A few interesting bits of information about iron and chelation

We learned some interesting facts regarding iron and chelation in Oakland.

1) It is important to maintain iron levels as low as possible, especially during adolescence so that normal height and development can occur.  It is important to keep iron out of the hormone producing glands during these years.   Low iron is most important, secondly, during these years it is better to be taking exjade rather than desferal if possible because desferal has some effect on cartilage in the spine causing shortened trunk length.    If exjade is well tolerated then it is preferable to be on exjade during these years.  BUT it is better to be on desferal than to have high iron - because iron overload causes much more damage to growth potential than desferal - not to mention other organs in the body.  Children with adequate hemoglobins and low iron levels should develop normally and fertility should be preserved.  Genetic height potential should be reached.

2) We have learned that it is not necessary to wait 1/2 hour after starting desferal to take vitamin C - in fact in Oakland they have patients take vitamin C 1/2 hour before beginning desferal.  We have decided to take it at the same time that desferal infusion begins.  It is not recommended to take vitamin C without desferal. 

3) We have also learned that not all forms of free iron are measurable, therefore even with SQUID, T2* - all forms of iron in the organs cannot be seen.  Therefore, we were told that it is very important to have antioxidants on board to protect against this iron damage.  L-carnitine and alpha lipoic acid is being studied for this purpose and believed to have protective effects.  L-carnitine along with having effects on the vascular system due to it's Nitric Oxide inducing properties - also protects the heart from oxidative stress caused by iron. 

4) IP6 has some of the same properties as black tea 1) interfering with iron absorption from meals 2) antioxidant properties - binding with free iron. 

5) iron chelators can have drastic effects by chelating other minerals in the body - so zinc and other trace minerals must be replaced - again Centrum Silver was suggested. 

6) Antioxidants and Supplements are the way of the future in thalassemia care!!!!  This was stressed over and over again - it has been seen and measured over and over again.  (Provided that the patient is properly transfused and chelated).


I will post more as I work through my notes.

Sharmin

I am pleased to hear how much antioxidants and supplements are being stressed for treatment of thalassemia. I have promoted this since this group was on MSN and often talked about the importance of replacing the nutrients lost to the stresses of thalassemia, the importance of protecting your cells from the oxidizing effects of iron and that for thals to have their best quality of life, they should try to optimize their health with a good diet, supplements and exercise. It is gratifying to hear that the top thalassemia doctors in the world are stressing the same thing. This is advice that no thal should ignore.

Thanx Sharmin for such an informatve thread , and

@ Andy , thanx  for   always being there for us , and guiding us to the right path of treatment of thalasssemia ....

May God bless you both ....

Best Regards
Take Care
Umair

It is not recommended to take vitamin C without desferal. 

Does this mean, no Vitamin C for those on Kelfer (L1) or Exjade?
Sorry, I know we have posted about this earlier, but I am not sure where.

Sharmin,

Thanks for the info .

4) IP6 has some of the same properties as black tea 1) interfering with iron absorption from meals 2) antioxidant properties - binding with free iron. 

But IP6 is supposed to be taken on empty stomach,the how it would inhibit iron absorption from meals?

Zaini.

Narendra,

Does this mean, no Vitamin C for those on Kelfer (L1) or Exjade?

This is what I was told in Oakland because vitamin C releases iron stores from the liver and can possibly release free iron into the heart and other organs.  Andy has discussed the possibility of taking small doses throughout the day - as vitamin C passes through the body quickly but I don't have more info on this.

Zaini,

But IP6 is supposed to be taken on empty stomach,the how it would inhibit iron absorption from meals?

To be honest, I have also gone back and forth on this.  Some bottles of IP6 suggest that it be taken on an empty stomach, some don't indicate this at all.  If food does not interfere with the absorption of IP6 then it makes sense to take it with food b/c of the added benefit of preventing iron absorption.  If food does interfere with IP6 absorption then it should be taken on an empty stomach and have the benefit of IP6 binding free iron.  The most important benefit of IP6 is it's ability to bind free iron and prevent iron damage.  (once bound iron cannot damage tissue). 

Andy, do you know if IP6 necessarily needs to be taken on an empty stomach?  Does food interfere with the absorption of IP6? 

Sharmin

IP6 can react with protein so it's best taken on an empty stomach. It is highly recommended to take tea with meals to prevent iron absorption from food.

For those not taking desferal, I suggest getting vitamin C from citrus but between meals so the C does not add to iron absorption.

I think we have discussed it before,that even if you are on desferal,and you have really high iron levels,i think it's better not to take Vitamin C,because too much iron is already present in the blood and more iron getting released can cause problems for heart.
One of our members Tariq told me that although he is compliant with the chelation,his ferritin was rising,he is on combination therapy of L1 and desferal,so he has now stopped taking Vitamin C with the desferal,lets see if it changes the result.

Inhibition of iron absorption is associated only with black tea? And not green tea?

Zaini.

All tea inhibits iron absorption, although green tea is a better source of antioxidants.