My thyroid is the bane of my existence. I’m not even kidding. And it’s off now, and I know it, and I need to find a doctor because I moved to Gilligan’s Goddamned Island and mine is 1700 miles away and is every bit as sympathetic as he is helpless. The few I’ve called are busy doing Hemingway Days or they’re Lobster Mobsters. Key West is a mecca for weirdos in a lot of ways.
I was diagnosed with hypothyroidism in the Emergency Room at Paoli Hospital during the first week of September 2013. I’d gone because I was sure that I was about to die; the heart palpitations, exhaustion, and inability to breathe deeply had me convinced, and I waited for Murphy to go to school (first day of first grade) before I went to get myself checked out because I was sure about to literally check out. It was another five weeks before I was able to get in to see a doctor to treat it. I’d probably been dealing with it for at least six months before I knew I had thyroid problems, and by the time they ran the blood work, I had almost no thyroid function left.
That was right when Murph was breaking bones, getting stitches and being diagnosed with Ehlers-Danlos Syndrome, and we saw every “ologist” there was to see at CHOP. Some days I’d sit in waiting rooms too exhausted to weep. My mother was suing me for grandparents’ rights back then because of course, she’d be making things worse rather than helping. So I was alone, being sued, spending all of my (cashed in retirement) money on gas, tolls, parking in the city and exorbitant attorney’s fees and trying to make sense of a really complicated constellation of symptoms from a condition I’d just recently learned existed (EDS, not hypothyroid, I didn’t know I’d have two weird, complicated diseases to learn). Maybe the stress made the thyroid crash worse. It’s hard to tell.
Over time, I’ve discovered that my thyroid is really, really sensitive. Even the slightest change in dose can bring on symptoms. Missing a single dose can knock me out for a couple of days. Almost anything can send me into a hyperthyroid or hypothyroid tailspin, and when I say anything? I mean anything. Changing diet, changing seasons, too much caffeine, too much exercise, too little exercise, vitamins, not taking vitamins, seeing a cute puppy, stress.
Thyroid disease is one of the most common ailments as women reach their late 30s and 40s. Researchers estimate about 30% of women have clinical or subclinical thyroid issues by they reach age 50. And yet, it’s not a go-to for most doctors when you go in with complaints. Perimenopause, general anxiety, and other issues can cloud what’s really going on. It’s important to get a physical every year, and it’s important to ask your doctor to not only check your thyroid but to do a full thyroid panel, including TSH, T3 and T4 levels.
I’ve been on Synthroid, or it’s generic pharma-bro Levothyroxine for a long time. I did try Armour Thyroid because everyone, including my psychopharmacologist, raves about Armour. The answer to everything it is, they say. You’ll feel like your old self; you’ll lose weight; you’ll have energy. It almost freaking killed me. While it is the answer from on high for lots of other folks, it was not for me. It made me so sick I spent two days in the hospital with a cardiac monitor. Luckily, I can still eat bacon without any ill effects. And so, I have learned to really tune in to what my body is doing so that I can catch it before it becomes an all-out disaster (which will happen exactly seven days from today if I don’t do something soon). The trouble is, I can never tell whether mine has gone into hyperdrive or just stopped doing much of anything because the symptoms are the same. So I can’t really shave a little off a dose or add a little to a dose to get me through because I might end up worse. Oh, stop. You’ve never done it?
These are 10 signs that my thyroid numbers are off, and they may help you, too.
I don’t mean trouble sleeping. I mean, you cannot go to sleep. Despite being utterly exhausted and heavily medicated, you cannot go to sleep. I have never been a good sleeper, but with the right bedtime routine, and the right medications, I can sleep for 7 or 8 hours a night. If my thyroid is off? I couldn’t sleep even if I took ketamine and propofol with a bottle of tequila after swimming laps for an hour. It’s a whole different and very identifiable kind of beyond tired wakefulness. When I can’t sleep at all for a couple of nights, I always check my sleep routine and meds, and then I wonder about the dreaded thyroid.
