One of the first questions I ask patients is "when did you feel your healthiest?" It's a sneaky way of orienting their current state of being to where they are in time. Was it last year? Age 15? Mid 20's? Is it now? When they were pregnant? The question forces them into their memory data bank to pull an experience of health that they can viscerally feel and it gives us something to aim for in treatment.
When I ask myself that question, it's a hard one to answer. I don't remember being healthy. Ever.
I know, I know, I know. Not a resounding testimonial from someone in the health care field where you secretly expect your practitioner to be a paragon of health. But it has has eluded me from the moment I decided to make my cameo on planet earth. Raging colic as a new born. Legendary allergies as a toddler. If there was a virus or bacteria or bug in the neighborhood - I got it. In spades. As a pre-teen, the local children's hospital knew me so well that the reception desk staff invited me to create artwork for the waiting room. I had clubbed feet - so there were braces, podiatrists, shoe inserts, physical therapy, casts, and specialist MDs. The middle school years didn't bring relief - they brought a whole different set of problems. I started having fatigue and joint pain that was crippling. Lyme's was suspected, but this was the late-80's and no one really knew for sure. When my period hit, it almost knocked me out. The pain was excruciating.
But when you don't know any differently, you simply work it out.
None of this stopped my parents from trying to provide me with a normal, suburban, Minnesotan life. So there were still swim lessons, soccer, ski club, Girl Scouts, archery, hiking, summer camp - all of it. We were at the lower end of middle class, so as soon as I was of legal age in high-school, I started working. Any luxury items that I wanted (i.e. anything other than a roof over my head or food), I was expected to pick up the tab for. By my junior year, I was waiting tables close to 40 hours a week, attending high-school, and on the varsity slalom ski team. I kept myself busy. Extremely busy. Which distracted me from the over riding sense of fatigue that was always present, the anomalous weight gain, the achey muscles, tired joints, and the ever present depression. It also allowed me to avoid home - which had been slowly imploding into a black hole for over a decade at that point. I was tired of being sick. I was tired of being tired. So my coping strategy was to work through it and be "busy" to the point of numbing myself out.
I got accepted to a college 5 states over and had all kinds of mixed emotions about going. One of the pre-reqs to attending was a physical - administriva that didn't really mean anything to me at the time. Given that this was 1995, I don't really remember the details of the appointment or even what my doctor looked like. However, about a week later, I came home to a panicked voice mail containing words such as "thyroid", "dangerous results", and "life long medication". The GP sent a prescription to the pharmacy - and that was that.
However, in my mind - it was just another thing to ignore.
I put the meds in my suitcase, and promptly "forgot" all about them. The college years brought new challenges including penicillin resistant strep combined with Epstein Barr, back pain that out force me into bed up to 5 straight days, kidney stones that required surgery, a 40 pound weight gain, and a parental divorce which the judge declared to be the worst he'd seen in 20 years on the bench.
There were multiple reasons for the decision, but I decided to do a semester abroad in Japan. My maternal grandparents had met there after WWII, one of my best friends in high school was Japanese, my brother was studying the language, and I needed field research for my anthropology major. Looking back, it was also definitely an escape strategy. 5 states didn't feel far enough from so home, but maybe a continent and an ocean would. I moved to Kyoto to study for a semester and then renewed my visa to travel and teach English for another 3 months.
I returned to the US to finish my undergraduate degree and applied to the Japanese Education Teaching Programme (J.E.T.). It was a program through the consulate where the Japanese Ministry of Education placed native English speaking graduates in the Japanese public schools alongside Japanese teachers of English. I was accepted to the program; however, the caveat being that the applicant doesn't choose where in Japan they go - the ministry does. I was placed in a village three hours west of Tokyo in a little town called Ojima-machi that’s known for its strong winds and strong women. It was me, fourteen thousand Japanese farmers, and few car manufacturing plants. It was terrifying and perfect.
Now, this is where the story gets interesting.
My days consisted of teaching English at the local junior high school, moonlighting as an English teacher at a local Subaru plant, and spending time as a "cultural ambassador" at the town hall. I was invited to participate in local mayhem inclusive of but not limited to copious amounts of sake, karaoke, tea ceremony classes, deep dives of local history, cherry blossom viewing, taiko drumming, wood block printing, and snowboarding. I dove in head first. Many of the locals at first only knew me as "gaijin sensei" (foreigner teacher); however, my nickname eventually graduated to "Ojima musume" - the town's daughter. The village embraced me as I embraced them.
