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41
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

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

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://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

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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.
42
Thalassemia Minor / Re: Supplements for thal minor
« Last post by VB on April 26, 2023, 09:47:57 PM »
hi Andy,

Kindly suggest on my post. We are really hoping for our son to put on more height and weight.

Thanks!
43
Thalassemia Minor / Re: Iron-rich foods for thal minor
« Last post by VB on April 26, 2023, 09:46:55 PM »
hi Andy,

Hope you are well. Please suggest on my post. We are really hoping for our son to put on more weight and grow.

Thanks!!
44
Thalassemia Minor / Iron-rich foods for thal minor
« Last post by VB on March 27, 2023, 03:26:08 AM »
Hello everyone,

One of the naturopaths has recommended Bilva or Bael fruit for my son (https://www.netmeds.com/health-library/post/bael-medicinal-uses-therapeutic-benefits-for-skin-diabetes-and-supplements).

Apparently, this fruit is high in Iron and has other benefits. Is it OK to give Iron rich foods or supplements for thal minor ?

Thanks!
45
Greetings / Re: Remembering Lisa on Her Birthday
« Last post by JV on March 24, 2023, 12:16:37 PM »
Well said Andy. God bless...
46
Greetings / Remembering Lisa on Her Birthday
« Last post by Andy Battaglia on March 23, 2023, 05:59:49 PM »
Happy Birthday to Lisa in Heaven.   

I became involved in your group 20 years ago to help out because your health was no longer good. I've tried hard to help people over these years, always in your memory.
It's been heartening to see so many other online efforts to help those with thal over the years, since you first founded your forum. I feel that we paved the way for these efforts by others and I know you would be pleased to see your thal friends find out that they are not alone in their daily struggles.

More than ever, I wish you were here to talk to. No matter how hard life got, you always found a way to offer friendship and hope. I miss you so much.
47
Thalassemia Major / Thalassemia Major & Abnormal Liver Function Test Readings...
« Last post by Sagar on March 20, 2023, 02:35:55 PM »
Hi Everyone,

Hopefully this post finds you all healthy. I am happy to be back after quite a while, writing this post on this incredible platform.

I am a 24-year-old thalassemia major patient from India weighing 65kgs, taking chelation therapy of desirox 2500mg per day every 2 consecutive days & kelfer 4000mg every 3rd day after 2 consecutive days of desirox. (Eg:- Mon&Tues – Desirox, Wed- Kelfer & so on). Please note that my liver has a severe iron overload, my pancreas has a moderate iron overload & no iron overload in heart.

My Recent Liver Function test (LFT) report showed bilirubin-total(B/T) of 5.0, bilirubin-indirect(B/ID) of 4.14 & bilirubin-direct(B/D) of 0.86 which is way much higher than the normal limits. I also noticed a steady rise in levels of B/T, B/ID and B/D compared to a year ago. Please note that my SGPT level is 42 and SGOT level is 45. Due to high B/T, I notice dark urine many times in a day and somewhat yellowish skin.

Is this increase in the above levels due to Desirox dosage? Can it be Gilbert Syndrome (which I haven’t tested yet)? Can it be controlled by any home remedies?  Is it harmful to the liver and body in the long run? One of my doctors said that increased B/T readings can lead to Jaundice more often!!

Request Andy for expert advice.

Report attached below.

Regards,
Sagar.
48
Diet, Nutrition and Supplements / Re: Wheatgrass Juice Dosage for 5 years old
« Last post by BobaFett on February 20, 2023, 08:36:20 PM »
Update:

Currently giving 2g of wheatgrass juice powder per day.
49
Thalassemia Minor / Re: Supplements for thal minor
« Last post by VB on February 06, 2023, 05:41:02 AM »
Hi Andy,

Thank you for your response. As per the CBC blood work, my 11 year old son's hemoglobin is as follows :

     Hemoglobin       10.8       (11.7-14.1).

Hemoglobin Electrophoresis shows "Consistent with Thal Minor".

Do you recommend any other testing ? We are hoping for him to grow more and gain some weight.

Thanks!



50
Diet, Nutrition and Supplements / Wheatgrass Juice Dosage for 5 years old
« Last post by BobaFett on January 30, 2023, 12:48:01 AM »
Hi all,

Need some advice on how much per day should I give my child wheatgrass juice powder?
1 serving is 3 grams (for adults). Take 1 to 2 servings per day.

Attached with photos of the product.

Thanks in advance.
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