Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: sighvang on May 01, 2009, 03:29:12 AM
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Anyone use L-Carnitine? Does it work? Does it help? Would you suggest it? I just bought a bottle..500 mg i'm about to take...is that too high?
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L-carnitine is a recommended supplement for thalassemia because of its nitric oxide inducing properties. Nitric oxide helps maintain the flexibility of blood vessels and the heart, thereby promoting circulation and and reducing stress on the heart. A dose of 400-1000 mg daily is suitable for an adult.
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Hi Andy,
I want to start giving my son L-carnitine . He is soon going to be a year old. What dose would be recommended for this age He is 10kg. Also is there a specific brand you would recommend ?Thanks
Zahra
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I am not comfortable recommending L-carnitine for children under age two. It has not been tested and I doubt the need in thalassemia at that age. I would wait until two years old minimum, unless prescribed by your doctor.
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I am currently giving my 10 year old son 500mg of L-carnitine. It was prescribed for him by his doc in Oakland. I don't know if one would notice any visible changes, however it provides help to the heart (as Andy said) by inducing NO. It is also a potent antioxidant.
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Hello
All the studies made on L-carnitine and thal were done on the basis of 50mg/kilo. L-carnitine MUST be given 5 days a week cause it was found that taking it daily, may cause bone marrow depression.
One last tip that i knew in the last conference, is that the effiency of L-carnitine is associated with taking folic acid
manal
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Welcome Manal,
We have discussed that before, but I tend to think that only thal intermedias must take carnitine 5 days a week, as their bonne marrow more or less functions. Thal majors like me with an inactive bonne marrow, can take carnitine every day. Of course you insisted before on the contrary, but it makes sense, doesn't it? Another thing to support my saying, is that folic acid is mainly given to intermedias. In majors its use is questioned.
Lena.
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Thanks Lena :hugfriend
The bone marrow is not responsile for the red blood cells only, but it is also responsible for all the other blood products (white blood cells, platletes,...) so though the bone marrow does not supply red blood cells in majors, it is still doing its job in supplying the other products so suppressing it may cause inadequate quantitiues of the other blood products leading to aplasia
As for folic acid, it is prescribed here in my country for all kinds of thal (major, minor, intermedia) as it has a tendency to increase the life of the red blood cell even if the patient is trasfusion dependent.
Also folic acid is important in many aspects,one important thing as i said before is that it must be taken with the L-carnitine in order for it to work effiently. Also folic acid helps decreasing the risks of heart disease, stroke, decrease chances of cancer, increase fertility in both men and women, defieceny of folic acid is said to cause depression, folic acid can correct B12 ,.........
So it has other very important functions if we are not going to consider increasing the life of red blood cells.
The nice thing about folic acid to is that it has almost no risk of toxicity cause it is water-soluble and any exces of it is washed ouside the body
Hope this helps
manal
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Thank you Manal, your info sure help. In Greece we used to take folid acid in the past, but now doctors do not suggest it and Greek patients do not take it any more. My hema explained to me why but I cannot remember it now. As for bone marrow, yes, I hadn't thought about the other products that it supplies. Yes, that makes sense.
Lena.
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You are welcomed dear :hugfriend
manal
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I got to know the L-carnitine topic quite thoroughly.
There are some things that I'd like to point out/ask about:
- L-carnitine is not toxic even in very high doses (less toxic than salt) - but I would not recommend it to very young children - see side effects below
- side effects, especially if taken in one high dose: diarea, feeling hot, high blood pressure, feeling of too much energy. The first side effect was caused by the dose of 3000 mg a day, the other side effects occured when I took L-carnitine for the first time, the dose was only 1000 mg - and I thought I would have a heart attack then... These all side effect subside completely (usually) when your stomach gets used to L-carnitine...
- L-carnitine is very quickly eliminated from the bloodstream - 1 hour and it is out. So it seems it's best to take it in divided doses. Unfortunetely this is something not presented in official guidelines, and it is even difficult to find on the net. What do you think about it...?
- L-carnitine provides energy to the muscles (also heart muscle), as it promotes fat oxidation. So when you are tired and have no energy, L-carnitine may help. It also allows you to work harder and longer physically without having cramps&muscle pain.
- The cheapest brand of L-carnitine is Puritan's (anyone found cheaper?) and it is convenient as these are tablets. Sometimes L-carnitine comes as liquid, and it may be cheaper then, but this form is not convenient.
Guess that's all for now.
B.
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Hi Bigg
L-carnitine is very quickly eliminated from the bloodstream - 1 hour and it is out
''L-carnitine is readily absoarbed, the maximal concentration is reached after 4 hours, L-carnitine is eliminated in urine, its half-life is nearly 15 hours''
This is what written on the leaflet of my L-carnitine (syrup)
manal
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Hm, here is some research in this matter:
http://www.wipo.int/pctdb/en/wo.jsp?wo=1995005168&IA=WO1995005168&DISPLAY=DESC
Because the half-life L-carnitine in the human is approximately 30 minutes, the usual dosage regimen is to administer an excess amount of L-carnitine four times each day.
