Thalassemia Patients and Friends

Discussion Forums => Diet, Nutrition and Supplements => Topic started by: Andy Battaglia on April 27, 2013, 02:22:28 PM



Title: Nutritional Advice for Thal Minors
Post by: Andy Battaglia 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.


Title: Re: Nutritional Advice for Thal Minors
Post by: zahra 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



Title: Re: Nutritional Advice for Thal Minors
Post by: references on May 09, 2013, 09:45:45 AM
Hi Andy! Thank you for this thread :biggrin

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." (http://"http://www.drweil.com/drw/u/ART02813/facts-about-vitamin-e")


Is there any good multivitamin complex that has all what we could take, AOR Ortho-Core (http://"http://www.aor.ca/products-page/5-methyltetrahydrofolate-5-mthf/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.. :huh

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 :)


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia 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.




Title: Re: Nutritional Advice for Thal Minors
Post by: Matthew 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


Title: Re: Nutritional Advice for Thal Minors
Post by: olla on November 13, 2013, 10:05:41 AM
Hi,  can I eat goji berries with being thal?  Your response is urgently needed.   Thanks


Title: Re: Nutritional Advice for Thal Minors
Post by: Caroline01 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?


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on January 06, 2014, 09:51:07 AM
How much folic acid is in the complex? It's usually nowhere enough.


Title: Re: Nutritional Advice for Thal Minors
Post by: greenhorn 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


Title: Re: Nutritional Advice for Thal Minors
Post by: greenhorn on March 18, 2014, 03:15:07 PM
anyone pls


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia 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


Title: Re: Nutritional Advice for Thal Minors
Post by: sofear 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.  ???



Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia 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.


Title: Re: Nutritional Advice for Thal Minors
Post by: sofear 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?


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia 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.


Title: Re: Nutritional Advice for Thal Minors
Post by: sofear on April 24, 2014, 12:42:44 PM
Thanks!

A few more questions:

1.) Can I simply take the mentioned dosages via supplements as "in addition" to my regular food? I'm used to a strict diet, but the micronutrients in food seem to vary, depending on quality, preparation, etc.
2.) I found a B complex where one pill also has 600 mcg of folic acid. Should I try to fill the rest via regular food or buy a separate package of pills with folic acid?
3.) Andy, you once told us that you take most of your supplements directly after a meal. Does this mean I can take "everything" at once or should I take supplements on multiple occasions during the day?


Title: Re: Nutritional Advice for Thal Minors
Post by: sofear on April 28, 2014, 06:30:02 AM
4.) Does one take L-arginine, L-carnitine or L-citrulline or all of them?


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on April 28, 2014, 09:48:20 AM
You just need one. Some patients may have trouble with one form, so all 3 are listed.


Title: Re: Nutritional Advice for Thal Minors
Post by: Happypobon on June 19, 2014, 05:13:10 PM
Vitamin C is absorved iron. I am confudsed we should take it or not.
Mr Andy,
Can you tell us details with medicine name which medicine, how many we should have taken?


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on June 20, 2014, 07:03:53 PM
Thal minors do not iron load unless their Hb is extremely low for a minor, so there is no prohibition on taking vitamin C.


Title: Re: Nutritional Advice for Thal Minors
Post by: sofear on July 14, 2014, 06:20:42 PM
I got everything on the list together, but it seems the B complex, especially B-100 ones cost a lot here in Germany or European online shops. Is it correct that a B-100 complex has 100mg of each contained B vitamin? I looked at it and in one tablet there were ingredients at around 8000% RDA.

The most time I only find products like this:

Niacin 48 mg
Pantothenic Acid 18 mg
Vitamin B6 4,2 mg
Vitamin B2 4,2 mg
Vitamin B1 3,3 mg
Folic acid 600 µg
Vitamin B12 7,5 µg

I can't find something like this: http://www.puritan.com/b-complex-vitamins-021/vitamin-b-100-complex-010282

And if I find some B-100, it's not even a "real" B-100 and some of the B vitamins are at 25mg or 50mg and 90-100 tablets cost around 30€. (40$)

Is Puritan a good brand? I'm thinking about buying it from there, even with the shipping costs, because the difference in price is huge - in all supplements.


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on July 16, 2014, 06:50:46 PM
I actually use that same B complex. It's very popular in my family. I've used it for years and see the difference if I don't take it. I've ordered from Puritan for decades.


Title: Re: Nutritional Advice for Thal Minors
Post by: LauraAsh3 on July 30, 2014, 01:07:49 PM
I've started taking the Folic Acid, B complex, Vitamins C, E, and D this week. I haven't yet gotten the magnesium and calcium yet. Thanks Andy for this!


Title: Re: Nutritional Advice for Thal Minors
Post by: Danny.H on August 22, 2014, 04:59:01 PM
Thanks for such informative topic.
I have started the supplements since I believe June/ July ,and it has improved a lot my condition .
I still dealing with some aches here and there but I need to get back exercising out of my current job also .
I also will need to get the calcium.
Danny


Title: Re: Nutritional Advice for Thal Minors
Post by: Hana on September 12, 2014, 06:55:35 AM
Hi! Andy
i want to ask about vitamin B100 , i want to buy the same product that u always use , i live in cambodia where it is very hard to find and buy vitamin B100, it costs very expensive about 55$ for 100 tablets of b100 . Now i want to try order online and this is my first time.
i want to make sure that is these the Vitamin B100 and website that u order to use :
http://www.puritan.com/b-complex-vitamins-021/vitamin-b-100-complex-timed-release-002812

thank you .


