Von Wilebrands

[heiseygirl]

I have Von Wilebrands. This was found out during 1 of my hospital visits when I first got sick with what we now know is pots. It is a hereditary bleeding disorder which ironically no one in my family has. I have had it all my life as I have severe bleeding problems my whole life which were not diagnosed till about 2004. The interesting thing is that I get ivs of ddavp when ever i have any surgieries or invasive procedures done. I see that alot of you use ddavp as a med. is there a connection?

[firewatcher]

I and others are on dDAVP for blood volume expansion/frequent urination. I do not have any blood coagulation disorders that I know of, but did have hypothyroidism (as mentioned on wiki.) Yours may be autoimmune (also on wiki) and not hereditary unless they've typed you other than type I. I have not seen any research that would connect the two disorders. The only studies I have seen have been idiopathic hypovolemia (total low blood volume) with POTS, but no clotting disorders.

[tinkerbella]

I was given the dx years ago but insurance would pay for the full testing. I had all the years of classic symptoms and always bleed forever. At one time the dr. gave me meds to carry to take the was afraid I'd be allergic. He said the testing can take years to catch in blood work. I was studied for about 9 months and was very sick, they thought I had lymphoma or some auto immune disease. Mt doc moved and I was left with a new doc at the Cancer center who dropped my case. He said don't take any blood thinners or I'll be in trouble.

I did nearly die from an ectopic preg. on the table from loss of blood. I have many stories like that.

Good luck to you.

BellaMia~