Hematologist dropped me- VWD Type 1
Hi everyone 👋. For background, I was diagnosed with VWD Type 1 around age 16. I’m in my early 30’s now. Growing up I had horrendous menstrual cycles that I learned were not normal. I had not had any surgeries or major bleeding events prior to the time of my diagnosis so menstrual cycle was the only obvious indicator. My OBGYN at the time referred me to a fantastic hematologist. After running panels, she diagnosed me with VWD Type 1, and I saw my hematologist yearly (she refilled my stimate nasal spray that I would use during menstrual cycles). My diagnosis remained the same. I also received DDAVP prior to wisdom tooth extraction.
Fast forward to 2018- I accepted a job out of state, got very busy, menstrual cycles improved a bit, and so I never took the time to get set up with a good hematologist. Then COVID hit- further delaying seeing a hematologist. In 2022 I found out that I needed to have a hernia repair, so I reached out to hematologist to have a my levels checked and to come up with a plan for surgery. Levels were in the low normal range so the hematologist said I didn’t need anything and cut me loose with no plan for surgery. My surgeon almost canceled my surgery over this. The anesthesiologist insisted on doing DDAVP despite the hematologists feedback and refusal to sign a clearance letter for me but wouldn’t advise on a plan. The hematologist didn’t advise coming back.
Prior to becoming pregnant in 2024 I had my levels checked again with a new hematologist. The levels were again, low normal. This hematologist told me I didn’t need to take any additional precaution during pregnancy and I could see a typical OBGYN (not high risk). I did end up getting pregnant and following the birth of my daughter I had a lot of bleeding and some of the worst menstrual cycles of my life. I called back into the hematologists office just last week trying to explain this as it’s literally debilitating at this point, and they told me my levels were normal in 2024, and they don’t need to see me, and referred me back to OBGYN and that VWD was resolved. My original hematologist told me this is a life long issue, not one that just resolves out of nowhere.
My OBGYN ran the VW panel last week and as per usual my VWF and antigen is low normal but my Factor VIII is low, outside of the normal range. Has anyone else with VWD type 1 been dropped by hematology? I don’t know if this is worth continuing to look into or if I’m really just fine now? My only concern is that my husband and I want more children and my grandmother almost died from hemorrhaging with her second child. I don’t want to be overly cautious, but I am shocked at how easily they’ve just written me off.
ETA: OBGYN did check for polyps, fibroids, and other issues that could cause abnormal bleeding but all other tests and ultrasounds came back fine.