Sunday, March 20, 2011

Flush Twice: Life After Radioactive Iodine Treatment

I didn't know what to expect when I received the treatment last Friday. It's simple enough: 1. Get the routine pregnancy test (doctors can't administer radioactive iodine without verification that you aren't pregnant) 2. Swallow a capsule.

The scary part is that the capsule is brought to you in a lead container, you are told not to touch the capsule("Just toss it into your throat and swallow down with some water"), and before you leave, they give you a list of precautionary measures to be followed.

Precautions include: avoid contact with children and pregnant woman, stay arms length away from everyone, don't sleep next to anyone for at least 72 hours, don't stay in close proximity to anyone for more than two hours, use your own bathroom if possible, and --you guessed it--flush twice.

It's a bit scary. But it's also a precaution. The upside: a little time to yourself.

Here's the truth: it's not as bad as it seems. Short contact is acceptable--including hugs. And most people can return to work within 48 hours. Also, because the dose is not high, most people don't get sick. (I haven't.)

The thing I miss most is being close to the ones I love. But even this will be all that much better when we can be close again.

34 comments:

  1. I131 is scary. We decided to send the kids to stay with friends for a few days. I did the thyrogen route and feel just like you; sluggish. Now I am almost one day closer to finishing this and I'm muddling through. My dosage was 95 micro-whatevers. I think that's low, but I don't know. I tried to set a timer during the night to drink and pee, but I couldn't wake up. Too tired from yesterday's scan and stress, I guess. Thank God for Hubby who brought me flowers and stayed with me in the house to bring food and coffee. I didn't know how nice it would be to have him be with me through the whole I131 experience. Yes, I could have done this myself. It's doable. But the way my body feels, I'm grateful for having him here while I rest up from the stress I didn't know I would feel. The treatment with something I cannot see, feel, taste or smell caused me to spend a lot of hours on the internet searching for answers and finding none. How do I clean up after radioiodine in my house and is that stuff sold without ingredients actually hocus pocus? In the end, I'm using Neutrogena hand soap and sleeping on an air mattress in an old sleeping bag with throwaway clothing. I'm grateful for all the prayers and notes and for skype and email. I'm grateful for all the little nice things that concerned friends have dropped off or made for me. Wow, what a blessing.

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  2. I am going through this right now!! I started it on Friday and i cant see my kids til this Friday :(( My back has bee hurting real bad and leg cramps as well.. My question is what do u use to clean the radioation out of your house? If anyone has any advice please email me. My email is amy_greiner@yail.com

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  3. Its 5 hours into my treatment, I'm doing pretty good so far. Back is beginning to hurt some. I totally agree with the parents, I miss my 5 years old. I know she is ok cause she is downstairs with her dad n her much older siblings (24,20,14 n 9). Thank you all for these encouraging words. I hope you all a doing a lot better.

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  4. I'm sorry to hear that you are going through all this right now. If it's any comfort, for the most part I have felt myself for a good part of this year--and it's the first I've felt myself in a long time. My doctor is still working to get my dose just right, but all in all, life has been much better after RAI treatment.

    Best wishes,

    Amy Joy

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  5. Felt LIKE myself that is... it sounded kind of foul when I re-read my comment, and Blogger won't let me edit it :)

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  6. I just had the radioactive iodine pill this past Friday on Dec. 21 my children and my little dog are away from home for a week.I came back to work today. I'm still confused about how to clean up before they come home. I have stayed in my bedroom and half bath and made trips to the kitchen to eat all of the wrong things:)Just a little lonely and confused:)

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    1. Hi Stacy. I'm sorry to hear you had to start all this right before the holidays. How are you feeling now?

