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I have Graves and need to decide on treatment - Rai etc.

Posted , 5 users are following.

vicky46982
vicky46982

I was diagnosed with Graves around three years ago and have had one relapse so fa. My endocrinoligist is pressuring me (I think) into having Rai or thyroidectomy but I'd rather not do either. I respond well to Carbimazole and can cope on these meds so don't like the unknown of having the treatment. Has anyone refused treatment other than carbimazole and had a successful outcome?

0 likes, 15 replies

15 Replies

  • Sue1247
    Sue1247 vicky46982

    Posted

    I'm Graves too Vicky.  I'm going to stay on carbimazole until I go into remission again.and won't be having radioactive iodine or removal of the gland.  I have other auto immune issues that lead me to make the decision but if you respond well to carbimazole, as I do, then why have something more invasive that cannot be reversed.
    • vicky46982
      vicky46982 Sue1247

      Posted

      Hi Sue, thanks for the reply! How long have you been on carbimazole? Do the doctors say that you can't be on it for too long due to the dangerous side effects? I'm getting that kind of message but worry that the main issue is cost and that getting me onto thyroxine is the cheapest option.
    • Sue1247
      Sue1247 vicky46982

      Posted

      I went on it in 2009.  After 18 months I stabilised and came off it until last March when I got sepsis as the infection and stress brought it back-this time much worse and I had to take 20mg a day and beta blockers.  But I responded very quickly and then was hypo for a while.  Due to another bout of illness I missed my appointment and blood test and currently taking just 5mg a day but that may be adjusted.  They can't make you have invasive treatment so stick to your guns.  I've never heard about dangerous side effects....such as? I was told I could just take it when I went over active.  
    • vicky46982
      vicky46982 Sue1247

      Posted

      So how long were you off it? I only lasted about 9 months until I relapsed - endo suggested I never got my levels good enough so that was the reason and it was inevitable that I relapse. He now says most people wont fix graces with drugs if they've had one relapse so I need to have Rai etc. carbimazole has a tiny chance of causing a thyroid storm as far as I understand - you need to get a full blood count straight away if you get a sore throat.
  • linda187
    linda187 vicky46982

    Posted

    I have emphatically stated to my Endocrinologist that I will not have RAI or surgery.  I have had great success by adding L-Carnitine and Acetyl-L-Carnitine to my treatment regimen.  Graves patients lose Carnitine (an amino acid) from their muscles and urine and this needs to be replaced.  I and others have been able to lower the dose of Methimazole after adding L-Carntiine.  In addition, my antibodies are gone and my blood values are normal now.
    • Sue1247
      Sue1247 linda187

      Posted

      I'd like to try the cartinine Linda but have had really bad palpitations with my Graves and nervous about taking it.  Have you experienced any heart issues with it?
    • linda187
      linda187 Sue1247

      Posted

      I did not experience any ill effects when I took regular L-Carnitine and at first when I took Acetyl-L-Carnitine.  I take it with my prescribed meds.  More recently when my blood levels all became normal, I experience rapid heartbeat with the acetyl-L-carnitine but not with the regular L-Carnitine.
    • linda187
      linda187 Sue1247

      Posted

      Yes I had my Total Carnitine and Free Carnitine tested because I wanted to know what my level was before I started taking the supplement.  I was carnitine-deficient when I started.  I have been tested twice since and I am in the middle of the range for both tests so I am good there.
  • Sue1247
    Sue1247 vicky46982

    Posted

    I was clear from December 2010 until March 2013.  I'm convinced it would have stayed away longer had I not had the health issues that are known to cause it.  I'm nit having RAI as I have Sjogrens or surgery advice had enough if that for a while.  Have you tried immune support supplements. It is an auto immune condition.   I take Simba that is very helpful.  I've never heard of a thyroid storm.  The only serious side effect of carbimazole I've heard of is an issue with the blood count of white cells and this is quite rare and usually occurs at the beginning of treatment.  I'm not being pressured to have invasive treatment and feel mine will stabilise again.  I see it as annoying but treatable although I appreciate everyone is affected differently.  
  • Sue1247
    Sue1247 vicky46982

    Posted

    Vicky I've just looked up thyroid storm.  It's nothing to do with carbimazole and occurs when it goes untreated.  My advice would be to see how you go for a while longer.  You don't say what dose of carbimazole you are on.  If it's low you may relapse for longer next time.  Was it a period of stress or another illness that brought it back?  
    • vicky46982
      vicky46982 Sue1247

      Posted

      Hi Sue, yes I think I've read that the blood count issue can cause a thyroid storm but it's very rare. I don't really know what caused it to come back other than the endo saying that I hadn't taken enough carbimazole to get one of my levels out of the red zone but the others were normal so he said I could stop taking it. I have always been paranoid about putting on weight through taking the medication (I'm 7.5 stone and 5ft 2 and have only fluctuated down to around 7 stone on first diagnosis) which I know is stupid but I'm a control freak so this illness is not too conducive to that personality type! Initially, I think it was either the stress around getting married, a really bad stomach bug or coming off the pill that triggered it. None of those things happened the second time round so I'm none the wiser. I think I'll say to the doctor that I want to get all my levels normal through taking carbimazole and then see if it comes back. I'll also look into boosting my immune system like you advise as I haven't done that as yet. Thanks again for the advice!
  • Sue1247
    Sue1247 vicky46982

    Posted

    I understand that your blood levels have to be normal for 6 months before they think you are in remission again.  I lose weight quickly too but it's better than putting it on.  I agree that's it's best to get back to 'normal' and work on your general health and fitness.  The immune system is a strange thing and I have other issues like Lupus, Sjogrens syndrome and Raynauds.  Do keep an eye on your general health as if you get one auto immune thing you may well get another, particularly as you get older.  Take care of yourself. 
  • stefania3
    stefania3 vicky46982

    Posted

    Hello Vicky,

    I refused RAI and am on block and replace for the second time round.  I seem to be able to tolerate the neomercazole (carbimazole) whereas some can't.  However, this time I have - to my mind - gone slightly to hypo, as I've put on more weight and can't seem to shift it.  I'm not sure how long I'll have to be on it this time, but I refuse RAI.  Another thing that concerns me, is the recent article I read about aspartame possibly triggering Graves.  Now, I checked my medicines and guess what: my new calcium supplement contains aspartame!!!

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