Multivitamins for thal major children

Thank you Andy,

For a few years I avoid vit c, but i did take it between meals.

I think I do understand the article...

Andy, so i can understand that my son can drink juice (with added vitamin C) as well as citrus fruits right after the meal, as this fact was proven by the study. But what about the other fact that is Vitamin C helps in iron absorption?? In which form does this absorbed iron become

I don't get it because these two fact are contradicting!!!!

manal

Manal,

This study does contradict previous thinking about citrus and iron absorption. This study found no connection between citrus intake and serum ferritin levels. What is noteworthy is

Although a model has been proposed in which greater fruit intake is associated with increased iron uptake and higher body iron stores,13,14,16 other large studies have provided little support for this

If the thinking that iron intake is increased by vitamin C intake is based on a model and not the result of studies, one may conclude that the model is wrong,

It should also be noted that red meat and alcohol both DO cause increases in serum ferritin levels.

Also,

The protective effect of fruit is therefore potentially relevant to other important iron-overload conditions that do not involve HFE mutations, including thalassemia and sickle cell anemia. Approximately half of β-thalassemia major patients die before age 35 years, predominantly from iron-induced heart failure.27 Dietary modification might assist in optimizing dose regimens for new iron chelators now coming on the market to allow safer, more effective management of iron load.

This is very interesting that they feel that dietary considerations can have a significant impact on ferritin levels.

Thanks Andy, the picture is more clear now

manal

Hi Andy ,
Sorry , but ii m a little confused again , i want to ask abt the Vit-C and Ferriprox  ,
as everybuddy know that Ferriprox chelate's stored iron from heart , it will b good to take Vit-C with Ferriprox ?? as vit-C used to mobilize iron ( release iron in blood ) . in this ccase , is Vit-C will effect to efficiancy of Ferriprox ??.... in this case Ferriprox will have less iron in heart to chelate .. please correct me if i m wrong .. i will b real thanlful of you . and sorry again for asking again & again abt Vit-C  ..

Best Regards
Take Care
Umair

Umair,

I have posed this question to Apo Pharma, makers of Ferriprox, and was told they don't know if it's been tested. Cipla also hasn't tested C with L1. It may seem in theory that C would help add more iron to be chelated but without trials, it is only speculation, so we can't make any statement to that effect.

I think many people are missing the point. Vitamin C is not just something that is to be taken with desferal to remove more iron. Vitamin C is an essential nutrient and most thals are deficient. Thals should not take high doses of C but they should get what is safe. This has nothing to do with chelation. It is all about maintaining optimal health.

Thanks Andy,

In recent months I finally began understanding and appreciating the importance for thals of taking supplements to support the cardiopulmonary system.  A major problem in thals is hypertension and heart failure - this results from iron overload as well as issues with the arteries - so we need to prevent both!   Vitamin C plays a very important role in protecting the blood vessels, and keeping them flexible that is why vitamin C deficiency in thals can cause trouble.  Thals, despite having low hg can have high blood volume, so the blood vessels need to be able to compensate for the changes in blood volume in thals.  Vitamin C, L-carnitine, L-argenine, watermelon - can all help keep your blood vessels healthy.  Vitamin C also plays an important role in immunity, bone health and many other functions. 

The role that vitamin C can play in chelation is a seperate matter.  With desferal this is a little more clear - as vitamin C causes organs to release iron into the plasma - desferal mops up this iron from the plasma and excretes it.  This mechanism helps desferal chelation because desferal itself is not able to enter cells and tissue to remove iron - so when vitamin C expels the iron desferal has more iron to remove. 

With L1 and exjade - we know that these chelators are good at removing iron from tissue - so the need for vitamin C for this particular purpose MAY NOT be the same.  The other thing is that we don't know if L1 and exjade are as efficient at removing iron from plasma - therefore, in theory if you take a large dose of vitamin C with L1 or exjade - it may not be mopped up quickly as it would be by the desferal. 

