I’m planning to have my first RAI soon (fingers crossed only one will be necessary)
I’m trying to be very strict about the low iodine diet to help the uptake. This means I’ve been cooking everything from scratch with no sea food, dairy and only using strictly non-iodised salt.
Once admitted to hospital, I’ll have much less control over what I’m eating. Can obviously still avoid seafood and dairy but I can’t say for sure if they’re using LID-friendly salt. However I was thinking that it’s okay to consume iodine once I’ve physically swallowed the RAI capsule because the stay over in hospital after that is purely for safety reasons to others. Am I right in saying I can eat normally as soon as I’ve swallowed the capsule and waited two hours to let it work?
I’m a bit concerned as I have the iodine uptake scan booked for a few days after my RAI and have suddenly become concerned that I should be following RAI until this is done?
Can anyone help?
Hi, Im booked in for RAI at the end of March, I've been told to do the LID for 2 weeks before the treatment and to continue for 2 days after. They said I will only be offered LID suitable meals in hospital during that time. I hope it all goes well for you, I've been looking through past posts about it here to be as prepared as possible. Can you ask your specialist nurse or the ward manager at the hospital?
That's interesting, my hospital assured me it wasn't necessary to do the diet at all as we live in a country that doesn't include iodine in products as a rule.
When I had my first RAI in March 2019 it was a very strong dose and the first meal in the hospital was fish and rice. I think that every hospital has it's own procedure, off course it depends which country you are from. You shouldn't worry about the meals in the hospital they would now what you are allowed to eat and what not, after all you are in a separate ward (don't know if this is the right word).
I read this and wondered if you have now had your RAI treatment? I’m due to have mine at the end of April so therefore looking for an insight of what to expect! A little nervous of the unknown.
Stay well and positive
I had it in February. Wasn’t too bad really. The boredom and isolation is the worst part but if you just drink plenty of water and have a couple of showers then you should be back home soon enough ️
Can I ask if you had any side effects?
No side effects. Thankfully RAI is a lot less nasty compared to other types of cancer treatment like chemotherapy or external radiotherapy. I had a very mild dry mouth tbh, that’s quite normal. Take sherbet lemons to suck on.
Yes, I had it last week.. feel a bit silly for getting so wound up beforehand now. The nurses and nuclear team were so lovely and explained everything clearly. It seems different hospitals have different rules but do drink lots and shower a few times. Some people have side effects and some people don’t, personally I had some nausea but the tablets they gave me for it helped a lot. Good luck with it all x
Thanks for your reply ️
For me my taste buds went weird after I got home. Food tasted like it had no salt in it. I believe this is quite common and it doesn't last - about 10 days for me. I found that having a bottle of lime juice in to use like a sauce helped things.
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