Things my fertility clinic never told me

Listen up, Ladies. Because in the last two weeks I’ve learned something I wish I would’ve learned months ago. And the fact that I wish I would’ve learned it months ago makes me lucky. Because there are likely so many of you who would put themselves in the whish-I-would’ve-learned-about-this-years-ago category.

And maybe this isn’t news to some of you. But it’s been eye-opening, life-changing news to me – and to my sister who has struggled with infertility for years. So if there is one thing you read and pass on about infertility today, I hope it’s this. Though we all know that we search, scour and devour about a hundred links and articles about infertility a day. I won’t tell if you won’t.

So here’s where it all sorta starts:

Two weeks ago, I thought I was accidentally pregnant.

I say accidentally, because my husband and I were not even trying last month. The Dragon Lady had me on a strict regimen and even stricter orders to stop trying to conceive for 3 months so that we could work to get my egg quality up. So to prevent yet another miscarriage, my husband and I used the same birth control methods dumb high schoolers use during the time I figured I was ovulating.

And when I started spotting exactly a week before I was due to get my period, I, and the Dragon Lady, were both convinced it was implantation bleeding. Spoiler alert: it wasn’t. But go along with me here for a second.

The Dragon Lady was not happy about the fact that I was likely accidentally pregnant .

“I tell you I make you so fertile. But eggs not ready yet!”

I, of course did nothing but stare at her blankly, because what was I supposed to do now? magically unimpregnate myself?? To further freak me out, she started going back over my paperwork and medical history and was asking me more in depth questions about my family history. Like if I had a family history of stroke or heart attack.

And I do. My dad died of a heart attack when he was 41. Yes 41. Now, he also smoked a lot, ate terribly, had one of the most stressful jobs someone could have, and generally didn’t take care of himself.

And so for most of my adult life I have religiously exercised and made sure to eat healthy and maintain a healthy stress level. And because of that, I assumed that other than the naturally high cholesterol that I likely inherited from him, his health issues would not, could not, be my own.

I also told the Dragon Lady about my sister who has had unexplained infertility for four years. But because she has never gotten pregnant and I’ve managed to get pregnant multiple times but miscarried, I assumed our issues were completely unconnected. That we just happened to be two related sets of different unlucky statistics.

It’s so easy to look back and connect the dots now. Especially when those big dots are not surrounded by the noise of the other, everyday dots.

But back to the Dragon Lady. After hearing about all of the above, she yelled out,

“You have autoimmune problem! You. Dad. Sister. All autoimmune problem”

No, no I told her. I couldn’t possibly. Because my RE had already tested me for everything under the sun. And all the tests had come back normal. The lupus anti-coagulant test. The anticardiolipin test. Beta 2 glycoprotein. TSH. Prolactin. CMP. Glucose tolerance. All normal.

And I proved it to the Dragon Lady. I pulled out the piece of paper in my purse that had all the test names written down and she looked at all of them and said,

“This only some!”

And she went on and on about how REs aren’t doing the right tests and they aren’t correctly diagnosing all these women that she sees in her own practice, and I won’t try and repeat it word for word because it’s too important.

And also, because really, there’s one thing I want you to know. And this thing is something everyone needs to know regardless of whether or not they have a family history of heart attacks or a sister who is infertile:

The tests most REs run are only the tip of the immunological iceberg.*

The Dragon Lady then handed me a list of all of the tests that need to be run to rule out an autoimmune or blood clotting disorder. And this list is long. The tests my RE had run were only four out of the more than twenty on that piece of paper.** She also gave me a lot of medical literature about what these tests determine and how they should be treated to achieve and maintain a pregnancy. And more often than not, it’s just one or two medications that need to be prescribed. But of course, first, the issues need to be identified.

Now at this point, I thought I was likely pregnant. And I also think the Dragon Lady sure does know a whole lot more than any OB or RE that I’ve talked to. So right away, I called my RE’s office and spoke to a nurse practitioner. I asked if she would order a blood pregnancy test, which she did. And then I asked her to order the tests the Dragon Lady had just opened my eyes to. To that, she said no, that they had run all of the tests that they typically run.

I asked her why they don’t run more tests that are known to signal autoimmune and blood clotting issues. And she said, “Because our practice doesn’t treat those.”

I couldn’t believe what I was hearing.

