Postpartum Recovery Fears And Diagnosing My Mystery Postpartum Illness

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Before having my son, I had a lot of fears over the dreaded postpartum period. After listening to the Birth Hour podcast for months, and questioning any other mom who wanted to share her trials and tribulations with birth and recovery, I thought I knew all the possible birthing outcomes. And I felt prepared because of that. Nothing could surprise me.

Sure, every birth is different, and my delivery was no exception.

I was 11 days late, and then I labored for 34.5 hours with contractions nearly every minute. I had no specific birthing plan (to avoid disappointment), but I wasn’t following the normal progression of labor, and that was not a story I’d heard before. By the end though, I had a beautiful baby boy and that was all that mattered.baby feet

The postpartum recovery period, on the other hand, started off as expected. I received a couple of stitches, and I was sore, but nothing out of the ordinary.

By the time of my first post-hospital discharge check-up, I had mostly healed and was feeling pretty good about my postpartum recovery progress. Except for one nagging issue. My legs.

Each morning, as I collected my son and walked down the stairs to start our day, my legs felt so weak that I had to grip the wall as I made my descent. At first, I didn’t question it. I thought it was part of my postpartum body soreness. I considered that my muscles could be tired. But then I asked some friends, “Did this happen to you?” It wasn’t a story I’d heard before, and none of my friends seemed to have experienced it either. So, what was going on?

When I was five months postpartum, I called my doctor with my concerns. After describing my leg weakness/soreness, the doctor seemed stumped, but he assured me we would get to the bottom of it.

He ordered several blood tests –Lyme disease, rheumatoid factor, blood count, and others. There were six blood tests to rule out the obvious causes of my symptoms. When the test results came back, I logged into my online health account to see that I tested negative for all tests with one exception. I was positive for autoimmune disease.

After some online searches and help from Doctor Google (never a good idea), a wave of panic set in.

The diagnosis meant my body’s immune system was attacking its own healthy cells. I may not be a doctor, but that sure didn’t sound good. I contacted my doctor right away for an explanation, and I scheduled another appointment. Okay, it was autoimmune, but there are dozens of different types of autoimmune diseases.

What exactly was I suffering from? Six more blood tests were ordered, but they offered no further explanation. I was referred to a rheumatologist.

When I saw the rheumatologist, she was pretty sure I didn’t have anything she could help with. I was once again met with uncertainty, but she ordered five more blood tests. I logged into my online health account to see the new lab results. Normal, normal, normal… wait, there are red numbers. And there I saw the word I feared, “abnormal.” I searched online, and it was my thyroid. All signs pointed to hyperthyroiditis. I was next referred to an endocrinologist.thyroid resultsI was very nervous about meeting with the endocrinologist. I had never had thyroid problems before. How bad was this? An ultrasound of my thyroid revealed that it was very large, and scarred.

From the scarring, it appeared my body had been attacking my thyroid for some time. But the endocrinologist was not convinced this had anything to do with my legs.

The hope was that I might have postpartum thyroiditis. It is uncommon but thought to occur with pregnant or postpartum women who have an underlying autoimmune thyroid condition. Because of the immune changes in pregnancy or childbirth, a flare can be triggered. Postpartum thyroiditis can resolve itself within 12-18 months of giving birth though, so that was my best case scenario. Except I didn’t fit the normal profile. I wasn’t suffering from any of the typical symptoms, just the mystery leg issue. And I was experiencing hyperthyroiditis much longer after birth than was typical.

Three more blood tests were ordered to check for specific thyroid diseases (like Graves disease). Each of them came back negative. I had to return in a few months for additional testing to see if my levels changed and if I had progressed further into hypothyroiditis. If so, I would be tested again in 3 months time to see if my levels returned to normal. It was a “wait and see” game.

It may help to explain the difference between hyperthyroiditis and hypothyroiditis.

Hyperthyroiditis is when your thyroid is overactive, producing too much of the hormone thyroxine. Among other things, this can accelerate your body’s metabolism and cause a rapid or irregular heartbeat. Hypothyroidism is when the thyroid is underactive, which can cause issues such as obesity, joint pain, infertility, and heart disease. With postpartum thyroiditis, you would start hyper, go hypo, and then hopefully return to normal.

At my follow-up appointment, my lab tests confirmed that I had gone hypo. It wasn’t great news. No one wants to gain weight after they have a baby. But, we would see what the next labs revealed. Going into my third appointment, I noticed that my legs weren’t really bothering me anymore. After almost a year, the soreness and weakness were gone. When my thyroid levels came back as normal after that third appointment, I breathed a huge sigh of relief.

I recently returned to the endocrinologist for another ultrasound and additional lab work. Nine months after my levels had returned normal, and my thyroid was still quite large and scarred. I was advised that it might never return to normal size. But my lab work came back normal again — my thyroid was functioning as expected. It was good news. Though my endocrinologist was still skeptical of the connection between my hyperthyroiditis and my leg issues, at 21 months postpartum, my legs were just fine. It seemed an unlikely coincidence.

I have no idea what might be in store for me with my autoimmune disease. But as someone who already has congenital heart disease, I’m no stranger to the unknown. I count myself lucky in the grand scheme. Life is a fragile thing. Each day, I am grateful. baby kissing stairsSometimes we forget how serious a toll pregnancy and birth can have on our bodies.

After those first six weeks of recovery, I thought I had escaped my postpartum recoovery period relatively unscathed, but I was wrong. After some self-advocating, meeting with a doctor, two specialists, and having 20+ blood tests, I was finally back to myself. It was a great feeling. My medical bills? That’s not so great, as you might imagine.

The endocrinologist offered parting words for my future. If I decided to have another child, I could very likely experience the same thyroid issues and symptoms, and there was no predicting if my levels would return to normal that time, or stay hypo postpartum. It was a risk I would have to take. But at least this time, if I decided to go through it all again, it would be a postpartum risk that I knew. And knowledge, as they say, is a powerful thing.

Did you experience any postpartum illness or a mystery illness that was difficult to diagnose? I’d love to hear your stories, and how you managed your recovery process.

 

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