Radioactive Iodine Treatment Questions

Okay blog readers…I need some help.

On Sunday I went off thyroid meds I was on….then on the 13th I start my low iodine diet.

From there on April 20th I talk to the nuclear physicist and have a scan done…then the 21st is the day I take the Radio Active Iodine(RAI) pill.

The physicist is the person who will give me the cans and can-nots of treatment.   I don’t see them until the day before I take the RAI dose.  I have a huge host of questions that I’d like some idea about before then.  For example:

I have to launder my clothes separately…so can I touch fabric and sew..or will the radio active stuff get on the quilt pieces through my fingers…or can I sew if I wear rubber gloves?  Or could I work on just one quilt and launder it when I’m done?

In light of that, if I can’t sew, can I use the quilt machine?

I keep trying to think of what I can do if I can’t quilt….Gardening likely isn’t the best idea.  Won’t I infect the veggies or plants?

Paper piecing isn’t the best idea…or rug making as that will likely sit on my lap and get even more infected than just by the touch of my hands.

I am also curious, does the RAI make me tired or sick feeling…or will I just be dealing with the tiredness from lack of thyroid meds.  The tiredness has been daily getting a little worse….Not horrible, but worse.

I am a planner and just like to know.  I’ve gotten a general guideline from the docs but it’s so contradictory.

I can have sex within 24 hours of taking the meds but I can’t drink out of the same cup for five days….(read that again-I’ve read it dozens of times.  It doesn’t make sense to me.) Isn’t that weird??  No to cup sharing but yes to sex.

On the pamphlet I got it says I need to stay away from kids for a week.  Then I asked-double checking so I could let my families know how many days they need alternate care and found out -no, they want me away from kids for 16 days.  I am so confused.

I know that I’ll get these answers on the 20th but I’d really like to know a few things now so I can plan.  I’ve looked and googled it and I get all sorts of contradicting information there too.  I’ve said before that I’m a girl that likes a plan and feels frustrated when I don’t have a plan….I am comfortable and okay with the cancer and having the treatment-even thankful that I don’t have to tackle chemo or radiation.  I am just curious and wondering about the treatment.

I know several of you have been through this before.  Can you help by sharing what you were told?  Do you think I can sew?  Will the RAI treatment make me feel sick and tired?

25 thoughts on “Radioactive Iodine Treatment Questions”

  1. I think you should call the doctor and ask, you have very valid questions. His nurse may be able to answer your questions as well.

  2. My husband had internal radiation inserted in him before his bone marrow transplant. We have 2 cats. So not only did we NOT have the grandchildren come over—we also kept him away from our cats. It’s hard to tell cats what to do—-so we just put them in the basement for 2 weeks. Our basement is finished, and their sandbox is already there. But we also put their food and water in the basement and shut the door that leads upstairs. They were totally comfortable—but a little confused.

    The doctors told me to sleep in a different room so that we were not right next to each other in bed for 8 hours. We did not use the same bathroom—and he flushed everything twice because his urine was radioactive. He ate off of paper plates and used disposable paper cups and plastic cutlery—and I just threw them away after each meal.

    I did not sit next to him on the couch to watch TV. They told me to keep 10-12 feet away from him if possible.

    Once he entered the hospital for his actual bone marrow transplant, I washed his bedding 3 times. I even washed his pillows. I threw away his toothbrush.

    You won’t be holding small pieces of fabric for extended periods of time as you piece quilt blocks. So I kind of think that piecing quilts may be okay.

    He felt kind of crummy and tired—but there was so much going on medically that it’s hard to tell if it was because of the internal radiation or just the effects of chemo. He watched a lot of TV while he was radioactive.

    Because my husband’s radiation was a prelude to a bone marrow transplant, it’s possible that his radiation was a little stronger—-and maybe you won’t have to be quite as isolated as he had to be. But I know that you have a dog—so check and see what the doctors say about your dog’s exposure to you.

  3. I have to wonder….just how much radiation could be in one little pill? I’m weird that way, thinking all this caution might be a little over done. I would imagine you should stay away from small children because they might be more susceptible to the small amount of radiation, but also because the radiation might affect your immune system and little kids are germ factories.

