A personal story of the pain and anguish of thyroid disease — hoping to help others who are suffering

By Lyn Hacker
Special to NKyTribune

A friend of mine has challenged me to write about something I deal with on a daily basis. It is my thyroid. He challenged me because January was Thyroid Awareness Month. He has also suffered from this condition, and nearly gone into congestive heart failure because of it. He wants me to state categorically, it is very serious and affects men as well as women.

That said, my old friend, there’s not enough room to write about it here as extensively, or as medically, as is needed to explain it all. There are so many intricacies to the condition, and it affects different people in different ways. But here is something to take note of: According to LifeWorks Wellness Center: “On a global scale, a staggering 200 million people have problems with their thyroid glands, with over 50 percent remaining undiagnosed. In the US alone, the instance of thyroid disease is running close to epidemic levels and equally as worrying is the number of undiagnosed or misdiagnosed cases.”

Take home lesson– if you are feeling any of the following: weight issues, bone-crushing fatigue, depression, hair loss/thinning hair, muscle aches, heart palpitations, dry/itchy skin, anxiety, brain fog, problems conceiving or carrying pregnancies, and/or chronic pain – see a good doctor and ask for a thyroid panel.

My friends on Facebook have noticed I’ve substituted a thyroid ribbon for my usual profile photo. This is because January was National Thyroid Month, and I’ve shared bits and pieces of articles about thyroid problems on my status all month long, including some helpful articles from thyroidchange.org.

But I’ve not really written about what it’s like to deal with this on a daily basis. I hesitate to write about it – I’m embarrassed by it, although I don’t know why. It wasn’t my fault. It wasn’t brought on by bad living. I’m not seeking pity. But I’m becoming more and more aware of what an epidemic it’s becoming, and how people are suffering from its affects. I feel compelled to speak up, so that maybe I can help someone else.

It’s not ‘in your head’

This disease also affects men on a large scale. But if you are a woman, prepare to meet obstacles getting the correct diagnosis and treatment, including being sent to a psychiatrist. It is sad but true, many doctors still feel it is “all in your head.”

I am over 60 now, and beyond such foolishness.

When I was in my early 40’s, I developed Graves Disease, which is an acute form of hyperthyroidism. Manifesting in “thyroid storms,” it was a walk through Hell. My heart raced and jumped around like it was going to explode. I couldn’t sleep and my hands, (and at times my whole body), shook so badly that even strangers noticed and commented on it. (“Honey, are you okay?”).

I was working at a horse farm then. It was during foaling season and I was on the foaling crew and assisted the veterinarians with the mares and foals as needed. One vet noticed and remarked on the fact that I was unable to connect IV tubing due to my hands shaking. Jokingly he asked if I was suffering from DTs, but later pulled me aside, and in private, told me I should see a physician (he knew I didn’t drink that much!). He had recognized the signs.

I did, and that is where my problems got so much worse, because the doc wasn’t a good one. He did the first part of everything properly. He tested me for antibodies and diagnosed the Graves Disease, but that is where things went south. Without educating me at all about the condition, or offering me any other options, he recommended radiation ablation of my thyroid gland, which killed it. I did it because he had convinced my mother I could die and she was freaking out. He then sent me back to work with a dying thyroid, and finally prescribed synthroid for me without taking any blood tests. I was advised to return in a year.

Unbeknownst to me, my life had changed forever. There is this thing called TSH, thyroid stimulating hormone, that your body secretes, which tells the thyroid gland exactly how much thyroid hormones (T3/T4) your body needs to do its thing. The medication is supposed to replace that. How does the doctor know? He/she tests the TSH and hopefully some other markers. Most of the time when a person develops hyperthyroid problems (Graves Disease, Hashimoto Syndrome, etc.), the thyroid ablation and supplemental hormone solves the problem.

But there are a few of us who have TSHs that “swing,” and by swinging, I mean swing from one extreme to the other, for absolutely no reason that I, or my “new” doctor, in the 20 years hence, have been able to figure out.