It's just something to be aware of... it doesn't hurt to take L-carnitine in 2 divided doses for example, not 1. This research does not concern exactly blood disorders, but the conclusions may be applied, I guess...
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I wonder which half-life we believe, the 30 minutes or the 15 hours :huh :huh
manal
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Well, I need to take L-carnitine because of the muscle problems that I have - something similar to what is described in the quoted article.
If I don't take it, I can feel it in the muscles. I can feel, that after 4 hours carnitine is gone for good - so for sure it is not 15 hours...
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While the half life of L-carntine has been tested at around 15-17 hours, the half life of acetyl L-carnitine is less than 1/3 of that, with a half life of around 4 hours. However, we have someone who is an expert on the use of L-carnitine in Bigg, whose health issues are directly affected by L-carntine in a dramatic way. Just as I feel that my experience with the use of vitamin C twice daily for close to 35 years tells me that regardless of what anyone may say about half life, my experience tells me that vitamin C does indeed need to be replenished more than once per day. (It is one of my greatest disappointments in working with thal patients that I cannot recommend much vitamin C, because it would be of such value for so many of the problems thals encounter but they are unable to take it because of its iron enhancing properties. I do believe that one day, researchers will find a way around this paradox).
On the subject of L-carntine, I will definitely defer to Bigg as far as its actual use and how to use it to its highest level of effectiveness.
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Hi Manal
What should be the dose for a 3 year old. The L-carnitine I have has appx 33.33gm/ml.
thankyou
maha
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Hello Maha
All the studies made on thal and benefits of L-carnitine were made on the dose of 50mg/kilo diveded to two or three times a day.
This is the dose i give to my son. But the important thing is that it MUST be given 5 days in a week and you have two days off.
In the Egyptian conference, Prof. El Beshlawy gave a very informative lecture on its usage with the PHT patients and how it has improved their conditions. Also in Syria, the Iranian doctors are starting using it with their patients too
Good luck with it Maha
manal
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However, we have someone who is an expert on the use of L-carnitine in Bigg,
Heh, let's not exaggerate with this expert knowledge. I just employ common sense in what I do, where experts and doctors follow strict guidelines and turn their common sense off. Often these guidelines are old or simply do not match the disease exactly... So it's just a common sense to take L-carnitine 2 times a day instead of one - it won't hurt, and it may help somehow - before any researcher can even get to it.
(It is one of my greatest disappointments in working with thal patients that I cannot recommend much vitamin C, because it would be of such value for so many of the problems thals encounter but they are unable to take it because of its iron enhancing properties. I do believe that one day, researchers will find a way around this paradox).
Hm, about that... a little brain teaser for Andy...
I was wondering about absorbability of vitamin C.
If vitamin C promotes iron absorbability, then what about taking it in shots?
When it is taken orally, it is in high concentration in stomach, when taken in shots - there would be low concentration and no vitamin C in stomach, only in bloodstream...
But shots are somewhat dificult to use. So the next idea is to use it sublingually and to wash your mouth after it dissolves under tongue. However I have no data concerning sublingual absorbability, or mechanism of iron enhancing properties and it would probably take a long time to search for the data, so that's the brain teaser for you Andy...
B.
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Same "absorbtion problems" concern vitamin D, although these problems do not affect many people (one study showed that less than 1% of people taking vitamin D is affected). These "absorbtion problems" are one of the causes, why hipercalcemia may occur. Local increase in concetration of vitamin D in intestines causes higher calcium absorbtion. If your calcium absorption regulation system (hormones, parathormone is the most importane) does not work well, it may cause you some problems. The simplest solution, like home remedy actually, is to take vitamin D in divided doses and not to eat diary and calcium supplements while doing vitamin D supplementation. This is at least recommended when starting vitamin D supplementation to give calcium absorption regulation system some time to readjust (without vitamin D a lot of parathormone is produced, with vitamin D it's production has to be reduced, and this is not always that easy for parathyroid). You may take your calcium supplements in normal dose later, after one month for example. Stopping calcium supplementation should not be a problem, of course if you are not severely deficient (osteoporosis, etc.). This simple approach would probably knock the aforementioned 1% of side effects to 0,1%...
B.
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Hi Manal
Hassan weighs 14.5kg and on the basis of 50mg/kg, the dose would be a huge 725mg. Considering the adult dosage as written on the bottle as 1000mg /day isn`t 725mg just too much for a 3 year old. Would it be useless if I decide to give 200mg or so.
thankyou
maha
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Don't worry Maha. It is even given at 100mg/kilo but as i told the research concerning thal was given on the basis of 50/mg.
Many children i know and including my son are prescribed by this dose. Ahmad is taking 1000mg daily divided to 2 doses
manal
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There is a second problem with vitamin C in thal majors besides adding to iron absorption. Large amounts of C can mobilize more free iron in the blood which can lead to reduced heart function. For this reason, thals with high iron loads have to be very careful about taking even the small amounts of vitamin C that are often taken along with desferal. Umair has told us about having had this experience when his iron load was quite high. So, even taking vitamin C by IV could pose a danger to thals in terms of reduced heart function.