True to form, my body decided to throw a wrench into the works. I'd only been there a few months before my face decided to freeze up, leaving me looking like a stroke victim. After multiple doctor visits, it was eventually the town dentist that diagnosed me with Bell's palsy due to an impacted wisdom tooth. No matter how far you go, your troubles are still with you.
This all happened as the internet was in its infancy - 1999. So there was no googling the answer, or ordering a book from Amazon, or stumbling upon a life changing blog post. If you wanted an answer, you had to source it by hunting down people who could give it to you. And I had to do it in Japanese.
At age 22, I started to explore what "healthy" even meant since I didn't really have a frame of reference. I was eating an almost strictly Japanese diet, despite the gratuitous drinking, I was still up early and physically active. I switched from skiing to snowboarding and found a new passion for a different kind of movement. In the middle of snowboarding season, the friend who had introduced me to the sport pulled his hamstring. Instead of being the season ender I had assumed, he was back up riding a few weeks later.
My question was, "how". His answer was, "acupuncture."
I didn't even know enough about it to have a stereotype of what acupuncture was - it just seemed like weird voodoo. I couldn't wrap my head around it. So my friend scheduled an appointment for me and we drove out for my first session. I didn't really have anything I was "coming for" - I was there because I had decided to embrace everything Japanese and this was simply part of it. Kuribara-sensei, the practitioner, looked to be about 25 years old - I later discovered he was in his mid-50's. He had an insatiable curiosity, a penchant for bad Japanese puns, and gentleness that I'd never encountered before or since. I could immediately see why my friend liked him. The acupuncture clinic only had two treatment tables divided by a curtain and the whole office was really just an extension of the front of Kuribara's house. So after our appointments, we would have dinner with Kuribara and his wife that often lasted close to midnight. He tried to explain my thyroid situation to me, but I didn't understand medical Japanese and the little dictionary I had didn't either. But he imparted how important it was that, regardless of anything else, I tackle it head on.
I wasn't really sure what I was suppose to be physically feeling, but I knew I liked hanging out with the acupuncturist and just took it on as part of my overall experience abroad.
And the strangest thing happened. My menstrual cramps disappeared, my fatigue started to dissipate, my weight started to creep down, my back quit hurting, and my allergies didn't leave me debilitated during rice cutting season.
It was the first time I started to understand what people meant when they said they felt good. Could this be health? I had a full year, the first in my life, where my body was coasting without getting sick. It was a god damned miracle. I had plenty of stress, plenty of booze, plenty of travel - but I was doing OK. I didn't really know what to do with myself. By then I had been living Ojima for 2 years and it was time to come home.
I left Japan in June 2001 and moved to New York City that October.
Yep - I moved to NYC less than a month after 9/11. And yep - there was a boy involved. The rational side of my brain screamed not to do it, in part because I had $250 to my name and I suspected the economy was about to tank. But my heart felt like it would be home. So I took another chance, sent my stuff C.O.D. to the boy and jumped on a discounted flight to NY.
By January of 2002, I had landed a job with a Japanese tea company and started working at their flagship store on Madison Avenue. Seemed serendipitous and right at the time. I slowly started creeping up the corporate ladder; however, when I hit the glass ceiling, I hit it so hard it knocked me out. During my time with the company, my health went into a headlong nose dive and any headway I had made in Japan disappeared. I started getting weird rashes, my joints started to become visibly inflamed, there was a fatigue that would start in my marrow and leak into every fiber of my being. I couldn’t think straight, I would burst into tears randomly - leaving me with a sense of wondering if I was losing my mind.
I was talking with one of my colleagues about what was going on and she told me to see her endocrinologist because she saw herself in my story. I made an appointment and midway through our conversation, he pulled out a wand and sonogramed my throat. My thyroid appeared in all her glory on the large television screen in front of me and looked like crystalized stain glass.
“Classic Hashimoto’s” he said. “Hashi-wuuutttt?” I replied.
