Hemochromatosis Support Group

Hi, Did the doctor give you a serum Ferritin blood test? If so, this level should be between 12-150 ng/ml for a female. Get yourself a young hematolgist. They seem to know more about HH. I am 39 year old male and wish I had known a few years back.

-Keith

I am a 36 year old female. I was also recently diagnosed. I have had 5 phlebotomies so far (every two weeks) and they have already cut them down to every month (because my iron levels and saturation decreased rather quickly). I attribute the decrease in therpeutic phlebotomies, at least in part, to the fact that I have stopped taking estrogen-based oral contraceptives. I had taken the same pill for about 9 years and it had all but stopped my normal menustration (something I had no reason to complain about at the time!). However, now that my cycles are "normal," that probably means fewer and less frequent phlebotomies.

>My doctor told me that I didn't have to do that because I menstruate.

Menstruation does help to remove iron, which is why women with hemochromatosis tend to load iron more slowly than do men with the condition. But that's just a generalization, and your case may be different. What typically determines whether you need phlebotomies is your serum ferritin level. A hemotologist who is familiar with the disease will be able to investigate further and help guide you.

I was just recently diagnosed and have found that virtually NO doctors that my relatives (in 3 different states across the country) have given us accurate information. While what your doctor told you is partially true (having periods gives some protective benefit some of the time to some women) I have to agree with others who've posted that this is only a general statement. YOU need to know YOUR numbers: Ferritin and saturation % in particular. If you can get your doctor to order those tests, you can post your results and someone here will help you understand what they mean. Good luck.

That is a very general statement about menstation and in my case did not help me at all, and it was and is very regular. Find out what your ferritin is and monitor for the rest of your life. I was diagnosed at 38 but sufferred for years before that, I wish that on no-one. Gidget

Thanks for all the feedback! I don't have insurance so I bought an iron blood test online at... healthcheckusa.com It only costs $60.
this is what it does..


An iron profile measures the amount of iron in the blood. The transferrin saturation component measures how much iron binds to the protein that carries iron into the bloodstream. The TIBC, or total iron binding capacity is the component of the iron profile which measures how well your blood can transport iron. Serum ferritin evaluates the amount of iron in your liver. If any of these iron profile tests show high level of iron, your doctor may order an additional iron profile test that looks for the specific gene mutation. If your iron profile reveals excess amounts of iron, an liver biopsy may be required to see how much damage has been done due to the iron accumulations.

That'll give me what I need, right?
serum Ferritin should be between 12-150
and what should the saturation % be?

Your saturation should be below 50. Your ferritin is not how much iron is in the liver. Ferritin is a protein molecule that iron binds to and it then carries the iron to our organs like the liver pancreas, skin etc. If you have HH your ferritin should be below 50, for most of us anyways.