Thalassemia Patients and Friends

Discussion Forums => Thalassemia Minor => Topic started by: mgk on March 16, 2016, 02:52:14 AM

Title: Anyone else have Thalassemia Minor & G6PD Deficiency?
Post by: mgk on March 16, 2016, 02:52:14 AM

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Title: Re: Anyone else have Thalassemia Minor & G6PD Deficiency?
Post by: Dori on March 20, 2016, 12:11:16 PM

Hello MGK,

I have another enzymopathy. Through http://www.enerca.org/anaemias/33/glucose-6-phosphate-dehydrogenase-deficiency (http://www.enerca.org/anaemias/33/glucose-6-phosphate-dehydrogenase-deficiency) I found four patient organizations on http://www.orpha.net/consor/cgi-bin/SupportGroup_Search_Simple.php?lng=EN&LnkId=670&Typ=Pat&fdp=y&from=rightMenu (http://www.orpha.net/consor/cgi-bin/SupportGroup_Search_Simple.php?lng=EN&LnkId=670&Typ=Pat&fdp=y&from=rightMenu)
My advise is to contact each of this patient organisation groups. Maybe they have members who are G6PD and thalassemia minor.
Did you search on g6pd on this site? There has been a woman from India with thalassemia minor who had similar problems as you. You might want to search for her aswell.
Best of luck!!

Title: Re: Anyone else have Thalassemia Minor & G6PD Deficiency?
Post by: Ruthus K. on April 20, 2016, 10:03:52 PM

 As you always advocate L-carnitine to have more energy, well, see this:

after watching "In defense od food", I will never eat too much red meat or carnitine!

l-carnitine, a trimethylamine abundant in red meat, also produces TMAO and accelerates atherosclerosis in mice.  see http://www.nature.com/nm/journal/v19/n5/full/nm.3145.html

Title: Re: Anyone else have Thalassemia Minor & G6PD Deficiency?
Post by: Andy Battaglia on April 21, 2016, 03:19:36 AM

Regardless of the immense faults of that study, you're completely ignoring the added need for L-carnitine in people with thalassemia, due to depletion.

I really hate how the media is always so quick to promote bad science or in some cases, no science. The media jumped all over this story, but another study published a few days later gave a totally opposite report about the value of L-carnitine. A study of mice genetically engineered to have heart disease were fed an unnatural diet high in red meat. How does this relate to human beings? Well, we don't know because they ran no controlled study of humans who are not genetically engineered to have heart disease. They looked at 6 humans and then made assumptions. This is not science. There are a host of articles about the value of L-carnitine that show its benefits that are based on studies of humans. The link to the other study is below. I have seen similar hatchet attacks by the media on Vitamin E and vitamin D. I will also mention that being a vegetarian, I never recommend red meat to anyone, and often tell people to minimize their consumption of red meat.

You are free to follow any course you choose.


Here are some commentaries on this "study." http://jonbarron.org/heart-health/acetyl-l-carnitine-supplements-and-heart-disease#.VxgfMvkrKHs
https://heartmdinstitute.com/diet-nutrition/carnitine-still-good-in-my-book/
Here is the study about L-carntine published a few days after the the other study. https://www.elsevier.com/about/press-releases/research-and-journals/l-carnitine-significantly-improves-patient-outcomes-following-heart-attack
L-Carnitine Significantly Improves Patient Outcomes Following Heart Attack