My Autoimmune Diagnosis – A Dark Comedy. Part 4

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This story is continued from here.

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My endocrinologist said she expected me to continue to see her or another doctor ongoing. I told her I’d received a referral to someone who specializes in this area. She asked who, I told her, and her immediate response was that’s the only doctor she’d allow me to see aside from herself.

My new doctor was well-regarded as a progressive, well-informed practitioner. The staff prides themselves on long visits and really getting to the bottom of conversations and issues. I’ve been very happy.

Treatment Based On Research

The doctor told me, at Harvard, where she studied, they only rely on large-scale, proven research. Sounded more like a brag than useful information at the time, but I accepted her credibility and her reputation. I don’t have a medical degree or license, and I appreciate the time she and her staff spend (and charge for), often going directly to search research databases while we’re in session.

At the same time, as a male with autoimmune condition, I’m a statistical outlier. The office is all female employees, and I don’t think I’ve ever seen another man in the waiting area.

No Research

Over time, we’ve discussed more and more of the details of my condition, my highly active lifestyle, and the possibility of modifying diet to reduce inflammation and immune response. My doctor said those are all great ideas, if only there was good, statistically valid research in those areas. I asked her what incentive exists in the medical and pharmaceutical establishment to prove drugs aren’t necessary and healthy food is “medicine”. She shrugged her shoulders, agreed, and smiled, apparently seeing the irony herself.

One Script For The Future: You’re Sick

After 5 years as their patient, they have declined to test all my thyroid numbers as suggested by more progressive practitioners. Furthermore, they’ve declined to retest my antibody counts. “Once you’re autoimmune, you’ll always be autoimmune. There’s no point testing those.”

For a “healer” to be so committed there’s no cure or hope (do you see the same trend I see?) is unacceptable to me.

My new doctor agreed to test for those antibodies, and he ordered a more complete thyroid panel.

Progress?

Fantastic news!

My thyroid peroxidase antibody count fell by 2/3, from the “Out Of Range” level to the “Equivocal” level. A drop of 5 more puts me in the “Normal” range.

My new doctor says these numbers can fluctuate, so it’s not certain, and we’ll have to see future test results. He also confirms he’s seen numbers as high as 900, so my low-double-digit scores are as good as it gets while still having a diagnosis.

I know:

  • gluten, dairy, and soy are implicated in autoimmunity,
  • I have a diagnosis, which is nothing more than a name they give a set of symptoms,
  • I’ve always had digestive issues,
  • when I avoid certain ingredients I don’t have digestive symptoms,
  • eating these ingredients reliably causes issues.
  • I decline to further inflict on myself ingredients that have bothered me since childhood.

What Now?

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Hi, I’m Dylan Cornelius.

I’ve spent my career helping Fortune 500 companies build custom products and change the lives of their employees and customers.

Now I teach people everywhere how to get great results, manage change, and change their lives, with product development, continuous improvement, and agile management practices of the best businesses.

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I was the first son of a new teen mom. By the time I was 2, she was a single mom of 2, living with her parents and working a retail job as a cashier at a pharmacy. She remarried by the time I was 4.

My stepfather adopted me and my brother. He worked in construction 7 days a week to support the family.

Throughout my childhood, I learned firsthand the value of hard work. I was first in my family to do many things, and I’ve often done them the hard way: college on student loans while living on campus at UC Berkeley, an MBA while working full time. Later in life I ran a marathon, then 4 more and counting… I’ve learned multiple definitions of ‘healthy diet plan’, first as I lost 50 pounds, then again after I earned an autoimmune diagnosis.

In graduate school, I concentrated in “Management of Innovation” — after all, I worked in Silicon Valley, and I’d grown up just down the road! It was there I learned we don’t have to work so hard, (but it helps)!

We don’t have to rely on trial and error or hope, or just settle for less than we really want.

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