Some Rights Reserved
This work is licensed under a
Creative Commons
Attribution-Noncommercial-No Derivative Works 3.0
United States License.
Life Redefined: Are We Becoming Weapons of Mass Destruction?
Throughout the past week or so, there has been an abundance of news stories on the dangers of radioactive iodine (RAI) to others. I want to talk about this because SO many of us have to take RAI and it seems we all are given different precautions to mind after given the treatment.
In 1997, the Nuclear Regulatory Commission omitted the requirement that patients receiving radioactive iodine be isolated in a hospital until their radiation levels are low enough that s/he will not cause harm to general public. Since this ruling, patients are released to their home for isolation.
I’ve taken the radioactive isotope I-131 four different times; two of these times were treatment doses of 150 millicuries and 100 millicuries. Here’s the perhaps startling information: regardless of whether I had taken 150 millicuries or 5 millicuries, the rules I was told to follow after leaving the nuclear medicine department did not change at all. I was never kept in the hospital for isolation, but was discharged with only my conscience keeping me isolated from the public. Oh, and a laundry list of rules to follow. One set of rules deals with the precaution that, and I quote from the rule sheet I was provided, “All bodily fluids will retain/excrete this material at high levels for approximately 3 days from discharge of the hospital.” In other words, I had to flush the toilet three times every time I went to the bathroom.
The next set of rules covered time and distance. Here’s what I was told regarding contact with others while I was still considered to be radioactive: “The less time spent with you during the 3 days following your discharge from the hospital, the less exposure loved ones or the general public will receive. A three feet ‘buffer zone’ between you and anyone else is a safe distance. Most important, keep a minimum of three feet distance from pregnant women and children under 16 years of age for 3 days after discharge from the hospital. Children at these ages are more susceptible to radiation exposure, so too much radiation can be potentially harmful. With every step back from someone, his or her radiation exposure decreases exponentially. The three-foot/3 day rule should be implemented for adults as well. You may continue with normal activities, however, be aware of your surroundings. Will there potentially be pregnant women or young children in close proximity to you? If so, it might be a good idea to just avoid going there.”
Sure, these are great guidelines, but there is NOTHING that keeps me from going to a crowded mall or airport or grocery store, etc. while I am radioactive. When I’m standing in line at a store, I now consider the fact that the person standing right next to me could quite possibly be radioactive. I don’t know about you, but I find that to be scary.
There have been reports recently of waste setting off radiation alarms in landfills. The source: radioactive iodine. I have to wonder, has my trash set off alarms at the landfill? Are the employees who handle trash from patients such as me being unknowingly succumbed to harmful levels of radiation? I take the radioactive iodine in efforts to better my own health, but I now consider the possibility that, while beneficial to me, it is detrimental to those around me.
What about patients who travel hundreds of miles away from their home to receive treatment? What are they supposed to do? Sure, they could drive back home, but many patients simply would not feel like driving a long distance. And with many insurance providers refusing to cover a hospital stay that is not viewed as necessary, many of these out-of-town patients check-in to hotels after taking the RAI. This seems like a good plan, but consider the workers at the hotel who have to clean the bathroom and change the sheets once the patient leaves. These employees are now being exposed to potentially harmful levels of radiation.
A patient recently set off radiation detectors in the Lincoln Tunnel when traveling on a bus from New York to New Jersey. How did this happen? This patient reportedly ignored the precaution to avoid public transportation for the first three days after receiving RAI. However, earlier this year, a patient in the UK set off radiation alarms when driving off a cross-Channel ferry. The source of the radiation was I-131. The startling thing: this man had received the RAI two weeks prior, yet he still triggered the alarms. I’ve always been assured by the workers in the nuclear medicine department in my hospital that I am safe to use public transportation after three days, yet they provide me with a document that I am supposed to carry with me for three months after receiving the RAI in case I set off radiation alarms. The purpose of this document is to prove that, in the case that I do set off the alarms, I am not a terrorist. Yes, having this document is a good thing, but I now wonder about the potential harm I am causing to those around me.
