L Carnitine and Graves desease: I have read that... - Thyroid UK

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L Carnitine and Graves desease

Deia68
Deia68

I have read that if you take L Carnitine and Methymazole it will help your levels. 

Anyone here that have tried it? How it has worked to you? Can I do it by my self or I have to tell my doctor and have a prescription. 

I will Appreciate experienced advises on that. 

Thank you. 

13 Replies
oldestnewest

I'm not hyperthyroid so have no experience of this one. But a quick search of the site found this post from 9 months ago. healthunlocked.com/thyroidu...

Mixed results, it seems. If you use the search box (top right) you may find other posts on it. It might be worth private messaging those who say they've tried it.

Edited to add: See healthunlocked.com/search/l...

Also, can total thyroidectomy helps to improve swollen and bulging eyes?????

I have read that people that have taken this surgery have an eye improvement after a while. It is true? 

I am in treatment with Methimazole for one year but my eyes are still a little  bulging and swollen around eyelids.

Please help! 

Gilly81
Gilly81 in reply to Deia68

I  went to a combined TED and Graves' unit in Birmingham back in 2001/2. I do not think a thyroidectomy will make any difference, once you have the eye disease you have to wait for it to go 'cold' which takes around 18 months. Once mine was cold I had operations on both eyes to make them look more normal again. My left, always the worst, still bulges slightly. 

Silver_Fairy
Silver_Fairy in reply to Gilly81

Gilly, may I ask how bad your TED was please? Mine has been diagnosed as mild (although I would beg to differ!)

I was wondering how bad your eyes need to be before they will operate.

Gilly81
Gilly81 in reply to Silver_Fairy

Mine was regarded as mild, I know it does  not feel like it and it was very disfiguring with all the swelling around and under the eye. In Birmingham they try to get your eyes back to as near normal as possible. Cannot now remember the name of my NHS consultant except that he was Swedish, left handed and excellent. 

Silver_Fairy
Silver_Fairy in reply to Gilly81

Sorry, meant to ask, what did you have done? PM me if you dont want to put it on here.

Gilly81
Gilly81 in reply to Silver_Fairy

Augmented blepharoplasty for eyebags by peri-ocular debulking and soft-tissue orbital decompression. Eyelid surgery to correct eyelid retraction.

The fat that causes the swelling is the same fat that develops behind the eye and makes it protrude. They burn off this fat with a laser…it smells disgusting, I was awake for the operation. They used local anaesthetic with a nurse holding my hand. 

Silver_Fairy
Silver_Fairy in reply to Gilly81

Thank you Gilly  :)

Apparently, L Carnitine can help, dosage is 2,000 - 4,000mg daily. It didnt work for me, but, Im sure I took it at the wrong stage in my treatment (when I was going hypo because of too high a dose of Carbimazole)

Give it a try, you need to take enough though, and a 'good' product.  If you're in the UK you wont be able to get it on prescription.  If you start to feel hypo symptoms lower your Carbimazole dose.

Dont have RAI if you have TED as it is contra indicated.

I have read that active TED is supposed to last about 18mths but have also read a lot of personal statements to the contrary. I am supposedly in remission with Graves but I see my eyes changing on occasion.

I have taken L-Carnitine and I must say, I love this stuff.  I've never taken such a high therapeutic dose as is mentioned by some for a particular disorder, but I've taken it for  memory and alertness.  I have Acetyl-L-Carnitine (which I think is the better version) combined w/Alpha Lipoic Acid, and it is my go-to supplement when I need to stay awake, alert, etc. So it goes on road trips with me for sure or some event. I think each capsule has 3 or 500mg in it. It's used by me for cognitive purposes and seriously, it is great. It's one of those supplements that makes an immediate difference but you don't even realize it.  Body builders use this, but I have forgotten why. When I tell people about it they usually look at me like 'what the bleep is that?" So I doubt they try it, but it's great for anyone, esp people with cognitive memory issues. 

marvalrus
marvalrus in reply to marvalrus

I also take this alone, not combined w/Alpha Lipoic Acid.  Either way, it's a wonderful supplement most people don't think to use, same w/Alpha Lipoic Acid. Two great supplements combined. But using it separately, your Carnitine should have a vinegar type smell to it. If it doesn't then it's no good or not very pure. 

I have taken it too, almost from he beginning of the diagnosis and I believe 100% that it has helped me. 1,000 mg per day acetyl-l-carnitine. Can you afford to see a naturopath specialised in endocrine disorders? It is an amazing, liberating feeling to finally be able to talk to someone who understands your concerns and knows alternative methods of treating Graves. She also recommended taking NAC - n-acetyl-cysteine. The naturopath will look at the root cause of Graves - as it is an auto-immune disorder I believe we should all see an immune system specialist. I also was diagnosed with solar urticaria a few years before Graves - this is the first year I am not experiencing an allergic reaction in the sunshine (I've started the herb tonic in January this year). I have also contacted by email a researcher in the U.S.A who was looking at the effect of fish oil on reducing inflammation in Graves (Sarah McCoy) - I took high amounts of good quality fish oil (you need to build up to a High amt over a few Weeks as it can cause severe diarrhoea :-o), so I took a few different alternative remedies as I felt as if my world were falling to pieces after just having my second baby and realizing the constraints I was facing in breastfeeding with these anti-thyroid drugs. And The possible side effects :-o! Feeling much better now, almost off PTU as you need to come off slowly, very important not to stop them cold turkey! I am taking half of a quarter of a 50mg pill (I guess around 7-8mg every other day) and 5ml tonic every day. No Graves symptoms at all currently.

Just started taking acetyl carnitine. Have low TSH although T4s and T3s are good. I read it helps up the TSH. Do feel a bit more energetic and sleeping better. Too soon to tell if it will raise levles though

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