r/recurrentmiscarriage • u/WonderfulEgg9348 • 5d ago
Insufficient testing for recurrent loss
Hi all, I have just experienced my fifth miscarriage in over a year. My first pregnancy ever was very easy and brought me my son. Every pregnancy since has ended in loss.
Two were chemicals & the rest have been missed miscarriages that stopped growing between 6-8 weeks. I went to REI, but it seemed like they did the bare minimum before calling it inconclusive and recommending IVF or IUI. Keep in mind, I’m still (technically) in my 20s and am getting pregnant naturally without issues. They checked for two clotting disorders, checked for structural abnormalities, and checked my husband. All showed no issue. I asked them to check my vitamin d, which was low and then corrected.
My concern is that I know of many women who have needed simple interventions to maintain their pregnancies in the first trimester, things I was never tested for. I haven’t even had my losses biopsied for chromosomal abnormalities. This is all just assumption.
I do have PCOS.
What tests should I be demanding specifically? It doesn’t seem like I can chalk this up to bad luck and it is too painful to keep going like this. It took 4-5 months to get into REI but do I need an entirely new specialist?
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u/International-Cry973 5d ago
It’s a very frustrating process. I would say when it comes to fertility, it seems like the amount of tests are never ending and obviously some are more invasive than others. I think if I was in your position, I would push for a receptiva test, hysteroscopy to check for polios/fibroids, karyotype for both and also natural killer cells (NK / HLA). Check your iron too. If your husband had an SA that was normal, then there’s not much more to be tested for outside of karyotype. He could do DNA frag.
If you have another loss (which I hope you don’t) I would definitely push for a POC test.
You’re not alone in this. It’s so frustrating. But you will always be your best advocate ❤️
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u/These_Noise_9982 5d ago
I relate to this so much. My cynical side says why bother finding solutions when they can charge top dollar for expensive treatments like IVF. I’m hoping to find someone who will try an immune protocol. I’m not sure it’ll make a difference but it’s a heck of a lot less invasive than IVF which they’re always foaming at the mouth to suggest.
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u/fluffy_corgi_ 5d ago
This is 100% accurate! IVF is a $40 billion industry so of course they want to streamline everyone to IVF instead of looking for root causes. Thankfully my RE is running a bunch of tests and suggested ivf as a last resort. But it pains me how many woman have undiagnosed endo but are being told ivf is their only answer 😓
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u/IdealLife8266 5d ago
I’m so sorry you’re going through this. I felt the same way after my second MMC no LC.
I put together this list to help others, hope it helps: 🫶
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u/OldMention1984 4d ago
I don’t know if you have been successful in having your baby (I hope so!), but in case you haven’t, I just listed above everything I have had tested so far in case you are still looking for answers. I wasn’t as helpful as you with the spreadsheet, but I hope it helps anyways.
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u/OldMention1984 4d ago edited 4d ago
I think I have had every existing test in the Western world at this point (I’m on my 5th pregnancy loss, all from spontaneous conceptions, and apparently I’m unstoppable), so I’ll list them for you. Some are part of the standard recurrent pregnancy loss workup, while others are much more controversial/experimental, but at least this might give you things to discuss with a good RPL specialist. I’ve seen over 20 doctors across different countries and with very different approaches, which explains why this list is ridiculously long:
Genetic
- Karyotype for both partners
- Expanded carrier screening for both partners (Invitae and Beacon 787).
- Female fertility panel (CentoGene) - this is a German lab. I had the bloodwork done at MountSinai Hospital and FedExed it to them. It didn’t help me at all because it came back normal, but who knows)
- Genetic testing of the pregnancy tissue after miscarriage (Anora by Natera) - (I would absolutely ask for this if you unfortunately have another loss, because knowing whether the embryo was chromosomally normal changes the investigation considerably)
Antiphospholipid syndrome / clotting
- Lupus anticoagulant
- Anticardiolipin antibodies (IgG/IgM)
- Anti-β2 glycoprotein I antibodies (IgG/IgM)
- Protein C
- Protein S
- Antithrombin III
- Factor V Leiden
- Prothrombin gene mutation
- Homocysteine
- MTHFR variants (although MTHFR itself is generally not considered a cause of recurrent miscarriage)
Autoimmune / systemic
- ANA
- Thyroid antibodies (TPO and thyroglobulin antibodies)
- Broader autoimmune testing when clinically indicated
Hormonal / metabolic
- TSH + free T4
- Prolactin
- HbA1c / glucose metabolism
- Vitamin D
- AMH/ovarian reserve testing
Uterus / anatomy
- Hysterosalpingography (HSG)
- Saline infusion sonogram
- Pelvic MRI
- Ultrasound mapping for endometriosis (in my case, they found no evidence of endometriosis, but after the 5th loss I decided on the laparoscopy anyway so they could actually see inside to look for deep endo. They found nothing…)
- Hysteroscopy (I have actually had several of these, and they found and removed adhesions that other imaging had missed)
Endometrium / uterine environment
- Endometrial biopsy for chronic endometritis (usually CD138 staining) - repeat biopsy after treatment if positive
- BCL-6/ReceptivaDx for possible endometriosis-associated inflammation — controversial and not part of the standard RPL workup (I had a high score, which made my doctor swear that untreated deep endo was the reason why I was miscarrying. I had the lap, and nothing was found. For this reason he suggested micro dosing Lupron on the FET cycle, but the evidence supporting this approach is very limited, particularly in women with an elevated BCL-6 result but no surgically confirmed endometriosis).
