Screaming into the void...recurrent pregnancy loss

[Anonymous]

Anonymous wrote:Yes keep advocating for more testing. You might want to pursue immunological testing. Have them check your levels of natural killer cells. Some people have an over abundance of them and others have a normal amount but happen to have overly active natural killer cells who mistake a pregnancy for a foreign invader and sadly, attack the pregnancy. There are various ways to treat this. Many women with recurrent miscarriage and elevated natural killer cells have found that being on a low dose of prednisone helps to keep their pregnancy being attacked by natural killer cells. I am so sorry for each of your losses. I hope you will find a path forward to an eventual successful pregnancy. What a challenging journey this is. If you aren't already working with a therapist, you may want to consider working with a therapist who provides infertility counseling. Please be kind to yourself as you persevere on your uncertain journey. My thoughts are with you, and I truly hope that brighter days are ahead for you.

This is what I am doing. I'm starting the testing process with a RI. He suspects I have an undiagnosed clotting disorder based on the timing of my losses, but isn't ruling out other immunological causes. Literally I've been tested for everything. A huge panel of autoimmune diseases, A1C is fine so my OB refuses to put me on metformin. Haven't been tested for NK levels so that's on there, but I've had lots of genetic tests and absolutely nothing shows up. Thyroid was under 2 when I lost the last baby, heart stopped suddenly.

Really appreciate your kind words. It's been a total demoralizing journey. My worst nightmare growing up was the fear of suddenly finding myself totally infertile.

[Anonymous]

I'm so sorry OP. I had five losses in two years before I had my son. It's an awful trauma merry go round. I was so upset when I first realized I was pregnant with my son because we just couldn't face another loss, but now we are through it and he's here. Three recommendations - Dr Kliman at Yale was finally able to diagnose my problem. He is amazing. And Mount Sinai's Rainbow clinic in NYC for Drs who know what you are going through. Dr Humm, now at Shady Grove is also wonderful and kept me sane, as did a therapist with experience in fertility and loss. If you have confirmed genetic problems, that is probably the issue. It sucks so much. Hang in there.

[Anonymous]

So so sorry, Op. It does suck. There’s so much the professionals don’t know, too. Also, have the man checked. I know that you’ve been studied, but can you get to a top reproductive endocrinologist in the nation. Take a day or 2 trip to someone who studies recurrent loss. That’s my advice.

[Anonymous]

Anonymous wrote:I'm so sorry OP. I had five losses in two years before I had my son. It's an awful trauma merry go round. I was so upset when I first realized I was pregnant with my son because we just couldn't face another loss, but now we are through it and he's here. Three recommendations - Dr Kliman at Yale was finally able to diagnose my problem. He is amazing. And Mount Sinai's Rainbow clinic in NYC for Drs who know what you are going through. Dr Humm, now at Shady Grove is also wonderful and kept me sane, as did a therapist with experience in fertility and loss. If you have confirmed genetic problems, that is probably the issue. It sucks so much. Hang in there.

We have no genetic issues, the screen of 900+ genes came back negative as well as the karyotypes for both of us. All of his testing was negative for everything too. Every.single.test is negative. All of the babies we've lost were normal karoytypes.

[Anonymous]

Have you been tested for MTHFR?

[Anonymous]

I went through 4 losses (including 2 late losses). They tested me, my husband and the fetuses for everything under the sun and couldn't find anything wrong.

Finally, as a hail mary, my doctor tried me on blood thinner injections (even though I didn't test positive for any clotting disorders). It worked. I was able to carry & deliver a full term healthy baby.

[Anonymous]

Heparin or Lovenox injections. Or baby aspirin, OP. Talk to your doctor about trying it. It's helped a lot of women carry to term when they weren't able to previously.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Yes keep advocating for more testing. You might want to pursue immunological testing. Have them check your levels of natural killer cells. Some people have an over abundance of them and others have a normal amount but happen to have overly active natural killer cells who mistake a pregnancy for a foreign invader and sadly, attack the pregnancy. There are various ways to treat this. Many women with recurrent miscarriage and elevated natural killer cells have found that being on a low dose of prednisone helps to keep their pregnancy being attacked by natural killer cells. I am so sorry for each of your losses. I hope you will find a path forward to an eventual successful pregnancy. What a challenging journey this is. If you aren't already working with a therapist, you may want to consider working with a therapist who provides infertility counseling. Please be kind to yourself as you persevere on your uncertain journey. My thoughts are with you, and I truly hope that brighter days are ahead for you.

This is what I am doing. I'm starting the testing process with a RI. He suspects I have an undiagnosed clotting disorder based on the timing of my losses, but isn't ruling out other immunological causes. Literally I've been tested for everything. A huge panel of autoimmune diseases, A1C is fine so my OB refuses to put me on metformin. Haven't been tested for NK levels so that's on there, but I've had lots of genetic tests and absolutely nothing shows up. Thyroid was under 2 when I lost the last baby, heart stopped suddenly.