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  7. I am 35 yo male and I'm due to have RAI. I've been told my last blood test was over active again. It just sounds to me the downsides can be worse than the original problems? does anyone actually reccommend RAI?

    thanks

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    1. Hello. Great question. I still go back and forth at times, questioning whether RAI was the right choice. I guess that after all this time, I still wish there had been another option. However, it's easy to question it now, when I'm feeling 98% normal. The fact is, at the time, I was unable to function normally and afraid I was going to have a heart attack because I kept having chest pains so intense I really thought my heart had stopped. I was 35 at the time also, and the idea of dying at that age...well, you know. I did try medication first, but it simply didn't work for me. That being said, if I had it to do over again, I'd still try medication first.

      I hope this helps. Best wishes. --Amy Joy

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  8. I'm having RAI tomorrow, for Hyperthyroidism and diagnosed with Graves Disease. I'm still unsure what to expect tomorrow, or what happens after the RAI? Also, with the Graves Disease, my eyes are not bulging and I'm thankful for that, but my eyelids are really puffy and my eyes are terribly sensitive to light. It's sore to open my eyes when it's a grey sky or bright electric light. tinted glasses helps a lot. Anyway, can anyone share with me what to expect with my eyes and eyesight in future? Thank you, and good luck to everyone who has, or will have, RAI treatment. RD

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    1. Hi Dorothy. I'm sorry to hear about the struggles you've had with your eyesight. I did not have the puffiness, and I can't remember now if I had the light sensitivity, but I do remember having general vision problems, despite the face that I did not have the bulging eyes. I have no official evidence (eye doctor's records) to prove it, but I think my vision has improved since treatment. Additionally, my mental functioning has improved and I've been more emotionally balanced (less moody and temperamental) since treatment.

      I hope you are doing well since treatment. Best wishes. --Amy Joy

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  9. Hi Dorothy have you had the RAI? how did it go?

    james

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  10. Hi very interesting comments.

    Im the 35 yo male who was due to have RAI and surprisingly my thyroid count has dropped significantly - possibly negating the need for RAI.

    I have cut out alchol completely ( after 20 years of drinking) I have limited caffeine to one or two cups of tea or coffee a day ( not sure what this does) I now go to sleep at 9 or 10pm rather than the usual 11:45pm

    I've been drinking 2 or three cups of lemon balm tea and have had accupuncture. And to go with this I have rationalised my life and
    my job too. Also taken up a bit of basic meditation.

    I don't know whether my hyperthyroidism was brought on by genetics, stress, poor diet, alcohol lack of sleep or all of these things but I may just have found the cure.....possibly.

    frankg_25@yahoo.co.uk

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    1. Thanks fantastic. Thanks for passing along the tip. I have heard that acupuncture can be effective, but it needs to be repeated regularly (my understanding was several times a week for a while). In may case this was cost and time prohibitive since I was already in pretty rough shape when we discovered it was Graves Disease making me so miserable. I'm happy to hear you've been able to use alternative treatment options. Best wishes. --Amy Joy

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    2. The plot thickens, to cut a long story short. I found out I was gluten intolerant, within days after giving up gluten (right trauma at first) my lower body rash dissapeared, throat/tonsils became less sore and normal and my hearts stopped thumping away.

      Could this be it? could the hyperthyroidism have been a symton of a change in the body which resulted in gluten intolerance?

      My theory is the stomach was damaged and lost it's natural ability to digest gluten and caused an auto immune disorder.

      cheers

      frankg_25@yahoo.co.uk

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  11. I had radioactive iodine therapy for my Graves Disease two weeks ago. I recieved the pills on a Thursday and was back to work the following Monday. I felt fine the first week but now my neck really hurts. It hurts worst in the evenings and sometimes can make eating and swallowing difficult. Did anyone else have this issue? If so how long did it last and are there any recommendations to help with the soreness? Should i be concerned?

