Vitamin and Mineral Supplementation in Thalassemia

Hi,

I am often asked what supplements should patients be taking. I would like to remind everyone that I am not a professional, but that over the past thirty years I have done much research into health and nutrition on my own and in recent years have and continue to research specifically what is recommended for thals.
 
These are basic recommendations for adults. Keep in mind that lower doses are most often recommended for children.
 
I have included links to some of our previous discussions about supplements.
 
Vitamin E  400 iu.  Natural source preferred. d-alpha tocopherol (not dl-alpha). If possible, use mixed tocopherols. (Vitamin E is a blood thinner, which is a good thing for most people. However, if you are taking a blood thinner such as warfarin or coumadin, tell your doctor you are taking vitamin E as your dosage of the blood thinning drug may need to be adjusted downward).
 
Folic Acid 1000-10,000 mcg (micrograms). 1000 = 1 mg This is recommended for all thal patients.
 
B-Complex. The B vitamins help protect the body against stress and are important for many basic functions. B vitamins are water soluble and do not last long in the body. It is important to replace them on a regular (daily) basis. Adequate amounts of vitamin B-12 are essential. B-12, as all B vitamins is water soluble and amounts ranging from 100-1500 mcg daily are advised.
 
Calcium  1000-1500 mg plus 500-1000 mg magnesium plus Vitamin D 1000-5000 iu ( all work together to maintain bone growth and heart function). Calcium taken alone is inadequate and can also lead to problems affecting the heart. It must be balanced with magnesium, as they work together in the heart beat, and an imbalance can lead to heart palpitations. Vitamin D is necessary for the absorption of calcium.

See   http://groups.msn.com/ThalassemiaPatientsandFriends/general.msnw?action=get_message&mview=1&ID_Message=967
 
http://groups.msn.com/ThalassemiaPatientsandFriends/locatethalcare.msnw?action=get_message&mview=0&ID_Message=1127&LastModified=4675469592205296093&all_topics=1
 
Zinc 15-50 mg
 
Vitamin C 100-250 mg taken with desferal (helps more iron to be excreted). Do NOT take more than 250 mg daily if thal. Too much iron can be freed into the bloodstream where it can cause clumping in the heart, causing lowered heart function. Vitamin C has not been studied with other chelators so it's combination effect is not known. Do we have any members on kelfer or ferriprox who can tell us their own experience using Vitamin C?

IP6 (phytic acid) is a natural iron chelator and a member of the B family. IP6 is a powerful antioxidant, and patients using it have showed both some reduction in ferritin levels and also improvements in general health.
 
Iron should not be used by thallasemics as it can lead to iron overload.
 
A previous discussion of what group members use is at
http://groups.msn.com/ThalassemiaPatientsandFriends/locatethalcare.msnwaction=get_message&mview=0&ID_Message=872&LastModified=4675459014025746004&all_topics=1
 
Please feel free to share what supplements you are taking. There may be other things that you find essential.
In addition to basic supplements, many members are also using wheatgrass in juice, pill or extract form and some are also using other nutritional supplements that do seem to give them more energy. I would like to encourage all members to share their experiences and tell us what has worked for them. This is so important. People need to know what they can do to better the quality of their lives.

Can someone explain why Vitamin E is important for a thal Intermedia?

Vitamin E is one of the most important nutrients that need to be supplemented in thalassemia. The iron overload that exists in major and intermedia causes tremendous oxidative stress to the cells and anti-oxidants can prevent oxidative stress from occurring. 

From http://www.cooleysanemia.org/sections.php?sec=188&node=188

Paradoxically, oxygen is essential for life but is also lethal! This is because normal oxygen molecules can convert into different chemical forms known as “free radicals.” When the activity of free radicals is harnessed and controlled, they have important uses in the body. Uncontrolled free radicals, however, can do great damage and lead to disease.

Antioxidants are important in any diet, because as their name suggests, they prevent oxidative damage in the body. In doing so, they play an important role in the prevention of diseases such as coronary heart disease and cancer.

In thalassemia, because of the excess iron in the body, there is a higher risk of oxidative damage...Vitamin E is the most important dietary antioxidant. Several studies have found that many thalassemics have lower levels of vitamin E in their blood compared to non-thalassemics. This could be either because thalassemics do not take as much vitamin E in their diet or because their needs are higher. In many studies, when vitamin E was given as a supplement, vitamin E levels in the blood improved.

