Hell on Heels: Soul Searching There's a Dead Caterpillar In My Ice Cream Cone April Ricchuito

Allyson Jones Averell (Ally) modeling body painting she did in honor of Thyroid Awareness Month

Arms stretched out in front of me, I focused on raising my arms to the heavens as the doctor pushed down.  “Keep pushing up,” he advised.

“I AM,” I said through gritted teeth, as my heavenward reaching arms plummeted south for the umpteenth time.

“I think you’re anemic,” my chiropractor mused.

“My blood tests aren’t reflecting anemia,” I answered.

“Blood tests are piss poor diagnostic tests.  Eat a cheeseburger.  If you feel better, my theory is right.”

I scowled for a moment and then instantly smoothed my face, not wanting to add unnecessary wrinkles to my battered body, still scarred from surgery.  Since my thyroid surgery, I had been doing a little better, but lately I’d been headed downhill.  Although I’d tried to hide it from everyone around me, I could no longer hide it from myself.  The little bit of resistance from the doctor pressing down gently on my arms shouldn’t have sent them straight towards hell.  Going up a flight of subway stairs shouldn’t give me muscle cramps.  Warrior II shouldn’t make me lose feeling in my hands.  None of that should be happening.  I was supposed to be “good” and healthy now.  The half of my thyroid that had the tumor had been removed, my blood tests were normal and the right side of my thyroid that remained had a very small shadow on it, but it was most likely cyst and nothing major…

Or so I thought.

I rolled my eyes as I recounted my medical history to the confused medical student once more, so that she could present it to the doctor again, as three of her peers watched on.  I knew the order in which the doctor wanted the information presented,  and it was all I could do to keep from blurting it out to put the poor girl out of her misery and get the show on the road.  I kept my mouth shut and stared at the ceiling as the endocrinologist quizzed the student a few more times before she turned her attention to me.

“Your calcium is low,”  she remarked.

This was news to me, as I’d been told by the surgeon’s PA that everything was “fine”.  “What’s that mean?”  I asked.

“You’re not eating enough dairy products,” the doctor said absentmindedly, as she scrawled some things in my chart.

Slightly taken aback by her answer, I tried not to react defensively.  “My eating habits have not changed since my surgery.  I don’t understand why my calcium would be low when I haven’t changed my calcium intake,” I replied.  She was all ready halfway out the door.

“Eat Tums and I want to see you in a month.”

The door closed and she was gone.

I rose from the exam table, slowly and deliberately putting one foot on the ground at a time.  “Allow the Earth to support you,” I murmured to myself, feeling the ground beneath my feet, solid and steady.  I took a few deep breaths and exited the exam room; as I reached the door to the lobby, a nurse called out to me about my next appointment.  “Mami!  You need to come back in a month!”

I glanced over my shoulder, calling out that I was switching doctors and I’d follow up at the new clinic.  Then I hightailed it home.

A few hours later, after consulting with Google, research articles, my surgical pathology report and a childhood friend who’s now a doctor, I had the situation figured out.  And it had nothing to do with eating more dairy, but everything to do with vision…20/20 vision, the kind hindsight offers.

For all intents and purposes, my surgeon sucked.  He had inadvertently removed or damaged my parathyroid glands; the tiny glands by your thyroid that make parathyroid hormone (PTH), which controls your body’s calcium.  We have four of them and they have variable anatomy, so even an experienced surgeon can mess up and remove them during a thyroidectomy.  I didn’t have a thyroidectomy, though.  I had a hemithyroidectomy, which means only part of my thyroid was removed….which means that the likelihood of a complication like hypoparathyroidism should be substantially lower.  Worse yet was that no one had ever told me this was a possible complication, even though the surgeon was aware that my parathyroid glands had been removed, as it states clearly on my pathology report that parathyroid tissue was present in the sample submitted after surgery.

The anxiety, depression, fatigue, bruising, muscle cramps and tingling I was experiencing all made sense now.  I wasn’t anemic, but I wasn’t losing my mind either.  (Having never experienced anxiety attacks before, the first time I had one, I was very concerned I was losing my sanity.)  I was hypocalcemic.  Because of human error.

And because I’m human, I’m still a little bit upset over this latest development.  I’m upset with the surgeon, but more importantly, I’m upset with myself for not being more vigilant.  Why didn’t I ask about complications?  I’d never even asked my surgeon how many of these operations he’d done.

I was so attached to the outcome (getting the tumor out) that I never really considered the risks, because I didn’t see myself as having any other options.

Research I read about thyroidectomies after the fact suggests:

  • The acceptable rate for hypoparathyroidism is 1%, but studies show that this is only the case when a surgeon has performed 150 or more thyroidectomies per year; yet the same studies show that 85% of surgeons performed this operation less than every two weeks!
  • 60% of surgeons never mentioned this as a complication.
  • If surgeons were asked how often they performed this surgery, 55% of them overestimated by twofold or more.
  • Surgeons who perform this surgery one time per month or less are 1000 times more likely to inflict hypoparathyroidism on their patients.
  • Patients whose surgery was done by an otolaryngologist (an ENT) were 6 times more likely to be affected as opposed to those whose surgery was done by a general surgeon

Had I known this, I would have asked my doctor all of the above questions, and I most likely would have elected to have another surgeon do the operation.  But I unwittingly let fear run the show.