As a result of these incidences, representatives in multiple states are challenging the 1997 ruling of the Nuclear Regulatory Commission. It seems to me like this is a no-brainer decision: keep patients isolated in a hospital until safe to be in public. However, the Nuclear Regulatory Commission won’t easily overturn their decision for two reasons: 1) maintaining and staffing isolation units in a hospital is expensive, and 2) there is no concrete evidence indicating that radiation exposure from a patient who received RAI is harmful.
In my mind, the root of this issue is lack of awareness. Sure, who wants to participate in a study to see if being exposed to radiation from a patient who received RAI is in fact harmful? I’m not envisioning an abundance of people voluntarily enrolling in this one. But, what if people were more aware of these potential risks from secondhand radiation exposure? What if more people spoke up to the Nuclear Regulatory Commission? Could we make a difference? I think so, which is one of the many reasons why I value this community so much. Your words are making a difference, so keep sharing and speaking out. We will be heard.
What precautions did you have to follow after RAI? Were you isolated or were you free to go home? Do you think all patients receiving RAI should be admitted to the hospital for isolation?
xoxo,
Joanna
–
Radioactive Iodine in the news:
NY Times, AP News, Daily News – UK
Tags: Are We Becoming Weapons of Mass Destruction?, exposure to radiation, I-131, Life Redefined, Nuclear Regulatory Commission, Radioactive Iodine, RAI, thyroid cancer patients, thyroid cancer treatment, Written by Joanna Isbill
Follow Dear Thyroid on Twitter/@DearThyroid | See our Facebook Page | Become a Fan on Facebook | Join our Facebook Group
You Can Create a Dear Thyroid Profile and share with friends!
Reader Feedback
37 Responses to “Life Redefined: Are We Becoming Weapons of Mass Destruction?”
Leave a Reply to Joanna Isbill
Comments are moderated in an effort to control spam. If you have a previously approved Comment, this one should go right through. Thanks for your patience!
Joanna,
Thank you for addressing this topic. There has been quite a few news items lately, and I wonder how accurately they are portraying the story. I understand the need to save money by releasing patients with strict instructions, but at what cost? When I had the thyroid scan and uptake, the radiation amount was tiny, but the tech was very specific about what I should do and shouldn’t do after leaving. He even told me to call him if I decided to do any traveling in the next month or so. As for RAI, in my case, I wouldn’t be able to come home. We have a small house, close family including a highly dependent son, and way too many pets. I would be exposing my family repeatedly. It wouldn’t be right or fair to go to a hotel for the isolation period. So when my endo wishes I would chose RAI instead of medication to treat my Graves Disease, I don’t think she sees the whole picture. She does understand that it is my choice, and for now I choose meds.
I can understand, to some degree, that these recent news scares are causing upset to those who are involved. It is scary. But one comment I read said “my plants died after I came home from RAI”. Ick.
Amanda
You’re so right–there is a MUCH bigger picture that many health professionals either don’t see or don’t address. It’s not as easy as popping a pill and then heading home. If we don’t have an isolated bedroom AND our own bathroom to go home to, we’re putting our family members at risk.
when I had my uptake, I was givin a shot from a doctor, then went in for a pill. Was told to drink lots of water when I got home and then went in for readings to see if I was still active or not? Wasn’t really told about any danger, the paper work had little info on it. Thanks for writting this and yes you should be put into the hospital.
Lisa, you’re definitely not alone in receiving inadequate information! What do you think the issue is? Should there be a standard guideline that all hospitals follow? I personally think the guidelines should be much more standardized from state to state. So many hospitals/treatment centers seem to be too lax when it comes to RAI.
Interesting Read,
I had my I131 Capsule last August.
Living in South Africa, they are strict with the rules.
I had to spend 4 days in total isolation at a Hospital. Intresting that a “3rd world” country, has such explicit rules, and these same ones are fluanted elsewhere?
Hi Daniel, thanks so much for sharing your experience–it’s great to compare rules and regulations between different countries. I agree with you–very interesting that one country is so strict while another is quite relaxed. What’s the right answer here?
What is the right answer.
Look, I cannot remember my dosage, but I believe that it was fairly substantial, reason being, it was an ablation following surgery to Remove the Thyroid due to Cancer.
That said, surely there would be an international protocol in place.
While yes, I had total isolation, there was no mention of letters for travel, no need to double wash sheets when home, or triple flush the loo.
