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Treatment advice

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amanda85576
amanda85576

I was diagnosed with Graves' disease in 2008 and then started a course of block and replace for the next 18 months. All levels and weight returned to normal. Started feeling hyper again in March this year and have again started carbimazole (currently) 40mg. I'm due to see endocrinologist next week. I'm not keen on having the radioactive iodine treatment. I refused it last time due to the fact my children were infants and it wasn't practical. I'm concerned that this time they may say it's my only choice of treatment. My levels are still not within normal parameters despite 9 weeks on carbimazole. Anyone ever had their hyperthyroidism return after initial treatment and if so what course of action did you take? Maybe I'm being wrong about the RAI treatment but I don't want any radioactive anything in my body and vainly perhaps I don't want to be made hypo just because docs supposedly find it easier to control! Advice please. 

0 likes, 10 replies

10 Replies

  • lally678
    lally678 amanda85576

    Posted

    Hi.

    I was on carbimazole from May last year through till Jan this year and it never really brought my levels down, i was on 80mgs at one point.

    I refused RAI for all the same reasons as you, mainly because i have 4 children under 10. I opted for surgery and had a total thyroidectomy at the end of january. 4 months on and i have never looked back, i feel back to my old self, my scar is fading fast and despite what i have heard my weight has never changed. I am on thyroxinne and my last results were all in normal limits. I know its not for everyone and its a personal choice but i feel great now and i know that its not going to come back. 

    • amanda85576
      amanda85576 lally678

      Posted

      Thanks lally. Something else to consider. My mum had a thyroid removal when she was in her 30's and was always slim. Unfortunately she died when 15 years ago so can't ask her advice! 
  • linda187
    linda187 amanda85576

    Posted

    I have posted here on this board many times before about adding Acetyl-L-Carnitine or regular L-Carnitine to your treatment regimen.  Carnitine is an amino acid that is naturally found in the body but gets depleted from your muscles when you get Graves disease.  Adding it back in helps to get rid of your antibodies and restores something that is lost in the body.  Most doctors don't know and don't want to learn about this but there was a valid research study done on it in Italy by Dr. Salvatore Benvenga.  You can Google his name and find his paper.  Even if you have RAI, you will not replace the lost Carnitine.  Also many many people do not feel good on synthetic T4 thyroid hormone replacement like Synthroid. 
    • mymalo
      mymalo linda187

      Posted

      Hi Linda, I really want to try the Acetyl L Carnitine as my TRABS are very high & doc has said I should have my thyroid removed. I keep looking for Acetyl L Carnitine but all I can find in Holland & Barrat are 'N - Acetyl L Carnitine Capsules 500mg' (this one has an 'n' at the beginning, on the bottle: n-Acetyl but I don't know what the 'n' means?) or l-carnitine Caplets 500mg, Which one is best, and what does the 'N' mean? If these are right,is 500mg a day the best dosage? Thanks for any help!
    • linda187
      linda187 mymalo

      Posted

      Hi

      I started on regular L-Carnitine and my TSH rose from less than 0.01 to .05.  I took regular caplets initially in a dose of 500 mg.  Then I took increased doses up to 3,000 mg.  I then combined regular L-carnitine liquid prescription and regular tabs and Acetyl-L-carnitine capsules and it was the Acetyl-L-Carnitine that really drove my TSH up to 0.78.  The N- in front of it stands for ester acetyl-L-carnitine and is used for the brand name of ALCAR which I understand in England is sold by prescription (might also be available in health food stores).  I think you have to see what works best for you.  In doses under 3,000 mg it is safe, according to my doctor.  However, at the higher doses of 3,000 mg people report stomach acidity.  I find the Acetyl absorbs better.  I take no more than 1,000 mg of the Aceyl-L-carnitine currently.  500 mg is a good dose to start on and see how you feel.  I wouldn't worry about the N in front of it.  It is a good brand.

    • mymalo
      mymalo linda187

      Posted

      Thanks, yes I can get both from the health store without prescription. I'll start with the Acetyl L carnitine (now I know what the N stands for) at 500mg and see how I get on. It'll be interesting to see what my results will be when I go back to endo in September & if it's made any difference. My T3 & T4 were almost at normal level last visit but my TSH was still less than 0.01, but he said my TRABS at 18.9 were way too high & were causing the problem for me & it would never improve, so said I had option of RAI or thyroidectomy (he'd prefer thyroidectomy), would be great if the acetyl l carnitine works so I can avoid both options. Thanks for your help!
    • linda187
      linda187 mymalo

      Posted

      Take it at the same time you take your antithyoid meds. 
    • Screwball21
      Screwball21 mymalo

      Posted

      Definitely give the acetyl Carnitine a go.  I take 1 l-Carnitine in the morning and 1 n-acetyl-Carnitine in the evening (both purchased from holland and Barrett) and I feel tons better.  You have nothing to lose by trying it.  My Endo had never heard of it, but said that if I thought it made me feel better then it was not as issue.  I think he probably was a case of mind over matter, but I know it has really made me feel better.  Good luck.
  • acd
    acd amanda85576

    Posted

    Hi Amanda

    I was diagnosed with Graves in about 2007 and after some issues with medication I left myself untreated until last year when I developed Rheumatoid Arthritis & really went down hill & spent a few months very ill.  I will never know if the arthritis would have developed anyway or if it was only as a result of me leaving the Graves disease untreated.

    So last year I decided I definitely did not want RAI and thought surgery was a preferred option however, a few days before the operation I discovered lots of information that made me have second thoughts.  I never knew the body has an ability to heal itself if you give it the right nutrition & remove toxins.  So I personally have opted to try the alternative route and am trying to get my body to heal.  I am not saying this is what everyone should do it is just the route I have chosen.  

    It is certainly not easy, requiring a radical change of diet but for the time being I am sticking with it and still believe it is the right thing for me.

    I would recommend you try to research as much as possible before you decide which way to go.

    If alternative treatment interests you I recommend watching the following documentaries :-

    Food Matters

    Hungry for Change

    Fat SIck & Nearly Dead

    Whatever route you choose I wish you well.

    Ann

  • Maggs53
    Maggs53 amanda85576

    Posted

    Hi, I was diagnosed with over active thyroid known as Graves' disease in 2006 and like yourself was on block and replace for 18 months. Then all went back to normal. I was taken off the medication and 18 months later in 2009 I was again diagnosed with it. I took the choice of the radioactive treatment (which is one pill) as did not want to go down the route of surgery. I have been on thyroxine ever since and will be for life - the good thing is that  if you are a thyroid sufferer medication is free on the NHS just need a card to show to the chemist. I have been absolutely fine ever since.
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