Hi I'm new here!!!

Thank you for the info!

I just ordered some acetyl-L-carnitine...can't wait to try it. After reading the article I found (the link in one of my previous posts), and knowing that it has helped you (Linda), I feel very optimistic about it alleviating the muscle weakness in my legs.

Let us know how it works for you. Also keep close tabs on your blood work. I found that it works very fast and I have been playing with the dose, sometimes withholding it if my TSH is what I consider to be too high or adding it if it falls too low. I am fortunate that my family doc will let me do blood work at least once a month.

When I was on Methimazole it was tortuous. I don't have copies of all my lab work that was done the first year under my #1 endocrinologist, but #2 said #1 had made my thyroid too low. Endo #2 didn't get my TSH to rise until after he lowered my dose slightly because I was having so much trouble -- I was like a walking zombie and very confused. I fell face down in the street and didn't know why. It was between getting the blood draw and seeing the endo. When he saw me all scraped up on my face, we talked about it and he lowered my dose by one pill one day per week even though my TSH was at zero.

Three months later my TSH was at 2.53, and I felt well enough that I thought my thyroid was too high again. I was pleasantly surprised, but asked that the doctor would lower my dose again. He did so reluctantly, again by one pill per week, I think, and when I did the next labs after 2 months, my TSH was above the normal range, so the office called to have me cut back on my MMI dose.

After that I decreased it on my own if I felt like I needed to when the doctor wouldn't, and informed the doctor what I had done at the next appointment. I was able to keep the TSH in the normal range that way for the next year and a half, and the doctor didn't complain since my numbers were right in his book.

It was a year ago in December when I actually went off the MMI altogether, but then I felt the need for thyroid supplementation which Endo #2 was not willing to prescribe. I went out of state (from Utah to Colorado) to see Endo #3 with similar result. She was afraid to give me "the smallest dose" for fear I would go Hyper. She did tell me, though, that I had antibodies for both Graves' Disease and Hashimoto's Thyroiditis and that the HT would eventually destroy the thyroid as surely as if I had Radioactive Iodine. She just wanted me to have the RAI and get it over with so I could be given replacement hormone. I refused because these endos have never given me any reason to trust them to give me adequate replacement hormones.

So it was in May 2013 when I saw Endo #3. My insurance wouldn't pay because she was out of state and not on the contract. Endo #2 dismissed me as his patient because I went elsewhere for a second opinion. We had been to various doctors after our old one retired before I was dx'd with GD, but had been to a D.O. for a year or so when my husband started having problems with shortness of breath and which escalated into more symptoms without the doctor zeroing in on his actual problem of Heart Failure. So we got a new PCP, a young, progressive M.D. who seems well versed in integrative medicine -- about the same time as I went to Endo #3.

Because I lived so far away, Endo #3 wrote a letter instructing my PCP to run the labs she wanted me to have and would have seen me again in a year, but I showed the letter to my new doctor and when we discussed it, he agreed I needed treatment she wouldn't give.

He gave me various options and I chose the Cytomel (liothyronine), which eventually I built up on to the point of taking 1.5 tablets per day (5 mcg per tablet) and added 50 mcg the last 6 weeks before the end of November last year. At first, the labs showed improvement on my TSH levels, rising from borderline low to about 1.0 range (0.4 - 4.0) and I felt much better.

But my labs in November showed it back down to 0.009, so my MD got cold feet and sent me to another Endocrinologist about an hour's drive away. I was then taking 25 mcg Levothyroxine and 5 mcg Liothyronine in the morning, and 1.25 in the afternoon At that appointment in January, my blood test showed my TSH at about 0.18, I think. My free T's hadn't been above range any time, and my total T3 that this Endo #4 ordered was also well below the top of the range. Still he wanted to take me off the Liothyronine. I reduced it to 2.5 mcg in the morning and 1.25 in the afternoon but I couldn't handle less than that. I wrote him about it and I will see him next week, one month after my last appointment.

I just need to find out more about the acetyl-L-carnitine and how my gene for the carnitine looks so when I ask him about it I will be somewhat informed. My guess is that I am genetically lacking and need the supplement which would restore at least my ability to produce all the TSH that my body really is calling for. Even if it makes my TSH high then I believe it would be accurately showing that I do need the thyroid supplementation.

Hi Fern,

I don't think you are genetically lacking regarding the Carnitine. I think everyone who has Graves disease has a drop in their carnitine levels because of the disease. The carnitine blood test here costs something like $30 to $45 to get done and it is one lab test that is not covered by our health insurance OHIP. I pay for it and it gets reimbursed under my extra health coverage from work. Not all labs do that test however.

I think it is wonderful that it boosts my TSH from the 0's right up to the normal range but I find it works so well that it is difficult for me to find the dose that works and TSH stays where I want it. I do not want my TSH in the range of 5.0, I prefer it remain at 1.4. I hope the drug company I contacted that produces carnitine will look into this. Until then, I just play around with different doses, and get blood tests frequently because it does not take a very high dose at all in order to raise your TSH. My T3 and T4 stay in the normal range and those two values seem to respond to the amount of methimazole I take, not the carnitine. The carnitine seems to affect only the TSH.

Before I got Graves, I was on Cytomel. Briefly was also on Synthroid but I was not taking any of this for thyroid reasons. I much much prefer the Cytomel for as close to a normal feeling in my body as the natural hormones. A psychopharmacologist told me that T3 (cytomel) converts to T4 in the body but not the other way around. I also heard the T4 (synthroid) does not convert to the working T3 in the body.

Keep us posted Fern on how you do. Perhaps your new doc will be open to the Carnitine if you get really remarkable results like I have.

