Dear PerthMom,
Just a little frustrating???? Not really confident in the GP advice? See if the GP can't get in contact with a Hematologist at a major hospital to answer your questions. All the vWD blood tests should be available in Perth. If not, the samples can be shipped frozen in dry ice to a major lab. There are at least four iron tests, ferritin level, TIBC , serum iron and iron saturation. The range of values can normally vary over as much as a two to one or three to one ratio so you can expect the values to change from test to test. I have difficulty absorbing iron from food so I get iron infusions every few months. If I am bleeding out they give me iron so I can make new Hemoglobin to build up the Hgb count in the CBC. The RDW and MCV numbers will change if you have lost some blood and are in the process of making new blood. Since bleeding can occur in the GI tract you should be aware of the color of stool. Dark to black stool indicates, usually, an upper GI bleed. Visible red blood is likely to be in the colon or rectal area, in general. I actually purchased Hemoccult test strips online and keep them in the Bathroom. It's an easy test to perform and interpret.
I would definitely read the aspirin side-effects literature very carefully. If you really have significant vWD then you are unlikely to suffer from blood clots. On the other hand if you have clogged arteries then you are in a hard place so question the Doctor carefully about the risk analysis factors. What would he or she do in your situation??? You have a very legitimate concern. Also note that anti-depressants like SSRI and SNRI typically have anti-coagulant side-effects. Buproprion (Wellbutryn) acts differently and does not have a tendency to increase bleeding incidents as far as I have been able to find. There are also herbal supplements which increase bleeding incidents.
If you have vWD test for vonWillebrand Factor which is low, then Factor VIII will also probably be low as the VWF molecules wrap around the Factor VIII molecules and protect them from other blood chemicals. To tell what type of vWD you have you need more tests, such as a "blood smear" or "multimere" test and Ristocetin Cofactor. An APTT and PT test check the coagulation time for your blood. APTT relates to Factor VIII levels and PT relates to Factor IX. My APTT typically runs from the high thirties to fifty or more. the top of the normal (reference range) is about 30. At 38 I can bleed out. My PT is normal. Hemophilia A is lack of Factor VIII and Hemophilia B is related to Factor IX. My VWF numbers are so low that I should be treated as a Hemophilia A patient. My multimere test shows that I don't have large VWF multimeres needed to protect the Factor VIII. My blood has anti-bodies which apparently eat the large multimeres for lunch as fast as my bone marrow produces them. That is why Stimate doesn't do a lot for me.
For many people, Stimate nasal spray is a real life-saver. It only takes about an hour to cause the release of VWF from cells that store the VWF. If you do check into the hospital for a bleeding incident, they are likely to give you an IV infusion of "desmopressin" which is the secret ingredient of Stimate. There is a simple test procedure to check whether or not Stimate will work in your case but it won't probably be done unless you are in the hospital. They take a blood sample to test for VWF, Rist.Cof. and FVIII, give you the IV desmopressin and two hours later take another sample for the VW tests. In my case I went from less than 5% to less than 20%. Enough to stop a mouth bleed or nosebleed, maybe, but not enough to stop a GI bleed or serious bleeding incident. You will probably have better results. I hope!
I wear a medical alert bracelet that says BLEEDING DISORDER and info about VWD. I also have a good collection of bandage making material I take with me in the car and the kayak. I usually carry the Stimate with me also.
You may run across reference to AMICAR or aminocaproic acid as a bleeding stopper. This material works for mouth bleeds where the saliva tends to break down the "fibrin" that makes up a blood clot. It is not applicable to all bleeds, like GI bleeds but is often used prior to dental work.
So if you read this far, you know I have had a few bleeding episodes and a lot of testing done. I have found that having written questions for the doctor, one copy for you and one copy for the doc really help to focus the discussion on what you need to know for your peace of mind. I always try to have my wife or daughter with me for important consultations, like now I am trying to avoid a prostate biopsy procedure that might be more dangerous than a slow-growing prostate cancer. So good luck and keep posting your questions and concerns!!! You are not alone.
Hoping this helps you formulate your questions for the doc,
John the elder
Sorry to hear what you are dealing with at this time. Unfortunately, from my experience anyways, even when all the doctors know about the VWD diagnosis there is still a lot of confusion and miscommunication between them. Just this morning I had to go for an endoscopy which my Gastrologist normally does in her office clinic but last minute she moved it to the hospital out patient surgery centre because of the DDAVP infusion. I specifically questioned her that my VWD would probably needed to be treated at a hospital and not a clinic but she had said it was no problem. Well, apparently it turned out to be a problem, as I had expected my hematologist would say it would. So, I can’t imagine your level of frustration.