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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What happened?

langlois
langlois
I have been phlebbing for almost a year, plateaued at 260 for 3 months, then dropped to 120! My hematologist had suggested to go for more phlebs, so I went everyi 7 days and it worked! But now, my hematocrit was 38.2 last week, I had a phleb. Today, it was 37.4 so could not be bled... I had waited 10 days to give it a chance to come back up. I started at 750, and am afraid that the ferritin will go up unless I phleb weekly. What do you think? any way to help it climb up? I live at 5,000 feet, if that makes a difference. Any thought?
deleted_user
deleted_user
It's not gonna go up that fast. I wouldn't worry too much about it.
Evidently your body is trying to tell you something, maybe weekly is too often at this point. I went every 2 months towards the end. After I was de-ironed, I tested after 3 months w/o Phleebs,,it only went up 10 points in 3 months. Just be patient...you are almost there!!
deleted_user
deleted_user
Trial and error because we all load and unload at differant rates . Remember ,you were born with this and it took your body your lifetime to store it to the 750 .Your body wasnt ready for the rapid removal ,I went around every ten days then once I went under 100 they slowed them down more ,if you have your old lab results to look at you will see a pattern of how much ferritin drops at each phelb ,most people drop an average of 30 ,there was a graft posted here once so I pulled out my old labs and sure enough ,I was dropping around 30 points per phelb . Do you know your currant ferritin ?

Kat I load 10 points a month ,july they took me down to the single diget ,explains why I passed out for the first time ever ,aug I was up to 18 ,sept -28 ,I just had appt this week with no ferritin done,done go again til 6 weeks but suddenly I have all the severe fatigue symptoms again with the brain fog ,starting to wonder if my body decided to go into a ferritin fast load . I am back to laying on the sofa all the time because I just cant sit up without getting light headed .
deleted_user
deleted_user
Queenie... How's your blood sugar? Since phlebing, I have noticed that I must be having some low bs events (never had them before). I've tried Reese's Cup or eating a small meal.

Hope u feel better soon!
GidgetD
GidgetD
Langlois, I do not understand why they stopped you at 37 Hematocrit. I phlebb every three weeks and it never goes above 37. When I was phlebbing weekly it dropped to 31 and the Dr said as long as it stayed above 30 we were going to keep phlebbing. I guess the Drs are as different as we all are.
Queenie, You need to find a steady maintenence schedule, I can't see how it can be good for the body to have highs and lows like that on a continuing basis. I think your ferritin should be checked at every phleb until you get a set schedule and then keep checking for a while to make sure. I experimented with different times until I figured out every three weeks kept me right were I wanted to be 20-30.