I burst into hysteric sobs of joy. I finally had a name for what was happening to me. I didn't know what it meant - but when we name things, we own them. I was finally ready to own what was happening to my body. I left the appointment with a Synthroid prescription, a referral for a nutritionist, and feeling empowered for the first time since returning to the US. I wish I could say that everything magically took a turn for the better - that life has been red roses and rose wine ever since. Nope. Double nope. That’s when shit got hard.
Synthroid didn’t resolve my symptoms. The eventual addition of cytomel (synthetic T3) brought on fibromyalgia. The nutritionist looked at my food journal and told me I was lying to him because based on what I was eating, I should be at least 40 pounds lighter. My rashes got so weird that the dermatologist was calling her colleagues into the room for help. I started having migraines.
So I did what worked once before - I found an acupuncturist. Because my body already knew how to manage the needles, within two treatments my symptoms started to recede. I didn't know why it worked. All I knew was that I wanted to feel better and this was an avenue that made sense to me.
It took another couple of years of getting my resources lined up, but I decided to go to Chinese medicine school as a means to figuring out my health and owning my journey.
Admittedly, I didn’t really know what I was getting into at the time. The first day of school felt like Hogwarts - so I made the false assumption that it would be all rainbows and intuition. Wrong again. It was four years, full time, of the hardest learning and studying that I’ve ever done. I thought, “if my health doesn’t kill me, school will.” But I loved the knowledge, the challenge of discovery, and I knew while still in school that some day I’d want to teach the medicine to steward the secrets of the universe into the 21st century.
I graduated in 2009 and immediately jumped into private practice. I had done rotations at St Vincent’s Cancer Center, HIV Center, and the Manhattan VA - where I quickly learned that institutional medicine was not where I wanted to be. I wanted to be one-on-one with patients in a small setting where we had time to brainstorm, research, discover, and co-create a path to wellness. I wanted to provide them with all the things that I had been missing in my own journey. I wanted to listen to them. I wanted to hear what their unique experience of being human was like and how we could bring that experience from black and white into 3D technicolor.
It’s been a long ride, but own Hashimoto’s has stabilized where I hover at the borderline of auto-immune, but there’s still work to do.
Which I’m fine with because Hashimoto’s has become one of my most beloved teachers. It’s brought me closer to my patients in ways I could never have even imagined while forcing me to look for solutions in unexpected places. It’s taught me to forgive my body for what I initially felt was a gross betrayal but in reality is my body trying to protect me because she loves me more than I’ve loved her. Hashi’s has helped me make connections between catalyst events in my life and taught me emotional literacy that had escaped me up until my mid-30’s. I now pick battles that I can win instead of going into every fight with a vengeance. I’ve learned to ask for help and allow people to contribute to me rather than taking on the world solo. It’s been a tool that I have nothing but gratitude for.
I'm still gluten free and curvy in places I struggle to love. Nature-throid is part of my morning routine and I’m taking low dose naltrexone as an experiment to see how it shifts my antibodies. Acupuncture will always be a cornerstone to keeping my immune system purring while yoga and meditation help me decompress so that I can show up where it counts. I say “no” to things as a means of creating space to say “yes” to things that matter. However, none of these things feel burdensome - they feel like steps moving me towards the best version of myself.
Though, by FAR, thyroid disease is not the only thing I treat these days, it’s makes up a good portion of my private practice, and I’ve come to believe that thyroid disease is a feminist issue.
The statistics around it show that it is 8 times more likely to occur in women than in men. The current allopathic intervention for the dis-ease is hormone replacement therapy - synthroid, its generic counterparts or natural cousins (i.e. Armour) are substitutes for hormones that the body isn't producing. The standard treatment strategy hasn't changed in the last 50+ years. However, it doesn’t get to the root cause which is why the body is creating antibodies - that’s where the secret to reversing the disease lies. There are MILLIONS of women who go undiagnosed because standard lab tests don’t test for antibodies So we need to advocate for strategies beyond Synthroid. We need to be willing to take on our diet, our gut health, our environment, and the stress we bring on ourselves that’s directly impacting our bodies. We need to be courageous in our conversations with health care practitioners and stand-up for ourselves when we don’t feel well - just because your labs are “all good”, doesn’t mean that you’re “all good”. We need to get creative with solutions and ask for help.