Listen to Your Heart
No, seriously, shut up and listen. Your body’s trying to tell you something.
I’ve struggled with fatigue for years. Shortly after moving to Nashville, my primary care doc tested me for adrenal insufficiency and vitamin deficiencies but came up blank and referred me to a specialist. I saw two endocrinologists who both attributed my symptoms to Hashimoto’s autoimmune thyroid disorder, despite the fact that my numbers hovered in the healthy range. They both suggested I get tested for depression and I left their offices in tears and muttering curses. Depression is a valid and critical diagnosis and while I have moments of depressive or anxious thinking, I’m one of the most self-aware people you’ll ever meet (I credit years of therapy and spiritual study; I wasn’t born this awesome.) I couldn’t shake the feeling that something was physically wrong but could never put a finger on it, so I just accepted the diagnosis of mild Hashimoto’s and lived with fatigue for half a decade.
In spring of ’21 something shifted and I started feeling worse. More tired, more foggy, very cranky, and my executive function and decision-making declined. It started affecting Piper and my relationship with her, and I reached out for medical help. We discussed long covid, early menopause, my thyroid issues (my blood tests were still in the green.) In the absence of any physical illness or injury I finally said “Maybe I really am struggling with depression?” I answered page after page of mental health questions and then had a personal consultation. The therapist said “You only marginally qualify for clinical depression and under different circumstances I’d say you’re okay. But medication might help if you want to give it a shot.” I didn’t hesitate to say yes. I was humbled, miserable, and willing to try anything.
I took antidepressants for roughly 18 months (a pediatric dose, which made my best friend and me laugh our heads off.) My symptoms didn’t change a bit. I was still tired and couldn’t get my shit together, but I no longer cared that I couldn’t get my shit together. Things were a little “brighter” at first and I felt a little more buoyant. But I eventually stopped taking the fluoxetine because the benefits didn’t outweigh the cost, and I’d come to accept the fact that I was just perpetually tired and it was okay. I no longer judged myself for what I’d come to view as an inherent character flaw. “It is what it is.”
This March I started feeling really shitty again. Extra tired, my shoulder calcification came back, I just felt like garbage. My outdated smart watch kept congratulating me on reaching my cardio goal each day when in reality I was doing practically nothing (it was three years old and I figured it just wasn’t tracking my stats very accurately.) I ran all the blood tests for thyroid and menopause and everything came back just fine, except one thing I’d never tested before, my parathyroid. It was the first time anything came back in the red and I was absolutely thrilled. I finally had something concrete to take to a doctor! I started reading up on parathyroid disorders and got referred to a new endocrinologist, which I was told could take 6-8 weeks. Deep breath and waiting patiently.
In April I started getting headaches almost daily. I get a migraine once a year or so, but these started hitting as soon as I woke up and lasted half a day, despite pain reliever. My concentration and memory went to shit and I was feeling kinda’ floaty, like my balance was off and I needed a V8 (you have to be a certain age to get that reference!) I couldn’t shake the feeling that something was really wrong and I just kept praying for that referral to the endo to get pushed through, because that parathyroid level was the only tangible piece of information I had.
On Tuesday, May 5th I collapsed in a near-faint at home. I was walking from the kitchen into the living room when I got extremely light-headed and had tunnel vision, and I glibly said “Nope, I’m goin’ down.” Piper looked up from the couch to watch me reach for the doorway and lower myself to the floor. I controlled my breathing and didn’t pass out, and calmly asked her to get my pulse oximeter from the bathroom, which we’ve kept since Covid. I honestly don’t remember what my pulse and oxygen levels were, only that they weren’t too alarming. I stayed on the floor for a few minutes while Piper and I discussed what to do. I didn’t fully pass out and recovered fine; going to the ER would be expensive and pointless. I drove myself the six miles to work because at least then I’d be monitored by other adults and around the corner from the hospital. When I got there I just felt super shitty. My blood pressure and heart rate were both high but I attributed it to anxiety from not knowing what the hell was going on. Once I sat stationary for a bit everything stabilized and I felt fine, and I moved forward with my day.
