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 went from 900 to 30 in about a year. Hem says to keep ferritin under 50. Phleb if over. He did an iron panel with those results> Iron 305,
UIBC 51, ferritin 56, %transferrin 86.
He seemed disturbed about the %transferrin saturation, told me to get a phleb right away, tests in two weeks, another phleb in a month.
I am now wondering: why only test the ferritin if that has no correlation with the % of transferrin, which sounds like a bad thing if elevated?
I would appreciate any input from anybody.
Langlois
UIBC 51, ferritin 56, %transferrin 86.
He seemed disturbed about the %transferrin saturation, told me to get a phleb right away, tests in two weeks, another phleb in a month.
I am now wondering: why only test the ferritin if that has no correlation with the % of transferrin, which sounds like a bad thing if elevated?
I would appreciate any input from anybody.
Langlois
I have hemochromatosis and have been at it for about 32 years.
I have been through about the same situations that you are going through. How many phlebs did it take for you to get down to normal, so to speak? It took me 24 to get down to normal with a ferritin in the 800 range.
Have you had any phlebs since you got down to normal?
When my saturation would run up about like yours, I would have to go back to weekly phlebs for about 4 to six weeks in a row to get back to normal. thence about every two months.
Skeptical? You can check me out by searching (leslie n johnston,dvm) or (the irritable syndrome and the iron connection, leslie n johnston,dvm) and some other 'papers' that I wrote may come up as well.
The old doc said this