What to do after you’ve had more than one miscarriage, especially if you’re also having trouble conceiving
I’m writing this post for all of you out there who have now had more than one miscarriage and want to know what to do and which tests to get. You’re sad and overwhelmed and tired of hearing about how you just had bad luck. I am writing what I wish I had read two miscarriages ago. I have since done tons of research, compared notes with many others going through this, have consulted with several doctors and I am still learning.
You are now a habitual aborter in clinical terms. I tell you this so you are not surprised when it shows up on your paperwork. Your situation is now called “repeat pregnancy loss” or “recurrent pregnancy loss,” or RPL for short.
I had a natural pregnancy and miscarriage and after 1.5 years trying. Then, I was diagnosed with a uterine septum and had surgery to have it removed. Then in my pre-IVF workup, I was diagnosed with luteal phase defect, which is treated by normal IVF protocols. Then I had another miscarriage. At that point, my doctor did genetic testing (karyotyping) for my husband and I and did other RPL tests for me. This is where I wish I had known more and demanded even more tests. However, the tests revealed that I had Factor V Leiden, which is a clotting disorder. At the time, when I got the clotting disorder diagnosis, I thought that we had finally found the problem. I’m not sure why I thought that since it was the third problem we had found. Why wouldn’t there be more? I was subsequently treated for my next three IVF cycles by taking Lovenox, but two of those cycles resulted in two more miscarriages. So we have to assume that something else is going on. I consulted by phone with another doctor who ordered a full immune work-up for me. It showed some strange results indicating that I do have autoimmune issues, but it’s not really something they know how to treat. If I had activated natural killer cells, there is a treatment for that. But, my results were on the fringe, as always. First, he told me it could be treated with intralipids and later retracted that said it couldn’t. See more here. We ended up using gestational surrogacy to build our family as I was done with my body.
When to get testing?
Many doctors will suggest RPL testing after two miscarriages. For some doctors and states, the protocol seems to be after two and for some, it could be three. If you’ve had one miscarriage, then testing usually isn’t advised because many normal, healthy women have a miscarriage, but go on to conceive just fine. However, if you’re not concerned about insurance coverage or costs, then go for it.
How much testing to get?
Here is why I wish I had known more earlier. I would suggest testing for everything that you possibly can NOW. Even if it’s overkill, I think that’s better than the alternative, which in my case is four pregnancies and four miscarriages. They seem to want to do a little testing, you have a miscarriage, then they do a little more testing, you have another miscarriage and so on. If you are worried about this, save yourself lots of heartache and test for everything now. One potential issue is money. See below for that. Another issue is that your doctor may not “recommend” testing for all of this. Too bad! Tell him you want it done. Or, if he doesn’t know enough about it or won’t do it, see a new doctor immediately.
If your doctor doesn’t suggest testing, then advocate for yourself and demand it. Each doctor has their own set of tests they like to do for a RPL workup. Some are more thorough than others. So, ask which ones you will be tested for. Do your research. If some things aren’t there that you think should be, ask about them. Many times, your doctor might just be doing genetic testing, which is called karyotyping. This would be done for both partners.
I have no fertility coverage through my insurance, except for diagnostic purposes. So, luckily most of my tests have been covered. Even if you think you are not covered, like I did, pursue it and find out. The process for me to get pre-approved took 3-4 weeks and was a pain in butt, but worth it. Even if they are not, why would you spend thousands on IVF after having several miscarriages, only to skip paying a couple hundred or thousand dollars to potentially guide your treatment instead of risking yet another miscarriage?
Something else to consider if you need to save money is to skip the karyotyping (the genetic testing) which costs a lot and get all of the other blood tests at least. I’m not saying you shouldn’t get it, but if you can’t afford it, at least get some of the other basic blood tests that are cheaper. Also, it depends on your situation. If you’ve had fetal tissue tested from a previous miscarriage that indicates a genetic problem, you would really want to do it.
Problems that could be causing miscarriage
- None – you could truly have bad luck. Especially at the 2 miscarriage stage.
- Hormonal – Hopefully you’ve already been tested for this stuff. If you’re doing IVF, then they usually test for all this before treatment. (FSH, TSH, progesterone, prolactin, estradiol)
- Physical/Uterine -Again, you’ve probably already been tested and had saline sonograms or hysterosalpinograms. If you’re doing IVF, then they usually test for all this before treatment.
- Infections – Once again, if you are doing IVF, then you’ve probably already been pre-screened for many things that could be a problem here. (i.e. HIV, chlamydia, etc.)
- Thrombophilias – These are a group of disorders that promote blood clotting.
