Radioiodine treatment - Real life view wanted!

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Hi all,

I was diagnosed with an overactive thyroid nearly 3 years ago and was treated with PTU for a while (I reacted badly to Carbimazole). I stabilsed and they took me off the medication just over a year ago. I remained stable for about 6 months or so, but at my last check up they said my blood test was showing overactivity again. They wanted to wait a few months before doing anything incase it was an anomoly, but if not they are talking about giving me radioiodine.

My next check up is next week and I'd be interested to hear some real life experiences of the effect of radioiodine incase that's the route they advise. Were there any side-effects? Did it make people feel ill? Did you have to stay off work? And I guess most importantly did it solve your thyroid problems?

Any advice much appreciated!

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  • Posted

    Five years ago I had THREE doses of RAI for a toxic goitre, causing high T3/T4, as carbimazole would not control them.

    I felt no side effects at all, even after the third dose, but I was 73 at the time. Age may have an influence as to whether one suffers side effects

    or not.

    I took the doses over about a 2 year period.

    Since then my T3/T4 levels have been in the normal range, although a bit up and down.

    Albert.

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  • Posted

    asalam alikm

    my dad suffered from overactive in the first he used newmecrazole for 2yrs,but afterhe stoped it came agin ,and at the last he used idion and now he is very well for 6 yrs andhe has no effecte from idion.sorry about my languge is not very wll.

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  • Posted

    Can't speak from personal experience but it is not a route I would want to go down until I've exhausted all other options. Endocrinologists can make it sound so simple, but I've read a lot of hyperthyroidism forums and there are many reports of people not being happy with outcome. It also means that at some point you are likely to become hypothyroid and will have to take thyroxine for the rest of your life. Although it has long been a treatment of choice in the UK and USA, attitudes are beginning to change. In the USA radioiodone is declining, and a new charter from the American Association of Clinical Endocrinologists is putting more emphasis on patients' choice of treatment. My own experience is that some UK endocrinologists seem so convinced that radioiodine is the only way to go that you'd think they were drug company salesmen rather than hospital consultants. Read as much as you can, canvas other's opinions, and if you don't feel like your endocrinologist is really listening to you, see another and another, until you get one that you feel has real knowledge based on years of clinical experience. If they just spout science at you drop them like a hot potato. It probably means that they've done little more than read up on the drug company literature
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  • Posted

    Hi, I have had rai to control my hyperthyroidism & am now hypothyroid ( but i was expecting this) I must say that it is the best thing i have ever done as i now feel almost normal. My thyroid levels before were off the scale & i had a thyroid that couldnt be controlled. This treatment is a matter of choice but, you cant stay on carbimazole forever as it can lower your white cell count. I know there is a high percentage that you will be hypothyroid after rai but, that is safer & easier to control than being hyper. Remember usa do things different to us .I must also add that my endocrinologist is brilliant they did not push me to have rai but, like i said whats the alternative? Take care. Elaine.
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  • Posted

    Hi Forgot to add that i had to stay away from my granchildren for 27 days & stay off work for the same. Suffered no side effects at all other than boredom lol. Elaine.
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    • Posted

      HI, 27 days?? Why are all the doctors telling me 24-48 hours?? Ive read online 5days to a week. Also in terms of pregnancy after have read 6mon-year but they are telling me 3mon-6mon??

       

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    • Posted

      hello i would like to share too... me too came from RAI, and my Doctor advice me on 30 days or 1 month, i really thought its 2 or 3 weeks because thats what they showed on DVD they present reading on rules...but on Dr. advice its 1 months, maybe because i have a little kids as well...all i know 6 months on men, and become preggy after 1 yr . 

       

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    • Posted

      Hi I'm late with this response but I had to stay out of work and away from others for 7 days and can not get pregnant for 18 months

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  • Posted

    Hi there - I was radio zapped in around 1995 age 40, and I too, agree it was the best option. Someone I know had an op and some of her thyroid gland removed, and now I hear that 15 years down the line, she is on carbimazole again as things have taken off with her over active remaining piece of gland.

    I went to the local cancer hospital to take my tablet - it was given to me in a little holder and I did not touch the pill. I then had to sit in the back seat of the car to travel home as technically, I was radio active!! I was supposed to sleep in a different bed to anyone else, and I was to remain away from work the folowing day. That was all there was to it. I had a blood test one week later, and received an urgent letter to say that my thyroid levels had dropped to nothing and I would therefore need to start on 150mcg thryroxine immediately. I had been told I may need thyroxine. Apparently they work the dose out to try to kill some of the gland, but not all of it. They of course cannot be completely accurate as we are all different. The consultant was surprised mine dropped so quickly.

