Acquired Von Willebrand
Hi! 38F in Canada.
I was diagnosed with ET a few months ago. My platelets have been around 1200-1400 since April 2026. We suspect I've had it for many years.
I'm CALR type 1, no prior thrombosis event, so very low risk.
However, we did von Willebrand testing before starting aspirin like my hematologist wanted to.
First test in April, antigen 0.78, activity 0.44. Second test in June, 0.75 and 0.45.
She calls those results "borderline", and because I have no bleeding symptoms, my hematologist told me not to take aspirin, and sent for a VW multimer test. It's been 2 months and a half and the lab told her it could still take months to get my results.
When I called today, the nurse (after talking to my hematologist) told me not to worry as it wouldn't change my treatment anyway if I had aVW (which is not what I remember from a prior appointment...).
Anyone on watch and wait with platelets over 1000 and aVW?
I know she consulted von Willebrand specialists and one told her to treat with interferon and the other said that it wasn't necessary...
I might need to be more forceful about treatment anyway because my erythromelalgia is getting more and more painful...