Thalassemia Patients and Friends
Discussion Forums => Diet, Nutrition and Supplements => Topic started by: Sharmin on December 05, 2008, 04:10:41 AM
-
Andy,
I am giving progressive multiple mineral and vitamin formula to both of my children (thal major child and nonthal child).
Is this a good multivitamin for my thal son?
http://www.progressivenutritional.com/multikids/research.htm (Please click on ingredients to view)
I am also giving him the seperate doses of vitamin e, vitamin c (250mg), cal/mag/vitamin D/zinc (Osteocare), carao, wheat grass (Just restarted), and omega 3-6-9
Thanks,
Sharmin
-
Hi Sharmin. That is a really good multivitamin and it has no artificial additives. My only suggestion is to adjust the supplemental vitamin C so little A doesn't take more than 250 mg daily. As a note, black pepper extract aids in absorption of the other ingredients.
-
Thanks Andy :hugfriend
I will adjust his vitamin C :)
That is interesting to know, about the black pepper abstract. My grandparents often told us to take fresh ground black pepper when we were not feeling well.
Sharmin
-
Hi Andy ,
please correct me , My only suggestion is to adjust the supplemental vitamin C so little A doesn't take more than 250 mg daily
Patients with iron over load usualy become Vit-C deffifient , probably because of iron oxidises th vitamin. [bgcolor=#ffff00]As aa adjuvant to chelation therapy, vitamin-c in doses upto 200mg daily may be given in divided [/bgcolor] doses, starting after an intial month of regular treatment with desferal ( see special warning and precautions for use ). Vitamin-c increases the availbility of iron for chelation. [bgcolor=#ffff00]In general 50mg suffices for children under 10 years of age and 100mg for older children.Larger doses of vitamin-c fail to produce any additional increase in excretion of the iron complex [/bgcolor] .
Please Shed some light on it .... i quoted this piece of information to that Desferal's Leaflet that is issued by the compay ( Novartis ) for the product Desferal ..
International Package Leaflet
Information issued: September 2005
® = Registered Trademark
Novartis Pharma AG, Basel, Switzerland
-
Umair,
You should highlight the first part of that quote for your answer.
Patients with iron over load usually become Vit-C deficient , probably because of iron oxidizes the vitamin.
Thals need vitamin C because they are seriously deficient. 250 mg is considered a safe dose, so this is recommended. As a bonus, C aids in freeing iron for chelation, but it is not the only reason to take vitamin C, which is the single most important vitamin in my opinion.
-
Thanx Andy ,
i was confused abt the dosage and administration of vit-c , but its clear now that if i have started chelation regularly then its safe to take 250mg of vit-c ... after its a long time to when i started chelation with pum today i gave my tummy a littlee rest and i m having desferal IV , soo i took 250mg of vit-c after 1 hour to starting time of chelation.... thanx buddy. ..
Take Care
Umair
-
Ehhhhh ??? Oh help! I thought we weren't allowed to take vitc. I thought that for 2 years, untill i came here. But deficient in vit. C?
I think i start to do research in my holidays. I need to take more vit. So you will have homework during the holidays;)
-
Dear Dore,
The facts about vitamin C in thalassemia major are as follows,
There is often significant vitamin C deficiency in thalassemia major. Vitamin C is necessary for among reasons, the immune system, the circulatory system (healing bruising), bone health, and health of the skin.
There are two problems with taking vitamin C in thalassemia - therefore vitamin C doses must be timed very well.
1) Vitamin C increases iron absorption in the gut - therefore it should not be taken with meals (especially meals high in iron)
2) Vitamin C causes iron to be expelled from the liver - therefore free iron is available to damage other organs - therefore vitamin C is best taken 1/2 hour after the beginning of desferal infusion.
If vitamin C is taken 1/2 hour after starting desferal then it can be helpful - because desferal cannot enter organs to remove iron - so if vitamin C can release iron from the liver desferal has more iron to bind and remove from the body. My 29kg son takes 250mg of vitamin C after beginning desferal infusion. This serves two purposes for him, it helps chelate more iron and it restores the vitamin C in his body to counteract vitamin C deficiency.
Dore, I know that you are not able to tolerate desferal - we are currently trying to determine whether it is okay to take a dose of vitamin C with exjade - because the mechanism by which exjade chelates is different than desferal. We don't know if exjade would mop up the iron released into the blood stream as efficiently as desferal does.
Remember, by storing most of the iron (to a certain level) the liver protects the other organs from iron damage - therefore we don't want to release stores of iron from the liver without having anything to quickly remove this iron from the body. Perhaps in your case (we don't have enough information at this time) - tiny doses of vitamin C can be taken between meals because vitamin c is quickly metabolized and removed from the body it should not cause any cumulative issues.
Andy is the expert on vitamin C - perhaps he can shed some more light on this :)
I hope this helps Dore :)
Sharmin
-
Thank, your information does help.
Today I had write my memo for property law, but I also was searching on pubmed. Accidentically, I found the article what goes about me. It's funny to read it. Now I know more about my own enzyme defect.
In a 2-yr old girl a hemolytic anemia was present since birth requiring multiple blood transfusions
http://www.ncbi.nlm.nih.gov/pubmed/2220762?ordinalpos=346&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
(it's a pity that there's only this)
Also a dutch person has written a thesis about pk def. We got his thesis, but I never read it. I think my father did. I am looking for it. Don't worry I know that there's a possiblitlity that I won't pass page 3 :wink
Once again: Muchas gracias :smileblue
-
Hello,
I started with Centrum Silver a month back. One tablet daily. Is that cool enough or I need something more?
