Be Your Own Health Advocate

Several years ago I was diagnosed with Celiac Disease via blood test and endoscopy, and I recently received a diagnosis of hypothyroidism. But it wasn’t a doctor who came up with the idea to test me.

Before my Celiac diagnosis, I had suffered from stomach aches for years. Then one of my stomach aches didn’t go away for three weeks. It was so painful that walking sometimes hurt. Doctor after doctor – and nothing. Then my mom called me. “Have you heard of this thing called Celiac Disease? It sounds a lot like you.” I told my new primary care doctor that I wanted to be tested. He referred me to a gastroenterologist who ran the test. I got a phone call from him while (ironically) eating gluten-filled crackers. “Ummm….you’re highly positive for Celiac Disease. Your blood levels are off the charts. We need to do an endoscopy.”

And there you have it. I may not have been diagnosed if I hadn’t insisted on getting the test.

I have suspected for a while that I may have a thyroid issue, so I finally pushed to get the proper tests. There is a single thyroid test that doctors generally do. If that comes back abnormal, they do a full thyroid panel. However, I did my own research and learned that many thyroid conditions are going undiagnosed because doctors aren’t running the full panel to begin with. Despite my complaints of tiredness, slow metabolism, and weight gain, my primary care physician has always said that my thyroid was normal due to my results of that initial test. However, this past June when I went in for my yearly visit I promptly insisted on a full thyroid panel. When they explained the single test I said, “No, I want a full panel.”

Sure enough, the following week I got a call from the head nurse who said, “Ummm….so that initial test came back fine….but you had some abnormally low numbers on your panel….we’re going to give you the name of an endocrinologist.”

Always wanting to be my own advocate, I looked up the specific tests within the panel and what my low numbers might mean – hypothyroidism characterized by:

  • Fatigue (check)
  • Weight gain or increased difficulty losing weight (check)
  • Hair loss (check…my shower drain is depressing)
  • Cold intolerance; cannot tolerate cold temperatures like those around you (check)

All of these things could be what I call “normal people problems.” Or they could be thyroid related because I have Celiac Disease. I must always consider the possibility that these types of issues are related to my autoimmune condition.

So off I went to my new thyroid specialist who told me, “From the test that your primary care doctor ran, I don’t think you have a thyroid issue. But let’s double check.” Fast forward through two more tests (which took another five months – ugg) – my doctor called me. Hypothyroidism. We are currently working together to find the right dosage of medication in order to help my sluggish thyroid function better.

At this point, I am thrilled to receive a diagnosis. I have begun treatment, and while I realize that it will take time to get my medication dosage right, I am so excited to feel better.

The moral of the story – Be your own health advocate. Do your research. If you feel that something is wrong, don’t settle for doctors telling you that you are fine. If your doctor doesn’t want to give you the proper tests, find another doctor who will. 

Be well, my friends.

Do you have a story to share? Please leave a comment below. You never know how your story might help someone. 

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2 thoughts on “Be Your Own Health Advocate

  1. Thank you for posting this as it’s so true we need to be our own health advocates. This resonates with me, recently diagnosed with a 2nd autoimmune disease and determining I’ve gone undiagnosed for 15 years. Persistence = answers

    Like

  2. Pingback: Celiac Awareness Month with Tasty Meditation | tasty meditation

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