Hi mysery, You are right. My state will not let me donate my blood because they have a law that says you cannot recieve any kind of payment for giving blood. I guess it is ok to donate to save someone elses life but not mine:) I would only get half the phlebbs that I need in a year also. Gidget

woops sorry I spelled your name wrong mystery, but it did give me a chuckle when I saw what I did: )

I gave for a yr a pint every other week. My ferritan is now 7 and still tired. A yr of being tired. The giving every other week wore me out and I didnt function for 24 hrs after. I dont think the fatigue will EVER go away!

Caseclosed What is your phlebotomy schedule now? I would think the fatigue should go away after being de-ironed, I wonder though if you have adjusted your diet so much for the HH that maybe you are missing out on some other nutrient. I don't know but am just wondering, My fatigue did go away after a year of weekly phlebs.

My gastorolgist didn't test my ferritin levels for over a yr. He had scheduled me for a Phlebotomy once a month after I gave for a year. I became very sick and went to my family doctor and he did alot of test. He found out that my ferritin is way to low and my folic acids were to low. I am now anemic and still tired. My MD states that he should have tested my levels during the year instead of just taking and not checking. The iron is gone but now it is to low and I have to get this back up. There has to be a happy medium but I went from one extreme to the other. When I started my Phlebotomy my ferritin was 1210 and now at 7 and yes I have extreme fatigue. My MD sent my gastrologist the test results and I immediatly received a phone call telling me not to give for 3 months then test again. My MD states I need to go to a blood doctor and we need to get the nutrients back in my system. I am waiting on a blood doctor to call to see if he will take me. The bad part is the nurse stated that she didnt know if he would take me because HH is not well known and he isnt familuar with it enough. I am very frustrated and worried. Thanks for asking Gidget

Four years ago when I was diagnosed I was sent to a hemotologist and he told me that no specialist had taken ownership of this disease. They really didn't know how to characterise it, Most of us here have hemotologist but some do not, I se my regular DR but did see the hemotologist to figure out what my maintenence schedule should be. I like to keep my ferritin around 20 others like theirs around 50. We find that happy medium thats feels best to us. I hope you can find yours soon so that you will feel better.

Thanks gidget for your response. I have given blood for a yr and do not recall ever feeling like I had any energy. I should hear back from the hemotogoist on monday and I am hoping that I should see some results. Thanks again

CaseClosed, I was just nwondering if you heard from your Dr yet and if so what did He?she have to say?

Yes I did! He will take me as a new patient :) He has requested all my records and I will go see him on the 23rd of april. I was impressed when the nurse told me to allow for 1 1/2 hrs for the visit. I have never had a doctor spend more then 15 min in a doctor office with me. I am very excited at the possiblity that I can get a doctor that cares. This doctor was recommended by a friend. She told me that his bedside manner is awesome! So maybe I will get to feeling normal again. Phylobotomys do not bother me...I just want to have energy and become more alive like I remember being :) Thanks again for caring!

Caseclosed thats great news, Finding a good Dr is hard sometimes Please keep us informed of your progress.