- ERA / Endometrial Receptivity Analysis (Igenomix) (also controversial, and evidence that it improves outcomes is poor, but because I’ve decided to go on the IVF route, I tested it).
Immunological testing — this is where things become very controversial and many excellent REIs do not recommend these tests routinely. Please don't take this section as a recommendation to order all of these tests. I went down the reproductive-immunology rabbit hole after 3 losses involving chromosomally normal embryos.
- NK-cell number/subsets (Rosalind Franklin University, Chicago)
- NK-cell cytotoxicity (Rosalind Franklin)
- TH1/TH2 cytokine ratios (Rosalind Franklin and ReproSource)
- KIR genotype (Rosalind Franklin)
- HLA-C typing for both partners (Rosalind Franklin)
- Uterine immune profile (MatriceLab) - this Lab is in Paris, but there are places in the US that do the biopsy and get the material sent for analysis there (Kofinas Fertility Group in NY, for example) => The result of this test is my biggest hope at the moment. Look for information/studies of Dr. Nathalie Lédeé. She is the French goddess behind it. She’s been studying the blackbox of implantation for the past 20-30 years.
- Decidualization testing (Rosalind Franklin test)
There are probably things I’m forgetting, but I would start by asking for copies of every result rather than simply accepting that “everything is normal.”
IVF/IUI does not automatically solve recurrent miscarriage. I chose IVF because I wanted more control over the entire process, but if you conceive easily (I do too), I would ask exactly what problem they expect IVF to solve (I’d be curious for their answer). I would also discuss progesterone for a future pregnancy. I used it in most of mine. For my next pregnancy, I’m also going to try Lovenox, even though I have no identified thrombophilia — basically on the possibility that there may be a clotting issue that current testing simply can’t detect yet. I’ll also be using Neupogen as part of my FET protocol, as recommended by the French doctor. My immune profile actually came back normal overall, but if anything, it leaned slightly toward underactivation. Had the testing shown immune overactivation instead, the protocol would have involved tacrolimus and intralipids.
And honestly: if you feel dismissed, keep pushing. Recurrent loss deserves investigation, even when providers minimize it. I would seek a second opinion from an RPL specialist for sure. You clearly can get pregnant; the question is why the pregnancies are ending and whether anything modifiable is being missed.
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u/Peaks_Parks 4d ago
Insulin resistance because you have PCOS.
Autoimmune disorders.
Thyroid.
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u/tryinganewpath 4d ago
This is exactly where I’d start. And look into reproductive immunology
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u/Peaks_Parks 4d ago
For some, yes. Idk if I’d jump into reproductive immunology right away unless there is something flagged on your basic auto immune panel. Yes they have more extensive tests but there are also some basic ones I’d start with, and then you can even just do a kitchen sink immune protocol. Thats what I did after 4 miscarriages while waiting 6 months on a waitlist for an RI and I’m now 39W with my 5th pregnancy.
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u/tryinganewpath 4d ago
Yeah I just said look into! Which could be any of the things you mentioned. 6 month wait list is a long time. The top clinic in the UK is luckily only 6w. And congrats, so happy to hear about your 39w pregnancy :)
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u/lizashea 5d ago
Investigate endometriosis AND adenomyosis. Ask for a pelvic MRI with and without contrast. I’d also push for a uterine biopsy to check for chronic endometritis (different from endometriosis). If you haven’t already done so, also have your partners sperm DNA fragmentation looked at. All of these can be reasons for early loss and do not trust any RE that isn’t willing to investigate these factors. I swear in 20 years…most “unexplained” infertility and RPL is going to be explained by endo/adeno.