  4. Call the doctor’s office and tell them you have questions you need answered in order to prepare for your treatment/recovery time. Mention how helpful it will be in complying with the guidelines if you know what they are so yo ucan prepare. Also, understand that you may get some slightly different info once they see you, decide on the dose, etc., but at least you’ll have a baseline. I have to say, it would be making me a bit nuts too. Hope you get some answers, and as many as possible are what you’re hoping for.

  5. Gosh, I had my radioactive iodine treatment 25 years ago. My daughter was still in diapers and I wasn’t allowed to change her, can’t remember for how long or how long I had to sleep in a separate bedroom. Don’t remember anything about separate laundry or dishes.
    But hopefully they have learned a lot since then!

  6. My daughter had cranial radiation as part of leukemia treatment. We weren’t told to do anything special.

  7. Sherry Whalen

    I would definitely call and email your clinic/doctor. I think they all patient care advocates that can do some of the foot work for you. In your email you can be very specific with the questions and examples, the phone call can alert them to the urgency of your email, especially since you need guidance for your childcare families. My dad had colon cancer surgery today at Mayo and he has had great PCAs all thru his chemo/radiation/surgery who would take the questions he had and either know the answers or find answers.

  8. I would call the doctors office…even just to talk to a nurse. I was always surprised to find in my treatment days how much my nurse could tell me without having to even talk to the doctor. Most of the time (and I know your nurse daughters), nurses understand that you have questions and are usually patient and kind to hear all your concerns. Especially with child care. Your families need to know so they can make plans. The nurse should understand that unless she is one of those rare nurses who should never have gone into the field to begin with. Praying for you!

  9. So why are you asking us who have no knowlege of what you are going through for advise ??? And even if we do know what is happening with you, it may have not been the same with “us”. Please ask your Dr these questions—and as for searcrhing the internet for answers, you’ve got to be kidding–ASK YOUR DR

  10. Here is what I did. My husband drove me home and l stayed in our bedroom while he slept in my sewing room. I sewed while he was at work, had my own bathroom and showered twice a day. I did not come near him for 5 days. My utensils went into the dish washer and I did wear disposalable gloves for the first few days if I was going to touch any thing some one else would touch. My daughter wore disposalable gloves when she picked up my dishes outside my bedroom door. I washed all of the linens and clothes I came in to contact with. After that, we slept in the same bed. For adults, this amount of radiation is not a huge deal. You will be getting the treatment and you should have very little side effects ( l got nauseous the first two days.). You just don’t want other adults picking up the radio active iodine since they still have a thyroid. As for kids , I kept my distance for 2 weeks.

    I made a quilt top during this time. My daughter talked me into getting a kit with all of the pieces cut out. That was a life saver because I had trouble thinking and I tired easily from being off of my thyroid hormone for so long. I then let the top set for six months so the radioactive iodine could decay. ( The information I was given said this could be done for items that could not be cleaned.). I then finished It, washed it and gave it to my sister- in -law and brother. Interesting side note, she is from the Philippines and had never heard of quilting. She was over the moon that I had hand made “such a beautiful blanket” for them. No one has ever gotten that excited over any handmade gift I have given them.

    Good luck and have plain food in the house for after the treatment. I like boxed Mac and cheese.

  11. I also had thyroid cancer, plus I had radiation every day for a month, after which I had this exact treatment but mine was done in the hospital. I was completely isolated for a week and my meals where served on paper plates with disposable utensils. The doctor and nurses made sure they were a yard stick away from me for the entire time. I was told when I came home to keep my distance from others for another couple of weeks but to otherwise go on as per usual with my activities around home. I ate very bland food in the hospital, mostly chicken breast and rice, with a bit of veggies, my saving grace was that I took some cleaned veggies and fruit in with me to supplement the meals. Other than being extremely bored in an iron coated room with just a TV for company, I felt no other repercussions from the treatment. No lasting effects either, so good luck with it all, I’m sure you’ll do just fine and spend the time piecing one or more of those many quilts you like to do.

  12. I also had thyroid cancer, plus I had radiation every day for a month, after which I had this exact treatment but mine was done in the hospital. I was completely isolated for a week and my meals where served on paper plates with disposable utensils. The doctor and nurses made sure they were a yard stick away from me for the entire time. I was told when I came home to keep my distance from others for another couple of weeks but to otherwise go on as per usual with my activities around home. I ate very bland food in the hospital, mostly chicken breast and rice, with a bit of veggies, my saving grace was that I took some cleaned veggies and fruit in with me to supplement the meals. Other than being extremely bored in an iron coated room with just a TV for company, I felt no other repercussions from the treatment. No lasting effects either, so good luck with it all, I’m sure you’ll do just fine and spend the time piecing one or more of those many quilts you like to do.

