Treating iron deficiency in women with hemophilia

Heavy periods & your health

Iron doesn't
come backon its own.

If you bleed heavily every month, you are losing iron every month. Here is what to test, what number to ask for, and what to do when "your labs look fine" doesn't match how you feel.

The number to ask for is ferritin

Ferritin is the protein that stores iron in your body. It drops long before hemoglobin does — which is why you can be exhausted and still be told you aren't anemic.

<16Many labs only flag "low" down here

<50Widely used threshold for iron deficiency in people who bleed

50+Stores holding — recheck to confirm the trend

Why the gap matters: a ferritin of 22 can print as "normal" on your results page and still leave you dragging. Ask for the actual number, not just whether it was flagged. Then ask your provider what target is right for you.

Hemophilia doesn't cause iron deficiency. Heavy bleeding does.

A bleeding disorder doesn't drain iron by itself — the blood loss does. For women and girls, the biggest and most repeated source of that loss is menstruation, month after month, for decades.

That's why women with hemophilia, von Willebrand disease, platelet disorders, and rare factor deficiencies run low on iron far more often than men with the same diagnoses. It's also why iron status is a fair way to judge whether treatment is actually working. If your bleeding is being managed well, your iron should be able to recover. If your ferritin keeps falling, that's information about your treatment plan, not just your diet.

What low iron actually feels like

These get explained away as stress, poor sleep, or "just being busy." Together, they're worth a lab slip.

Bone-deep fatigueNot sleepiness — a flat battery that rest doesn't fix.

Breathless on stairsEveryday effort suddenly costs more than it should.

Racing or pounding heartYour heart working harder to move less oxygen.

Ringing ears, headaches, dizzinessEspecially when standing up quickly.

Brain fogLosing words, rereading the same paragraph.

Hair shedding, brittle nails, ice cravingsCraving ice or non-food items is a classic iron sign.

Take these to your appointment ”

• Can we check my ferritin, not just a CBC?
• What was my actual ferritin number, and what target should I aim for?
• How often should this be rechecked — could we set a standing lab order?
• If oral iron hasn't worked or I can't tolerate it, am I a candidate for IV iron?
• Is my iron staying low because my bleeding disorder treatment needs adjusting?

Ways iron gets replaced

Your hematologist decides what fits your situation. Knowing the options makes the conversation easier.

FoodSupportive

Red meat, liver, shellfish, beans, lentils, and fortified grains help maintain iron. Pair plant sources with vitamin C. Diet alone rarely refills stores that heavy bleeding has emptied.

Oral ironFirst line

Tablets or liquid, often taken every other day for better absorption. Nausea and constipation are common reasons people quit — tell your provider rather than stopping quietly.

IV iron infusionWhen oral isn't enough

Iron delivered directly into the bloodstream, usually over one or a few visits. Often used when levels stay low despite pills, when side effects are intolerable, or when stores are severely depleted.

Controlling the bleedingThe root cause

Hormonal options, tranexamic acid, desmopressin, or factor treatment can reduce monthly blood loss. Replacing iron without slowing the loss is filling a bucket with a hole in it.

From our founder's column

"Treating iron deficiency in women with hemophilia"

Jennifer writes about years of being told her anemia was expected and inconsequential, the iron pills that never moved the needle, and the infusions at 54 that finally did — plus what a hematologist's talk on ferritin changed about how she tracks her own labs.

By Jennifer DeGlopper · Published by Hemophilia News Today

Read the full column at Hemophilia News Today →

You're not alone.You're not overreacting.We believe you.

Girls Bleed Too provides educational resources and community support. This information is not a substitute for medical advice. Always consult a qualified healthcare provider about diagnosis, treatment, and care decisions.