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    1. I didn't have a great deal of pain after my treatment, but I did have some, and from what I read, neck pain is not unusual. The pain that I did have wore off in a few days. As with anything, if the pain is severe, it couldn't hurt to give your endocrinologist a call. I hope you are feeling better soon. Best wishes--Amy Joy

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  12. I had my treatment Friday and it hads all been a bit bizarre. Stayed with my mum last 2 days so I could have access to separate toilet and bathroom. It is strange because I know I have to take precautions re the radiation but I feel no different except for being a little tired. I head home to the farm to all my animals today will they be in any danger can I touch them? I am worried about touching the dogs, the fat and my chickens. Dies anyone have any help. Email me at kmoneill64@hotmail.com

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  13. Thank you all for posting your experiences. I was diagnosed with Graves disease over 4 years ago and was very hopeful and prayerful that my overactive thyroid would go in remission but after so many years and so many tests my levels are the exact same. So this may be my year to get the RAI treatment.

    My only concern is my EYES!!!! My very first symptoms were my eyes. I was looking in the mirror one day and noticed that one of my eyes was unusually larger than the other. to make a long story short my eyes got huge. Now they are much smaller than back then. They are bigger than they were before the thyroid problem but they actually look pretty nice being bigger lol. So I dont want them to get any bigger.

    Anybody have any eye bulg after RAI. I researched it and that is one of the side effects.

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  14. Hi Amy,
    Thank you for your blog, this space allows us to interact with people who have the same disease, I was diagnosed with Grave's Disease four weeks ago, my doctor prescribed Tiamazol but two weeks after appears rash in my skin, they told me that I was allergic, in Mexico is the only drug, so my doctor prescribed radioactive iodine, I saw another doctor and told me he could get PTU and explain what the damage to the liver, but reading your experience and online comments I think I prefer the iodine. I have a bit scared and wanted to ask if you know something about the infertility undergoing this treatment, because honestly I would like to be a mother.

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  15. Hi Amy,
    I had my RAI on Wednesday, June 19th, 2013. Could you please let me know which cleaning products to use? I would also like to know if sitting outside in the sun is safe.
    Thank you!

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  16. Hi there.I had my RAI on 10th July 2013.After being on 40mg carbimozol for the last 2 and a half years. I cannot even stress how ill i have felt over that time Anxity,irritable,sweats, palpatations the list is endless and i feel i would have done anything at all possible to stop feeling how i did.I have 5 children ranging for 12 to 3 and i can't tell you how difficult it has been for me and i'm only on day 3 i feel like a complete freak and i am totally obscessed about contaminating everything and everyone it's awful.My specialist told me i would be ok to have contact with hubby after 3 days and children a week but then when i went for then treatment the SCIENTIST who give me the iodine treatment told me 11 days away from hubby and 3 weeks for the children i feel now like i should of told him to stick there and then as iv'e done nothing but cry ever since and just wish i'd of done more research but it's done now and am hoping things will get better sorry for the rant but seems like everyone here knows where i'm coming from Thanks for reading....Bored RAI paitant lol!

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  17. Hi all. I had RAI Oct '08 six years after diagnosed with graves disease and on carbimazol at age 52.Six months later became hypothyroid. Have been on thyroid replacement since. It's been hard to zero- in on correct dosage of thyroxine. Am told it should be 0.7mgrms/kilogram of body weight. My ideal dosage should be between 125mcgrms and 175mcgrms. Till date my tests have never come out as euthyroid. Have always fluctuated between hypo to hyper, sometimes with the symptoms of each. This is the only disappointment so far. Had expected post RAI life would be a matter of popping 1 or 2 tiny tabs every morning on empty stomach and then, euthyroid! I do my TFTs every 3 months and adjust my dose as needs be without referring to my endocrinologist. I have concluded the euthyroid dosage for my present body weight is between 150-175mcrgrms. At 150 I go hypo and at 175 am hyper. Unfortunate tabs come in 100, 50 and 25mcrgrms sizes. If only 12.5 available, would have tried it hoping to become euthyroid. All the same life much with RAI than before. Good luck to all.

