Hello Hashimoto’s: A Functional Nutritionist’s Own Story of Life With Hashimoto’s Thyroiditis

The delicate dance of Hashimoto's autoimmune thyroid conditionLast summer I got a good taste of why babies scream inconsolably.  (At least the babies who have ear infections.)

While on vacation with my son in Hawaii, I contracted an ear infection that made the sides of my head hot, swollen and pierced with excruciating pain; pain that reverberated from deep within my inner ear canal to my dangling lobe and kept me up through the night, wanting to wail at the top of my lungs like a crying baby.  By the time the roaming Kauai roosters crowed with the early morning sun, my jaw was clenched tight and I’d barely slept a wink.

There’s no need to feel sorry for me.  I was in Hawaii with my son Gilbert, after all.  And the good news is that through years of learning to manage my Hashimoto’s thyroiditis, I’ve also become accustomed to navigating and mitigating myriad symptoms, even when new to me.  I can now add ear infection to the list.

Hashimoto’s is not merely a thyroid disorder.  Instead it’s a summons to engage in a delicate dance, one that ultimately comes down to how we claim knowledge, awareness and care to manage our symptoms, which can be quite varied and perplexing.

Hashimoto’s is a condition I’ve personally been wrestling with for years.

In fact I was wrestling with it before I even knew I had it – held hostage in the confusion of the symptoms that seemed to plague me without rhyme or reason.  And I’m not alone.

Many people with Hashimoto’s are either diagnosed as hypothyroid or suspect they have a thyroid imbalance and yet their doctor tells them otherwise.  It’s a crime, really.  A loophole in our medical system in both the realms of diagnostics and treatment.  The statistics favoring Hashimoto’s are staggering, especially for women, and particularly after certain female milestones such as post-pregnancy onset and the hormonal shifts that happen as we age.  Approximately 95% of hypothyroid cases are in fact autoimmune thyroiditis (i.e., Hashimoto’s), and not diagnosed as such.  And what happens with an incorrect diagnosis is potentially a lot of treatment that leads to no relief.

It took me years of probing, digging through books, literature and lectures, trialing different diets, nutrient protocols and medical theories, testing one “tried-and-true” method after another, seeing a number of doctors and naturopaths, to even discover the diagnosis that would explain what was happening to and with my body.  On average, it takes about five years for a Hashimoto’s diagnosis to be determined — and this may include equally as many years of doctor’s visits, medical bills and protocols that lead to little-to-no symptom alleviation.  In other words, oodles of frustration.

In my practice, as a functional nutritionist working with many who have autoimmune conditions, I’ve often suspected Hashimoto’s as the underlying cause of symptoms absent of even the diagnostic serum antibody markers as evidence.  Time and time again, I’ve seen those antibodies show themselves on subsequent testing.  This has lead me to question even the methods of testing early on in the process of addressing thyroid signs and symptoms.  With Hashimoto’s I’ve found that often we, the women who have it, know that something is not right with our bodies before any clinical proof is available.  It could mean that oftentimes our signs and symptoms are proof enough.

For me, it was like my body was a defiant child, acting of its own accord, disregarding all my efforts and intentions.  This is what I hear from many of my clients as well.

The next step in my Hashimoto’s management was and is a continual journey to learn to regulate some level of healthy balance, one that can unfortunately become unstable with poor (for me) food choices, air travel or too much stress.  (Or apparently, crowded water teaming with teenagers after a big canoe race after the tiniest possible exposure to a food sensitivity, as I experienced in Hawaii).

Hashimoto’s is not merely a thyroid disorder.  Instead it’s a condition where the immune system is out of control, attacking itself instead of a foreigner.  Hashimoto’s is just the expression of the condition, not the root cause.  The roots of Hashimoto’s can be linked back to your digestive function, your adrenal reserves, your genetic propensity and more.

The truth is that you can learn to manage your symptoms just as I have, waltzing with the seeming lack of logic as it arises, with a greater wealth of knowledge, awareness and care held right in your back pocket.  While the answers to your woes may not come from your doctor or your thyroid hormone medication, you can still liberate yourself from the confines of standard prescription and regain influence on your Hashimoto’s health care.