Title: Re: Nutritional Advice for Thal Minors
Post by: Nomad on September 12, 2014, 07:26:38 AM
Hi everyone ,
I was lately Reading about a study with N-acetylcystein in mices and it shows that it protects the Liver from Free Iron! Ok a Human is Not a Rat but I do know that they give it also to some onkology patients.
By the Way, Does someone using Gamma-Aminobutyric Acid (GABA)?
Or know somthing about it? Andy?


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on September 12, 2014, 09:15:44 AM
Hana, that is the same tab I take daily. Good product.


Nomad, N-Acetyl Cysteine is an excellent antioxidant. In general, antioxidants protect the body from the damage iron causes.

As far as GABA, http://www.ncbi.nlm.nih.gov/pubmed/16971751
Quote
Biofactors. 2006;26(3):201-8.
Relaxation and immunity enhancement effects of gamma-aminobutyric acid (GABA) administration in humans.
Abdou AM1, Higashiguchi S, Horie K, Kim M, Hatta H, Yokogoshi H.
Author information
Abstract
The effect of orally administrated gamma-aminobutyric acid (GABA) on relaxation and immunity during stress has been investigated in humans. Two studies were conducted. The first evaluated the effect of GABA intake by 13 subjects on their brain waves. Electroencephalograms (EEG) were obtained after 3 tests on each volunteer as follows: intake only water, GABA, or L-theanine. After 60 minutes of administration, GABA significantly increases alpha waves and decreases beta waves compared to water or L-theanine. These findings denote that GABA not only induces relaxation but also reduces anxiety. The second study was conducted to see the role of relaxant and anxiolytic effects of GABA intake on immunity in stressed volunteers. Eight acrophobic subjects were divided into 2 groups (placebo and GABA). All subjects were crossing a suspended bridge as a stressful stimulus. Immunoglobulin A (IgA) levels in their saliva were monitored during bridge crossing. Placebo group showed marked decrease of their IgA levels, while GABA group showed significantly higher levels. In conclusion, GABA could work effectively as a natural relaxant and its effects could be seen within 1 hour of its administration to induce relaxation and diminish anxiety. Moreover, GABA administration could enhance immunity under stress conditions.
PMID: 16971751 [PubMed - indexed for MEDLINE]


Title: Re: Nutritional Advice for Thal Minors
Post by: Nomad on September 12, 2014, 09:56:41 AM
Thanks Andy 4 the very quick answer. I might give it a try.
Do you have any Suggestion about how much ACC  someone should Take Daily?
I got me a Package of 100gr pure ACC for 17€ and take about 250mg every Day. In your opinion, is it less Or to much? Oh by the Way, cashews seem to have a similar effect like GABA.  :wink


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on September 13, 2014, 01:19:34 PM
Nomad,

Most of the NAC caps have 600-1000 mg. You might be able to bump the dose up.

I believe cashews stimulate production of GABA.


Title: Re: Nutritional Advice for Thal Minors
Post by: Nomad on September 13, 2014, 08:14:23 PM
I will. I m also trying to find some IP6 here in Germany but all i Gounod was inositol-hexaniancinate. Also called Flush-free vit B3. Its not the same is it?
Ps: a handfull nuts, ( cashews macadamia almonds walnuts) is a musst! For many reasons...


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on September 15, 2014, 09:57:04 AM
Nomad, that's a form of Niacin, vitamin B3. While it does have value, it is not the chelator.


Title: Re: Nutritional Advice for Thal Minors
Post by: HusbandOfThalBetaMinor on September 24, 2014, 03:09:04 AM
Thanks for the helpful thread. We take B12 and recently Vit.D3. Will include the others for my wife.


Title: Re: Nutritional Advice for Thal Minors
Post by: TonyF on September 28, 2014, 08:08:08 AM

I see folks seem to still be taking folic acid supplements or B vitamins with folic acid in them..this is 2014 no?!!
 
Folic Acid is cheap(thats why many manufacturers use it, probably unhealthy and there are better alternatives, especially for folks with MTHR genes and probably for Thals like me.

http://chriskresser.com/folate-vs-folic-acid
Quote:
You can supplement with folate if your dietary intake is inadequate. Look for products that contain the Metfolin brand, or list “5-methyltetrahydrofolate” or “5-MTHF” on the label. Avoid products that say “folic acid” on the label. Make sure to check your multivitamin, because most multis contain folic acid and not folate.

I take around 1200mcg of calcium folinate [folinic acid] a day, the 5-MTHF is also good or eat lots of greens, eggs and liver, but just avoid all FOLIC ACID supplements or foods containing it.

Must be 100's of docs/nutrition gurus advising against folic acid if you do a search.




Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on September 29, 2014, 09:47:35 PM
TonyF,

Thank you for bringing up a valid point about folic acid. I have revised the original recommendations to reflect this.


Title: Re: Nutritional Advice for Thal Minors
Post by: Nomad on September 30, 2014, 03:14:39 AM
Yeah That is True ! I can recomend a Good Brand : Pure Encapsulations B-Complex plus and it contains
L-Methylfolate or Metafolin*.
Take care. K.


Title: Re: Nutritional Advice for Thal Minors
Post by: sofear on November 28, 2014, 07:56:47 AM
Nomad, your product contains 400 mcg of folic acid. How would you get a product with around 1-2 mg of folic acid or more as l-methylfolate? I haven't found anything close to that and I bet it would be extremely expensive.


