Thalassemia Patients and Friends
Discussion Forums => Diet, Nutrition and Supplements => Topic started by: Andy Battaglia on January 05, 2009, 04:07:26 PM
-
http://www.ncbi.nlm.nih.gov/pubmed/17031691
L carnitine for patients with thalassemia
Effect of L-carnitine on the physical fitness of thalassemic patients.
Ann Hematol. 2007 January. El-Beshlawy A, El Accaoui R, Abd El-Sattar M, Gamal El-Deen MH, Youssry I, Shaheen N, Hamdy M, El-Ghamrawy M, Taher A. Department of Pediatrics, New Children Hospital, Cairo University, Cairo, Egypt.
Poor physical fitness is a common problem among thalassemic patients. L-Carnitine plays an essential role in fatty acid beta-oxidation, a process especially important in the organs that preferentially use fatty acid as a source of energy such as the myocardium and the skeletal muscles. The main objective of this study is to assess the effect of the administration of oral L-carnitine on exercise tolerance and physical fitness in patients with thalassemia major. Thirty patients followed up at the New Cairo University Children Hospital were included in this study. Clinical, laboratory, and cardiopulmonary exercise testing were performed before and after 6 months of oral L-carnitine therapy (50 mg per kg per day). The oxygen consumption, cardiac output, and oxygen pulse at maximal exercise significantly increased after L-carnitine therapy. However, there was no significant change in minute ventilation and ventilatory equivalent of carbon dioxide. There was also significant increase in the blood transfusion intervals after L-carnitine administration. However, there was no significant change in hemoglobin concentration. L-Carnitine seems to be a safe and effective adjunctive therapeutic approach in thalassemic patients. It improves their cardiac performance and physical fitness. The younger the patients are, the higher is the degree of improvement in their exercise parameters.
Thals need to understand that it isn't just their Hb level that determines how well they feel and how well they do. The health of the blood vessels is extremely important and this will not show up in Hb levels. L-carnitine helps to prevent the loss of flexibility in blood vessels, which leads to PHT, and tremendous stress on the heart. I highly recommend L-carnitine as a supplement for thals.
-
Thank you for this information Andy, I will be sure to get a prescription for my son. I want to start him on L-carnitine as soon as possible.
Sharmin
-
Even after showing the numerous benifits of L- Carnitine my doc refuses to prescribe it :wah. Is it safe enough to be given without prescription?
maha
-
Maha, i guess it is safe, as i told you it could be even taken during pregnancy, but what is his point of view????????????
manal
-
One more thing i want to point to is that it is given 5 days in a week and you have two days off. Actually i don't know why,i will ask the hematologist and let you know
manal
-
I don't know about 5 days/a week, Manal. I take carnitine every day, the drinkable solution which I mix with a little water.
Lena.
-
Lena, i will be seeing the hematologist tomorrow and will ask her the reason for that, but ususally she makes sure that my son takes it 5days/week.
When we started it at the begining, it was everyday for one month, then the next month was 6 days per week and finally 5 days per week
until then stay well :hugfriend
manal
-
Manal,
I will definitely need your guidance when I get Lcarnitine for my son next month.
Sharmin
-
Sharmin, anything you need to ask about it let me know cause i will see the hema tomorrow, just anything let me know. By the way she was th head of the doctors who conducted all the studies regarding L-carnitine.
manal
-
By the way she was th head of the doctors who conducted all the studies regarding L-carnitine.
That is a great source. My questions have to do mostly with dosing, which I will ask you when I have purchased the supplement and begin giving it to him. From your earlier post I understand that I should be giving it to him every day for the first little way and then taper down to 6 and finally 5 days a week.
Thanks again Manal, I am so glad that I learned about this supplement from you. The more I learn about it the more I cannot wait to begin giving it to my son.
-
Sharmin, Lena and everyone
After asking doctor El Beshalawy about the reason for this dosing, she told me because they found in their studies that L-carnitine when taken daily causes depression of the bone marrow leading to aplasia and taking two days off avoid this to happen.
When i told her that some people take it daily, Dr. El Beshlawy said that they have to moniter their Hb and other blood products.
She said that another doctor in the States ( can not recall the name ) had the same result with his study of L-carnitine.
