L-carnitine and Grave's

When I spoke to Dr. Schreiber of Sigma Tau, he suggested that I get a Total Carnitine, Free Carnitine and Acylcarnitine profile blood test done.  He suspects I may have a fatty acid deficiency based on the way Acetyl L-Carnitine behaves on my TSH.  I think for anyone taking Carnitine supplements, this is a good idea.  My boss majors in these metabolic problems and orders these tests on his patients.  If your daughter is on Carnitine supplements, it is a good idea for her to have them done.  You can mention to your specialist that it was suggested by the Medical Director of the company that sponsored the clinical trial of Dr. Benvenga regarding L-Carnitine and hyperthyroidism.

Linda

I am having cosmetic surg. Nothing urgent.   Just want it done now.   Lowered my armour thyroid meds to 120 mcg.  I feel different than I did a week ago.  Feels like it is hypo again    My TSH has been 399.54 before.   That is why I don't understand  why it is so low.  Weird.   I feel the best I have felt in forever and they say it is dangerous for me to feel good and not tired all the time and fluffy.  Confused.   Just need it to come up quick 

I never used the simple L-Carnitine, just the Acetyl-L-Carnitine, at a maximum dose of 2,000 mg per day. I didn't even know about it until after my thyroid had normalized, and it started getting back to normal when I started lowering my dose of Methimazole, generic Tapazole. That was quite contrary to the prevailing knowledge of the Endocrinologists.

My Endo warned me that I "would probably go back hyper" and only lowered my MMI because I had had an accident, falling face down into the street, the day or two before one visit to him. The only reason I could give for my fall was "brain fog" which he never seemed to understand until then.

I remember when I went into the lab, the following time, feeling very good, but being worried that I had gone back hyper. When the results came back I was in the normal range with my TSH as well as the FT4 and FT3.

I was still on the MMI and kept lowering it by a half tablet [5 mg per tablet] once a week, and maintaining that dose from one lab to the next. That was what my doctor allowed for the 2 lab times after I first showed the increase in TSH [that second time after my TSH had risen to being borderline high,] but I continued it on my own after that.

Each time I saw the Endo after that, I informed him what my actual doseage had been, and he approved it after-the-fact since my TSH continued in the normal range. I went off of all MMI in December 2013, and never needed it again since then. I started feeling worse when I had no dose to lower, however.

I went out of state for a second opinion from an Endo I thought would be better. She informed me that I had both antibodies--for both Graves' Disease and Hashimoto's Thyroiditis, and also was then borderline low with my TSH, low in range for T3, and in the upper part of the range for FT4. She wanted me to take a letter to my primary care physician, having him run tests every 6-8 weeks, then come back to her if anything unusual showed up.

My local Endo refused to have me back as his patient after seeng the next Endo, and I showed the letter to my PCP. He decided to treat me for hyperthyroidism based on the lab report in the letter, and gave me the options of Levothyroxine, Liothyronine [Cytomel, or T3 supplement], or Armour Thyroid. I chose the Liothyronine because it was mostly my T3 or FT3 that was low. I had to cut the smallest dose into 8 parts and have just one part per day to keep my heart rate under 90 beats per minute, but I increased it gradually after that when the labs turned out well, and as long as my heart rate did not increase.

I was allowed to go on Levothyroxine as well, but my TSH dropped to less than 0.1 and I was sent to another Endo who made me stop both supplements. It had been about 6 months after starting them. I felt awful again. Another 6 months, and I saw my PHP again.

I was skeptical when he wanted to put me on anti-depressants, but he had a certain glint in his eye which conviced me he knew what he was doing. He had me start taking Wellbutrin which is a different type from the usual SSRIs or the Tri-cyclic type. Immediately, I felt completely restored to health. I had energy, was no longer suffering from being cold in the heat of the day, no brain fog, etc.

I also had just found out about the Acetyl-L-Carnitine from Linda, done some online reading, cleared it with my Endo, and started taking it at the same time as the Wellbutrin, a Brazil nut per day, and two other OTC supplements, being Methyl-vitamin B12 and Methyl-folate. There have been times that I have missed taking one or another of these things and can tell that they each have helped me to feel well.

I believe the methyl vitamins are important for some people to convert T4 into T3, the high selenium in a Brazil nut supports the thyroid, the Acetyl-L-Carnitine is able to cross the Blood-Brain Barrier to help the pituitary produce TSH [AKA thyrotropin or thyroid stimulating hormone,] and feeling well helps the immune system to relax its attacks.

I have not had the A-L-Carnitine raise my TSH too high, nor have I had any of these things make me feel worse. I have been off all thyroid medications for over 3 years, and my recent tests have shown that I have no antibodies attacking my thyroid now.

So what do you think put you into remission? 😃

So happy for you that your found what works best for you and you have achieved remission.  thanks for sharing your recovery journey with us.  As far as I know, the Acetyl alone will not raise your TSH. When it is combined with an antithyroid hormone medication like Tapazole, then you need to be very careful with it and monitor frequently.  Acetyl crosses the blood-brain barrier and takes along with it the med so that it gets into the cell nucleus.  I am sure that would be true of anything else you are taking if it is taken with Acetyl. 

