Treating iron deficiency in women with hemophilia

The condition is a significant health issue that deserves attention

Jennifer Lynne avatar

by Jennifer Lynne |

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Iron deficiency has been a hot topic at the online hemophilia summits I’ve attended recently, and it’s encouraging to see this important issue being addressed.

Hemophilia doesn’t directly cause iron deficiency, but heavy menstrual bleeding can lead to iron loss. Women with hemophilia who experience heavy menstrual bleeding are at an increased risk of developing iron deficiency and anemia compared with men who have hemophilia.

In my younger menstruating years, I was consistently iron deficient and often anemic. At the time, I accepted it as something I just had to live with. My anemia was brushed off as inconsequential and expected.

The iron pills prescribed by my hematologist back then did little to help. I often felt terrible, but didn’t realize that my sluggishness was because of a low iron level. I was tested for autoimmune disorders and other problems, but none of them explained my symptoms. It wasn’t until I finally had a series of iron infusions at the age of 54 that my iron level improved.

Knowing what I know now, I should have pushed for better treatment of my bleeding disorders.

In a presentation titled “Iron Deficiency: A Metric for Therapy Success,” delivered during Hope for Hemophilia’s Prophy Conference last week, hematologist Claudio Sandoval described iron deficiency as a “terrible disease” because iron is critical for the body.

He emphasized that if a woman with a bleeding disorder remains iron deficient despite treatment, she’s not getting the most from her therapy. This situation certainly applied to me in the past. I used Stimate (desmopressin acetate) and hormonal therapy for my von Willebrand disease during my periods, but they didn’t help my heavy bleeding or iron deficiency. I now realize that I also probably needed treatment for my low factor IX (hemophilia B), which wasn’t an option for women at the time.

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Why are ferritin levels important?

Sandoval explained that chronic blood loss from heavy menstrual periods and gastrointestinal bleeding are well-known causes of iron deficiency. This condition occurs when the body lacks sufficient iron to produce hemoglobin, the substance in red blood cells that enables them to carry oxygen. This deficiency can lead to various health issues, ranging from fatigue to more severe conditions like iron deficiency anemia.

Ferritin, a blood protein that stores iron in the body, is a key indicator of iron levels. The reference value in a lab for women with low ferritin is usually around 16 ng/mL, but Sandoval noted that a level below 50 ng/mL is definitive for iron deficiency.


Sandoval recommended that women with bleeding disorders have their ferritin level checked at least once a year. Fortunately, my hematologist has implemented a standing lab order for my ferritin to be checked every three months. I usually don’t check it that often, but after listening to Sandoval, I went to the lab the next day. My ferritin level is 60 ng/mL, which is above the reference point of 50 ng/mL.

However, my ferritin level has slowly decreased over the years, following my iron infusions. I plan to have it checked again in six months.

Iron deficiency is not just a minor inconvenience; it’s a significant health issue that deserves attention and proper management. Reflecting on my experiences, it becomes clear that advocating for comprehensive care and treatment for women with bleeding disorders is crucial. Regular monitoring and proactive management of iron levels are key to preventing the debilitating effects of iron deficiency. I hope that sharing my story and insights from experts like Sandoval will encourage others to seek appropriate treatment.

Have you experienced iron deficiency? What stands out about your experiences? Please share in the comments below.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.


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