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Results of the blood testing for recurrent loss are in!


Forum: Trying to Conceive after Loss

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  #1  
March 12th, 2012, 11:29 AM
JulieMc's Avatar Loving my babies. :)
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My midwife called this morning and I missed the call, but she left a message. All my blood tests from the recurrent miscarriage testing came back. She said that 2 of the clotting tests came back positive. So I called back and I was able to speak with the medical assistant. They want me to see a geneticist, and are making the appointment with him for me and will call me back some time today and let me know when it is. Supposedly he'll be able to explain it to be, and what it means for the future.

I am so thrilled I am getting answers. Hopefully a daily dose of aspirin is all I need, but if I have to do the injections of stuff..whatever, I'll do it..I'll do whatever is necessary.

Oh, and they said I will need to go get additional blood tests now too since those came back positive. I forgot to ask if the fetal tissue testing results came back, so I"ll ask when they call me back later. And I need to get the exact diagnosis from those blood tests so I can start Googling like crazy and be informed when I do get to meet the geneticist, and hopefully so I am ready in case I get pregnant soon (we've been trying already). I tried to get the names from the MA, but she's sorta clueless...it's beyond her....she said its something to do with PAI coagulation and that's all she knows about it.

Wow... I am sooo glad I pushed for the testing. I hope my appointment with the genetics guy is soon...do you know if the waits are usually long?? regardless though, when they call back I'm going to ask for copies of the lab reports so I can read them...I can get them whenever I go get my blood drawn again.

I am wondering...does this mean I will need to see a high-risk doc next time, in addition to the midwife..like a perinatologist or whatever they are called? All I know is...I must have been extremely lucky to have had no problems with Kelly and Lyla.....
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  #2  
March 12th, 2012, 11:40 AM
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i am vary happy that u got the results back in a timely manner and that u are on your way to your rainbow baby
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  #3  
March 12th, 2012, 03:14 PM
pepper73's Avatar Mega Super Mommy
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I'm so glad you got some answers!! I hope that the doctor was able to call you back and get you set up with an appointment soon. Keep us posted! I hope that it's an easy fix for you!!
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  #4  
March 12th, 2012, 03:15 PM
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I am glad you got your results back and I hope you get all your answers very soon!
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  #5  
March 12th, 2012, 03:16 PM
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I'm so glad you're finding some answers! I hope the baby aspirin is all you need, too!
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  #6  
March 12th, 2012, 04:20 PM
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I'm glad you got the results back and they are sending you the to specialist. I think the doctor will be able to give you more information but I *think* with have 2 of them you will more than likely be on the injection blood thinner. If you do get pregnant before you see your doctor make sure you call them ASAP because they might need to start you on it right away. I know that the ladies that do the injections start them as soon as they get the BFP so just be careful.
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  #7  
March 12th, 2012, 07:46 PM
JulieMc's Avatar Loving my babies. :)
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Yea...that's what I'm reading today...2 means injections. Eek. That scares me a little. But..whatever needs to be done, I'll suck it up and do it.

They were not able to get ahold of the doc today, so hopefully tomorrow she has office hours and I'll find out when my appointment is.. She is apparently board certified in ob/gyn, clinical genetics and neonatal/perinatal medicine. Oh, and I am going in tomorrow to have more blood drawn because they said that she will want additional tests done before I come in.... anyone know what else they might be testing for? I guess I'll find out tomorrow when I pick up the lab form.

I am just nervous that it is going to be a long wait...and I don't want to wait long, especially since we've not been trying to avoid pregnancy and it is always a possibility. Like you said Katie..from everything I'm reading..they have them start the injections the day they find out that they are pregnant......

It is interesting though...from what I am reading about the PAI-1 mutation (the one that I know I have...don't know what the other one is..).... somehow, in addition to making your body unable to break up clots, it makes you more likely to hemorrhage, which is exactly what happened with my most recent miscarriage.
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  #8  
March 13th, 2012, 03:34 AM
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Quote:
Originally Posted by JulieMc View Post
Yea...that's what I'm reading today...2 means injections. Eek. That scares me a little. But..whatever needs to be done, I'll suck it up and do it.

