I had a total remover of my thyroid in may and I was told to go for RAI do you think it is necessary to have the RAI because I am afraid of the side effect but the consultant confirm that they were able to remove all that they saw on scan but if so is there any need for the RAI ?

  • If the doctors offer RAI, it's because they think it's needed.
    In these troubled times with massive waiting lists and not enough facilities, you won't be offered anything that isn't needed.

    So my vote is to do it.

    And my recommendation is to steer clear of sites that talk about RAI side effects unless you can guarantee that they relate only to the current small dose RAI which has become the norm.

    Side effects mostly happen with repeated, high-dose RAI.

    Best wishes


    “Scars are tattoos with better stories.” – Anonymous

  • Hi. In most cases (the nurse yesterday told me in all cases) there will be some thyroid tissue left after the surgery. It's not possible to remove 100% of it hence RAI. 

    It is your decision what to do about it.

    I am always going with what doctors are advising. 

    Take care.

  • I had my total removal last Wednesday and back home Saturday. My consultant has said I'll get RAI in 2 to 3 months. The removed thyroid will be dissected and analysed. I had papillary cancer cells creating a lump in the right side.

  • Did everything go straightforward for you @CanaryN I am asking as I am waiting for my operation date and had my pre assessment last Wednesday.   Feeling very nervous.  I am also having a full thyroidectomy and dissection on right side.  Good to hear you are home and best wishes for your recovery.

  • Hi Petal.

    Yes my operation was probably about 4 hours. I remember being wheeled on bed into anesthesia room at about 11.30am and next thing I was waking up hours later so it's probably more stressful for relatives.

    I had a drain bottle and tube coming out from under the wound to collect liquid after the operation. Consultant saw me wake up said everything straight forward.

    Then wheeled onto a ward of 6 men. Lots of pain relief available I had a lot of sickness on the morning after the operation bur a drip of antisickness soon stopped this. My diet in hospital was ready brek, tomato soup and ice cream but now back home getting back slowly to more solid food.

    My little drain bottle was awkward but I went for short walk around the hospital floor where my ward was on morning after operation. The drain bottle was monitored daily and by Saturday morning it hadn't gone up much from previous day. My calcium level was good so sent home with lots of medication etc.

    Got follow up in clinic in about 2 weeks and will have radioactive iodine in 2 to 3 months.

    Very emotional at the moment but it's a release of pent-up anxiety after the diagnosis about 8 weeks ago.

    All the best

  • So pleased to hear you are doing well @CanaryN and I can understand the emotion, I am the same now and will no doubt be emotional afterwards, it's been 8 weeks since my first doctor's appointment when all this started when I was referred to the hospital, and it does get to you and the anticipation of the surgery going well too.  My diagnoses was only on 9th June so not that long ago.  Take care of yourself and I am sure your relatives are very happy that you are home now, I know mine are going to have an awful day especially bearing in mind the length of the surgery, I have been told anywhere between 5/7 hours.  I thought it was only going to be a couple of hours at the most, so was a bit surprised.

  • We had a holiday in Lake District in June one week before operation where we walked about 5 miles a day and was very relaxing. So I felt that I was very fit prior to operation. Fitter you get the better before general anaesthetic.

  • Would love a holiday but no chance at the moment, lost our car earlier this year and hubby not up to walking much at present, but I do walk more with not having the car, although not been out much recently.  I was told to ensure I was hydrated too which helps and helps you to recover quicker if you are.  Just wondering how that will pan out as I was told at the pre assessment I have to be at the hospital by 7.30 am and we live 60 miles away, so will be getting help with transport from TASL.  They say they pick you up 2 hours prior to your appointment, so that would be 5.30 am, and I think the nurse said nothing to drink or eat after 6 am.  Looks like I will be up all night trying to drink as much water as possible and sitting cross legged all the way there.  On the positive side I will be having a long sleep under anaesthetic.  

  • Yes no solid food after previous evening, I was given a fasting leaflet. But just had water at about 5am.