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  • kindergal
    Participant
    Post count: 1

    After 15 months of PTU, I was taken off and in less than a month Hyper/Graves was back… UGH! So, RAI next month for me. Reading on line is making me crazy with what to do and what to expect post RAI. I have two small kiddos who are going away for 5 days…is that enough time? Also, how will I feel afterward??? I go back to work 9 days post RAI so just wondering how I will feel? I am event planner and will be on my feet and have to be thinking clearly that weekend–Days 9 and 10. I start my LID two weeks prior to RAI but have been given NO instructions for what to do afterward except stay isolated by 3 days…which I don’t think is enough time.

    Bobbi
    Participant
    Post count: 1324

    Hi, Kindergal, and welcome to our board.

    The precautions that we are given after RAI are to protect those around us from unnecessary radiation exposure. It is the type of thing that causes the dental technician to leave the room, or go behind a shield of some sort, before turning on the xray machine. Radiation exposures are cumulative through our lifetimes, so avoiding unnecessary exposures — however slight– can prove to be important over time.

    The precautions you will be given may vary from those others of us have been given — or that you have read about online. It depends upon how large a dose of RAI you receive. If you were looking at any boards that included thyroid cancer patients, their recommendations tend to be significantly different from ours, because they get a much, much larger dose of RAI than we do. Anyway, you should pay attention to the instructions you are given. I can give you a general idea of the “why” behind the instructions, but I don’t know what your specific instructions will be.

    RAI is very soluble in water. What this means is that any RAI that does not get taken into your thyroid cells within the first 24 hours or so, will be excreted from your body within two or three days via urine, sweat or saliva. Because of this reality, we are advised to double flush the toilet, sometimes use disposible eating utensils for a couple of days, double wash sheets, etc. The recommendation that you received for three days of relative isolation has to do with this issue. After three days — and perhaps even before that time frame is over — you will no longer be putting RAI back into the environment.

    Other types of precautions have to do with the radiation that is contained in the thyroid, which is around a bit longer. We are advised not to hold small children or small pets against our neck area for a week or so. (Again, pay attention to your specific instructions.) Radioactive elements “lives” are measured in half-life terms. After one half-life the element has lost half of its radioactivity. Arbitrarily, after five half-lives it is considered essentially gone because such a wee amount remains. I131 — the treatment form of RAI — has a half-life of 8.1 days. So after 8 days, half of the dose that made it into your thyroid is left. After 40.5 days, it is essentially gone.

    Keep in mind that the radiation you experience will be more than anything that you might inadvertantly expose your family to, and that even that amount of radiation has not been shown to harm US in the long term. Take your precautions, but don’t make yourself crazy if your child runs up and wants a quick hug after a week, in other words.

    As to how you will feel 9 or 10 days out. The true answer will be ” really hyper.” Thyroid cells not only make hormone, they store it for future use. As the RAI damages/kills thyroid cells the cells released their stored supplies of hormone. And while the damaged cells will not be making new hormone, they will dump their stored hormone all at once. This tends to happen approximately one week after RAI — give or take. So we are more hyper than normal then, for a few days. The most potent form of thyroid hormone (T3), which accounts for about 20% of the hormone production of the thyroid cells, has a half-life of three-quarters of one day. So, when the T3 is dumped we feel horridly hyper. The dumped T4, which must be converted by the body into T3, takes longer to wear off, but isn’t as immediately potent. Sometimes, our endos try to counteract this effect by prescribing an increased dose of beta blocker. Sometimes, they tell us to resume the ATD (like PTU or methimazole) for a while. You could ask your doctor about that.

    Please understand that you won’t be back to normal again for a while and try to plan for it. We need time at normal levels of thyroid hormone for our bodies to heal from the mess that being hyperthyroid made. So, you likely will not be thinking as clearly as you normally would 9 or 10 days out. Knowing this, you may be able to use the five days you’ve scheduled for R&R to go through lists, or otherwise try to plan ways to cut yourself a bit more slack. Do not assume that you will be physically able to take care of everything like you normally do. Do you have people to whom you can assign tasks? For sure, you need to prioritize, especially on the home front. Frozen dinners work. Small children may think it is actually fun, to help you run the wash. And dust can accumulate for a few days. Do give yourself as big a break as you can.

    I hope you are feeling much better soon. Good luck with the RAI.

    gatorgirly
    Participant
    Post count: 326

    Hi Kindergal,

    I had RAI, and ended up going back on PTU for a few months because I remained hyper for a while (22 weeks). I didn’t feel bad in the first couple of weeks, just kinda felt like I did when I was on PTU before the RAI, which was slightly hyper. I had the RAI on a Friday morning and went back to work on Monday, and never felt like I needed any time off but everyone is different. I was severely hyper when diagnosed and had what my endocrinologist called the most extreme/severe Graves he had seen, but I am also pretty stubborn and don’t like missing work ever. I was on 150mg of PTU before and after RAI for a total of about 16 months and my levels remained slightly hyper even on the PTU, which is why I did the RAI.

    Good luck, you’ll do fine!