They were not able to get ahold of the doc today, so hopefully tomorrow she has office hours and I'll find out when my appointment is.. She is apparently board certified in ob/gyn, clinical genetics and neonatal/perinatal medicine. Oh, and I am going in tomorrow to have more blood drawn because they said that she will want additional tests done before I come in.... anyone know what else they might be testing for? I guess I'll find out tomorrow when I pick up the lab form.

I am just nervous that it is going to be a long wait...and I don't want to wait long, especially since we've not been trying to avoid pregnancy and it is always a possibility. Like you said Katie..from everything I'm reading..they have them start the injections the day they find out that they are pregnant......

It is interesting though...from what I am reading about the PAI-1 mutation (the one that I know I have...don't know what the other one is..).... somehow, in addition to making your body unable to break up clots, it makes you more likely to hemorrhage, which is exactly what happened with my most recent miscarriage.
Yeah I really don't know too much about it. They tested me for it and I do have 1 of the mutations and they told me to do a baby aspirin but I don't *have* to. I did take one if I got a positive test though. With the injections the reason your more likely to hemorrhage is they are a blood thinner. I know that my OB had told me that my RE might want to do another test for a different clotting disorder that usually does not affect pregnancy but that runs in my family. I'm not exactly sure what it is.
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  #9  
March 13th, 2012, 07:29 AM
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I have to say, i was thrilled when I got a blood clotting diagnosis. Because it was black-and-white that I was not just "broken" and it meant a pretty easy fix to get my rainbow baby. I think lots of women who find out something is wrong are happy to have a direction to go in.

The second set of tests is comfirmation tests. Some of the positives can be "false" if they were taken too close to an illness or even the miscarriage itself. So they always test twice, generally six weeks apart, to make sure the same ones are coming up positive. Chances are, with two popping, you are positive. But they like to be sure. It does depend on which ones come up positive what this course of treatment is. I only have one, but had to be on lovenox for my entire pregnancy (BFP to delivery and six weeks after). It was because the one I have is known to cause problems and was the likely cars of my many miscarriages and the fact that my first son had an unhealthy placenta and cord (and came early). So it is still possible you won't have to do the shots, since I have no clue about the particular ones you have.

But the shots are really easy to gqet used to. They sound bad, but when it comes down to it, they are easy and well worth it! I would not be planning another pregnancy if they were that bad

But anyway, glad you got some answers! I hope the road from here on out is smooth!
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  #10  
March 13th, 2012, 08:31 AM
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Quote:
Originally Posted by ashj_1218 View Post
I have to say, i was thrilled when I got a blood clotting diagnosis. Because it was black-and-white that I was not just "broken" and it meant a pretty easy fix to get my rainbow baby. I think lots of women who find out something is wrong are happy to have a direction to go in.
I think it is great you got some answers and it most likely is an easy fix! When I got the testing done, everything came back normal. There was nothing I could do to "fix" what was making my losses happen. I think sometimes it's better to have an answer, especially when it's something that can be fixed. KWIM?
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  #11  
March 13th, 2012, 10:13 AM
JulieMc's Avatar Loving my babies. :)
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Okay....I got more info today. The mutation I have is PAI-1 4G/4G. I still don't know what the second one is because the medical assistant didn't give me a copy of that one. GRR. I asked for copies of the lab reports for the abnormal results. Instead though, she did give me the results from the fetal tissue testing (which she said were not in yet..weird!!)...and that says the baby was a normal male. So...it's definitely something wrong with me. Too bad I didn't look at the papers while I was still there... I'd have made her go back and copy the other.

On the bloodwork for today, they were checking homocysteine levels....and they threw in another HCG test for good measure.

