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Lupus Anticoagulant
An_240149 posted:
I have a question regarding lupus anticoagulant.
My first pregnancy ended at 24 weeks due to extreme growth retardation and ambiguous genitalia. He was more than 5 weeks behind in growth. At the time, drs had no answers and told us to try again. After much investigation, they decided it was a fluke abnormality.
Our second pregnancy went fine until 26 weeks when growth again stopped and I ended up delivering our daughter at 28 weeks. She is now thankfully a healthy 7 year old. Our perinatologist at the time said that bloodwork showed that I tested positive for lupus anticoagulant and any future pregnancies would require blood thinners and baby aspirin.
I followed up with two separate hematologists in the following year or two wanting to learn more only to have them both tell me their tests did not show I had it at all.
Over the past year, I began consulting with a perinatologist in our new town of Atlanta - he is highly qualified, more than 25 years experience, teaches at Emory, founder of a large practice, etc. After reviewing all of my medical records from both pregnancies and all of the tests from the two hematologists, he believes that the anticoagulant is only appearing while I am pregnant which would explain why the differing test results. Because I do not have a history of miscarriages as most people with lupus anticoagulant do but instead have growth issues, he believes my case is mild and is only detectable when pregnant.
My question is whether this is possible? I obviously have a very complicated and painful history and it is hard for me to trust doctors. I question everything and I constantly struggle with who and what to believe. We need to try and get some straight answers on this potential disorder before we can even consider taking that big leap of faith of trying for another child. Can I have lupus anticoagulant in such a mild form that it only presents when I am pregnant and does not appear when I am not pregnant?
JN
My first pregnancy ended at 24 weeks due to extreme growth retardation and ambiguous genitalia. He was more than 5 weeks behind in growth. At the time, drs had no answers and told us to try again. After much investigation, they decided it was a fluke abnormality.
Our second pregnancy went fine until 26 weeks when growth again stopped and I ended up delivering our daughter at 28 weeks. She is now thankfully a healthy 7 year old. Our perinatologist at the time said that bloodwork showed that I tested positive for lupus anticoagulant and any future pregnancies would require blood thinners and baby aspirin.
I followed up with two separate hematologists in the following year or two wanting to learn more only to have them both tell me their tests did not show I had it at all.
Over the past year, I began consulting with a perinatologist in our new town of Atlanta - he is highly qualified, more than 25 years experience, teaches at Emory, founder of a large practice, etc. After reviewing all of my medical records from both pregnancies and all of the tests from the two hematologists, he believes that the anticoagulant is only appearing while I am pregnant which would explain why the differing test results. Because I do not have a history of miscarriages as most people with lupus anticoagulant do but instead have growth issues, he believes my case is mild and is only detectable when pregnant.
My question is whether this is possible? I obviously have a very complicated and painful history and it is hard for me to trust doctors. I question everything and I constantly struggle with who and what to believe. We need to try and get some straight answers on this potential disorder before we can even consider taking that big leap of faith of trying for another child. Can I have lupus anticoagulant in such a mild form that it only presents when I am pregnant and does not appear when I am not pregnant?
