Square One

By now, you know I like to keep things light. I make jokes. I call myself chubby. I try to use what I call “grandma-esque” amounts of profanity (which translates to a few four-letter words here and there, that you’d probably throw around in front of your grandma and then hope she didn’t hear you).

So, I’m warning you now — I’m about to get deep, and a little depressing.

Last week I had another miscarriage. I was about six weeks pregnant this time, which was a week farther along than the time before. So, you know, at that rate I’ll have a baby in like 36 more pregnancies.

We’re frustrated, obviously, and scared. No one can tells us why this keeps happening. We knew going into everything that I have a clotting disorder which can cause issues during pregnancy — so I was already giving myself injections of blood thinner as soon as I found out I was pregnant. Now I have to regroup with the doctors we’re working with and come up with a new plan, because what we’ve been doing clearly isn’t cutting it.

I’m also really angry. I know everyone has their own struggles, and has to overcome obstacles to get the things they want. I was sort of hoping — for us, anyway — that all the time, money, shots and side effects, and medical intervention to get pregnant in the first place would have been enough already.

Having been pregnant, and then suddenly not anymore, twice now — I know that pregnancy will never, ever be an exciting thing for me. Sure, I get excited when we find out it worked! We’re pregnant! But then I think, “I wonder for how much longer.”

And that’s what I think every. single. day.

The first time, I had some warning. My blood tests and hormone levels weren’t doing what they were supposed to do. I knew it was coming, about a day in advance. So this time, I thought, “well, we’ll see how the blood work goes before we get too excited.” After three tests, with normal results I finally started to relax. I’d made it farther than last time. Things were moving in the right direction. And then, completely out of nowhere, it was all over.

So, what happens now?

Well, we run some more tests, and I convince some hematologists to pump my body full of blood thinner, as soon as there’s a chance there could be a bun in my oven. And obviously we’re trying again — we didn’t spend all that time, and money, and I haven’t given myself hundreds of shots to freeze a dozen (hopefully normal) embryos to just give up.

We know a lot of people who have suffered through multiple miscarriages and eventually ended up with healthy, beautiful children — we know it’s possible, and sometimes, well, shit happens. It’s a daunting thing, to try again after so much heartbreak and disappointment, but I have a wonderful husband, and we have the most supportive family and friends.

In the interim, I’ve resumed my love affair with caffeine, Coke Zero, and sushi. My three favorite silver linings.

Oh, and margaritas.

Also soft cheeses. Mmmmm.

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10 thoughts on “Square One

  1. Thinking of you… I have had two miscarriages, and I know how painful it is. Keep writing about it and give yourself time to heal. Margaritas help as does some warm brie and bread.

  2. I am so very sorry for your loss(es). Have you consulted with a reproductive immunologist? Often lovenox injections after the positive hpt aren’t enough– perhaps you should be on lovenox from cd1… and prednisone… intralipids… these are things REs don’t think of. Have you had immune testing done? These are tests that only get run by two labs in the US and are NOT included in the standard repeat pregnancy loss panels.

    To test immune system issues, a good set to start with is most importantly the NK cell assay which shows how active the NK cells are in destroying the trophoblast (early placenta) and preventing implantation/causing miscarriages as well as underlying inflammation markers such as Th1/Th2 and Tnf-alpha along with some other inflammation markers of the list (below). The inflammation markers are important because inflammation either causes NK cells to become activated, or NK cell activity causes an increase in inflammation. Therefore, even if the NK cell assay is normal, if there is underlying inflammation, implantation can be prevented when in the presence of an embryo, the immune system flairs up.

    For the alloimmune issues, one needs to tests a full HLA-panel as well as DQ-alpha matches.

    An additional issue is blood clotting problems. These are tested for under the RPL (repeated loss panel). RPL issues usually only come into play with 2nd trimester losses. So if someone does not get pregnant at all or has early losses, most likely auto- or alloimmune problems are to blame.

    How are immune system issues treated?
    Typical treatment consists of intralipid infusions for the elevated NK cells, prednisone and lovenox for the inflammation and NK cells (as well as for better egg quality, inflammation can cause poor egg quality) and Neupogen (with Dr. Braverman and Kwak-Kim at least) for the alloimmune matches.

    The RPL problems are treated with heparin and baby aspirin typically.

    Other things one can do at home are to start an anti-inflammatory diet, i.e. stop eating gluten, dairy and sugar which cause the immune system to flair up. Start anti-inflammatory supplements such as high doses of fish oil (6 capsules per day). Dr. Braverman recommends Maxi-Flavone. Limit exercise during treatment cycles (exercise causes and inflammatory state in the body). Though exercise outside of treatment cycles as over long term, exercise reduces inflammation. Use any relaxation methods. Eat/take antioxidants which reduce radical oxygen species (ROS). ROS are created by inflammation and cause destruction in the body.

