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Hi been to see endo doctor today he cut carbinmazole down to 5mg instead of 10 mg and if still good in 3 months can stop taking carbinmazole 

he advised me 12 months ago to have RAI which I had no intension of doing as I have never had any side effects from carbinmazole in fact I did

not know I had hyperthyroidism only by chance they found it in beginning I was on 20 mg of carbinmazole so glad I did not have the RAI which is what he advised he actually said it would not improve but I refused to have

I have been taking 1000mg of Acetyl-l-carnitine   B12 1000  vitamin D 500 and I am convinced this is what has done it my Ft4 is 12.6 and my Tsh is 2.2 which he says is good dont know anything about levels                          I just wanted to tell people dont rush into RAI I was first diagnosed 18 months ago sometimes it takes a long time to improve 

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  • Posted

    Hi Patricia,

    That's really good news!  I'm also still reducing my dose of carbimazole - am now on 5mg every other day and hoping also to get off it soon.  I was quite lucky in that no-one has suggested me having RAI yet.  Whether that will change if the condition comes back I don't know yet.  I've also been taking L-carnitine but am starting to reduce that as well, hoping to get off everything very soon.  Good luck with the next few months.

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  • Posted

    Hi Patricia

    I did not want RAI or surgery and I knew this from when I was first diagnosed. However, for 2 years I was on 10 mg of methimazole and my T3 and T4 levels normalized right away in the middler of the normal range. However, my TSH stayed at less than 0.01 for 2 years. Then I added the Acetyl-L-Carnitine and my TSH rose to 2.4 and my T3 and T4 have dropped to the lower end of the normal range. I am convinced that I would still have a TSH of less than 0.01 had I not added the Acetyl-L-Carnitine. However, I had to decrease the Carnitine and now I am off of it and my Methimazole dose is 2.5 mg daily. Hope to be off of that come November when I see my Endocrinologist as well. I think the Carnitines really help but require dose adjustments along the way as well as dose adjustments of Methimazole

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    • Posted

      Hi Linda my endo in uk says normal levels should be ft4 between 12-22 mine is 12.6 and tsh between 0.27-4.2 mine is 2.2 he has never tested for t3 I dont know why but should I cut down on the acetyl-l-carnitine I take a 1000 a day and how can iI improve my ft4 or is it okay dont know nothing about these levels
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    • Posted

      Hi Patricia

      It is always a good idea to ask for a paper copy of your results. They show your result and beside that they show the range for normal. And if you keep a file of your copies, you can see patterns and how the drugs and supplements affect them. Your T4 is right at the lower end of the scale as mine is. Your TSH is in the middle of the scale. I would discontinue the Acetyl-L-carnitine for now so your T4 level can come up a bit. See where your levels are at when you next get tested. If not where you want them, you can always restart the Acetyl-L-Carnitine at that time.

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  • Posted

    I have also just come off Carbimazole and levothyroxine after 18 months - going to see how I get on and hoping I don't have a relapse.  It is so wonderful not to take lots of tablets.   Will have a blood test in a few weeks to see how I am going. 
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    • Posted

      Hi Linda, yes it was.  I started on Carbimazole and the had too much so went hypo last September and have been on 40 mg Carbimazole and 100mg levothyroxine ever since along with propananol - stopped them all last Thursday - feel like I am getting some control over my life again. I am taking it easy and trying to stay stress free to give myself the best chance, still feel very tired, but feel I have turned a corner.
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    • Posted

      Thanks Linda.  My original readings were super high so I do have an increased chance of it returning - at least I know what I am dealing with next time.  Will let you know how I get on. If you don't hear from me the news will obviously be good!  X

       

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