How is this normal? Diagnosed with hypothyroidism at age five

I hear from parents of children struggling with symptoms that look a lot like hypothyroidism and they wonder, “Does my child have hypothyroidism?” I also hear from parents of children already diagnosed with hypothyroidism trying to determine if their child’s seemingly unrelated symptoms could actually be a red flag that their hypothyroidism is not being well treated. Hypothyroidism is wrongly assumed to be an illness only found in “older” women. This is far from the case. I hear from women of all ages, men, as well as parents of children and adolescents with hypothyroidism every single day.

Written by Sarah Lentz

I was diagnosed with hypothyroidism when I was five years old. I had curly wire for hair, poor balance and concentration, and I had a bone age of nine months. My parents were concerned enough to take me to the doctor, who ran some tests. One was a TSH test, and my results fell within the “standard range”, but at the high end.

The doctor had a hunch, though, and he acted on it, prescribing me a low dose of Synthroid. I grew about an inch a month over the next twelve. Sometime during that year, I was given the official diagnosis of hypothyroidism.

Thanks to the Synthroid, I eventually caught up physically with other kids my age, but I was still delayed. At some point, I underwent an IQ test with the local school district, and the tester declared me “borderline retarded” (if only they could see me now writing a guest article for Hypothyroid Mom which has over one million followers from around the world). I went to a free Headstart school program (and hated it). When I started attending a regular school, though, most of my teachers didn’t complain that I was slowing down the class, so I was allowed to stay, as long as I kept up.

My third grade teacher was the only one who made me feel as though I was too stupid to be in her class. Every time I asked a question, she’d give an exasperated look. I learned not to raise my hand.

Growing up hypothyroid has its challenges, but as long as my (roughly annual) TSH tests came back “normal”, no changes were made to my dosage, and any developmental delays, mental health issues, and other strange symptoms were attributed to other causes, at least by the doctors.

I was told that I was less mature than other kids my age – not only physically but also socially and emotionally (to say nothing of my mental shortcomings) – because I wasn’t interested in socializing, and because I didn’t react to others with appropriate emotional responses. I felt emotionally flat when I was supposed to be excited or happy. I felt overwhelmed by emotion when I was supposed to be fine.

I remember the day I bought my first car – a silver Mercury Capri with a hand-crank sunroof and a German engine that drove my mechanic brothers up the wall – and my dad asked me how I felt about it. I felt nothing, but I tried to at least look happy for his sake. I knew I was supposed to be happy, but all I really did feel was mildly anxious. I enjoyed driving the car (until I wrecked it by running over a Yield sign at the abbey where I worked), but whenever someone asked me, “How do you feel?” I froze.

I’ve never liked that question. My answers have usually been the wrong ones.

I even came up with an idea for a t-shirt: “I’m not moody, I’m thinking (Don’t interrupt).”

Except, I was moody. So, the t-shirt wouldn’t have fooled anyone for long.

Fast-forward to the year I became pregnant for the first time – a week or so after my wedding day – and fortunately, my doctor knew I needed more frequent thyroid testing. I had a normal, uneventful pregnancy, and our son was born fairly easily. It was only afterward, when I forgot to take my thyroid meds several days in a row, that I took a turn for the worse.

First came the shakes – the violent shivers that took over when I felt the slightest change in body temperature. It took several minutes with me wrapped in layers of warmth for the shivering to calm down. I asked the doctor about it, and he said one word, “Nerves.”

Then he asked me if I’d forgotten to take my thyroid meds. And I confessed. I also started taking them again.

To this day, I’m not positive that thyroid issues were at the root of the post-partum depression that swallowed me whole for months. I knew I was terrified that I would do something horrible to my baby, and I knew most people would think I was a monster if they knew about the thoughts going through my head.

I told only my husband, who rescheduled a business trip he was about to take, so he could stay close and protect me and our baby. There were times when he was at work when all I could do was hold my baby closer and say over and over again, as tears rolled down my face, “God will protect us both.” It got me through, but I’ve never forgotten that, and I never will.

It was when I was pregnant with our third child that I was introduced to Lexapro.

I’d been taking Effexor XR for a couple weeks before discovering I was pregnant, but when I learned it was linked to birth defects in the third trimester, I asked if it was safe for me to just stop taking it. The nurse I talked to said, “Oh, you’ve only been taking it for a couple weeks, so, sure, go ahead.” I knew nothing of psychotrope withdrawal, but that was the worst first trimester I’ve ever been through, and by the end of it, my husband practically begged me to ask the doctor if there was something I could take – something safe for our baby – that would help level me out.