Title: Re: Nutritional Advice for Thal Minors
Post by: Nomad on December 01, 2014, 02:29:27 PM
The product I do use costs ca 50€ and contains 120 capsules so it lasts almost 4 months.
The 400mcg are 200% of the RDA and very good absorbable so there is no need for a higher dose...
Save your money.  :wink


Title: Re: Nutritional Advice for Thal Minors
Post by: catchR on July 22, 2015, 04:52:14 AM
Hi Andy,

Typically, all Thal Minor have a haemoglobin on slightly lower side and doctors immediately prescribe a iron supplementation. I am not sure if this is correct way to deal with lower hb.

Can you please recommend the tests that can establish iron deficiency in thal minor and what are the ways to improve Hb if the cause isn't iron levels?

thanks!


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on July 23, 2015, 05:42:31 PM
A full iron panel should be done. This includes serum ferritin, serum iron and TIBC or TSAT%. By looking at the results of these tests and also the results of a complete blood count (CBC), especially the RBC, which will be low if iron deficiency is present, but normally is a bit high for thal minors, you can get a pretty good idea of whether or not a thal minor has iron deficiency, as well. In my experience looking at blood reports of thal minors, ferritin is often low in minors and they do not have iron deficiency. I would say no minor should ever be prescribed iron based on a serum ferritin test, alone.


Title: Re: Nutritional Advice for Thal Minors
Post by: Danny.H on August 02, 2015, 01:24:40 AM
I want to share this link here also
http://informahealthcare.com/doi/abs/10.3109/08880018.2013.771388
I also want to share my experience with supplements.
I started to take lot of supplements since I read this post however my body's chemistry was all alterated  at that point . So everything that I took actually didn't helped me it was in September last year after going through surgery for gallbladder removal (it was no longer functional full of calculus ) that t I started my journey with my naturopathic doctor that actually directed me in a better  protocol with suplemmets. At this point I went back two times to talk about my symptoms and read my blood exams to actually target the problem and solve it. That has been helped me .just take supplements from the nature isle is not a good way to start it can be harmful for some of us. It was for me . But knowing what we really need is the better wag to do it . I'm aware that not all doctors are able or willing to read chemistry on our blood exams but once we find this awesome doctors is a good idea to share here with the community.


Title: Re: Nutritional Advice for Thal Minors
Post by: Danny.H on August 02, 2015, 01:38:02 AM
The link above us just the abstract but if you put the name of the study on a search engine will give you the option for the PDF format with all pages .


Title: Re: Nutritional Advice for Thal Minors
Post by: Himanshu Kumar on December 12, 2015, 03:14:29 AM
Should thal minors take Vitamin B,C,E and D without consulting a doctor. What are the prescribed dosages for each of these vitamins.


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on December 13, 2015, 02:19:32 PM
Himanshu,

Yes, majors can take all those vitamins.
B is a group of vitamins, so a B complex is best
C can be taken, but no more than 250 mg daily for an adult major. Don't take at the same time as iron containing foods.
D is needed by most people. If you don't get much sunshine, you should take a D supplement. For reference, I take at least 5000 IU daily.
E should only be taken as natural vitamin E (d-alpha tocopherols, not dl). I suggest 400-800- IU daily for majors. I have taken E daily for 40 years.


Title: Re: Nutritional Advice for Thal Minors
Post by: Lokkhi maa on December 13, 2015, 08:46:44 PM

Hello Andy,

I am thal minor.Always feel pain in every joint of body.All day legs are cramp painfully and feel tired to do anything.When I walk my legs are felling no sense.Is all problems for thal minor?Last night my babies doctor also examine me and I really wonder with the doctor to see that my eyes are almost white.He said how are you surviving?You have no blood !! Take iron tablet..But not advised anything.

Please advise..


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on December 14, 2015, 10:19:36 PM
Try taking magnesium before you sleep at night. It can help with tired legs and leg cramps. Make sure you also stay well hydrated, so drink plenty of water.


Title: Re: Nutritional Advice for Thal Minors
Post by: Lokkhi maa on December 15, 2015, 12:41:30 AM


What to take for increase HB level.When I was pregnant then doctor advise for increase Hb level as tablet JPERON.But when found I am thal minor then the prescribed doctor changed the medicine and advise only for taking Folic acid.He said other elements of JPERON will be harmful for me.

May I take regular folic acid?Will it be helpful for increase HB?


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on December 15, 2015, 06:28:10 PM
Yes, folic acid must be taken when pregnant or when trying to get pregnant. It prevents birth defects and should be taken by all women who could have children. All thals can also benefit from folate because it helps to buiild red blood cells and platelets. The best form is L-methylfolate.
Some women do also need iron while pregnant, but if a good balanced diet is eaten, that includes iron rich foods, supplements for iron shouldn't be needed.


Title: Re: Nutritional Advice for Thal Minors
Post by: Lokkhi maa on December 16, 2015, 09:19:05 PM

Thanks Andy..


Title: Re: Nutritional Advice for Thal Minors
Post by: htuongvy on December 19, 2015, 12:09:28 AM
Dear Andy,
I really want to say thank you so much for your useful information.
I have a kid 7yrs old. Daily, he only takes acid folic, vit e ( 400 iu ). Sometimes, he takes Kindervital as your advice. In this post, you mention B complex. But there are many kinds, i don't know what kind is suitable for him, liquid or tablet. Pls kindly help me.
http://www.amazon.com/Puritans-Pride-Vitamin-Complex-Tablets/dp/B004KBLUWW
http://www.amazon.com/Puritans-Pride-Vitamin-B-Complex-Sublingual/dp/B004R693JM
Thank you so much.


