Thalassemia Patients and Friends

Discussion Forums => Thalassemia Minor => Topic started by: ludo on April 29, 2023, 08:43:03 PM

Title: On the nutritional needs in thalassemia minor, based on reliable science
Post by: ludo on April 29, 2023, 08:43:03 PM
This post by Andy is a good reference to compensate for the specific nutritional needs in thalassemia minor.
https://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774 (https://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774)

From the investigation that I did on my own, I would like to comment on a few things.
If I'm wrong about something, I'm happy to be pointed out. My intention is to learn.

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IRON

Obviously the iron level (ferritin and sideremia I think) should be monitored in laboratory tests. This is important to know whether OR NOT one should avoid foods with higher iron content.
It seems not, but some foods such as curcuma longa, sunflower seeds or lentils have a lot of iron, and in thalassemia it's absorbed very efficiently, in a bad way.
Of course you have to be very careful with multivitamins that contain iron (the majority).

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GLUTATHIONE (important endogenous antioxidant enzyme)

I read studies that indicate that glutathione is somewhat reduced in thalassemia minor.
In theory, the most effective, cheap and proven supplement to increase glutathione is NAC (N-acetylcysteine).
Combining NAC, zinc, selenium and vitamin C, you can probably normalize that glutione level easily.
Quality protein supplements also increase glutathione.

As for glutathione, there should be no problem.

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CARNITINE

I have also read studies that the amino acid carnitine level is reduced between 30 and 40%. The percentage may vary depending on the study.
https://www.researchgate.net/publication/235785953_Determining_and_Surveying_the_Role_of_Carnitine_and_Folic_Acid_to_Decrease_Fatigue_in_b-Thalassemia_Minor_Subjects (https://www.researchgate.net/publication/235785953_Determining_and_Surveying_the_Role_of_Carnitine_and_Folic_Acid_to_Decrease_Fatigue_in_b-Thalassemia_Minor_Subjects)

This seems serious to me. Carnitine is critical for the transport of fatty acids into the mitochondria to convert into energy.
Deficiency can give symptoms such as dizziness, muscle weakness, tiredness, etc.
I don't understand what is the reason why the carnitine is reduced. Some theories indicate that perhaps carnitine binds to excess iron in the blood to form less toxic compounds. That is, the body sacrifices its useful carnitine to protect itself from the toxic effects of the free iron released in blood. It's just a theory.

Fortunately, this is easy and cheap to treat with carnitine supplements. I think the best is in the form of L-acetyl carnitine, although L-carnitine tartrate will also work.

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ARGININE AND NITRIC OXIDE

I have also read studies showing that nitric oxide is reduced in thalassemia minor. Or rather: it is alarmingly reduced.
https://www.researchgate.net/publication/26572770_The_levels_of_nitric_oxide_in_beta-thalassemia_minor (https://www.researchgate.net/publication/26572770_The_levels_of_nitric_oxide_in_beta-thalassemia_minor)
https://jag.journalagent.com/tjh/pdfs/TJH_27_1_53_54.pdf (https://jag.journalagent.com/tjh/pdfs/TJH_27_1_53_54.pdf)

In theory, this reduction in nitric oxide can cause poor vasodilation, endothelial weakness, collagen reduction, less physical resistance, heart problems, hypertension, and specifically pulmonary hypertension.
I think the paleness is mostly due to lower hemoglobin, but low nitric oxide may also explain, to a lesser extent, the pale, dull-skinned, slightly haggard appearance.

In this case, the reason for the nitric oxide deficiency seems to be mainly due to a lower level of the amino acid arginine in thalassemia minor.
The cause of less arginine does seem to be clearer than the mysterious carnitine deficiency. When red blood cells rupture, which happens more frequently in thalassemia, they release the enzyme arginase, among other components such as toxic iron. By the way, red blood cells contain a lot of arginase as is already known. This arginase enzyme converts arginine to ornithine, preventing arginine from being converted to the necessary nitric oxide.
In theory, the correct treatment could be an arginase inhibitor. But there is nothing cheap and reliable, only experimental stuff.

So the alternative treatment is to increase the level of nitric oxide by other means. Here is a list of substances that increase nitric oxide sorted by power:
Nitroglycerine, Nitrite, L-arginine, Citrulline, Sildenafil, Resveratrol, Pycnogenol, Vinpocetin, Vitamin C, Cinnamon

Personally, the most effective and cheapest way is to me a combination of L-arginine supplementation, increased arginine-rich foods, vitamin C (protects endothelium and reduces consumption of NO) and maybe a little cinnamon (stimulates the NO synthesis). And resveratrol or pycnogenol if you are richer. Indeed, any potent antioxidant reduces consumption of NO (like astaxanthin, but it's experimental stuff).

List of foods rich in arginine
https://www.researchgate.net/figure/Main-Food-Included-in-Arginine-Enriched-Diet-Diet-1_tbl1_38009952 (https://www.researchgate.net/figure/Main-Food-Included-in-Arginine-Enriched-Diet-Diet-1_tbl1_38009952)

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There is also the matter of fetal hemoglobin stimulants like resveratrol and others. But I will not go into that so experimental topic.
Title: Re: On the nutritional needs in thalassemia minor, based on reliable science
Post by: VB on April 30, 2023, 01:03:19 AM
Thank you for this post and sharing your research.

One question on IRON. You mentioned iron levels should be monitored. Is that true for Thal Minor also or for Thal Majors ? Do Thal Minor need to be careful about iron-containing foods ?
Title: Re: On the nutritional needs in thalassemia minor, based on reliable science
Post by: Andy Battaglia on September 09, 2023, 08:07:35 PM
What I would point out is that all humans need iron, and that there are many thal minors with iron deficiency, more commonly in females than males. Iron from veg foods is not well absorbed, and no more than 40% of the available iron is absorbed, as opposed to the very high percentage of iron that is absorbed form meat. I never advise avoiding most veg sources of iron.
Both carnitine and arginine have very similar properties and both can help fix nitric oxide in the body. This is extremely important to the health of the circulatory system.
Title: Re: On the nutritional needs in thalassemia minor, based on reliable science
Post by: Andy Battaglia on September 09, 2023, 08:08:59 PM
If the diet does not include high amounts of meat, I see no reason to regularly monitor iron in thal minors. As with all of us, it should be tested annually to make sure the iron level is in range and not too high or low.
Title: Re: On the nutritional needs in thalassemia minor, based on reliable science
Post by: VB on October 04, 2023, 07:04:13 PM
If the diet does not include high amounts of meat, I see no reason to regularly monitor iron in thal minors. As with all of us, it should be tested annually to make sure the iron level is in range and not too high or low.

hi Andy,

Regarding monitoring iron levels every year, could you kindly comment on my son's blood work on this post ?

https://www.thalassemiapatientsandfriends.com/index.php/topic,6181.0.html

We REALLY need to help with more growth.

Thank you!!