Newbie Here... Hello

Hi Nevs25 just wanted to welcome you to the forum. I'm sorry you've not had any replies yet re the RAI treatment. Unfortunately my variant (Medullary) doesn't respond to RAI so I can't help you but hopefully someone will pop on soon with some advice. This forum can be a bit slow sometimes but it's a great resource from members who haved experienced this first hand so hang around and I'm sure someone will reply soon. 

Best of luck with your ongoing treatment. X

Hey, 

I had the 131 and stayed in hospital one night as my levels dropped really well, the diet wasn't too bad tbh as long as you avoid everything you shouldn't eat and limit some. It's not an exact science just the lower Iodine helps it work better.

I didn't seem to have any side affects from it itself, I have side affects from the high dose Levothyroxine and high T4 levels etc.

Few days after you have the RIA you'll go back to hospital for a scan to see the uptake of it.

Hi, happy to hear your cancer hasnt spread it can be daunting waiting for the results. 

Ive had a total thyroidectomy and right neck disection. Waiting for the appointments was so scary kept worrying if it had spread or preparing for the worst news. From what I've read and been told everyone feels this and its normal you just have to be positive which is hard when there is so much going on. 

Im still new to the journey (i think) was diagnosed back in oct 2024. Just had RAI and was told didnt have to do the diet (UK). The thyrogen injections felt like a flu jab tiredness, headaches and I had a high dosage of RAI meant staying in overnight.

Take stuff to do if you need to stay overnight like colouring, books, headphones etc it can get boring and drink plenty of water. Its been a week and a half now for me and think side effects are hittng now such as loss of taste and dry mouth but felt fine last week except for becoming an insomniac . Also enjoy all your favourite foods if you can before, hard to describe the taste after but you can tell especially with your favourites looking forward to the day i can taste them properly again

Everyone is different though I'd recommend cancer research websites like macmillan, cancer research for reading. There was a website called butterfly stories( i think thats the name) about other peoples stories but theres a few tik tokers who post their journeys i scrolled through them and found advice in the comments seems everyones posting there nowadays but careful what you read you will know what ones to trust. 

Hope all this helps, from what I've been researching it does eventually get better and thats something to look forward too, but dont rush yourself and tell your GP or specialist nurse if any side effects are too much they can help.

Jess x