Dear Jen,

When I was pregnant three years ago, my factor levels were checked for the first time at 91%. I just had my factor levels checked again, and they are now at 62%. Have your levels varied this wildly? When did you schedule your own appointment with a hematologist?

Signed,

Wildly Frustrated

Dear Wild,

I hear you - my factor levels have more ups and downs than a roller coaster!

As a woman diagnosed with mild hemophilia B, also known as factor 9 deficiency, I've encountered fluctuations in my factor 9 levels throughout my life. The normal range for factor IX clotting activity is typically 50%- 150%. My documented factor 9 levels have fluctuated from as low as 32 to as high as 70. On one occasion, after an infusion of Benefix (factor 9), my level rose to 79. This was after major surgery; the target was 100.

Medical literature often states that factor 9 levels do not fluctuate, but I've personally met several women and men whose levels routinely fluctuate. Most of these people have not had severe hemophilia.

In addition to hemophilia B, I also have von Willebrand disease (VWD), where fluctuating factor 8 and VWD levels are expected. Hormones, pregnancy, and stress are known to influence von Willebrand factor and factor 8 levels, making VWD diagnosis sometimes elusive. My documented factor 8 levels have ranged from the 20s to 93. Once after factor infusion, they even soared to over 300!

Clearly, there's still much to learn about women and factor levels. My most severe bleeding problems occurred when both my factor 8 and 9 levels were presumably low simultaneously. This is just speculation, but my lowest documented factor 8 level coincided with a bleeding episode during a stress-free vacation.

If you're experiencing symptoms or hemophilia runs in your family, I recommend scheduling an appointment with a hematologist at a federally funded Hemophilia Treatment Center. If there are documented cases of hemophilia in your family and you're experiencing bleeding symptoms, it's crucial to consult a hematologist who knows your family history.

It's important to recognize that it's possible to have more than one bleeding disorder or a different one than hemophilia B. For the majority of my life, my menstrual bleeding was treated solely with medication for VWD, despite my insistence that the treatment wasn't effective for me. The persistence of anemia and iron deficiency confirmed that my concerns were valid.

Interestingly, the CDC is sponsoring a webinar tomorrow (May 16th) on Understanding Factor Levels and Bleeding in Hemophilia Genotype-Positive Females. Hopefully, the recording will be made available, and if so, we will update this page.

Stay wild, and I hope you have answers soon.

Jen

About Jen

Jennifer is an entrepreneur whose passion for digital marketing and technology is matched only by her profound connection to the bleeding disorder community. Diagnosed with hemophilia B and Von Willebrand’s disease at a young age, Jennifer’s journey fuels her passion for advocacy and awareness.

A University of Wisconsin, Madison graduate, Jennifer holds a dual BA in marketing and journalism. Originally from Brookfield, Wisconsin, Jennifer now enjoys the sunny ambiance of Punta Gorda, Florida. Through her advocacy efforts, she aims to amplify the voices of those affected by hemophilia and other bleeding disorders, with a special emphasis on empowering women. Her column, Ask Jen, reflects her unwavering dedication to making a meaningful impact in the lives of others.