I was sick this spring, and at the doctor for a diagnosis. As is normal procedure, he felt my neck.
"Wow, your thyroid is huge!" he said.
"Yeah. I know." We've been down this road before.
He glanced over my chart, then at me, with my thinning hair, fatigue, coarse facial hair and general roundness, and said, "We need a full blood workup."
"OK – but we've done this before."
The first time was so long ago that I had a different doctor, probably 18 or 19 years ago. The blood panel said that everything was fine. "We'll keep an eye on it," the doctor said.
Years passed. Pregnant with my fourth child, I inexplicably lost weight all through the pregnancy. When I had her, I was 45 pounds lighter than I was the day I got pregnant. It stayed off for a year. I was eating a lot of fresh fruit, since that was my craving with this baby (with my oldest it was salad and eggs; with my third it was ham fried rice.) Still, I was also eating an extraordinary amount of sweets, which I always crave. I was eating more of everything than I ever had before. With two adolescents, a preschooler, a toddler and a newborn, I was also getting very little exercise and craving naps even after I had them.
After almost exactly a year, I started to gain weight. I cut down on sweets, then cut down on all food. The weight crept up anyway.
My doctor – a new one this time –sent me to an endocrinologist to be tested for Polycystic Ovarian Syndrome, based on my difficulty getting and staying pregnant, and the fact that I'd never had regular periods before Baby #4. Suddenly, after the baby, they were showing up every 30 days or so. For someone who regularly went three months without a period, it was actually annoying. "Again? We just did this!"
The endocrinologist felt my neck."Your thyroid is quite enlarged," she said. "Has anyone ever told you that?"
"Yeah, a couple of years ago."
"Did they test it?"
"Yeah. Everything was normal."
She did an ultrasound of my thyroid, then sent me for a complete blood workup. I did not have PCOS, it seemed,and my thyroid function tested normal.
"I'm not convinced," she said. She wanted another test on my thyroid. My portion, after insurance paid out – and we have great insurance – was $500, for a single test. I don't even remember what it was for anymore, but I declined. My PCOS diagnosis was negative, we'd already run thyroid tests, and I was not interested, with 4 kids and one income, in forking over $500 on a possibly unnecessary test.
At least twice more in the intervening years, my doctor has noticed that my thyroid is enlarged, and become alarmed, especially given some of the rest of my history/symptoms. So, he'll again run blood tests, tests that will all say that I'm fine.
So, last spring, I was grumpy and miserable enough that I griped to the physician's assistant when he mentioned doing it again. "We do this every three years or so, and I'm just tired of doing it over and over."
"Well, yes, I can see how that would be annoying."
He flipped back through my chart. "Yeah, last time everything was normal," he said. "We'll just see what comes up this time." He also ordered an ultrasound of my neck.
I have long resigned myself to the idea that if something is wrong, a standard blood test won't catch it. I also don't enjoy getting blood drawn just to hear that I'm fine. I grumped, I procrastinated, but I got blood work done AGAIN, and had a new ultrasound done.
Unlike my endocrinologist, my GP doesn't have an ultrasound machine, so I went down to the huge testing facility in town, where I've had MRIs, mammograms and more.
The technician seemed slightly bored. "So, what makes you think that you have thyroid problems?" she wanted to know.
I was annoyed. I felt as if she had looked at me and was thinking, "Come on, lady, every fat woman in town decides after reading some magazine article that she has thyroid issues. Just lay off the potato chips." I'm not a nut about healthy eating, but I have never in my life, for instance, polished off a carton of ice cream by myself, as an annoying number of people assume, after no more than looking at me. Besides, I was there under protest.
I answered neutrally, "My doctor has noticed that my thyroid is enlarged. He'd like some tests run."
She had me lay back while she prepped the ultrasound wand. I felt her attention sharpen as soon as it touched my neck. She took a full hour plus to scan my throat, hitting what I think of as the still photo button ever minute or so. When we were done, I was miserable– I hate having my throat touched, much less getting pressure put on it – and dizzy. I went home and commented to my husband, "At least she stopped treating me like a hysteric when she saw that it actually is enlarged."
My blood tests - surprise, surprise–came back normal. My ultrasound, however, showed nodules on my thyroid. My doctor's office referred me to a surgeon. My PA remained puzzled during my follow-up visit to go over the test results – "Whatever they are, they're obviously not impeding function," he said.
I was still grouchy, but at least well enough behaved NOT to say what I thought – "Oh, yes, of course the gland that's been swollen for years and is now covered in unexplained growths must be functioning at its optimum." I just made an appointment with the surgeon.
The nurse ran through the now very familiar list of questions.
Fatigue? "Always."
Difficulty sleeping? "Yes."
Hair loss? "Since I was 16. This (riffling my hair) is all Rogaine."
Difficulty swallowing? "Yes. Even as a kid."
Digestive issues? "I was diagnosed with an ulcer at 20. It hasn't bothered me for years."
Joint issues? "I was just diagnosed with cubital tunnel syndrome." (It's like carpal tunnel, only in your elbow.) I also have knee issues.
Unexplained weight gain or loss? Depression or anxiety? I've been through all of this before. "But my blood work says my thyroid function is normal."
The surgeon felt my neck and dictated to his nurse, "REMARKABLY enlarged thyroid." I giggled. He had me swallow while he felt my throat. He felt all around my neck, then had me meet him in his office.
He was uninterested in talking about my normal blood test results, even when I brought them up. "The normal thyroid is about this long," he said, holding his fingers about an inch and a half apart. Mine, apparently, goes almost up to my jawbone, and down to my collarbone, and maybe even under the collarbone, "but I can't feel down that far." It spreads in the other direction almost ear to ear. "You have a minimum of 50 times the mass and volume that you should," he said. "Enlarged," indeed.
The original plan had been to look at removing the nodules, at least some of them, but he was not interested in trying that. Turning on his computer, he showed me the scans. The largest nodule is about 3 inches across, twice the normal size of the whole thyroid. He showed me more and more. "This one is over 5 centimeters. This one is over 6. This one is 3.5. So is this one." Things that were normally viewed in a single slide took two for me, on both sides of my neck.
I could keep it, he told me, but it was going to start encroaching on my voice box and windpipe. The best option would be to take it out entirely, and put me on daily pills for the chemicals it normally provides.
So, in a week, I go into the hospital. I have to stay overnight, which I am not at all thrilled about, but it's doable. I will leave without a thyroid. "Your operation will take twice as long as an ordinary thyroid removal."
He's making no promises for how I'll feel after it's gone, but the surgeon has made one promise about how I'll look. "You won't recognize your neck," he says.
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