TTC After a Loss

RPL Results in

I got a call from my OB's nurse yesterday afternoon and she and told me everything was fine/normal with my RPL testing except that I am compound heterozygous for MTHFR.  She told me that it *can* be linked to recurrent miscarriage and my doc put me on a folate supplement that I am to take everyday.

 I haven't talked to my RE yet (I did the testing at my OB's office and they are sending everything to my RE) but of course, I came home last night and consulted Dr. Google.  It seems that adding a baby aspirin everyday is a common compliment to this diagnosis and depending on the doctor, it may be suggested that I take Lovenox shots once I get a BFP.

I'm trying not to worry about it too much now, as of course, results come at three on a Friday afternoon and my RE's office closes at 2 so I won't be able to talk to him until Monday.  I was just wondering if any of you ladies had any experience/knowledge about this?  Also, I'm wondering if I should push for any additional testing for any other RPL factors.  They only did a limited RPL panel which included testing for MTHFR, Factor V Leiden, Prothrombin and ANA.  I am just worried that if we find a way to manage this, something else might come up down the road and I could have headed it off earlier if I had been persistent about testing futher.  Sad

BFP #1:  8/10/11 EDD: 4/9/12 Natural miscarriage @ 7 weeks: 8/20/11
BFP #2: 8/31/12 EDD: 5/18/13 Chemical pregnancy: 9/4/12
BFP #3:  5/17/13  EDD: 1/24/14 Loss at 5 weeks: 5/29/13

image  imageimage

Lots of testing, all clear with the exception of compound heterozygous for the MTHFR mutation. 

Cycle 1: Femara, trigger shot, Bravelle added due to slow response = BFN
Cycle 2: Cancelled due to two cysts =(
Cycle 3: Femara, Bravelle, trigger shot and IUI = BFP then loss #3
Cycle 4: Femara, Follistim, trigger shot and IUI = BFP!  EDD: 6/7/14

image

PGAL/PAL welcome

Re: RPL Results in

  • I don't have any advice, but I do have big ((hugs)). I think several ladies on the board have experience with this. Finding "something" can be such a mixed blessing, but I'm glad it sounds like there's a treatment plan ready to go.

    BFP#1: 05/07/12, MC 05/13/12. BFP#2: 07/23/12, CP 07/28/12.
    8dpo progesterone = 5.8. Pom juice + progesterone = BFP#3: 10/15/12, EDD 6/27/13.
    Betas: 10dpo=29,14dpo=217, 24dpo=11835. HB at 5w4d=81bpm, 7w6d=154bpm!
    Great NT scan at 11w4d, HB=160bpm. A/S at 19w6d: We're team blue!
    Perfect baby boy born via unmedicated delivery on 6/10/13 at 37w4d.

  • I'm so sorry that you've gotten some worrisome and scary news.  But it sounds like there is a plan in place, and I will continue sending out the vibes that this brings you your happy ending!

    Love and hugs!

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    BFP 10/13/12 EDD 6/18/13
    PgAL and PAL always welcome and appreciated!
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  • I would talk to your doctor further about taking Baby Aspirin as a precaution,  though more and more the medical community seems to be leaning to the side the MTHFR doesn't play a huge role in miscarriage. Still, BA seems to have a good track record so this could be a situation where it's worth a shot - if nothing else to make you feel like you're doing something. Lovenox would probably be overkill though since you have no clotting factors coming back.  You're ANA's came back negative along with all the major clotting factors, that's a good sign. ANA's are a good indicator that there's something more going on which might require further digging.

    I'm homozygous MTHFR,  and will do Lovenox, but only because I had some other test's come back positive for thrombolphilia's. Otherwise my RE wouldn't be doing it if it was for only the MTHFR. 

