Hi all, I have posted here before about clotting disorders and pregnancy - and have been through a long, weird string of doctors, and got a *final* diagnosis last week. Maria, I, too have May-Thurner Syndrome.
Almost 9 years ago (while not pregnant) I had a stroke. They tested for clotting abnormalities, and found none. I had a patent foramen ovale, which was closed via open heart surgery. Since then, I've been fine.
Now my dh and I would like to have a baby. We saw an OB and discussed my health history, and she wanted me checked out by a hematologist. He checked my blood and told me I had a high count of IgM anticardiolipin antibodies. 8 weeks later, we rechecked and they came up high again. He told me I had Antiphospholipid disorder and put me on baby aspirin. He also told me I was at risk of blood clots, heart attacks and strokes, and that should I get pregnant I'd have to take lovenox 40 mg daily.
I started the baby aspirin and basically freaked out at this news. After a few months, I decided to go to the Mayo Clinic for a second opinion. They restested my blood for any clotting problems. They found none. My IgM anticardiolipin antibodies came up normal, at 7, wherease before they were 23 and 22. I was told that they can fluctuate, and that someone with true APS will not have fluctuating levels. They also told me that many doctors rely on testing methods that are not reliable. They reviewed my records from the time of my stroke and concluded that I have May Thurner Syndrome. They said I will not need the Lovenox or anything for that matter, but will require anticoagulation therapy after delivery and several weeks postpartum.
Maria, I read your story with pregnancy and May Thurner and am now concerned! Your doctors told you pregnancy and May Thurner were not contraindicated, yet you had a clot form. Did they decide that your being pregnant was just coincidental to the clot forming at that time? Sounds like they want to keep you medicated should you become pregnant again. They told me it's not necessary.
I have had one child 7 years prior to my stroke, no complications, so it is possible to have a baby with May Thurner and have no problems. I'm hoping the second will go as easy as the first. That being said, I'm still seeing a high risk OB - I'm a bit nervous, too!
I'd love to hear back from Maria or anyone else with May Thurner about pregnancies! Thanks!
Hi. I have had 2 miscarriages in 7 months. The last one was 2 weeks ago. So far there is no explanation, but the doctor is going to send me for blood testing. He seems to believe that I have some blood clotting disorder because everything was ok, we saw a heartbeat, and then at 9 weeks, 1 day (both times) the heart just stopped beating. I wanted to connect with some people who have had similar experiences. What tests have they run? Have you had successful deliveries?
Hi, I am new here... I am 25 and been with my husband who is also 25 for 10 years, married 2 1/2. I recently found out I have a blood clotting disorder.
I was 27 1/2 weeks pregnant with my first baby and I stopped feeling my daughter moving. I called the doctor and when I went in we discovered she had passed away. There was no heartbeat. That night I had to go into the hospital where they induced me. I delivered my daughter Katlyn February 8th, 2008 at 8:53 a.m. She was 1 lb 6 oz and 12 inches long. There was no blood in her umbilical cord and my doctor said the placenta looked "funny". She looked perfectly normal, just small, but not breathing.
Today I had a doctor's appointment where they went over blood tests they did at the hospital as well as the autopsy results. She basically died from not getting enough blood. And my test results showed that I most likely have a blood clotting disorder which I guess is hereditery, although I know of no one in my family that has one. It has been hard for me because until this happened everything was normal. At my 20 week ultrasound she looked fine and healthy. She was moving around like crazy and her heartbeat was strong. This kind of came out of no where and was totally unexpected.
My husband and I still really want a child and are hoping to try again this summer after we have met with a high-risk pregnancy doctor. I guess I'm just soo scared this is gonna happen again. I was just looking to connect with people on here who have gone through similar situations and were still able to go on and have healthy babies.
Oh my god! That is devastating. Well, my baby was only 9 weeks old, but that is exactly what happened with me. It was fine, there was a heartbeat, and then I just stopped feeling pregnant and the doctor said the heart stopped beating. He has sent me to a hemotologist this week to do bloodwork, but he suspects blood clotting disorder, since that was the second time that happened. Both pregnancies stopped on week 9, day 1 and they were 5 months apart. Please keep me posted. I am so sorry for your loss. Hopefully weŽll both find answers. Please write anytime.
Girls, I don't have any disorder but I did had a m/c that ended up in a d&c with no idea of what had happen to my baby. I was 8 weeks pregnant and when I went to the doctor 2 times we couldn't hear the heartbeat until the doctor send me to the u/s place and they saw no heartbeat, it was weired because days before I felt pregnant and all of the sudden I didn't feel pregnant so I had a big concern and knew that something was wrong. I don't understand why this happens but there should be a reason. Months after I got pregnant again with my second baby boy he is now 3 months old what a blessing. So don't give up girls have faith and soon you will be holding your baby in your arms. DOn't let those doctors scare you always have faith and keep trying don't get stuck with one doctor go for second opinions.