JN
2 Replies |Watch This Discussion | Report This| Share this:Lupus AnticoagulantI have a question regarding lupus anticoagulant. <br /><br />My first pregnancy ended at 24 weeks due to extreme growth retardation and ambiguous genitalia. He was more than 5 weeks behind in growth. At the time, drs had no answers and told us to try again. After much investigation, they decided it was a fluke abnormality. <br /><br />Our second pregnancy went fine until 26 weeks when growth again stopped and I ended up delivering our daughter at 28 weeks. She is now thankfully a healthy 7 year old. Our perinatologist at the time said that bloodwork showed that I tested positive for lupus anticoagulant and any future pregnancies would require blood thinners and baby aspirin.<br /><br />I followed up with two separate hematologists in the following year or two wanting to learn more only to have them both tell me their tests did not show I had it at all.<br /><br />Over the past year, I began consulting with a perinatologist in our new town of Atlanta - he is highly qualified, more than 25 years experience, teaches at Emory, founder of a large practice, etc. After reviewing all of my medical records from both pregnancies and all of the tests from the two hematologists, he believes that the anticoagulant is only appearing while I am pregnant which would explain why the differing test results. Because I do not have a history of miscarriages as most people with lupus anticoagulant do but instead have growth issues, he believes my case is mild and is only detectable when pregnant.<br /><br />My question is whether this is possible? I obviously have a very complicated and painful history and it is hard for me to trust doctors. I question everything and I constantly struggle with who and what to believe. We need to try and get some straight answers on this potential disorder before we can even consider taking that big leap of faith of trying for another child. Can I have lupus anticoagulant in such a mild form that it only presents when I am pregnant and does not appear when I am not pregnant?<br /><br />JN
R Swamy Venuturupalli, MD, FACR responded:
Thank you for sharing your story. I am very sorry about your previous miscarriages. That must be very traumatic.
What your current perinatologist has said is quite plausible. I would suggest that you follow up with him and get as many opinions as possible. Ultimately, you should choose the doctors with whom you feel most comfortable for your next pregnancy. Wishing you the best.
What your current perinatologist has said is quite plausible. I would suggest that you follow up with him and get as many opinions as possible. Ultimately, you should choose the doctors with whom you feel most comfortable for your next pregnancy. Wishing you the best.
Report This| Share this:Lupus AnticoagulantThank you for sharing your story. I am very sorry about your previous miscarriages. That must be very traumatic. <br /><br />What your current perinatologist has said is quite plausible. I would suggest that you follow up with him and get as many opinions as possible. Ultimately, you should choose the doctors with whom you feel most comfortable for your next pregnancy. Wishing you the best.
tanderson209 responded:
Your story is very amazing and interesting. I too have LupusAnticoagulant and was Officially diagnosed in 2008, however I was told I had it since I was a child. Constant Nose Bleeds growing up, I had Toximia with my first child and delivered him at 8 1/2 months and I went into pre-labor with my second child at 6 months and had to be on Bed Rest until I delivered him at 9 months. Both births were C-Sections. I got my first Pulmonary Embolism after my Partial Hysterectomy in 2002 and then got another PE 5 years later in 2007. After the second PE, they installed a Greenfield Filter in the Vena Cava vein for future ones. Unfortunately my Blood Work did not show that I had Lupus Anticoagulant until after 2002. I was very fortunate to deliver both of my sons but it was by the Mircales of God that they both made it. My Granfather died at age 52 from a Blood Clot in the Heart, and 3 of my relatives passed on from having SLE. I have been able to get a great nutrition product that keeps me going, energized, and has eliminated my depression. I hope to hear back from your future results. God Bless.
Report This| Share this:Lupus AnticoagulantYour story is very amazing and interesting. I too have LupusAnticoagulant and was Officially diagnosed in 2008, however I was told I had it since I was a child. Constant Nose Bleeds growing up, I had Toximia with my first child and delivered him at 8 1/2 months and I went into pre-labor with my second child at 6 months and had to be on Bed Rest until I delivered him at 9 months. Both births were C-Sections. I got my first Pulmonary Embolism after my Partial Hysterectomy in 2002 and then got another PE 5 years later in 2007. After the second PE, they installed a Greenfield Filter in the Vena Cava vein for future ones. Unfortunately my Blood Work did not show that I had Lupus Anticoagulant until after 2002. I was very fortunate to deliver both of my sons but it was by the Mircales of God that they both made it. My Granfather died at age 52 from a Blood Clot in the Heart, and 3 of my relatives passed on from having SLE. I have been able to get a great nutrition product that keeps me going, energized, and has eliminated my depression. I hope to hear back from your future results. God Bless.
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Dr. R. Swamy Venuturupalli is a board-certified rheumatologist practicing in Los Angeles. He is Clinical Chief of the Division of Rheumatology at Ce...More
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