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Dying to be Heard – a Tale of Hashimoto’s

By December 18, 2017 No Comments

I’ve had thyroid problems since I was about 12 years old and still seeing an endocrinologist at a pediatric hospital. If you saw a picture of me back then, you’d see an insanely enlarged neck, the “lump” being at the exact spot where my thyroid was crying out for help.

Like many, I took synthetic thyroid hormone for many years (10 years, to be exact), and was always just led to believe that it was “hypothyroidism” and that “my TSH levels were fine so there’s no problem any more.” Still, I had all the classic symptoms: exhaustion, dark circles under my eyes, heart palpitations, depression and crippling anxiety, weight fluctuations, etc. — and all as a young person! As I saw my peers run circles around me, I always thought, this can’t be right.

I hopped from doctor to doctor in search of answers, but was met with skepticism and criticism every step of the way. When I asked for additional labs, the answer was “No.” When I said I suffered from debilitating sleepiness, the answer was “There’s nothing wrong with you — everything checks out.” And when I explained how I was in constant pain, the question was – and I quote, without saying this lightly – “What do you want me to say? That you have cancer? Is that what you want? There’s nothing wrong with you.”

I was a constant mess of confusion, frustration, hopelessness and helplessness. I felt like nobody would listen to me, and I was dying to be heard.

Unfortunately, I know that my story is not unique. All too often I hear reports of doctors condescending, disregarding, and overlooking folks who complain of Hashi’s symptoms — writing us off to be crazy, or hypochondriacs, or hypersensitive. And frankly, while I know that doctors are only human and they’re operating within the limits of an injured healthcare system (in the U.S. at least), it simply isn’t fair. We deserve better.

About 10 years into taking medication and going through the motions of my life, I finally found out I had Hashimoto’s. The sad thing is though, I actually had to point out my unspoken diagnosis. During a routine appointment, my doctor handed me a copy of my lab results and summary of services statement. I saw “Hashimoto’s” written on the sheet, without any other context.

I had never heard of that, so I asked what it was. My doctor waved her hand and said “Oh, nothing — don’t worry about it, it’s not even a big deal.” I said, well if it’s a diagnosis that may help explain why I’m feeling badly, then I want to know everything I can about it! She reiterated her statement and told me to just keep taking my medication because my lab levels were within a “normal” range, and there was nothing that could be done about Hashimoto’s anyway.

Luckily, my spidey-sense kicked in and when I got home that evening, I immediately began researching this mystery word and trying to figure out what it meant. Turns out, it was a spot-on match to my symptoms. It also explained the most recent bout of symptoms that I had gone through, which went against the conventional wisdom of my 10-year-running thyroid diagnosis of being “hypothyroid” in that my symptoms at the time were much closer to those of being “hyperthyroid” (this makes sense because Hashi’s alters between hypo- and hyper- symptoms).

On one hand, I was elated that I finally might have figured out what the heck had been going on with me all of those years, and I felt incredibly validated through my own research and discovery. On the other hand though, I was mad. Why had nobody listened? Why didn’t any doctor care? Why didn’t MY doctor make a bigger deal of this, tell me I had an autoimmune condition (which I also didn’t understand what that was at the time), and help me get things back on track?

Needless to say, I resolved to never see that doctor again.

Once I was empowered with the knowledge that I had Hashimoto’s, I sought out a practitioner in my area who specializes in treating Hashimoto’s, and who actually studied with Dr. Kharrazian, whose book, Why Do I Still Have Thyroid Symptoms?, I read in about 3 nights.

It was with this doctor who I finally found a listening and understanding ear, and someone who completely and totally validated my experience throughout the previous 10+ years. In essence, someone finally heard my cry for help, something I wish more doctors would take the time to try and do.

Today, I am living a thriving life and have never been happier — I just got married to my beautiful wife, honeymooned in Hawaii, and moved to a new city, all without symptoms. I’ve also been completely off of my synthetic medication for 5+ years and my functional MD reports that my labs are within perfect functional ranges.  

Along with an AIP diet, healing my gut and working with a talented doctor, I attribute some of my healing success to finally “being heard.” You see, I believe the thyroid is a part of the body that contains so much wisdom and really carries the weight of our (in)ability to be heard, to speak our truth, and to express ourselves.  When we suppress this, or when we continue spending time with people (yes, including doctors) who refuse to listen to us, we are only making things worse for our thyroid.

It’s easy to dismiss the rigamarole that I had to go through to gain an understanding of what was really going on in my body, to just sweep it under the rug and never look back. But honestly, I think it’s important to remember that difficult time because it helps me give back to others who are going through something similar.

So my message to you is: Whether it be asking for more information from your current practitioner, hopping to new doctors until you find one who resonates with you, or asking for help or support from a loved one, I encourage you to not stop until you are heard — your health depends on it and your thyroid will thank you.

About Mitch:

Mitch is a health coach and the guy behind the blog, Instinctual Wellbeing, and can also be found on Instagram at @mightymorphinmitch. He believes that along with following a whole foods diet, humor, self-awareness and self-love are keys to healing autoimmune disease and chronic illness. Originally from Florida, he now lives in Chicago with his wife and two cats.

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