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- Mon Jan 05, 2009 1:39 pm
Hi. I am a 39 year old female and I have a history of hemorrhaging. I have hemorrhaged 3 times in the last 8 years. Once was after a DNC (miscarriage), once was during a C-Section and the last time the bleeding started a few hours after a minor fatty deposit was removed from my back (I narrowly avoided a blood transfusion during the last two episodes). My primary doctor referred me to a hematologist who informed me that my Von Willebrand Factor was low (53% and 54% respectively) though the Factor VIII Activity and vWF Activity were normal. I was informed that I had a mild, acquired Von Willebrand factor deficiency and was given a prescription for a nasal spray in case I ever had another problem (apparently the tests showed that this is not a genetic form of Von Willebrands).
However, during the first set of labs, it also came back that my Collagen/ADP was high (H110) and my Collagen Epinephrine was also high (H165), possibly indicating a platelet dysfunction. My hematologist asked me to refrain from taking any Advil or antihistamines for the next week and then reran the tests. The Collagen Epinephrine went down 9 points to 156. However, since this was within the normal range (82-159), the lab did not rerun the collagen ADP. I was informed that everything was normal and that I don't have a platelet dysfunction.
My concern is that the Collagen Epinephrine is still at the very high end of normal and that I might have a platelet dysfunction that could be aggravating the Von Willebrands disease. If this is the case, I am worried that the prescription I was given might not be sufficient to prevent another episode of hemorrhaging. The last episode of bleeding was very scary (for myself and, I also believe, for the surgeon) and I'm finding it hard to believe that this is a "mild" case of Von Willebrands disease. I'm wondering if I should consider getting a second opinion from another hematologist. Any advice that could be given would be appreciated.
| John Kenyon, CNA
- Tue Jan 06, 2009 11:29 pm
Hi there -
Thanks for the really well-researched and complete post. You're obviously conversant in the area of platelet dysfunction and I think you're right to want a more complete study done, for the reasons you've outlined here. It seems the diagnsis was based on something less than complete evidence, and while the chances are good this is an acquired problem, "a good chance" isn't good enough; not for you, clearly, and not for a conscientious clinician. It certainly doesn't satisfy me or I'd tell you so.
I would definitely seek a second opinion on this one. While the first doctor may well wind up being correct, there's not enough evidence to support that based on the evidence alone. When a problem is potentially serious there's no room for guesswork. I would by all means seek a consult.
I hope this is helpful to you. Good luck to you and please follow up with us as needed.