RAI

Hi! Firstly it’s so understandable to feel confused as there’s so many different sources of information out there. Personally I had the same queries when I had my RAI. I personally was back at home with my dog after I was discharged - when I asked the hospital team if it’s ok to be around my dog they said it’s fine. But as a precaution I didn’t get too close to him for a few days. Washed my hands more often and so on. When I was in hospital I drank so much water to flush it out of my system so my radioactivity levels were lowered as quick as possible so I could get home! But I was there for about 4 days in total I think. 

I had a yellow card with me after being discharged after my RAI, saying I needed to stay away from children and anyone pregnant for two weeks and just had to carry the card with me. The precautions you need take depend on your levels of radioactivity at the time you’re discharged from hospital. If you have any questions, ask the hospital and the team looking after you - no question is silly and all your worries are valid. If it’s any reassurance, the time goes quicker than you think and I kept myself preoccupied with TV series I wanted to catch up on and an easy read book. Hope it all goes well for you xx

Welcome to the group @GC97 and sorry to hear about your diagnosis which comes as a shock I know.  I had RAI just before Xmas, it was almost 5 months after my operation and then was cancelled whilst I was on my LID diet (low iodine diet) which you are put on prior to the treatment.  This is so your body is starved of iodine to such an extent that the radioactive pill get to work straight away by finding any rogue thyroid cells which are starved of iodine.  The treatment itself sounds scarier than it was, I was anxious too and I know others feel the same, but for me it meant 2 night stay in hospital, isolated from others and they give you a yellow card on discharge which will set out how long you need to stay away from others and for the length of time.  It will depend on your dosage and family circumstances.  For myself I had to sleep separately from my husband for 7 nights then a further 9 days staying away from pregnant women and children.  As I am 67 and don't go out much it wasn't that difficult and I also had to stay 6 feet away from hubby for the first 7 days too, which proved to be rather amusing as we don't have a large house, but it was doable.  It doesn't necessarily mean you will have to wait for 5 months for treatment should you need it, but  rather depends on individual circumstances, different hospital and their ability to administer it and other factors, plus the pill being available.  There was a problem at the time I was booked in and it had to be cancelled and rearranged, so I was mid LID diet, stopped for a week, then had to go back on it for another 2 weeks.  It was fine though and I worried about any after effects but I was fine, just had a couple of days with a slight upset tummy, but I was given anti sickness pills to help.

Hi, thanks for the response! I spoke to a macmillans nurse today who eased a lot of my anxiety. I’m hoping the team will say the same to me about my dog as bless him he is like my little therapy on four legs! I hadn’t heard about the yellow card before so that’s handy to know. Yes I’ll need to save some good series to binge by the sounds of it and drink like a goldfish!  Thanks again and hope you are well xx

Hi thanks for the response! Yes I was quite concerned as I’ve heard a lot about people waiting 5-6 months after surgery for the RAI and I was really hoping I’d have this all over and done with by the summer time! The macmillans nurse I spoke to today said that hopefully I should receive mine 4-6 weeks after my op so fingers crossed! Must have been soo frustrating for you to have already started the LID diet just for them to cancel !! Thanks again for the insight.

I was under the impression mine would be a lot sooner too, however my follow up after my op was supposed to be 2 weeks according to my notes, at 6 weeks I had to ask then got an appointment.  RAI was 5 months and it will be 3 months by the time I get to see my Oncologist for results of whole body scan done on the final day after RAI before being allowed home.  So it does feel as though we have to wait for everything, but I appreciate just how busy they are and try to be patient.  I didn't find the LID diet too bad at all @GC97 I was able to substitute things I liked for non dairy ones so enjoyed plenty of snacks and tend to cook from scratch anyway which helped.  You will be fine x

• Hi, I had results today from my TT and I will be going for RAI, I have an appointment with oncology on Monday. I am really anxious about this. Has anyone had the dry mouth and  dry eyes after this? And what is the room like? My imagination is playing havoc with me when they said lead walled room . Probably absolutely fine but my minds got me in a 2 by 4 with no air... crazy I know but feeling really anxious. 

Hi Grapaul! I had my RAI in May 2022. I was worried too but honestly there was no need as it all went very well! Had 2 Thyrogen injections which meant I did not have to come off my Levothyroxine. This was 2 days before being admitted for RAI. They showed me my room beforehand and took me through the whole process. Windows were very small but otherwise a lovely bright room and the door was always open. Never closed! Tv and books and magazines with lemon sweets to keep saliva glands going! Nice meals and cuppas etc. Drank tons of water and showered 2 times a day. So my radioactive levels were way down when I left with practically no restrictions! I certainly clicked my heels after my 2.5 days in there but they could not have been nicer! Good luck and try not to worry. Let us know how you get on x

This was also super reassuring for me to see too so thank you! X

Thank you for this reply it has put my mind at ease. The not knowing is the worst part almost like the wait for results. I really don't like feeling restricted and  the feeling of not being able to leave the room was playing havoc in my head,  the fact the door is left open has made me feel better. When I had both my hemi and TT I never once left the room and didn't feel the need too one stay was 5 days and one was 3 but that was my choice, crazy what the mind can do when we are stressed or worried.