    NLBatten
    Participant
    Post count: 47

    Ok, this might make others mad, but honestly, I sometimes wonder if I missed something because it was really easy. Maybe I haven’t been dealing with it long enough or maybe I am in denial. The RAI part really felt like no more than taking a pill and then taking a few precautions around others for a few days. I did mine Friday at 1 and back to work on Monday. Now, as your thyroid hormones regulate, you may have some issues, but it is not necessarily related to the RAI. I felt a little spacey a few days but I am pretty sure that was the beta blocker (which I only took for 30 days). Then I went hypo pretty fast – 6 or 7 weeks and I could tell something was up – weight gain, hair loss, brittle nails, etc. but all in all, the RAI itself seems something not to be afraid of at all.

    I know others have much more serious Graves symptoms, so maybe I am just really lucky….

    beach45
    Participant
    Post count: 178

    Hello,

    I had Radioactive Iodine Treatment (RAI) May 3, 2012. I was on Methimazole, antithyroid drug for 20 months prior. It did not work to get me into remission. I know I had a pretty bad case of Graves prior to treatment and I chose to use antithyroid drugs yet my doctors felt it would have been better to do the RAI first. At least I tried.

    So I was nervous about RAI yet I educated myself as much as possible. I stayed away from negative sites/forums also.

    It was not bad at all and even though I do not work currently, I probably would have been able to work right away afterwards. I had 15 millicuries (15 mCi) of the I-131/RAI. I asked my nuclear doctor a bunch of questions and he told me 2 whole days isolated was sufficient. I did 3 days myself and the rest of the time I was still very careful. I do not have children, yet my vet told me to stay away from my cats for 6 whole nights because they both sleep up near my neck. He did say I could have them near me for about 20 minutes tops while I sit on the sofa. My husband stayed away for 6 nights also because he just wanted to take extra precautions. The Nuclear department where you have the RAI will give you a sheet of what to do as precautions afterwards (they should). I received my post RAI instructions 2 days before when I had my Radioactive Uptake and Scan (I-123). I used throw away utensils, kept my laundry separate, flushed my toilet twice, drank a lot of water especially the first two days afterwards, and cleaned my bathroom up well afterwards. The instructions should tell you everything and I personally always ask a lot of questions.

    That part which I was fearful of prior, was much easier than I thought.

    I am going on eight weeks post RAI and I am still unfortuntely hyperthyroid. My endocrinologist told me being on antithyroid Methimazole for 20 months will help me not to have as much of an increase of heart rate post RAI when things get stirred up a bit. He explained what could happen post RAI as also a result also of me asking a lot of questions. Everyone is different. I have friends here who went hypothyroid in six weeks. My husband has a relative, a doctor who had RAI and did not go fully hypothyroid until one year afterwards. We all get different dosages of the I-131 depending on the uptake and what the endocrinologist decides, along with the nuclear doctor in my case. My endocrinologist said I would get 8-15 millicuries which I got the highest due to my circumstances. I no longer see an endocrinologist who gives only 30 millicuries to guarantee total ablation of the thyroid gland.

    Kimberly, one of the online facilitators here on GDATF forum, provided the below link (I provided the one video) in a message on this forum, regarding the videos by doctors at the 2011 GDATF conference for patients and families. I found this video very helpful as I wish I had seen it prior to my RAI. It has a chart in it in one of the Powerpoint slides of post RAI and how many millicuries a person receives and days of precautions. I find it very helpful.
    http://www.youtube.com/watch?v=XNejWQCwB10&feature=plcp

    Even though I am still hyperthyroid, my numbers are changing from four weeks ago thank goodness and I started feeling more myself a week ago. I also did not need a beta blocker or another round of Methimazole post RAI as I do some supplements and other stuff which my doctor is okay with yet I will not discuss that here. One note, for me my resting heart rate was much worse pre-Methimazole than post RAI these past few weeks. I will say for me about the 6th week post RAI my pulse started going into the 80s more consistently.
    I monitored my heart rate with a pulse oximeter I have here post RAI to make sure I was not having a resting heart rate of over 100 bpm consistently because if so, my doctor would have given me a beta blocker. He reassured me that because I was on Methimazole so long pre-RAI, that I should not have major problems. I did okay, glad to be on the road to getting better and looking forward to hypo and going on to taking Sythroid or some T4.
    I did not feel well at all pre Methimazole with my hyperthyroid symptoms and with 20 months on Methimazole and I actually have more moments of feeling better post RAI. We are all very different. Some do very well on antithyroid drugs; I know of others who live by me who had much success with RAI and are living productive lives taking Synthroid. My doctor actually has two patients post RAI who are eurothyroid never needing to take any T4.

    Best of luck. Please keep up posted.

    Beach

    mvk
    Participant
    Post count: 33

    Good Morning,

    Good luck on your RAI treatment. I had mine on 4/23 so I am two months post. I received a 28 mCi dosage for ablation. I definitely got more hyper after and I think I probably am still border hyper now. My labs a month after weren’t great and I’ll have a blood draw this next week and am hoping for improvement. The endo says it is way early. I am 62 years old and this is the first time in my life I have ever been sick so to say the least I am overwhelmed with this disease. I care for my granddaughters everyday so I had to stay away from them for 9 days. I am assuming this was because I had a fairly good dose from what I see on the forum. That was really hard for all of us. I feel fairly well. I am off my betablocker now and much less muscle pain(which was a big problem for me). Still not exercising per doctor’s request. Tremor is much better. Sometimes none in fact but still slight most of the time. I still in the mode of “I hope this works!”. My eyes are gritty but look OK . I am using the preservative free drops everyday several times a day. I had an eye exam in February so they have a baseline if things change. That’s about all I can think of.

    Best Wishes,
    mvk

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