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Ending Carbimazole treatment

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karen0810
karen0810

I was diagnosed with Graves Disease in August last year and have been taking Carbimazole since September.  I started on 40mg and have gradually decreased my dose every few months until I am down at 5mg.  I've been at this level for two or three months now and am due to see my endocrinologist at the end of August.  Last time I saw her she suggested that, if my blood levels continue to be stable, we either reduce the dose to 2.5mg or stop it completely to see what happens.  I'm about to go through a house move which is obviously stressful and so she didn't want me to stop the medication until I'm settled which is understandable.  I really want to get off the Carbimazole but am worried about the symptoms coming back.  My endo has said that about a third of people will relapse straight away, another third will have a relapse at some point in the future and some people are fine for the rest of their lives.

 

Just wanted to know if anyone had been through this and come out the other side with any useful advice or experiences?  I've read some reports that say that most people will relapse and that RAI or surgery are the only guarantees against this but also some reports that say a healthy diet and the right natural therapies can almost completely guarantee permanent remission.   Any thoughts?

 

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  • annLW
    annLW karen0810

    Posted

    I notice this thread is over a year old but I'm just glad to find some information about something I'm currently concerened about. I was diagnosed hyperthyroid (with Graves Disease) in May 2015, was prescribed Carbimazole. My thyroid levels returned to 'normal' range within 3 months and I was taken off the Carbimazole. Thyroid levels were still stable in December but I keep reading that relapse is more or less inevitable. I did mention tapering to my nurse when she took me straight off the Carbs. I was just wondering of anyone else had been on them for such a short time, without relapsing. Thank you, Ann
    • linda187
      linda187 annLW

      Posted

      My Endocrinologist will not take his patients off meds until their antibodies are gone or of normal levels, even if their thyroid results are normal.  Also he and I both believe it is wiser to taper off.  In England though. they use the Block and Replace method of therapy whereas in North America they use the antithyroid drugs alone.
    • Sue1247
      Sue1247 linda187

      Posted

      Not all UK endos use block and replace. They certainly don't in my area.
    • Sue1247
      Sue1247 annLW

      Posted

      I think you've come off the drugs far too soon. I was told that eighteen months on carbimazole was required. It may well come back so make sure you get a blood test in a few months. Everyone is different and you may be lucky and have no reoccurence. Mine has come back four times now and I'm going to have a thyroidectomy. I've had enough of it.
    • annLW
      annLW Sue1247

      Posted

      I'm in the UK. I'll be due blood tests in June, but will keep an eye on how I feel till then.
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