Sometimes, I am pretty sure, even our Doctors are treading in territory, that they’re not aware or 100% sure of.
Great point, Daniel. I agree that there is a lot our doctors just don’t know. And I think we can help our doctors find access to this information by continuing to raise awareness and speak out!
I was isolated. I took my pill 100millicuries on a Thursday, stayed in isolation till Monday and was released from hospital only after they measured if my radiation levels were ‘safe.’ I then had to take a shower in the hospital bathroom on the ward before going home and wear what my husband had brought from home. I had a special toilet which was-in my fantasy, but maybe I’m not so far off-disposed off as toxic, radiation waste… I had to leave everything I wore in the hospital to be destroyed-so old clothing&underwear-leave my contact lenses (luckily daylies), leave books and stuff. I got served food on throw away trays and plastic cutlery. I could take reading glasses which were to be disinfected before I could get them back. Everything in the isolation room was taped in plastic (phone, remote, handles) and there was a special plastic carpet on the floor. I had those special shoes to wear for when I went into my isolation bathroom. Visitors stayed in a small hallway area in front of the glass door of the room and we spoke via an intercom system. I made a drawing with as title ‘Isolation’. I glued the guidelines on it-they’re in Dutch …
http://painting2cancers.blogspot.com/2009/07/la-mirada-4-look-4-isolation.html
Another experience from another country! Thanks so much for sharing, Ria!! Like Daniel, your hospital has MUCH stricter guidelines. Is your hospital too cautious? Is mine not cautious enough? Is there a middle ground? Lots of questions with no answers…
Oh, and as always, your artwork is STUNNINGLY BEAUTIFUL! Thanks for sharing it with us!
Ria,
I just wanted to compliment you on your artwork. Amazing and inspiring. Thank you for sharing!
Amanda
When I had the uptake scan done I wasn’t given ANY instructions or precautions to follow. I know the scan uses a tiny dose compared to ablation or cancer treatment, but is it completely safe for others?
Like Amanda, I live in a tiny house with my husband and two or three kids, depending on the oldest one’s college schedule. I also have three cats and a dog, and the cats plop down on me whenever I’m sitting or sleeping. There’s no such thing as a spare bedroom, there’s no way to sit more than three feet away from everyone else while eating dinner or hanging out on the couch, much less while driving kids here and there. It’s a huge argument against having RAI.
Hi Graves Situation! When you were given the RAI, though you weren’t provided with any guidelines, did you have any idea that it could be potentially harmful to those around you?
You’re so right–this is something that has to be considered before administering RAI, and as patients, we need to have the opportunity to discuss all of this with a doctor, as well as the information needed to be able to have that discussion.
I was interviewed (by phone) before the RAI scan and was asked: Do you have small kids in the house? Do you have pets? Do you have a spare bedroom and an additional bathroom that you can use exclusively?
And since we don’t have kids, and I do have an extra room (my art studio) which has a bathroom, I was allowed to be isolated at home.
Yes, I was given very explicit instructions as to how far away I need to stay from anyone, and for how long. (Most of the radioactivity is gone through your urin after only two days).
I also got the flush 3x routine.
I personally felt the hospital dealt with the risks very responsively here in Oregon. (I think each state makes it own rules).
HD
Yes, the rules do vary from state to state. It seems as though the rules in Oregon are very similar to the rules in Georgia.
Before given the RAI, I was asked if I had access to my own bathroom, bedroom, etc. But here’s where the issue lies with me–what was keeping you and I from being around children, pregnant women, or other adults during that period when we were most radioactive? Nothing but our conscience. Do you find that to be a problem?
As always, thanks for chiming in!
Joanna,
Actually I was specifically told to stay away from infants and pregnant women.
They even told me that warning for the diagnostic scans (which has a much lower dose of radioactivity than the RAI itself).
Again, I felt I was well informed about the risks of the procedure.
HD
I’m so glad you felt well-informed as a patient. That’s always so important. Like you, I was advised to specifically avoid pregnant women and children. Here’s my question, though–what if there is a patient who either doesn’t understand the guidelines or who choses to ignore the guidelines? How do we make sure that patients who fall into one of these categories is not exposing others to harmful radiation? (I know that you are not one of those patients!)