And back to the half life issue. I do think we need to pay attention to the real life experience of people using supplements. Not much is known about how most chemicals work in the body and just because a test shows a certain amount in the bloodstream, it does not mean that the bloodstream is where ALL the effect of that chemical takes place. Much of the need for some nutrients takes place in the digestive system and once its absorbed by the blood, these functions have already taken place. I don't think we can rely on half life measurements to make our decisions. There is a good example of how the body actually works in the iron overloaded thals. Even though there may be a tremendous iron load already in the body, the gut will absorb even more iron from food because that iron is more easily directed towards the immediate needs of the body, even though the organs may be swimming in iron. Quite often, the need for the nutrient is in the digestive system and once the nutrient has passed through digestion these functions cannot take place so the need for that nutrient is renewed.
Bigg, I will continue to defer to your experience using L-carnitine because your condition is directly affected by L-carntine and your experience in how to use it to its maximum advantage is something we will never get from measurements. It is something that can only be found through actual use.
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The use of L-carnitine is strongly recommended by the center in Oakland. We have seen positive results in lil A since we began using it. It is difficult to associate it with lil A's hg because other factors have affected his hg, but his LVEF has increased from February 2009 to July 2009. I think that it is beneficial to his cardiovascular health.
Currently, he is getting it 5 days a week.
Sharmin
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I know this is an old post, sorry for reviving it :)
Is L-Carnitine something you should give to your child on a doctors recommendation only? Can I try a low dose of 500mg a day with my almost 3 yr old son? What would you guys suggest? He is 10.8 kg.
Is it in tablet form or syrup? Do you know if its available in all countries or should I try getting it online?
Thanks for your advice!
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L-carntine and L-arginine are both available in liquid form. Search google for "l-carnitine liquid". These are naturally occurring substances that are already found throughout the human body. They are instrumental in fixing nitric oxide (NO). NO is essential for the health of all blood vessels and the heart. NO helps to maintain the flexibility of the blood vessels, making it easier for blood to flow throughout the body, thus lessening the stress on the heart.
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I have started taking L-Caritine along with Folic acid. I will give it 30 days and let you know.
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Any side effect on this whether this would increase Uric acid in body?
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Research shows that L-carnitine lowers uric acid levels in the body. Also, its importance in heart and circulatory function is immense for thals, especially as they age.
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Research shows that L-carnitine lowers uric acid levels in the body. Also, its importance in heart and circulatory function is immense for thals, especially as they age.
Andy, when you are free can you point me to this research article.
We are in the process of working on many different uric acid reduction use cases and I would like to add this to some potential research documents.
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I can't find the source I mentioned, but this explains the suspected correlation between uric acid levels and low carnitine levels.
http://journals.plos.org/plosgenetics/article?id=10.1371/journal.pgen.1000504
In spontaneously hypertensive rats, L-carnitine decreases serum UA levels and the age-dependent rise in serum UA [31],[32]. Kidneys absorb 95% of carnitine from the glomerular filtrate via an active Na+-dependent transport mechanism [33]. Impairment of this reabsorptive function can lead to carnitine deficiency, in which hyperuricemia may be present because carnitine competes for renal tubular excretion
Interestingly, at least two patents have been applied for for potential treatments for gout, based on L-carnitine.
https://www.google.ch/patents/US20080249168
https://www.google.com/patents/EP2147671A1?cl=en
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Hello Andy,
Please share thalassemia patients who needs regular transfusion L-Carnitine help them to increase HB level or only for other health benefits ?
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L-carnitine has many benefits. It is a good antioxidant that helps blood last longer and also helps protect the body from the damage that free radicals do. It also helps to fix nitric oxide in the body, which is very important for the heart and circulatory system. Nitric oxide is needed to keep blood vessels flexible, so blood can move through them more easily, which also reduces how hard the heart has to work to pump blood.
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Thanks Andy for the helpful reply.
So may I try it for my 4 yrs old child.
You know she have earlier seizure disorder (last 3 yrs fully seizure free),ADHD/Moderate ASD and Verbal Apraxia.
She is very much active,intelligent,good skill of receptive language but still not improve her speech.
Please advice and if you think she can take then recommend the dose..
Thank You :)
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She can use a child's dose of L-carnitine. Hopefully, as she grows older, speech therapy will be of more value for her. Make sure you talk to her a lot and show her the names of things.
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Thank you Andy.
Please recommend a good brand for L-carnitine and dose also.
Dear Andy,
Please suggest a vitamin name which contains magnesium,calcium,B6 and Zinc.
I am searching this type of vitamin for my daughter hyperactivity.
If you have idea please advice. :)
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It's very difficult for me to recommend brands of supplements for those outside the US, as I do not know what is available in your areas. It is better to provide links for the products to ask my opinion about them.
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Hello Andy,
You can suggest me any brand or name of USA. I will purchase from online as wheatgrass from Puritan as you earlier advised.
Thank you.
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There are many brands that are equal. If you can show me a link to a product, I can advise if it's suitable.