New To Grave's Disease diagnosed in June

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Hi, I was recently diagnosed June 1 with Graves.  TSH <.01 , T4 2.7, Total T3 281, and TSI antibodies are 325%.

My labs five weeks later:  TSH still <.01, T4 1.9 (.8-1.8 is normal) and T3 is 202 (80-200 is normal)

I read a lot online and per my Dr. I am taking 5mg methimazole once a day.  I'm also taking 3,000mg of carnitine and 500mg of acetyl carnitine daily.  (Thanks Linda for all of your post on this subject!!!)

My Dr. wants me to up my dosage to 7.5mg of methimazole daily, even though my T4 and Total T3 numbers are almost in range.  I am not doing that!  Instead I was thinking about taking an additional 500mg of acetyl carnitine daily, but am wondering if that will be too much.

Does anyone have an opinion?  My heart rate and blood pressure have normalized and my symptoms are all much better, except I'm still not really gaining weight.  I'm okay with that but my hubby isn't!

Thanks for reading.

DD

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  • Posted

    I found for myself and others that have posted to the Board that using Acetyl is a very fine balancing act.  Needs a lot of adjustments as your labs will alter very quickly.  For myself, I took 1,000 mg less of Regular L-Carnitine (so only took 2,000 mg)  and then took 1,000 mg of Acetyl.  My TSH went from basically 0 up to 0.70 when I did that.  My Frees dropped to bottom of the normal range which I was okay with as long as it did not go out of range and it never did.  With the changes in my labs, my doc would always adjust my Methimazole dosage downward.  I think you can increase the dose to 1,000 mg of Acetyl but follow it very carefully.  Also note how you feel on it and if you don't feel good on it, then you can lower it back.   For myself, I was becoming very sensitive to sounds because Acetyl crosses the blood-brain barrier, however, used it until I got all my labs where I wanted them and my antibodies gone.  

     

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    • Posted

      Thanks for your advice! 

      I'll drop the l-carnitine down 1,000 and try 1,000 of acetyl with it and see how I feel.  I know I'm still hyper, but am a little worried about dropping to the bottom of my T's.  I get tested again on 8/9.  Hopefully my TSH will rise so my Dr. will lower not raise my prescription!

       

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    • Posted

      Hi Linda ! 

      My TSH is 0.01. My t3 and t4 are in normal range.

       I started taking 1000 acetyl last week. 

      How long did it take for your TSH to go up? 

      Should I also be taking L-carnitine as well? 

      Thank you in advance 

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    • Posted

      What dose of meds are you on Linda?  I was on 10 mg of Methimazole when I started and when my TSH rose slightly with just the Regular L-carnitine my doc dropped my dose to initially 5 mg and I had to raise it to 7.5 when I got symptoms.  Once I took the Acetyl, my doc was lowering it gradually,  The regular L-carnitine helps with muscle pain and weakness.  The Acetyl crosses the blood-brain barrier and takes whatever else you are taking with it so it makes your meds more potent even at a low dose.  Vitamin D is also extremely important for good thyroid functioning,  My TSH rose immediately to 0.12 when I was taking 3,000 mg of Regular and stayed there until I added 1,000 mg of Acetyl.  Then it rose to 0.70 within a month.
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    • Posted

      Thanks for your reply Linda. My doctor hasn’t given me any medication because only my TSH is out of range everything else is in range. I don’t have any symptoms but I do want to get my TSH up because I read it can cause heart problems.  He says I’m subclinical hyperthyroid abs he’s been just ‘watching it’ for 17 years !!!  I just want to bring my TSH up 

      I do have some thyroid nodules which were benign on biopsy 

      But they haven’t changed in 17 years and I can’t even tell they are there as they don’t bother me 

      I’m wondering if the acetyl could help to bring my TSH up. I’ve read it’s helped many people 

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    • Posted

      Usually it works best when it is combined with even a slight dose of Methinazole or carbinazole like 2.5 mg.  It may work if it is combined with the 3,000 mg dose of Regular L-Carnltine,  I don't know of anyone else in that position,  You could try it and monitor how you are feeling and your have your labs done at least every 4 weeks.

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  • Posted

    I would listen to your doctor. Your TSH is very low and that indicates that you're not yet in remission. This disease doesn't go away overnight in fact it might never. So why rush. Stay on the meds. The longer you're on them the better your chance of remission. There are actual studies on that. Good luck.

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