What's your ferritin level?

It was 796 in my last analysis

  +

Latest report says 465ng/ml. Its been two months am off chelation.


\peace/

Sahil, you are an inspiration

manal

Latest report says 465ng/ml. Its been two months am off chelation.


\peace/

Wow,that must be a relief.Were you on Asunra or desferal?

Zaini.

I was on combination (Desferal and Kelfer) for 3 years. Then when the S.Ferritin was 337ng/ml I started off with Asunra (I shouldn't have started though). I was on Asunra for 3 months. The lowest S.Ferritin being 279ng/ml.

And yeah it is a relief. Cause I was damn scared when my S.Ferritin was 9000ng/ml three and a half years back.


\peace/

We have afew members whose ferritin levels were very high once,and then they lowered it down with compliance,but when the ferritin is that high,it causes organ damage right? so my question is once ferritin level is lowered,is this damage reversible,i mean once ferritin gets low,the damage occured to organs while ferritin was very high,repairs itself? I hope i am making sense  .

Zaini.

Zaini,

That is a great question, and organ damage can be reversed considerably with chelation.  Also, the use of antioxidants can help with this process.

Sharmin

Dr. Wood in Singapore said that heart failure could be reversed after getting rid of the loaded iron

manal

Organ damage can be reversed through aggressively chelating iron and adopting a program intended to prevent any recurrence of iron overload. There is a lengthy report in our documents section that explores where we are today in terms of addressing the issue of iron overload in the heart and what can be done to reverse the iron overload and restore the heart to normal function. This document should be brought to the attention of any hospital or doctor that is treating cardiac failure in thalassemics, as the protocol for treating cardiac failure in thalassemia is significantly different than it is in non-thals. If this protocol is followed, many lives will be saved, because the damage is reversible and so is cardiac failure when approached in a timely manner and this protocol is followed. This is extremely important. 

http://www.thalassemiapatientsandfriends.com/index.php?topic=1451.0

Treatment of iron induced cardiomyopathy requires close follow-up and significant effort until the patient is stabilised. If the patient survives the acute phase, the potential reversibility of heart injury by heart iron removal promises an outcome better than that seen in the past in such situations and may be better than that seen with other causes of cardiomyopathy with equivalent clinical severity in the general population (29). However as Hippocrates stated, it is better to prevent than to cure. Today the great challenge in TM patients is to achieve even better results in preventing heart injury.

I would like to add to this that part of every thalassemic's treatment program should include helping themselves through the constant use of supplements, including the very important antioxidants. The amount of damage to the organs caused by iron can be reduced through the use of supplements that can protect your cells.

my son's ferritin level is 1500.he has been on desferal for about 2 years now.it was around 2200 when we started using the pump and we hope to reach a lower level soon

Welcome Hala  ,

How old is your son?  1500 is a pretty good ferritin, but you are right the lower you can get it the better:) 

We look forward to reading more of your posts,

Sharmin

Hi Hala,

Welcome on the forum,ferritin of 1500 is not that bad for a 13 year old,but the lower the better,goal should be below thousand,since he has sickle cell,how often is he transfusing?

Zaini.

hi sharmin
my son will be 13 next april,he started desferal in march 2006 and doing ok at the moment.the thing is i thought his iron level would drop lower by now.is it normal/

hi Zaini,
he has been getting regular transfusions every 4 weeks since Nov 06.before that he had a few transfusions when his HB goes too low(around 30) had his spleen removed at 4 years of age

Hi Hala ,
  to the forum .