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I have overactive thyroid

Posted , 5 users are following.

patricia36232
patricia36232

my endocologist wants me to have radioiodine treatment but I don't I have been on carbinmazole

for 14 months but my endocologist wanted me to have radioiodine treat ment 8 months ago

I started on 20 mg but am now on 10mgI have no symptons no side effects no weight loss or

gain infact they only found out I had it when I went for rheumatoid arthritis blood test because

my mother and sister had r/arthritis but I have not got r/a what I want to know why cant I stay on carbinmazole for at least 2 yrs or longer as I feel so well I feel he is rushing me

1 like, 16 replies

16 Replies

  • Screwball21
    Screwball21 patricia36232

    Posted

    Don't be rushed into it as you may go into remission yet.  I was told that you can stay on carbimazole indefinitely now if you have no side effects.  Once you have RAI there is no going back.  Stick to your guns and try and find out why your Endo is so keen when you feel so well.  I too am hyper and I feel absolutely fine so have no intention of having RAI unless something changes and I become I'll again.
    • patricia36232
      patricia36232 Screwball21

      Posted

      THANKYOU FOR REPLY I FEEL BETTER ABOUT IT NOW AS I FELT I WOULD BE THE ONLY ONE- AS MOST PEOPLE ARE NOT GREAT ON CARBIMAZOLE AND I FEEL THE SAME AS YOU IF I GET ILL I

      WILL HAVE IT THANKS AGAIN

  • tennab
    tennab patricia36232

    Posted

    I was told that I could not stay on cabimazole for too long... 
  • jane32290
    jane32290 patricia36232

    Posted

    Hi Pat

    I can fully empathise with how you are feeling. I too feel like my endo is trying to push me into rai in spite of telling him I don't want it. I am on 5mg carb now and feel ok. Am back at hosp in july for blood test check up and will refuse RAI again and hope that he doessn't try to bully me like last time. Don't know about staying on carb indef . I went underactive when on 20mg and was put down to 5mg Have to stay on this till next visit . Still don't understand why they want to kill off thyroid when it is only dysfunctional because being attacked by immune system. Why don't they treat the cause and not the symptoms. Might give that L cartenine a try .There must be some other way of sorting prob out other than RAI .

  • linnet2012
    linnet2012 patricia36232

    Posted

    Biggest risk with carb is first 3 months. In Europe people stay on it for years. Good chance you will go into remission after a couple of years. RAI is a big step, if your treatment is working don't be pushed into it. Might not be simple to get your thyroxine levels right. Stand your ground !!
    • linda187
      linda187 linnet2012

      Posted

      I can't stress enough the importance of taking L-Carnitine or Acetyl-L-Carnitine.  Your blood values will normalize and you will be replacing the carnitine lost in your muscles by this illness.  Also your antibodies will disappear.  Your doctor won't know about this or endorse it.

       

    • patricia36232
      patricia36232 linda187

      Posted

      Hi Linda do you take above tabs and if you do what are they for and are they safe with overactive thyroid I live in UK but have not heared of these

      tablets or powder thanks

       

    • linda187
      linda187 patricia36232

      Posted

      I have taken both regular L-Carnitine and Acetyl-L-Carnitine.  You can find them in health food stores.  The acetyl-L-carnitine worked the best for me although the regular did start my recovery by moving my TSH value upward.  This is an amino acid that is normally found in the body that gets depleted with hyperthyroidism.  Google the article by Dr. Salvatore Benvenga on L-carnitine and hyperthyroidism.  Other natural remedies helpful to hyperthyroidism are Melissa and Bugleweed but I personally have not taken those.

       

    • linda187
      linda187 patricia36232

      Posted

      My boss, a metabolic specialist, told me that in doses of up to 3,000 mg L-carnitine  is quite safe to take and won't hurt you.

       

    • linda187
      linda187 patricia36232

      Posted

      I should add that you take the L-carnitine with your prescribed med, not instead of it.  As your values improve, you work with your doctor to lower your prescribed med.

       

    • patricia36232
      patricia36232 linda187

      Posted

      Thanks Linda Ithink i will try these they cant do no harm and who knows they might work

       

    • Screwball21
      Screwball21 patricia36232

      Posted

      I can highly recommend the use of the acetyl carnitine and l-carnitine . I have been taking a mix of both now for several weeks and feel really good. You can buy the l-carnitine in store at Holland and Barrett but they generally have to order in the acetyl carnitine. I can hardly believe how much better I feel since taking them. Good luck. Tracy
    • Screwball21
      Screwball21 tennab

      Posted

      I used to feel a bit crumby in the evenings and got that hyper fidgety feeling, but since taking the Carnitine mix I just feel so much better.  I also seem to have a lot more 'healthy' energy and have been cycling up to 70 miles a week.  Last July I could barely carry a bag of shopping let alone go cycling, so all in all, I feel pretty fit and healthy.  Got an Endo appointment on Friday sonitvwill be interesting to see what he has to say.
    • tennab
      tennab Screwball21

      Posted

      Thank you for that, I feel really grumpy and I get upset and annoyed at the drop of a hat. That is not like me! Thank you do much. I've been tying to exercise to get the weight off but I struggle with it. I look forward to having more energy. smile
    • Screwball21
      Screwball21 tennab

      Posted

      Well you have certainly got nothing to lose by trying the carnitines.  It will take a couple of weeks to get into your system of course, but stick with it and I am quite convinced it will help the nasty side effects of hyperthyroidism.

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