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 diagnosed homozygous last February and went to a hematologist and he started phlebs on a biwwekly once every 3 week basis of only 250 CC's. Initial ferrittin was 1200-1330 and if I drank heavily the numbers spiked beyond that.
Have been able to donate at a couple of blood banks and just answered the questions honestly ( i.e we do not have blood disorder we have a digestive malfunction)
I have had the equivalent of approximately 22 full phlebs, but seem to be plateauing at a ferritin level of around 800. Currently I am giving 250 CC once every two weeks and the HGB stays in the 13-13.5 range. When I gave every week the numbers dropped into the 12-12.8 range and my doctor backed off on the frequency.
I thought that the HGB numbers stayed high until you were de-ironed.
Thanks in advance for your feedback.
Have been able to donate at a couple of blood banks and just answered the questions honestly ( i.e we do not have blood disorder we have a digestive malfunction)
I have had the equivalent of approximately 22 full phlebs, but seem to be plateauing at a ferritin level of around 800. Currently I am giving 250 CC once every two weeks and the HGB stays in the 13-13.5 range. When I gave every week the numbers dropped into the 12-12.8 range and my doctor backed off on the frequency.
I thought that the HGB numbers stayed high until you were de-ironed.
Thanks in advance for your feedback.
Michael even 12-12.8 is still in the normal range for your HGB. I don't think your doctor is being aggressive enough with your condition. Your HGB will drop when doing phlebs because it is taking out platelets and red blood cells.
Honestly, I don't think you are phlenbing often enough and that is why you are not dropping anymore. Your body is making iron faster than your doctor is allowing you to take it out of your body.
Most people do a weekly phleb and there are some that do it twice a week. As long as your counts do not drop to low. You will be fine.
This is just my opinion!!
Good luck.
I did give a full unit of blood to the red cross last Friday.
I do have some gout in my body so I am wondering if the inflammation could be linked to the ferrittin number a little bit. My iron saturation number still stays in th 50-60% range( except for one test when it dropped to 30%) so I am assuming that when I am deironed the iron saturation number will stay decreased.
If my ferritin was 800, my doc would have me on weekly phlebs until I got down below 50. (my ferritin is coming down, but remains really high, hence the twice weekly phlebs and always 525-600ml)
Welllll, my ferritin is down to around 4000 but I'm due for another level next week, I think. I'm still doing 2 phlebs p/wk... 550-600ml EACH. Today, my HGB was 10.0 and HCT was 30.5. We did the phleb without waiting for the HGB level to come back, since I always feel OK. No more!!! I'll be waiting. My spunk is gone today!. When I left the office, I headed to Wendy's drive-thru and got a double bacon cheeseburger (I haven't had any red meat for about 4 weeks). Gotta get the HGB up above 10-11 so I don't have to skip the phleb on Monday!
On another note... Look at the front cover of the Guide to Hemochromatosis book and the other main HH book (I ordered both plus the cookbook and got them this week). The first name on the scientific advisory board is Dr. Means... he's at the Univ of Kentucky!!!!!!! about 1 hr from me!!!! AND the other book is authored by Dr. Weinberg and he's in INDIANA!!!! Just across the river from me-probably closer than Lexington! Dr. Weinberg is also named on the front cover of the other book!) I showed my hemo today... he's going to look them up, see what my ferritin is next week and may send me to one of them for a consult.
I cannot BELIEVE I had an HH guru soooooooooooo close to me!!!
Right now I was measured at 13.4 before my last blood donation. I would like to stay above 12.5 so I can donate my blood to a blood bank.
I did spend some extra money and get a ferritin test done through seconoLABS yesterday, so i will let you guys know what the numbers look like next week.My iron saturation numbers typically are in the 50-60% range and actually dropped down to 30% once, so I am wondering if the ferrittin numbers might be high because of the gout I deal with.
My hemo going low does not bother me. I am a cancer survivor and have seen mine below 6.0 while hoping and waiting for someone with my blood type to donate blood.
My next withdrawal is scheduled for Monday if I am NOT anemic.