After my appointment my sister called...my mom called her and told her about my results....and my sister told me about some info she recently got. She is apart of a research study at Cleveland Clinic...when she had her last baby, in April...they banked his cord blood for free as part of compensation for participating in the study. I'm not sure exactly what they are studying...but she said she recently met with a doctor involved in the study, and they told her that they had looked at her placenta and said that it had clots and that she had placental infarction. I looked it up, and placental infarction is closely associated with blood clotting problems. Very interesting!! She said that they also took a bunch of blood for testing after they told her that...but she doesn't know what they were testing for or the results yet. She is going to get me copies of the info though...so I can show it to the genetics doc.

So..that's my update for now. Still no word on when my appointment with the genetics doc will be... grrr! I don't know why I can't just call myself and set it up....
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  #12  
March 13th, 2012, 01:14 PM
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i'm glad you're getting answers Julie...are you being referred to an RE to discuss a treatment plan for next pregnancy? I don't have answers to your original question about whether you'll be treated by a peri/high risk doc...mostly b/c I couldn't get a completely clear answer on that myself. It's pretty standard once you're in an RE's care to see only the RE until they discharge you (usually between 6-8weeks along)...but what happens next depends partially on your OB's approach - mine likely will have me in with a peri, but i already would do that b/c of my age...so unclear yet how much additional monitoring would occur b/c of the blood clotting mutation issue.
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  #13  
March 13th, 2012, 04:11 PM
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I am so, SO glad you are getting these answers <3 I can only imagine how much of a relief this must be for you, to have figured out a problem, know there will be a solution, and be able to hopefully breathe and move forward.
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Jan. 2009: Came off years of BCP and started TTC
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Oct. 27, 2010: I held him in my arms while Daddy, Grandma, Great-Uncle and I sang him to sleep =( Hardest thing I've ever done...
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Dec. 2011: 2nd medicated cycle. BFN.
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Feb. 2012: Same regimen of Clomid and other meds, add IUI. 2 eggs and 8.5 million swimmers. BFN.
March 2012: 75 IU Follistim CD 3-11, follie scan CD 8 showed 6 follies likely to mature. Triggered, IUI on CD 14, 4 million swimmers. BFN.
April 2012: 75 IU Follistim CD 3-10. Scan showed 2 mature follies, 2 almost certain to mature, and two not likely but possible. (All 6 evenly and perfectly spaced out between the left and the right.) Triggered, IUI CD 13 with 5 million swimmers. BFN.
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  #14  
March 13th, 2012, 05:37 PM
JulieMc's Avatar Loving my babies. :)
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I hope this is the problem and there will be an easy fix.

The specialist's office called... they won't see me until March 29th...in two weeks. I am so bummed. I was hoping to get in ASAP. I already have an appt. with my midwife on the 28th. The specialist is going to more bloodwork, but what I am not sure. She said my HCG is at 5 today, but it needs to be 0 for them to do this bloodwork...argh.