Lexapro was the third drug prescribed (after Zoloft and Celexa), and I took it for two and a half years before I was finally determined to be free of it. It took months of experimenting with tapering schedules, but I finally found one that was slow enough. It took me about six months on that schedule to withdraw from Lexapro, and when I was finally done with it, I never wanted to touch another psychotrope again.

At age 30, I discovered – with an ultrasound – that I have PKD, Polycystic Kidney Disease. My dad had it, as did his brother and his father, who died of it when my dad was only fourteen months old (at the time, dialysis was not an option). My latest bloodwork (I have a metabolic panel done every year) suggests that my PKD has progressed to stage 3, and when I read about the symptoms of that stage, it’s hard not to see the ones that feel an awful lot like hypothyroidism – fatigue and weakness, anemia, difficulty sleeping, restless legs, bloated feeling.

My labwork over the recent months has also given me reason to suspect that my liver – which is also now covered with cysts – is somehow less effective at converting inactive thyroid hormone T4 to the active T3 needed by the cells of our body.  “Most T4 to T3 conversion happens in the liver, kidneys, and muscles,”(1) and at least twenty percent of the T4 to T3 conversion happens in the liver (2) (though, according to some sources, “most” T4 to T3 conversion happens there (3)), and while liver cysts don’t typically affect liver function – at least in a way that makes doctors nervous – it’s still possible for the liver’s ability to convert T4 to be compromised. I can’t help wondering if that’s why my thyroid medicine hasn’t been working as well as it used to.

It never worked perfectly, but it has worked better in the past than it’s been working lately. So, what’s really going on? Is it the PKD, or is it my hypothyroidism? Or is it both?

Back in July of 2013, when I was experiencing strange neurological symptoms (which were chalked up to a trauma I hadn’t sufficiently “dealt with,” i.e., my dad’s passing), my GFR estimate was at 56, which is in stage 3 territory, and my creatinine was up to 1.08, just a bit above the normal range. I started eating better – motivated mostly by my wanting to stop feeling like crap – and my kidney function and overall health improved.

It’s a cycle, really. I’d eat healthfully for a few months and exercise (just a few minutes a day; I’m no hero), I’d lose weight and feel more energetic and younger on the inside, and my next blood tests would be golden.

Last November, though, I started a new job – the first outside-the-home job I’ve had since before I married (back in 2001). I was feeling pretty healthy, then. Not marathon-ready but I could get out of bed in the morning without wanting to cry, so…all in all, I was game for a new challenge.

Five months later, after months of eating whatever was easy to prepare and not sleeping well – and forgetting to take my thyroid meds for a few days here and there – the job was taking a much heavier toll on me. And I began to resent having to work, having to go anywhere, and having to get up at all.

I wasn’t sleeping well, partly because I kept telling myself I was a night-owl, maybe because it postponed my having to actually try to sleep in spite of the restless legs and the in-house movies running together in my head.

I don’t want to be a night-owl, anymore. I want to be a morning person. I’ve learned that’s when I do my best writing, and when I get my writing done early in the day, it helps set the tone for the rest of the day. It’s a good tone. I like it.

When I asked my primary care doc if she could prescribe me a low dose of T3 thyroid hormone replacement medication to supplement my T4 in Synthroid, she consulted the MDs in the office, who said, essentially, “No, we don’t do that. It could make her hyper-thyroid, which could be dangerous to her heart (and we don’t want a lawsuit). But we can give her a referral to an endocrinologist.”

So, I have my very first appointment with an endocrinologist in September, but I can’t wait until then to feel better. I won’t. If I learned anything from my dad’s last years on dialysis, it’s the importance of being my own best healthcare advocate. Feeling like roadkill for the next three and half months is not an option. Proactive is the word. Research is another good word. Hypothyroid Mom has been a great help with that.

A personal favorite is “When Thyroid Disease Masquerades as Psychiatric Disorder.” I spent so many years wondering if I would someday end up in a psych ward – when someone finally looked close enough and saw how I was barely holding together. I’ve taken tests and filled out questionnaires that led to a list of possible diagnoses but that ultimately led to doctors prescribing something in a bottle that they were sure would make me a better person – more organized, more emotionally stable, more sociable, more likable – less depressed, less anxious, less paranoid, less sensitive.

