Radioactive iodine treatment worries

[GreenGirl80]

Hi everyone, I am due to have RAI on Friday following a thyroid uptake scan today, and as I am looking into it all, all I find are negative stories about how awful it is and the problems that follow. I have been hyperthyroid for 13 years and my endocrinology consultant says it's advisable now to have a more permanent solution after trying PTU and carbimazole as it always goes high on trials of stopping the medication. Just wondering if anyone has had good experience with RAI, without weight gain and all the other symptoms that are common. Feeling absolutely terrified at the moment that I am signing myself up for treatment that will make me feel worse, not better. Any experience or advice greatly appreciated.

[dusty2]

Hi, I had RAI in 2013 & have not had any problems. It was straightforward & I had regular follow ups to check my blood & how I was doing. I started Levothyroxine approximately 3 months after having RAI & I have been ok on that.

[GreenGirl80 in reply to dusty2]

Thanks for replying dusty2. Would you say you feel better in yourself after the treatment? And did you find it manageable with keeping safe distances from people in the days after the treatment? I am sort of dreading that part

[dusty2 in reply to GreenGirl80]

I felt so much better the day after it, palpitations & sweating stopped. It was quite hard staying away from people, even going to shops I had been told you couldn't as the person serving you could be pregnant & maybe didn't even know they were pregnant. Same with public transport. They give you lots of information to take home with you with all the do's & don'ts. I was going on holiday just over 3 weeks after it & they gave me paperwork to take with what I had & who to contact for anybody who needed to know. We were asked at immigration in New York if any us had recent medical treatment (I was unaware I was setting off all the officers alarms ) & I said I had & had to give them paperwork. I was taken away & my husband wasn't allowed to come with me. It was all ok in the end & they were very pleasant & apologetic to us & fast tracked us through TSA precheck which I still have embedded in my passport but my Husband doesn't since we renewed or passports.

[GreenGirl80 in reply to dusty2]

Thanks dusty2, sounds like it was pretty stressful for a while there with the travelling situation! To be practical, I think I will get shopping delivered and just go for walks somewhere pretty isolated - think it might be a lonely couple of weeks but everyone says I should try to enjoy the peace (can't go to work as I work in a public library)

[pennyannie]

Hello GreenGirl

I deeply regret having had RAI back in 2005.

There are full details on my profile page along with the many replies I've made to people previously regarding this treatment option in relation to Graves Disease and to the only post treatment option available on the NHS being Levothyroxine.

We are all different, I wasn't given any treatment options, and at 56 RAI was ordered and administered within 15 months of diagnosis. I was fine on Carbimazole and continued to work and got on with my life.

If I could have my time again, I would try and stay on anti thyroid medication as recently detailed and suggested by Professor Toft the eminent endocrinologist in his article :-

Thyroid Hormone Replacement - A Counterblast to Guidelines, which is available here.

It seems many people have RAI with no obvious health issues, maybe I am just an exception.

I am sure you have done your research, and having been on this roller coaster of a ride for some 13 years understand you just want an end to it all. Your metabolism and body have been through a lot, so please ensure your that your ferritin, folate B12 and vitamin D are all " well in range " as your ability to convert the Levothyroxine into the T3 which is what the body runs on, can be compromised if your core strength is not solid and strong.

I now manage Graves, thyroid eye disease and hypothyroidism. and self medicate, buying my own Natural Desiccated Thyroid hormone replacement as I was refused T3 by the NHS and have found no help or understanding from within the NHS system.

