For the past two years, I have been on a secondary infertility journey—a journey that has required a significant amount of self-advocacy in order to get to the root cause, or at least rule out potential barriers to a second healthy pregnancy.
I’m no stranger to navigating health issues.
At a very young age, I was hospitalized almost every year of my life due to asthma—and each time I witnessed my mom having to advocate for my health.
But through this secondary infertility journey, I have truly re-learned how advocacy really looks.
My Journey
After getting pregnant basically on the first try, I gave birth to my son in April 2021.
I stopped breastfeeding in January 2022, and got my period back right away. With an almost-10-month-old at the time, we wanted to start trying to conceive again.
After not getting pregnant the first time, I thought it was weird—but I wasn’t mad because our wedding was coming up in July. However, I didn’t even bring tampons to our wedding because I was sure I was pregnant—and then I started my period.
We were busy for the next couple of months attending two more weddings, but after both of them, I still wasn’t pregnant.
After eight months of trying, including ovulation testing (and ovulating on the exact same day every single month) and timing intercourse, I decided to call my OB.
I was told I needed to wait an entire year, so I planned to call back in January 2023—but when I did, I was met with an accusatory question: “But can you confirm you have tested for ovulation every single month for a year?”
Being the honest Abe that I am, I admitted that I might have skipped a month or two in the beginning as we weren’t as concerned at the time.
So now, I was told to call back in April 2023.
We went on our delayed honeymoon in February, and I figured I’d get pregnant because I’d be relaxed.
Nope, still not pregnant.
In the meantime, I had been getting incredible support from my functional medicine doctor and so, when April came around, I went to my OB with a list of tests to run that could indicate infertility.
I was told they couldn’t run them and they handed me a card for IVF.
But I pushed back.
I finally got a thyroid test, though it didn’t include the antibody.
I was referred to my PCP for the other tests, who also refused to order the labs because I was “young and healthy.”
I finally got a new PCP, but not until October 2023.
I had to go through the IVF doctor for all of the other tests and lean on my functional medicine doctor to help interpret the results.
The Only Thing We Found
Most everything checked out as healthy and great.
It was only until the thyroid antibody test was run that we discovered that I have Hasimonto’s Disease, an autoimmune disease in which your body makes antibodies that attack the cells in your thyroid.
The reason it was originally missed by my OB was because a basic thyroid test only tests TSH, T3, and T4. If that test comes back “normal,” it could mean that the antibodies just haven’t yet gotten to such a bad point that they’re showing on a test. This is why it’s critical to run a FULL thyroid panel.
This is one of the greatest lessons I have learned when it comes to advocacy. It is so important to have a complete understanding of what tests are being run and what exactly they are testing for, in addition to thresholds and how those have been determined.
So, by the time a basic thyroid test would detect the high levels of T3 or T4, the antibodies are already attacking your thyroid—and this is hard to reverse. And because many doctors don’t run the full panel that includes the antibodies test, they don’t catch it until it’s already happening—and so many individuals end up on medication.
Luckily, we were able to catch the presence of the antibodies before they started to attack my thyroid to the point of elevated T3 and T4, so we have been able to try various lifestyle changes in an attempt to reduce the antibodies and avoid total disruption.
Hashimoto’s Disease is connected to fight-or-flight and stress impacts, so we worked a lot on bringing those down.
And when I say “we,” I mean my functional medicine doctor and I—because doctors aren’t trained on these practices, which is why they often resort to prescribing medication when they find complete disruption.
We will never know if it was the hormonal event of birth that caused my Hashimoto's Disease, or if it was always there and I was somehow able to conceive for the first time in spite of it—because having Hasimoto’s Disease doesn’t mean you can’t get pregnant, there is just a link to having more difficulty.
I conceived at age 29, but I spent my 20s kind of trashing my body. I didn’t sleep enough, I drank a lot, I had way too much caffeine, and I exercised too much. So, there’s a chance that I did have Hashimoto’s Disease as far back as then, but since I never had a full thyroid panel, we will never know.
Things I Have Learned
On this self-advocacy journey in the face of secondary infertility, I have learned so much.
The term “advocacy” often has a negative connotation, kind of implying that you’re a difficult patient.
But it’s your health, and you’re entitled to take ownership of it.
I used to think that second opinions were only for serious things like cancer, but really, it’s just about being informed. Even if you stay with your doctor, it’s always helpful to know that the care you get is what you want, and so being able to understand your options is super helpful.
And, advocacy is not just at the doctor’s office. It’s what happens between appointments. It’s about you keeping track of your own medical records and making sense of them, so that you can make decisions on your own because you are armed with information.
Ultimately, advocacy is about shared decision making. It’s about being educated and understanding what’s going on so you can make decisions about your life that align with your values and desires.
We have a fragmented and siloed healthcare system that is completely overwhelmed, and it simply can’t do the same for us as what it used to do. On top of that, if you live in somewhat of a medical desert like me, access to in-network care is limited. This is when advocacy becomes harder, yes, but all the more critical.
It can be so hard to navigate, and sometimes you may feel like a burden or maybe a doctor makes you feel crazy for asking more questions. But, at the end of the day, no one is going to look out for you if you don’t look out for yourself.
<Stepping off of my soapbox now>
What’s Next
While my story may be a little painful to hear because of all of the difficulties with the doctors, at least the advocacy has allowed me to make certain decisions now.
My husband, Jeff, and I have decided to give it six more months to try to conceive naturally and, if we aren’t pregnant by July, we will move forward with IVF.
I am completely surrendered if that has to be our path and I know it will be so informative and I will learn so much.
If I hadn’t carried and birthed my son, I would have done IVF already. But I know my body can do this, and so I’m still holding out for just a little bit longer.
They say to achieve a healthy pregnancy that you should have a bare minimum of 18 months between pregnancies. Some people even recommend waiting two years from the time you end breastfeeding because it is so energy -dependent and -exhausting.
Technically, this month marks two years post-breastfeeding for me. Maybe my body has just needed these two years.
In the meantime, I have made all of these positive lifestyle changes that will make a big impact in my health regardless.
And so, I believe we will conceive again when the time is right in the way that is right—and I am so proud of how I have advocated for myself and my health and the health of my future baby to get to this point.
_____
This blog post was written based on kozēkozē Podcast Episode 347: Garrett’s Fertility Journey + Health Advocacy with Esther Tran-Le as part of a series with MyAdvo.
As a reminder, Esther Tran-Le is the founder of MyAdvo, a community for women with chronic female conditions whose mission is to teach women how to advocate for themselves (and what that actually means) so they can get faster diagnoses and treatments that work for them.
If you’d like to listen to the conversation first-hand, tune in here.
Check out the other two installments of the series:
_____
kozēkozē Updates