New To Grave's Disease diagnosed in June
Posted , 4 users are following.
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
0 likes, 8 replies
linda187 goldilvr
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.
goldilvr linda187
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!
linda12919 linda187
Posted
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
linda187 linda12919
Posted
linda12919 linda187
Posted
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
linda187 linda12919
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.
linda12919 linda187
Posted
grayesthistle goldilvr
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.