Radioactive Iodine Doses

Hi MCG 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Wishing you all the best with your upcoming treatment.

Hey Hun, 

I had my RAI on the 19th of May a month ago today. I had a 3360mbq which is the medium dose. The only symptoms I had was a funny stomach (if you know what I mean) and nausea, once my levels where below a certain level the nausea passed and that was the day I could go home. I spent 4 days in. 

I took some snacks which i didn't touch. Fresh berries which I did have all of. Then a colouring book, yoga Matt and a book. The TV in my room didn't work so they provided a tablet. 

I only had restrictions for 2 more days when I went home. I was in the cinema 3 days after being released watching lilo and stitch.

Hello Buttertfly1998 

Thank you so much for sharing your experience with me. I bought yoga mat today I think it is a brilliant idea, I wouldn’t have known that you can take it if it wasn’t you  

Sending you love and a virtual hug x  I will keep you in my prayers.

Blessings! 

Morning  

I had 5.5 Rai early April and stayed in 2 nights at a London hospital. 

No side effects at all . I could eat and drink ok .

Took snacks in with me, books, had previously downloaded a few things to watch on my tablet and listened to hospital radio, even had my request played !

Still feeling well and thankful for all the treatment I have done far received.

I really hope Yr treatment goes well x

Hi Nevs25

It is good to hear you had no issues with RAI and that you are still feeling well. 
Thank you for sharing your experience.

Best wishes x

Hi MCG, 

Apologies as I can’t say what my doses were. (Can’t remember) I be had RAI twice now, once dose was bigger than the other I know. 
The first time I was in the hospital for just over a week and isolated at home for an additional week. The second time I was only in hospital 3 days and isolated at home for 2 weeks as extra precaution as my wife was trying to get pregnant. Wanted to ensure she was safe. 

I won’t sugar coat it, the first time my symptoms were awful on the immediate front. I had extreme nausea, was throwing up for days on end, headache from hell, I had very bad neck pain, brain fog and fatigue, also everything I ate tasted of metal. Nothing really helped that, just something I had to deal with. 

but… the second time I just had some nausea and slept a LOT. So defo a better experience (I’m sure having a large dose first time around made me worse) 

After my second dose the worst thing since has been it’s absolutely killed my salvation glands. They’re permanently damaged now, which according to my doctor isn’t common long term, but it does happen. 

The hospital stay and isolation is honestly probably the worst, depending on how you deal with being alone. The hospital put a piece of tape on the floor and whoever visited was not allowed to cross it, so you can have visitors; they just can’t touch you, which can be hard if you’re feeling unwell, crying etc; because all we want at that point is for someone to hold us. I brought anything I could to keep me entertained. Movies downloaded to a tablet, colouring books, books, knitting (literally bring anything you can think of)! It helps. Call people daily and chat, it helps so much. 

Bring comforts, your own pillow, blanket etc. I also recommend bringing some sour sweets to suck on to help keep your salivary glands working well. 

When I got home isolation was much the same, but obviously much better as it’s your comfort space. stayed away from anyone in the house, the pets, showered daily, cleaned the toilet wearing gloves every time. Just be super clean if you’re living with someone else :) 

You’re gonna do great! Like I said the biggest thing is the isolation. Being unwell sucked, but it wasn’t any different than having a bad stomach flu or something like that. Just being alone and untouched for it all was awful. Good luck to your journey, and keeping you in my thoughts