Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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jbelar 05/02/2012

Does anyone have low ferritin of less than 50 but high % sat?

deleted_user 05/02/2012

Yep. Exactly that. I am in the process of finding out if I have genetic HH or not. And you?

jbelar 05/02/2012

I do have HH and have gone throught treatment but it seems i get low on the ferritin but my iron and % sat climb back up. I keep my ferritin at or under 50. I have been told the ferritin result is the driving force behind when I need another phlebotomy but I can't help but wonder if it is just as bad to have high iron and % sat?

deleted_user 05/02/2012

Ugggg. Makes sense. I wish I had an answer... I wonder something similar, even without having had the genetic test done yet.

deleted_user 05/02/2012

Yes, I do as well.

MissSophie 05/03/2012

Going through the same thing right now, driving my hematologist nuts. My ferritin is low but my iron and %sat is climbing.. back doing phlebs every three weeks. I also have HH.

MissSophie 05/03/2012

My iron is 113 and %sat 58, and ferritin 48. I know that when the %sat is up one is prone to more infections.

bronxpreston 05/03/2012

My SF was 36 and my sat % was 53% last week. I was having problem focusing. Was phlebbed and now feel better.
I use the Sat % to determine if I need to be phlebbed. If that goes above 50%, I get phlebbed.
JMHO
Diagnosed in 1998.

jbelar 05/03/2012

I guess everyone is different. Got my labs back today and my ferritin was 26, sat % at 55. If I phleb again now, based on sat %, I will become borderline anemic as I did with my first run. I got down to 22 ferritin and I felt like i couldn't even manage to get through my day. I was horribly fatigued. I spoke with my doc and she says it will take time to find the pattern, etc. 26 doesn't feel like 22 did. Perhaps my sweet number is ferritin between 25 and 30 so I can keep my % sat down. I don't know. Confusing.

MissSophie 05/03/2012

I know what you mean. One number goes down another goes up.. I feel like I am on a seesaw. This is no fun, not sure what my ferritin is at this week, just had my phleb today and feel horrible, won't see the doctor for a couple more weeks. Then he will decide if I can go back to my once a month phlebs.. Like everyone else I am confused.

deleted_user 05/04/2012

I don't know, My doctor only looks at SF. I never questioned him about it. But, I think I'll tell him about this discussion. Mmm. suzq.

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