[GreenGirl80 in reply to pennyannie]

Thank you pennyannie, I feel like I probably don't know as much about it as I should - only had the initial appointment with nuclear medicine last Monday, and now having the RAI on Friday. I think I definitely need something to change, because it has been going on for so long, but I really am quite concerned after reading the experience some people have from it. Thanks for the information re vitamins etc, will definitely follow that up, I think I have really put this to the back of my mind and have avoided looking into it too much when I didn't have immediate need to. Sorry to hear the problems you have experienced, I hope everything is going well for you now

[cbraffe]

We are a unique individual and will have a different experience depending on the state your body is in. I had a total thyrodecotomy 2 months ago. I read quite alot of bad experiences that others had encountered. I cancelled my appointment twice. I am glad I had the surgery as I feel so much better. Although this can change, I grateful that for the first time in a very long time, 6 years to be precise I feel ok. I had so many symptoms that have all gone. I had thyroid eye disease, sensitive stomach, heat sensitivity, palpitations, anxiety , always hungry , my life was controlled by where to find the closest bathroom due to needing the toilet every hour sometimes even twice in an hour and so many more. At the moment, I am symptom free though I am heavier it is a small price to pay compared to what I was experiencing before. I wish you the best of luck in your treatment.

[GreenGirl80 in reply to cbraffe]

Thanks for sharing, cbraffe. Good to hear how your symptoms improved. I am highly anxious a lot of the time, and I don't know anymore if it is made worse by the thyroid problems, or if it's just me - I really hope it improves. The heat sensitivity thing is another big one for me, and I would be so happy if that settled. Glad to hear that the surgery had positive outcomes for you

[cbraffe in reply to GreenGirl80]

You will be fine. I had three episodes of thyrotosis and nearly had a heart attack. Just do what you feel is best. Anxiety is a big part of hyperthyroidism

[bantam12]

I had RAI and was absolutely fine, no side effects, no problems. This has to be your decision so don't be swayed either way by what you read. Good luck

[GreenGirl80 in reply to bantam12]

Thank you, I think I will go through with the RAI, it feels like now is the right time after trying with the medication for so long. I can't really see any other choice to be honest. It's good to hear that it isn't always a negative experience, thank you

[Hidden]

I had it aftera multinodular goitre removal to kill off the remnants of thyroid tissue that the surgeon could not remove. I voluntarily opted for it because I had no desire for those tissues to regenerate into some monster that might just kill me on the third attempt.

I wish I had not opted for it because those remnants could have regenerated into a normal thyroid and given me extra years of perfectly good health.

How was I to know that levothyroxine on its own was guaranteed to give me perpetual bad health with little or no chance of getting any sensible advice from the NHS, let alone prescriptions for NDT, the only medication that will ever give me any sort of good health?

[GreenGirl80 in reply to Hidden]

Sorry to hear that Panda321, I don't know very much about the negatives of levothyroxine to be honest, but will try to research it after what you said. All I hear is "hypothyroid is easier to treat" etc. Thank you

[moljanie]

Hi there I too was hyper for 13 years. Dr reccomended rai which I flatly refused Mt view was that I would be swapping hyper for hypo which I wasn't prepared to do. Dr suggested I would be feeling hyper if I didn't have rai. Which isn't the case for me as my hyper righted itself after years of treatment on low dose of carbimaxole 5mg. I made better lifestyle choices by eating a more natural diet and quit smoking as I also had thyroid eye disease. Environmental factors were a part of my problem too. I also thought rai was too damaging for me and I'm glad I made the decision not to have it . I hope this may help you in making your decision. It is your choice the doctors are not always right one treatment doesn't suit all I believe. I am now free of thyroid problems still have small swelling in my eye but no thyroid symptoms at all . I wish you well in your recovery .

[GreenGirl80 in reply to moljanie]

Thanks for sharing moljanie, I think the lowest dose I was on for maintenance was 10mg carbimazole. Currently on 40 after a trial of stopping the tablets after it had been well controlled for a good while. It always ends in thyrotoxicosis for me, and the doctors therefore think that it will never resolve with medication. I really want to feel 'normal' although not sure what that is anymore! Just don't want to feel worse, but definitely don't think I could carry on being hyper forever. So difficult, just hope it improves things for me. Thanks, and hope things continue to go well for you

[moljanie in reply to GreenGirl80]

Hi yes whenever I stopped carbimaxole hyper returned . I do hope you get the right treatment and you find healing . Try and keep your stress levels down as I feel that it played a part in my thyroid problem. Let me know how you get on . All the best .

[GreenGirl80]

Thank you, hope all is going well for you now Scrumbler