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.
Anyone here experience iron avidity? If so, how did you find your iron balance?
I copied the article on Iron Avid.
Iron Avidity...Common Phenomenon seen in hemochromatosis patients
"...the paradigm has to shift ...the hemochromatosis patient
can also be the iron deficiency anemia patient ."
Mark Wurster, MD Ohio State University Health Center
Iron avidity is a common problem, especially among hemochromatosis patients. This patient has a normal to low serum ferritin (e.g. 15-40 ng/mL) with elevated transferrin-iron saturation percentage (Tsat%>50%). The normal condition would be a Tsat% within normal range (25-35%) when the iron stores are in this range of ferritin values.
Though there are no data to explain this relationship of iron status markers and HHC, iron avidity may be the body's physiological response to a rapid blood loss (losing too much blood too rapidly by phlebotomy). Compounding the problem, the patient is also consuming a diet low in iron (especially heme) and employing measures to impair the absorption of iron that is consumed, such as drinking tea or coffee with meals, taking supplemental calcium, etc.
According to John Beard, Professor of Nutrition, Penn State University, "With these factors in place and as the iron balance is not fully functional, the various "iron sensors" in the body may be trying to send more iron to bone marrow than is really required."
Beard continues, "It is important to not become iron deficient in the midst of treating HHC as the consequences of overt anemia can be quite unsettling in and of themselves (changes in immune function, cognition, mood, physical endurance, etc.). It is a fine line between too much and too little iron in this kind of individual and diet and bleeding need to be carefully controlled to optimize this balance.
Some patients with hemochromatosis, iron-overload have difficulty grasping the fact that they are at the other end of the iron balance scale and are now deficient in iron. Unfortunately, some physicians also can miss the obvious and continue to try to lower tissue iron levels using Tsat% alone, when what might help is to treat the patient for iron deficiency anemia.
Dr. Susan Leitman, Principal Investigator of the Hemochromatosis Management Protocol at the NIH Department of Transfusion Medicine, Bethesda, M D says "Treating physicians should not be cavalier about phlebotomy therapy in HHC patients. It is very easy to forget that careful, judicious monitoring must accompany all courses of phlebotomy therapy. Among previously treated patients referred to our protocol, we see about the same number that are "overbled" as those that are "underbled." It is easy to become profoundly iron deficient, with symptomatic fatigue, even exhaustion, if iron stores are totally depleted, and iron deficiency anemia develops.
In the protocol, HHC patients are deironed carefully and are not overbled to the state of becoming iron deficient. Tests such as the complete blood count and iron panel are used to monitor the progress of patients in the program. One marker that is helpful is the mean corpuscular volume (MCV). The MCV drops slightly (about 3%), when the patient's body iron has reached a healthier balance. The MCV is inexpensive and part of the CBC.
Mark Wurster, MD, Ohio State University says that "It is a given that iron is important for many biochemical processes. But there are no data with compelling enough evidence to support there is any benefit to the hemochromatosis patient to suffer iron deficiency anemia ."
Wurster, Leitman, Beard and Weinberg all agree that iron avid patients should be counseled that they are at increased risk for certain infections. Weinberg writes in his latest book, Exposing the Hidden Dangers of Iron, that in normal persons, the transferrin iron saturation percentage is 25-35%. In untreated hemochromatosis (HHC), it can rise to 100%.
In one study,none of eight strains of V. vulnificus could grow in the presence of transferrin with 30% saturation; nearly all could grow with transferrin at 100% saturation. In normal mice, an injection of one million bacterial cells of V. vulnificus was needed to cause a lethal infection. In mice injected with iron, only one injected bacterial cell resulted in death!
Below is one approach for the iron avid
patient to achieve iron balance.
CONSIDERATIONS FOR THE IRON
AVID PATIENT:
AVOID exposure to bacteria (see list).
DISCONTINUE phlebotomies for a brief period of time, 3-4 weeks.
DIET: Eat to replenish iron stores
MONITOR: serum ferritin and Tsat% during these intervals
WAIT to perform a phlebotomy until serum ferritin reaches at least
55ng/mL
Serum ferritin drops about 30ng/mL with each full unit of blood removed. Allowing the serum ferritin to rise sufficiently to remain at or above 25ng/mL post phlebotomy, should allow the body to reach iron balance: Tsat% 25-35% with serum ferritin within 25-75ng/mL. The greatest obstacle to this approach of restoring iron balance is the patient's concern for allowing serum ferritin to rise. Many HHC patients and some physicians still believe that de-ironing is only achieved when ferritin is lowered to less than 10ng/mL. There is no known benefit to lowering serum ferritin below 10ng/mL or even possibly below 20ng/mL when known symptoms of iron deficiency anemia can occur.
What a nice Christmas gift..... no weekly phlebs!!!!!!!
zzzzzzzzzz
JMHO