p lease advisere RAI

Posted , 5 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

hello all Am new to this . I have posted under another page I need advice is the title. Bess advised me to post on here. I was diagnosed with Graves disease Nov 2010 Is there a test for this as was just told and put on Carbimazola? I am now on 5 mill and 7.50 on alternate days

I am due to visit hospital Nov 21st and on last visit doctor said may have to consider RAI . My TSH levels were 0.07 and my TS3 and TS4 were almost normal. I still feel anxiety and have panic attacks now and again . I have no lump on neck or problems with eyes. I am very worried at the thought of this treatment RAI Should I be having this treatment. Please advise.

0 likes, 6 replies

Report

6 Replies

  • Posted

    Hello Corena,

    Welcome, most of us are on graves part 4 thread. Sorry to hear youre not great at present. It's completely your call wether you have RAI but if there's a chance that you could safely be controlled without I know I wouldn't. I had it in APril this year and can state that the concept is much scarier than the reality. However it is not an exact science and going very underactive afterwards is no walk in the park. You should be told there is a big risk that might happen. My thyroid has zero output now and I take synthetic thyroxine daily but don't seem panicky these days.

    Good luck with it.

    Jane x

    Report
  • Posted

    Sorry,

    It's graves part 3 but no doubt will be 4 in due course.

    Re the test, I think they can tell from blood tests but I had die injected into my arm and a scan on my neck ad well.

    Jane

    Report
  • Posted

    Hi Corena. Welcome to the forum from me too. smile If you come over onto Graves part 4 we can all join in.

    As Jane says at the end of the day you have to decide yourself whether to go for RAI. If you go into remission you could be lucky and the Graves might not flare up again, but if this is a recurrence then there's a good chance it will recur again. I had treatment with Carbimazole 40 years ago, and I was fine until last year when I had a lot of stress and it flared up again. I was really ill and decided that RAI was the way to go. Having the treatment is no big deal, I just had to swallow a capsule. I can remember wondering what all the fuss was about. My endo put me on block and replace which means he gave me enough Carbimazole to stop my thyroid working and Thyroxine at the same which meant he could keep my thyroxine levels steady.

    After the RAI I had to go back on it as my levels went up again, but it meant I didn't go underactive. I have thyroid eye disease and going underactive would have made it worse.

    If you do have RAI it will take time before you feel ok. It's a year since I had it, and I'm feeling fine., but it's taken nearly all that time for my blood levels to become normal. I do tire easily. If I just plod along from day to day I feel fine, but yesterday we had a busy day and last night I was so tired I felt sick.

    I'm on 50 mcgs of thyroxine daily which is a low dose, so I must still be producing some thyroxine. I hope this has helped and not made you more confused. :D

    Take care,

    Marigold.

    Report
  • Posted

    Hi Corena and welcome,i had RAi in march this year i too was worried but it was okay ,no need to worry ,all the gravers on here helped each other through with it,so you wont be alone ,when the others come online Marigold Jane and KAT that have already had rai will also help so dont worry .. take care love sue xx
    Report
  • Posted

    Thank you all for your help and I know I will have support. I must have to think long and hard about having RAI. Can anyone please tell me how long people can be on Carbimazola? Just 5 and 7.5 on alternate days now.

    Thank you all again

    Report
  • Posted

    Hello Corena, I have been on Carbimazole for almost 18 months now and my GP is weaning me off it and then see what happens. I think generally 1 year to 18 months is the maximum time most people are on it, I suppose at a much higher dose, you would take it for perhaps up to a year. Others may have more info about this. I have had no problems with taking it except a bit of weight gain (at least I'm blaming it on the medication!). Hope you ok today.

    Love to all, will post again soon, in a rush as usual !

    Bess xx

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up