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Author Topic: Nutritional Advice for Thal Minors  (Read 143841 times)
Andy Battaglia
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« on: April 27, 2013, 02:22:28 PM »

Let me start with some background about what can occur even in thal minor. Because some of the red blood cells that minors produce are small and irregularly shaped, there is a higher than normal turnover of RBCs. This is called hemolysis, and in turn this leads to an increase in spleen size, as the spleen breaks down the RBCs. This also leads to higher bilirubin levels and a build up of sludge in the gallbladder. Eventually, this can cause great pain and even pose a threat of rupture. Even if the gallbladder is removed, the hemolysis continues. The breakdown of RBCs causes much oxidative stress in the body, requiring antioxidants to counter the effects of oxidation. This process also depletes many nutrients in the body. Replacing the nutrients and concentrating on antioxidants, both in supplement and dietary forms is essential for good health.

My recommendations for thal minors follow.

Follow a nutritious diet that avoids foods with no nutritional value as much as possible. Think antioxidants when choosing foods. Fresh fruit, vegetables, nuts and beans are all good sources of antioxidants. Search online for "antioxidant foods" for more ideas. I cannot emphasize the importance of a high antioxidant diet enough. In all forms of thalassemia, oxidation is a real threat to health and this should always be kept in mind.

Exercise should be mild to moderate. This may mean something as simple as a short daily walk. the more you can exercise your legs, the healthier your heart will be and the less chance you will have of experiencing restless leg syndrome. A combination of improved diet and mild exercise should eventually lead to an ability to deal with a higher level of exercise.

Supplements:
Absolutely necessary are-
Folate 1-2 mg daily. Thal minor women trying to get pregnant or pregnant should be on doses of 2-5 mg daily. Folic acid is a basic building block of RBCs and it is essential in all forms of thal. The better form to use is l-methylfolate, as it is more bioavailable and many people cannot process folic acid properly. Studies have shown that women in general maintained higher Hb levels during pregnancy than those who used folic acid. http://www.ncbi.nlm.nih.gov/pubmed/21440300  
Quote
CONCLUSIONS:
In the present study, supplementation with a prenatal medical food containing L-methylfolate and high-dose vitamin B(12) may maintain hemoglobin levels and decrease rates of anemia in pregnancy more effectively than standard prenatal vitamins

Natural vitamin E complex. Use only natural d-tocopherol and mixed tocopherols. Do not use dl-tocopherol. It is synthetic and may actually be harmful in most doses. Take 400 IU natural E daily. This is one of the most important antioxidants you can take and it is good for the lungs and circulatory system. It also slows the aging process.

Vitamin C 500-1000 mg daily. (This dose should not be taken by thal majors). Vitamin C is also a powerful antioxidant, which also has the property of being able to reactivate vitamin E after E has already been used by the body as an antioxidant, making the E even more valuable. C is also essential for the circulatory system, as it is needed for the integrity of the walls of blood vessels. If you bruise easily, you are most likely deficient.

Magnesium 250-500 mg daily. In women, it is advised to take with calcium in a 2:1 ratio of Cal to Mag. Anyone experiencing heart palpitations should take cal/mag daily as these two minerals control the two sides of the heart beat. An imbalance or deficiency can lead to palps. Magnesium is also needed to build RBCs and deficiency is often a cause of restless leg syndrome.

B Complex (100 is recommended). Essential for building RBCs and maintaining energy levels. B vitamins are water soluble and need to be constantly replenished. The modern diet does not provide enough B vitamins.

Vitamin D levels should be checked in anyone experiencing tiredness or fatigue. D deficiency is the most common deficiency in today's world, with 1/2 to 2/3 of the world's population deficient. Get tested. If your level is not at least 35, correction is needed. Throw out any information about vitamin D that is more than 5 years old. It is now recognized that doses of at least 5000 IU daily are required daily to budge the level. Often, doses of 50,000-60,00 IU are prescribed weekly. Deficiency is behind a host of health issues, as D is essential for most minerals and many vitamins to be properly absorbed and used by the body. Taking minerals without taking D is almost useless. D deficiency is implicated in anything from a low immune system to depression. Get tested if you haven't already done so. No exceptions here, unless you get daily exposure to the sun year round (this mean short sleeves for over an hour a day).

Optional:
Trace minerals like selenium, zinc and copper should be considered, especially if the diet does not include a wide variety of nutritious foods.

CoQ10, glutathione,  Alpha Lipoic Acid and L-carnitine (or L-arginine or L-citrulline) can also be considered. Patients finding they get more tired as they age should definitely use L-carnitine.
« Last Edit: April 13, 2017, 06:03:49 PM by Andy » Logged

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zahra
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« Reply #1 on: April 30, 2013, 03:58:15 AM »

Thank you Andy.I always thought the palpitations were due to hypothyroidism. Now I wonder expecially because I also suffer from restless legs.
Zahra

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« Reply #2 on: May 09, 2013, 09:45:45 AM »

Hi Andy! Thank you for this thread

Your list was informative, but what kind of supplements should we take to have the highest absorption/effect, but are not overly expensive for all of us. You told to take Vitamin-E as d-tocopherol, but what about the rest?

This is something i already found out:

Vitamin-C
As studies show that L-ascorbic acid used in low-cost Vitamin-C supplements have only 20% absorption, natural supplements have higher absorption rate, but are usually expensive and Liposomal Encapsulated Vitamin C seems to have 80% absorption rate and you could make it yourself.

