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Von Willebrand Disease (VWD) - Online Support Group

Does von willbrands disease fluctuate or change?

Hello, my name is Carrie. I am new to this site and am in search of answers. Everytime I go to a hematologist I get, “ugh you were misdiaganosed.” I am losing trust in these doctors. I was diagnosed at a children’s hospital when I was 7 for type 1 vwd. I got a new hematologist when I was 21 and he had diagnosed me with type 2n. I asked him how come it has changed? He told me, I was misdiaganosed. At that time I had normal VW factor and low factor 8. Two years later, with a new doctor, I am again told " you were misdiagnosed." Your von willbrand and factor 8 are very normal. Just today I woke up with petechia, I still receive heavy menstrual and bad bruising. I need my wisdom tooth removed because it is infected and causing problems. I was told that I can have it removed by my general dentist, but just a few years ago for the same procedure I had to be administered factor 8 and with a surgeon. Now I don’t need anything and she said she will not check my platelet levels until after I get my tooth removed. I am starting to not believe a thing these hematologist say. Has anyone else expirenced this and if so what did you do? Any advice for me, please?

hi Carrie! I have type 2M, my experience has been that my factor levels do fluctuate, I think they do in people without VWD as well. your blood changes as you fight illnesses, and my levels changed a ton while I was pregnant (which is normal). I was misdiagnosed too when I was young and only got my correct diagnosis after extensive genetic testing. from my understanding of that and how my type of VWD works, that’s really the best way to determine your type. I know with 2M i have normal factor levels, but the factor doesn’t work right. I had my wisdom teeth out in 2 parts, my uppers while I was sedated having another dental procedure l, and my lowers just with local anesthetic. I received human blood plasma with the first set because of the accompanying surgery, but didn’t with the second set. both procedures were with the same dentist and hematologist. I hope that helps! every person and type is different, and it’s super important to trust your doctors! you can always switch, or let them know you don’t feel confident in the treatment you’re getting. they will help you understand your diagnosis. doctors often forget that their patients aren’t scientists, and VWD is actually kinda complicated. a good hematologist will explain it to you so you understand and feel safe in their care!

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Thank you so much,
I have no family history that we know of with VWD. And many of my family members don’t care to get tested. All that i know is that sense I was 7 to 21years old I had von willbrands disease. And now I am being told something different after two other hematologist diagnosed me with VWD. I am in disbelief because vwd was the reason for all my problems. And now I don’t know what is wrong. I am scared to proceed with the extraction, because I don’t trust my new hematologist and unfortunately where I live, there isn’t another one. I am hoping everything goes okay with the extraction. When I was little, my mom’s friend pulled a loose tooth out of me and the sink was full of blood. They struggled to get me to stop bleeding. I know they will have tools and be more qualified to pull a tooth, unlike my mom’s crazy friend. Lol, But thank you for letting me know, it is difficult to diagnose. I hope soon I can figure out what is wrong, if it isn’t vwd.

When I was re-diagnosed, my hematologist told me that since I was definitely a 2M based on the genetic testing, everyone in my family who had VWD was 2M too. I think you can acquire type 3 if no one in your family has it (I’m not a dr, obviously, don’t quote me, this is all just based on my experience, conversations I’ve had with doctors and my own research), and I know that 2N is inherited recessively, so it’s possible no one else or very few other people in your family have it. This is a good resource for understanding dominant vs recessive inheritance, you might have learned about it in high school.
Anyway, it’s too bad that no one else in your family is interested in getting tested because it’s been really helpful in my family that we all see different hematologists. Our doctors talk to each other and we can compare our experiences. That said, if i didnt know I had VWD, i dont think i would be worried about my bleeding, you know? i bruise really easily, my periods are super heavy (even on the pill, but it helped a lot when i was on it) and if i get a cut i bleed longer than most people, but that’s about the extent to which it affects me, day to day. i can see how a lot of people dont worry or think about VWD on a regular basis. There are no big hospitals around that you could try to get in and see someone in their hematology/oncology dept? Even if it’s far, it might be worth a trip just to get a real and final answer!

You have been so helpful! I will look into a few hospitals and other
hematologist that are somewhat close .Thank you for your time to answer my
question and inform me about this disease that I know little about and
didn’t really have much intention to learn when I was younger. I guess now
that I’m getting older I need to learn more for my future. It is so great
to know there are others out there with this disease. I use to feel all
alone and embarrassed because of my bruises or petechia. Thank you so much!
I am great ful I found this site sense I don’t have anyone who has this
disease.

no problem at all! I’m trying to be active on here because i’ve had a lot of frustrating experiences with VWD and it’s so so hard to find info, whether it’s research or anecdotal. report back about how the tooth extraction goes! and don’t ever be embarrassed, what goes on with your body is no one else’s business! i used to get made fun of for my bruises and cuts, it’s so rude of people! The nerve they have to look you over and say something about it!

Thank you so much for your help. The closest hematologist is an hour away and I’m afraid I’m gonna have to go farther to find a better one. I’m probably gonna stick with her until I get my teeth out then find a new one. If it is true that your infection causes normal vwf levels then I will hopefully be fine. If not I will be close to a hospital. I just believe it is weird and then for her to tell me I have to have my platelets checked but only after I get my teeth out. Don’t hematologist normally check that before any type of surgery? Do you know of any other blood diseases that are just like von willbrands disease? I know you are not a doctor, but maybe someone you know, has something similar or been diagnosed for vwd and it was something different? I’m so sorry for all the questions, I just never talked to anyone with this disease and never had answers. When you were pregnant did you have normal levels? My doctor said my factor 8 was at 85 and that was very normal. But it was low last time I had it all checked.

I’ve always had my levels checked before and after, but with my type of VWD, they need to know my levels to give me the right dose of blood plasma. DDAVP, which is i think what they use on type 1s (and some type 2s?) does not work for my type. my dad had a bleed several years ago when they thought we were type 1s and he lost so much blood he almost died. I’m not saying that to scare you, but just so you know, since you’re not confident in your diagnosis. if, god forbid, anything goes wrong with your extraction and you need to go to the hospital and they’re having trouble stopping the bleeding with one treatment, be aggressive and make them give you something else. dont wait till you need a transfusion or something.
I’m not sure that an infection would affect factor levels specifically, but it can change the overall composition of your blood. when i was pregnant my factor levels were all over the place, but as I got close to delivering my baby, they were better than normal. that said, with type 2M, my problem isn’t the levels, it’s that the factor antigens don’t work right. so sometimes my levels are normal, sometimes they’re low, but always I don’t clot because my factor is broken. hemophilia A is similar to VWD, I think it’s common for people to be incorrectly diagnosed as hemophiliacs when they actually have VWD but I think because of the genetics, it would be less common to be misdiagnosed as having VWD if you actually had hemophilia. hemophilia is x-linked and recessive, so it’s possible for women to have it, but rare. for you to have it, your dad would have to have it and your mom would be a carrier

Thank you so much for your advice and help. My mother passed away a few years ago from an unexpected brain aneurysm and of course they couldn’t get the bleeding to stop. My father has always been out of the picture, so honestly your the only one I have been able to talk to about this! So it really means a lot that you are able to give me advice. And I don’t mean to be negative or anything, with bringing my parents up. I just want you to understand how much this means to me. I will message you back after my surgery in December to let you know everything went good. And hopefully after we can run more test and figure out what is wrong.
Thanks a lot!:slight_smile:

How did the surgery go!? I’m so sorry, i don’t remember seeing this message! –
i think i definitely would have replied! I’m so sorry about your mother, I can’t imagine what that is like. I hope you’re doing well