Regardless, we need to find a way for thals to get the vitamin C that they desperately need - I am wondering whether it is better to take it in small doses between meals throughout the day for patients who do not use desferal - and 250mg 1/2 after chelation for those who do use desferal.   I will try to get more information during our next visit to Oakland, as little A's desferal may be decreased to 2 or 3 days a week - and I want to ensure that he gets enough vitamin C even when he is using only exjade. 

Andy, am I understanding this correctly? 

Sharmin

Vitamin C is best taken multiple times each day because it washes through the body so quickly. Small doses at least twice daily would be best and until we can learn more about what this study showed, I think it is prudent to continue to take vitamin C and citrus fruits between meals. I think that even small doses can do a lot for the health of thals, so it is important to think of C as necessary and not just for those taking desferal.

If the thinking that iron intake is increased by vitamin C intake is based on a model and not the result of studies, one may conclude that the model is wrong,

Andy, what do you mean by a model and how it differs from a study??

manal

Manal,

A model is basically a given set of conditions and the results that would be expected from that set of conditions. A study as cited here, involves studying actual human subjects and observing what is happening in the real world. In this case, what was seen was NOT what was expected and in fact resulted in the suggestion that eating non-citrus fruits may actually cause a reduction in serum ferritin levels. I would guess that the beneficial value of eating fruits is a factor here and is having some positive effect on serum ferritin. This may tun out to be a no-brainer and the obvious is the answer. People who eat a lot of fruit generally have a better diet and would most likely be in better health than those whose diets are not healthy. Being thalassemic doesn't change these facts, and thals can expect to benefit from a good diet just like anyone else.

Thanks Andy, i am really happy that you found this important study, its a break through

manal

Hi,
My son is 14 months now
He uses about 700ml of formular milk per day and cereal, meat, fruit, do they supply enough vitamins? does he need to be applied more Vitamins? and what kind of them?
Aryaka

Aryaka,

Multivitamins are good for all children, but for thalassemia children they are essential in order to maintain good health.  The type and dosage of vitamins that are recommended depends on your son's diagnosis.  Is he thal minor? intermedia or major?  We can guide you accordingly. 

Take good care,

Sharmin

Sharmin,
As my son electromemphis Hemoglobin's test, my doctor just said he is in Intermediate to Major beta Thal, watch him carefully, do blood test every 6 month...and do not give any prescription.
I did post his test result on this site and Andy said he is in Minor Thal...I'm wondering which kind of situation of my son...
This is our test result, could you give me more guide...
Our son:
Hematologie:
WBC: 8.31 G/l {5.0-13.0}
RBC: 5.65 T/l {4.0 - 5.5}
Hbb: 12.8 g/dL {11.5-14.5}
HCT: 38.4% {37-45}
MCV: 68 fL {78-92}
MCHC: 33.3 g/dL {30.0-36.0}
MCH: 22.7 pg {28-32}
Protein C-reactive: 1.7 mg/l
Ferritine: 72.4 ng/ml {7.0-282.0}
Hb electrophoresis:
HbH: 0
Hb Bart: 0
HbA: 77.0%
HbF: 18.8%
HbE: 0
HbA2: 4.2%
HbS: 0
HbD:0
My husband's result:
Ferritine: 443 ng/mL {30-400}
Hgb: 14.3
MCV: 72.7
MCH: 25.7
Hb electrophoresis:
HbF: 6.1%
HbA2: 5.2%
HbA: 88.7%
My result:
Hgb: 12.1
MCV: 75.2
MCH: 25.5
Ferritine: 20
HbF: 0.4
HbA2: 2.8
HbA: 96.8
Thanks so much

Aryaka,

The child is not thal major. A major would be transfusing by now. It takes one thalassemia gene from each parent for a child to have beta thalassemia. In a previous post, you stated that your test shows no beta minor for yourself and minor for your husband. The HbA level is far too high for major or intermedia and the HbA2 is consistent with thal minor. The HbF is high for a minor but high HbF can also be related to other conditions like carrier for hereditary persistence of fetal hemoglobin, but it would be much higher in major.

Is your son growing normally? Is he healthy? Is there anything that would suggest that he isn't  developing normally? I am wondering why the doctor would make a diagnosis of major or intermedia when the child's hemoglobin level is normal and the test results only indicate thal minor.