RAI - no more choices for me

Hi everyone. I have been battling with Graves Disease for over 2 years now. After being on Carbimazole (which didn't work for me) and PTU which worked for a year but now after recent blood tests I have gone hyperthyroid again. My endo has said really that the best thing for me is to have RAI. This disease is not going away. I have been to two endo's so have had a 2nd opinion and they both are in agreement.

I am due to have RAI next thursday. My concern is what is the best plan of action after I have had the treatment. I am really, really worried that things won't be the same afterwards. My endo is confident that he can get me back to normal.

Anyone been in the same position as me? Any advice would be greatly accepted.

Many thanks.

17 Replies

  • Yep had it years ago, no problems afterwards, went hypo within 4 weeks and much easier to manage than constant hyper relapses. You will no doubt get negative comments on here but those are from the few who weren't happy with their decision, the vast majority are well and getting on with their lives.

    Go for it, good luck.

  • Thank you so much for this. I am really pleased it went well for you. Fingers crossed that it has the same affect on me.

    Are you still on medication? If so what do you take?

  • I'm on 112.5mcg of Levo which considering I have no working thyroid is a fairly low dose but it works well for me.

  • OK - great to hear. Thanks

  • Like Bantam I didn't have any problems & was so glad I had it. Good luck Liseyloo.

  • Thank you Dusty - it is reassuring to hear this

  • why why why are they pushing RAI they should offer surgery and that would be choice of many

    when my husband was in your shoes he was told SAI is too dangerous if your under 40 and surgery is better

  • Hi reallyfedup - thanks for your comment. I am over 40 years and I had major surgery in 2012 and the Consultant has decided it is not a good idea for me opting for surgery. I agree with him in this instant. The dose of RAI isn't a high dose.

  • OK well be prepared to order NDT and self treat if Levo or T3 gets you nowhere

    Plus remind them of the very old Swedish research ( wish I could find it ) that after Graves the body is so highly sensitised to thyroid Hormone that it can never again function on "normal " levels

    You will need absolute assurance that they will not flap about suppressed TSH and T4 and T3 way at top or over the range

    I can only tell you what my husband went through

    and we have a daughter and granddaughters who are clearly now Thyroid Hormone Resistant to go with it

  • What is NDT? I looked it up and it said Non Destructive Testing?!

    So you are saying that after someone has had Graves the body can never again function on a normal level? I assume you mean someone who has had Graves and RAI. I thought that was the case. The chance of me going hypothyroid is 80-90%. My endo has assured me that he will get me to a "normal" state after treatment.

    My mother who is now 84 years old and my aunt both had their thyroids removed years ago when they were about 19 years old. Unfortunately they don't remember why. My endo has said that it is more than likely to be Graves (and I have had 2 opinions on this). It runs in the family. I believe it will probably pass on to my daughter, who is 11 years old.

    But, I will certainly take your advice and make sure we get everything just right. That is my main concern.

    Did your husband have RAI or surgery?

  • Don't assume you will pass it on to your daughter, I have 3 daughters, youngest 18, eldest nearly 30 and none of them have any thyroid problems. My sister also had Graves ( we both had it in our teens) and her 3 kids are absolutely fine as well.

    Also you can function as normal on Levo after RAI, I had it 15 odd years ago aged 45 ish, previously had partial surgery in my teens so now no thyroid at all, I function very well on a fairly low does of Levo.

    You have to do what is right for you.

  • That's good to hear - thank you. I really do hope that it isn't passed down to my daughter. I am 47 years and got it 2 years ago.

    Glad to hear you function as normal. This a great site with a lot of support. I would be lost without it.


    I do not know where your Endo is getting info to support his 80% to 90% chance of you going Hypothyroid

    Unless something has changed the Tayside Report found that after 5 years all RAI treated patients were Hypo and after 10 years all surgery treated patients are Hypo

    My husband slid into hypo pretty quickly after his surgery at age 40 but it took 6 years to finally get his then Myxodeama Madness diagnosed

    His TSH was 2.9 and his Free T4 was 19 ( 10-23 )

    He spent 12 years going nowhere on 350mcg Levothyroxine

    more years on T4 /T3 mixture

    More years on 120mcg T3 alone

    Only the last 8 years on NDT have restored his health and he is 73

    Our younger daughter and 4 of 6 grandkids all are Hashimotos Hypothyroid and only 1 of them can tolerate Levothyroxine

  • NDT is Natural Dessicated Thyroxine

  • Hi lisey loo

    I read your story and thought it was me..I was diagnosed April 2013 with Graves/Hyper. Couldn't take Carbimazole and changed to PTU. Was on that till August 2014. Had a few months before symptons started again. Though my 1st Endo disagreed my symptoms were anything to do with Thyroid. I went 6 months not bring great till had another blood test and a new Endo who agreed I was out of remission and back on PTU June last year. Since then and discussions I had choice of RAI or surgery.

    My Endo said that due to my symptoms/going Hyper so quickly that I I cldnt stay on PTU long term so had to decide. After long talk with him & my family. I opted for surgery........

    I am now home after having it on Tuesday this week recovering.

    It's a big decision to make so your decision has to be right for you. People will have their opinions but you have to make the decision for you. You have had a chat with 2 who say the same.

    I so hope that your RAI is successful and you carry on a normal life..well as normal as we are on here lol

    If you need to message me then please do. We are here to help and support you all the way

    Take care and good luck



  • Hi Snow. I've just read your story too & it is very similar! I'm glad you're out the other side, please do keep me posted.

    My RAI is Thursday - the decision has been made for me. I didn't really want to opt for surgery as I had major surgery in 2012 & had a bad reaction afterwards.

    I trust my endo & hope he can get me back to normal afterwards (whatever normal is, it's been a long time!). At least I've seen the back of PTU they tasted disgusting!!

    I do hope you're feeling well now & thanks so much for your kind message of support.


  • Hi

    Good luck Thursday and wish you the best. Glad you have a good Endo you trust, I do with my 2nd one. Some of us have bad experiences.

    I'm bearing up and taking it slowly. So far so good even with the hiccup in recovery and calcium levels droppin. But all being monitored.

    Take it easy and look after yourself


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