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on December 20, 2015, 08:54:07 PM
htuongvy,

The second one would be better for a child. It's sublingual, which means the child should swish the liquid around under the tongue for a minute before swallowing it.
http://www.amazon.com/Puritans-Pride-Vitamin-B-Complex-Sublingual/dp/B004R693JM


Title: Re: Nutritional Advice for Thal Minors
Post by: htuongvy on December 23, 2015, 02:18:07 AM
Hi Andy,
Tks so much. If my son takes both Kindervital and B complex daily, is that ok?


Title: Re: Nutritional Advice for Thal Minors
Post by: htuongvy on December 23, 2015, 02:35:18 AM
Andy,
You mention B 100 complex, but that only have B12, so according to you what kind is the best for him? I need your help to order all medecines because in Vietnam, we don't have them.
Thank you.


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on December 24, 2015, 08:47:48 AM
The second one you listed is a B complex with added B-12.
He can take both.


Title: Re: Nutritional Advice for Thal Minors
Post by: htuongvy on December 28, 2015, 02:44:30 AM
Thanks Andy.


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on January 11, 2016, 04:44:20 PM
Thanks for the feedback on carnitine. I am a big believer in its necessity for thals, especially as they grow older.


Title: Re: Nutritional Advice for Thal Minors
Post by: Sharmin on February 01, 2016, 10:40:54 AM
Thank you for sharing mgk.  My son was on L-carnitine for many years.  He's an athlete so I think it helped him in many ways.  He hasn't taken it for the last few years - his life has gotten busier, but I will get him back on it. 



Title: Re: Nutritional Advice for Thal Minors
Post by: sofear on February 02, 2016, 09:05:11 AM
I read that there are also studies that indicate that Carnitine in large doses could be bad for one's health. I'm always skeptical towards certain supplements that also play a big role in the fitness industry. There is often just too much "New Wonder Supplement Found!" in all those studies.


Title: Re: Nutritional Advice for Thal Minors
Post by: Sharmin on February 02, 2016, 11:54:45 AM
sofear,

I understand your concerns. 

My son was prescribed a dose from the doctors at the Oakland comprehensive centre where they have studied it very closely in thals.  I think that this may benefit others as well.

The needs of thals are very different from the general population. 


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on February 02, 2016, 04:34:17 PM
sofear,

What is meant by large doses of carnitine are the ridiculous size doses used by body builders. These doses are as high as 30 grams daily. This became such a problem that L-carnitine is only available by prescription is some countries.
1000-2000 mg daily is a safe dose.


Title: Re: Nutritional Advice for Thal Minors
Post by: references on September 26, 2016, 01:55:10 PM
Hey Andy!

I have eaten vitamin supplements now for years, changed my eating habits to a high-nutrient density diet and have increased cardio exercise with cycling and swimming, lost -15kg and i feel more energized than ever! Big thanks to you and this community for giving me the first step to change my lifestyle to a healthier one!!  :ty


I'm going to a lab to check my levels of cholesterol, omegas, insuline, ferritin, vitamins (b9, b12, c, e) and minerals (calcium, potassium, magnesium, zinc).

This lab offers huge list of things to test for a fair price, is there anything else important i should also test?


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on October 01, 2016, 12:21:14 PM
Testing vitamin D should be included.

Now, you may be told levels are within range, but if B-12 or D are on the low end of normal, it's not good enough. Thals do much better when B-12 is near the high end of normal and with D levels above 40.


Title: Re: Nutritional Advice for Thal Minors
Post by: urja on February 14, 2017, 01:30:39 AM
 Hi Andy & thal friends,

I am a 53 yr old  Thal B minor diagnosed at the age of 23 yrs

My questions today are

1)  Beetroot is better raw or cooked ?
2) What should be the dose of Wheat grass powder ?
3) What should be the dose of Wheat grass tablets ?

Thanks so much for this forum

Good health to all
Urja


Title: Re: Nutritional Advice for Thal Minors
Post by: harris on February 15, 2017, 02:38:49 AM
Hi Andy, I recently joined this group and thanks for you initiative.

Me (M38) and my son (M 11) both are Thal Minor,  I have few questions, I request your highlights.

While reading your post, i come to know that supplements are compulsory for Thal Minor, i would like to know before starting supplements/ medicine, should we go for blood test, if yes what are the test, secondly is there any specialist doctors who can deal better to thal patient.

I look forward for your advice please.

Regards -Harish Bhatt


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on February 17, 2017, 10:46:07 AM
No blood tests are needed, other than possibly getting the vitamin D levels checked. Testing for nutrients only shows the level in the blood. It does nothing to tell you what your body's actual needs are. The processes at work in thalassemia deplete nutrients. Replacing them is one fo the few things a thal minor can do to achieve better health.


Title: Re: Nutritional Advice for Thal Minors
Post by: urja on March 03, 2017, 05:29:49 AM
Hi Andy,
Im confused about ...

1)  Beetroot is better raw or cooked ?
2) What should be the dose of Wheat grass powder ?
3) What should be the dose of Wheat grass tablets ?

Thanks so much for this forum

Good health to all
Urja


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on March 05, 2017, 05:41:15 PM
Raw beets have more vitamins that cooked. If they are cooked, it is best to steam for no longer than 15 minutes, as the longer beets cook, the more nutrients are lost.

Follow the instructions on the wheatgrass product you use. It can vary greatly from brand to brand. Powder or tablets made from the juice require a smaller dose than wheatgrass that is made from the grass itself.


Title: Re: Nutritional Advice for Thal Minors
Post by: jsbhavsar on May 10, 2017, 07:47:54 AM
Nomad, that's a form of Niacin, vitamin B3. While it does have value, it is not the chelator.

In Feb-2017 I hd uric acid of 6.8. However, I started B12 shots that comprised cynacobalamin 500mcg, folic acid 1.5mg and nicotinamide 100mg. Alternate day one 2ml shot.

