Hi there, after many months of worry i now have a date for my radiation treetment in Bordeaux, i have had a full thyroidectamy in April, i was hoping some one who has had this procedure could tell me how to prepare myself, maybe what the side effects are and long term effects.
Thank you so much
Dear Charon,
I had a total thyroidectomy in March this year followed by radioactive iodine in May also for cancer of the thyroid. In order for the radioactive iodine to be effective you have to follow a low iodine diet for at least 2 weeks to deplete any natural stores in the body. There is lots of info/recipes on the internet but it is an effort. The doctors then also have to make you deliberately hypothyroid to raise your TSH so any rogue thyroid cancer cells wil take up the radioactive iodine and destroy themselves. There are 2 ways to achieve this either by withholding levothyroxine or liothyronine or by an injection with artificially stimulates TSH production. I had to have withdrawal of medication as the injection was not licenced in my trust. The severe hypothyroid was extremely unpleasant I had severe brain fog and was unable to drive for 10 days. If you have the option choose the injection!
It would also be worth preparing meals in advance and freezing them as you will be very tired
After treatment I had some minor soreness in my throat and disordered taste which is only now resolving. The segregation from people in the first 10 to 14 days was quite isolating and I was still very tired. It took several weeks to recover from the hypothyroid state and from fatigue from the radioactive iodine. Try not to do anything that needs intense concentration at least in the first 2 weeks and take up any offers of help from friends or family. If you have young children either they or you will have to be apart for at least 14 days.
I wish you well in your treatment, it does improve it just takes longer than we wish.
Good luck
Chris
Thanks Chris, there is a lot of useful information for me, i must admit the isolation scares the hell out of me,
I have had offers from people offering to help,but i was scared of contaminating them,
I live in France and feel so lost, the care i am receiving is excellent, but a lot does get lost in translation, i havent been told about a low iodine diet, i will check this on my next appointment. i am to have the injections before treatment, so thanks for explaning that to me. I dread going back to the awful side effects of thyroid problems, i never thought i would ever feel normal again. How areyou feeling now? has it taken you long to get back to feeling anyway normal?
Good luck Chris and hope all health problems are behind you.
Charon, Cjrsquared has covered most of it. I had to stop Levothyroxine for 4 weeks and was prescribed Liothyronine (T3) for 2 weeks but was off meds for two weeks. TSH needs to rise >30 to take up the RAI. I didn't follow a low iodine diet as such, just eschewed fish for 2 weeks prior.
Take old nightwear and a pair of flip flops and disposable toothbrush as I was asked to 'bin' mine or collect them in 6 months when they were decontaminated. I was allowed to use and keep hairbrush, mobile phone, tablet and books.
Drinking plenty of fluids and taking frequent showers helps eliminate the radioactivity and will shorten your isolation stay in the hospital. Take boiled sweets, sour tasting, to stimulate saliva in case of dryness which usually resolves in a few days/weeks.
You'll be given a list of restrictions which are usually to avoid close contact with pregnant women and under 18s for 3/4 weeks, avoid dentist, hairdresser, pubs, restaurants. cinema and public transport for 2 weeks and use separate cutlery and crockery and wash separately from others and don't prepare food for others for two weeks.
I didn't have any unpleasant side effects.
Thanks clutter, i did wonder if i was to recieved night clothes from the hospital, did you have to take in your own towels?
Did you follow a diet while in the hospital?
Im so pleased that you didnt have any side effects, it comforts me to know i may come out of this problem free.
Hope all is well with you now.
Charon, towels were provided by the hospital but it's worth checking in case it's different at yours.
The low iodine diet continues until you've had the gamma scan just before you leave the hospital I think. I was looking forward to paella as soon as I left hospital 
I had a lower dose of RAI 5 months later for a whole body scan just to check if there was any iodine uptake. This was 2 years ago and I have had some intermittent night time mouth dryness which may or may not be connected with RAI as I had blocked saliva glands and a saliva gland abcess some years ago and I also have intermittent taste disorder which may or may not be related to RAI as other hypothyroid patients sometimes experience this.
Thyroglobulin and thyroglobulin antibodies have been undetectable for two years so it is unlikely that there are any thyroid cell remnants which means cancer recurrence is unlikely.
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