3 years ago I almost died. My iron levels were so low that I should have been dead. My hair had noticeably thinned. I was so tired that the last 2 days before going into the hospital, I slept almost all day long. I also thought that I was suffering from the worst asthma attack of my life.

How bad was it? I had to have 4 blood transfusions and 2 double dose, iron infusions before leaving the hospital. Then I had to go to the hospital 2 times a week for 2 months for iron infusions. My veins took a great beating from this. I used to have veins that were very cooperative and now they jump, roll and collapse....no fun at all.

My hematologist has diagnosed me with chronic iron anemia. She usually can get patients regulated and on a regimen of iron infusions to combat this. Mine is difficult to get regulated because my liver doesn't flush at a regular rate. It isn't correcting itself...like it does for most people. It fluctuates on how much iron my liver flushes. There doesn't seem to be any rhyme or reason to it.

Has anyone else had this problem? Mine seems to be genetic but so way worse than anyone else in the family has. It is frustrating, scary and confusing.

I am sorry to read about your anaemia.

Probably your haematologist has already arranged this but has your ferritin level been checked?

If it is low then the info in this site might give you some ideas to discuss with her; http://chealth.canoe.com/channel_con...=274&page_no=1 .

All the best.

Ferritin is the level that is checked for my type of anemia. The iron stored in your liver is called ferritin. So, I have chronic low ferritin.

I am trained as a medical administrative secretary, so I am used to changing medical terms into terms that more easily understood by the masses.

What my body does is my liver produces too much of the enzyme that protects your body from free floating iron. People with Hemochromatosis have the opposite problem. they don't have the enzyme so the liver stores too much iron because it constantly thinks that the iron stores are gone. My liver constantly thinks that I have too much of an iron store so it flushes out almost all iron that is not being currently used.

Sorry about the medical terminology lesson....I am off of my soap box now and to give you the short answer:

Yes, I get that level checked all the time. Thank you for asking.

Thanks for explaining Kanna.

Which enzyme are you referring to? Among other things I am a biochemist and one of my ex-PhD students has haemochromatosis.

I am not meaning to second-guess your haematologist but I might be able to come up with some ideas that you could run past her.

Apologies....it is not an enzyme....it is a protein malfunction that is most likely caused by a genetic mutation.

It is most likely the condition:

Iron-refractory Iron-deficiency Anemia

It is so rare that it gets as bad as it has with me. Most people with it, don't have it to the extreme of actually needing medical intervention. There are about 50 documented cases, of which, I wouldn't be surprised I am one of. My hematologist is trying to get it under control. There is no cure and the treatment is going to be for a lifetime. I figured this out when I was initially hospitalized and they couldn't find any GI bleeds nor cancer.

Hemachromatosis is also a genetic disorder but there are numerous different mutations that cause it. They actually type them according to the mutations in their DNA. There is a hemachromatosis society that can get your PhD Student in touch with professionals that can help. They do fundraising for research to find a cure and to raise awareness to others.

My hematologist told me that she suspected that it is genetic and she was going to treat it that way, unless it was proven otherwise.

I appreciate your suggestions about my ex-student . I haven't heard from her for a while (she is working in Germany) but I think that she is doing OK - she, for a combination of ethical and clinical reasons, is a vegetarian (keeping her iron load down) and gets regular phlebotomy as indicated.

As far as your Iron-refractory iron-deficiency anaemia is concerned, this is the best that I can come up with from a walk through PubMed; http://www.ncbi.nlm.nih.gov/pubmed/24808863 .

It seems that there are a number of possibilities for modulating hepcidin activity - all are from animal models.

Just a thought (I am not a clinician) but you could show that paper to your haematologist and see what she thinks.