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 12/03/2011

I just got my monthly test results back. I have gone two months with no phleb. My results are as follows:

iron went from 111 to 262
Sat % from 45% to 90%
Ferritin from 22 - 38

My ferritin remains in good range and i think I feel better at 38 than i did at 22. Can anyone tell me what drives your maintenance schedule. Is it based only on ferritin number or would you have a phleb if your iron and sat% are climbing, even though your ferritin number remains low?

deleted_user 12/04/2011

I have been at this for @ 22 years and have seen several docs over that time. They all want to maintain ferritin just above anemic. I went along with that for a while, but eventually started insisting on keeping it closer to 100. I feel better at 100 than 22 and I don't need as many phlebs. The number of phlebs can become a problem over time, as your veins develop scar tissue and they start running out of places to stick. Besides that, every time I get a phelb it knocks me for a loop and basically ruins the rest of my day. A ferritin level of +/- 100 is in the normal range and, as far as I can tell, is a safe maintenance level.

You absolutely must educate yourself and take control of your care. Don't turn your life over to doctors. They can do as much harm as good. It's your body. Never forget that.

jbelar 12/05/2011

I am pretty much in control of my treatment and maintenance. We decided ferritin should be at or below 50. So far, 22 was too low for me but 38 is good. My real question is, is it normal for your iron and sat% to rise first then your ferritin? My results show a pretty big increase in iron but not so much of an increase in ferritin. Just curious if the iron and sat% matter at all in this.

GidgetD 12/06/2011

I keep my ferritin around twenty, never over 40. That is what works best for me.

jbelar 12/06/2011

@ Gidget... when you ferritin is between 20 and 40, what is your iron and Tsat % at?

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