And specifically about intermedia, from http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11378535&dopt=Abstract

Fifteen beta-thalassemia intermedia patients, not requiring chronic transfusional therapy, were monitored in order to check their antioxidant status, and the lipid oxidation products in plasma, LDL, and erythrocytes before and during a 9-month oral treatment with 600 mg/day vitamin E. The low level of vitamin E, and high level of malondialdehyde in plasma clearly tended to normalize after three months (P < .001), and were quite similar to control after six months. The abnormally low level of vitamin E in LDL and the four times higher than control basal level of conjugated dienes (LDL-CD), were not modified after three months of treatment. Significant changes of LDL-VE (P < .05) and of the basal LDL-CD (P < .001) were evident after six months. LDL-VE was within the normal range after nine months, whereas LDL-CD still appeared twice as higher than control. Plasma vitamin A, ascorbate, beta-carotene, and lycopene increased markedly at the end of the trial (P < .005). The level of vitamin E in red blood cells was normalized after six months of supplementation. A decrease of the baseline value of conjugated dienes was observed after nine months, although it remained 1.4-fold higher than control. The RBC count and hematocrit appeared higher at the end of the trial (P < .05 and P < .001, respectively). The hemoglobin value did not show variations. A shift to normal of the resistance of erythrocytes to osmotic lysis was observed. Our findings provide evidence that an oral treatment with vitamin E improves the antioxidant/oxidant balance in plasma, LDL particles, and red blood cells, and counteracts lipid peroxidation processes in beta-thalassemia intermedia patients.

Osteoporosis is a serious problem in thalassemia that is becoming even more prevalent as the thal population ages. Since osteo is also a major problem in the non-thal population, there are many studies done on prevention and reversal of bone loss. Several studies were summarized by Jean Carper in her column in the USA Weekend magazine,April 2, 2006. 

WHAT TO EAT FOR STRONG BONES

Bones weaken and fractures soar with age. Today, about 10 million Americans have osteoporosis (brittle bones), and another 34 million have osteopenia (low bone mass).
Potassium-packed fruit can help bones

Here's the latest research on how to keep bones strong:

Don't count on calcium alone. New research finds vitamin D as important. In fact, a daily 700 IU to 800 IU of D cuts hip fracture risk 26%, say Harvard investigators. Most women should take 500mg to 800mg calcium and 600 IU vitamin D each day.

Beware animal fat. Eating high amounts of saturated fat in meat and dairy can weaken bones, finds a new Penn State study. In men under age 50, those who ate the most saturated fat had 4% less bone mineral density than men who ate the least.

Eat fruits, vegetables. One reason: They're packed with potassium, which slows excretion of calcium. In animals, dried plums (prunes) even reversed bone loss.

Cut salt. In women with a typical American diet, cutting back to 2,000mg sodium a day reduced their calcium and bone loss, says a University of Tennessee study.

Get B vitamins. Low B12 levels in the blood signal lower bone mineral density in men's hips and women's spines, says recent Tufts University research. In Japanese research, high daily doses of B12 (1,500mcg) and folic acid (5mg) cut hip fractures 80% in stroke patients.

Limit colas and candy. Higher consumption of these is linked to greater bone loss.

Sources for this article

Vitamin D and bones Steingrimsdottir L, JAMA. 2005 294:2336-41.
Bischoff-Ferrari HA, JAMA. 2005 May 11;293(18):2257-64.
Saturated fat and bones
Corwin RL, J Nutr. 2006 Jan;136(1):159-65.
Fruits and vegetables and bones
Macdonald HM, Am J Clin Nutr. 2005 Apr;81(4):923-33.
Deyhim F, Menopause. 2005 Nov-Dec; 12(6): 755-62.
Salt and bones
Carbone LD, J Bone Miner Metab. 2005;23(6):506-13.
B vitamins and bones
Tucker KL, J Bone Miner Res. 2005 Jan;20(1):152-8.
Sato Y, JAMA. 2005 Mar 2;293(9):1082-8.
Colas, candy and bones
Tucker, KL. Curr Pharm Des. 2003;9(32):2687-704.

Jean Carper's Stop Aging Now! Copyright 2001-2006. All rights reserved.