\peace/
-
What Sharmin has said is correct. Vitamin C should be taken between meals, so that it doesn't cause added iron to be absorbed from foods. (However, the effect of C in this process is now in question and apparently, vitamin C does not necessarily cause excess C absorption, but to be safe for now, do take it between meals). It has been believed that citrus fruits should be taken between meals as to minimize iron absorption.
Of course, this all flies in the face of reality because vitamin C is the single most important vitamin and we know that thalassemics are almost universally deficient in vitamin C. High doses when used with desferal are thought to be unsafe because of the possibility of high amounts of iron being released into the blood where they can gather in the heart causing some reduction in heart function. The doses cited were 800 mg or more, so we always recommend taking no more than 250 mg daily for thalassemics.
Now, for some research that blows up the theory that C should be avoided because it raises ferritin.
http://www.mayoclinicproceedings.com/inside.asp?AID=4676&UID=
Higher fresh fruit intake, excluding citrus fruits and citrus juices, was associated with significantly reduced serum ferritin levels in men for both age-adjusted and multivariate-adjusted values (P=.002, Table 3). Adjusted mean ferritin levels were reduced with consumption of 7 or more pieces of fruit per week, with the lowest mean and adjusted mean ferritin levels seen with consumption of 14 or more pieces of fruit per week (Table 3) (ie, 2 or more pieces of fruit daily on average). This level of consumption was associated with a reduction of approximately 20% below the mean value of approximately 180 μg/L (to convert to pmol/L, multiply by 2.247) of ferritin seen in the groups consuming 0 to 6 pieces of fruit per week (ie, <1 piece of fruit daily on average). No significant effects of any kind (P>.1) were observed for fresh fruit consumption in women (Table 3). Consumption of citrus fruits and citrus juices (specifically orange and grapefruit) did not confer protective effects, with no significant effects on serum ferritin levels in either sex (Table 3). Consumption of vitamin C alone or as part of a multivitamin supplement did not affect serum ferritin levels in either sex (P>.1, data not shown).
Non-citrus fruits actually lowered serum ferritin in subjects. Citrus did not lower ferritin, but it also had no effect on raising ferritin. This is alarming news in light of the warnings against eating citrus or taking vitamin C supplements.
I have always realized that there was a major paradox when it comes to vitamin C and thalassemics. Thals are almost always deficient but have been warned against taking C. My intuition has always told me that this thinking cannot be correct. This study basically blows apart previous thinking about vitamin C. While thals should avoid large doses, they should NOT avoid vitamin C altogether. You read it here first. Whether you are using desferal or not, please take vitamin C supplements or eat some citrus daily. Your (bruised) body will thank you. The other part of this study shows that non-citrus fruits actually lowered serum ferritin so eat up!
This is huge. I would be very interested in what Dr Vichinsky has to say about these findings.
-
Andy, that is amazing... but on what basis we had our old idea that citric fruit increases the ferritin level?????????? It should be studies too or what??? Is vitamin C still help in iron absorption????
Maybe vitamin C increases serum iron which is used by the body and thus does not stored as ferritn and therefore ferritin desn't increase??? Totally confused :huh :huh :huh :huh
manal
-
Andy,
If citrus does not increase SF levels then the reasoning behind pairing it with desferal chelation also changes. If vitamin C does not release iron stores from the liver then it does not make more iron available in the plasma for desferal to remove. Nonetheless, vitamin C is important for the body so it is best to take it.
Sharmin
-
I don't think you can conclude that vitamin C doesn't release iron from the liver because we are talking about serum ferritin and not free iron. This is a very important distinction. What this shows is that vitamin C is not increasing serum ferritin as relates to diet. I think that it still holds that C does release more free iron from cells and is why we still need to stick to relatively low doses of C for thal majors. However, thal majors should not have to watch their diet to avoid C foods and a small (250 mg) dose daily should be perfectly safe. Just this amount would correct many problems, so thals who are trying to avoid C altogether can rest assured that they can eat citrus and take a supplement daily. For thals who bruise easily, please pay attention to this. Vitamin C can do a lot to prevent bruising. but even this is not the most important thing. Part of the long term problem with thalassemia in addition to iron overload, is the reduction of function of blood vessels. This is reflected in easy bruising. Vitamin C is essential for normal health of the circulatory system. I would add vitamin E, magnesium, maybe vitamin D, and nitirc oxide inducers such as L-carnitine and to this mix. Preventing a reduction in efficiency of blood vessels is extremely important. as this is the main cause of heart failure in thals after iron overload, and I suspect, these nutrients will do much to prevent the pulmonary hypertension that is so common in older thals and especially thal intermedia (60% rate of PHT).
I do believe that everyone can benefit from certain supplements but with thals, they become a matter of health and should not be considered optional.
-
Andy,
Thanks, that post fills in a lot of gaps in my understanding. I so wish that L-carnitine was available in Canada :wah.
Sharmin
-
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 :wink
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 :biggrin
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.
-
Thank you Andy,
I do went to 2 Dr in my country, one from FV hospital (international hospital) and one from Blood transfusion and haematology center of Ho Chi Minh City...
The first Dr look at the HbF and said he is in Intermediate to Major Thal
The second Dr said he is not Minor Thal, and sugest to follow him and do blood test every 6 months.
I myself confuse and come to this site for helping.
Now I'm clear, once again...thanks tou so much Andy!!!
:ty :ty :ty :ty
-
Aryaka,
I am very glad to know that your child is not likely to have thal major or intermedia:) I still think that it is a good idea to give your child a well balanced diet and to slowly introduce supplements.
Sharmin