An Undiagnosed Autoimmune Disease Caused My Miscarriage

I was overjoyed to get pregnant on my very first try in September 2012. I felt like I had conceived some “super baby” because I had pregnancy symptoms almost immediately—two days after conception and 10 days before I could even take a pregnancy test.

At the time, my husband and I had been ready to have children for a few years. However, chronic and mysterious health issues kept us from trying. I had been diagnosed with an unspecified autoimmune disease two years earlier. I was given the label of inflammatory arthritis because my doctors were confident that I had an autoimmune disease, but they could never pinpoint which disease it was.

After two years of treatment, my symptoms had improved and my doctors mentioned that people with autoimmune disease often experience remission from symptoms during pregnancy. After much deliberation, I weaned off of my meds and was given the green light by my doctors to get pregnant.

As the pregnancy progressed, some of my symptoms disappeared and others got much, much worse. I was plagued by severe fatigue and nausea. As tired as I was, insomnia and restless legs kept me awake every single night. I felt terrible every day but I didn’t care because I was deliriously happy.

We were privileged enough to witness two sonograms of our baby. Each time we were awestruck to hear the loud and healthy heartbeat. I even saw a high-risk o.b. who told me my baby was healthy and everything was going great!

We tried to keep our news to ourselves for as long as possible. After 10 weeks, we felt the risk of miscarriage was low enough and revealed the news to our friends and family at Thanksgiving. Our family was thrilled, as we would have been the first of our siblings to have children.

That next week I started bleeding. A night in the emergency room confirmed we miscarried, I was 11 weeks and 6 days along. Visibly shaken, my husband’s face fell as he grimaced in pain. Grief hit him immediately but I was in still in shock. I was given prescription strength Tylenol and sent home.

I sat in stunned silence later that day while I watched my devastated husband struggle to break the news to our family and friends. It hurt so much to see him heartbroken and I felt like it was all my fault.

In all of my years of chronic pain, I had never experienced anything close to what my body endured the following day. Contractions ripped through my body and my water broke promptly upon returning to the ER. I was completely unprepared for labor as nobody warned me it could happen and the painkillers they provided during the first ER visit did not even begin to touch the pain. The same ER doctor that we had seen two nights before gave me morphine and helped me “give birth” on what would have marked my 12th week of pregnancy.

The doctor tried to reassure me by telling me that miscarriage was very common and often caused by genetic abnormalities. My intuition told me that my case was different. I explained to him that I suspected my autoimmune disease was at fault. I remember saying “It would be great if they could find out what’s wrong with me!” Unbeknownst to me, the ER doc sent the fetus in for an autopsy and testing at Mayo Clinic.

Grief and post-partum depression followed as I tried to heal physically and emotionally. The autopsy and Mayo testing revealed I had a genetically normal and healthy baby girl. My high-risk ob agreed with me: There was a good chance my autoimmune disease caused my miscarriage.

I wanted to get pregnant again immediately, but not without taking some sort of preventative measure. My doctors failed once more to find a more specific diagnosis or a pregnancy-safe treatment to keep my immune system in check. That’s when I was referred to Mayo Clinic.

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Mayo Clinic diagnosed me with Hashimoto’s diseasean autoimmune disease that attacks your thyroid and causes hypothyroidismin March 2013. Hypothyroidism and Hashimoto’s antibodies increase the risk of miscarriage, as a fetus needs optimal thyroid levels to grow.

My doctors had failed to diagnose me before because all of my previous thyroid testing showed levels within normal range and my doctor explained that he couldn’t test for Hashimoto’s without abnormal thyroid results. I later found out that normal thyroid levels are not a good indicator of how well your thyroid is actually working.

I know am not alone in thisa fact that has both comforted and infuriated me. My baby was not the only one to die. According to Mayoclinic.org “About 10 to 20 percent of known pregnancies end in miscarriage. But the actual number is probably much higher because many miscarriages occur so early in pregnancy that a woman doesn’t even know she’s pregnant.”

If an estimated 12 million people are living with undiagnosed thyroid disease and women are five to eight times more likely than men to have thyroid problems then how many of those miscarriages are caused by undiagnosed or undertreated thyroid disease? How many miscarriages could be prevented by both educated patients and doctors?

I am not grateful for my loss by any means, but I realize that it had to happen this way. If I hadn’t lost my baby, I would have never gotten referred to Mayo. The miscarriage encouraged Mayo to take me seriously and look for the correct diagnosis.

I would have sacrificed anything to protect her. Instead, her life had been sacrificed so that I could get the right diagnosis. It shouldn’t have to happen this way. Babies should never have to die for their parents.

Tricia Barendregt
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  • Hello, once you were diagnosed with this thyroid problem, what was your treatment- a thyroid supplement? You’re story hits home way too closely. I’ve had 3 doctors tell me something different about my thyroid- only one seems to think I needed to supplement and i know he is right. I’ve miscarried twice this year. My doctor now found an autoimmune lipid issue… I would just like to know what happened next, what did you do/ take/eat, etc…. <3

  • Thank you for sharing your very sad story. I too have an undiagnosed autoimmune disease, and had a miscarriage at 16 weeks. After they did an autopsy on the fetus, a girl as well. They said she was healthy and they did not know why she died. That this was common! I’m still suffering both from the grief and this undiagnosed autoimmune disease/disorder. I’ve just been told I have fibromyalgia and chronic fatigue syndrome. And suffer a lot of physical pain. As far as i know and what I’ve been told those are only symptoms of an autoimmune disease/disorder. I’m desperatly trying to get to the root of this problem for starters to live a better quality life and secondly to try for another baby. Yet I’m scared to try again because the miscarriage tore me apart. It left me so devastated. But after reading your post I really felt relief. You gave a purpose to your tragic loss and that inspires me. I understand all that you have been through and go through. And I am so sorry for your loss. But really thank you for sharing your story, as I honestly connected to what you were saying and you have given me a different way to look at it all. I will use this miscarriage to be my purpose to get the right diagnosis and treatment. If you give something tragic in your life a purpose, then it is not in vain. And it helps to heal. Thank you!

    Caroline

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