Thoughts on This Advice for Thalassemia Minor?

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Jan 12, 2020
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Well, I have thalassemia minor too. I emailed Ray a month or two and He gave the basic: shellfish, it D, Orange Juice etc, but to be careful with the calcium to phosphorus ratio. In regards to the post, most of the guidelines are just healthy approaches to everyone. But I felt better with 1mg (b12) and 1mg (b9) and 10mg (b6 p5P) daily, sublingual. Carnitine or anything that increases nitric oxide is regarded as harmful here. BUT I really don't If in our case would be an exception, for we have lower activity in this area. Special attention to things that decrease bilirubin, as aspirin and zinc, because we produce it more than others and this can cause some discomfort in the liver/gallbladder area.
 

vanessad

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Jan 29, 2021
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Well, I have thalassemia minor too. I emailed Ray a month or two and He gave the basic: shellfish, it D, Orange Juice etc, but to be careful with the calcium to phosphorus ratio. In regards to the post, most of the guidelines are just healthy approaches to everyone. But I felt better with 1mg (b12) and 1mg (b9) and 10mg (b6 p5P) daily, sublingual. Carnitine or anything that increases nitric oxide is regarded as harmful here. BUT I really don't If in our case would be an exception, for we have lower activity in this area. Special attention to things that decrease bilirubin, as aspirin and zinc, because we produce it more than others and this can cause some discomfort in the liver/gallbladder area.
Ty! I’ve been looking for info regarding Thalseemia! Do you take liquid iron?
 

davvid_1

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Jun 10, 2020
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132
i believe thalassemics should be very careful with extra iron unless you're shown to be deficient @vanessadaly .

@Lamp
i initially didn't try a lot of the supplements Andy recommended on that thalassemia forum but out of desperation have tried almost everything,

currently im taking vitamin E, Folate, Coq10, Glycine, and acetyl L carnitine. Im not sure which of these is working, but my hair shedding has almost completely stopped over the past 7 days (when i run my hand through my hair i usually lose ~5 hairs)

My current areas of research are:

glutathione efflux

Potassium efflux from the cell - which is associated with NLPR3 inflammasome & baldness (whole thread on this topic on this forum) - am wondering if taking potassium supplements would help


Generally combat oxidative stress (possisbly with Coq10)

Acetyl L carnitine - my understanding of NO is very limited and i know its not recommended here, but it seems it may be low for thalassemics.
 
Joined
Jan 12, 2020
Messages
80
i believe thalassemics should be very careful with extra iron unless you're shown to be deficient @vanessadaly .

@Lamp
i initially didn't try a lot of the supplements Andy recommended on that thalassemia forum but out of desperation have tried almost everything,

currently im taking vitamin E, Folate, Coq10, Glycine, and acetyl L carnitine. Im not sure which of these is working, but my hair shedding has almost completely stopped over the past 7 days (when i run my hand through my hair i usually lose ~5 hairs)

My current areas of research are:

glutathione efflux

Potassium efflux from the cell - which is associated with NLPR3 inflammasome & baldness (whole thread on this topic on this forum) - am wondering if taking potassium supplements would help


Generally combat oxidative stress (possisbly with Coq10)

Acetyl L carnitine - my understanding of NO is very limited and i know its not recommended here, but it seems it may be low for thalassemics.
Why Carnitine instead of Arginine or Citrulline?
 
Joined
Jan 12, 2020
Messages
80
no reason, just trying everything. Andy on that forum recommends carnitine.

Arginine or citrulline are superior?
Hard to say in our context. But iN GENERAL citrulline is best. I don't know if having arginase deficiency could impair the conversion of citrulline to arginine. I experimented with arginine direct to the scalp. You can feel immediately the blood flowing (I hope is blood flow). Arginine has a short half-life (like 2 hours).
 

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