I am new to this group and Im sure many of you will understand, but this journey has just been a roller coaster of emotions for me and I am so overwhelmed. I was diagnosed with ICP at 30 weeks. This is my second pregnancy but my first ICP pregnancy. My first pregnancy was textbook and absolutely no problems so this has been a very different experience. The problem Im running into is my doctors not being knowledgable about ICP. I felt confident after finding a Maternal Fetal Medicine doctor that knew about ICP. However the confidence faded when he prescribed me some vitamin K (I have bad bruising and he was concerned about my clotting-fair enough) but when I went to fill the prescription the pharmacist came out to speak to me about how he refused to fill the prescription because hes never seen a dosage that high and that my blood would just clot and not flow with a dosage like this. This whole ICP journey has been a roller coaster of emotions. Ive had 3 wrong blood test taken and before finding ICPCare.org and doing my own research is when I found what blood test to request and only then did I finally get the correct diagnosis. I was told I was just fine after wrong labs were taken (I was even ordered a lipid panel test-which as most know is to test cholesterol-nothing to do with my liver! And I was told by the nurse I could google it that it was a test to diagnosis ICP!) and these are just a few instances Ive encountered. So some of my questions are is taking vitamin K is necessary and if that is something I should be prescribed? Also how often are others getting their levels tested? My specialist requested every week however my obgyn told me its optional and wont write the lap slips without fighting tooth and nail. There is absolutely no communication between my obgyn and the specialist I am seeing. Im honestly at my breaking point and dont know who to reach out to, I feel my doctors arent communicating and feel my health and my baby is in danger with the lack of care. If anyone from the DC area has recommendations for any doctors knowledgable on this I am open to hear about them too. I am so glad I found this group!
Posted on: Sun, 30 Mar 2014 01:39:50 +0000
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