Tsh level

Fern, you have had quite a journey. I don't know much about someone who has the two conditions and I do not know how L-carnitine would work for those conditions. If you try it, start as low a dose as possible.

I have a friend with Hashimoto's and even though her TSH hits 19, she refuses to take synthetic T4. Only takes stuff from the Health Food store, Thyrosense I think it is called. She seems to do okay as long as she gets proper rest. She has had a history of extreme trauma growing up and I am sure this contributes to her thyroid problems as stress does for all of us.

My boss works with those conditions, (children who are carnitine deficient due to genetic defects) which is where I first heard of it. I think it is a little different if you are an adult and carnitine deficient though.

It sounds as though you need to take really good care of yourself, i.e. stress reduction techniques such as mindfulness, yoga, perhaps counseling as well.

I would get a copy of my lab report every time I get blood work drawn as well.

Keep us posted on how it is going for you.

Linda

Hello Fern,

Thank you for writing the details of your journey. It's fine that you wrote a book! It was read, we learned more (which could help us with our challenges), and perhaps it was good for you to "get it out" on paper -- kind of a release?

Linda's suggestions are great. Removing any stressors in your life as best you can, and having at least one person (if more than one...yeah!) in your life who provides you with consistent emotional support is crucial, in my opinion. I was in pretty bad shape, emotionally and physically, when I met my boyfriend and I don't think I could have started my path to wellness without him. Things probably would have gotten worse for me.

I'm sure this forum (especially Linda's recommendations!) have been helpful. Again, don't forget the mind-body connection. I really believe you'll find some relief through the stress reduction techniques Linda mentioned. Listening to a meditation/relaxation CD a couple of times a day would probably do wonders for you.

Remember, also, to not be afraid to exert yourself and make it clear to others in your life that you need to take care of your health...it's a matter of life and death...and then DO IT. Take time for yourself. No guilt. Make yourself and your health a priority. YOU COME FIRST!

After meeting with Endo #4 last week, concluding that:

1. I probably have another non-thyroidal condition causing some of my symptoms.

2. There is no reason pertaining to the thyroid that he, or his colleagues know of, why I should either take acetyl-l-Carnitine or not--but an opinion that "...it probably wouldn't help"

...I went to the health food store in my neighborhood and found the lowest dose I could find on the shelf, 500 mg., bought it and started using one capsule per day.

I feel much better, more "normal" even when I don't feel entirely good, like being forgetful in a normal way instead of being totally blank minded. Or drowsy at night time when I really do need more sleep, etc.

If any of you ask your docs about whether to use Acetyl-L-carnitine or not, I guarantee they don't know about it, don't know what it does with Graves and will not endorse it. I think other members have posted references about the use of L-Carnitine for Graves on this Board but I guarantee you that doctors don't care and aren't open to this information so won't endorse it.

Fern, keep us posted about your lab results. I am curious to know them.

Linda

My primary doctor essentially told me that if carnitine has anything at all to do with the thyroid he would not prescribe it, and to ask my endocrinologist. My endo, fortunately said it didn't affect the thyroid, so I felt free to get it at the health food store, although it says on the bottle to let my doctor know I am taking it. I haven't done that yet. I understand there can be drug interactions with it.

Endo #4 called me yesterday after I called the office. I called because I was running out of Levothyroxine and it would only last me for a week or two, when it was my understanding that I should stay on the present levels for the next month until I have the labs. Now he tells me that in discussing my case with his colleagues it is decided that I should go off the Levothyroxine right away, and taper off the Cytomel, and be tested a month after I have stopped them both.

I'm feeling so much better taking the Acetyl-L-Carnitine that I really don't hardly care, but it is a little stressful feeling like I am totally at the mercy of the current medical practice.

Like I have stated before, most doctors, even endocrinologists know nothing about Acetyl-L-carnitine and the thyroid and therefore will not endorse it. It is not a prescription item. It does obviously interact with methimazole as it raised my TSH levels a lot when the Carnitine and Methimazole were taken together. In fact, it interacted so well and raised my TSH so high that I am constantly adjusting my dosage of Carnitine and playing around with it to keep my thyroid levels where I want them. So I wouldn't expect much from doctors regarding using this. I would read the articles by Dr. Salvatore Benvenga on the use of L-carnitine and hyperthyroidism. You can find them by Google. If you are going to use it, you need to be a very proactive patient, take responsibility for yourself and get blood levels checked frequently in order to adjust meds.

As I said before, I do not know how it impacts patients who have both Graves and Hashimoto's. You might want to contact Dr. Salvatore Benvenga in Italy who wrote the paper on the use of L-Carnitine in hyperthyroid patients and ask him if he has any knowledge about treating patients with the both conditions.

There is a thyroid advocate by the name of Mary Shoman who writes a weekly newsletter in a site http://thyroid.about.com. Her newsletter today contains some interesting advice entitled "20 Secrets of Successful Thyroid Patients". Her newsletter is a great resource to subscribe to.

Linda, have you considered that it might not be the Carnitine that needs adjusting when your TSH is raised so high? Why not just lower the Methimazole, and let the Carnitine do its thing? Won't the doctors agree that if your TSH is raised there should be a reduction in the MMI? That is where I was best able to take my medical care into my own hands. You can always take less of a prescribed medicine but never more.

