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If you have a clotting disorder... (m/c mentioned)


Forum: Trying to Conceive after Loss

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  #1  
February 15th, 2010, 06:54 AM
ohnicole's Avatar Mega Super Mommy
Join Date: Nov 2009
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Hi ladies. I just found out last week that I have a genetic mutation (prothrombin/Factor II) that increases clotting. I got tested because my sister tested positive for this mutation last month, so I had a much higher chance of having the same mutation.

My doctor said that this is one of the 'milder' clotting disorders, and that he doesn't recommend Lovenox during pregnancy unless you have one of 2 risk factors: 1) you have had a clot previously (a DVT or a pulmonary embolism or a stroke) or 2) you have had a 2nd trimester miscarriage. I don't technically meet either of these factors. But the reason my sister got tested was because she had a stroke (she does have an artificial heart valve which is a MUCH bigger risk factor). And my m/c was a missed m/c discovered at 12 weeks with the ultrasound showing the baby had stopped growing at 9 weeks. This was after we had previously seen a normal heartbeat.

My instinct is to request the Lovenox anyway (my doctor said he is ok with this) partly to protect my own health but mostly because I cannot handle another m/c late in the 1st trimester, let alone in the 2nd. One m/c after seeing a heartbeat and making it past the 12 week mark is enough for me and DH to deal with. I just don't see the point in risking another.

I guess I'm looking for input on whether anyone might have an argument against this strategy that I haven't thought of. And also if anyone here has a clotting disorder or autoimmune disorder and will be taking Lovenox upon getting a BFP (or has done it in a previous pg), I'd really love any tips/thoughts/etc on how hard it is, what might make it easier, things to look out for, etc.

Sorry if this is rambling, there's a lot of stuff going on in my head right now.
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  #2  
February 15th, 2010, 08:51 AM
mafiamom's Avatar Platinum Supermommy
Join Date: Jun 2009
Location: Bethlehem, PA
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i am sorry i have nothing to add as i dont (think) i have this issue... but i hope you get the answers you need and that super sticky bfp very very soon

it does seem tho, that if your doc seems ok with it - i would do it. it isnt like you DONT have the disorder and who decides when it becomes worse then mild? AFTER you have a 2nd tri m/c? seems like a pretty pukey way to come to that conclusion. so if he sees nothing wrong with it as a preventive measure - i would go for it!

GL with whatever you decide!
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  #3  
February 15th, 2010, 10:57 AM
Mega Super Mommy
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Hi Hun - Feel free to PM me if you want more info because this is long... but I've had three losses and after the second one (where they tested for chromosomal abnormalities and found none) I also got tested for clotting disorders. (All other tests for me were negative) I do have prothrombin as well (one copy), as well as a factor V mutation (one copy). No one in my family has had a clotting episode or stroke. I had some of my family tested, and it turns out that I got both disorders from my Dad. Since he doesn't talk to his family, that isn't very helpful as far as getting a family history...

Anyways, I've seen at least 10 doctors. I'm not kidding. OBs, REs, MFMs, and hematologists. I've read ALL the literature. There is no concrete evidence that clotting disorders cause first trimester losses. However, there's no good evidence that they DON'T. In fact, prothrombin, in my opinion, is just as bad if not worse than the widely publicized Factor V... it's just not as well studied. They're actually in the same biological pathway, so that's not surprising.

So most doctors told me it wasn't the cause of my losses. I have no way of knowing if it was, but after my third loss, I knew I wasn't going to try a pregnancy without trying something different. I finally got the OK from an MFM and a hematologist to try 40 mg of lovenox once daily from a BFP. That's what I did this pregnancy. I'm almost out of the first trimester, and as of two weeks ago, we had a heartbeat.

