L-carnitine and Grave's

sorry...I forgot to mention that she is still on 10 mg Tapazole. Should I increase the Acetyl L-Carnitine?

What dosage of Acetyl- L-carnitine was she taking? I think the Bugleweed is doing the same job as the Tapazole so she is getting double the effect from taking the two (like she is getting the same effect as taking 20 mg of Tapazole) because if she were not taking one of those two, I think the TSH would have risen really dramatically.

I have known of some Graves patients who have gone into remission just on Bugleweed and other natural herbs. I don't know how Acetyl-L-Carnitine affects those herbs, whether it works as synergistically as it does with Tapazole because my personal experience was with the Acetyl-L-Carnitine and the Tapazole.

She could try withholding the Bugleweed for 1-2 weeks, taking the Tapazole and 1,000 to 1,500 m of Acetyl-L-Carnitine and then getting her values tested again to see how she feels and if there is any difference in her results. She should continue to take the rest of her regimen, the Vitamin D, Omega 3 etc.

I think she is on the right path. Like me she is going to have to experiment to find the right dose. I found when I took my first L-Carnitine, I was finally able to lower my Tapazole. There is an article, I downloaded today at work from Life Extension magazine that described the need for Carnitine in Graves patients, that the disease depletes the body's stores of carnitine and replacing it helps a lot with decreasing the negative symptoms and with going into remission. You could probably find it by Googling Life Extensions Graves and L-Carnitine.

Though I have heard it is safe to take 2 to 4 grams of L-carnitine daily (that is 2,000 to 4,000 mg), I have also heard at the higher doses, some people experience stomach acidity. I think I got up to 3,000 mg on combined types of L-carnitines and did find my stomach was more acidic.

I just found that for me the Acetyl-L-Carnitine alone at even a low dose of 500 to 1,000 mg combined with a small dose of Tapazole just drove my TSH well into the normal range very quickly without any side effects of hyperacidity.

Please keep us posted on how she is doing.

Thanks for taking your time out to help me and many others on the web! A silly question maybe...why do you think taking out Bugleweed or Tapazole would make the TSH rise? I would have thought the more of both would increase the TSH level... Doesn't Tapazole also increase the TSH level? She is currently taking 1500 mg of Acetyl-L-Carnitine.

Thanks again LInda!

Not a silly question at all. I think the Acetyl-L-carnitine works well with the Tapazole in that it helps the Tapazole do its job by getting it into the cells. I don't know what Acetyl-L-Carnitine does for the Bugleweed. Since Bugleweed is a different substance, I don't know if the Acetyl-:L-Carnitine interacts with it as synergistically as it does with the Tapazole or whether the Bugleweed is blocking the effects of the Carnitine. By discontinuing it, you can see how it works with the Tapazole alone. If there is no difference or if it is worse, then you can add the Bugleweed back in. If you see as dramatic a difference as I did, then you know the combination of using Bugleweed and Tapazole is not as beneficial as using the Tapazole alone. Also, it if works as well as it did on me, you can lower the Tapazole dose gradually as her results normalize.

With me, after I was getting those great results, my body naturally told me to lower the dose of Tapazole in order to feel better and my doctor agreed when he saw the results.

For those of you who aren't aware of this, there is a thyroid advocate by the name of Mary Shoman. She writes a newsletter with information and resources for people who have thyroid diseases. Her newsletter today is on finding a good doctor to work with you and she lists a few of them along with information on their approaches to treating various thyroid problems.. You can find Mary's newsletter to join by googling her name.

Acoffin, I just wanted to clarify that it is great news that your daughter's healing seems to have taken a turn for the better in your most recent actions of utilizing the naturopathic course but I am stymied by the results after two weeks of acetyl-L-carnitine use. The lab results you reported were more like mine were when I tried the course of regular L-carnitine before I added the Acetyl-L-carnitine. When using the regular L-carnitine, my TSH rose from less than 0.01 to 0.05. While not yet in the normal range, at least it was going in the right direction and I felt improved at the level of my symptoms, so much so that I was able to decrease my Tapazole. But when I added Acetyl-L-Carnitine, my TSH rose to 0.78.

So that makes me wonder whether what you are using is the regular L-carnitine or the Acetyl-L-Carnitine? If you are indeed using the Acetyl-L-Carnitine then I would wonder if any of the naturopathic items you are using are blocking the action of the Acetyl-L-Carnitine, hence my suggestion to try to withhold the Bugleweed and check blood results and see what happens. After two weeks of acetyl-L-carnitine use, I would have expected a TSH level to be more like 0.40.

Please let me know what type of Carnitine you are using and what you think about this.

Thanks.

Linda

acoffin, you wrote "...why do you think taking out Bugleweed or Tapazole would make the TSH rise? I would have thought the more of both would increase the TSH level... "

I don't know where the misunderstanding is, but having the TSH level rise, or be increased are the same thing. And yes, I know nothing about Bugleweed, but the traditional approach of regular medical doctors is to make the TSH level rise, or increase, by using Tapazole or some other Anti Thyroid Drug (ATD).

