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Prothrombin gene mutation
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Stephy861 posted:
I have recently been tested for this. Just wondering if anyone else is dealing with this also?
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marathonmel responded:
I'm more of a lurker here...but I happened to see your post. I have this mutation as well. I've been on Lovenox injections for the duration of my pregnancy. Will you be on blood thinners? The shots aren't great, but they're not the worst thing either...you get used to them. I'm 34 weeks and haven't had any issues. Good luck!

Melissa
 
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NICHOLE0528 responded:
Hi was also diagnosed with this after my 2nd m/c. I am pregnant again, approx 5 weeks and I take lovenox injections twice a day and progesterone supp at night. I was on a baby aspirin while we were trying to get pregnant. Best of luck to you, I was grateful that they found a likely reason for the m/c and it was treatable.
 
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islandlover2004 responded:
I am almost 17weeks pregnant and just found out I'm positive for MTHFR and prothrombin gene mutation. The reason I was tested was because my sister tested positive after having a miscarriage at 16 weeks. This is my first pregnancy. After finding I was positive for MTHFR, my OB prescribed 5mg of folic acid rather than 1mg. I just found out about the prothrombin 2 days ago. My peri seems to think these mutations are no big deal, thinks that women with these mutations are overprescribed lovonox and heparin and thinks that no action is necessary. This concerns me as I read about so many women with this mutation who are on blood thinners, although most if not all of them have already suffered miscarriage, which I have not.
 
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bcmom1 responded:
I get so irritated with doctors who act like this is nothing. I've had 2 miscarriages and the daughter that I do have only by a miracle was born at 28 weeks and spent 51 days in the NICU. We are still fighting preemie issues at 18 months old, but are blessed to even have her. My doctors said that if I hadn't happened to be at the doctor's office when my placenta ruptured from a clot, she would probably not be here. I am so thankful for those doctors that are "over-prescribing" Lovenox. I am 14 weeks pregnant and dread getting my shot (it really only hurts for a few seconds and sometimes not at all), but am so confident that this pregnancy is going to be successful due to the medicine. I am also on extra folic acid, B vitamins, and baby aspirin. I feel way over-medicated, but would do that any day over having another preemie or worse another loss.

Now, that being said, my mom and sister both have the same disorder. My mom had my sister and me without a single complication. My sister had 1 miscarriage, 1 full term baby, 1 baby born 5 weeks early and then the last one she was treated with just baby aspirin and she was induced because her placenta ruptured at 38 weeks. It affects everyone differently, but I would highly recommend the shots. My hematologist is the one that prescribed me the Lovenox and he told me that if I went to a different hematologist, they would probably not prescribe it.
 
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lovebug1111 responded:
I also have Factor V Leiden and am trying to get pregnant and was wondering how this was all going to work. I haven't had any kids yet but mine was found out due to a development of a DVT after surgery and the Dr. was going to chalk it up to birth control.
 
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Mz_attitude90 responded:
my family has it and if you have any questions i can help you to the best of my knowledge and they have factor v leiden and prothombien as well. if you have any question i will be more than to try and answer them.
 
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amberrgraham responded:
I do not usually post things like this, but I felt compelled to about this topic. I was diagnosed with the Prothrombin gene mutation yesterday after I had a stillborn baby at 26 weeks in October. It's hard for me to understand why I was not tested for this early on in the pregnancy. I am glad to have gotten an answer as to why I lost my baby, but also frustrated because this could have been prevented.

The doctor told me that with my next pregnancy, I will take two injections each day (not sure which medicine just yet). I hear the risks are much lower while on the medicine.

I just want to let everyone know that this disorder is serious. My baby was healthy and growing fine until around 24 weeks. By the time we realized it, it was too late.
 
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kramer1109 replied to amberrgraham's response:
I was tested for the prothrombin gene mutation after my sister suffered 3 miscarriages in her 3-4 month of pregnancy and they found out that she has the mutation. This is a serious condition. Not only did she suffer the miscarriages, but my neice was born at 33 weeks in an emergency situation that she and my sister almost died (this was before my sister knew she had the mutation). After she found out she was prescribed the lovenox twice a day and had my nephew, a healthy baby with no complications.

There are many complications that can arise from this mutation. The benefit of taking the blood thinners far out weigh any risk. Late miscarriages, still birth, and complications of delivery are just to name a few. If you know that you have this mutation and are pregnant it should be treated by a hematologist who is experienced with dealing with it. I am thankful that I am able to know this information and not have to go through the terrible experiences many women have, including my sister to find out about this mutation. When I get pregnant, I will be getting the injections twice a day for my health and the health of my baby.
 
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4theteam responded:
WOW- I know it is not the exact same, but I am 5 mos. pregnant with my 4th and just got out of the hospital with a PE ( pulmonary embolism). I was treated with heperin IV and released on Lovenox shots 2x daily.
While I am still waiting allllllll the blood tests...I wonder if they will find the same...I have had 2 other miscarriages before.
Question..besides a hemotologist...does anyone see a cardiologist or pulmonologist or anything like that? I need information, so anything you guys can help me with, I'd appreciate! Thanks!
 