  13. This is for Dorothy above. What an ugly comment.. All, that was asked was what to expect from folks who’d been thru it.
    That advice will be invaluable.
    So Dorothy, you owe Jo an apology for being given a Mean Girl.

  14. MrsB you are right about Dorothy’s comment. I do think that the best thing for Jo to do is to call her doctor’s office for a few more detailed instructions from them. Everybody is different and even though I have not been thru this, I am sure that treatments vary widely based on the patient. I would ask the office for the worst case scenario especially on how much time to be away from the daycare kids. The parents could plan and Jo might even get a couple of extra days to rest and get her energy back!

  15. I have nothing to help you, but KNOW that I am PRAYING for you. I hope you can create a plan, as I know that will help you to stop worrying. The only way out is through, so take a deep breath, and bravely move forward, knowing that you are LOVED.

  16. Hi Jo,
    I have been following your journey with thyroid cancer. I had the same thing in 2000. I had half my thyroid removed and then we moved to another state. I found another doctor who said he would have removed all of it, but instead of more surgery, he decided to shrink it with radio active iodine. When I had the RAI, i came home and slept for the rest of the day……I never knew if it was just that I had been so anxious leading up to it, that I was just so exhausted, or if it actually made me tired. Anyway, my husband slept upstairs the first night and then left on a business trip for a month. The dr. had said to be away from people for a few days but that’s it. I didn’t really do anything special. After a few days, I washed my sheets and then just stayed home and sewed. It was actually kind of nice. I didn’t feel sick. I wasn’t any more or less hungry. After the first two days, I slept normally and that was that. They really didn’t tell me to hibernate, but i was in a new state and didn’t know anyone anyway so it was no big deal. I wish you the best and hope you don’t get too worked up about it ahead of time.
    I have had a couple of body scans over the years to make sure there aren’t any residual cells floating around, but basically all is well. Thinking of you.

  17. Those are all good questions! As a nurse I would urge you to write them down and call your Dr’s office. You will be doggie brained BC of the lack of thyroid, and if you write them down, you can also write down the answers… (BC you wil be foggie brained).
    Most Dr’s have either a nurse, Nurse practictioner, Physicians Assistant who can answer your questions.
    If they have electronic medical records, you could even email the questions to your Dr.

    Like I said I’m a nurse, but I don’t work now, and never in that area… But I always appreciated talking to a pt, who had a list of questions.

  18. Sharon Hughson

    Jo, I feel as if I know you personally with this blog and quilting. I’m a psychologist. I think you might contact the Dr. giving you the pill even ahead of time. Tell them at the office of your day care and ask if you can get some answers to your questions. I don’t get why they are not telling your what you need to know. Irresponsible, if you ask me.
    Yours in quilting.

  19. I have wanted to write for some time. I follow your blog daily and I am always amazed when people comment negatively about your blog, good grief. I am a 2 time cancer survivor, thyroid cancer in 1991. 23 years later I have had to see my daughter go through the surgery and the treatment. My daughter is like you Jo, she asks questions and does research, she is a planner and has to be with work. In order to schedule everything in a good way. 1st of all we are living in good times, this is very treatable. Time consuming and inconvenient to say the least. When I went through treatment, I was hospitalized in an isolated room. I didn’t have the special diet that you and my daughter have had to follow .My daughter starts her 2nd set of treatment this April 11. It doesn’t sound near as restrictive as the 1st time around. One thing I haven’t seen mentioned is the fact that you will feel very cold. I made her 2 extra warm quilts to wrap up in. Jo you are so good at putting your feelings into words. That was very hard for me. Your post about saying cancer the 1st time and then each time it got a little easier. And your post about not knowing what to say to someone with a new diagnose, just knowing that others care is priceless. And so I pray for you and your family, and for the doctors to have the knowledge to treat you and your situation as an individual. You have every right to know what to expect, I have always felt my biggest fear is the fear of the unknown. I am always amazed at your energy level, and that may change for a little while. Just hold your head up high and be the best at being you. Quilting is such great therapy for many reasons, it fulfills our need to give.