Andy,

Great article and I am sure it is very helpful for those looking for keeping their health in a better shape.

Could you be specific and tell what is recommended for Thal(Minor)'s?

-Narendra

 Narendra.... I think Folic acid would be great.... and ofcourse calcium supplements...

shikha Mitra

Hi

I have been recommended squalene (shark liver oil?) as an anti-oxidant.  I was told that it would assist Thal patients as we were prone to cancers. 

Anyone knows about this?

More about Vitamin D.

From Jean Carper's column,  http://www.jeancarper.com/eatsmart/1724

Don't be vitamin D-ficient

A new Harvard study finds that men who had the highest blood levels of vitamin D were 29% less apt to die from any cancer than those who had the least blood D.

The vitamin appeared to be particularly effective in preventing deaths from colon, pancreatic, esophageal and stomach cancers. According to one measure, an extra 1,500 IU of a vitamin D supplement may cut such cancer deaths by 45%.

New German research suggests that vitamin D may be a new anti-inflammatory agent for treating congestive heart failure. A daily dose of 2,000 IU vitamin D strongly reduced signs of inflammation, which is involved in heart failure.

Such high doses of D generally aren't recommended but are safe, researchers say. High-vitamin D foods include canned pink salmon (3 ounces have 530 IU).

Scientific sources
Vitamin D vs. cancer
Giovannucci E. J Natl Cancer Inst. 2006 Apr 5;98(7): 451-9
Vitamin D vs. heart failure
Schleithoff, Stefanie. Am J Clin Nutr. 2006 Apr; 83(4):754-9

Calcium is a common supplement for thals and should be taken along with magnesium and Vitamin D. Vitamin D is required for proper absorption of calcium and magnesium along with calcium help regulate the heart beat. Calcium without magnesium can lead to heart palpitations. This new study shows that Vitamin D may also aid in treating congestive heart failure. One more reason to make sure you are getting your D.

If you are looking for nutritional content of different foods there is an excellent resource provided by the US Department of Agriculture at

http://www.nal.usda.gov/fnic/foodcomp/search/

You can find information on vitamin and mineral content of foods prepared in a variety of ways. It is a very useful resource.

Another note I want to make is that there is a difference between the absorption rates of heme and non heme iron. This should be considered when making calculations about how much iron is in your diet. Vegetable source iron is less well absorbed in the gut and absorption can also be somewhat prevented by using certain foods, such as tea, with meals.

If you are looking for nutritional content of different foods there is an excellent resource provided by the US Department of Agriculture at

http://www.nal.usda.gov/fnic/foodcomp/search/

This is IT!

I've been looking for such database but always found very limited ones.

Thanks Andy!

Hi,

Is it an established fact that thal is linked to cancer propensity? Now this is really scary!!! God, as if our glasses are not yet full! Please someone tell me more about this. I am really scared 

Scared,
Namitha

What?!?!?

Thal. - A cancer!!!

I don't think so because the definition of Cancer is : "malignant growth or tumor caused by abnormal and uncontrolled cell division; it may spread to other parts of the body through the lymphatic system or the blood stream"

O.K the last two words can cause confusion, but I think that we don't have such cells that are so poisonous that they are lethal. Transfusions suppresses the manufacture of the faulty cells of our Bone marrow and everything is set as long as we provide alternate "Working ones".

Take care, Peace!

Hi,

Is it an established fact that thal is linked to cancer propensity? Now this is really scary!!! God, as if our glasses are not yet full! Please someone tell me more about this. I am really scared 

Scared,
Namitha

Hmm... not sure if this is true but this is my take on this claim.

Being a thal means there's lots of free iron (non transferrin bound iron which is unstable) in the body (its a whole long technical explanation on this). This iron goes through a process which produces free radicals. Free radicals harms the body and are cancer causing. Therefore, Vitamin A, C and E which are anti oxidants are important for the body for any other person, what more for thals.

This is also the reason why chelation is so important. It removes the excess iron and the free radicals.