Almost in tears, I explained my entire conversation with the Dragon Lady and that I felt I was going to lose yet another pregnancy unless they could run those tests. And that I didn’t care if they treated them or if someone else treated them, I just needed to know before it was too late – yet again. She agreed to order four of the tests.

The first test result to come back was the hcg test. Negative. I wasn’t pregnant. And for the first time ever, a negative pregnancy test made me breathe a sigh of relief.

The other four test results took almost two weeks to come back. Again, they were only four of the more than twenty tests on the list from the Dragon Lady. But sure enough, one of those tests, the antinuclear antibody test, came back positive.

I have abnormally high levels of antinuclear antibodies.

At this point, I know that could mean a number of different things ranging from just a slight inherited abnormality to lupus, and it could very well be the reason my AMH is so incredibly and unexplainably low. And I’m betting that my sister will have the same abnormal results. But I am not going to get ahead of myself. There’s not a ton that can be determined from just that one result. So I’ve been referred to Dr. Kwak-Kim in Chicago who will be able to run the rest of the tests and tell me what’s going on.

Dr. Kwak Kim, as I found out only after googling her name, is a reproductive immunologist and is one of the few doctors in the country who will accurately test for and treat (in conjunction with my local RE and OB) all known autoimmune issues. And because of that, she’s also incredibly hard to get into.

My appointment isn’t until Mid April.

But in the grand scheme of things, having to wait two months pales in comparison to having another miscarriage, or having years of repeated, unexplained miscarriages.

And I honestly think that had I never started seeing the Dragon Lady, and had I never had that accidental pregnancy false alarm, I never would have known any of this. And it’s a scary thought – not just when it comes to fertility, but to my overall health.

The Dragon Lady seriously saved my ass. And now I feel like it is my duty to make sure other asses are saved.

So maybe you know all this, because you’re more informed and farther along in your journey than me. But if this is news to you, and, like me, you haven’t gotten a lot of answers thus far, you might think about having a conversation with your RE or OB that starts with “Are there other tests that can be run?”

*I am not a medical professional and I work nowhere near the medical field. I’m just an impatient person who has spent a lot of time searching for answers. So my advice is not meant to be medical. Only personal.

**If you want to see the document with the list of tests, please email me privately.

10 thoughts on “Things my fertility clinic never told me

  1. My new acupuncturist just did the same thing with my family history! Bit late now, we’ve used donor eggs. Hope the doc in Chicago helps you out! I certainly wish we’d known sooner, could’ve saved a lot of heartache!

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  2. I’ve been curious personally what other tests could be done. Even with my new pcos diagnosis there’s tests my re isn’t running that should be done. They won’t test more until I have RPL which I don’t yet and hopefully won’t. But I do know I have a positive ANA test (like you) but negative lupus. Thanks to arthritis testing from years ago. I’m really curious as to what else is associated with a positive ANA.

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  3. This is so important and so many RE’s will tell you it’s crap. But after so many failures there is just no way this is crap. I’m actually being treated for NK activity for my next cycle. For those that can’t get into an RI, an immunologist can also work. This is a good list of the tests they will run or you can ask them to run:

    http://www.repro-med.net/testing

    MTHFR gene polymorphism
    PAI-1 gene polymorphis
    Protein S activity
    Protein C activity
    Leiden Factor V
    Prothrombin gene mutation
    Factor XIII gene polymorphism
    Antithrombin III activity
    PTT
    anti-nuclear antibody screen
    anti-ss DNA antibodies
    anti-ds DNA antibodies
    anti-SCL antibodies
    anti-histone antibodies
    anti-thyroid peroxidase antibodies
    anti-thyroglobulin antibodies
    Thyroid stimulating hormone
    free T4
    free T3
    vitamin D
    CD2 or CD3 prolactin
    HLA A,B,C,DR1,3,4,5, DQ Intermediate Resolution for both
    Test Number: 167096 CPT Code: 81370
    Expanded anti-phospholipid antibody panel
    NK cytotoxicity assay
    Th1/Th2 intracellular cytokine ratios
    Reproductive Immunophenotype
    Leukocyte antibody detection panel

    There is also a great group on FB to discuss immune related infertility. And lastly, Dr. Sher does some great webinars on it. His most recent immunology webinar he answered all of my questions!

    http://haveababy.com/watch-webinars

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  4. Following your story and wishing you luck. It’s frustrating when it feels like our doctors let us down and we lose precious time! Would love to hear more about your journey and the options are you pursuing. Best of luck.

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