Andy, this year she will release her study about the positive effect of L-carnitine over PHT
All the doctor's studies are based on 50mg/kg but she told me that it can be taken up to 100mg/kg
I asked her if hydrea could lead to aplasia as found with L-carnintine, she said no because this is compansated by the induction of fetal Hb
By the way l-carnitinne release some fetal Hb too
manal
-
Dear Manal,
is there any place I can find this study by dr. El Beshlawi? I told that to my hemo and she asked if I could pass her this study because she had read a study by dr.El Beshlawi that praised the advantages of L-Carnitine. According to my hemo, who has also studied the subject, carnitine lessens the intervals between transfusions as well as prolongs the survival of red cells.
She was surprised by what I told her about only 5 days a week and asked for this study, if there is one.
Lena.
-
Lena, this does not at all contradicts with the benefits of L-carnitine and still Dr. El Beshhlawy praises it and insists on its importance. It is the way it is taken only which does not diminish anything of its benefits. I just want to make sure this note is clear
When i told her about you taking it everyday, she told me exactly that this is okay as long as you keep monitering all blood products
Next time when i see her i will ask her about any documented study about this finding
take care
manal
-
Do not worry Manal, everything is clear to me. I did not get it wrong.I know the importance of Carnitine. I only wanted to clear this up with my hemo and she responded immediately and wants to take it further.So please, if this is not much trouble with you, ask her for anything I can pass on to my hemo.
Shokran.
-
Hi Manal
L-Carnitine is not available here :wah. One of the stores had something called acetyl L-carnitine. How same or different is it from L-Carnitine. Could you tell me the name of the brand you use. It should be available in the UAE, and I could get it from there.
thankyou
maha
-
Acetyl-L-carnitine (ALCAR) is a form of L-carnitine and can be used. As a supplement, acetyl-L-carnitine (ALCAR) may be better absorbed than carnitine.
http://lpi.oregonstate.edu/infocenter/othernuts/carnitine/
L-Carnitine Supplements
While bioavailability of L-carnitine from the diet is quite high (see Dietary L-Carnitine), absorption from oral L-carnitine supplements is considerably lower. Supplemental L-carnitine is mainly absorbed by passive diffusion (1). According to one study, bioavailability of L-carnitine from oral supplements (0.5-6 gram dosage) ranges from 14%-18% of the total dose (5). Less is known regarding the metabolism of the acetylated form of L-carnitine, acetyl-L-carnitine (ALCAR); however, bioavailability of ALCAR is thought to be higher than L-carnitine. The results of in vitro experiments suggest that ALCAR is partially hydrolyzed upon intestinal absorption (10). In humans, administration of 2 grams of ALCAR per day for 50 days increased plasma ALCAR levels by 43%, suggesting that some acetyl-L-carnitine is absorbed without hydrolysis or that L-carnitine is reacetylated in the enterocyte (5).
For some further updates about L-carnitine, see my next post, Lipoic acid and acetyl-carnitine reverse iron-induced oxidative stress.
-
Thalassemia majors do want to suppress the bone marrow, while non-transfusing intermedias do not, so this distinction should be made in the context of taking L-carntine.
-
Andy,
Do you think Little Z should be taking L-Carnitine? This thal major and thal intermedia thing you said got me a bit confused :huh .
Is it correct that L-Carnitine is also used by body builders? If yes then it should be available here,,i'll have to search for it in the right places i guess.
Zaini.
-
Maha
This is the rand i use (syrup)
http://www.mepaco-pharma.net/html/Get-trades.asp
As Andy said it will be okay for you to use what you have in Saudi Arabia
If you want to ask about anything else, let me know
Zaini
All the studies made on L-carnitne were done on thal major patients and was found to have many important benefits which where mentioned above. What i know is that it is given to thal major and intermedias here and on the basis of 5 days per week
Yes, body builders also use it as L-carnitine improves atheletic performance too that is why you will find that little Z will be little more active when she takes it
manal
-
I found L-carnitine on my search, but I will not take it.
-
Dore, I am curious why you said you won't take L-carnitine.
-
Me too :huh
Zaini.
-
Dore, I am curious why you said you won't take L-carnitine.
I am sorry that I did not answer this last night. I checked my email from college and I was really upset plus angry.
