Have not been diagnosed

I have all of the symptoms but no diagnosis. This has been going on for a few years now. Severe nose bleeds, excessive bleeding during surgery and dental appointments. Hysterectomy due to bleeding.I always have bandaids on my arms and bruising.

Three hemotologists in my area thought I had VWD but after testing said no. Is it possible to have it but test negative?

Hi Tyrasmom!

Hi tyrasmom!


Google vWD blood tests. There are some issues with testing. There are a number of blood protein/nutritional supplement/prescription drug interferences which can induce bleeding symptoms. Besides the obvious ones like aspirin/nsaid issues, other drugs like coumadin and almost all anti-depressants cause changes in the blood's ability to clot by binding to specific blood proteins like vWF and serotonin. Doctors, even hematologists, are not always quick to see the connection as Drug sales information touts the "less cardiac problems" with prescribing SSRI and SNRI while downplaying the increased bleeding which they always associate with use of nsaids and coumadin. St. John's wort and other homeopathic supplements also affect blood clotting. Carefully go over your diet and spend some time on google. You only have to learn a little " Doctor Jargon" to find out what they are trying to say.

John the elder

Hello!!

I have had issues with being diagnoses for almost 4 years now. I have a normal vWF count, but my factor VIII is so low, like a hemophiliac. Because I am a girl however, they didn't want to give me that diagnosis. I now have the VWD diagnosis, but I was okay without a diagnosis because I was getting the proper meds to help with the daily bleeding and bruising. Hopefully, you are getting help with your day to day struggles.


Sarah Elaine

There are several things that could give you a false negative. I had my first test come up negative b/c I had a sinus infection. Stress can also give a false negative. I would just keep demanding an answer.

I have demanded answers. I am so frustrated and I think maybe I should see someone at one one of the NYC hospitals. Everytime I get a nose bleed or a nother large bloody bruise on my arm I get so upset. My sons wedding was in August and for the last month I was wearing long sleeves in the summer to prevent the marks on my arms for the wedding.

Yes. you need to insist the next test is on the first day of your period. x

Sounds unusual, but quite possible to have false negatives. Labs are not 100% accurate and medications can sometimes alter the results. Bleeding problems are nothing to mess around with. If I went to three hematolgists and still no definite diagnosis then I might want to contact the National Hemophilia foundation in my state and tell them the story and let them direct you properly, here's their link. I don't know which state you live in.

http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=51&contentid=193&rptname=chapters

Good luck,

Allergic