Hashimoto’s is not merely a thyroid disorder.  It’s your health.  Your care.

Because Hashimoto’s affects the thyroid — the control center of heat, energy and metabolism — it’s a condition that can manifest in the usual ways that hypothyroidism does:

  • Weight gain
  • Resistant weight loss
  • Frequently cold
  • Fatigue
  • Loss of hair

Yet because the root cause of Hashimoto’s is not the thyroid itself, there can be many other accompanying symptoms.  These can include digestive disturbances such as constipation, and chronic immune challenges such as mononucleosis and acute health challenges such as ear infections — recurrent or not.  Hashimoto’s appears differently for each and every one of us.  If you’ve been treated classically for hypothyroidism but still have lingering signs or symptoms, or you suspect thyroid issues yet your lab tests are pathologically “normal”, dig deeper into your health care.  You will likely need to become your body’s #1 advocate.

Though the ear infection made me cry like a baby, it did not consume my travels or my memories.  I returned from that trip savoring the enchantment of our mother-son bond and the allure of the tropical islands.  I actually have my Hashimoto’s to thank for that insight and flexibility.  As moms, our children’s challenges often become our greatest opportunity for growth and learning.  We wouldn’t skip a beat to make sure that they get the best care and campaign for what we deem to be the fulfillment of their critical needs.  My Hashimoto’s taught me to realize that my own body deserves this same due diligence.

Hello Hashimoto’s!

 

About the Author
With a career born of a personal family health crisis and the loss of her young husband to a brain tumor in 2002, functional nutritionist Andrea Nakayama has taken the idea of food as personalized medicine from a clinical practice to guiding thousands of international clients through the online programs of Replenish PDX and Holistic Nutrition Lab.

Comments

  1. I’m having trouble finding someone to take my cies for help seriously. I have a recurrent lump in my throat and all symptoms you mention (for years). My blood tests come back negative and that’s as far as anyone goes. So I’m stuck self-diagnosing and trying to treat it on my own. If you have any trusted sources in the Montreal (Canada) area to recommend, I’m all ears — erm… eyes… Thanks for sharing your story. It gives me confidence.

  2. enhancer2 says:

    It’s good that in the internet is possible to find story like this. People should know that not everythink is that how it looks at first glance. People should talk and write about diseases. Last time i’ve read article about diagnosing Hashimoto’s disease (http://www.biomedical-engineering-online.com/content/11/1/48). These articles give me hope that there are people thanks so that life will be easier.

  3. 2plustwins says:

    So, in grasping at straws to try to figure out what is wrong with me, I re-visited reasons for my clinical symptoms and landed here. Your story is the first time I’ve heard thyroid and mono mentioned together. My GP, the endocrinologist, and now the rheumatologist all told me that thyroid is good because of one TSH test which was 1.4 and reference is 0.36 to 3.74. Yet, in 9 months, I’ve gotten mono twice (along with pneumonia twice and cystitis once), my hair is falling out, I now sleep with a heating pad, my core temp has fallen to about 97.2 deg at doctors office (even has been 95.4 at dr’s office twice without drinking anything cold), I sleep 8-10 hours during the week and 10-12 on weekends but do not have sleep apnea. Oh yes, and I’ve lost 47 pounds without trying in 9 months. Hematology doesn’t think lymphoma because my swollen lymph nodes are symmetrical, but will recheck via CT scans in March (last scans were in November). I’m now waiting for a month for rheumy blood test results, but she doesn’t really think it is lupus. But after reading this site and some other information, I’m wondering why the rheumy and endocrinologist relied only on the TSH to rule out any thyroid issues? My sister is hypothyroid. I know the weight loss doesn’t fit. I used to be very, very overweight and had a hard time losing weight.

    I feel like crap and am ready to be back to normal. Any thoughts/opinions are greatly appreciated. I belong to an HMO, so not sure where to go next since none of the specialists even thought it necessary to do more testing regarding thyroid. I didn’t know better.

    • Dr Gary Farr says:

      Hmm. You’ve obviously got a lot going on. You may want to check out Lyme. If that’s present your thyroid won’t ever recover.

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