How Living With Hashimoto's & Lyme Disease Taught Me To Stand Up For Myself — And My Health

Photo: Courtesy of the author / Sarah Malynn Mann
sarah mann lyme disease hashimoto

“I’m so sorry, I thought we were doing the right thing,” my dad said, clearly dealing with a lot of guilt.

It wasn't easy hearing those words, especially considering I was only 18 at the time.

At this point in my life, I had been diagnosed with Hashimoto’s Thyroiditis for five years — and had just been told I had a very serious case of Lyme disease, too. There was no doubt that my father wished he would have been better able to advocate for my health in the years in between those two diagnoses.

I was so young when I was first diagnosed, it was hard to know how to stand up for myself.

I was in 7th grade when I first found out I had Hashimoto’s Thyroiditis (sometimes also called Hashimoto's disease).

It's an autoimmune disorder that damages the thyroid gland. Hashimoto thyroiditis can be fatal — untreated, it can cause coma or heart problems — but with treatment, the prognosis is good.

According to The Mayo Clinic, "Inflammation from Hashimoto's disease, also known as chronic lymphocytic thyroiditis, often leads to an underactive thyroid gland (hypothyroidism)." It is the most common cause of hypothyroidism and most often happens to middle-aged women — but anyone of any age or gender can have it, even teenagers like me can be diagnosed with Hashimoto's disease.

People with type 1 diabetes are at a higher risk of getting the disease.

In essence, my immune system attacks my own body. There is no cure, but can be treated.

Despite being a young teen, getting Hashimoto's diagnosis was almost a relief. I'd been wearing a heart monitor and doing countless other tests for five years. At least I finally had an answer.

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Still, the symptoms I believed were caused by Hashimoto's continued to worsen.

I was angry, exhausted, depressed, and suffering from anxiety — all while on the medication that was supposed to make me better. It felt like the doctor wasn't taking me seriously.

My parents threatened me with drug testing at age 14 because of how much I was sleeping. They didn’t understand that I couldn’t help it.

None of us knew that I had been struggling with Lyme disease all those years. Nobody had taken the time to realize that. I was told it was just symptoms of my Hashimoto’s thyroiditis and I would just have to deal with it.

For instance, it is thought that people with thyroid issues should avoid foods containing gluten. According to Healthline, "While foods containing gluten aren’t the cause of Hashimoto disease, for some people, those foods can trigger an autoimmune response. This results in inflammation and tissue destruction."

So, basically, if you are on medication for your thyroid but you’re eating gluten, you may still be going backward. My doctor never mentioned this. In fact, when my mom asked if I should cut out gluten (because she’s a mother, she does her research), the doctor said no.

Everything changed when I turned 18 and found a new doctor who ordered a full blood panel so he could get a clear picture of what was going on.

This is when I was diagnosed with Lyme disease.

Lyme disease is a bacterial infection you usually get from an infected tick bite; it can also be passed to an unborn baby during pregnancy. The disease is commonly divided into three stages: early localized, early disseminated and late disseminated.

Often, if caught in time the disease can be cured with medication. If left untreated, it may attack many tissues — including the heart and nervous system — and trigger an immune response that can lead to Lyme arthritis.

According to the CDC, "[Lyme Disease] is transmitted to humans through the bite of infected black-legged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system."

While I was being diagnosed with Lyme disease, so were my mom and her sister. While we don't know exactly when or how we contracted it, learning we were all infected was alarming.

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During one of our first meetings, my doctor asked when the last time all of my tests were updated. The answer was that nobody had updated my blood work since I was diagnosed in 7th grade.

My doctor looked me dead in my eyes and said, “What the hell has your previous doctor been doing?”

Truth is, I didn’t know what my previous doctor had been doing — but he wasn't taking me seriously. I would go in with the same symptoms and he would increase my medication and send me home. My mom, who was my advocate during this time, would ask what we could do to help me feel better, and she was told it was just something I would have to live with for the rest of my life.

It was a continuous cycle: I would get worse, my medication would increase without addressing any of my symptoms, I’d be told to come back in a year. After a few appointments with my new doctor, it became clear that my previous doctor hadn’t been taking care of me as he should.

I was on a downward slope with no end or help in sight.

My mom and I were advised by my new doctor to read "Root Cause" by Izabella Wentz, PharmD. Wentz struggled with Hashimoto’s thyroiditis while getting her pharmacology degree. She did her own research, hoping to treat herself because the medical information she was given wasn’t working.

Most people who are diagnosed with Hashimoto’s thyroiditis are told there isn't a whole lot they can do for it — but they’re wrong.

While reading Dr. Wentz’s book, I realized I wasn’t alone. There are thousands of people suffering from Hashimoto’s thyroiditis that aren’t given the proper tools, and it’s not fair.

The Lyme disease diagnosis was disappointing, but I felt like I finally had a place to start and a direction in which to go for treatment. I also had other, smaller issues that were easier to work out with the help from my new doctor.

I’m currently towards the end stages of treating my Lyme disease and it looks promising. My condition was difficult to treat because it had gone undiagnosed for so long.

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According to Nikolas Hedberg, DC (which means Doctor of Chiropractic), in "The Complete Thyroid Health and Diet Guide," "The bacteria that causes Lyme disease is known as Borrelia burgdorferi, and studies have shown that Borrelia can trigger Hashimoto’s via [a process called] molecular mimicry."

In other words, the body doesn’t just attack the infection, it also attacks the thyroid gland. This weakens the thyroid and the immune system, leading to the autoimmune thyroid disorder.

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Finding my diagnosis so late really took a toll on my body and my dad blamed himself for not catching it sooner. He believed it was his role as a father to know when this kind of thing is going on in his child’s life.

It broke my heart to hear my dad, the one who had always looked out for me, saying that this was somehow his fault.

Since this experience, my physical health has improved in so many ways — my mental health even more so.

Photo: Sarah Malynn Mann

I’ve had to change a lot of things about my lifestyle to get where I am now.

I was switched to a different thyroid medication (one that doesn’t have a history of causing anxiety), I take around 20 different supplements every day because we found I had a lot of vitamin deficiencies, and I treated my Lyme disease with prescription medication for months, and now I do an herbal supplement.

In addition, I eat no gluten, no processed foods, and close to no sugar. I also do mild exercises like yoga and walking, and these things are really helping.

The girl I was when I turned 18 doesn’t even look like me now; the swelling, hair loss, and weight loss have subsided. I’ve been given new respect for my body and how I take care of it.

I've also learned the value of standing up for yourself and being your own medical advocate. You don't have to just accept one doctor's care if it feels like that care is insufficient.

It’s painful to think about where I would be in life if I hadn’t sought out other help. If you’re in pain, don’t accept it. Don’t assume that everyone feels the way you do — go get help. It saved my life in more ways than one.

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Sarah Malynn Mann is a student at the University of Florida who loves to share her story and advocate for her loved ones. Originally from St.Cloud, FL, she is a daughter, a sister and a follower of Christ. See more of her life on Instagram.