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.
After 40 some phlebotamies I am finally approaching the maintenance phase.
I will see my hemo next week for my two month visit and want to cover tratment protocol from here on out. I had a phlebotamy yesterday and my ferritin was 77. The ferrition has been dropiing pretty consistently around 30 point per phleb. I have seen different protocols on maintenance so here are the ones I am considering. I have not been symptamatic during this entire process so i cannot use " how I feel" as a guide.
1. Go to the redcross every two months and try and get a ferritin test on a monthly basis.
2. One site recomennded reducing the ferritin to 10 to make sure the entire body has been deironed. ANother site suggested giving blood until the hemoglobin stayed low for a three week period.
3. accept my hemo's advice which was ferritin under 100 and do what he says.
Let me know what you guys suggest and thanks for your input
I will see my hemo next week for my two month visit and want to cover tratment protocol from here on out. I had a phlebotamy yesterday and my ferritin was 77. The ferrition has been dropiing pretty consistently around 30 point per phleb. I have seen different protocols on maintenance so here are the ones I am considering. I have not been symptamatic during this entire process so i cannot use " how I feel" as a guide.
1. Go to the redcross every two months and try and get a ferritin test on a monthly basis.
2. One site recomennded reducing the ferritin to 10 to make sure the entire body has been deironed. ANother site suggested giving blood until the hemoglobin stayed low for a three week period.
3. accept my hemo's advice which was ferritin under 100 and do what he says.
Let me know what you guys suggest and thanks for your input
when you donate blood do they give you a Hgb number or a CBC where you can look at the MCV number ( supposedly MCV can be used as a substitite for ferritin according to some studies).
good to know about this ferretin sub...
"Accept those with a hemoglobin at or above 12.5 g/dL.and those with a hematocrit at or above 38%"
My Hematologist didn't think any useful data could be derived from the iron test they perform before you donate. I just got a new donor card after my 29th donation. Maybe overseas they test for more and can tell you a bit more about your blood.
I made my last weekly visit to my hemo. my ferritin number was 64 and we did a phlebotamy so my ferritin is probably under 50 now. The plan I agreed to was to come back in 3 months for phlebotamies and measure the ferritin and adjust phlebotamies as required.
My Doctor is focused on keeping the ferritin under 100 and since I have not had any symptoms or abnormal lab results, I am Ok with this approach. I think I will get some data on 3 month frequencies and adjust as required.
I did get a copy of all my lab test and graphed the ferritin versus number of phlebotamies. What my experience was that after the first few phlebotamies, my ferritin decreased about 40 points per phlebotamy with a strating ferritin of around 1200. In looking at the big picture, it was the overall trend versus the ups and downs from week to week that made sense to me. If anyone wants the data send me your e-mail and I will forward it on to you.
Since I have met my deductible for the year, I am planning to see a MD with a complementary approach and get some more thorough additional test done on heavy metals and any depletions due to the year and a half of phlebotamies. I will let you guys know the results.
Once again thanks for all your info and support and let me know if I can be of assistance to any of you guys.