    Married My Love on 6/18/2006
    BFP#1 10/1/2011. Our perfect little girl, Her heart stopped @ 12w1d. D&E 11/23/11
    BFP#2 3/13/12 Weird CP/Possible EP @ 6w0d
    BFP#3 5/28/12 CP @ 5w0d
    BFP/WTF#4 10/26/12 CP
    BFP#5 12/10/12 EDD 8/23/2013
    <3 Baby Boy Born 8/22/13 <3
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  • I agree that I wouldn't push for lovenox if it isn't clearly recommended.  Honestly, these blood thinners come with their own set of risks during pregnancy, so if there wasn't a strong reason to think it might help, there's a definite possibility of doing more harm than good.  If you have a clotting disorder, then by all means they should be taken.  But in the grey areas there are good reasons that docs are conservative about prescribing them.

     Did they test your anticardiolipin antibodies (IgM and IgG) and thyroid hormone?  Those were also part of my very basic RPL panel and I've seen them recommended as routine RPL tests in the medical literature.  The other things you might consider is a karyotype of you and DH, and some imaging like an SHG or HSG. 

     

     image
  • image killian09:

     Did they test your anticardiolipin antibodies (IgM and IgG) and thyroid hormone?  Those were also part of my very basic RPL panel and I've seen them recommended as routine RPL tests in the medical literature.  The other things you might consider is a karyotype of you and DH, and some imaging like an SHG or HSG. 

    I think this would be an important one for you since both you're losses were at early stages. You should also have standard CD3 blood work to test and 7dpo if you haven't already.

    Married My Love on 6/18/2006
    BFP#1 10/1/2011. Our perfect little girl, Her heart stopped @ 12w1d. D&E 11/23/11
    BFP#2 3/13/12 Weird CP/Possible EP @ 6w0d
    BFP#3 5/28/12 CP @ 5w0d
    BFP/WTF#4 10/26/12 CP
    BFP#5 12/10/12 EDD 8/23/2013
    <3 Baby Boy Born 8/22/13 <3
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  • Thanks so much for the hugs and advice ladies-I really appreciate it!

     Katharine-thank you for the input on the Lovenox.  I didn't know that it was basically only used when clotting issues were discovered too.  I also see a lot about the fact that there's no concrete link yet as to MTHFR and RPL, but that some are adamant it does-another medical mystery I guess.

    Killian-As far as I know, there has been no antibody testing done.  I will definitely put it on my list (and karotyping) to ask about when I talk to the doc.  I did an HSG a couple of months agos and it showed everything to be great.  Thank you for your thoughts!

    BFP #1:  8/10/11 EDD: 4/9/12 Natural miscarriage @ 7 weeks: 8/20/11
    BFP #2: 8/31/12 EDD: 5/18/13 Chemical pregnancy: 9/4/12
    BFP #3:  5/17/13  EDD: 1/24/14 Loss at 5 weeks: 5/29/13

    image  imageimage

    Lots of testing, all clear with the exception of compound heterozygous for the MTHFR mutation. 

    Cycle 1: Femara, trigger shot, Bravelle added due to slow response = BFN
    Cycle 2: Cancelled due to two cysts =(
    Cycle 3: Femara, Bravelle, trigger shot and IUI = BFP then loss #3
    Cycle 4: Femara, Follistim, trigger shot and IUI = BFP!  EDD: 6/7/14

    image

    PGAL/PAL welcome
  • image katharine25:
    image killian09:

     Did they test your anticardiolipin antibodies (IgM and IgG) and thyroid hormone?  Those were also part of my very basic RPL panel and I've seen them recommended as routine RPL tests in the medical literature.  The other things you might consider is a karyotype of you and DH, and some imaging like an SHG or HSG. 

    I think this would be an important one for you since both you're losses were at early stages. You should also have standard CD3 blood work to test and 7dpo if you haven't already.

     Yes, katharine is right.  Actually the blood clotting stuff is less strongly associated with early m/c--it's more typical to see losses after 10 weeks with those disorders, although they can also cause earlier m/c.  Chromosomal abnormalities on the other hand are often at play with early losses.