After taking 4 shots, I had discomfort on kidneys.
After taking 5 shots, kidney pain continued and uric acid had shot to 9.

What I suspect, the nicotinamid in the B12 shot may have shot the uric acid to 9 in 12 days time.

http://www.livestrong.com/article/474323-can-niacin-cause-gout/

Seeing a high uric acid of 9, doctor prescribed Febuxostat 40mg tablet to me and the game changed completely.
Febuxostat was replaced with Allapurinol drug and that did not help me either.
Uric acid stands 10.0 today.

Doctor is insisting that some drug (Febuxostat or Allapurinol) to control uric acid maybe required 1 tablet once a day or 1 tablet alternate day.


Title: Re: Nutritional Advice for Thal Minors
Post by: Saeed Ahmed on May 25, 2017, 12:05:56 AM
Dear Andy,

For my 5 Yr old son with Thal B Trait  as my Hematologist did not prescribed any supplements or iron i am giving him papaya, mango, dates, orange, apple and spanich as they are consist of Vitamin A,C,E, floic aicd and iron apart from others.
He hates beet root  :rolleyes
Thank You.



Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on May 26, 2017, 03:35:04 PM
Papaya is very good for the spleen. I mentioned in another post that muskmelon juice is also supposed to help shrink the spleen size. The foods you are giving are all very nutritious. This is how the entire diet should be, only nutritious foods.


Title: Re: Nutritional Advice for Thal Minors
Post by: CA on November 17, 2017, 04:36:44 AM
Hi Andy,

Is this nutritional advice for both alpha and beta Thal Minors? Is there any special thing I have to know regarding alpha minors?

Cheers,
Cris


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on November 23, 2017, 02:54:08 PM
In general, the nutritional advice applies to both alpha and beta thal. The main difference is that attempts to raise fetal hemoglobin in alpha thal will not work, as there is a deficiency of alpha globin to combine with gamma globin to make HbF. Anything that is needed to build and maintain RBC's can help, especially folate, B12 and magnesium.


Title: Re: Nutritional Advice for Thal Minors
Post by: anaisaoco on March 06, 2018, 06:00:19 PM
Hi Andy

I tried purchasing the multi vitamin you recommended in this post, but it has been discontinued.
https://www.allstarhealth.com/f/natures_way-alive_multivitamin_no_iron_added.htm

When trying to find an alternative, I ended up buying the version with added iron. :-\
https://www.amazon.co.uk/gp/product/B0009F3RO2/ref=od_aui_detailpages00?ie=UTF8&psc=1

A serving contains 18mg of Iron (as ferrous bisglycinate chelate). I attach the full nutritional information table.

Is this too much iron for me to take?

I am actually a beta thal intermedia, my hemoglobin is currently at 8.1, which is up from 6.5 a month ago when I miscarried. My ferritin is 437 ng/mL, iron serum 132 µg/dL and transferrin at 157 mg/dl with a saturation index of 60%.

I am currently taking 10mg daily of folic acid (perscribed by the doctor), a teaspoon of spirulina powder, B complex (100) and Maximised L-Glutathione 250mg from reading this forum and recollection of what I used to take as a teenager, but I was really hoping I could take a multi vitamin as well.

Thanks so much


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on March 15, 2018, 06:04:05 PM
This one looks very much the same, but with no added iron. https://www.amazon.co.uk/Natures-Way-Premium-Formula-Multi-Vitamin/dp/B0009F3ROC/ref=sr_1_1_s_it?s=drugstore&ie=UTF8&qid=1521154781&sr=1-1&keywords=nature%27s+way+multivitamin+no+iron


Title: Re: Nutritional Advice for Thal Minors
Post by: giggles on March 17, 2018, 12:24:24 AM
Hi Andy

im so pleased to have found this wesbite dedicated to helping people with the thalassemia genetic disease.

A little about myself and my past, my name is jeff and i am 21 year old male living in Australia, a few years ago i had a general blood test that included a full blood examination, and the results suggested i had thalassemia traits, the doctor and i discussed about it and he said not to worry about it too much, he stated that it wont effect me, but he did say if he could a problem if i wanted to make a offspring, i would have to check if my partner was also a carrier of thalassemia, and i noted it and that was that.

So for as long as i remember ive always been feeling unenergetic, everytime i wake up i dont feel refreshed at all, i cant remember the last time i had good sleep. i dont have the motivation to achieve any goals or ambition, let alone if i have any at all.

I went back to the gp and dicussed about the lack of energy levels and restless sleeps, and ultimately we ended up talking about sleep apnea, and from there i went to go get a sleep study test done. Long story short, the test showed that i didnt sleep very well, and i stop breathing a few times during my sleep cycle, and from there i talked to the ENT specialist about it, and he examined me and suggested we remove my tonsils, uvulva, fix my deviated nose septum and make my tongue smaller. Well i was put on a waiting list and after a year, the surgery happened and i had the procedures done. Well honestly i feel the exact same way i did before the surgery, still feeling unenergetic and feeling shit after waking up from sleep. There were follow ups after the procedure like seeing how the recovey was going and doing another sleep study test. Ultimately the sleep study test was a fail, because i couldnt even get to sleep with all the machines equipped to myself and i only managed to sleep for 1 hour before the test was done. And that was that, i called them and told them i didnt want any more follow ups.