Really appreciate your kind words. It's been a total demoralizing journey. My worst nightmare growing up was the fear of suddenly finding myself totally infertile.

Recommend getting the Dr. Beers panel, which will include immune issues and obscure blood clotting disorders. I've had 3 losses in the last four years. Lost my only good tube with the first loss. I've miscarried one PGT-tested embryo, failed transfer of another top quality PGT-tested, and miscarried a day 3 that was genetically normal. During the time, we found I have a blood clotting disorder, which isn't a surprise because of the severe preeclampsia with my son very early. But I was on blood clotting meds during my two miscarriages. After the last one, I was forced out of my clinic (it closed) and went to CFA because I was out of answers. She chased down EVERYTHING. We found an additional blood clotting disorder no one tested for (MTHFR) and obscure immunological factors (HLA and KIR matching, Th1/Th2 ratios), which can also explain what happened with my son, and another uterine issue. I don't know if it will work yet, but we're moving onto IVIG and other immune suppressant drugs.

I agree with how utterly demoralizing it is. On top of that, I don't make many eggs so every embryo is precious and it sucks to finally get pregnant and then lose it, and the problem is all me.

[Anonymous]

Sending hugs. I'm so sorry.

[Anonymous]

I'm so sorry!
After my first pregnancy ended in stillbirth, I had losses at 6 weeks, 11 weeks, and 11 weeks.It was excruciating every time, and I still grieve those babies daily.
My stillbirth was unexplained. The 6 week loss is assumed to be genetic causes. The two 11 week losses were due to an undetected issue with my cervix.

[Anonymous]

I lost 5 pregnancies over 5 years. I did the Dr. Beers panel and not much came up. I knew i had heterozygous MTHFR but most reproductive endocrinologists didn't really care about that, I didn't have the clotting genes they cared about. CFA would have put me on IVIG if I had successfully gotten pregnant there, but I eventually went to donor egg.

With my last donor embryo at shady grove I basically threw the kitchen sink at it anyway- I did lovenox and prednisone and metformin, and stayed on them far longer than my MFM wanted. I eventually switched to baby aspirin after stopping the lovenox at 30 weeks, and continued taking metformin.

One other thing I didn't investigate, but the placenta formation also depends on the sperm and an unknown clotting disorder there could also cause issues with placental blood flow. (most of my losses were at 8-9 weeks, when the placenta takes over)

I'm so sorry, OP. It's heartbreaking.

[Anonymous]

Hi OP, I was you about 12 years ago having suffered 6 losses and then my immune issues were uncovered. I had losses 7 and 8 on immune treatments and then we added Neupogen and my 9th pregnancy was successful and she started middle school this year. I went to CFA, Beer Center and eventually found success with Dr. Braverman. I miss Dr. Braverman so much but believe his office is carrying on well after his passing. That would be my recommendation for you and sounds like others here agree. I now have 3 Braverman babies, they are 11, 9 and 7.

[Anonymous]

Anonymous wrote:Heparin or Lovenox injections. Or baby aspirin, OP. Talk to your doctor about trying it. It's helped a lot of women carry to term when they weren't able to previously.

I was on baby aspirin but the doctors refused to put me on Lovonox. They still do. So I'm finally seeing a doctor that is acknowledging my losses aren't some random chance and should be treated / investigated.

[Anonymous]

Anonymous wrote:Hi OP, I was you about 12 years ago having suffered 6 losses and then my immune issues were uncovered. I had losses 7 and 8 on immune treatments and then we added Neupogen and my 9th pregnancy was successful and she started middle school this year. I went to CFA, Beer Center and eventually found success with Dr. Braverman. I miss Dr. Braverman so much but believe his office is carrying on well after his passing. That would be my recommendation for you and sounds like others here agree. I now have 3 Braverman babies, they are 11, 9 and 7.

Thanks for your story. My RI is Dr. Jubiz. I'm still in the process of completing testing.

[Anonymous]

Anonymous wrote:Yes keep advocating for more testing. You might want to pursue immunological testing. Have them check your levels of natural killer cells. Some people have an over abundance of them and others have a normal amount but happen to have overly active natural killer cells who mistake a pregnancy for a foreign invader and sadly, attack the pregnancy. There are various ways to treat this. Many women with recurrent miscarriage and elevated natural killer cells have found that being on a low dose of prednisone helps to keep their pregnancy being attacked by natural killer cells. I am so sorry for each of your losses. I hope you will find a path forward to an eventual successful pregnancy. What a challenging journey this is. If you aren't already working with a therapist, you may want to consider working with a therapist who provides infertility counseling. Please be kind to yourself as you persevere on your uncertain journey. My thoughts are with you, and I truly hope that brighter days are ahead for you.

This is the path that I pursued. After multiple miscarriages, I did test positive for elevated NK cells. I was prescribed IVIG before transfer (and maybe after as well). I transferred my frozen embryos to a doctor that was open to immunotherapy and had success. I'm so sorry, sending you a virtual hug OP.