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  18. Hi all. I had RAI Oct '08 six years after diagnosed with graves disease and on carbimazol at age 52.Six months later became hypothyroid. Have been on thyroid replacement since. It's been hard to zero- in on correct dosage of thyroxine. Am told it should be 0.7mgrms/kilogram of body weight. My ideal dosage should be between 125mcgrms and 175mcgrms. Till date my tests have never come out as euthyroid. Have always fluctuated between hypo to hyper, sometimes with the symptoms of each. This is the only disappointment so far. Had expected post RAI life would be a matter of popping 1 or 2 tiny tabs every morning on empty stomach and then, euthyroid! I do my TFTs every 3 months and adjust my dose as needs be without referring to my endocrinologist. I have concluded the euthyroid dosage for my present body weight is between 150-175mcrgrms. At 150 I go hypo and at 175 am hyper. Unfortunate tabs come in 100, 50 and 25mcrgrms sizes. If only 12.5 available, would have tried 162.5 hoping to become euthyroid. All the same life much better with RAI than before. Good luck to all.

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  19. Hi, I'm currently on day 3 after RAI treatment, living in my mothers extension away frim my young family :-(
    I've had a high dose if radiation at 523 MBq so i cannot have normal contact with my youngest child for 20 days. I missed her first full length day at school and my eldest walked into school sobbing 3 days ago. Braking my heart being away from them.
    For me that's the worst part, the isolation. After 8-9 years of living with graves I'm hopeful this will help.
    Good luck to everyone else going through this difficult time, I feel your pain! Mrs W x

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  20. I am 56 years male diagnosed with greaves disease had rai 1 day ago so far so good I lost a lot of weight, had sweats,,shaky hands, and insomnia I am hoping life returns to near normal can any one comment.

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  21. will I regain some weight and sleep better

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    1. I hope you are finding that you are sleeping better already, but I know since it's only been a few months, your doctor may still be working to adjust your levels to get them just right. As a result, you may not yet be sleeping well. If so, please know that once my levels were on track, I did sleep much better. I hope you find that holds true for you too.

      As for weight, I addressed this issue in the next comment, but the answer for me was: once the levels were right, I was back to my normal, healthy weight. Best wishes.

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  22. Hi everyone, I will have RAI treatment next week. My emotions fluctuate from days when I am happy to days when I am extremely irritable, anxious and depressed. I have lost friends in this stage but my family is very supportive and they want me to do the RAI and I am doing it for them. I have a silly fear, gaining weight after RAI. Did anyone keep their weight after RAI? I am afraid of gaining weight and being even more depressed. thank you

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    1. This is a very common concern for those of us that undergo RAI treatment, and one that I had as well. (My hyperactive thyroid had me eating whatever I wanted and not gaining weight. I could literally lose weight overnight, so naturally, I was afraid of what might happen after RAI.) The good news is that while I did put on some weight after RAI before I was on thyroid replacement hormone (Sythroid) and while they adjusted my level in the first six months to a year, my weight has returned to normal and has stabilized there. My RAI treatment was over four years ago, and I have maintained a consistent, healthy (thin) weight for at least the last 3 (Yay!). So it certainly is possible, and I hope you find the same holds true for you.

      (Note: it took years before my levels were just right so that I felt well, but my weight had bounced back long before that. The key for me was I learned that caffeine affects Synthroid absorption--something none of my doctors knew--so once I figured that out & adjusted my caffeine intake, my levels stabilized.)

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  23. I will take my RAI treatment Friday, I feel pretty good, took thyroid meds (hyper) for about 10 months, i have 5 nodules, non cancer, but my doctor still want be to the RAI treatment. I want to feel good, being overweight, is not good.

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  24. I gained about 10lbs ever since I had the Radioactive Iodine Treatment years ago. I take my medication in the am first thing and try to wait 30mins before eating / drinking. Its a struggle losing weight. I have tried cleanses, diets. What am I doing wrong?

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  25. I had RAI six months ago. I was monitored all after the treatment but I moved and I was in the wrong doses for synthroid. My levels look normal but I am experiencing severe sever hair loss. Is this expected? Do you have suggestions?
    Thanks

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    ReplyDelete