So recently the thought had came to mind about thalassemia, i didnt think much of it before until now, i started to do some research on the topic and hence i came across this website and now were here.
I dont know what type of thalasssemia i have, but i will post these results that are from 2016, and i have another blood test results coming in a fews days but i dont think that will change in my full blood examination

This test was done by dorevitch pathology

Full blood examination                 (references)

HB: 131 g/L                              (130-180)
PCV: 0.47 L/L                           (0.40-0.54)                          
RCC: 6.98 X1012/L                    (4.50-6.50)
MCV: 67 FL                               (80-96)
MCH: 19 PG                              (27-32)
MCHC: 279 g/L                          (320-360)
RDW: 21.7%                             (11.0-16.0)

b12, folate

serum folate : 28.4 nmol/L           (> 9.0)

vitamin b12                            (150-700)
 
iron studies:

ferritin: 247 u/L                     (20-300)

iron:  19 umol/L                     (10-30)

transferrin: 3.0 g/L                (2.2-3.7)

transferrin sat: 25%               (13-47)

Im going to buy the suggested vitamins and supplements you wrote in your post unless you say otherwise

folate 1-2mg daily (l-methlfolate as an alternative)
b complex 100
magnesium 250-500mg daily
vitamin c 500-1000mg daily
natural vitamin e d-tocopheral 400 iu daily, dont use dl-tocopheral

AVOID IRON

some people posted this on reddit
1g daily l carnitine taurine
creatine monohydrate
ashwaghada (ksm 66 extract)







Title: Re: Nutritional Advice for Thal Minors
Post by: anaisaoco on March 17, 2018, 08:46:20 AM
Thanks Andy, that's the one I wanted to have ordered but I clearly did something wrong. In Portugal it's very hard to find multivitamin supplements with no added iron, so I resorted to ordering online.


Title: Re: Nutritional Advice for Thal Minors
Post by: BitterBlood79 on March 17, 2018, 01:08:05 PM
Hi Andy

im so pleased to have found this wesbite dedicated to helping people with the thalassemia genetic disease.

A little about myself and my past, my name is jeff and i am 21 year old male living in Australia, a few years ago i had a general blood test that included a full blood examination, and the results suggested i had thalassemia traits, the doctor and i discussed about it and he said not to worry about it too much, he stated that it wont effect me, but he did say if he could a problem if i wanted to make a offspring, i would have to check if my partner was also a carrier of thalassemia, and i noted it and that was that.

So for as long as i remember ive always been feeling unenergetic, everytime i wake up i dont feel refreshed at all, i cant remember the last time i had good sleep. i dont have the motivation to achieve any goals or ambition, let alone if i have any at all.

I went back to the gp and dicussed about the lack of energy levels and restless sleeps, and ultimately we ended up talking about sleep apnea, and from there i went to go get a sleep study test done. Long story short, the test showed that i didnt sleep very well, and i stop breathing a few times during my sleep cycle, and from there i talked to the ENT specialist about it, and he examined me and suggested we remove my tonsils, uvulva, fix my deviated nose septum and make my tongue smaller. Well i was put on a waiting list and after a year, the surgery happened and i had the procedures done. Well honestly i feel the exact same way i did before the surgery, still feeling unenergetic and feeling shit after waking up from sleep. There were follow ups after the procedure like seeing how the recovey was going and doing another sleep study test. Ultimately the sleep study test was a fail, because i couldnt even get to sleep with all the machines equipped to myself and i only managed to sleep for 1 hour before the test was done. And that was that, i called them and told them i didnt want any more follow ups.

So recently the thought had came to mind about thalassemia, i didnt think much of it before until now, i started to do some research on the topic and hence i came across this website and now were here.
I dont know what type of thalasssemia i have, but i will post these results that are from 2016, and i have another blood test results coming in a fews days but i dont think that will change in my full blood examination

This test was done by dorevitch pathology

Full blood examination                 (references)

HB: 131 g/L                              (130-180)
PCV: 0.47 L/L                           (0.40-0.54)                           
RCC: 6.98 X1012/L                    (4.50-6.50)
MCV: 67 FL                               (80-96)
MCH: 19 PG                              (27-32)
MCHC: 279 g/L                          (320-360)
RDW: 21.7%                             (11.0-16.0)

b12, folate

serum folate : 28.4 nmol/L           (> 9.0)

vitamin b12                            (150-700)
 
iron studies:

ferritin: 247 u/L                     (20-300)

iron:  19 umol/L                     (10-30)

transferrin: 3.0 g/L                (2.2-3.7)

transferrin sat: 25%               (13-47)

Im going to buy the suggested vitamins and supplements you wrote in your post unless you say otherwise

folate 1-2mg daily (l-methlfolate as an alternative)
b complex 100
magnesium 250-500mg daily
vitamin c 500-1000mg daily
natural vitamin e d-tocopheral 400 iu daily, dont use dl-tocopheral

AVOID IRON

some people posted this on reddit
1g daily l carnitine taurine
creatine monohydrate
ashwaghada (ksm 66 extract)






Hi
I actually added Asghwagandha in my routine. two caps of 500 daily (10 mg of extract)

I'm taking also

folate 1 mg
Vit e natural + mixed toco
- NO B complex neither b12
Vitamin c 250 twice a day
Vitamin D 5000 daily
sometimes Magnesium citrate

I don't know but Who told you to use it probably was right. Since I'm taking It I feel better.
I feel less fatigue, more energy, and I exercise again almost every day. But in my body there is a little side effect, and there is a paradox: I've insomnia (too much dose?).
I added also more protein in my diet (2gr x kg of bodyweight).
My theory is that I was in a low T3 and low cortisol state for poor calories intake and too much exercise.