It seems to me that I started out hypothyroid but was never diagnosed because my TSH was never high enough to alert the doctors to the problem. TSH plays the important role of stimulating the thyroid to produce more T4. Of course the TSH drops when the body is producing a thyroid stimulant through the immune system, but it can also drop when a person is sick for an extended length of time. It drops in response to burning more calories than your activity levels suggest you need. The cells need T3 to help them burn fuel for energy, but in a famine or sickness that isn't good, so the liver converts T4 to Reverse T3 instead of T3. RT3 doesn't help the body spend energy like regular T3 does.

I think I was in that kind of situation when I was first told I was Hyperthyroid.  My TSH had dropped to zero, my T4 was only slightly above range and my FT3 was near the bottom of the range. FT3 is the most useful and important thyroid hormone, but is also measured in nanograms, meaning a very small amount goes a long way. It also has a very short half-life, meaning it might be at the top of the range early in the morning, and at the bottom of the range in the evening.

From day 1 on Methimazole, I felt worse than ever. I was also on a Beta blocker because my heart was racing, and I needed that for the first month of Graves Disease. [I was not really diagnosed with GD or treated for 10 months after the first indication of hyperthyroidism.] When I was first treated I was told to take the MMI 3 pills in the morning and 3 pills at night along with the beta blocker for the first month, then drop the beta blocker and go to 2 pills morning and night for the next month and see the Endo again before the end of the second month. When I was into the second month, My thinking was so fuzzy that I couldn't remember to take the pills [5mg each] every other morning. I took the right number morning and night one night then forgot the next morning, then at night, morning, and night the next day and a half, and kept that cycle going until I realized it was making a pattern, and decided to continue it deliberately. I also forgot to get my labs done before that second visit to the Endo. I got scolded on both accounts for being "non-compliant" and was not given any attention to the symptoms I reported having.

I cut a lot out of the long version of my story, but by the time I went into remission I was seeing Endo #2.  I was with him for 2.25 years.

I think it was learning how to become carefully non-compliant again that put me into remission, and the special suppliments I take that keep me there. Every time I carefully reduced the MMI, I felt much better. It felt like the immune system was like an army fighting the medicine, and I felt like it reduced its troops when I reduced the ammo the doctor was giving me.

After learning from Linda how ALC could help, and not realizing how she felt about it not helping unless you are on the anti-thyroid drug at the same time, I saw on the internet that there are people who are born with a deficiency in Carnitine to the point that it may simply be low, or have a complete lack of being able to produce it. Those who didn't have it at all died soon after birth. So now newborns are tested at birth and treated. It is genetic, so parents are also tested and treated if they are low.

The symptoms are the same for having low Carnitine as for being hypothyroid. Another genetic defect also causes the same symptoms: a defect in the methylization gene. Those facts are what suggested to me that I should take the supplements as I said before.

Maybe my explanations are difficult to understand, and if there is something else I can further clarify, let me know.

It may be that my case is different from most people, I can only report what has happened and what I did about it.

If I don't take the full 2000mg of ALC per day, I feel less well. The same with each of the other things I have already named.

I feel better now, having gone off Fish oil that I used to take. I might feel a little better being on vitamin D3. I believe Calcium-Magnesium-Zinc helps me in some ways, etc.

Hi Fern

I know there are newborn genetic issues with carnitine.  When i said that ALC doesn't reduce TSH unless taken with Methimazole, I was referring to its use for that purpose.  For myself, when I took the two together, it really raised myTSH rapidly into the normal range and to regulate the values, I would take it one day without the Methimazole and the next day with it.  This resulted in a drop in TSH. For thyroid purposes and raising TSH it was the best thing that worked for me but I always caution others that it needs to be watched carefully and adjusted frequently.  Regular L-Carnitine is used for a lot of the genetic defects and deficiencies.  I started off using regular L-Carnitine and it raised my TSH from less than 0.001 to 0.12 but it was the ALC combined with the methimazole that really shot it up into the normal range.  And in many cases of people who decide to use ALC with Methimazole, it shoots TSH up right into HYPO land.  From some of the postings, patients with Hashimoto's do better on regular L-Carnitine than Acetyl in controlling their symptoms.  I guess that might be the case if you have both Graves and Hashi's or you might take some of each.  I am glad that you are a patient who is a seeker and who is willing to take responsibility for your health based on your symptoms, research and experience and thanks for your very intereting posts.  

Yes, Linda, thanks for your input as well. I have no experience taking ALC with the MMI because I didn't know about it back then. The thing that seemed to help shoot my TSH up intp the normal zone was taking LESS MMI, contrary to the Endo's prediction.

Now, what I take seems to be very good for me, for some reason.

I have also never taken the regular L-Carnitine, and have wondered about taking it, thinking it might help more with losing weight, but otherwise I am satisfied with what I am doing. I also think that I my TSH would rise into the Hypothyroid range if I were taking it with the Methimazole, but then my doctor would stop the MMI prescription, and everything would be fine, like it is now.