Once upon a time, shortly before the shadow of COVID swallowed the world, I was sitting in my endocrinologist’s office, legs happily swinging off the exam table as I waited to see how my thyroid hormone levels were doing.
The doctor knocked, we exchanged pleasantries, he took a peek at my lab results and said:
“Hmm, it looks like your Hashimoto’s antibodies are still high.”
“Wait–I have Hashimoto’s?” I demanded. “I thought I just had hypothyroidism!”
“Oh, yes. You have Hashimoto’s Thyroiditis.”
He then continued talking, like he hadn’t just dropped the bomb that I had an autoimmune disease.
And I like this endocrinologist.
This diagnosis was, admittedly, quite a shock, as I had been joyfully taking my glorious Levothyroxine for well over a year by that point, not to mention this visit was the third or fourth time I’d seen this specialist.
It was kind of a big deal, since having one autoimmune condition predisposes you to multiple autoimmune disorders. So far, I haven’t stumbled into any others, but we’ll see if my luck holds. I hope it does!
Unfortunately, this ridiculous scenario is all-to-common in the hypothyroid community.
So what happened?
Misdiagnosis after misdiagnosis after misdiagnosis.
First, the exhaustion: in my very early twenties, I was a perpetually exhausted pigeon–I attributed it to working 40 hours a week, my volunteer work on the side, often taking an overload of college classes, and then eventually student teaching.
There were so many excuses to explain my exhaustion, and I blamed myself (a lot).
By the time I became a third-year teacher, though, I started to notice that something was wrong with me; my teaching compatriots managed to find the energy to occasionally put on makeup in the morning (our English department ESPECIALLY was filled with gorgeous, perfectly manicured women–I was so envious), go out with friends after work, and didn’t zombie their way through each day.
Then, light emerged from between the clouds: A co-worker mentioned that she had a thyroid condition and that her magical little pill made a world of difference in her energy level. I vaguely remembered that my mother had mentioned a similar condition. So, I did what any reasonable woman-who-trusts-most-doctors would do, stayed off of WebMD, and scheduled an appointment over at Kaiser.
I expressed my concerns to my doctor. I did the blood lab test. He took a look at my results–hmm, it appeared that I “was wrong” and it was all “in my head.” All of my labs were totally within the “normal” range–except he only tested my TSH, which is FAR from a complete thyroid panel. He told me to “just exercise more.” That would “give me more energy.”
The more I exercised, the worse I felt.
I started running. I took up jazzercise. I attended yoga classes. I could never do it consistently because I just. didn’t. have. enough hormones to function as a person, but I simply didn’t know it.
Years passed.
My symptoms continued to mount; I attributed my disgusting feet to not being able to afford pedicures. I would scrub layers of dead skin off my face every time I showered, blaming the cheap products I was using. I started gaining weight, even though my diet hadn’t changed and had actually improved. I couldn’t just walk the weight off with tracking my CICO, like I’d successfully done a few years earlier–everything extra stuck, and nothing came back off. When I stopped taking birth control pills (which masked the symptoms earlier in my life), my periods became irregular. When I couldn’t conceive, I didn’t understand why (which in retrospect was a blessing in disguise, I am SO GLAD that didn’t happen–I love being child-free!)
It was hell.
I was so exhausted that I’d sometimes wish that I’d get into a car accident on my way to work–not because I wanted to die, but so I’d have the excuse to sleep for days in a hospital bed without judgment–my own or the world’s. Yes, it was that bad (and often why this condition is confused with depression).
I stopped talking about my exhaustion on any regularly scheduled doctor’s visit because I accepted it as normal.
And then, one day, my earlier wish came true: I got into a car accident–luckily a minor one, a hit-and-run.
It was the best thing that has ever happened to me.
The doctor I lucked into seeing for my muscle aches and pains ran some standard lab tests (I was a few months past when I should have had a physical). Everything was in the normal range. But I noticed my TSH labs were riiiiight on the cusp of being out of range.
It only took ten years.
I mentioned in our follow-up that my mother had a thyroid condition and that my TSH was almost out of range. She decided to run another blood test.
That second test, one week later, showed that, for the first time, my TSH was finally out of range–high enough that a doctor actually took me seriously.
