Hi, my name is tayler and I am new to this board, but not new to ITP. I was diagnosed 2 years ago on the 21st, the night before my 21st birthday. I had a platelet count of 11 and petechia all over my body. They gave me high doses of Dexamethasone and my count would jump to 400 and fell to 9 six weeks later and again to 8 six weeks after again. The dex would make me itch all over, I didn't sleep, I broke out in acne everywhere, my heart rate stayed at 130, my glucose shot up to 300 and I needed insulin and I got suicidal thoughts so they decided I couldn't take that anymore. I have had bad bone pain in my hips and the ends of my femurs (like the knee and ankle). I was then put on Nplate with no bone marrow biopsy and it barely held me above 30 for 8 weeks before we decided to do Ivig treatment. While on ivig my counts stabilised at 250 which is my normal range but I continued to show signs of bleeding like petechia on my feet and ankles and inside of my elbows, petechia with any pressure or trauma, really easy bruising, blood when I blow my nose and brush my teeth. So, after a couple months of that my hematologist sent me to u of m cancer for a consult where she ran a bunch of tests and my dilute Russel viper venom test and the titer were both prolonged and my hemonk basically said well I don't know why that is and I just think you have weak capillaries and that's why you are having bleeding symptoms and I think you of arthritis in your hips. At 21/22. Arthritis. Okay. So it was never further looked into, well I got pregnant in April and delivered a baby boy this November. While I was pregnant, all of my symptoms disappeared. My platelet count was normal and I showed less bleeding symptoms, but still some and my bone pain was still there but I was also pregnant so it could've been that. I almost bled out during birth, I lost double the amount of blood I was supposed to and my hemoglobin went from 15 to 11 even though my platelet count was 217. Since giving birth my platelets have been 412, 316, 252, 190, 171, 164 and back to 171 in that order but my bone pain and bleeding symptoms are back full tilt. My hemonk retired and the guy who took over for her reviewed my tests and said my platelets aren't functioning right and that's why this is happening but he has no idea why. So he is sending me for these blood tests:
PT/INR
PTT
Factor (2, 5, 7, 8 activity, 9, 10, 11, 12, 13 antigen assay, leiden, mixing studies, dRVV test, Lupus anti-coagulent)
Anticardiolipin (IgG, IgM, IgA)
Vonwillebrand profile
I was just wondering if anyone had anything similar or can explain any part of any of this to me I guess.
Thank you.