    INFORMATION SOURCES
    This is a very good article that explains the various immune issues in a way that is easily understandable with pictures also to go with explanations:
    http://www.naturalgynae.com/downloads/nav6_fact25.pdf
    Here is a very good overview by Dr. Sher that explains the mechanisms by which both auto- and alloimmune infertility cause problems and how they can be treated:
    Part 1: http://www.ivfauthority.com/2011/05/understanding-immunologic-implantation.html
    Part 2: http://www.ivfauthority.com/2011/05/understanding-immunologic-implantation_16.html

    Excellent article by Caroline Coulam and Nancy Hemenway: http://www.inciid.org/article.php?cat=immunology&id=374

    Very good and clear short intro:
    http://www.rialab.com/miscarriages_prevented.php

    Dr. Sher:
    http://www.ivfauthority.com

    Dr. Braveman
    http://www.preventmiscarriage.com/Reproductive-Immunology/Non-Immune-Causes/Previous-IVF-Stimulation-Protocols.aspx

    Blood tests:
    The most commonly ordered tests are marked with a *
    For interpretation see:
    http://www.repro-med.net/repro-med-site2/index.php?option=com_content&view=article&id=6:immunophenotype&catid=2:pages-ett&Itemid=25

    or the immune system FAQ of Fertilityfriend UK

    1. Natural Killer Assay*
    The most important test
    First NK cells (effector) from blood are mixed with k562 cells (target). The sample is incubated for two hours and then it will be measured what percentage of the K562 cells will have been killed. This is done at three different dilutions 50:1, 25:1 and 12.5:1, where the first number is effector and second number is the target and the ratio is called effector-to-target ratio.
    The cut off values are:
    SIRM : 10% (According to Braverman, the lab SIRM-LV uses might be different and to compare these results with other labs, one should add 5%. This is the reason SIRM-LV has the lowest cut of point. Dr. Tortoriello uses the Rosalind Franklin lab with 15% cut-off.)
    Beer : 15%
    Braverman : 20%
    In the second part of the test it will be checked whether IVIg and/or intralipids will suppress the NK cell activity. According to Sher this is a meaningless test as it only tells what happens in test tube and our bodies are more complex.

    http://reprosource.com/reprosource_test/natural-killer-cell-activation-with-ivigintralipid-suppression/