Title: Re: Nutritional Advice for Thal Minors
Post by: giggles on March 17, 2018, 11:07:23 PM
Hi
I actually added Asghwagandha in my routine. two caps of 500 daily (10 mg of extract)

I'm taking also

folate 1 mg
Vit e natural + mixed toco
- NO B complex neither b12
Vitamin c 250 twice a day
Vitamin D 5000 daily
sometimes Magnesium citrate

I don't know but Who told you to use it probably was right. Since I'm taking It I feel better.
I feel less fatigue, more energy, and I exercise again almost every day. But in my body there is a little side effect, and there is a paradox: I've insomnia (too much dose?).
I added also more protein in my diet (2gr x kg of bodyweight).
My theory is that I was in a low T3 and low cortisol state for poor calories intake and too much exercise.

hay mate, thanks for replying, i found people stated that they used Asghwagandha on reddit, they say it makes them sleep better as well. I heard melatonin and zma helps with sleeping, but im not sure if i want to add that to the list of spplements im going to buy and consume, theres too many supplements that i have listed, learning about vitamins and suplements is like opening up a can of worms, theres too much to learn, theres debates about most supplements if they're really effective or not. I dont really know what to buy.


Title: Re: Nutritional Advice for Thal Minors
Post by: giggles on March 21, 2018, 08:07:14 AM

Hi Andy

im so pleased to have found this wesbite dedicated to helping people with the thalassemia genetic disease.

A little about myself and my past, my name is jeff and i am 21 year old male living in Australia, a few years ago i had a general blood test that included a full blood examination, and the results suggested i had thalassemia traits, the doctor and i discussed about it and he said not to worry about it too much, he stated that it wont effect me, but he did say if he could a problem if i wanted to make a offspring, i would have to check if my partner was also a carrier of thalassemia, and i noted it and that was that.

So for as long as i remember ive always been feeling unenergetic, everytime i wake up i dont feel refreshed at all, i cant remember the last time i had good sleep. i dont have the motivation to achieve any goals or ambition, let alone if i have any at all.

I went back to the gp and dicussed about the lack of energy levels and restless sleeps, and ultimately we ended up talking about sleep apnea, and from there i went to go get a sleep study test done. Long story short, the test showed that i didnt sleep very well, and i stop breathing a few times during my sleep cycle, and from there i talked to the ENT specialist about it, and he examined me and suggested we remove my tonsils, uvulva, fix my deviated nose septum and make my tongue smaller. Well i was put on a waiting list and after a year, the surgery happened and i had the procedures done. Well honestly i feel the exact same way i did before the surgery, still feeling unenergetic and feeling shit after waking up from sleep. There were follow ups after the procedure like seeing how the recovey was going and doing another sleep study test. Ultimately the sleep study test was a fail, because i couldnt even get to sleep with all the machines equipped to myself and i only managed to sleep for 1 hour before the test was done. And that was that, i called them and told them i didnt want any more follow ups.

So recently the thought had came to mind about thalassemia, i didnt think much of it before until now, i started to do some research on the topic and hence i came across this website and now were here.
I dont know what type of thalasssemia i have, but i will post these results that are from 2016, and i have another blood test results coming in a fews days but i dont think that will change in my full blood examination

This test was done by dorevitch pathology on 15/11/2016

Full blood examination                   (Reference range)

HB: 131 g/L                              (130-180)
PCV: 0.47 L/L                           (0.40-0.54)                           
RCC: 6.98 X1012/L                    (4.50-6.50)
MCV: 67 FL                               (80-96)
MCH: 19 PG                              (27-32)
MCHC: 279 g/L                          (320-360)
RDW: 21.7%                             (11.0-16.0)

b12, folate

serum folate : 28.4 nmol/L           (> 9.0)

vitamin b12                            (150-700)
 
iron studies:

ferritin: 247 u/L                     (20-300)

iron:  19 umol/L                     (10-30)

transferrin: 3.0 g/L                (2.2-3.7)

transferrin sat: 25%               (13-47)

Im going to buy the suggested vitamins and supplements you wrote in your post unless you say otherwise

folate 1-2mg daily (l-methlfolate as an alternative)
b complex 100
magnesium 250-500mg daily
vitamin c 500-1000mg daily
natural vitamin e d-tocopheral 400 iu daily, dont use dl-tocopheral

AVOID IRON

some people posted this on reddit
1g daily l carnitine taurine
creatine monohydrate
ashwaghada (ksm 66 extract)


UPDATE!!!

i just got my new results

15/3/2018

full blood examination

Haemoglobin: 125 g/L                     (130-180)
PCV: 0.42 L/L                           (0.40-0.54)                           
RCC: 6.58 X1012/L                    (4.50-6.50)
MCV: 63 FL                               (80-96)
MCH: 19 PG                              (27-32)
MCHC: 301 g/L                          (320-360)
RDW: 19.3%                             (11.0-16.0)



b12, folate

serum folate: 44.8 nmol/L           (> 9.0)

vitamin b12: 385                    (150-700)
 
iron studies

ferritin: 396 u/L                     (20-300)

iron: 19 umol/L                     (10-30)

transferrin: 2.9 g/L                (2.2-3.7)

transferrin sat: 26%               (13-47)


analysing the blood test, not much has changed except the haemoglbin levels, its dropped a bit and looking at my 2016 haemoglbin levels it was barely making it on the reference range, now its not even within the reference range.
Iron studies shows that my iron levels are still the same, however ferrin has gotten worse, its not within the ref chart now, its gone above. Serum folate has increased, i think thats a good thing, vitamin b12 has increased a tiny bit


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on March 22, 2018, 06:19:04 PM
Hi Jeff,
 I have messaged in reply to the same questions that are here. I won't say much about a diagnosis of sleep apnea, other than it is a huge money making industry and I am quite skeptical about the value of surgery or CPAP machines for many people.