I have read Mary Shoman's writing at that site, and will take a look at it again. I also know she says some things that the endocrinologists don't agree with. The same would be true no matter what I read, unless it comes from actual approved and medically respected scientific studies.

I had taken my 25 mcg Levothyroxine and 3.75 mcg Cytomel when the Endo called and told me that I should go off everything. The insinuation is there that he will not (or will not be allowed to) prescribe the thyroid supplements unless my TSH shows the need, and doesn't expect that to happen unless I have been off the supplements for a month before the lab tests.

So even before I changed the doses, the night after the Endo called, I was almost too stressed out to sleep and when I went to bed, I didn't drop off to sleep right away, and then I woke up again after about 5 hours sleep unable to fall asleep again until I had a 3 hour "nap" around noon.

Last night, I slept only 3 hours, being very obviously stressed, after reducing my meds. Today, I plan on increasing the Acetyl-L-Carnitine to 500 mg twice per day.

I don't believe the old established Endocrinologists are right, just that I have to cooperate with them in order for the medical breakthrough to occur which will benefit everyone, not just myself.

Oh I have tried that too but I get a return of rapid heartbeat so I don't feel good when I lower the Methimazole. It's a fairly low dose as it is. I have worked with my Endo trying to lower it. He was very adamant that I lower it and not just discontinue it, Also when I lower it my TSH drops as well. I have tried cutting the pill in half taking that dose daily and taking full dose every other day but doesn't feel good yet. I even tried doubling the dose of Carnitine on alternate days on the days I don't take Methimazole on alternate days and my TSH dropped to .80 and then .50. It is a juggling act to get it at the level I want and to keep it at that level but at least all my thyroid indices are in the normal range and I feel fairly good as regards to my Graves being under control.

I just posted a reply and it doesn't seem to be appearing. Ugh!

Yes I have lowered the Methimazole and taken more of the Carnitine and my TSH dropped too low. Also had return of rapid heartbeat.

Linda

When my Endo #2 started lowering my MMI, I was on 2.5 pills (5 mg tablets) per day and he had me skip one of the half pills once per week. That was the first time under his care that my TSH rose from 0.01 to 2.5 or so. But, I agree you have to do what is right for you. Thanks for explaining. Maybe my situation is different because of the conflicting antibodies.

Here's (literally) food for thought:

Carnitine occurs naturally in our bodies, but when we are hyperthyroid, the thyroid "uses it up" and then there isn't enough to power up our muscles. Thus, we experience muscle weakness (and perhaps other symptoms).

If you eat red meat, it naturally contains carnitine. I am not a huge fan of red meat but I have to say that I DO like it - I just don't like added hormones fat, and all the negatives about red meat. I try to get grass-fed beef when possible, or at least as "clean" as possible.

Anyway, I can't ignore the fact that whenever I eat red meat (usually a ribeye or filet mignon - just a small steak does the job), I feel pretty good! It's clear that the carnitine helps me. I probably could eat more red meat and not even need to take the carnitine supplement.

So if your doctor is spanking you for taking carnitine supplements and you want to be "compliant" (and to experiment a little more and also feel better), then stop taking the carnitine supplements and eat a few bites of steak each day at the same time you take your medication. You may feel a lot better, and you can honestly tell your doctor that you are NOT taking any supplements!

I'm more a chicken and fish person and don't eat red meat that often. I will have a hamburger at a friend's barbeque or a steak in a very good steak house but I don't cook red meat that often. I don't have a problem with my docs approving or disapproving my use of Carnitine. I think my Endo is shocked at my results and might even consider it for his other patients. I am an adult and free to make choices about my health and do so. I did supply him with the research article by Dr. Benvenga though when I first started seeing him and I think this helps as they don't think you want to use L-carnitine on a whim. That's their field - published medical articles by other doctors.

My reply was really in response to Fern's comment (perhaps mostly on her "other" thread) about her doctor's seeming intimidation toward her regarding her taking the L-carnitine. Yes, I believe I suggested in a previous comment to take Dr. Benvenga's article into the endocrinologist, as, yes, I agree, doctors (and most conventional medical practitioners) will only look at "evidence" based on published medical articles using traditional, scientific, double-blind, etc., etc. studies.

Gosh, if we didn't take control of our own health and let the doctors do it all, we'd REALLY be screwed up!

I started the new thread because I feel bad at sabotaging this one started by tgreen who hasn't replied once. Now, I just want to talk about my issues on that one and discontinue this line of thought here.

I will just say that my new Endo said he doesn't care, but I will report what I am taking anyway because that is the honest thing to do. I also need to let my primary care doctor know.

Also, the first thing I did was to increase my consumption of red meat. Before that, I was so incapacitated I could hardly do anything, and I had my husband cook a beef roast, which seemed to revive me. That was a few days before my Endo appointment and he said I was "looking a lot better." Of course, I'm sure he credits it to having had me decrease the Cytomel... It doesn't really matter. What matters is that I can tolerate the decrease better.

Awesome Fern...thanks for sharing...sounds like carnitine is one of the missing elements for several of us!