    Katharine--the CD3 and 7DPO bloodwork was not recommended by my docs or the New England Journal or British Medical Journal clinical practice overview articles I've read on work up for RPL.   I'm just curious--these are tests of your hormones to make sure your cycle can support a healthy egg release and early pg?  Like progesterone testing, for ex?  

     image
  • I actually did do the CD3 bloodwork at my first appt with my RE (lucky timing) but don't know what the results were.  We had set up a plan for the next cycle to be a medicated one (so I was going to ask then) but we ended up with a BFP that cycle and I haven't had another appt. yet.   I had on my list to to ask him about 7DPO testing this month also since with my last loss, my progesterone was a 6.8 on my first set of betas.  Thank you again for the advice!

    BFP #1:  8/10/11 EDD: 4/9/12 Natural miscarriage @ 7 weeks: 8/20/11
    BFP #2: 8/31/12 EDD: 5/18/13 Chemical pregnancy: 9/4/12
    BFP #3:  5/17/13  EDD: 1/24/14 Loss at 5 weeks: 5/29/13

    image  imageimage

    Lots of testing, all clear with the exception of compound heterozygous for the MTHFR mutation. 

    Cycle 1: Femara, trigger shot, Bravelle added due to slow response = BFN
    Cycle 2: Cancelled due to two cysts =(
    Cycle 3: Femara, Bravelle, trigger shot and IUI = BFP then loss #3
    Cycle 4: Femara, Follistim, trigger shot and IUI = BFP!  EDD: 6/7/14

    image

    PGAL/PAL welcome
  • ::HUGS::

    I do not have that Dx, but it seems that many ladies do have some type of MTHFR Dx and have been able to conceive/give birth.  Fx this is the case for you as well!


    image image imageimageimage  

    CFNBC after 8 losses and IF || History || My Angel Babies

  • image killian09:
    image katharine25:
    image killian09:

     Did they test your anticardiolipin antibodies (IgM and IgG) and thyroid hormone?  Those were also part of my very basic RPL panel and I've seen them recommended as routine RPL tests in the medical literature.  The other things you might consider is a karyotype of you and DH, and some imaging like an SHG or HSG. 

    I think this would be an important one for you since both you're losses were at early stages. You should also have standard CD3 blood work to test and 7dpo if you haven't already.

     Yes, katharine is right.  Actually the blood clotting stuff is less strongly associated with early m/c--it's more typical to see losses after 10 weeks with those disorders, although they can also cause earlier m/c.  Chromosomal abnormalities on the other hand are often at play with early losses.

    Katharine--the CD3 and 7DPO bloodwork was not recommended by my docs or the New England Journal or British Medical Journal clinical practice overview articles I've read on work up for RPL.   I'm just curious--these are tests of your hormones to make sure your cycle can support a healthy egg release and early pg?  Like progesterone testing, for ex?  

    Good to know-thank you!

    BFP #1:  8/10/11 EDD: 4/9/12 Natural miscarriage @ 7 weeks: 8/20/11
    BFP #2: 8/31/12 EDD: 5/18/13 Chemical pregnancy: 9/4/12
    BFP #3:  5/17/13  EDD: 1/24/14 Loss at 5 weeks: 5/29/13

    image  imageimage

    Lots of testing, all clear with the exception of compound heterozygous for the MTHFR mutation. 

    Cycle 1: Femara, trigger shot, Bravelle added due to slow response = BFN
    Cycle 2: Cancelled due to two cysts =(
    Cycle 3: Femara, Bravelle, trigger shot and IUI = BFP then loss #3
    Cycle 4: Femara, Follistim, trigger shot and IUI = BFP!  EDD: 6/7/14

    image

    PGAL/PAL welcome
  • I don't have any experience with this but I have read about it a fair bit on the boards. Hopefully because you have some sort of an answer you can form a plan and get your rainbow baby. At the same time though, I can see how you can worry. {{hugs}} Good luck with the RE as well!
    Married my own Prince at Walt Disney World Resort on September 9th, 2010 
    BFP#1 - 25/Aug/12 - EDD 2/May/13 - M/C - 08/Sept/12 - 6w2d - Never in my arms, forever in my heart <3
    BFP#2 - 13/May/13 - EDD 25/Jan/14 - Evelyn born January 27th 2014 

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  • image killian09:
    image katharine25:
    image killian09:

     Did they test your anticardiolipin antibodies (IgM and IgG) and thyroid hormone?  Those were also part of my very basic RPL panel and I've seen them recommended as routine RPL tests in the medical literature.  The other things you might consider is a karyotype of you and DH, and some imaging like an SHG or HSG. 

