Chapter 1: Four Doctors, Two Benzodiazepines, and One Bag of Lemon Drops
Sounds funny, I know. But this is how my journey with Graves disease began. It’s also when I realized that I needed to take control of my own health. What follows is the first chapter in the story of what happened.
First, a little background information on me. I am 45 years old and prior to my diagnosis of Graves disease had no medical history. I was the picture of health. I was never sick, had no allergies to food or medications, always had blood pressure in the range of 90/60, have been 5‘3“ and 113 pounds for the past 20 years, was only in the hospital to deliver my two children, never broke a bone, have only one cavity, and never took any vitamins, supplements, or medications besides the occasional ibuprofen for a headache…..all which made the following events especially traumatic for me.
To begin with, over the course of several months my hands began trembling. I attributed it to stress, too much coffee, or both, and tried to convince myself that it would pass. I don’t really enjoy eating and had always been thin. My mind toyed with the possibility of low blood sugar being the cause of my shaking hands, and so I would try to be mindful to eat regularly. However, I eventually reached the point that my hands would shake so intensely that I could not get a fork to my mouth and could not drink out of a cup without a straw. My work as a nurse was affected because I could not write with a pen, or take blood pressures and temperatures. I did not want to go to the doctor. I was in serious denial.
I was too busy to be sick. I was working, home schooling two children, attempting to start a business with a friend, and running a household. I didn’t eat well or sleep well. But so what? I thought….wasn’t everybody stressed out? Didn’t everyone wish they had more time to sleep or more time to eat healthy meals? This is normal, right? Looking back, the signs of self destruction were there. I knew they were there…. but I ignored them out of fear.
One evening in May of 2013, I was at home with my husband and children. It was a Saturday night and I had just finished taking a shower. I had on mismatched shorts and a T-shirt, no socks, and my long hair was still wet and clinging to my back. I sat down with my husband to have a light dinner, just a little sandwich. As I began chewing, a strange kind of tingling feeling came over the left side of my face. I thought maybe I had bitten down on something unexpectedly hard. My one dental crown is on that side and I thought maybe it shifted slightly. I swallowed, took another bite, and the left side of my face went completely numb. My first thought - stroke! I know, I know…..so dramatic…but I’m a nurse and that’s the way we are. I dropped my plate, ran to my bedroom mirror, and what I witnessed then was truly horrifying. My face was visibly expanding. Think of what a balloon looks like when it’s being inflated. That was my face. In that moment of utter terror I thought it wasn’t going to stop and my face was going to explode right there in my bedroom in front of my family. What would make it stop? Ice! Ice would stop the inflammation! Never have I put together an ice pack from ice cubes and a plastic bag so quickly! I slapped it to my face, but it didn’t help. I looked at the horrified faces of my family and only said one thing, “I’ve gotta go!” In an instant my husband understood exactly what I meant. I needed to go to the ER. We broke every moving violation but we got there in less than five minutes. And there I stood in the ER in my bare feet, pajamas, with soaking wet uncombed hair and an ice pack pressed against my face that was now almost completely melted and dripping out through the zipper seal of the plastic bag down my neck. I told anyone that would listen that I was a nurse. I figured it might get me in to see a doctor a little faster. To my surprise….it actually worked.
A nurse took my vitals. My blood pressure and pulse were elevated, but that was to be expected under the circumstances. I then was ushered in to see the doctor, who I will call Doctor Number One. With only so much as a glance at my face and a quick look with a flashlight in my mouth, she diagnosed me with a stone blocking one of my salivary glands. Her recommendation to me was to suck on some lemon drops to increase the flow of saliva to dislodge the stone, and assured me that it would eventually resolve on its own. I looked her right in the eye and asked, “That’s it? I’m not buying it.” I mean really. The whole thing was just too crazy to have such a simple answer. I thought…no way! There has to be more to this. There has to be something seriously wrong with me. Isn’t a stone in your face the craziest thing you’ve ever heard? I thought so. And so did everyone else that heard about it. Nonetheless, I took her at her word, albeit uneasily, and went home to suck on my lemon drops. I received my discharge paperwork explaining my diagnosis of sialolithiasis and instructions to follow up with my primary care physician within two weeks. I figured it was a one-time thing and it would never happen again. Wrong.
One day while waiting for my two week follow up appointment, it happened again. As someone who never really enjoyed eating, now I was absolutely terrified to eat at all. I called my husband at work, crying. Then I made an emergency appointment with my primary physician’s office. The covering doctor would be able to see me that day. The doctor, who I will call Doctor Number Two, took one look at my face and referred me to an oral surgeon. I was also visibly upset and trembling. I took this first opportunity with a physician to explain to him the symptoms I had been experiencing….the shaking, inability to sleep, et cetera. He told me I had anxiety and handed me a prescription for Xanax. Did he listen to me at all? Did he investigate with lab work or anything? No. The skeptic in me thought it was just so typical. I was instructed to fill the prescription and come back to see him after the appointment with the oral surgeon. There was no way I was taking Xanax, but I obviously needed to see the surgeon about my mouth. So I went.
Doctor Number Three, the oral surgeon, could not actually see the stone on the x-ray but proceeded to open the duct of my salivary gland to allow the stone to pass on its own. He squeezed and manipulated my cheek to assist. One x-ray, a needle, and a relatively quick procedure later, he gave me his recommendation…..lemon drops. Again with the stupid lemon drops.
Thankfully, I had no recurring episodes and I returned to see my primary doctor as directed. This time I got to see my doctor and not the covering doctor. I will call him Doctor Number Four. At this point, I knew something was definitely wrong with me. I knew it in my gut. Again I explained my symptoms, my feelings, and my concerns. His recommendation….Valium. No way was that happening. I guess the frustration and urgency for answers showed on my face, because we discussed it further and he wrote a prescription for lab work. If there is one thing I really dreaded, it was having blood drawn. However, I knew it was absolutely necessary. So I went.
Three days later I received a phone call from the nurse at his office. She stated my liver enzymes were elevated and some of my labs were “off”. What? What does that mean? How can that be? The nurse in me desperately tried to make the mental connection between stones and liver enzymes. I came up blank. I asked if I could stop by the office to have the doctor explain this to me. He was kind enough to see me.
I sat down in an exam room and waited. My husband, thankfully, was able to come with me and was waiting in the waiting room. The doctor came in holding a copy of my lab work, which I never asked to see. He explained that my liver enzymes were elevated and some of my other labs were out of range. Without any hesitation or thought to how what he was about to say was going to sound, he blurted out, “I believe you have MS or early Parkinson’s. I can’t help you with this. I am referring you to an endocrinologist.” I was shocked and devastated. As a nurse, my mind briefly conjured up pictures of wheelchairs and diapers, and then all thought, emotion, and anything else I believed made me who I am was drained from me in an instant. I just sat there. He handed me the referral to the endocrinologist, the nurse handed me a tissue, and my husband was handed what was left of his wife. I was not just sick. I was really sick. Now what?
Life Lesson #1 - If your gut is telling you something is wrong, it probably is, and you need to do something about it, sooner rather than later.
Thyroid Note #1 - Stone formation is related to autoimmune conditions and a hyperthyroid state. The reason for this is that untreated hyperthyroidism can result in the complication of dehydration from excess heat, excess sweating, and diarrhea. Dehydration then causes thickening of mucus, cellular debris, calcium and magnesium phosphates in the salivary glands, which in turn forms a stone.
- Dorian A., RN, CHLC
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