Looking for a solution

In the meantime I’ve seen three specialists, who also couldn’t offer an explanation. I’ve spent entire years hypothyroid, (dull, foggy, gaining weight, itchy, cold, apathetic), being routinely tested (more often than once a year, I might add), and having medication changes that didn’t get me back to “normal.” I’d then become hyperthyroid, (heart racing and jumping, shaky, hot, insanely hungry, brain flying through hyperspace, sleepless) and spend the next year trying to get “normal” again. 2014 was another of those years – hypothyroid from January to October, where I evened out for two months, then went hyper.

It’s truly too painful to describe how this darkens your mind, heart and soul, how it “changes” you. I find I’m always second guessing myself, and my confidence has truly suffered. I feel like I have dissociation episodes and at times truly wonder who I am, and not in an existential sense. In a way, when you’re hypo, it is like you are slowly dying. (Without your medication, you will become comatose). Hyper, you wonder which next run of tachycardia will be your last. Worst of all is you can’t control any of it. You’re hopefully working with a doctor who truly cares, but you’re tied to a blood test and that comes down once every two months, if you’re lucky. Imagine spending a year like that. Or 20.

Lots of people do, and it’s not in their heads.

Before the ablation, when I had a problem, I solved it. Didn’t like the situation? Got out or changed it. Got fat? Lost weight. I had control over my life. For better or worse, it was up to me.

Now that most basic control has been wrenched out of my hands, and I’ll never have it again. I can gain weight on 1,000 calories a day. Or I can do every relaxation exercise I know and still shake like a leaf.

Hypo, an insidious apathy takes over, because it seems you need some sort of metabolic activity in your body and brain to actually care about things. There is the horrible brain fog you have to fight through over the tiniest little things – times when you leave a place and think you are turning one way, but instead turn another, and wind up two towns away. There is not being able to remember the name of a street where you used to live. There is not being able to remember a word you need – you plug in synonyms on Google Search to find it. Bills and appointments must be posted on a calendar, and the phone alarm has to remind you to check the calendar every day.

It’s like you’ve become one of the most inadequate, incapable people you can possibly think of, totally unable to handle or do the simplest things. Hyper, you become hyper vigilant about everybody and everything. Worrying and anxiety becomes nonstop. In short, everything you thought you were, or could be, has vanished via the next round of tests.

There is no second wind.

My doctor now would laugh at me for saying this, but I swear it’s true. It’s like you take a little pill of energy in the morning, and when it’s gone, it’s gone. As in kaput. You tire easily, and you’ll remain that tired till the next morning. There’s no spending one moment longer, nor adding one more thing in. There’s never going one more mile nor one more minute. When it’s spent, it’s spent, and you don’t recover until after you take your next dose of Synthroid.

I’m not prone to talking about my problems, especially in a public forum, but this has affected me for so long, I can’t stand the thought of others suffering in silence with it. That’s why I partnered with thyroidchange.org to help get the word out.

If any of this sounds like you, male or female, check with a doctor and get those panels done. If the doctor isn’t willing, go to another one. If your insurance doesn’t cover it, pay for it out of pocket. Find a way. Find someone who will work with you to get the answers you need, and to make the changes to regain your life. Because it is your life that’s wasting away, adrift in a sea of confusion, pain, fatigue and guilt spent over not being able to be who others think you should be, or who you think you should be.

I am so thankful for the wonderful doctor I have now, who has brought me as close as I have been, in the past 20 years, to “euthyroid, or “normal.” Good doctors are out there, though you may have to look for them.

For assistance, check out www.thyroidchange.org, which has many ways to help, including an interactive section that enables you to find the right doctor for you. These doctors have been chosen for their willingness to order full thyroid labs as well as take into account patient symptomatology.

They can help you figure it out. It’s a whole, new world.

Lyn Hacker is a Lexington native raised by Appalachian parents to be not only educated but proficient in the living arts – working very hard, playing music, growing gardens, hog farming, orchard management and beekeeping. The UK graduate has been a newspaper staff writer and production manager, a photography lab manager, a Thoroughbred statistics manager, a Bluegrass singer and songwriter, a registered respiratory therapist, a farmer, a Standardbred horsewoman, a Red Barn Radio promoter and a beekeeper. She lives on a farm in Sadieville.