    I think this would be an important one for you since both you're losses were at early stages. You should also have standard CD3 blood work to test and 7dpo if you haven't already.


     Yes, katharine is right.  Actually the blood clotting stuff is less strongly associated with early m/c--it's more typical to see losses after 10 weeks with those disorders, although they can also cause earlier m/c.  Chromosomal abnormalities on the other hand are often at play with early losses.

    Katharine--the CD3 and 7DPO bloodwork was not recommended by my docs or the New England Journal or British Medical Journal clinical practice overview articles I've read on work up for RPL.   I'm just curious--these are tests of your hormones to make sure your cycle can support a healthy egg release and early pg?  Like progesterone testing, for ex?  

    Sorry, I was actually asking LSU about the cd3 b/w etc. I was quoting you for your karyotyping comment.  Yes, they are hormonal tests. I'm not really up on the meaning of them as much since it's not my issue, but I believe FSH can give some indications on egg quality as well... but don't quote me on that.

    Married My Love on 6/18/2006
    BFP#1 10/1/2011. Our perfect little girl, Her heart stopped @ 12w1d. D&E 11/23/11
    BFP#2 3/13/12 Weird CP/Possible EP @ 6w0d
    BFP#3 5/28/12 CP @ 5w0d
    BFP/WTF#4 10/26/12 CP
    BFP#5 12/10/12 EDD 8/23/2013
    <3 Baby Boy Born 8/22/13 <3
     photo ellie.gifPhotobucket
    image
    image
  • image katharine25:
    image killian09:
    image katharine25:
    image killian09:

     Did they test your anticardiolipin antibodies (IgM and IgG) and thyroid hormone?  Those were also part of my very basic RPL panel and I've seen them recommended as routine RPL tests in the medical literature.  The other things you might consider is a karyotype of you and DH, and some imaging like an SHG or HSG. 

    I think this would be an important one for you since both you're losses were at early stages. You should also have standard CD3 blood work to test and 7dpo if you haven't already.


     Yes, katharine is right.  Actually the blood clotting stuff is less strongly associated with early m/c--it's more typical to see losses after 10 weeks with those disorders, although they can also cause earlier m/c.  Chromosomal abnormalities on the other hand are often at play with early losses.

    Katharine--the CD3 and 7DPO bloodwork was not recommended by my docs or the New England Journal or British Medical Journal clinical practice overview articles I've read on work up for RPL.   I'm just curious--these are tests of your hormones to make sure your cycle can support a healthy egg release and early pg?  Like progesterone testing, for ex?  

    Sorry, I was actually asking LSU about the cd3 b/w etc. I was quoting you for your karyotyping comment.  Yes, they are hormonal tests. I'm not really up on the meaning of them as much since it's not my issue, but I believe FSH can give some indications on egg quality as well... but don't quote me on that.

    Thanks!  Yeah I figured it wasn't directed at me--I was just trying to learn something.  :)   

     image
  • At least there are some answers coming back. I had a similar dx and went to baby aspirin and such. I went ahead and got pregnant again and was feeling very positive, only to have another devastating loss. All the BA and supplements didn't help because obviously my issue was chromosomal.

    So I would also encourage you to ask about karotyping. It probably won't show anything but then it would be one more thing crossed off the list. And if it does show something, then you can deal with that.

    Hugs! Sounds like you are on a good path to answers and that's something.
    image image image    
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    IVF #4 - March 2013 - BFP! --- EDD 12-19-13
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  • No advice. Just hugs and the hope that the rest of the weekend passes quickly for you.
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    Patiently waiting for my lovelies on TTCAL to come join me.