Vitamin-D
Should be eaten as d3, as d2 is 40% less effective..

Vitamin-E
"Because vitamin E is fat-soluble, it's best absorbed when taken with a meal containing some fat."


Is there any good multivitamin complex that has all what we could take, AOR Ortho-Core seems to be ok, but has alot of NAC (N-acetylcysteine) which is not recommended to use daily, but some studies show that you could use it daily..

Edit: found out rest of the threads about supplements, going to investigate them later on.

p.s we should have a sticky for supplement basics for thal minors, would be easier if they were all in one place instead in multiple threads over the years. If it's ok, i will try to add supplement facts to this post as i learn something new
« Last Edit: May 09, 2013, 11:08:35 AM by references » Logged

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Andy Battaglia
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« Reply #3 on: May 09, 2013, 06:01:17 PM »

Vitamin C is simply ascorbic acid. I see no difference in source. The natural sources usually have some traces of other vitamins, but I don't see it worth the added cost. I have also never observed any difference in effect in my own body. I use cheap vitamin C daily.
Yes, it should be D3, and this is what is found in most supplements. I use a liquid form made by Now.
Vitamin E should only be taken as a natural form, d-alpha tocopherol or mixed tocopherols (mixed is preferred). Avoid synthetic dl-alpha.
I take all vitamins after a meal, as it is much easier on the digestion. The advice I have seen for E only says take it with a meal and nothing specific about fats. I don't know why that would be true, as it is in oil already.
The multi you asked about has dl-alpha tocopherol in the other ingredients. An example of a good quality multi without iron can be seen at http://www.allstarhealth.com/f/natures_way-alive_multivitamin_no_iron_added.htm

This new thread is stickied. I do not have the time it would take to gather relevant posts and merge them into this thread, and am not sure the thread would be as easy to use if I did that. I think we will go from here because this is the most up to date.


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Matthew
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« Reply #4 on: October 03, 2013, 05:33:47 PM »

Since I read this a month ago, I've been taking these supplements, and following these guidelines. I am definitely noticing an improvement in my energy levels and how well I'm sleeping. I stay alert at work and I feel like my over all productivity in life is increasing. Thank you for these guidelines, as I believe they are helping me entirely.
--Matthew
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« Reply #5 on: November 13, 2013, 10:05:41 AM »

Hi,  can I eat goji berries with being thal?  Your response is urgently needed.   Thanks
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« Reply #6 on: January 06, 2014, 03:50:26 AM »

Confused over folic acid / b complex. Folic acid is a b vit included in complex. Should I take both?
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Andy Battaglia
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« Reply #7 on: January 06, 2014, 09:51:07 AM »

How much folic acid is in the complex? It's usually nowhere enough.
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« Reply #8 on: March 18, 2014, 07:59:53 AM »

Hi there Andy, i am 30 years old and  i would be thankful if you read my values, i am thal minor, i have been taking multi vitamin like centrum for adults http://www.centrum.com/whats-inside/ingredients but i just noticed it has iron and some other vitamin/minerals as well but i would need your advice on which supplements to take and in what quantity.
Since you mention to take 250 mg of magnesium although my levels are normal, do i have to take them? So i would appreciate if you can advice me what to take in what quantity.
Thanks

Following are my recent results which were done 3 days ago

1. Magnesium  2.3 mg/dl    (normal 1.6-2.6)
2. 25 hydroxy vitamin D 23.3 ng/ml
3. Serum calcium 10.5 mg/dl
4. S.phosphorous 4.2 mg/dl
5. Serum B12     301 pg/ml
6. Hemoglobin   13.7 gm/dl
7. HB Electrophoresis
             Haemoglobin A   95.5%
             Haemoglobin A2  4.1%   
             High A2 consistent with thal minor.

Waiting for your advice Andy

Regards

John
« Last Edit: March 18, 2014, 08:22:59 AM by greenhorn » Logged
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« Reply #9 on: March 18, 2014, 03:15:07 PM »

anyone pls
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Andy Battaglia
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« Reply #10 on: March 18, 2014, 05:28:30 PM »

John, I replied to your other post at http://www.thalassemiapatientsandfriends.com/index.php/topic,5168.msg48756.html#msg48756
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sofear
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« Reply #11 on: April 23, 2014, 09:41:31 AM »

B Complex (100 is recommended). Essential for building RBCs and maintaining energy levels. B vitamins are water soluble and need to be constantly replenished. The modern diet does not provide enough B vitamins.

What does this mean? Im a bit confused.  Huh?

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Andy Battaglia
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« Reply #12 on: April 23, 2014, 09:51:30 AM »

Check any vitamin company online. Just search for B Complex. It's a supplement with a wide range of B vitamins included in doses sufficient to be useful.
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« Reply #13 on: April 23, 2014, 11:06:11 AM »

Thank you, Andy!

I'm not sure why some measurements are in "IU" and others are in "mg". Is it correct that 400 IU of Vitamin E would be 268mg?
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Andy Battaglia
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« Reply #14 on: April 23, 2014, 06:21:28 PM »

Make sure it isn't synthetic E. 1 mg of alpha-tocopherol is equivalent to 1.49 IU of the natural form, so yes it would be 268 mg.
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