Despite my calm response, I was scared shitless. I talked with several friends with medical backgrounds and we agreed that I needed to keep a close eye on my symptoms. We also all agreed that going to the ER was only helpful if I was presenting symptoms when I arrived, which was unlikely. If you know me at all, you know that simply waiting and monitoring is not in my nature. I ordered blood labs for electrolytes, metabolic function, and glucose, all of which came back within normal range. This was both a relief and a frustration. Frankly, I present like a very healthy person who’s struggling with mental health disorder, and every blood test and physical exam makes me look like a hypochondriac. I needed either a psychiatric evaluation or concrete data to prove that something was wrong.
So I dug up my gift cards and discount codes and ordered a new smart watch.
Now I know that a smart watch is not a clinical device, and should not be used for diagnosis and treatment of disorders. But I’m also pretty damned sure mine has saved my life.
During the last two weeks I’ve monitored my heart rate, oxygen saturation and deviation, and downloaded a nighttime recording app. And every night for two weeks my heart rate decreases and then spikes in correlation with my oxygen levels plummeting, and I snore like a chainsaw. My watch doesn’t give specific readings but we’re guessing my o2 is dropping to around 85% three or four times a night. During the day my heart is working much harder than it should, hitting fat-burning zone when I casually walk and hitting peak cardio when I play with the dog. Last week I was at my desk and my heart rate went up to 105 (my resting heart rate is 55, so 105 is moderate exertion for me…but I was standing still.)
But I digress.
Welcome to years of undiagnosed and untreated sleep apnea, and the strain it puts on one’s heart. Who knew?
Piper knew. She’s been telling me for two years that I snore, but I assumed it was just when I drank or had a cold. And I figured she was being a dramatic teen. “God Mom, your snoring is soooo baaaaaddddd” (insert eye roll here.)
My old smart watch knew. Although not very specific, it was subtly telling me that my heart was working harder than it should have been. I just wasn’t interpreting it properly.
My body knew. It’s been trying to tell me, I just wasn’t reading the signals clearly. The yellow flags of daytime fatigue and brain fog, the orange flags of headaches and vertigo, and the final red flags of near-faints and racing heart. My body had to scream to get my attention.
And let’s face it; I knew. Without fully understanding, I just plain knew that something was wrong but lacked the evidence and information to prove it. Now I’m looking back to guess how long I’ve had it, and that’s what concerns me. The more I read and learn, the more I believe it’s been most of my adult life. At the very least, it’s been ten years. I’m wondering if I ever had Hashimoto’s in the first place. All the symptoms are the same; daytime fatigue, brain fog, irritability, headaches. And it’s not really anyone’s fault it went undiagnosed because let’s face it; this healthy, skinny woman in her 40s is not the typical apnea patient. And here’s the icing on the cake; sleep apnea can negatively affect parathyroid hormone. I don’t think my parathyroid is the cause, I think it’s a symptom. Right information, wrong interpretation.
So now what?
Fortunately I have a fantastic new primary care doc who listened, heard, and respected me. Our primary focus is reducing the apnea and increasing my nighttime oxygen levels before further harm is done. She got me in immediately with the Sleep Center of Mid Tennessee. I have a consultation next week to determine what type of sleep study I need (at-home or in-clinic, most likely the former) and we’ll go from there. Our secondary focus - and the thing that’s been giving me writers block and keeping me away from this keyboard - is the cardiologist to make sure my heart’s doing okay. Whatever happened on the 5th was scary, and I honestly haven’t felt the same since then. I’ve got some concerns but I’m trying not to let them distract me from this beautiful life that I’m living. I’ve had a few moments of overwhelming fear and I’ve ridden those waves but not let them drag me under.
I’m tired. It’s taken me an incredibly long time to write this, both because my brain wanders and because it’s a lot of emotional processing. I don’t know what’s coming next but I’ve made Piper a commitment, there’s a plan in place, and I’m making changes and choices to reduce my risks. You know it’s all about the Before and Afters, and what we learn in between. There was before I hit my kitchen floor on the 5th, after I got the diagnosis last week, and I learned a whole lot in between. I learned I have to be assertive and advocate for my own health. I learned it’s safe to admit being vulnerable and scared. And I learned that when your heart tells you something you should listen, and listen well. It won’t lead you astray.
Y’all stay safe, strong, and beautiful. ♥️