Andy and Zaini, it is just a personal thought. I do not have any evidence. I got only my intuition. I just do not feel comfortable with the idea. I kow it sounds strange; ignore me ;)
-
Dear Dore,
You have every right to do what is comfortable for you. Everyone here just thought that perhaps you have some reason that you are aware of and the rest of us are not - any information we share helps all of our members here. Just as eveyone had wondered why I was breaking the exjade pills - and after some investigation I realized that it was best not to.
Your input is very important and it is though our differing views that we are learning.
Sharmin
-
Woulda L-carnitine effect teh effectiveness of exjade? desferal etc? my fertin is 1,400 doctor wants me to get a pick line and get an intreveinus desferal for a week or so.... then proceed with exjade my liver iron is 39 aparently thats too high?
-
L-carnitine would not affect chelators. Why does the doctor want to use a PIC line for one week of desferal? Unless your veins are in bad shape, it seems an unnecessary intrusion. Your liver iron is high and 24/7 desferal is the answer, but IV would be preferrable for short term.
-
My veins aret bad, cannula only last for 3 days or so. ive had 4 porta-caths in the past, 1st porta cath was a baby one since i was 2 so they replaced it with bigger ones.ever since the new ones they had either flipped,tube poped out of my skin on my neck and or infected. subcuts have scarred my for life and i refuse to move back to that stone age. ive had a desferal bottle through my port when i still had it, the desferal was one week on and one week off. then i moved to ferriprox but my dosage was 3 tablets 3 times a day and i always forget to take the mid day dose so that brought my ferritin up. i use to have a ferritin level of 200 a couple of years back. well i most probably have a couple of 24/7 intreveinus spread out during the year hopfully that will help bring down my ferritin. since my ferritin is 1400 how many weeks of 24/7 chelation should bring it down to 500 or so.
sorry this is posted in the wong section of the forum i just got carried away.
-
Hi Tyson ,
:welcomewagon to the family , i hope you wil find this community realy helping, caring and ecnouraging, as it is ... feel free to ask or share anything you want to share ...i hope you will get a good response and answer of our concerns/questions, its your own forum so dont hesitate to ask wat ever you wana know about ...
Best Regards
TAke Care
Umair
-
Dear Manal,
is there any place I can find this study by dr. El Beshlawi? I told that to my hemo and she asked if I could pass her this study because she had read a study by dr.El Beshlawi that praised the advantages of L-Carnitine. According to my hemo, who has also studied the subject, carnitine lessens the intervals between transfusions as well as prolongs the survival of red cells.
She was surprised by what I told her about only 5 days a week and asked for this study, if there is one.
Lena.
Lena
During my visit this month to Dr. El Beshlawy, she told me that she did not yet have this study published but Dr. George Attwa has done the same study and his findings about the dosage were mentioned in the ASH (American Society of Hematology) in 2006.
I will search for this abstract and let you know
manal
-
Hello...
I'm glad to hear the effects of L-carnitine to thal patients..but forgive me if i'm wrong,i tried to look for this supplement yesterday at the pharmacy but what i found out is L-carnitine is meant for weight loss supplement.furthermore,there's only one brand i found.can anyone suggest what brand should i look for?
Looking forward for your help!
Mel(mother to RAUL)
-
Okay, I've got Carnitine (Acetyl to be specific), what should be the dosage?
I've read on previous page of up to 50/mg per kg. That's quite high for my weight I think. So can I take at least 1000mg/day? Carnitine also is taken by bodybuilders to lose weight, so taking a little higher dose won't have any weight loss effect on me, or will it?
Sharmin, I see your post and that you're giving it to your son since 4 years or so now, so what's your experience? What's your dose that you give to little A?
Thank you,
-P.
-
Start with 1000 mg daily. 2000 is the most you need. Bodybuilders take as much as 30,000 mg daily and then we see the supplement banned without a prescription in countries like Canada, because the health authority sees abuse by bodybuilders and take it away from everyone.
-
Start with 1000 mg daily. 2000 is the most you need. Bodybuilders take as much as 30,000 mg daily and then we see the supplement banned without a prescription in countries like Canada, because the health authority sees abuse by bodybuilders and take it away from everyone.
Very true.