29/04/2026
This is so relatable!
IRON.
The thing nobody tested.
The thing nobody mentioned.
The thing that explained everything.
If you are a woman or girl with a bleeding disorder, read this.
Heavy periods are not just inconvenient.
They are blood loss.
Month after month.
Year after year.
And blood loss means iron loss.
Up to 80% of women and girls with bleeding disorders experience heavy menstrual bleeding.
Only about 4% are ever screened for iron deficiency at their HTC.
Of the ones who are screened, 72% are iron deficient.
Read that again.
Iron deficiency doesn’t always show up as anemia on a basic blood test.
You can have low iron and a normal hemoglobin.
You can be exhausted and be told you’re fine.
Here is what low iron actually feels like:
* Bone-deep fatigue that sleep doesn’t fix.
* Brain fog. Forgetting words mid-sentence.
* Hair falling out in the shower.
* Cold hands. Cold feet.
* Restless legs at night.
* Shortness of breath climbing stairs.
* Heart racing for no reason.
* Cravings for ice. For dirt. For starch.
* Anxiety that came out of nowhere.
For years, women in our community have been told this is stress.
Just being a mom.
Just being busy.
Just getting older.
It might be iron.
The test that catches it is called ferritin.
It measures stored iron.
It is not part of a standard CBC.
You have to ask for it.
And here is something our community needs to know.
In March 2026, the National Bleeding Disorders Foundation released new clinical practice recommendations specifically for our population. For people with inherited bleeding disorders, the threshold for iron deficiency is ferritin under 50 ng/mL. That is higher than the general population threshold of 30.
Translation: a ferritin level your doctor calls “normal” may not be normal for you.
If your ferritin is low, there are options.
Iron-rich nutrition. Oral iron. IV iron infusions for those who need them. Treatment for the heavy bleeding itself.
You are not lazy.
You are not weak.
You are not making it up.
You may just be running on empty, and nobody thought to check the tank.
~ Hemophilia Foundation of Maryland
A note from HFM:
We are not medical professionals. This post is informational only. Always talk to your medical providers and your HTC before making decisions about your care.
Sources:
• Batsuli G, et al. “National Bleeding Disorder Foundation Clinical Practice Recommendations for Laboratory Screening of Iron Deficiency With and Without Anemia in the Inherited Bleeding Disorders Population.” Haemophilia, March 2026.
• McCormick M, et al. “The iron ladies: prevalence and risk factors of iron deficiency in females with bleeding disorders.” Haemophilia, March 2025.
• American Society of Hematology Clinical News, “Iron Deficiency Potentially Underdiagnosed in Females With Bleeding Disorders,” July 2025.
• Hemophilia Federation of America, “Iron Deficiency in Women and Girls with Bleeding Disorders: What You Need to Know.”
• Yale Medicine, “Are You Iron Deficient? 8 Things Women Should Know.”
• Pediatrics Nationwide / Nationwide Children’s Hospital, “Iron Deficiency and Fatigue Among Adolescents With Heavy Menstrual Bleeding.“
