IT HAPPENED TO ME: I Had My Thyroid Removed, And It Resulted in a Rare, Debilitating Chronic Illness

I had this surgery to improve my life, and now it's so much worse.
Publish date:
April 5, 2016
surgery, chronic illness, Thyroid, side effects, Hypoparathyroidism

Having my thyroid removed was a spur-of-the-moment decision.

My primary-care doctor had been monitoring my enlarged thyroid for a few years. It was growing, but my hormone levels were normal, so there was no need for it to come out unless it was starting to bother me. Although there was no medical urgency to have it out, it was starting to become an annoyance. I felt like I had a lump in my throat all the time, and I was constantly choking on food going down the wrong pipe. To be honest, I also didn't like the unsightly bulge sticking out of my neck.

I had to make an appointment with an otolaryngologist for my nine-year-old daughter last fall, and I thought, My insurance deductible for the year is met — why not ask him about my thyroid? So I added an appointment for myself as well.

My appointment with the surgeon was pretty brief. He saw no reason why I shouldn't have my thyroid removed. He described the surgery as a fairly simple one with an easy recovery. I would be back to work in 10 days with little post-operative discomfort. He then handed me off to the scheduler to set a date.

She gave me some paperwork, which briefly described what to expect from the procedure. Some neck pain and stiffness and a hoarse voice were standard side effects. She briefly mentioned that some people had to take extra calcium supplements for a few days after, but she didn't make it sound like it was a big deal. I put it on my calendar for December 28, 2015 — right under the wire for using up my benefits for the year so I wouldn't have to pay anything out of pocket.

I had a lot of anxiety leading up to the surgery. I've had a few surgeries, but this was definitely the most serious one. After all, they were cutting open my throat and removing a vital organ from my body. I had a lot of trouble sleeping the week leading up to the surgery. My biggest worry at the time was that I'd read a lot of people gain weight after having their thyroid removed. Looking back now, that should have been the least of my concerns.

I'm severely needle-phobic, and it took four Xanax the morning of the surgery to get me through the IV and the initial prep. Even then, I couldn't stop crying as they wheeled me into the OR.

My first clue that something wasn't quite right when I woke up was the time. I had gone in at 11 a.m. and the surgery was only supposed to take an hour. It was 4:30 p.m. when I woke up. My surgery had taken three hours. At that point, though, nobody mentioned anything being wrong, so I didn't think much about it.

The morning after surgery, when I was supposed to be going home, I found out about the big potential complication no one had warned me about ahead of time. Along with your thyroid, you have four parathyroid glands that regulate your calcium levels. They are the size of a grain of rice. It's extremely rare but possible during thyroid removal for the parathyroids to be accidentally removed or damaged. I found out from my research later that this is usually due to the inexperience of the surgeon.

Right after surgery, they started testing my calcium and parathyroid hormone levels. My parathyroid function was basically at zero. My calcium levels began dropping immediately. They started giving me massive doses of oral calcium supplements around the clock, but the levels kept dropping. I was told I'd have to stay in the hospital until my levels went up.

My levels went so low that I started experiencing physical symptoms — numbness and tingling in my face and extremities, and muscle spasms. When they came to draw my blood, as the needle went in, it felt like there were bees buzzing all over my face. I had to have an IV dose of calcium, which finally stabilized my levels enough that the oral supplements began to work and I could go home.

But my struggles were only just beginning.

I was discharged with a diagnosis of hypoparathyroidism. I Googled it to death. It was extremely rare and the long term implications were discouraging at best. In addition to daily crippling fatigue and brain fog, I faced potential neurological and cardiac issues. The only real treatment option is calcium supplementation and Calcitriol, an "activated" form of vitamin D that works in the gut. There's a new medication out that replaces the parathyroid hormone, but it can possibly cause bone cancer. Many people end up having to quit their jobs due to the effects of this illness.

As I recovered at home, I became acquainted with my new reality. Calcium, 1800mg, three times a day. I was supposed to take Tums for fast-acting calcium so I bought the biggest bottle I could find. I quickly found out that Tums and my stomach did not agree — taking just a couple would cause hours of agony.

I had to take thyroid hormone, since my thyroid was now gone; however this cannot be taken within four hours a taking calcium. I now had to set an alarm in the middle of the night because that was the only time I could take it. But the thyroid meds made it really difficult to sleep; I would wake up in the middle of a dream, my mind racing like I was on speed. I couldn't shut the dream off. And the fatigue I felt during the day was crushing.

I also had issues with my voice. At my first follow-up after surgery, the doctor just passed it off as irritation from the breathing tube. After six weeks without improvement, he finally, reluctantly admitted that my right vocal cord was paralyzed, — damage that had occurred during the surgery. He tried to tell me it would be fine, but I insisted that he order speech therapy for me.

Back at work, I was doing what I could to get through each day. I had just started a new position as a computer technician at a hospital. As the only female tech, I felt I needed to work harder to prove myself. I would barely get through the day and then have to go home and somehow take care of my daughter and our two dogs, one of which is a very energetic Dalmatian puppy. I had no choice — I had to take care of everyone.

Four weeks after surgery, despite following my regimen of pills and supplements, I started feeling the symptoms of low calcium again while at work. My doctor's office ordered some stat blood work, and when it came back critical, I was ordered to the emergency room to be admitted. I went into the bathroom, had a quick five-minute cry, and then walked out in organization mode to make arrangements for my daughter and the dogs. This was my new normal.

Most cases of hypoparathyroidism after thyroid surgery are transient. The parathyroids kick in on their own after a couple of weeks, and things go back to normal. Unfortunately, that hasn't happened in my case, and my endocrinologist believes it is now permanent.

Dealing with the emotional aspect has been the hardest. I have no relief from the physical symptoms. I feel like there's no hope that I will ever feel like the person I was before the surgery. I'm struggling to accept that this is now my life; that this is how I'm always going to feel.

I'm single, and I'd like to think that dating is possible, but right now that seems so far out of reach. It's such an effort to complete a day. I've always been very independent and I am proud of what I've accomplished as a single mom, but there have been days where I've wished I was in bad enough condition to be admitted to the hospital again, just so that someone could take care of me for a couple days and I could get a break from all my responsibilities.

I'm angry. I had this surgery to improve my life, and now it's so much worse. If the doctor would have gone over the risks, if I would have asked more questions, sought out a doctor with more experience...

Most ENT surgeons do many other types of procedures besides thyroid surgery. They might only do a few thyroidectomies a month. My primary-care doctor told me later that there are specialists at Yale, only an hour from my house, that just operate on thyroids. If I had one of them do the surgery, would I have had the same outcome?

I'm no stranger to chronic illness. I already have a genetic disorder called Ehlers Danlos Syndrome that causes joint instability, bruising and fragile skin due to a collagen deficiency. I've had surgeries and many challenges from it, but I've never let it knock me down.

This time, I'm finding that positive attitude a little harder to hold onto, but I know, somehow, I have to find a way to hang onto the belief that I can find my way through this.