I know in the grand scheme of things 2 weeks is nothing...but, um....I'm super impatient and it's a long time to wait when you've been given a diagnosis and told nothing about it....and when there's a possibility of getting pregnant before the appointment... *sigh*
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  #15  
March 13th, 2012, 06:04 PM
JulieMc's Avatar Loving my babies. :)
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Quote:
Originally Posted by L-SBB View Post
i'm glad you're getting answers Julie...are you being referred to an RE to discuss a treatment plan for next pregnancy? I don't have answers to your original question about whether you'll be treated by a peri/high risk doc...mostly b/c I couldn't get a completely clear answer on that myself. It's pretty standard once you're in an RE's care to see only the RE until they discharge you (usually between 6-8weeks along)...but what happens next depends partially on your OB's approach - mine likely will have me in with a peri, but i already would do that b/c of my age...so unclear yet how much additional monitoring would occur b/c of the blood clotting mutation issue.
Nope..not an "RE". Apparently they are referring me to a high risk OB (MFM) for consult and further testing. Should I be asking to see an RE or is a MFM doc sufficient??
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  #16  
March 14th, 2012, 06:55 AM
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Julie, did you ask them what they will do if you get a BFP before the appointment? I would want to be seen right away...and I would hope that they'd fit you in to make sure you are on a treatment plan as soon as you possibly can.
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  #17  
March 14th, 2012, 07:30 AM
JulieMc's Avatar Loving my babies. :)
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I did not ask. I'll just call them up if I do get a BFP though....and I will demand to be seen that day.
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  #18  
March 14th, 2012, 05:48 PM
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I also have the PAI-1 disorder (finally just recently diagnosed, and it was such a relief to have an answer) and was told injections for sure (even though it was the only thing that came back positive). Definitely follow up with your sister's results as my RE told me this is particular clotting disorder is genetic, and my DR believes that it played a role in the deaths of my dad (stroke), aunt (PE), and grandmother (heart attack), all on their forties. It can be scary, but thankfully it is easily managed. Good luck to you!!!!
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  #19  
March 14th, 2012, 07:45 PM
JulieMc's Avatar Loving my babies. :)
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Originally Posted by ldhopkins View Post
I also have the PAI-1 disorder (finally just recently diagnosed, and it was such a relief to have an answer) and was told injections for sure (even though it was the only thing that came back positive). Definitely follow up with your sister's results as my RE told me this is particular clotting disorder is genetic, and my DR believes that it played a role in the deaths of my dad (stroke), aunt (PE), and grandmother (heart attack), all on their forties. It can be scary, but thankfully it is easily managed. Good luck to you!!!!
Oh wow..... yea, I am giving my mom and sister a copy of the results...and I told them that on the lab report in the section about genetic counseling recommendations, it says you should tell your family members so that they can be tested for it too. I am wondering if it came down from my mom's dad...he died in his 50's from a heart attack and had coronary artery disease, and my aunt had some kind of mini stroke last year...
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  #20  
March 14th, 2012, 09:02 PM
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I am so glad you got some results!

I have three blood clotting disorders (one being the same as one of the ones you have):

MTHFR (A1298C Mutation) I am heterozygous for this one meaning I only have one copy of the gene

PLASMINOGEN ACTIVATOR INHIBITOR-1 4G/5G (or PAI-1) I tested positive for two copies of the 4G variant (Homozygous) which means I got a copy from my mom and one from my dad.

FACTOR V (LEIDEN) MUTATION Heterozygous for the Factor V Leiden R506Q Mutation.

After my last m/c in Feb 2011, the dr did half of my blood clotting panels when we confirmed I had lost the baby then they did the other half at my genetics counseling appt. My appt was a few weeks after our loss. It felt like a long wait so I totally understand.

We got pregnant again in July/August 2011 and I am now 35 weeks along with a healthy baby girl...I hope that gives you some hope! I am on baby asprin for the rest of my life. I started the lovenox injections at my 6 week appointment after they saw the heartbeat. I know some people do end up starting as soon as they get a BFP. I hated waiting because I felt like if we didn't start them right away I would end up losing the baby but it wasn't the case. I had already been taking the baby asprin for several months though so that did give me some piece of mind.

I was so scared to take my first shot. The thought of pushing something sharp into my skin was scary. It is SO easy though and you will get used to it if you do end up on the shots. It helped me to actually go slow with the needle. I can't jab it into my skin...that just freaks me out. If I go slow, sometimes I don't even feel it (not sure if I am just hitting some numb spots in my stomach though where I had a csection with our son). The pain usually comes from the actual medicine moreso than the needle itself. It still isn't bad at all though. I start Heparin injections next week (two a day instead of once a day with lovenox). They start Heparin because it can be reversed if needed in emergency situations...and it only lasts 12 hrs.

Anyway, I hope this helps you some. Feel free to send me a PM on here if you need someone to talk to that has been through it. I am so thankful to have these shots!

There is a group on babycenter.com called Lovely Lovenox Ladies (should come up in google) that you might want to check out if you do end up on the shots...or even before. There is a lot of good information there.

*hugs*
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