- Immune – Thisis a tricky one. I was initially tested for antiphospholipid antibodies, but nothing else. This would involve things like autoimmune and alloimmune issues, activated Natural Killer (NK) cells, among others. Many doctors do not believe in immune issues in regards to implantation dysfunction. Read my post about that. However, lots of doctors do believe in it. From everything I’ve read and heard, this is an extremely complicated area of medicine and most REs simply do not understand it. Another reason for controversy is lack of studies. However, it’s hard to prove almost anything related to this field because there are so many factors.
- Genetic –
- You and your partner can be tested to see if you have predisposed problems. The typical test is for this is called karyotyping. This is essentially a picture of your chromosomes and tests all 23 pairs. It should be done for the female and male partner. It takes a little while to get the results, because the chromosomes have to be isolated, stained and examined under the microscope. Also, besides the standard karyotyping, there is micro-array testing that is more detailed. I think that it’s uncommon as it’s newer technology and probably more expensive. More info here and here.
- During treatment, you can do Comprehensive Chromosome Screening (CCS) testing on your embryos. See info on CCS vs. PGD testing.
- Egg Quality – Even if you get the karyotyping and you and your partner get good results, that doesn’t mean that your embryos will be genetically healthy. By yourselves, you’re fine, but when the egg and sperm get together, there can be problems and it’s usually because of the egg. This is sort of one of those normal abnormalities. Your doctor may be able to tell you whether he thinks your egg quality is good or bad. You can keep trying and wait for that one good egg or you can move on to donor eggs or embryos. Or, you can perform PGD or CSS testing on your embryos to determine if they are normal before transfer.
- Male Factor – Make sure your partner has a full semen analysis. Usually this is done prior to treatment anyway.
Products of Conception Testing
If you ever miscarry again, please try to get the “products of conception” tested. In other words, what you pass (the embryo/fetus). If it’s at home, try to save it and keep refrigerated. I know this sounds morbid and I’m sorry, but you really should know this. Then, get it to your doctor or hospital as soon as possible. If you are miscarrying at the hospital or if you’re going to have a D&C, ASK FOR THEM DO TESTING, which would be karyotyping. This could give you valuable insight as to what’s going on with your embryos or you.
Typical RPL tests
For me, this was the “RPL workup.” I think this is pretty standard. I have divided them into groups.
- anti-thrombin III
- beta 2 glycoprotein 1 ab, g, a, m
- Factor II
- Factor V Leiden
- Protein S (total)
- Protein S (free)
- Partial Thomboplastin Time
- Thyroid Stimulating Hormone
- Antiphospholipid Antibodies: anti-phosphatidylserine (IGG/M/A)
- Antiphospholipid Antibodies: anti-cardiolipin (IGG)
- Antiphospholipid Antibodies: anti-cardiolipin (IGM)
- Antiphospholipid Antibodies: Lupus anticoagulant
- Rh blood type – you need to know whether you are Rh positive or Rh negative
- Karyotyping (both partners) – this is the typical testing that they will do
- Natural Killer cells – Some women I know were tested for this as part of their initial testing, which is an immune problem. However, as I understand it, the test that most doctors order is useless because they don’t check activation. The standard for this test is the K-562. So, don’t bother getting it unless you get it done right.
- Homocysteine levels
- Vitamin D – It is thought that a deficiency of Vitamin D may lead among other things to ovulation disorders. Go here and here for more information.
- Celiac Disease – Because of some GI problems I was having, someone suggested to test for celiac. Initial bloodwork showed that I had it, but later an endoscopy showed that I did not. If you have no reason to believe you have celiac and don’t have severe GI problems, then don’t get yourself tested for this. More info here.
- Carrier Screening – This is like karyotyping, but more in depth. I had a friend that went through many IVF cycles and many losses and had all of the testing referenced here done including karyotyping. However, her doctor decided to delve deeper into testing her for genetic problems. They did carrier screening on her through Good Start Genetics and discovered two problems. After many years, she finally had a reason.
Here is the full immune workup that I got
Keep in mind that many doctors do not believe in immunological problems related to infertility, including my RE. Camp #1 says there’s not enough research. Camp #2 says it’s very complicated and many doctors do not understand it. Also, it’s been hard to prove with so many variables, but now with embryo chromosomal testing, conclusive research will be possible.
To have this done, we consulted via phone with another doctor, which turned out to be a mess, but I’m still glad I had the testing. See more information on that here.
- Antiphospholipid Antibodies: ACA (Anti-Cardiolipin Abs)
- Antiphospholipid Antibodies: APA (IgG, IgM, IgA, αPS, αPC, αPl, αPE)
- Antiphospholipid Antibodies: Anti-β2 Glycoprotein I Ab’s
- NK (Natural Killer) Activation with IVIg (K-562)
- HLA panel – 1. HLA, A, B, C, DR, DQβ 2. DQα RIA (DQ Alpha Matching)
- RIP (Reproductive Immunophenotyping)
- TPO (Thyroperoxidase Ab)
- THAB (Thyroglobulin Ab)