I have a somewhat unique story as to how my diagnosis came to be... I had a DVT in 2015 and went through 6 months of anticoagulation therapy. Even though I was only 30, no one on my care team thought it was necessary to have a DVT workup. They essentially shrugged and chalked my DVT up to combo birth control and a sedentary job. Fast forward to moving to a new state and getting a new primary care doctor - red flags went off to her when I told her I'd never had a work up done and she sent me to a hematologist.
Two tests 12 weeks apart later, I was diagnosed with APS. The lupus anticoagulant came back positive both times. He opted not to put me on lifelong blood thinners to start, because I'm young and because I'd only ever had one clot and I had a number of additional risk factors at the time. But he did warn that I would need to be on lovenox throughout pregnancy. I was also diagnosed with primary lymphedema at age 16 and hypothyroidism at age 30... so my autoimmune system isn't a big fan of doing what it's supposed to.
Now, my husband and I are ready to start trying to have a baby and -- per the suggestion of each doctor we've seen -- we have a team of doctors lined up... a regular OB, high-risk perinatologist, and a hematologist.
Would love to hear some success stories to keep my spirits high as I know this is likely to be a challenging journey.