Guest Blog Post: Driving the autoimmune automobile

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I met Julia when I was working at the library’s circulation desk as a freshman at Indiana University of Pennsylvania. She stopped by to visit a friend of hers who was one of my coworkers who would later become a friend of mine, too. Fast forward less than four years later. I was living in Washington, D.C., and my roommate, an acquaintance from college, was one of Julia’s best friends. I heard so many wonderful things about her through my then-roommate and now dear friend. I’m glad to have crossed paths with Julia through a couple of friends and now through our healthy lifestyles, and I’m happy to introduce you to her, as well! She’s a West Chester, Pa., native who works in higher education administration and is lucky enough to globe trot for a living. She has three nephews (Henry, Nate, and Spencer) whom she adores.

Imagine your body as a car. You’re pressing on the gas, but you’re not going anywhere.

Or imagine driving across country on empty, and you can’t even reach the pedals.

On one hand, I was relieved that my seemingly disconnected symptoms weren’t all in my head – that there was a reason I felt as if there were curtains over my eyes, my physical appearance had changed, and why I no longer had the physical strength to even hold myself up.

On the other, it meant learning to manage an autoimmune disease that can be difficult to control.

Spinning out of control

Your thyroid is a funny thing. It serves as your body’s command center, controlling, among other things, your heart, brain and kidney functions, and metabolism. With a fully functioning thyroid gland, you don’t even know it’s there or what it’s doing to keep you alive. But an abnormal thyroid can potentially throw your body into a complete tail spin, a.k.a. a thyroid storm.

Graves' eye disease

Julia presenting Graves disease symptoms, which include goiter (enlarged thyroid), bulging eyes (Graves eye disease), thinning hair, and swelling around the face

That was me in 2009.

I found myself in the hospital being treated for what was thought to be a heart attack. It was at that time when I learned of my Graves disease diagnosis. My thyroid couldn’t be controlled by medication or radiation therapy and has since been removed. I now have hypothyroidism.

Dealing with a thyroid condition can be hard. Some days are great, and others you’re just “blah.” Even while medicated, your thyroid hormone levels can fluctuate to the point that your body is in overdrive (overactive) or running on empty (underactive). One of the lasting effects of hypothyroidism is weight gain and depression. They advise you to be more active, reduce your stress, eat a balanced diet, and get more sleep, all to counter these effects.

But, if you don’t have the physical or mental stamina to be more active, how do you reduce stress?

And your body is so out of a normal rhythm, so how to you achieve a more balanced diet and more sleep?

And on more days than not, you feel down. It’s easier said than done.

Waking up

My thyroid condition has owned me for the past couple of years and has had a negative impact on my physical and mental health. But it was two years ago, when I was 28, when my doctor gave me an ultimatum and one last chance to get my blood pressure down before putting me on medication.

That was a wakeup call.

Despite trying to make the right lifestyle choices, like eating a balanced diet and being active, I have something that is working against me and all that I do to get healthy. I have come to live with this reality and be patient with my transformation. It was (and still is) easy to beat myself up and resign to the fact that I can’t achieve my desired physical results and maintain a positive outlook.

Taking the wheel

Regular blood monitoring, a balanced diet, exercise, and a supportive community have all been critical in this journey.

Diet: The diet piece has been huge for me. There are many foods we consume everyday that inhibit the absorption of a thyroid hormone replacement, which include the following:

  • Gluten
  • Soy-based products
  • Certain vegetables like cauliflower and Brussels sprouts, which are favorites of mine!
  • Caffeine
  • Alcohol

Limiting or eliminating, in some cases, these foods has made a significant difference in my overall health and mental clarity. It has made me more conscious of what I am putting in my food at home and less inclined to eat out, because I don’t know if something will trigger me. With a thyroid condition, you tend to have an adverse reaction to sodium (I absorb the salt and my body swells), so that’s another reason to avoid food you don’t know how is made.

Physical activity: Being active is another key component to reducing the negative effects of any autoimmune disease. Getting to the gym has always been a chore for me, but I have discovered activities that are “fun” like hula hooping and spinning. I am getting a significant workout, which feels less forced, so I am motivated to go back again. And I do! I purchased a Fitbit and that has been helpful for me in tracking my activity and making sure I meet my personal daily activity goals. I put on my Fitbit every morning as I take my thyroid medication – I go nowhere without it!

Julia’s recommendations

If you are suffering from muscle weakness, fast or slow heart rate, anxiety, large weight fluctuations, swelling, lack of mental clarity, bulging eyes, thinning hair and nails, sensitivity to cold/hot, it may be hard to pin point what is going on. A simple blood test can eliminate the risk of a thyroid disease, and I encourage you to get tested if you are experiencing any combination of the above symptoms. Ask to have your TSH, T3 and T4 counts read.

Another thing I learned is to be your own advocate if you have been diagnosed. There is no treatment that works for everyone, and it involves a combination of drugs and the right diet which works for you. Do your research, pay attention to your body, and have an open dialog with your doctor. I caught it just in time, but, looking back, I noticed many of my symptoms evolving months before.

I still have more ground to cover and continue to learn how best to control my levels, but, in these two years, I have eliminated the risks associated with high blood pressure and lost 40 pounds. I have fallen off the wagon many times, especially when I didn’t see results. But, if there is one thing I have learned through this process, it’s that every small positive adjustment matters, because it becomes a behavior that you can then build upon. And patience. Patience with yourself and the process is crucial.

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Julia before (left) and after (right) treatment

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2 thoughts on “Guest Blog Post: Driving the autoimmune automobile

  1. Loved reading this! It’s great for Julia to let her voice be heard, and to have someone like you, Anna, to help her do it! Love you both!

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