There will never be a way for me to know if my clotting disorders were behind my losses, but I don't regret at least trying this treatment. That said, if I hadnt had multiple losses, no doctor would have let me try the treatment because I just don't have a clotting history and neither does anyone I know of in my family. BUT - since your sister DOES have this history, I should think you may be able to find a doctor more inclined to give you the lovenox. My advice to you would be to seek more doctors' opinions until you feel comfortable with doing it/not doing it. Some doctors would at least give it to you after 12 weeks because of your family history.

I know this might sound horrible to you, and I understand because I've been there, but sometimes more testing isn't done till you have a few losses. That's because most miscarriages aren't caused by things like that, and a LOT of people have these mutations, and have NO problem having children. Who knows why it might cause some women to miscarry and some women not to... but without most test results to rule out other reasons, that's why you'll have a hard time finding doctors to give this to you just yet. But like I said, your family history might be the only way to get the lovenox if you do want to try it.

Edited to add.. that in my lengthy response I forgot that your doctor said that you could. I totally understand wanting to be proactive. I had decided not to try it just yet after loss #2, but loss #3 pushed me over the edge. The lovenox isn't fabulous. It hurts and it bruises and it's a giant pain in the butt.. and not all insurance companies cover it (it runs over $1000 a month if they don't)... but if it means a baby.. then it's all worth it.
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Last edited by farasha; February 15th, 2010 at 11:11 AM.
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  #4  
February 15th, 2010, 11:15 AM
AliciaF's Avatar Mega Super Mommy
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Location: Southern Cali
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I have Lupus Anticoagulants and MTHFR. I had 2 normal pregnancies and then lost my 3rd son at 20 weeks due to a placental abruption. I then had an additional 3 miscarriages.

After the 3rd miscarriage I started Lovenox from 3dpo and got pregnant that first cycle and now have an almost 4 month old daughter

I would highly recommend the Lovenox.
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  #5  
February 15th, 2010, 12:17 PM
Kary♥RN's Avatar Platinum Supermommy
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I am so sorry for your loss.... HUGS Welcome to the board... I am Kary I am now on my 4th Pregnancy Since Nov 08. I was Diagnosed with MTHFR A1298C Homozygous. I have been on a baby aspirin. Since Ovulation. This will be the first pregnancy while taken it...... IF I should m/c again... I will have another D/C.... The first was a very early loss at about 4 1/2 weeks. The second Loss was due to a chomosomal (Trisomny 22), and the third... I chose to m/c naturaly so I don't know what the reason was. On that third m/c is when they started to run the tests and While yes I have the MTHFR, I have no other risk factors, (in regards to other blood disorders). They are not 100% sure what to do with this form of clotting disorder. Some Dr's believe if you have no other issues.. a Baby aspirin will be enough, so go the over cautious side and start you on lovenox. I even went to see a hemetologist.... and he even said to me.. we just don't know... While I am at no higher risk.... they do not know about invetro.... And this may or may not be the reason I am m/c..... Maybe I just have a realy crappy luc.... Below is a link to a group I started... Please stop by.. I hope to get more people so us who are going through this... can have a support system.... Good Luck

JustMommies Message Boards - Thrombophilias- Blood Clotting Disorders- TTC and Pregnancy
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  #6  
February 15th, 2010, 07:20 PM
ohnicole's Avatar Mega Super Mommy
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Thanks so much for the responses. It really sucks to be in this limbo where the doctors don't really know the answers to any of the questions (especially when they pretend they do). It is absolutely true that they just don't have the studies on these disorders to really back up any particular statement about what kinds of m/c each disorder causes. And even if there were enough studies, it still just gives you statistics, and we all know that everyone's body can behave differently, and we can all end up on the wrong side of a statistic.

In a way I am lucky to have found out about my mutation now, before I had to have another 1 or 2 losses. Especially if they might have been 2nd trimester losses. I am still leaning towards the Lovenox, but I guess I will see what my doctors have to say next week when I have a couple of appointments before I make a final decision. Part of me is even terrified for my own health during a pg after my sister's stroke. It is a scary thing to see first hand.
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