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.
Hi All - I'm interested in learning about when others decided to start phlebotomy as I was recently given the choice to start phlebotomy now or continue to just monitor it (I've opted for monitoring). I feel like it's too soon for me to start treatments as my levels aren't too high yet, and my liver levels are perfect.
A little more of a background: I'm a 30 year old female and was diagnosed with HH 4 years ago, at 26. I feel very lucky that I was diagnosed at a young age as HH has not yet effected me in a negative way (and I'm hoping it won't since I'm able to start monitoring it at a young age.) Right now, my ferritin is at 223 (the range I was told it should be between is 30-202). So I'm only 21 points over the range. All my other levels are fine. However, my ferritin has jumped from 126 since the last time I got tested... 1.5 years ago.
I'm a little surprised my doctor gave me the option to start phlebs now (although she did recommend to just monitor and get tested every 6 months) -- which brings me to my interest in learning what levels others were at when starting phlebs (especially if they caught it early like me!)
ALSO, as I'm analyzing my results, I noticed that my iron saturation was high between 2012-2016 (in the mid 50% - mid 60%) with normal ferritin levels. But with my latest results, my ferritin is high and my saturation is at a normal level (32%). Is it common for levels to flip flop like that?
Any input? Thanks!!
I live in the UK. At diagnosis my serum ferritin was 387 and my transferrin saturation was 89%. My ALT levels were raised. I started on once-weekly phlebs almost immediately, then fortnightly, then every three weeks until my ferritin levels were below 50. That took several months. My haematologist insists that my ferritin levels are kept below 50 so that I don't have other problems especially problems with my liver.
I'm also worried about my hemoglobin level as it is already being flagged at 11.6. Is there a chance that my hemoglobin level would show me as being anemic even though my serum ferritin is 156?
I'm so confused....
As I understand it, you can have low iron levels (anemic) and still have high ferritin levels (in fact it may be typical for those folks getting phlebs). Certainly a balancing act. The two are not directly related, again as I understand it. Ferritin is a measurement of how much iron is in "long term storage" in your organs not the amount of iron in your blood. That is why giving blood at a blood bank is OK now after some rules have been changed.
For example, all my iron numbers are normal, but my ferritin level has been between 800 - 1000 the past few months. As this writing the doctor cannot figure out the problem. A concerning problem for me.......
My understanding of Hemochromatosis is still fairly basic, so hopefully others will have a better explanation.
Remember there are many forms of anemia ,,,Start taking b12 Methyl coblamin or get shots..Your rbc will come up....Iron is only one form of anemia ...You need your rbc to jack up and help you ..