I would only find out later that the range most doctors use to diagnose this is FAR too wide and that I hadn’t experienced the “optimal” levels (where, you know, you function like a normal person) in YEARS.
This doctor prescribed me a magical little pill, 25mcg of Levothyroxine, and warned me it was just the starting dose–I would probably have to adjust it several times over my life.
And then I slowly became a human again, Warm Bodies style!
Taking levothyroxine, for me, was life-changing; while some people struggle without a combination pill of T4/T3 (you do have multiple treatment options, though doctors usually start you on pure T4) I was lucky. It is so important to my daily functioning that the very, very few times I’ve forgotten it (work trips, smh), I’ve walked literal miles to a pharmacy to get my hands on it, my prescription allowing me to buy it out-of-pocket. And it’s cheap for American Medicine–I can buy a bottle of these generic pills for around $20, so if you have a prescription but no insurance, I can tell you it is WORTH it to harass a pharmacist–even if “your insurance won’t cover it right now” or you have lost your coverage. But I digress.
My dose settled in around 50mcg in Knoxville. Life moved along and I was a person again. I felt great.
Until… one day, I realized, I didn’t.
My symptoms were back. They were better, but back. So, I went back to my doctor, got another blood test. She told me my TSH was around a 2.8, well within the normal range, and to go on my way.
The symptoms slowly grew worse.
Luckily, we were just about out of Knoxville; we sold our house, moved to the beach, and I promised myself that I would find a specialist, one who listened to my symptoms and treated me as a whole patient, not just my lab numbers.
Seeing an actual endocrinologist with a good online-rating (namely for listening to his patients) was, once again, life-changing.
One more blood test and one consultation later, he’d upped my meds to 75mcg, then later to 88mcg when I still wasn’t feeling great, and now, at long last, 112mcg.
Was he clumsy in the handling of informing me that I had Hashimoto’s? Sure.
I forgive him, though, because without my full medical history (that’s on me, I forgot to call my other doctor to have them passed along) he didn’t realize no one had ever run a test for thyroid antibodies.
So, that’s how I was eventually, correctly diagnosed with Hashimoto’s. And I lived happily ever after!
Epilogue
I sometimes wonder about how different my twenties would have been if that first doctor had just run a simple blood test for thyroid antibodies; the presence of them alone would have at least made me feel less like a lazy, unmotivated person. If I had known, I would have continued going in for blood tests to discover exactly when I could start taking this magical little pill.
If I had known, I would have found another doctor.
It’s not perfect; I still struggle with having less energy than most folks, and I’m sure I always will. However, I’m learning to pick exercises that don’t leave me an exhausted, sick-to-my-stomach puddle at the end of them–after all, the best exercise for you is the one you can do consistently!
I am slowly but surely shedding the extra pounds that this condition helped me gain (though real talk, I’m sure some wine also helped add some there xD).
Intermittent fasting (16:8 most days!) has been wonderful–it also helps make sure I don’t accidentally eat too much calcium, grapefruit, or walnuts too soon in the day, all of which I love, but would inhibit the absorption of my meds if I eat them too soon in the day. Win-win!
I am delighted to say that today, I’m very close to my healthy weight range per the BMI scale! I am grateful that this is made possible by NORMAL LEVELS OF HORMONE–WOOT WOOT!
My dose of Levothyroxine is just about at its max for my existing bodyweight–which unfortunately also means that my thyroid is pretty much toast–and also means I can’t generate hormones on-demand when I need them. This also means that in five or ten pounds, I’ll probably have to adjust my meds to a lower level to avoid going the other way, into hyperthyroidism–which brings its own set of fun problems.
But it’s so much better than the alternative.
If you’re struggling with these symptoms, if your doctor is telling you that you’re fine and something in your gut is telling you that you are not fine, I implore you:
Don’t stop looking for answers.
While many auto-immune conditions have very similar symptoms, if you at least know who the autoimmune enemy you are fighting actually is, you have a chance of making changes and feeling better.
I know that it’s hard. I’ve been there. It’s exhausting and frustrating and soul-sucking. When you’re that tired, the idea of fighting this flawed medical system to find your answers can seem damn near impossible.
But it is worth it.
Sarah Snow 