By Magdalena Lewandowska, MD, Adult Hematologist
Innovative Hematology and the Indiana Hemophilia & Thrombosis Center
People living with inherited bleeding disorders face a significantly increased risk of iron deficiency, a condition where the body lacks sufficient iron to produce healthy red blood cells. Iron deficiency can exist even when anemia is not yet present.
For many years, iron deficiency in this population has frequently gone unrecognized or untreated. Ongoing or repeated blood loss like nosebleeds, heavy menstrual bleeding, gastrointestinal bleeding, or bleeding related to pregnancy and childbirth can gradually deplete iron stores. Because traditional lab thresholds are not designed with chronic bleeding in mind, many people have been diagnosed only after anemia had already developed. The result has been unnecessary worsening of symptoms, reduced quality of life, and missed opportunities to intervene earlier.
Why iron deficiency has been overlooked
Several long standing practices contributed to delayed diagnosis:
- Laboratory ferritin reference ranges were set too low, often as low as 10–15 ng/mL, based on outdated standards instead of iron physiology.
- Testing focused on detecting advanced iron deficiency rather than identifying early depletion.
- Hemoglobin levels were often used alone to screen for iron problems, even though iron deficiency can cause significant symptoms before anemia appears.
Recognizing these gaps, the National Bleeding Disorders Foundation (NBDF) Medical and Scientific Advisory Council (MASAC) issued updated recommendations to guide earlier detection and treatment of iron deficiency in people with inherited bleeding disorders.
Why iron is essential
Iron plays a critical role throughout the body. Adequate iron supports:
- Energy and physical endurance
- Brain health, including concentration, memory, and mood
- Normal growth and development in children
- Healthy pregnancy outcomes and postpartum recovery
When iron levels drop, people may experience a range of symptoms, including:
- Persistent fatigue or weakness
- Lightheadedness or shortness of breath
- Headaches or rapid heartbeat
- Difficulty focusing or thinking clearly
- Hair thinning or fragile nails
- Cravings for ice or non food items (pica)
These symptoms may develop well before anemia is detected on standard blood tests.
Increased risk in inherited bleeding disorders
Conditions such as hemophilia, von Willebrand disease, platelet function disorders, and carrier states are associated with ongoing, sometimes subtle blood loss. Common sources include:
- Heavy or prolonged menstrual bleeding
- Frequent nosebleeds or oral bleeding
- Bleeding in the gastrointestinal tract
- Blood loss related to surgery or childbirth
- Over time, these losses can steadily drain iron reserves without obvious warning signs unless testing is performed regularly.
The importance of routine screening
MASAC recommends that all people with inherited bleeding disorders (regardless of age or sex) be evaluated for iron deficiency and anemia at least once a year.
More frequent testing is advised for individuals who:
- Have heavy menstrual bleeding
- Have experienced recent bleeding episodes, surgery, or hospitalization
- Are pregnant or recently gave birth
- Have symptoms such as fatigue, dizziness, or shortness of breath
- Have a history of iron deficiency
- Have gastrointestinal conditions that impair iron absorption
Special considerations during pregnancy
Iron deficiency during pregnancy can negatively affect both the parent and the developing baby. For people with bleeding disorders who are pregnant or planning pregnancy, iron testing should occur:
- Prior to conception, when possible
- Early in pregnancy (first trimester)
- Again later in pregnancy (second or third trimester)
- After delivery, with repeat testing 6–12 weeks postpartum
This approach supports healthier outcomes during pregnancy and recovery after birth.
Updated thresholds: what defines deficiency now?
Because people with inherited bleeding disorders lose blood more frequently than the general population, higher diagnostic thresholds are recommended.
According to MASAC guidelines:
- Anemia is defined as a hemoglobin level below 13 g/dL for both men and women.
- Iron deficiency is diagnosed when ferritin levels fall below 50 ng/mL, regardless of sex.
Many laboratory reports still flag much lower ferritin levels as “normal,” which can delay appropriate care.
Early treatment makes a difference
Iron deficiency should be treated as soon as it is identified, even if anemia has not yet developed. Research shows that correcting iron deficiency can:
- Improve energy and reduce fatigue
- Enhance mood and cognitive function
- Improve overall well being and daily functioning
Treatment options may include oral iron supplements taken daily or every other day. Intravenous (IV) iron may be recommended when oral iron is ineffective, symptoms are severe, iron needs to be replenished quickly, or during later stages of pregnancy.
Looking beyond iron replacement
Restoring iron levels is only part of the solution. Long term management requires addressing the underlying cause of iron loss. This may involve:
- Treating heavy menstrual bleeding or other chronic bleeding sources
- Reviewing medications that interfere with iron absorption
- Optimizing diet to support iron intake
- Using bleeding control therapies to prevent recurrence
- A comprehensive approach helps ensure that iron deficiency does not return
Magdalena Lewandowska, MD, CACP is an adult hematologist and associate medical director at Innovative Hematology, home of the Indiana Hemophilia & Thrombosis Center (IHTC). Her work includes clinical care, research, and medical education, with a focus on hemophilia, rare bleeding disorders, thrombosis, and women’s health. She is co-director of the GO (Girls and Women Only) Clinic at IHTC and serves on the Medical and Scientific Advisory Council (MASAC) of the National Bleeding Disorders Foundation, contributing to national treatment recommendations and clinical guidance for the bleeding disorders community.
