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Thalassemia Major / pro-oxidant/antioxidant balance
« Last post by ironjustice on February 23, 2024, 03:15:57 AM »
The association of pro-oxidant/antioxidant balance and blood parameters in patients with beta-thalassemia major: a cross-sectional study
https://www.bloodresearch.or.kr/journal/view.html?doi=10.5045/br.2023.2023174
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The Spotlight / Re: COVID-19 vaccine
« Last post by Sara M on November 30, 2023, 03:27:05 PM »
I'm thal. minor, 66 years old. I've had the Phizer shots, and the most recent one was Moderna. Nothing but a slightly sore arm for a day or so.
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The Spotlight / Introduction
« Last post by Sara M on November 30, 2023, 03:25:14 PM »
Hi, I just recently found this group. I'm 66 and was told long ago (by a Dr. after having bloodwork done) I have thal. minor. My mother and her mother also had it and both my mother an I were only children due to the problems that occured during pregnancy. I never had kids. My mother would become slightly anemic from time to time, though I never have that I'm aware of. I'm curious about how it relates to Covid and other contagious diseases. Although I'm in great health overall, I've never had what people call a "little" cold. Any kind of virus was always a long ordeal. I've avoided Covid thus far but I know the odds are stacked against me, even though I'm vaccinated. My maternal side is Italian and I remember how Covid swept through Italy at the beginning of the pandemic. Are there any studies showing correlation with thalassemia?
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Then I asked ChatGPT 4 if he agrees, or not, with my list of substances to increase nitric oxide, and if he wants to add any more.

ChatGPT 4:

Nitric oxide is an important molecule in the body that plays a key role in vasodilation (the expansion of blood vessels), which can improve circulation and cardiovascular health. Here's what I know as of September 2021 about the substances you mentioned:

Nitrite: Yes, nitrite can be converted into nitric oxide in the body under certain conditions.
Arginine: Yes, arginine is an amino acid that is used directly in the production of nitric oxide.
Citrulline: Yes, citrulline is converted into arginine in the body, which can then be used to produce nitric oxide.
Ornithine: Ornithine isn't used directly to produce nitric oxide but it's involved in the urea cycle with arginine and citrulline.
Testosterone: There's no solid evidence as of my last update (September 2021) suggesting it directly increases nitric oxide levels.
Norvaline: There are some preliminary research suggesting it might increase nitric oxide levels by inhibiting an enzyme called arginase, but more research is needed to definitively confirm this.
Sildenafil: It doesn't directly increase nitric oxide levels but rather enhances its effect by inhibiting an enzyme called phosphodiesterase type 5 (PDE5).
Resveratrol: Some research suggests it may increase nitric oxide levels, but it's not entirely clear how it does this and whether this effect is significant.
Pycnogenol: Some research indicates that it might help increase nitric oxide levels by promoting activity of endothelium (the inner lining) of arteries.
Vinpocetine: There's no solid evidence as of my last update (September 2021) suggesting a direct increase in Nitrous Oxide level due to Vinpocetine.
Vitamin C: Vitamin C could potentially help maintain high NO, either by enhancing its synthesis or reducing its breakdown.
Cinnamon: While some studies have suggested cardiovascular benefits associated with cinnamon, there isn't enough scientific evidence backing a direct effect on Nitric Oxide production.

Some other substances that might boost your body’s production of NO include dietary nitrates (found in foods like beetroot and spinach) and certain antioxidants such as vitamin E However, you should always consult a healthcare professional before starting any supplement regimen.
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Furthermore, since my English is bad, I asked chatGPT to rewrite my old post better:

First, this post by Andy is a good reference for addressing specific nutritional needs in thalassemia minor.
https://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774


IRON

Clearly, iron levels (ferritin and serum iron, I believe) should be monitored in laboratory tests. This is important to determine whether one should avoid foods with higher iron content or not. It may not seem so, but some foods such as turmeric, sunflower seeds, or lentils have high iron content, and in thalassemia, it's absorbed very efficiently, in a detrimental way. Of course, you have to be very cautious with multivitamins that contain iron (most of them).

GLUTATHIONE (important endogenous antioxidant enzyme)

I've read studies indicating that glutathione is somewhat reduced in thalassemia minor. In theory, the most effective, affordable, and proven supplement to increase glutathione is NAC (N-acetylcysteine). Combining NAC with zinc, selenium, and vitamin C can probably normalize glutathione levels easily. Quality protein supplements also increase glutathione. Then there shouldn't be any issues with glutathione.

CARNITINE

I've also come across studies indicating that the amino acid carnitine is reduced by 30 to 40% in thalassemia minor. This percentage may vary depending on the study. This seems concerning to me because carnitine is critical for transporting fatty acids into the mitochondria for energy conversion. Deficiency can lead to symptoms such as dizziness, muscle weakness, and fatigue. I don't understand the reason for the reduction in carnitine. Some theories suggest that carnitine may bind to excess iron in the blood to form less toxic compounds. In other words, the body sacrifices useful carnitine to protect itself from the toxic effects of free iron released into the blood. This is just a theory. Fortunately, carnitine deficiency can be easily and affordably treated with carnitine supplements. I think L-acetyl carnitine is the best form, although L-carnitine tartrate will also work.

I suggest to take L-acetyl carnitine in two doses daily at breakfast (500 mg) and lunch (500 mg).

