours. RAI is very soluble in water, so any of the RAI that missed being taken into my thyroid was eliminated from my body via urine, sweat and saliva during the first 2 or 3 days. The rest (the 65%) stayed in my thyroid and began to deteriorate, destroying thyroid cells in the process.
We are advised not to be around small children or animals for a while to prevent them from being exposed to unnecessary radiation. Typically, we hold small children or animals up near our thyroid. During the first 3-5 days, when we are excreting excess RAI we are advised to exercise the most caution. But staying away from people for 3-5 weeks is a distinctly over-wrought recommendation, based on a lack of understanding.
I hope this more technical info helps you to feel a bit easier about the treatment you have chosen.
Bobbi — NGDF Online FAcilitator
Kim,
I had the RAI a month ago. I work in a nuclear plant and since I set off all the alarms going out, I had the dose levels of radiation in me measured a couple of times. Most of the techs told me that I could not hurt anyone (I have young grandchildren that I have with me a lot). Because my levels were so high, one advised me not to be around them for another week after the 5 day restriction or to hold them for a couple of hours at a time on my lap. But, he did say that if I was around them it wouldn’t hurt them. I had a high dose of I-131 and it will take another 1-2 months for me to clear radiation monitors, but I have been at work since 5 days after RAI. Because we are so sensitive to radiation and keeping dose low, they wouldn’t have let me back in work if I could hurt anyone. I understand your fears. We are also more anxious and panicky when hyper. I have had my grandchildren back around me on a regular basis since 2 weeks post RAI.
Take care
Thanks Mammaw and Bobbie for your input. AT this point, in decision making, I would pretty much believe anything. I know I only want to go through this once and what is detering me away from the ATDs is the fact it comes back. Considering I’m a “high-strung” person and work in the engineering field, life is demanding and things set me off. I want to feel normal again and I know I wont be around my kids for a few days, but I also know the downside if I would be around them. I do have a question. My parents (in their early 60’s) said I could stay with them. They figured they aren’t having any more kids it would be alright. It this true? Could it damage something else with them? I would cuddle them (lol) like I would my kids.
Kim
Again, thanks for all the info and different views here. -
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