As I said I was interviewed by the hospital, and they made sure I indeed understood the procedures and the importance of the safety precautions.
As to deliberately ignoring the instructions, I don’t think there is anything really that can be done. Cars are dangerous weapons too when misused. Or a person with AIDS purposefully infecting another human being. Prosecution is the only thing I can think about for those case.
If RAI treatment rules should be tightened or not, I do not know. In my case, I thought reasonable precautions were taken, and I much preferred to be sequestered in my own house, than in a lead-lined room at a hospital. – In other specific cases the public might be served better by forcing people to stay at the hospital.
My 2 cents,
HD
I ALWAYS value your two cents, HD, so thank you for sharing your opinion!
yrs there should be a standard guidelines for this issue, when my sister had her thyroid killed with radiation, she was told to stay away from people who had pacemakers, microwaves, and a few other things, that was back in the 70’s. With my up take I was givin alot of info, they even needed to give me another pill! So I didn’t know what I got in a dosage, was told don’t worry about it, that’s our job. So I didn’t ! Yes that’s how I found out that I had a thyroid problem, but come on don’t worry about it. Thinking back I was in my twenties and had kids and a busy life! Not smart but I trusted the medical professionals and just went home. Did not think about being radioactive at all, they said it was just a common test. My clue should have been the room they put me in and how the pills arrived, they didn’t touch the pills, they were in protective gear, even when they gave me the shot the day before! I’ve learned alot more since then! So yes when there are others you may come in contact with and it effects there well being I think we should be better informed. Even a cough or sneeze can effect others I was told much later. My form I sign for the procedure had some warnings but not enough! It was more on what I should look for in me, not in what this could do to others around me!
Lisa, you bring up a great point. All bodily fluids are rendered radioactive after taking the RAI, including any fluids we cough or sneeze. Should I sneeze or cough, how can I make sure my fluids stay within my three ft. buffer zone? There’s just no way!
I was instructed to sneeze or caugh into a tissue, and that was to be flushed down the toilet. (3x flush rule applies)
Also I was told that the vast majority (like 90+%) of the radioactive iodine goes out with the urine.
HD
Lots of flushing is involved with RAI, isn’t it?!
🙂
You are such a lampchop!!! *guzzle guzzle* Thanks for the rad! Blood sweat and tears baby. And the pee pee.
Awesome article!
xoxoxo
Muah!
Thanks, babes!! XOXO
I LOVE THIS ARTICLE – personally, and I’m very glad you wrote it. Flawlessly written and interesting.
That said… I take umbrage with the lack of education we as thyroid patients receive from our doctors. Though being called A weapon of mass destruction is offensive, to be sure. I see it a bit differently. Personally, speaking for myself, it’s a WAKE UP CALL to the medical community, that they aren’t doing their jobs. Additionally, I see it as a means of awareness. Think about it – If you saw an article with the title “Thyroid patients weapons of mass destruction” or something along those lines, regardless of whether you were a thyroid patient or not; YOU WOULD READ IT, yes?!
1. People will, I hope, read it and feel engaged enough to do a bit of research about the thyroid and/or thyroid cancer/disease.
2. The medical community nationwide will WAKE UP and realize that the lack of standardization of information being disseminated to patients receiving RAI isn’t affective.
I have taken RAI for Graves disease. The way in which it was given to me was so heinous and PLAIN STUPID, that I’m still shocked.
So… Those are my thoughts and feelings – MY OPINION – Agree, disagree.
As you were.
KLS
I agree, Katie. I think part of the issue is medical professionals not taking the issue seriously. I think another part is that, like Daniel suggested, some medical professionals simply DO NOT KNOW. Hence the need for awareness.
I had RAI in 1991 and was told it was completely safe. It was just an isotope. I don’t remember anything bad happening. I was not given any alternatives. My Graves’ Disease was rather advanced and just recently diagnosed. The RAI killed approximately 33% of my thyroid gland, enough to make it stable, apparently, since I have been on the same amount of thyroid replacement (I now use Armour only) since one year after the RAI.
Do I regret it? Probably. Was I given a choice? No. It was Kaiser in California. Los Angeles to be exact. I needed to feel better and now I do.
