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XP: Is there anything left to test for? Help me brainstorm.

AuburnBride06AuburnBride06
in Success after IF

Ok, so, we are not giving up. We refuse to. If we give up, we will still have nothing.  That's not an option for me. I love our life & giving up/not having a child would destroy everything. Persistence pays off. Eventually. 

I need help in coming up with any tests that we could still do. I know that my RE has probably covered everything, but next time I talk to him (next week) I want to be prepared to ask about things that we may not have covered. Here is a summary (going to be long):

Me: PCOS, FVL Hetero, MTHFR Hetero (c677t). Completely Anovulatory & amenorrheaic (sp?) without meds.  I am not IR & my RE does not think there is enough proof that metformin can decrease miscarriage rates in PCOS patients. No thyroid issues. I am overweight. 5'3" and 170lbs.

DH:  SA completely fine

We only knew of the FVL when we had the 1st loss. I take a BA everyday for the rest of my life.

1st Loss May 08: about 6 weeks, never made it to ultrasound. Sudden bleeding. Everything passed. D&C almost 3 weeks after loss due to HCG #s going back up due to retained tissue. Not enough to test. Only on low dose aspirin for this pregnancy.

2nd loss Late August 08:  Lost our twins at 6 weeks 2 days after seeing the heartbeats. Sudden bleeding, lost everything. Totally natural m/c. I was on BA & 40mg lovenox at the time of BFP.

After losing the twins, we had the RPL workup.  Karyotyping on both DH and I.  Only thing found was that I have MTHFR. This is when we added in the 4mg extra folic acid.

3rd loss late December 08: Chemical pregnancy/extremely early. 2nd beta never rose. Lovenox started at BFP.  Started period exactly 1 week late.

4th loss: this past weekend. Our beautiful triplets. Lost at 9 weeks. Farthest we have ever gotten. Had two great heartbeat checks at 6w2d and 7w4d.  Sudden massive bleeding. Ultrasound showed empty uterus with nothing but a huge clot.  This time, I had started lovenox 3 dp trigger shot. I did pass one of the babies but we chose to bury him instead of getting him tested.

Besides the RPL for all the clotting stuff, etc, I have also had an SHG (done after losing the twins) and had a HSG back when we started follistim (March 08). Everything fine there. No progesterone problems. Levels are always very high. Was put on oral prometrium anyway this last time just to ease my mind.  So besides testing actual fetal tissue, does it seem like we have done everything? Can anyone recommend/think of anything else I should ask him?  I respond well to follistim. Usually anywhere from 4-6 follies at the time of trigger, with 200 iu follistim for anywhere from 8-10 days. Estrogen at the time of trigger ranges anywhere from the high 1800s-mid to high 2000s.

Oh my RE did say we could up my dose to 80mg lovenox/day, but that there are risks involved. I think that was the only change he mentioned. Comments? thoughts?

TIA for any help you can give me.
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Re: XP: Is there anything left to test for? Help me brainstorm.

  • CBLCBL member

    I would ask for a complete list of what your RPL testing consisted of.  Different doctors have different protocols for testing.  Some don't believe in some of the more controversial ones.  I'd want to make sure EVERYTHING was tested.

    Have you heard of Dr Beer? He's a pioneer in immunology and it might be worth taking a look at his website.  https://repro-med.net/

    Also, maybe research IVG (I think that's what it's called).  It was suggested to a friend to complement a future IVF cycle because like you, they've tested for everything they can think of and can't find a reason for her multiple MCs.

    Last, and this is far out there, but is there any way an incompetent cervix could have contributed to this last MC?

    I'm so sorry for your losses.  IF is such a wicked and unfair thing.  No one should have to endure so much heartbreak.  

     

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  • SkypekWithoutACSkypekWithoutAC
    I wish I had suggestions for you, but I don't. I just wanted to let you know that I admire your strength and courage for choosing to persevere.
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  • Karma1969Karma1969 member

    Have you tried a different RE?  Maybe they have a theroy or suggestion that your RE hasn't considered.

    I really don't have any suggestions other than to say how sorry I am. 

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  • emmyloustuemmyloustu
    imageCBL:

    I would ask for a complete list of what your RPL testing consisted of.  Different doctors have different protocols for testing.  Some don't believe in some of the more controversial ones.  I'd want to make sure EVERYTHING was tested.

    Have you heard of Dr Beer? He's a pioneer in immunology and it might be worth taking a look at his website.  https://repro-med.net/

    Also, maybe research IVG (I think that's what it's called). 

    This. I too, I am so sorry for everything you have been through...

    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker TTC since Dec '04 Severe MFI-diagnosed 12/06 3 failed Fresh IVFs FET #1 - BFP!! 2 blasts tx on day 6. Beta #1 8dp6dt = 56, Beta #2 = 600, Beta #3 = 5600 My Blog Image and video hosting by TinyPic Image and video hosting by TinyPic
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  • sara1014sara1014
    imageKarma1969:

    Have you tried a different RE?  Maybe they have a theroy or suggestion that your RE hasn't considered.

    This isn't a bad idea at all.  Even if you completely adore and trust your RE, having a new set of eyes look at your information could bring in new ideas of what's going on.  

    I'm so sorry for what you've been through and admire your strength to continue.     

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  • skoorbniborskoorbnibor member
    Is IVF with PGD an option?
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  • LucyPevensieLucyPevensie member

    Auburn - here are some websites that may lead you to some answers or at least more information.

    This a group that follows the thinking of Dr. Beers (mentioned above) - you'll need to join to participate - some of the people can be a little alarmist so don't take everything you're told as "the gospel truth" - but it is a very valuable place to collect information and get feedback/insight on YOUR situation:

    https://health.groups.yahoo.com/group/immunologysupport/?yguid=207166036

    This page has info and links to other sources of information regarding recurrent miscarriage:

    https://www.asklenore.info/miscarriage/rcindex.html

    And this is a great blog - the doctor who writes it and responds to questions is SO nice - and he almost always WILL respond - he helped me when I had questions about my treatment (I too have Factor V Leiden hetero and I have homo MTHFR C677T.)  So I would write up your situtation much as you did here and post it as a comment on his blog - and see what he thinks.  Also - look through the blog archives - he has written a lot about recurrent pregnancy loss:

    https://www.healthline.com/blogs/pregnancy_childbirth/

    Hang in there sweetie - I hope you can find answers that will help you chart a successful path to parenthood for you and your husband.  Thinking of you and pulling for you!!!

    ~ Alicia

     

     

     

    Wheee!
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    "When it comes to sleeping, whatever your baby does is normal. If one thing has damaged parents enjoyment of their babies, it's rigid expectations about how and when the baby should sleep." ~ James McKenna, Ph.D., Mother Baby Behavioral Sleep Center, University of Notre Dame

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