    BFP #1 12/7/2011 EDD 8/21/2012 Delivered at 15 weeks 2/27/2012
    "I'll love you forever. I'll like you for always. As long as I'm living, my baby you'll be."
    BFP#2 10/19/2012 EDD 6/30/2013 Muppet delivered 6/28/2013

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    Everyone is welcome in my posts.

  • I just got my RPL results on Thursday and my main diagnosis is PCOS but he also mentioned that on my thrombophilia panel I was positive for PAI-1 but he wasn't really concerned about it, though he did put me on baby aspirin and extra folic acid. He specifically said that since I didn't test positive for the Factor V Leiden that I did not need Lovenox. I have no idea if the PAI-1 is at all related to the MTHFR so I'm not sure if this is helpful for you, but maybe something you'll want to ask him about on Monday.

    My RPL workup also included testing for insulin resistance, CD3 bloodwork, karyotyping on both DH and I, a sonohystogram, and testing for cystic fibrosis and spinal muscular atrophy for me (but not DH).

    I hope you can get some more detailed answers from your doctor on Monday! 

    Baby Birthday Ticker Ticker
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    BFP #1: 11/2009, m/c at 11 weeks, EDD 7/2/2010 
    BFP#2: 4/2010, DS1 born 12/15/10 
    BFP#3: 1/2/2012, m/c at 12 weeks, EDD 9/12/2012 
    BFP#4: 4/23/2012, m/c at 8 weeks, EDD 12/21/2012
    RPL Results 9/2012: PCOS and PAI-1 
    1500 mg Metformin, baby aspirin, Foltx & progesterone
    BFP#5: 10/20/2012, DS2 born 6/6/13 at 36 weeks
  • I'm also compound heterozygous. I take 4mg of Folic Acid, 100mg of B6 and 1 mg of B12. Ive had two REs tell me that baby aspirin was not only not needed but also would increase the risk of m/c if taken when not needed. I also had my homocysteine levels checked which is a better indicator of blood clot risk. Mine was normal. if it hadn't been they would have put me on some sort of blood thinner.

    Other tests for RPL to consider would be thyroid levels, anti-thyroid antibodies, NK assay, and probably some stuff I'm leaving out. You might have had them done already. I think I'd feel better doing all the testing I could so I could go into another pregnancy with a little more confidence and hope. I know it sucks though.


    My Blog: Grow Baby Grow

    BFP #1: 12/2009 m/c 1/2010 BFP #2: 6/2010 m/c 8/2010

    BFP #3: 10/2011 ectopic 11/2011 (right tube removed, learned left tube was probably nonfunctional due to scar tissue from infection after m/c)

    3 failed IUIs, IVF #1: 18R, 12M, 10F, 3 poor quality 5d embryos transferred= BFP #4!!!!!

    Betas: 9dp5dt: 64 ~14dp5dt: 91 (expecting miscarriage, doubling time of 236 hours) ~16dp5dt: 200~18dp5dt: 500

    First Ultrasound at 6w2d revealed two sacs, only one with a heartbeat

    Laura Kate arrived after 42 weeks on August 14, 2013! Beautiful, healthy, and happy!

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  • image jenek0213:
    At least there are some answers coming back. I had a similar dx and went to baby aspirin and such. I went ahead and got pregnant again and was feeling very positive, only to have another devastating loss. All the BA and supplements didn't help because obviously my issue was chromosomal. So I would also encourage you to ask about karotyping. It probably won't show anything but then it would be one more thing crossed off the list. And if it does show something, then you can deal with that. Hugs! Sounds like you are on a good path to answers and that's something.

    Thank you so much Jenek.  That is definitely my concern-that there is more that we don't know yet and I'd just like to have as many answers as possible before we start any medicated cycles.  I'm definitely planning on asking about karatyping.  Thanks!

    BFP #1:  8/10/11 EDD: 4/9/12 Natural miscarriage @ 7 weeks: 8/20/11
    BFP #2: 8/31/12 EDD: 5/18/13 Chemical pregnancy: 9/4/12
    BFP #3:  5/17/13  EDD: 1/24/14 Loss at 5 weeks: 5/29/13

    image  imageimage

    Lots of testing, all clear with the exception of compound heterozygous for the MTHFR mutation. 