DeeJay, thanks so much for sharing your experience with us. Did you try medication prior to the RAI or was RAI the first treatment you were given? At the time, how did you feel about not being given the option of taking RAI or not?
I’m so glad that RAI was an effective treatment for you. Thank you again for sharing!
Joanna
just looking at all these comments on the site it seems that every one is told different my partner goes in for the rai end of november so hes new to this hosp not told us any of theses like flushing toilet 3 times it only what iv researched my self on here and may be in america ii is different i dont know as we are in england as thyroid cancer is very rare here we was told he has to stay in hosp 3 days then he is home but im worried now as to the out come when he gets home to others in house really scares me
Hi Michelle,
Don’t be afraid. You are doing the right thing by researching this. Everyone is told different things. It is good to read all you can, get questions together and make sure to ask them when he goes in for RAI or before that. And ask here! What has he been told that will need to be done for precautions? 3 days in the hospital is better than what I would get here… but as you said… everyone is told to do things differently. I knew you were in England. I believe we have a few here that are in that area, maybe they can offer insight.
Thank you for reading, and joining in. It really helps to understand more. It does get scary and overwhelming. I understand that.
Amanda
Michelle,
Yes, it does seem as though we are all given different instructions and precautions, which makes the whole thing very confusing. I’m so glad you’re researching this and asking questions–this is so important! I have never been hospitalized after taking RAI, so I can’t offer personal experience, but I will say I have talked to others who were required to stay in the hospital for isolation; they were not allowed to go home until they were safe to be in public. Often, a hospital employee will use a geiger counter to determine if the patient who received the RAI is giving off an unsafe level of radiation. If the levels are within the “safe” range the patient is allowed to leave. Again, I’m not speaking from personal experience on this, but that’s what I’ve found to be true from talking to others and from doing research online. Have you voiced your concerns to your partner’s doctor? Keep asking questions and sharing your concerns and frustrations–we’re here for you!
Joanna
I was told by my doctor’s office to go to a hotel after treatment with RAI. SAY WHAT??? I asked about exposure to other guests as well as staff and offered that I thought a hospital, where I could be isolated, would be best. The nurse practiotioner said “well you would be exposing nurses to radiation”. SAY WHAT, AGAIN?? I work for family law attorneys and I fully understand that an angry opposing party could walk into my office one day and shoot me in the head. It is my job choice and the risk (very low) that I take. I did stay in the hospital for (4) days and the nurses took every precaution, wore radiation detection devices telling them when to get the heck out of my room. They blocked off the room behind mine and posted radioactive bio-hazard signs all around me. Now why in the world would the hospital take so much precaution if RAI was so safe and not dangerous to those around?? The NRC needs to impose stricter guidlines and we need to take a hint from other countries which require a mandatory hospital stay. Thank you for writing this article. Awarness must be raised…
Jennifer, this is the PERFECT example of why we need stronger guidelines and more awareness! Thank you so much for sharing.
I got RAI three days ago and was doing research to see if it was safe to sleep with my husband tonight. My doctor said it was ok to be around people as long as I wasn’t. Sitting elbow to elbow with them for 12 hours straight. He really made me feel it was relatively safe and it was highly unlikely that I would be able to expose anyone to a harmful level. The card I received said 15.4. I don’t know if that’s my dose. I have a hyperactive thyroid nodule and they were trying to kill that part only. So now I’m paranoid that I have just exposed my family for the past three days and I may have caused them harm. Not to mention the fact that the doctor told me I was fine to go to work the night I received the pill. He said if I was a wrestler for a living then he said that wouldn’t be ok but otherwise I was fine! (I’m a police officer and sat in the car all night with someone two feet away for 6 hours)
I also had the I-123 4 days prior and was told there was no risk to anybody.
HyperHwyDog,
Thanks for commenting. The purpose of this article truly was not to make you feel paranoid. Rather, the purpose was to shine a light on the amount of awareness we need, even among medical professionals.
You followed your doctors orders. After my first treatment with RAI, I wouldn’t have even KNOWN that I should question my doctor or do more research.
You likely did have a much much lower dose of RAI than a thyroid cancer patient might receive for ablation. And remember–you followed your doctors orders.