I am due to have Rai treatment soon can anyone tell me what to expect afterwards please

[triciamary]

[GiGiPen]

I had RAI three years ago following surgery for thyroid cancer. I felt fine all the way through, apart from a slightly upset tummy due to eating too many boiled sweets! A full body scan was carried out before I left hospital, I then had to keep away from children for a few days. I was recommended to have thyrogen injections before the treatment so I did not have to come off thyroxine for two weeks. Glad I did as it was a breeze! Good luck, it's nothing to worry about.

[triciamary in reply to GiGiPen]

Thank you it's good to hear someone positive about this treatment.

[triciamary in reply to GiGiPen]

Hi GiGiPen

Was also wondering if you had problems keeping weight off after as I am having it because of a nodule on my thyroid which made me overactive. As I understand it I will be under active afterwards and will have to go on thyroxine for life but hear many bad reports as to not getting the dosage right causing weight problems. I have always had to keep an eye on my weight and don't want it to become a problem.

[juliaheppers]

Hia

I had RAI to blitz some lumps/ nodules that the endo said would never go away at the time was marginally overactive

The procedure is different in different areas and for why the RAI is needed in the first place

Your hospital should of given you a procedure leaflet explaining everything

But ask as many questions as possible go on google and find out everything

I am not going to tell u it's nothing to worry about but I'm also not going to scare you with my story as everyone is different and deals with this differently

Sorry to sound so horrible but I am now nearly 3 years after and very under active

So please please please find out as much info as possible

I also had to have 3 weeks off work due to radiation this may be different for you

I am really rubbish at cutting and pasting links sorry x

But I have put radio iodine aftercare in search engine and that comes up with loads of information

Your hospital website should also have the leaflets on line too

If u mean after the radiation period - then you will either need another dose if it didn't do the job

Or will be under active and be on a thyroid replacement for the rest of your life

Or hopefully it will work

As I said everyone is different but get answers to all your concerns

Good luck

Kindest regards

Julia xxxx

[triciamary in reply to juliaheppers]

Thank you will definitely find more info before I have the treatment.

[Jacs]

I don't want to be unduly negative, but my daughter had this about 3 years ago, and wishes every day that she hadn't....if she had her choice she would rather be over-active and slightly unstable, than so tired and fuggy-headed that she often doesn't have the energy to get out of bed. We've also had a real fight with the NHS to get her on T3, (which has helped her greatly).

It depends why you are having this, and how bad your symptoms are now. Personally I think in many cases it is suggested by endo's because 'being under-active is easier to treat' .... we all know how true that is!!!!

[triciamary in reply to Jacs]

Hi

I am having it because of a nodule on my thyroid and can't stay on carbimazole for too long. I have been concerned as to whether I will be able to cope with being under active and on thyroxine for life. Also will it cause me to put loads of weight on.

[zeberdee2468]

I had this 30 odd years ago, 3 doses and had no side affects whatsoever. For over active thyroid conditions it is guess work as to how much RAI you need in your dose which is why occassionally you may need another dose but I felt fine afterwards ionce all the meds were at the right levels etc. Good luck.

[triciamary in reply to zeberdee2468]

Thank you so much for that it is good to hear a positive result as I have read too many unhappy outcomes and it has been worrying me.

[Orangelady1]

I had it 18 months ago, after my TT. I spent 4 days in the lead lined room in hospital, felt fine the who.e time. They came in every day and used a machine to measure the radioactivity on me. I only felt a bit sicky at times but they give you anti- sickness meds for that. Then I had a full body scan on my last day. The loneliness and boredom of being in the isolation room was the only complaint I had. Best wishes for it.

[misscliocat]

how have you been feeling?? i know is an older post but i'm quite curious.!

[triciamary in reply to misscliocat]

Thanks for your interest. I am feeling pretty good thank you. Am now underactive and on Levothyroxine but managing not to put any weight by following the 5-2 diet and making sure I keep my exercise up.

Triciamary

[Pushka]

I'm in exactly the same situation as you, overactive and nodules I'm on 5mg of carbimazole daily and they say that eventually I will have to have the radioactive treatment to kill the thyroid. I'd much rather stay as I am as I feel fine as like you have heard absolute horror stories of weight gain and lethargy after the iodine treatment

I would love it if you would stay in touch with me and let me know what you find out as I'm only a few months in to this and think I have about two years before they will make me have the procedure

Thanks

[triciamary]

Hi Pushka

I actually had the RAI treatment 2and a half years ago and have to say the treatment was no problem and I was fine for about 12 months then wasn't feeling so good and tests showed I had gone underactive so my GP started me on Levothyroxine 50mg daily and after a few weeks things settled down and I felt fine had to have dose increased last year to 75mg but am pleased to say am feeling ok and haven't put on any weight at all I do keep an eye on my weight and weigh myself once a week to keep a check on it. I only vary up or down a pound or two. I follow the 5 - 2 diet and have done for the last 3 years and this seems to work for me. I also make sure I get plenty of exercise which I feel is very important.

I like you was very worried about having to have the RAI but must say so far all has been fine so try not to worry but as I understand it you can only stay on Carbimazole for about 12 months or at least that was what I was told. So you will probably have to make a decision at some stage.

Good luck with whatever you decide.

Triciamary