Radioactive iodine

Hi SessieW

Here is my RAI experience.

I had RAI in December 2017 at QE Hospital in Birmingham. I went in on the Monday morning, took the pill around 2pm then was let out on the Tuesday lunchtime as I had managed to get levels right down due to drinking lots of fluids.

I then stayed at my mums house until the Saturday away from my 10 year old daughter although she did come to see me every day and just stood in the doorway to say hello. Luckily my family home was only 5 mins away.

For me personally I found the diet beforehand the hardest as for me it was 3 weeks (as at my appointment doctor said start straight away) and ended up losing a stone which I couldn’t afford to lose as underweight already.

The RAI well equipped room had tv, DVD player and I just sat watching films, reading and catching up with friends on iPad. I was able to bring everything home that I took in with me.

I was given RAI as had hurthle cell cancer.

The whole RAI thing sounded so scary when I read about it but I can honestly say for me personally it was easy, no side effects at all.

Hope this helps.

Hi SessieW,

Everyones experience is different as it will be dependant on a number of factors for example the dose you receive.

Mine was so straight forward and I hate to sound so blasé about it but I found it kinda relaxing. I went in on the Monday afternoon and got out on the Wednesday morning with no restrictions at all including children.

I had no side effects at all, I made sure I brushed my teeth as soon as I took the pill, drank 2L of water each day and showered each night and morning, changing my pyjamas each time to fresh ones.

My room had a tv with DVD player and loads of dvds. I also had a phone, but I was allowed to take my iPhone in. Perhaps you could FaceTime your son each day so that he doesn’t feel apart from you. I was also allowed visitors but they had to stay behind a screen and could only come in for a maximum of 30 mins.

Try and think of it like a spa break with less facilities lol

xx

Heya

I hope you've seen the above replies you got, this website can be a bit difficult to navigate sometimes and def isn't intuitive! 

I've had RAI 4 times so far because my cancer has spread to my bones. The dose you'd be getting would either be a low or mid dose I'd expect, but even at one high dose the side effects are minimal. I always tell people that if they are OK taking them, to take some paracetemol and Ibuprofen in with you. This is because a common side effect is a headache. In the UK, it's standard practice to give an anti nausea tablet before the RAI tablet. You might feel a bit sick the next day, but you can buzz a nurse and ask for another tablet and you're sorted. However that's really the only two common side effects.

The other advice I give is to take in a bag of sour sweets to suck and keep your saliva glands working and flushing through. Also, drink at least 2 litres of water a day the week before RAI to make sure you're well hydrated, then continue with a minimum of 2 litres of water a day while in hospital. This helps to flush through the excess radiation so it passes out of you ASAP. That, coupled with 2 showers and 1 hair wash a day, means you should only be away from your son for the 4 days you're in hospital. The biggest set of restrictions I've had was when I was released on the Thursday, I was told to steer clear of folks until the Monday. They tell you 2 weeks apart as a worst case scenario, as there are some people who don't get the advice to drink LOTS. Or lots to them is 500ml in a day. 

After RAI, if you do still have restrictions, you can't go to a hotel or B&B as it puts the staff and future guests at risk. So if you do have restrictions, it needs to be the house of friends or family. Or even a tent in the garden, though unfortunately we're coming out of the season for that! Lol

Recurrence happens when a thyroid cell decides to multiply somewhere in your body. RAI kills off thyroid cells. So the fewer thyroid cells there are in your body, the less likely you are to get a recurrence. So I'm all in favour of it if the doctors think you need it. Especially these days, because they will only recommend RAI when it really is needed. Where a few years back, it was given to everyone after even the tiniest amount of thyroid cancer was found.

I hope that helps, and please do shout if you've any more questions or concerns! 

Lass

Xx

Sorry for my slow response and thank you very much for coming back to me. That’s really reassuring to hear! 

Hi Lass - thank you so much for coming back to me - all the advice is  really helpful. I am not normally a drinker but I will stick to the 2l you suggest etc - anything to get me back to my son sooner!! I really wish you all the best with your journey - it sounds like you have really been through it!! X