Iron Overload from Transfusions ever lead to Hemachromatosis?
 

Hi - New guy here!

I was treated for severe Aplastic Anemia at the NIH in Feb. 2007... Rabbit ATG, followed by 6 months of fairly heavy Cyclosporine. Countless platelet transfusions, and perhaps 30-50 bags of red blood over that period.

No transfusions of any kind since August 2007.

In early 2009, they decided I was healthy enough to start stripping out the excess iron with phlebotomies, and I did one every other month.

I started out with a ferritin level near 2800, and it came down with each of the first 5 phlebotomies... Something like 2400, 1800, 1100, 900, 700...

A few weeks after the 6th phlebotomy we checked the level and it was back up to 1189. Checked again three weeks later and it was the same.

Seems odd to have a spike like that... and not enough time has passed to have a sense if this is an upward trend, or just some fluke.

Anyway - they are now doing Hemachromatosis / HFE gene testing. ANyne ever get diagnosed with Hemachromatosis after transfusions? Would it suggest I may have had it or was susceptible to it previously?

Doesn't change much no matter what the results are... I am back on the phlebotomies in a few weeks, btu I was just curious if anyone else has something like this.

Thanks!

John doesn't have hemachomatosis but we were told that if you have it, it may not show up til later in life.

Even after you get your FE down from phlebotomies, I think your body will still pull iron that's stored in your organs and bind to the circulating FE protein like it's supposed to do. Which means you may see your FE rise after you thought you got it all out. This is just my opinion though.

It's good they're doing the gene testing.

Thanks Marlene - I was wondering if it was possible for some to have settled and that it might be able to get back into my blood stream. I forget the exact analogy my Dad made, but it was something like a mud puddle being clear until you stomp in it... :D