2. Heart Palpitations
One of the first signs that I have that my thyroid numbers are off is constant heart palpitations. They tend to be worse at night, but they get to be pretty constant at a point from the moment I open my eyes. Every. Damned. Beat. Of. My. Heart. I can feel it, and I can feel that my pulse is way too rapid, too. That upsets me (duh), which makes my heart beat faster and harder. The last time my numbers were really off, my doctor put me on a low dose of Bystolic, which is a beta-blocker for high blood pressure, even though I don’t’ have high blood pressure. His logic was two-fold. First, it lowered my blood pressure just slightly, which made it harder for me to feel the palpitations. Second, he thought that knowing I was taking blood pressure medication would help me realize that I was not, in fact, having a heart attack. Because sometimes the overwhelming anxiety or panic about having a heart attack actually does cause a heart attack (not even kidding). And this kids, is something Xanax doesn’t help.
I have baseline anxiety that is higher than most people’s supermax level, so when I’m really feeling it, and there’s nothing happening to justify it? I wonder about my thyroid because I take medications for anxiety and I meditate and I am mindful. If I still have out of control anxiety? Either my family has resurfaced or something physical is up. And combined with the insomnia and the heart palpitations, these are the trifecta of symptoms that all play not-so-nicely together. The anxiety ramps up because I feel like I’m having a heart attack, and it keeps me from sleeping. But not sleeping ramps up the anxiety, which makes the blood pressure higher. See how this goes? These are three major indicators, for me, that my thyroid numbers are in need of a check. Luckily, I’ve figured out they are also my first line of “something’s wrong,” and I can get in to see my doctor. Or I used to. Now I guess I have to wait until after Fantasy Fest on this Island of Lost Souls before I can get an appointment to get some bloodwork done. Honestly, the same things that make this a fun place to live also make it unlivable.
Waking up exhausted is miserable. If I wake up, and I feel like I need coffee, I always wonder. Caffeine is not my friend. In fact, I avoid it most of the time because even a little of it, in the morning, can cause both heart palpitations all day long and then insomnia. But sometimes I wake up. wash my face, brush my teeth and hair, and I need to rest before I can I get dressed. Then I need a nap, or to call it a successful day, shortly after. And after I walk down the down stairs? I’ll sit on the bottom one for a while gathering the strength to walk. Even after I’ve slept for a night, the overall level of aching, mindless fatigue doesn’t dissipate. This is another sign it’s time to go get blood drawn to check my thyroid.
5. Can’t Catch My Breath
You know how it feels after you’ve done something really strenuous and you’re out of breath? Like a spinning class or going for a run or walking up the stairs to ask your child who is wearing headphones with his door closed where he put anything you can’t find that he probably used to make some contraption of dubious value and questionable creativity? Imagine feeling that way when you’re sitting on your sofa reading a magazine. Like there’s a weight there but not a terribly heavy one. And you can’t really breathe well. That’s what happens when my thyroid numbers are starting to spin. I feel like I can’t breathe deeply, or I feel like I can’t catch my breath. It’s miserable. And it’s definitely a later symptom that things have gone very wrong if I ignore the early warning ones.
6. Hair Loss
I have very long, very thick hair. Some shedding of it when I take a shower is pretty typical. And less seems like more with mine. But when my thyroid is struggling, it comes out in huge handfuls. In fact, it’s so upsetting that my anxiety ramps up about even washing it (see also “reasons I sob in the shower”), which is great because I’m already anxious. Oh, and even better? Your eyebrows get weird. Yeah. Like the outer third of them just vanish, and they don’t really come back so well. Four years later, I’m still waiting for that mess to stop. Because it looks weird, and makeup doesn’t help. Hear that, Sephora? Get on it.
