Numbers May Not Lie, But They Don’t Always Tell The Whole Story
There is an algebra teacher in New York, long since eulogized, who is rolling over at the thought of me discoursing on anything vaguely related to numbers. She would not, however, be surprised to hear that I’m advocating we de-emphasize the importance numbers – at least when it comes to assessing our health. Medical testing provides critical information and results should never be ignored or dismissed. While numbers may not lie, they don’t necessarily tell the whole story or accurately reflect the true state of our wellbeing or how you feel. When it comes to evaluating our health and measuring our progress, we need to factor in a critical variable that labs can’t test for: our feelings.
Lab Results
Five years ago, I was experiencing a wide range of seemingly unconnected, non-specific symptoms and knew, deep-down in my aching bones and leaky gut, that something was wrong. Sound familiar? My doctor ran a partial thyroid panel. On paper, I was ‘normal.’ In reality, I was drowning. This happened several times. Only when my TSH levels blew out two years later did my numbers reflect my reality. Thanks to subsequent testing for antibodies, I got a diagnosis: Hashimoto’s.
Symptoms
I immediately embarked on the Autoimmune Paleo Protocol (AIP). I recently stumbled across the symptom tracker I created for myself on Day 1. It was my ‘before’ picture. (For a good general guide to tracking symptoms regardless of disease, go here; there are also now several tracking apps specific to Hashimoto’s.) I catalogued my symptoms (exhaustion, brain fog, joint pain, chills, rashes, weight gain, etc), assigning each one a rating on a scale of one to ten. The list was long and the scores were high – nearly all landed somewhere between five and ten.
One year later, on my first AIP anniversary, I took another snapshot: most symptoms scored four or lower. Year two sped by without a look in. But today, three years on, I filled it out again. Nearly every symptom was in the zero to two range. It’s the result of medication that’s been tweaked over years, diet and lifestyle changes, including therapy, that continue to evolve as my understanding of what works best for me grows, and a recalibration of my parameters. I choose how I spend my energy carefully. I say ‘no’ more often that I say ‘yes,’ even though I find that difficult. But I’m learning how to turn a Kate-ten into a Kate-two.
Antibodies
I have another tracker in my files – a neglected spreadsheet where, for a time, I diligently recorded all my blood work. The idea was to have all my results in a single place so that I and my doctors could see the big picture at a glance. Does anything make a conventional doctor question their career choice faster than the sight of a patient toting spreadsheets? In that data set, one number hasn’t changed. When diagnosed, my autoantibodies measured as ‘greater than 1,300’; three years later, they still do. The actual number remains a mystery, so I have no way of knowing whether they’ve gone up, down, or stayed static. On paper, I’m a mess. But in reality, I feel better than I have in years.
Weight
There’s another number I keep track of informally, intermittently, shamefully. My weight. Every ounce Hashimoto’s has gifted me appears here to stay. And as I round the corner on menopause, during a global pandemic in which sweet potato fries have played a starring role, I now outweigh my husband. But here’s the thing: I feel great. I used to be thin, sick, and sad. Now, I’m stout, hale, and fairly hearty. Since dieting of any kind (and I’ve tried them all) sends me into a flare, I have to choose: look good or feel good. I wish I could tell you that it didn’t feel like a tough choice – or a choice at all. But I’m a bad feminist who deserves to be carted off by the Body Positivity Police. I promise to go quietly. Chalk it up to fifty years of conditioning by a society that judges women on appearance. Learning to value how I feel over how I look is an ongoing struggle. I’m working on it. For now, I’m avoiding scales, trying to smile in the mirror, and buying bigger pants. Because, did I mention this? I feel great.
Trust Your Own Metrics
The internet abounds with hyperbole and false promises (surprise). Poorly served by conventional medicine, those of us within the autoimmune community can be especially vulnerable to stories of ‘cures’, remission, and recovery. When no one in a white coat is offering you hope – or even able to identify the source of your suffering – inspirational narratives can look like life-rafts. But they can also create pressure to ‘achieve’ remission, disease reversal, or declare oneself ‘cured’. In a furious quest for quantifiable results, we may risk losing sight of the bigger goal: true healing. What that looks like is different for each of us – and may not fit the broader narrative. My health isn’t a noun, it’s a verb – a fragile balancing act maintained through small, regular, necessary practices. It’s also subjective, unique, and evolving. What works for other people with other bodies doesn’t necessarily work for me. I feel well but I fail the autoantibody test. I look heavy, but my mood is light. I’ve reversed most of my symptoms but I’ll always have an autoimmune disease that requires management. My body has taken a detour and I have to chart my own path. So I’ve decided to stop trusting the numbers. And just trust myself. I encourage you to boldly do the same.
Oh Kate! THIS!!!! This is an absolute powerhouse of a post. If I had only known all of these things 11 years ago, I would have been less hyper-focused on those numbers and more focused on how I feel. It has taken a long time to get to where I am — and the metric that comforts me is a hormone test I took 3 years ago and then repeated it lately. I went from having over 60+ symptoms to 3. I seriously have nothing to complain about. Thank you for your honestly and showing us that it certainly is not all about the numbers.
Hello Aimee,
These 3 blogs are truly a blessing to read!! I have a question for you: what hormone test did you take? I have just finished some (expensive) testing: gi map, Food sensitivities test and a genetic one coming up! Just retested full thyroid panel and my antibodies are up😩. Haven’t done anything different as far as diet🤨. I eat gluten free and mostly vegetables, protein , fruit in moderation….. 🤷🏼♀️ I do feel better, then I expected. Any thoughts? Thanks
Hi Elke, it’s Kate @reallifeautoimmune here. In terms of testing, I’ve done full thyroid panel, estrogen, cortisol, h pylori, EBV, SIBO, celiac (preliminary, not invasive) and some other gut-health checks. I investigated food sensitivity testing but decided not to pursue it not only because of the cost but because of inconsistency in findings (ie the same person can receive different results from different labs). Instead, I went with the AIP, which is part lifestyle and part elimination diet. There’s a great article here which explains why elimination diets, like the AIP, are the gold standard when it comes to identifying food sensitivities. I’m sorry about your anti-bodies – it can be discouraging to work so hard and see the test results that are the very opposite of what you’d like. I’m no medical expert and everything I say is based on my own experience only, but I try to be led by how I feel. If you’re seeing a good result from the diet you’re currently eating, that’s great! It may also be worth examining whether some of the vegetables you’re eating could be contributing to inflammation and potentially aggravating your immune system. Nightshades are a big problem for me – capsicum/bell peppers once sent me to bed for five weeks! Paprika (derived from capsicum) and tomatoes are also problematic. So are soy and sesame seeds. It may seem counter-intuitive (how could VEGETABLES be unhealthy?!?) but I’ve learned that bio-individuality is EVERYTHING. And I never would have figured that out without going through a hard-core elimination diet. Knowing what does and doesn’t work for ME really moved the needle in terms of my quality of life and control over how I’m feeling. Hope that helps 🙂
Sixty symptoms to three!!! Those are numbers to celebrate with a ticker-tape parade 🙂 Impressive, as always, Aimee! Kxx