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