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Radioactive iodine

Posted , 6 users are following.

sambaines16
sambaines16

Finally made my decision and I am due to take the radioactive iodine on the 10th of April! I am fully prepared and have researched both that and surgery but would be lying if i said I wasn't terrified 🙈 has many others taken the iodine rather than the surgery? My biggest concern is not being able to see my son for 16 days as he is under 5.

0 likes, 12 replies

12 Replies

  • linda187
    linda187 sambaines16

    Posted

    Radioactive iodine is not going to get rid of the antibodies that are attacking your thyroid so what will they attack after you have had RAI?  Also thyroid eye disease (TED) is known to happen after RAI even if you don't have it now.  My sister in law had it done and while she felt immense relief after it was done because her heart rate was no longer abnormal, she said you never feel normal afterwards. 
    • sambaines16
      sambaines16 linda187

      Posted

      Well the iodine should burn out my thyroid so I will be taking levothyroxine instead to produce the hormone instead of my carbimazole to dampen it down. I think because the high risk of it coming back due to my dad's history they are more than happy to do this and I feel it is alot less invasive and risky than the surgery. I know there's the chance for the first 6 months of eye thyroid disease but now I am showing no signs of it and it is more common in men and smokers although I will be closely monitored as my dad had eye thyroid disease. I've spoke to a few people who have taken it n they have been fine and jusy take the thyroxine now. And some with the surgery I just think it's way too much, too invasive and tbh feel to young to have a big scar on my neck. X
    • linda187
      linda187 sambaines16

      Posted

      There is a lday who made a film about this.  It's called Sick2death.  You can google it.  The levothyroxine did not make her feel good afterwards.
    • sambaines16
      sambaines16 linda187

      Posted

      I will give it a watch thanks, my dad took the thyroxine for over 40 years with no hassle and I also know people who have taking it long term with no side effects I'm at the stage it can't be any worse than the carbimazole anyways. That affects my breathing and everything. I know it's not all going to go away over night but I want to be in control of my own body as much as possible and on carbimazole I'm not, I can't eat cretains things, can't get pregnant etc I know it will take a while afterwards to get a balance again but to me underactive and taking thyroxine is better than the over active. We genuinely had no idea it was a genetic condition before my dad passed away it would be good if he was here for advice though lol x
  • Sue1247
    Sue1247 sambaines16

    Posted

    Good for you.  I'm pleased to hear you have reached a decision as there are so many negative comments about it.  I know that Graves can be helped with diet changes but I'm not prepared to have it flare up again every time I have some stress, as we all do. I'm going to have RAI too as soon I'm stabilised after the third flare up.   It is easier to treat an underactive thyroid with thyroxine than have to take the drugs with side effects, like carbimazole.  I'll have surgery if it doesn't work for me. 

    I'll be nervous too but a small price to pay for less worry.  Eye disease is rare and most people are really helped by the treatment. 

    • sambaines16
      sambaines16 Sue1247

      Posted

      I have I feel like I have done all the research I can and to me the positives out weight the negatives especially with the side effects am having too. My consultant is more than happy for me to take it because my young age and incase I decide to have more children. It does scare me but I feel as well informed as can be and think the same if the iodine doesn't work I will then take surgery. My dad took the surgery over 40 years ago and researching it to me is still as extreme as then. With the high chance of it coming back with just treating with medication id rather get rid once and for all and to me this is easiest way x
  • Sue1247
    Sue1247 sambaines16

    Posted

    I agree and I don't want to live the rest of my life waiting for it to come back.  It isn't that easy to realise it has returned either and the latest event I blamed on a bad cold but when I reralised I was getting the palpitations, muscle pain etc I had a blood test.    I also know may people who have had it all their lives and been taking thyroxine successfully.  Your mental attitude will have a lot to do with your recovery so go into it positively and you will be fine and free to forget about it.  I was fortunate and mine didn't really get bad until I was in my 60's but I think I've had a mild form of it all my life.  ISo get the RAI and put it all behine you.  There are worse things than having to take a tablet each day. 
    • sambaines16
      sambaines16 Sue1247

      Posted

      Well I think with my dad's history too it's reflecting alot on my decision I have also spent the last year before being treated for pre cancerous smears and am at the end of my tether with hospitals so want as normal a life as I can. It's the no seeing my son or other half will get me.. However positive mental attitude I am hoping to gut my house and redecorate my bathroom and kitchen while I can't see them 😂👌 every cloud and all that. I'm not willing to keep taking medication on top of medication I'm at the point of taking 8 tablets easy a day I want to move forward and know this can't keep coming back etc x
  • AgW
    AgW sambaines16

    Posted

    Hi

    I had RAI in August 2012 and have not regretted it. I was allergic to carbimazole and didn't want to take PTU for any longer than I had to because of known side effects. Just swallowed a capsule, went home on bus and that was it. Avoided close contact with anyone for a few days. Took a while to get the correct dose of levothyroxine but have been stable for well over 2 years now.  So nothing to worry about except remembering to take the tablets. I put them ready at bedtime and take as soon as I wake up then leave at least 45 mins before I have breakfast. Go ahead!

    AgW

    • sambaines16
      sambaines16 AgW

      Posted

      Well the hospital have given me deadlines for people to be around me close contact is fine for short periods of time but if I can touch them they are too close. My son who's three can't live with me for 16 days so it doesn't affect him, my partner also is leaving for 11 days I'd rather be over cautious and follow their guidelines than put anyone at risk and they all have places to go which makes the decision a bit easier. I'm hopeless with remembering to take the medication but that will be my hardest thing remembering I will need to though so I will manage it! Thank you x
  • renee48912
    renee48912 sambaines16

    Posted

    My mom didn't do the iodine but had surgery 27 years ago and has taken synthroid every since and has been fine!
  • emily28486
    emily28486 sambaines16

    Posted

    FaceTime is probably best or Skype. Good luck, this is something I will maybe consider in the future please let us know how you get on. 😄
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