    However, I would not have changed anything about it. I take my thyroxine daily, forget it occasionally, and suffer no ill effects. Apparently the thyroxine we take today, is in the system being used in 14 days time. I gave up smoking about 2 and half years ago, and my six monthly blood test showed the dose was showing signs of being a little high, and so I had a second test after another 2 months, and this was also a little high, so my dose was dropped by 25mcg. I am now stable again and have been for ages despite taking other medications that I was not taking at the time of being radiozapped. I was a bit anxious that it hiccuped, but was told that the change in dose was related to stopping smoking, and the menopause.

    As I say - I certainly have no regrets at all at this line of treatment. Mine was Graves Disease (if this makes any difference!?)

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    • Posted

      Hi I have just oined this forum hence only just seen your posting.

      I was wondering if you put any weight on when you became hypo.  

      I hope you do not mind my asking .

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  • Posted

    I am also being put forward for RAI treatment, depending on my next blood test results in Septemeber.

    I have read mixed reviews on how long you are nuclear (!) for after treatment and how long you should stay away from children and work. I am still confused. ?

    My friend had RAI twice and is now underactive. She seems happy and well.

    Being underactive is certainly safer than being over so I am happy to take the chance. If I can stop feeling and acting so weird by half, I'll be my happy self again.

    Thanks,

    Cath

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  • Posted

    Hi Cath, I was given the maximum dose of rai ( 800 ) hopefully to kill my thyroid so far fingers crossed this has worked. Because of the high dose & my nature of work i had to stay off work & away from small children & pregnant women for 27 days . I couldnt sleep in the same bed or havecontact with other adults for 12 days. Hope this info has helped. Elaine.
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  • Posted

    Hi I would think long and hard before you opt for radio iodine treatment. I had it 12 years ago when i was 28. With being young I didn't want a scar on my neck from having it surgically removed, that was my other treatment option. I have had ill health ever since having it. I developed Thyroid eye disease after it which i have to take immune suppressants. I was diagnosed with angina, severe chronic fatigue, severe migraines, many more health problems and still now they can't get my levels of thyroxine under control, 7 months ago because of low thyroid test results they put my thyroxine up to 200mg. I got test results for a recent blood test back last week and my throid levels are still low. All the health issues I have suffered over the past 12 years im convinced are down to the radio iodine, and there are a number of gps and consultants that agree my heath problems could also be due to it. So don't just jump in for the easiest option without doing your home work on radio iodine treatment, like i did. I regret every day not having the operation. sad
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    • Posted

      It was such a relief to read "Guest's" message because I have suffered with such similar effects after RAI in 2010. Coincidentally, that is the year I started needing glasses to read, and two weeks ago my GP diagnosed me with Chronic Fatigue; I am always tired, regardless of how much sleep I get, weight gain and difficulty taking it off (exercise does not help)...I'm constantly exhausted during my training sessions, and have also suffered terrible headaches, but these pre-dated 2010, though they did become worse post- 2010. My body just doesn't respond the way it used to, certainly around the whole weight issue....due to a slower metabollism,  even on 100 mcg of Thyroxine, I'm not losing weight. My blood test results are "normal" but I assure you, I don't feel normal AT ALL.

      As for side effects of RAI, I think it's important to distinguish between short-term and long-term effects...the short-term effects are those you experience within a few days of treatment (and the fact you have to stay away from children/pregnant women) but nobody seems to tell you about the longer-term effects. I work in the field of psychology and one of the health psychologists I bumped into at a conference in 2011-2012 said to me "if I had known you were considering RAI I would have advised against it" after telling him how poorly I've felt. 

      I, too chose RAI over surgery just because it seemed the better option, and who is to say I wouldn't be feeling this way had I gone for the surgery,  but goodness me, there are times I miss my pre-RAI days.

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  • Posted

    Hi Rachel. I had Graves disease forty years ago. I had my thyroid levels checked every year and they came back normal until this year.

    I was told the levels were slightly raised, but not enough to give me any treatment, and to have my levels checked again in a month's time. In that month they shot up, and I was really ill.

    If they're going to watch you for a few months make sure they check your thyroid levels often as they can increase very quickly.

    Take care.

    Marigold.

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