The importance of magnesium supplementation in thalassemia should not be overlooked. Many thals take large doses of calcium but don't give a thought to magnesium, which the body needs along with calcium for many reasons, including controlling the heartbeat. It has also been found that cellular dehydration that takes place in thalassemics, can be countered by a high magnesium diet and that magnesium has a positive effect on anemia.

http://bloodjournal.hematologylibrary.org/cgi/content/full/90/3/1283

...beta thal mice that were fed the low-Mg diet became more anemic, had reduced serum and erythrocyte Mg, and had decreased erythrocyte K. Their K-Cl cotransport increased, followed by commensurate cell dehydration...high-Mg group showed a significant improvement of the anemia, increased serum and erythrocyte Mg, increased erythrocyte Mg, increased erythrocyte K, reduced K-Cl cotransport, and diminished cell dehydration...These results indicate that dietary Mg supplementation corrects hypomagnesemia and improves anemia in murine beta  thal and should be assessed in human beta -thalassemia.

The ratio of calcium to magnesium and why it is important is discussed at

http://www.enerex.ca/articles/calcium_to_magnesium_ratio.htm

Lisa's doctor put her on a combination of calcium and magnesium because she was having heart palpitations. These two minerals control and regulate the heart beat.

REGULATION OF HEART BEAT

The heart is a muscle and its primary function is to pump blood throughout the body.   The heart is composed of billions of cells, each of which works as an electrochemical generator, and contains both calcium and magnesium.  On the outer surface of the heart cells, thin fibers made of a substance called "actin", continually expand and contract in unison with the heartbeat.  The actin fibers are stimulated by calcium, and then relaxed by magnesium.  An electrical charge produced by magnesium then pushes the calcium to the opposite side of the cell.  Thus, calcium helps to produce the heartbeat, and magnesium regulates it.

The suggested ratio of calcium to magnesium has been put at 2:1 but this article suggests that since magnesium is not efficiently absorbed, that a higher ratio of magnesium may be necessary.

The recommended dietary allowance (RDA) for calcium is 800 mg/day, whereas for magnesium it is 400 to 450 mg/day.  Only about one-third of magnesium is absorbed from dietary sources.  Therefore, a daily magnesium intake of 1200 mg/day has been recommended by some researchers (22).  The traditional ratio of approximately 2 parts calcium to 1 part magnesium needs to be upgraded to increase magnesium intake in view of the overwhelming beneficial role of magnesium.  The ideal ratio for most people's needs is an equal ratio of calcium and magnesium.

The absorption and metabolism of calcium and magnesium is one of mutual dependence, and therefore, the balance between these two minerals is especially important.  If calcium consumption is high, magnesium intake needs to be high also.

Andy,

I want to talk about zainab's supplementation in a bit detail,currently i am giving her ABOCAL half tablet daily, by "ABBOT LABORATORIES" .A full tablet contains calcium carbonate 670 mg,equivalent to 268 mg of elemental calcium, Vitamin D 400 I.U, Vitamin C 500 mg, Vitamin B6 10 mg . I am giving her half tablet daily (prescribed by her hemo),so all values would be divided in half.And she is taking another multi vitamin called VIDAYLIN ,again by ABBOT LABORATORIES, It says that each 5 ml teaspoonful contains Vitamin A U.S.P 0.9 mg (3000 units) ,Vitamin D U.S.P 10 mcg (400 units), Vitamin B1 U.S.P 1.5 mg, Vitamin B2 U.S.P 1.2 mg, Vitamin B6 U.S.P 1.0 mg, Vitamin B12 U.S.P 3.0 mcg, Vitamin C U.S.P 50 mg, Nicotinamide U.S.P 10 mg. 

I know it's a lot of details and i am sorry to bother you with this, but doctors don't want to go in that much details,and i don't want any point to be left,and also that i am worried about her magnesium and zinc supplementation,there is another version of VIDAYLIN called VIDAYLIN-M which contains all the minerals like magnesium and zinc but it also contains iron,so obviously it's not suitable for her,when i asked my physician to name me any supplement with magnesium and zinc but not iron, she asked me to force zainab to eat green vegetables,but zainab really doesn't like vege,what should i do? and though she is taking calcium but since she started IP6 she is complaining of pain in heels (below ankles) on daily basis, is this due to the calcium chelated by IP6? or anything else?

She went for transfusion today and her pre-transfusion hb was 9.8 after four weeks of last transfusion,and the thing that's bothering me is that her S.F increased,in july it was 1327,and in sept it's 1750, she is taking ferriprox and IP6,though last month we had to cut desferal due to unavailability.

Waitning for your reply.

ZAINI.