WHAT IS YOUR FERRITEN LEVEL

Sharmin ,
its realy nice to hear that his SF Level is lower than  it was earlier this year ,  its a super good sign  as he had a big gap in chletation therapy duraing this summer, but he got the controle over his  ferrtin after that gap ... i hope & wish that he will do more better in few months and his SF level will decrease more ....  Wish You & Littlle A, all The Best of Luck for his SQUID Test ... he showing a good progress in  chelation and combination Therapy of Desferal + Exjade proving its self as it is  showing the good results ... 

as I had said earlier his skin color has changed very significantly

yeah , he is a super cute little boy ... .  for Little "A" ..

Best Regard
Take Care
Umair

That's great Sharmin  it'll be more low with the time being as he is chelating faithfully,good luck .

Zaini.

hey sharmin sis,

its gud to hear from you that little boys got his ferriten decreased hope that he will work on that more and more

and what is SQUID test i havent heard before of it.

thanks and regards,
jatinder kewlani

Hi Jatinder,

You can read about the SQUID test at posts at http://www.thalassemiapatientsandfriends.com/index.php?topic=86.msg379#msg379  and
http://www.thalassemiapatientsandfriends.com/index.php?topic=2163.msg18546#msg18546

Sharmin, congratulations my friend, very soon he will be below the 1000, i am so happy

manal

Thank you my friends,

We would not have been here without your help and support.  I am so glad to be sharing this with you guys 

It is strange how we had been taking little A to Oakland for years for the annual SQUID test (except 2006 and 2007) - but it never occurred to us that we should see Dr. Vichinsky.  I am so glad that Andy suggested that we repeat the SQUID and meet with Dr. Vichinsky too - I can't believe that we had been overlooking this all of this time.  Being under the care of Oakland Children's hospital has changed things for the better for us.  Had we not started the combination therapy and treatment for antibodies we were headed for trouble.  The iron overload could have led to liver, heart or pancreas problems.  Also considering what age little A is, it would also have interfered with his growth and development (he has grown 4cm since beginning the treatment and gained 3kg in weight).   I am so glad that the doctors in Oakland are working to stay ahead of these problems.   My hope now is that others learn from our experience.  Many people have contacted me about antibodies - I really hope that they stay on top of the situation - especially especially the chelation. 

Thanks again my friends,  I love you all 

Sharmin

Hi Jatin ,
it's just to remind you , its 2 months and 4 days has passed = 31+31+4= 66 days , and 54 days remained ... keep it up JAtin you can do it .... i m waitnig to hear the good news of your Ferritin Drop ... come on budy ... 


Best Regards
Take Care
Umair

     

Zaini.

Hi,

I'm from the UK and my ferritin is currently 477 (blood test taken on 26/04/2010). My ferritin dropped as low as 197 but that was my fault as I didn't check my ferritin for months.

I am on combined treatment of Desferal and Deferiprone, but my treatment has been put on hold as my ferritin is too low so once it goes above 500 I am on a bit of a holiday.

I have felt both sides of the ladder, very high ferritin and very low ferritin now. In 2003 I developed iron overload in the heart and liver which caused me to go into cardiac failure. I don't know how I managed to survive it but I did and then was on the 24 hour a day desferal infusion for 5 years and only then my ferritin came down to around 1000.

My advice to you is don't let your ferritin go above 2000 if you can as the complications that come with it put a complete halt on your life and you never feel the same after.

Hi,

I'm from the UK and my ferritin is currently 477 (blood test taken on 26/04/2010). My ferritin dropped as low as 197 but that was my fault as I didn't check my ferritin for months.

I am on combined treatment of Desferal and Deferiprone, but my treatment has been put on hold as my ferritin is too low so once it goes above 500 I am on a bit of a holiday.

I have felt both sides of the ladder, very high ferritin and very low ferritin now. In 2003 I developed iron overload in the heart and liver which caused me to go into cardiac failure. I don't know how I managed to survive it but I did and then was on the 24 hour a day desferal infusion for 5 years and only then my ferritin came down to around 1000.

My advice to you is don't let your ferritin go above 2000 if you can as the complications that come with it put a complete halt on your life and you never feel the same after.

very happy to hear that and cheers to you mate . u r a role model really. My iron is i guess 1900-2200 and im going to start desferal + exjade from tonight ... previously i ws using feriprox + desferal.had no side effects but they gave me exjade. I want my iron  below 500 and u all guyz r a model for me really   because ferriprox is no longer available in my area so

Hello devesh,


In my Unit we do not stop chelating when having this ferritin level. Mine has been down to 45 and I never stopped chelation- in a little slower rate maybe, but complete stop? no. Never. Of course, we are very closely monitored to do that.

Lena.

Hello devesh,


In my Unit we do not stop chelating when having this ferritin level. Mine has been down to 45 and I never stopped chelation- in a little slower rate maybe, but complete stop? no. Never. Of course, we are very closely monitored to do that.

Lena.

Lena whats the unit for ur 45 ... is it ng/ml ? or what?

Waleed,

I do not understand your question...
When saying Unit I mean the Hospital where I go for my transfusions, the Hospital Unit and 45 is my ferritin count.

Lena,

Waleed is talking about measuring unit of ferritin,i guess its ng/ml right?

Waleed,

I guess its ng/ml ,As Lena has maintained her ferritin with in normal range .

Zaini.

zaini is right ... is it 45 ng / ml  it wud son b touching the lower limit then