Have you had your vitamin D level checked? It's important to get it much higher than the low end of normal, which is 30. You want it in the 50-80 range. I am currently taking a once a week dose of 50,000 IU and after years of low doses, I finally feel like it is in the right range.
Your B-12 is okay, but thal minors do better when their level is near the high end. Sublingual B-12 works well. I would suggest 1000-2000 mg Acetyl L-carnitine daily. This has benefits in terms of red blood cell development and lifespan, and is extremely important for fixing nitric oxide in the body, which helps to maintain the flexibility of blood vessels and thus, the circulation, while taking strain off the heart. This problem is often overlooked, even in thal major, and it becomes worse with age, if precautions like L-carnitine and natural vitamin E are not used. Depletion of NO is a great contributor to lack of energy and fatigue as thals age. It is a cumulative problem that has actually been going on since birth, as the antioxidant forces at work in all types of thalassemia constantly deplete NO levels. Search online for foods rich on nitric oxide to make sure you are good getting dietary amounts, but take a supplement of L-carnitine of L-arginine daily.
With your sleep trouble, take 500 mg magnesium right before going to bed at night, or earlier if you get restless legs before bed. Epsom salt baths at night can also help, as you will absorb magnesium through your skin in the bath. Taking a magnesium complex before bed has greatly improved my sleep, which has been bad my entire life. I also take a zinc and copper tablet at the same time. Since I've taken a high dose of vitamin D and added zinc, my immune system has been great. If you take zinc, take it with copper, as taking one, can cause an imbalance with the other.

Get whatever exercise you can do. Even stretching and light walking will help. Gotta keep the circulation going. Vitamin C and E will also help your circulation.


Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on March 22, 2018, 06:21:48 PM
anaisaoco  , If you can, email the seller and ask them if they do carry the formula with no added iron.


Title: Re: Nutritional Advice for Thal Minors
Post by: giggles on April 06, 2018, 07:10:36 AM
yo andy, i finally ordered all the vitamins and supplements i needed, ill post it up

i made sure to check the ingredients before buying, as i know some alternatives are better than others


Title: Re: Nutritional Advice for Thal Minors
Post by: Tinkerbellissima on June 03, 2018, 03:49:17 PM
Hi Andy, Thank you for adding me. I am in awe that you have dedicated so much of your time to the Thalassemic community even though you are not a suffer yourself. My son is 20yrs old and has Thal Beta, he has been kind of okay most of his life. (Somethings are starting to make sense now) in recent months his energy levels have really dropped. His recent blood test came back that he was anemic, but not low in iron. Vit D levels have dropped from 90 last year to 60 this year. I have been reading a lot about the supplements you recommended and I wondered if you had come across Savestrols? They are essentially antioxidants in a high quantity derived from citrus extracts, blueberries, grape seed and blackberry powders. I wondered what your opinion on them was. Any advice for the chronic fatigue is welcome as we are new to this whole thing. Do Vitamin B12 injections work?
I have just started  giving him the following;
Coq10 100mg twice daily
Vitamin E 400iu x1 daily
Selenium 200ug x1 daily
Salvestrol shield x1 daily
Vitamin D3 1000iu x1 daily (should I increase this to raise levels back to 90?)
Vitamin C 600mg and Zinc 14mg lozenge x1 daily
Transdermal magnesium baths
How is this?
I appreciate any advice you can give. He has only just started on these supplements so not sure if they will make any difference yet to his fatigue and foggyness.

Hi Andy, Thank you for adding me. I am in awe that you have dedicated so much of your time to the Thalassemic community even though you are not a suffer yourself. My son is 20yrs old and has Thal Beta, he has been kind of okay most of his life. (Somethings are starting to make sense now) in recent months his energy levels have really dropped. His recent blood test came back that he was anemic, but not low in iron. Vit D levels have dropped from 90 last year to 60 this year. I have been reading a lot about the supplements you recommended and I wondered if you had come across Savestrols? They are essentially antioxidants in a high quantity derived from citrus extracts, blueberries, grape seed and blackberry powders. I wondered what your opinion on them was. Any advice for the chronic fatigue is welcome as we are new to this whole thing. Do Vitamin B12 injections work?
I have just started  giving him the following;
Coq10 100mg twice daily
Vitamin E 400iu x1 daily
Selenium 200ug x1 daily
Salvestrol shield x1 daily
Vitamin D3 1000iu x1 daily (should I increase this to raise levels back to 90?)
Vitamin C 600mg and Zinc 14mg lozenge x1 daily
Transdermal magnesium baths
How is this?
I appreciate any advice you can give. He has only just started on these supplements so not sure if they will make any difference yet to his fatigue and foggyness.

Thanks in advance



Title: Re: Nutritional Advice for Thal Minors
Post by: Andy Battaglia on June 03, 2018, 06:15:52 PM
Hi Tinkerbellissima,

I don't know a lot about salvestrols, but they are related to resveratrol, which is known to help raise the hemoglobin level and reduce the amount of ineffective erythropoiesis (red blood cells that don't reach maturity) in the bone marrow, and that addresses the main two problems in thalassemia, so it is likely that salvestrols have some use in thals.
B-12 injections do work, but should be reserved for those who show no improvement from sublingual supplements. I know a thal minor who only feels okay when she has a B-12 injection.
If he felt better with higher D, he should try to get back up to that level.
The program looks good, but I would suggest getting a zinc supplement that also contains copper. They should be used together to prevent depletion of the one not taken. L-methylfolate may also be of use in building red blood cells.