Discussion Forums > Thalassemia Major

Question for Andy...

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Lena:
That's right Andy. I am on desferal again and do not think of stopping it ever again, just lower it maybe.
I think it is necessary for the liver to keep it clear--that or exjade.

A mistake many thals do, is to over-evaluate things when stopping desferal. They think they get a permanent divorce from it and they get dissappointed when returning to it.
No, combination therapy is what makes things run.

Lena.

Manal:
I would like to stress on the importantce of doing T2* and ferriscan (  if available ) cause ferritin levels are not always a reliable mean of measuring iron overload in organs. We can have a normal level of ferritin as in Emby's son and at the same time iro is being loaded in the organs.

manal

Lena:
Manal is right,
T2* is necessary and doing it once a year is a must to check out the iron in the organs and reevaluate the chelation therapy.
There are occasions when serum ferritin is high and there is no iron concentration in the organs and the opposite can also happen, though I would say these are mainly exceptions. The rule is high sf leads to high organ iron and the opposite.
That is, at least,what I have seen happening.

Lena.

Andy Battaglia:
Lena,

Do you know at what age children get their first T2* in Greece?

Lena:
Andy,

I think one of our "baby" thals of about 8-9 years old has done her first, but let me check it out and I will let you know for sure.

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