I see what you're saying, Linda. I started out years ago with the idea that there was something genetically wrong that the doctors were missing. My sister eventually got diagnosed as low thyroid, but didn't respond to the Levothyroxine treatment, so went to a naturopath who gave her Armour Thyroid. My mother died at the age of 45 of a heart disease. She had Rheumatic Fever as a teenager which gave her a heart murmur and I believe she actually had heart failure which may have resulted from that or from undiagnosed hypothyroidism or, possibly from this mysterious genetic problem... I have also seen cousins on that side of the family who seem to be hypothyroid but are not diagnosed because their TSH is "in the normal range."

My mother had rheumatic fever also when she was about 9 years old. They did not find her heart disease until she was pregnant with my sister at age 45. Three years later they did a valve replacement and she had many strokes and heart attacks after that because in those days in a small town, she was unable to keep her blood thinned at the right level. She died young at 57 from this.

My brother is hypothyroid but don't think it is from any autoimmune disease.

Hello Linda and Fern,

Thanks for sharing all this info. Very informative. I highly recommend reading the article that I posted the link to (one of my first comments). I really learned a lot from it. One thing that you said that is true is that using the carnitine is NOT because you are genetically low; it is because it has been scientifically proven that having hyperthyroidism "eats up" the existing carnitine in your body (what your body NEEDS to give your muscles strength and the power to work). When you don't have enough carnitine, your muscles are weak and just don't work. That's how I often feel. A common symptom. It zaps your quality of life, for sure. Sometimes I hardly make it up the basement stairs! And I can hardly carry the extra weight of a bag of groceries up the steps to our house. So debilitating! The article talks of the "Thyroid Storm" that is VERY serious and kills 50% of the people who have extreme hyperthyroidism (due to heart attacks mostly). When I get what I consider "thyroid attacks" and my heart is pounding, etc...it really scares me. Well, I guess rightfully so!

I learned from the article that we need to supplement because the overproduction of thyroid hormone "eats up" our carnitine so that we don't have the carnitine needed to power our muscles. We have to get enough "extra" so that the thyroid won't take this "extra" away and it can be used to power our muscles.

One other interesting fact that we need to know is that the carnitine is NOT helping the source of the problem. The relief that we feel is NOT from the carnitine causing our thyroid to be healed. It is simply providing symptom relief. We still need to address healing the thyroid, even though the carnitine is alleviating the muscle weakness.

The article also talks about the different forms of carnitine. PLEASE read the article. I think you will feel more empowered when talking to your doctors. I would even print out the article and take it with you. It is comprehensible, yet very professional, siting doctors' names and scientific studies that were done, along with the conclusions of the studies. This is the site where I ordered the acetyl-L-carnitine from. I think they have a higher quality product.

I also found a website from the NIH (National institute of Health) that was very informative (Google "NIH Carnitine" to find the site). Here is some info from that site, but lots more info to read there:

Carnitine: What is it?

Carnitine, derived from an amino acid, is found in nearly all cells of the body. Its name is derived from the Latin carnus or flesh, as the compound was isolated from meat. Carnitine is the generic term for a number of compounds that include L-carnitine, acetyl-L-carnitine, and propionyl-L-carnitine [1-2].

Carnitine plays a critical role in energy production. It transports long-chain fatty acids into the mitochondria so they can be oxidized (“burned”) to produce energy. It also transports the toxic compounds generated out of this cellular organelle to prevent their accumulation. Given these key functions, carnitine is concentrated in tissues like skeletal and cardiac muscle that utilize fatty acids as a dietary fuel [1-2].

I've been trying to eat less meat, and my fiance CRAVES steaks and has eaten steaks for years. He says he feels much better when he eats red meat. I DO believe that we each have different body chemistry and some of us are truly "meat eaters" because our bodies NEED meat. We found a market nearby where we can purchase grass fed beef, which is pretty much the healthiest meat you can buy. No grains, hormones, antibiotics, etc. I sill have tried not to consume much meat. My fiance told me he had been observing that the days that I DID eat a few pieces of steak, that I would feel much better and more energetic the next day. I told him about the carnitine/thyroid connection and all he had to say was, "We need to eat more steak!" lol

Red meat contains the most carnitine of any food we eat...no wonder I feel better when I eat it!

Keep us informed, Fern! The bottom line is, we need to take our health into our own hands, always question what the doctors say, and listen to our own intuition...

Hi Veronica,

Let us know how you make out with your Acetyl-L-carnitine. I am not a big red meat eater also but I do eat some.

I gave my Endo a copy of the paper by Dr. Salvatore Benvenga but most physicians will be difficult to convince to change their standard of care unless it gets plastered over the internet and many many people testify to its benefits.

I have wondered if when a Graves patient first has symptoms if they are treated with a one week course f Prednisone if it would cause their thyroid disease to go into remission. That seems to work with other autoimmune diseases if they are caught early.

Linda

When my third child was 9 months old I was treated with Medrol (prednisone in a pony-pack) for chronic nighttime cough, after being asked if I was pregnant (I said "no" because I hadn't had a period while breastfeeding.) 9 months later my next daughter was born with infant glaucoma likely caused by the steroid treatment. Fortunately it was caught right away so she was operated on and didn't go blind.

I had 4 children, turned 40 the day after the youngest was born, then had 5 miscarriages. At age 52 I was found to have a high ANA and was treated with prednisone 10 mg per day for a couple of years I think, tested for liver function and TSH for several more years until my ANA dropped to normal. I was 60 when diagnosed with Graves' Disease.

Welcome, jhonyyon, it seems like you are having trouble posting here. That happens if you try to post a link.