Thanks Lily. Well, I go to the hemotologist next week, so hopefully I have some answers. By the way, I live in Mexico. Does anyone who posts here live outside the USA, by chance?
Hello, I am now 35 weeks pregnant and am on Lovonox shots. I am suppose to start Heparin shots next weeks. My pharmasist had a hard time finding Heparin because of a mass recall. He just called me today and told me he found some and it will be here in 3-4 days. I am scared to take it. Why the recall? Is anyone else on it right now or switching to it.
Hi - just thought I would reply to the question about the heprin recall - In the past year, I have had 3 m/c, all at about 8 weeks. After the third, my dr. did blood tests and found I carry Factor Five Leiden and one other clotting disorder, but I can't remember the name right now. Just before receiving those results, I got a positive preg. test! Yes! We are very excited, but very nervous as soon as we received this news. I was put on a daily injection of Lovenox (40mg/day) and I was told I would be put on heprin at 34 weeks because you can not be on a blood thinner if you are going to have an epidural - Heprin is reversable, but Lovenox is not, so they put you on Heprin about a month or so before delivery so they can reverse it just before they give you an epidural and you will not be effected. As for the heprin recall, it only effected a certin brand of heprin, called Baxtor, I beleive. Since, the company has not produced the drug. The reason for the recall was because it was contaminated and caused about 40 deaths in the US, along with many more people whom experienced horrible side effects. So, with that said, from what I have read and I have spoken with 3 different drs., the heprin that can be found now is safe to use and you should not fear. I hope this helps you out.
As for the daily injections, I am wondering if anyone has any tricks for doing them - I have a very bruised, very sore tummy right now - is this something I can just expect for the rest of the pregnancy. I will do ANYthing if it means saving this pregnancy - just wondering if there is some releif I can expect or just live with it.....
I have two beautifull children, a boy-5 years old & a girl 3 yrs old. 6 months ago in December I was hospitalized w/Pulmonary Emboli. After lots of different blood tests they found out I have several different blood disorders. I have Protein S & C deficiency, Factor V Leiden, MTHFR, and the Lupus Anticoagulant. I had no problems with my first two pregnancies and have not had any miscarriages (I thank God for that). My husband and I would like to have more children but my Dr.s think it's very risky. I understand why they think it's risky, but I've had these disorders my whole life and didn't have any problems w/my first two babies. In the future they say from the Time we make the decision to get pregnant until I'm done nursing I'll have to do Lovonox shots. I just ran across this website today and I'm glad there's a support network out there for people like us. I always thought I was alone in this, but I realize after doing all of my research that there are so many people out there with these same issues.
My name is Jennifer and I am 29 I had a sever case of pre-eclampsea at 29 weeks. I became very ill and had to have my son c-secton because he was with out oxygen for 30 minutes, he was born normal, by passed after 24 hours. My kidney shut down and i had to have dialysis for 7 days and then a blood transfusion to get my kidney working again. This was when i developed my blood clot through my whole right leg. I was also tested and found out tht i have the factor 5 clotting disorder. ( Never knew i had this all my life)
I am geting ready to try again and i also have tp be on lovonox for the whole prgenany. This is very scary for me. It is conforting to hear other stories and know that i am not alone. Best of luck to all of you.
hi everyone... i'm currently 30 weeks pg. and they found a huge blood clot in my groin area of my left leg. I was in the hospital for a week and they sent me home on lovenox injections twice a day. everything was good at first but after a week i started getting an allergic reaction to the shots (full body itching) then after about two weeks of being on the shots i started getting a rash on my legs and arms (it looks like rasor rash). We were told that we can't get the heprin injections and the only other thing i can do is get put back on heprin with an i.v. which i will have to be hospitalized for.
i was wondering if anybody else had this problem..
hi, i just saw your post and am new to this site. I too was just diagnosed with a clot in my left left. From my groin to my knee. My Dr. put me on the Lovenox also 60 mg twice a day for the rest of the pregnancy. I am 25 weeks now. I have been on them for almost a week now with no symptoms yet,. but I will def. keep an eye out for them. Can I as where do you inject yourself because I am having a really hard time with finding the right spots ya know?
hi i got pregnant in december o6 i found out the 10th and miscarried the 13 then in feb. 07 i found out i was pregnant the 17th and miscarried the 24 and i have been trying for over a year and found out i was pregnant august 27 08 and sad to say miscarried the 31 so i went back to my doctor an they ran some test came back i had factor 5 something wrong with the clotting in the blood and that was the reason why i kept miscarring and now the doctor put me on 1 prenatial vitaim and 4 folic acid a day untill i get pregnant then they have to put me on something stronger anyone had a expeirence like this before thank
hi girls- for more on lovenox and what happens when youre pregnant with clotting disorders, see the "lovenox and pregnancy" thread under the "female infertility factors" support group in the shared journey forums. TONS of info to read through and a lot more frequent visitors/postings/ and answers to your questions!
gorman- dozens of girls with the same experiences over there, you'll likely be put on lovenox injections to prevent clotting next time you get pregnant.
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