Determining and Surveying the Role of Carnitine and Folic Acid to Decrease Fatigue in β-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


ARGININE AND NITRIC OXIDE

I've also found studies showing that nitric oxide is significantly reduced in thalassemia minor, which is quite alarming. In theory, this reduction in nitric oxide can lead to poor vasodilation, weakened endothelial function, reduced collagen, lower physical endurance, heart problems, hypertension, and specifically pulmonary hypertension. I believe that paleness is mostly due to lower hemoglobin, but low nitric oxide levels may also explain, to some extent, the pale, dull-skinned appearance.

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


Dysregulated Arginine Metabolism and Cardiopulmonary Dysfunction in Patients with Thalassaemia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4452408/


In this case, the reason of reduced arginine levels seems clearer than the mysterious carnitine deficiency. When red blood cells rupture, which occurs more frequently in thalassemia, they release the enzyme arginase, among other components, such as toxic iron. Red blood cells contain a significant amount of arginase, as is already known. This arginase enzyme converts arginine into ornithine, preventing arginine from being converted into the necessary nitric oxide. In theory, the correct treatment could be an arginase inhibitor, but there is nothing cheap and reliable available, only experimental options.

Here's a list of foods rich in arginine:
https://www.researchgate.net/figure/Main-Food-Included-in-Arginine-Enriched-Diet-Diet-1_tbl1_38009952

Here is a list of substances that can increase nitric oxide:
nitrite, arginine, citrulline, ornitine?, testosterone, norvaline, sildenafil, resveratrol, pycnogenol, vinpocetine, vitamin C, cinnamon

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Disclaimer: I have not consulted with "turtle" doctors. I do my own research, carefully check if it "seems safe", and then experiment on myself. By the way, I wish I had doctors who bothered to investigate, because they just prescribed me iron or told me there is no treatment.


I've been theorizing about how certain health issues in thalassemia are related to arginine metabolism.

This theory is not accepted (or denied) by the scientific community. My theory is simply as follows:

A person with thalassemia minor has a slightly lower level of hemoglobin, but that doesn't justify feeling so unwell, except when engaging in strenuous physical activity. The reason for the discomfort may be related to the faster depletion of certain nutrients and the substances released into the bloodstream due to the slightly higher frequency of red blood cell breakdown (subclinical hemolysis).

One of these released components in the red blood cell breakdown is arginase, the enzyme that converts arginine into ornithine, preventing it from converting into nitric oxide.

Arginase regulates red blood cell nitric oxide synthase and export of cardioprotective nitric oxide bioactivity
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3773799/
Excerpt from the study: "We show that red blood cells contain arginase that inhibits nitric oxide export."


I've been experimenting on my own by taking L-norvaline.
Norvaline was discovered in the first half of the 20th century, is produced synthetically, and is used by some athletes. This has few studies. Probably no pharmaceutical company is going to investigate further because it is not patentable. But after so much time, it should be clear that it is not toxic.
Norvaline is a "useless" amino acid that closely resembles arginine, so arginase binds to norvaline (like a decoy), theoretically rendering that arginase useless as well.
In theory, this is a way to reduce the level of arginase in the body.

First, I take a 400 mg norvaline pill per day, and an hour later, I also take arginine, and then I eat normally.

What have I noticed by taking norvaline and arginine, among other things?
I feel better circulation. My appearance has also gradually changed over years. I've gone from looking thin and having little muscle tone, to having a healthier, fibrous and more strong appearance. No more dizziness or weakness. I haven't tried running to check if my endurance improved because I don't feel like it. Although I guess it's still bad because the hematocrit and hemoglobin remain lower. But I'm fine while sitting, walking or working.


Some interesting studies about L-norvaline in animals:

L-Norvaline, a new therapeutic agent against Alzheimer's disease
https://pubmed.ncbi.nlm.nih.gov/31089055/

Antihyperglycemic activity of L-norvaline and L-arginine in high-fat diet and streptozotocin-treated male rats
https://pubmed.ncbi.nlm.nih.gov/35398371/

Arginase inhibition alleviates hypertension in the metabolic syndrome
https://bpspubs.onlinelibrary.wiley.com/doi/pdf/10.1111/bph.12144
Excerpt from the study: "In conclusion, arginase inhibition by citrulline, norvaline or ornithine alleviates hypertension associated with metabolic syndrome by direct and indirect protective mechanisms. The direct protective mechanism is through maintenance of endothelial-dependent relaxation and NO generation, while the indirect mechanism is through inhibition of insulin resistance and hypertriglyceridaemia."
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Thalassemia Minor / Re: Blood work for my son
« Last post by VB on October 06, 2023, 03:51:53 PM »
Thanks. We are trying to increase sunlight time.

For folate, he takes this  : "Doctor's Best Fully Active Folate 400 with Quatrefolic®️ contains Quatrefolic®, the glucosamine salt of (6s)-5-methyltetrahydrofolate". It takes 1 pill everyday, which is 400 mcg.

We are giving eggs/chicken. But not yet red meat. We will add Lamb for that.
We are not giving any Liver yet.
He does get milk.

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Thalassemia Minor / Re: Blood work for my son
« Last post by TonyF on October 06, 2023, 01:43:50 AM »

Make sure he gets sunshine a few times a week at least in the summer, natural vitamin D formed from sunlight is way better than supplemental D(thought thats better than nothing).

Also supplement with some folate(not folic acid).

What does his diet look like? Id ensure he eats high nutrient dense foods and enough protein daily.
red meat regularly, eggs, other proteins too.
Also liver and or shellfish once per week as those have super high nutrient density including iron.
Milk or yoghurt too if milk products isnt an issue.


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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!!
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