When I told my last doctor that I was done with Lexapro, that I was going to withdraw from it – and he finally accepted that I wasn’t going to be dissuaded – he wasn’t thrilled, and he couldn’t offer much help with the withdrawal process, other than to prescribe progressively smaller doses. He didn’t know how to help anyone to STOP taking SSRIs. He only knew how to promote and prescribe them. Plus, he was pretty sure I had some sort of chemical imbalance, and that I needed some sort of chemical help for it. He just wasn’t exactly sure what, so a game of “let’s try this one, now, and see what it does” sounded like the thing to do.

I now know that unless I am my own best healthcare advocate, I’m going to continue feeling messed up, pathetic, and useless, until my mind and body finally quit for good (and it’s anyone’s guess which one will go first).

I’ve got the reins, now. I’m not anti-physician, but I don’t expect anyone to be able to take a look at me, ask questions and listen to my answers, do the usual doctorly checks and suddenly know exactly what’s wrong with me and how to fix it. I’m not an urgent case. For a doctor, I will always be a back-burner patient. Nothing has ever been seriously wrong with me – just wrong enough sometimes to make me wonder why God was even keeping me alive.

I’m glad he is, by the way.

I have hypothyroidism, and I’ll always have it. I didn’t know until the past year’s ultrasound that I have less than half a thyroid gland (one lobe, no isthmus, so much for the butterfly shape). My thyroid is probably shaped more like a kidney. Go figure.

I’ll always have PKD, too. But stage 3 is not irreversible. I’ve reversed it before, and I can reverse it again. And I’ll do what I need to do, including eating more healthfully and getting back to my daily mini-workouts, to help my body convert more T4 to the T3 it can actually use.

The Miracle Morning routine helps me remember to take my thyroid meds, which I’ve learned is pretty important. It also motivates me to eat better, so I can maintain or even improve my new morning energy levels, which are rising.

Anyone who’s ever experienced hypothyroid brain fog – and been nervous about the greater risk of Alzheimer’s – knows what I mean when I say I’m determined to do what I can to improve my brain function. Not only do I need my brain to work in order to write well, I need for it to keep working for a good long time, yet. I’m only just starting with this writing business, after all, and if having this Miracle Morning routine will make me a more productive, more proactive, and happier person – with a clear and more agile mind – I’m going to milk it for all it’s worth.

I’m still my husband’s wife and my kids’ mom, and I’m still my blog’s chief contributor. I still have lots to do, and I want to do it well. The more I learn about it, the more I see hypothyroidism as something to work with – in much the same way as I see my hypersensitivity to touch, to light, and to sound. It’s not an obstacle, unless I allow it to be. It used to be, though.

I had no idea, until the last few years, that much of my frustration growing up was due to under-treated hypothyroidism. It’s not something I’m going to spend much time ranting about, but there must be many children and teenagers walking around today, struggling with symptoms that doctors dismiss as “growing pains” or as “teenage angst” or that they try to treat with hasty prescriptions for psychotropic drugs. I’m not saying antidepressants are never a good thing, because I’ve read testimonials by people who credit a particular medication with saving their lives, and I haven’t walked in their shoes.

But it’s high time we had more widespread testing of children and adolescents – not just of their TSH levels but also of their Free T4, Free T3, and thyroid antibodies.

We need to let under-treated and untreated young people with hypothyroidism know what’s really going on and how they can begin to feel better – mind, body, and soul – and then how they can help others to do the same.

About Sarah Lentz

Sarah Lentz is a freelance blogger and writer of short stories. She blogs at hypothyroid writer [dot] com and lives in Minnesota with her husband and four kids.

Sources:

1. Liver Doctor. Thyroid health depends on your Liver. Retrieved from: http://www.liverdoctor.com/thyroid-health-depends-on-your-Liver/
2. Natural Endocrine Solutions. Do you have a T4 to T3 conversion problem? Retrieved from: http://www.naturalendocrinesolutions.com/articles/do-you-have-a-t4-to-t3-conversion-problem/
3. Elephant Journal: Hypothyroidism is all the rage these days. Retrieved from: http://www.elephantjournal.com/2014/06/hypothyroidism-is-all-the-rage-these-days-hannah-brantley/