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Brittabh replied to amberrgraham's response:
Amber, So sorry for your loss. I just discovered this website and also felt compelled to reply to your message. I had a stillborn last April at 21 weeks and discovered 2 months later that it was b/c I have a Prothrombin mutation. The baby boy looked healthy at the 20 week ultrasound but sadly 11 days later at a regular check-up there wasn't a heartbeat. I was devastated, needless to say. It was my 2nd pregnancy. I had a healthy girl in 2005 and didn't know that I have the mutation. Thank God she was ok. I wish I would have known I had the mutation when I was pregnant with my baby boy. I had never heard of such a thing. I'm glad I know now. I am 6 weeks pregnant now and have an appt tomorrow to discuss the injections if everything looks good at the ultrasound. I am praying!! I'm going to the high risk Perinatology clinic at the hospital and the nurse said they don't usually start the Lovenox until 12 weeks but for me they will start around 10 weeks, or 8 weeks if I insist. I'm thinking I want to start them as early as possible! Have you gotten pregnant again? I hope that you are doing well.
 
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Amelia_WebMD_Staff replied to Brittabh's response:
Hi Brittabh,

Please keep us posted on how your appointment went.

I see that you stated that you are new to the site and just wanted to share a tip with you about posting. When reading an older thread like this one, it is better to not add a post, but instead to start a new one.

Most of the members and moderators try to keep the posts up to date because often important posts, such as yours that you have posted here, are overlooked when attached to the bottom of a very old post.

We are so happy to have you joining us on the WebMD community boards and look forward to hearing more from you! I hope that everything went well at your appointment. You are in my thoughts. Please do keep us posted.
Best Wishes! Amelia
 
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KKS1975 responded:
I normally do not write on these boards but my mom forwarded me this link and I was compelled to share what I know. I am pregnant right now with my 3rd baby and have had to have lovenox and heparin injections for all 3 pregnancies. I was diagnosed after having a blood clot prior to being pregnant. I was told that I would have difficulty getting pregnant and with miscarriages but luckily I have had no such problems. 2 years ago I went to the mayo clinic (for an unrelated problem) but saw a hematologist there to ask about prothrombin gene mutation. He said that it is actually a fairly common disorder and that they can trace it all the way back to the first people who had it. He also said that they did not have the technology up until a few years ago to test for this disorder. He did say that unless a woman had a clot prior to pregnancy or suffered multiple miscarriages that it was not necessary to do lovenox or heparin during pregnancy. The one thing I do know is that if you are on heparin/lovenox towards the end of your pregnancy, carefully note the times each day that you take the shot because if you do go into labor the Anesthesiologist will be VERY hesitant to give you an epidural if you don't know the exact timing. I guess it is very dangerous if given too close to the time of an injection and they do not want to be held responsible. Good Luck with everything,
 
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MeShelle23 replied to KKS1975's response:
Thank you so much for this information. I waited until I was almost 31 before getting pregnant, I had no problems at all, I was a very active person and exercised a lot.had a beautiful boy. 3 years later became a personal trainer with great nutrition habbits, and decided to have one more baby. Pregnant first try made it 5 weeks- then miscarriage. 1 & 1/2 yrs later tried again- first try pregnant. At 10 weeks doctor said come back in 2 weeks thought something was wrong but I was carrying twins. (Shocker) Then at 14 weeks discovered one baby was not growing at all- 2 weeks later the other baby stopped growing. Waiting to be sure they were right and looking at two more ultra sounds hoping for growth or signs of life -I had to abort at 4mths. Pretty emotional time for us. After blood test was taken I was sent to a Dr. to find out why and what to do about it, then3 months later meeting him to hear him say it's not a big deal and just take an aspirin a day. That's it and stressed that I should be lucky I ever had one child. He was very rude which I don't care about as much as that I thought he was going to tell me what I could do to fix the problem. I'm not a very sympathetic emotional person and was unbelievable upset at his definition and explanation of the problem. Basically he told me there was nothing I could do. My husband left there with the thought that I was messed up and that he didn't want to try again in fear of having a child with disabilities.I mean the word "Prothombien Gene Mutation" sounds terrifying. hehe! I gave in to his worries and mine and over time have become angry of the whole thing, mostly with my husband and self for not trying again. And alothough I just turned 40, after reading this I can't tell you the feeling I have right now in knowing that there is something I can do about it. I wish I had done more research but I took the dr.'s word. My son is now 9 and excited about the possibility of another baby. Just have to get my husband on board. Thank you so much your input has been greatly appreciated. I wish you the best of luck with your three blessings. MeShelle
 
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lucy1107 replied to MeShelle23's response:
Y'all make me smile! I have Factor V Leiden and Prothrombin Gene Mutation and had all but given up on ever getting pregnant until last week. I had decided that until I'm told absolutely NO, then I'm going to move mountains to have my own child. See, I'm 41 now; when I was younger (like 20 years ago younger) I had 2 miscarriages and this was before they knew what all of this was. So, I had no answers until a few years back when I had a P.E. (Pulmonary Embolism). That sucked!! I'm on coumadin for life and was told if I got pregnant ever I'd be on Lovenox during the pregnancy and it worried me. I just read all these postings and I have such renewed faith that I can be a mom!! Yay!! Thank you to everyone that shared your story. I'm sorry for your losses, believe me, I have walked in your shoes and to this day have not felt the joy of being a mom. I'm going to go make that dream come true. Lucy


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