    Cycle 1: Femara, trigger shot, Bravelle added due to slow response = BFN
    Cycle 2: Cancelled due to two cysts =(
    Cycle 3: Femara, Bravelle, trigger shot and IUI = BFP then loss #3
    Cycle 4: Femara, Follistim, trigger shot and IUI = BFP!  EDD: 6/7/14

    image

    PGAL/PAL welcome
  • image OSUJaydee:

    I just got my RPL results on Thursday and my main diagnosis is PCOS but he also mentioned that on my thrombophilia panel I was positive for PAI-1 but he wasn't really concerned about it, though he did put me on baby aspirin and extra folic acid. He specifically said that since I didn't test positive for the Factor V Leiden that I did not need Lovenox. I have no idea if the PAI-1 is at all related to the MTHFR so I'm not sure if this is helpful for you, but maybe something you'll want to ask him about on Monday.

    My RPL workup also included testing for insulin resistance, CD3 bloodwork, karyotyping on both DH and I, a sonohystogram, and testing for cystic fibrosis and spinal muscular atrophy for me (but not DH).

    I hope you can get some more detailed answers from your doctor on Monday! 

    Thanks OSU!  I have had the CD3 bloodwork and an HSG done (not sure of the difference between that and a sonohystogram?) but I don'[t think I have been tested for the others.  I will certainly put that on my list of things to ask for.

    I hope the plan they have for you does the trick!

    BFP #1:  8/10/11 EDD: 4/9/12 Natural miscarriage @ 7 weeks: 8/20/11
    BFP #2: 8/31/12 EDD: 5/18/13 Chemical pregnancy: 9/4/12
    BFP #3:  5/17/13  EDD: 1/24/14 Loss at 5 weeks: 5/29/13

    image  imageimage

    Lots of testing, all clear with the exception of compound heterozygous for the MTHFR mutation. 

    Cycle 1: Femara, trigger shot, Bravelle added due to slow response = BFN
    Cycle 2: Cancelled due to two cysts =(
    Cycle 3: Femara, Bravelle, trigger shot and IUI = BFP then loss #3
    Cycle 4: Femara, Follistim, trigger shot and IUI = BFP!  EDD: 6/7/14

    image

    PGAL/PAL welcome
  • image Laurakat81:
    I'm also compound heterozygous. I take 4mg of Folic Acid, 100mg of B6 and 1 mg of B12. Ive had two REs tell me that baby aspirin was not only not needed but also would increase the risk of m/c if taken when not needed. I also had my homocysteine levels checked which is a better indicator of blood clot risk. Mine was normal. if it hadn't been they would have put me on some sort of blood thinner.

    Other tests for RPL to consider would be thyroid levels, anti-thyroid antibodies, NK assay, and probably some stuff I'm leaving out. You might have had them done already. I think I'd feel better doing all the testing I could so I could go into another pregnancy with a little more confidence and hope. I know it sucks though.

    Wow, good to know!  I was going to ask about the homocysteine level check since from what I've read it seems to be a good indicator but that reinforces my thoughts since you believe the same also.

    I don't think I've had the other tests so I'm adding those to my evergrowing list too!  Thanks lady!

    BFP #1:  8/10/11 EDD: 4/9/12 Natural miscarriage @ 7 weeks: 8/20/11
    BFP #2: 8/31/12 EDD: 5/18/13 Chemical pregnancy: 9/4/12
    BFP #3:  5/17/13  EDD: 1/24/14 Loss at 5 weeks: 5/29/13

    image  imageimage

    Lots of testing, all clear with the exception of compound heterozygous for the MTHFR mutation. 

    Cycle 1: Femara, trigger shot, Bravelle added due to slow response = BFN
    Cycle 2: Cancelled due to two cysts =(
    Cycle 3: Femara, Bravelle, trigger shot and IUI = BFP then loss #3
    Cycle 4: Femara, Follistim, trigger shot and IUI = BFP!  EDD: 6/7/14

    image

    PGAL/PAL welcome
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