    If you use another lab, the Natural Killer cell test you need is called the K-562 target cell test – other labs may also call it something different, but it needs to be explained using this description, because this is the one test where it’s very important to get the RIGHT test done. Also, what many of us have learned – it’s totally unnecessary to get results on how well IVIG or intralipids work to lower NK cell activity (NKa), because what happens in a lab doesn’t even come close to what happens within our bodies. Dr. Sher seems frustrated that this part of the test even exists, as it can end up worrying patients unnecessarily if it looks like these treatments don’t work or don’t work well enough. He said that part of the test means absolutely NOTHING. All that matters is getting the result of NKa in it’s native state.
    Dr.Braverman says that at least one can see whether Intralipids or IVIg work at all even if the actual values can’t be relied on.
    2. HLA-DQ Alpha Testing*
    These test the number of genetic matches between you and your husband. According to Braverman, more than 5 is a problem and can cause the immune system become over-activated.
    3. The Reproductive Immunophenotype* (panel of tests for white blood cells)
    CD3 (Pan T cells)
    T cells make up the majority of lymphocytes found in the blood. These cells are the most important in our immune system. They may be low when the immune system is weak (suppressed) and normal when the immune system is healthy. Experience has shown that women with high values may be found in infertile patients and patients with recurrent pregnancy losses.
    CD4 (T-helper cells)*
    These cells are a type of CD-3 T lymphocytes. They are the directors of the immune response. They cannot function without the road map provided by the CD-4 T Helper cells. Some T-helper cells help mount a response against foreign agents such as viruses that inhabit the infected cell. These are the Th1 type lymphocyte. When active, they are capable of secreting hormone-like substances known as cytokines that turn on the immune response removing infected cells. Identification of these helper T cells requires another test, the intracellular cytokine assay.Other T-helper cells are adapted to releasing cytokines that help in eliminating foreign organisms outside of cells. These are the Th2 type lymphocyte. They are also identified in the intracellular cytokine assay.
    CD8 (T-Cytotoxic Suppressors)*
    CD8 T cells are the effectors of many of the immune responses. They efficiently eliminate infected and abnormal cells. They are infrequently abnormal in women with reproductive issues.
    CD19 (B Cells)*
    These lymphocytes mature into plasma cells that produce antibody. In our experience B cells are frequently high normal or elevated in women with an immune cause for their infertility or recurrent pregnancy losses. We often see values greater than 12% elevation.
    CD56+/CD16+ Natural Killer Cells*
    CD 56+ Natural Killer Cells*
    Display of the CD56 protein on the cell surface identifies cells of the natural killer family. Natural killer cells are named such because, unlike T cells, they have an inherent capacity to identify foreign or abnormal self-self and effect their elimination. When their number reaches a certain level, in our experience, they are likely to be associated with reproductive failure. Interestingly, numbers that have been associated with failure may still remain within the range of healthy, non-pregnant women. To confirm suspicion that natural killer cells may be functioning too aggressively, a test, known as the NK Assay, is performed. In assay cells are actually tested for their ability to kill other cells. Natural killer cells are present both in the blood and in the uterine tissues of pregnancy. In the latter site, natural killer cells take on special functions unlike their brethren in the blood. There they assist in transforming the uterine blood vessels into vessels capable of the task of supporting the fetus and placenta over the nine months of pregnancy. Under normal, healthy circumstances, these NK cells serve a role that is unlike that of their blood borne brothers. That is until there is an infection. At that time natural killer cells assume their more recognized role in killing targeted cells. Often this response results in loss of the pregnancy. While these cells differ from those found in the blood, it is fortuitous that we can measure the natural killer activity of the cells in the blood and learn much about the activity of those within the uterus.
    CD3/IL-2R+ Cells
    CD19+/5+(B-1 Cells)
    B cells may be of two subtypes known as B-1 and B-2 cells. When we examine a second surface-displayed marker on CD19 expressing cells known as CD5, the cells are classified at B-1 B cells. They represent a class of B cells that is involved in autoimmune disorders (conditions where the body mounts an immune response against a body tissue). Women with elevations of these cells may be at risk for thyroiditis and the premature menopause. We pay close attention to the numbers of these cells when attempting to identify patients with immune-related conditions.

    4. Antinuclear Antibody Test (ANA)*
    5. Anti-DNA/Histone Antibodies
    6. Anti-phospholipid Antibodies (APA)*
    7. Lupus Anticoagulant Antibodies (LAC)
    8. Antisperm Antibodies
    9. Methylene-Tetra-Hydro-Folate-Reductase (MTHFR)*
    10. Th1: Th2 Cytokine Assay*
    http://reprosource.com/reprosource_test/th1th2-cytokine-ratio/
    Sher: Some reproductive immunologists might also test blood Treg cell concentration and/or recommend an endometrial biopsy to histolochemically evaluate uterine NK cells or assess the local TH-1/TH-2 balance. The performance of blood TH-1 and TH-2 cytokines to assess for TH-1 dominance is controversial and is of unproven value. http://www.ivfauthority.com/2011/05/understanding-immunologic-implantation_16.html
    Dr. Braverman measures Th1/Th2 ratio as well as TNF-alpha/IL10 ratio. These are inflammation markers, and can show an underlying inflammation even if NK cell activation is ok (from NK cell assay). Too many active NK cells cause inflammation and some type of inflammation also causes too many active NK cells. Hence, it’s important for the inflammation to be “cooled” as well.
    11. TNF-a:IL10 (CD3+CD4+)* Normal Range = 13.2 -30.6
    12. IFN-g:IL10 (CD3+CD4+)* Normal Range = 5.8 -20.5
    13: Other tests: fasting free-insulin, immunoglobin, anti-IgA, antithyroid antibody, thrombophilia (including factor V Leiden and prothrombin genetic mutations)

    Email me if you want more info. Sorry for the big info dump. I just know you can and will get and stay pregnant if you find a good RI to consult with. There’s basically 3 in the United States– the Alan E Beer Center in California, Kwak-Kim in Chicago, and Braverman in NY.

    Good luck.

    • Thanks for all the info. I know of two clotting issues that run in my family — Leiden Factor V and MTHFR. I’m waiting to see a new specialist ASAP. I think starting the lovenox at a higher dose, and earlier might do the trick. It’s worked for my cousin who has the same issues. Hopefully that’s all it will take, but if we keep having issues I’ll definitely follow up with a RI specialist.

  3. I am so so sorry to hear about you losses. Having been there myself, I know how hard it is. I just want to add one thing, after you start the Lovenox, you need an Anti-X blood test done to confirm you dosage is correct.

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