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.
I was hoping to find a standard schedule for my maintenance such as gidget with a phlebotamy every so many weeks.
So I thought the numbers were saying i need a phleb every two months so I was at a ferritin of 85 so I did a double red donation at the red cross and waited four months and ferritin came back at 120. Just went to the red cross and did a regular donation and will test ferritin in 6 weeks.
One of the things that may be causing to make me load iron more rapidly is I went on testosterone supplementation. I read some articles that testosterone downregulates hepcidin which HHC people are low in anyway. Supposedly this will make me absorb more iron if I understand the data correctly.
My other quandry is do I keep going to the red cross and have them stab me with that large 14 gauyge needle or do i go back to my hematolgist and pay my $50 and have them use a 19 guage needle and throw the blood away.
I'll keep you guys updated as the saga continues.
So I thought the numbers were saying i need a phleb every two months so I was at a ferritin of 85 so I did a double red donation at the red cross and waited four months and ferritin came back at 120. Just went to the red cross and did a regular donation and will test ferritin in 6 weeks.
One of the things that may be causing to make me load iron more rapidly is I went on testosterone supplementation. I read some articles that testosterone downregulates hepcidin which HHC people are low in anyway. Supposedly this will make me absorb more iron if I understand the data correctly.
My other quandry is do I keep going to the red cross and have them stab me with that large 14 gauyge needle or do i go back to my hematolgist and pay my $50 and have them use a 19 guage needle and throw the blood away.
I'll keep you guys updated as the saga continues.
After all, I loaded for decades without even knowing I was loading. Sometimes we don's see the forest for the trees.
Since iron is only released in the stool its important to make sure you are having as many bowel movements as possible. Besides periods for women.
I use a phlebotomist for blood taking but have had the need to go to blood banks occasionally and yeah, that large gauge needle is the worst! Especially if the nurse is not handy with the syringe!