  20. I have been following your blog for not quite two years and I follow it because you quilt and sew but you also talk about life. Now and then when you mention projects done with your child care kids I recall my teaching days and those were good memories. Your cancer, your daughter’s pregnancy, etc. are all part of life so I applaud you for talking about it and especially the things which may bit have been discussed several years ago. So keep believing real and inquisitive, it will keep you young!

  21. Jo- If you signed up for MyCare – you can use that to send an email to your doctor. Sometimes the nurse answers for the doctor, but you should still get some answers. I’d go for email over a telephone conversation, because it is so easy to forget what is said. Better to have it in writing.

  22. When I had my radioactive iodine, the Dr. gave it to me at the hospital & then personally escorted me out the door of the hospital because he said they couldn’t take a chance of me going into one of the restrooms or stopping any where else in the hospital that they would have to shut down & totally decontaminate. I never did get terribly tired even though I didn’t have any thyroid medication from the time I had my thyroid out in the middle of August to when I had my treatment in Oct. The main thing with me was that I was terribly cold & couldn’t get warmed up for anything. Also, I was nauseated. I have a very sensitive stomach & keep Nausene on hand anyway, so that helped. I had my treatment on a Wed. & was able to go back to work the next Monday, but was told to still stay away from close contact with children. I slept in a separate room from my husband & ate my meals that he prepared in a separate room for 5 days. I mainly sewed during that time, but never thought about the fabric being contaminated. I pray that the time passes quickly for you & uneventfully. I looked at it as bonus days to sew without feeling guilty that I normally wouldn’t have.

  23. Tammie Stephens

    I took RAI Feb 10, 2016 and had NO side effects (I have Graves and they are trying to stop the Hyperthyroid symptoms). As my Dr stated after taking the pill, “It’s kinda anti-climatic.” I have to agree. Here are my thoughts and highlights. The Dr told me to bring lemon drop candy (just cheap ones) to suck on after the pill so I didn’t get a possible metallic taste in my mouth. I sucked a whole bag down and no metallic taste. LOL. He said stay away from everyone (quarantine) for 3 days. Put my bed sheets and any clothes in the corner of the quarantined room for one week. Do not wash until after the week so the washer is not contaminated. (They call it a half-life and every 8 days the RAI dies by half… So 100% and then 8 days – 50% and then 8 more days it’s down to 25% and on and on.) Also the first 2 days Doc said to drink lots and lots of liquid so you pee a lot. He said you want the Radiation going thru your body as quick as possible and not “sitting” around in any one organ (kidneys, liver, etc). Also wash your hands a lot and take a couple showers a day along with washing your hair each time. The goal is to flush the RAI out and off your body because the Dr says it goes all over and not just to the thyroid. The thyroid will hold it but you want it out of all the other parts as quick as possible. That’s one reason he said don’t wear rubber gloves because you are letting it build up. He told me I could knit but I would have to leave the knitting untouched for a month – until the half-lives were low enough. He said remember EVERYTHING you touch those first 3 days you are leaving RAI traces. I have read other comments that they ate off reg dishes and put in the dish washer… Hmmm Ask your Dr about that one… Mine said those first 3 days eat off paper… EVERYTHING gets thrown away. Actually he said put all trash in a bag in the room you are quarantined in and let it site for a week even before putting in the outside trash cans. He said he didn’t want to get a call from the City Garbage Collectors because they found radioactive trash. He gave me a paper to take to the airport in case I traveled because I could set off the sensors up to 4 months after taking the RAI. WOW I’m sure it will all be fine but when it comes to radiation and protecting family if something did happen in the future to one of them I didn’t want it to be because I couldn’t isolate myself for a few days. Please ask your Dr about being around preg woman. Mine said no, not for a month. In fact he didn’t want me to go to the grocery store for 2 weeks and then I had to be arms length from anyone. My husband and I are empty nesters so I just set up one of the boys rooms and slept there. Overall not a terrible thing once I got past just finally knowing I had to do it. I know this may sound crazy, but I’m not a pill taker and a capsule that floats is a nightmare. The radioaction guy used tongs to put the pill in a cup and then I had to swallow and then drink a large cup of water. Not easy for me since I thought it might get stuck. But I lived and within minutes it was in my tummy and the geiger counter was beeping along nicely. I’ll be praying it all goes as easy as mine.

    1. Thank you so much for this note. It’s exactly what I needed to know. It all sounds do-able. It’s much like I had in mind….I hope you got the success you needed to handle the Graves.

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