7. Weight Gain
It is hard to believe that I can’t lose weight given how much I watch what I eat and try to exercise, but I can’t. I am stuck at an unhealthy point, and the only way the scale will move is up. I’ve given up gluten, carbs, meat and tried South Beach, Atkins and Paleo, and yet I cannot lose any weight, even when my thyroid is fairly even. And when it’s off? Even a little? Oh, I can still gain. So if I suddenly feel like I’m putting on a few (more?!?) pounds? I start to wonder if it’s time to see the doctor. Sometimes, there really is a thyroid problem.
8. Numb or tingly hands
Weird, right? This kind of goes along with random coldness which I have experienced for as long as I can remember, but that’s going to be less of an issue now that we’re here in Key West. But I still feel the numbness and tingling, mostly in my hands but sometimes in my feet. When it’s really bad, or really off, it’s almost like some kind of shooting neuropathy that was, at first, kind of scary. So, if my hands are feeling odd, and I know I haven’t had them in a position to fall asleep? I know it’s time to pay attention. Also, don’t randomly look for this symptom on WebMD. Probably, you shouldn’t look for any of these symptoms in isolation there.
9. Brain Fog
Imagine if you took a lot of cold medicine when your sinuses were really congested and then tried to work on some calculus. That’s kind of what thyroid-related brain fog is like. You are literally trying to wade through clouds to think through a simple process. I mean, I’ve always been able to think of something, head off to find it, get to another and room and wonder why on earth I’m there. It’s not like that. It’s like struggling to think when cotton candy is stuck in your brain. It’s pretty terrible, and if I’m not dealing with a cold or other illness, then I have to wonder if my thyroid is off its mark.
10. Dry Skin and Nails
When your skin is dry and flaking and your nails are ridged and splitting and won’t grow (and it’s not the middle of February in Pennsylvania), it’s time to look for other causes. Often, it’s my thyroid. In fact, I am in a really rare period where my nails are pretty strong and healthy, and I’m liking it. Oops, no. I broke two not an hour ago. see? I told you it was going off track.
Thyroid symptoms can be different for everyone, but never underestimate the impact of a problem with that little butterfly-shaped organ. It controls almost everything in your body. I’m pretty sure that it’s making my feet swell in the afternoons these days. Why? Obviously, because it hates me, and I haven’t had time to coddle it because we moved. Thyroid issues are complicated and systemic. If you do find that yours is overactive or underactive, you want to start paying close attention to your body so you know when to go to get it checked.
When I was first diagnosed, a friend who’s a nurse told me to read this, and it helped to explain a lot.
I liked it because it explained what was going in a way that’s easy to understand and didn’t offer some magical “fix” like a diet and exercise program. There is no magical fix for this. You take your meds, you work with your doctor, you eat healthy foods and you stay as active as your energy level allows. Hopefully, things swing back to a level approximating normal, and your life goes on. Or, you know, you’re me, with a thyroid that thinks it’s a special delicate snowflake and wants to kill itself and take the rest of my body with it.
My doctor suggested that I take a thyroid support formula, and I must have tried 7 or 8 before I found one that I liked. You might find it helps, too. This is not a substitute for medication; it simply helps support thyroid function and keeps the little beast a bit happier. Iodine is really important!
And finally, because I have a friend who is a naturopath and herbal medicine guru, and she strongly believes in essential oils, I have a bottle of this that I don’t use nearly enough, but I do feel all kinds of better when I use it regularly, and it smells good.
I’m going to go try to find a doctor who might actually want to practice a little medicine now instead of judging which old white-haired white due looks most like Papa Hemingway (seriously, it’s a whole complicated calendar of activities). I might have to go to Marathon or Miami or someplace that doesn’t have weeks-long festivals about mangos and lobsters and protests that block traffic about kidnapping key deer (I love the deer, not the traffic). You, if you think your thyroid is acting out of whack, need to go see your doc, too. And try some of this stuff. It does help.
These are some things that I think are great…
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