Methimazole (MMI) is generic for Tapazole, and they are very similar to Carbimazole used in the UK. PTU is an older ATD which may be used under some circumstances.

These ATD's work by suppressing T3 and the biofeedback capability of the human body is supposed to increase levels of TRH which increases levels of TSH so that the thyroid can produce its own T4 which is converted to T3 by enzymes of deiodinization (or removing 1 molecule of iodine from the T4 molecule to turn it into T3). Free T3 is the active form of the thyroid hormones which works in the cells to accomplish some of the most basic things that need to be done.

Endocrinologists usually don't put much stock in Free T3 tests, saying they are inaccurate, and I can see why. Free T3, as opposed to Total T3, is measured in picograms and the normal range is something like 4-6, in other words, extremely small units in single digits unless very hyperthyroid.

Whether suppressing T3 production actually works over the long term or not might be up for debate. In my case, the TSH didn't seem to budge from near zero until I was able to gradually lower my MMI. It also increased closer to the middle of the normal range when I increased* the Cytomel (aka Liothyronine or LT3, the synthetic version of T3). I think this is because my autoimmune reaction is to increase thyroid production by its own devices if my body feels low, no matter what my TSH "says" about it.

*It should be noted that taking, then increasing, my LT3 (after having been off the MMI for about 7 months) doesn't mean I ever took very much of it per day. I actually figured out how to divide the small 5 mcg pill into eighths and increased from 1/8 to one and a half pills (or 7.5 mcg) per day. I never took more than that.

I made the mistake of increasing the dose within a week of my next blood test. It was also the first blood test 6 weeks after taking 50 mcg Levothyroxine (LT4). That was the first time my TSH went back out of range in over a year, and that test last November was 0.009 for TSH and the Free T4 and Free T3 were in the high end of the normal range. I was being treated by my PCP then referred to another endocrinolgist.

My Endo #4 has run one test so far, which resulted in some improvement in the TSH and with my Total T3 in the normal range but in the lower half, if I remember correctly. T3 is very volatile, though, having a half life of about 24 hours. It is at its most effective after about 3-4 hours and is subsiding after that.

Thanks for the information. Linda, we are using the Acetyl-L-Carnitine. Maybe it's the brand...any suggestion? My daughter has had Graves for almost 5 years...and I don't know if that makes any difference.

I had Graves for 2 years before I tried regular L-Carnitine, but I did take a dose of that at 3,000 mg and my TSH only rose to 0.05. And I was happy to see that happen as it had been less than 0.001 for 2 years. However, I then added the Acetyl-L-Carnitine to the regimen, 1,000 mg (dropped one of the regular Carnitines by that much) and my TSH shot up to 0.78. I have used two different brands but the one that seemed the best was Genestra.Brands. The other one I am using now is Good 'N Natural.

They say you can take up to 3 to 4 grams which would be 3,000 to 4,000 mg safely. I would suggest she increase the Carnitine dose by 500 more mg. Does she take it when she takes her other meds? That's the best way to take it.

I am happy her symptoms are improving and so is her blood work. I just expected it to shoot right up like it did for me. As long as she is feeling better symptomatically try that and see what happens when she gets her next round of blood work done. When will that be? And do keep me posted.

Linda

I just posted a message but I don't see it. I guess they are checking it for references to web sites etc.

I just wanted to say that when my TSH shot up from 0.12 to 1.4, I was shocked and so was my Endocrinologist. Then I played around with dosages of Acetyl-L-Carnitine and Tapazole and let my TSH fall to 0.50 (still in the normal range). Then I took 500 mg a day along with 5 mg of Tapazole a day and it shot up to 2.4. I like keeping it in the range of 1.4 and worry about it going too high now so that's why I suggest starting at a lower dose as you did and raising it slowly. Also to avoid the stomach acidity although I never had much of a problem with that even when I was taking more than 2,000 mg a day.

Linda

Hi

It's been a couple of weeks since we have heard from you. How is your daughter doing now?

Linda

Hi Linda,

Sorry I didn't respond right away. I wanted to wait for this month's lab result. You're not going to believe this....my daughter FT4 and FT3 are both within the range. This marks the first time she has been in range without having to increase her Tapazole dosage. In fact, in March, we decreased Tazazole by 2.5 ml and increased the Acetyl L-carnitine and her results have dramatically changed...not just a little dramatically. She went from FT4 24.3 to 15.6, FT3 8.2 to 5.81...her TSH remains at .01, but as I was told that that doesn't matter as much. I can't tell you how excited I am. This will mean I can lower the Tapazole by another 2.5.mg until she is stable. Thanks for spreading the L-carnitine news and people out there who are struggling...please give this a try.!

That's great news! Thanks for keeping us posted!

Hi acoffin

Is there a way I can contact you directly? I notice that some people have emailed me directly and I am not sure how you do that from this site.