Fear is the voice that tells you that you don’t have any other options, and fear is a f***ing liar.

Any time there is an attachment, there is a fear.  I was attached to the idea of surgery sooner than later because I was fearful of allowing the tiny tumor to continue its tyranny on the beautiful butterfly shaped gland in my neck.

The good news is that the hypocalcemia and hypoparathyroidism may be transient, meaning they may not be permanent.  Until we figure out whether or not this is the case, I’m on calcium and vitamin D supplements.

And lots of vitamin F:  Forgiveness.  Although I fancy myself an extra terrestrial, I’m human.  That means I will not be perfect and I will make mistakes.  I messed up.

It’s like that old saying says-  Just when the caterpillar thinks the world is over, it becomes a butterfly. I’m not blaming myself at all.  I’m taking accountability and empowering myself- my self, not my fear.  I will not feed fear.  That jerk job can starve to death.

Speaking of food, today when I came home from Zumba class, I had a cookies & cream milkshake and was able to consider it medically necessary.

That’s kind of sort of a little bit awesome.  I could get used to that if I absolutely had to.

I think.  Maybe. Ask me in a month or so, because I don’t want fear to delude me into thinking I don’t have any other options. In the meantime, I shall have no shame about having that extra scoop of ice cream with a cherry on top.

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  1. I feel the same way with the onslaught of health problems I’ve had in the past six months or so. It seems like everything is a symptom or a complication of something, and that I always feel doomed. No doctors seem to care about what I have to say or are willing to offer a real solution or advice. I love your articles and they always make me feel less alone!

  2. April I feel your pain. I obviously don’t know what you have been through personally, but I was diagnosed with a pituitary tumor in 2007 when I was seen for migraines by a neurologist. I went and had a second, and third opinion, but in the end, I was just so excited to get the tumor OUT of me because I felt that it had to be the source of my pain. My mom and I did research to find an experienced surgeon, and even though we went to one of the best neurosurgeons in the country, he still messed up on me.

    I hold a lot of anger towards that man. It turned out I didn’t actually have any tumor, rather my pituitary gland was double the size it typically is in 17 year olds. In other words, it was perfectly healthy, and my migraines were being caused by something else. He removed 55% of my pituitary gland, causing it to shut down completely….leading to an awesome illness called Panhypopituitarism. (Essentially meaning that my pituitary gland no longer worked). The surgeon also nicked a capillary which almost killed me a month later. I had to have a blood transfusion and nearly died because I wasn’t producing any thyroid hormone, cortisol, ACTH, etc. etc.

    Good for you for switching endocrinologists like that. Early in my recovery I was too scared to do that, but now I understand that if a doctor doesn’t actually show concern for your case, then they aren’t worth your time or money, not to mention that they are probably missing things. Anyway, I just wanted to share to let you know that even if you had done your research and known what could have happened, things may have gone just as poorly thanks to human error. It’s so unfortunate and I’m still struggling to forgive myself and the surgeon, but in the end we need to just accept that it happened and make light of the outcome. Like how you can have milkshakes after working out :) I know personally I have gained a lot of knowledge about the endocrine system that I wouldn’t have otherwise known, and it sounds like you have too. All the best, and thanks for sharing!

    • Well when we came in for my follow-up a month after the surgery, he began with “so this is the first time I’ve ever messed up on one of these surgeries; these are routine for me as I do at least 10 a day for 3 years now.” He then said that upon receiving the pathology report that all the tissue they removed had been healthy pituitary tissue, he went to a conference where he met with 10 other well-known neurosurgeons (his words) who all agreed that given my MRI scans, I had a pituitary adenoma which was very large and they would all recommend surgery for removal. So basically he told me why he wasn’t at fault, and did not offer an apology.

      Then for the next few years I was literally too sick to pursue legal action, which I think I should have done and had a definite case for. My parents separated around this time too, so then I really didn’t have the means or resources to get a lawyer for my own case. Now the 5 year limit is up to pursue legal action….pretty lame! Anyway I’m glad I could share my story with you, not many people care to hear about it. I am actually really lucky because my pituitary regenerated so it’s about 80% back, and the only hormone replacement I have to take is for thyroid!

    • Elaine, what a horrible thing to go through! Was that considered malpractice or was it a “complication” of surgery? And thank you for taking the time to share your story; it was actually very inspiring to me. I hope you’re doing well now and that you have things back under control. The endocrine system can be quite the troublemaker when it’s acting up!

  3. I have had thyroid/parathyroid problems for over 20 years, and it constantly amazes me how little attention is paid to it by my doctors when I come in with problems, and how often it is actually linked. Thank you for raising awareness of this!

    • Hey Victoria- sorry to hear that you have these problems as well. Doctors really seem to overlook these things. How are you doing now? Let me know if you need any research; I have a ton of it, lol. :o)

  4. your articles are beautiful and inspiring!

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