surgery tomorrow or do i cancel

Ok im also curious how long did it take for tsh levels to start coming up once taking L-carnitine. And did u get any side effects from using it. As I read up on a few.

My GP had no idea. So waiting for call back from my consultant.

I really had no side effects from using the L-carnitine. At higher doses, slightly acidic stomach but I used higher doses when I was on regular L-carnitine. The Acetyl-carnitine is more effective and you do not need a high dose for it to work.

It really works very quickly because it is highly absorbed by the body in comparison to regular L-carnitine, and I would say if you get your blood tested within 2 or 3 weeks of being on it, you will see a difference, at least I did.

My 2.4e result was done on November 27, 2013 then I discontinued the carnitine right after Xmas and my 1.08 TSH result was done on January 9, 2014.

Ok so there 2 different ones which one do u suggest I go on with a tsh of <0.02>

I would suggest the Acetyl-L-carnitine rather than the regular. 250 to 500 mg. Start with that. You will I am sure see a difference in TSH within a month. Get your blood tested then to verify.

If any people reading this Board try the Acetyl-L-Carnitine and see a rise in their TSH, I would really appreciate hearing from you. That's how we educate doctors.

If any of you are interested in trying the acetyl-L-carnitine do not be surprised if your doctors don't know about it or pooh pooh the idea. There was only one study I found by an Italian researcher in the early 2000's on the use of L-carnitine for hyperthyroidism and before that it was in the 60's by a German researcher. There is no money to be made by big industry because it can't be patented so the use of this will only be known by word of mouth and it will be a long time before doctors know about it or use it routinely.

Ok im going to give a try :-)

Hi Linda I thought I'd let you know my doctor got back to me yesterday and has told me acetyl - L-carnitine and L-carnitine is not licensed in uk. Also they said they would not recommend trying as not licensed in this country.

Hi,

Someone else on this Board posted the name of the Health Food Store you could get Acetyl-L-Carnitine at in England. It is not a prescription drug so perhaps your doctor thinks it is. It is an amino acid that is usually present in the body but in Graves disease, the body gets depleted of it. It is available here in Canada and the States at Health Food stores. It is also available on Ebay and other sites on the Internet. There is a prescription L-carnitine that is available in Canada but it is horrendously expensive and not as effective as Acetyl L-Carnitine in raising the TSH. If ordered on Ebay or another Internet site, it should be listed as vitamin supplements on the Customs Form. They took it off the market in Canada for a year right when I had had a good result with it but due to outrage from customers, Health Canada removed the ban on it again and it is readily available.

I should tell anyone on this Board that your doctor will not promote it or recommend its use because 99% of doctors don't know anything about it and don't want to learn about it and its effectiveness with Graves because they don't want to know. They want to do what they have always done, even if it is not in the best interests of their patients. So if you are wanting your doctor's approval or looking for his knowledge about this, you are not going to get it. The only way doctors will become knowledgeable is if enough patients take responsibility for their own well being and if enough patients tell the same doctor of their success with it and give him the published paper references. Change is difficult with doctors because they tend to "follow the herd". When I saw the research paper on its use and I asked my boss about it (he is a metabolic specialist) he said to me "Well it won't hurt you".

It is difficult for most patients to become empowered and act on their own best interests. One of the Endocrinologists I saw was really really set in her ways about prescribing RAI and/or surgery for me even though I had all normal thyroid results at the time. She used a tone that if used on any other patient would have alarmed them and caused them to feel self doubt and do what she said. What it meant to me was that she was a stupid doctor recommending that to a patient who has a relatively minor disease, no symptoms and good outcome on methimazole treatment supplemented with L-carnitine.

I am not sorry I have taken the course I took. My specialist has gone along with me on it because he knows I am knowledgeable. He even said that to his Resident.

My sister in law had Graves (really major though with very elevated levels of T3 and T4 compared to mine) and had Radiation treatment. She was grateful for the relief from thyroid storm symptoms it gave her but she gained weight and even now complains of being tired all the time. That's what I hear from anyone who has had RAI or surgery.

I was a medical transcriptionist for many years which is where I first learned about the use of Methimazole and PPU for Graves disease and in pediatric patients, that's all they use. They would never use RAI or surgery in a pediatric patient if they could find a less severe form of treatment. My dental hygienist when she learned what I was on for my history of Graves, told me that her doctor didn't tell her she had the choice of drug treatment for her Graves and I think that is just criminal of a physician to do that.

Hi no they said they maybe sell it in Holland and Barratt. Which is our health food shop. But they don't I checked . My doctor emailed me over the pages from the book they use and it says not licensed in uk. I get what ur saying but my doctor said if I brought over Internet I may do more harm than good :-(

It's your decision. Clearly he wants to do surgery and you have to decide if that's what you want to do. If you are undecided, you can always buy a little time and ask him to postpone it a month or so.

It is available in Canada and I have bought it from three different companies who make this from two different stores and all of it has been effective for me raising my TSH.

I just Googled "Is acetyl-L-carnitine available in the UK?" and found information that way. There was one response that said it is available in the UK at Nature's Remedy. You might want to try Googling this question yourself.

One of the sites led me to an interview on Youtube of Dr. Ken Hassen from Sigma Tau, a company who produces L-carnitine. After googling this question, it came up under the heading Acetyl-L-carnitine - Youtube with Dr. Hassen's picture beside it.

Like I said, you are not going to get any enthusiastic response for this from doctors. Hopefully this will change in the future as more patients become aware of this and give it a try and inform their doctors. My endocrinologist was astounded at the results I got but he still pushes RAI and surgery only not with me because I told him up front when I saw him the first time that I wasn't interested in having that done at all.

You can buy It on the Holland and Barrett website.for £12.99 a bottle.

I went in there screwball they didn't have it. Anyway I'm not taking as there must be reason it's not licensed for Gp's to give. Maybe not enough research.

Screwball it does have them on website but it doesn't say suitable for thyroid problems and if ur on any medication Consult doctor before use and my doctor said not licensed so therefore not to take.