Thyroid Storm: The Deadly Side of Thyroid Disease

Thyroid Storm Personal Story
I'm standing in an empty office room for privacy and feel my heart punching me through my chest cavity. My phone rings and I look down to see my doctor’s office number blinking across the screen. The life or death call has arrived. I answer.
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One moment I was living and loving life as a normal care-free 25-year-old and within a blink of an eye, I was faced with only 72 hours to live, fighting for my life against congestive heart failure with only 20 percent chance of survival.

I've been anxious all morning. Sweat drops soak my skin, and I'm unable to sit still for long periods of time. It's 11:30 AM on a Wednesday, and I've been fidgeting at my office desk for several hours trying in vain to get my mind off the call I'm expecting from my doctor. It's a call that very well may change not only the course of my day, but my survival hangs in the balance.

I'm standing in an empty office room for privacy and feel my heart punching me through my chest cavity. My phone rings and I look down to see my doctor’s office number blinking across the screen. The life or death call has arrived. I answer.

‘’Angie, it's Dr Mokotedi. My dear, I'm sorry to tell you, but I was right, the blood tests confirm you have congestive heart failure. You need to be hospitalized immediately’’.

A state of disbelief drives me to challenge the diagnosis.

My doctor does not have time to explain over the phone and quickly replies, ‘’You have Grave’s disease, caused by an overactive thyroid. Since the overactive thyroid has never been detected or treated, your condition has escalated into congestive heart failure. Your condition is rare but fatal. You don't have much time on your hands, as your other vital organs will soon start to fail too’’.

I put down the phone and stood lifeless against the cold office wall. The words ‘’heart failure—fatal’’ echo repeatedly through my mind, and I'm officially lost for words. The shock news renders me unable to move from the office room. My feet are heavy underneath me and my hands are shaking ferociously. After what seemed like hours, I plucked up the courage to gather my belongings from my desk and made my way to my car.

It takes me several minutes to compose myself as I contemplate how to break the news to my family. Knowing my mother will immediately spiral into hysteria, I call my sister instead, trusting her to soften the blow of the news to my parents. Of course, the strategy did not work and as I arrived home to pack for the hospital, my mother is standing in the hallway utterly beside herself. Like the rest of us, she is unwilling to accept her youngest daughter may have only a few days to live.

On arrival at the clinic I am met with more bad news; Dr Mokotedi has been fervently calling all major hospitals throughout Gauteng, South Africa to secure an open bed in the Intensive Care Unit only to discover there are no cardiac specialist doctors available. It's January fifth and most specialist doctors are still on Christmas vacation. In the meantime, I'm laying down in a medical cubicle hooked up to intravenous drips containing beta blocker medication in an attempt to slow my heart down. Time goes by as slow as molasses.

After a few hours, Dr Mokotedi receives the green light to admit me into Folateng, Charlotte Maxeke Johannesburg Hospital, a specialist hospital in Johannesburg, South Africa. Folateng is reserved for patients deemed gravely or critically ill, with admissions being limited to only thirty patients overall at maximum capacity. Folateng acts as a private highly specialized underground medical facility, often unknown even to South African citizens. After reviewing my cardiac test results, a team of specialists including endocrinologists and physicians at Folateng hospital agreed to take on my medical emergency, admitting me into the facility by afternoon. The rush of admission left me with little opportunity to ask questions about my medical condition, leaving me increasingly anxious as I watched several nurses surround my hospital bed, systematically hooking me up to several heart monitors.

My endocrinologist arrives and tries to conceal his concern by greeting me with an upbeat and ultra-friendly poise. Finally, Dr Lee explains my medical condition is called a thyroid storm or thyrotoxic crisis. The condition is an acute, life-threatening hypermetabolic state induced by excessive release of thyroid hormones. The thyroid storm is a consequence of untreated hyperthyroidism and invariably fatal if left untreated. Dr Lee played it cool, almost down-playing the bigger picture as to not arise further anxiety. His kindness and ever-calm demeanor comforted and helped me center myself.

I had no choice but to center myself - my chances of survival were slim.

Thyroid storm diagnosis is not straightforward as it is often misdiagnosed as sepsis or stimulants intoxication, a grave error often causing patients to die from multiple organ decompensation. I was lucky enough to be accurately diagnosed.

The strange symptoms I had been grappling with for over two months started to make sense. I was a healthy yet petite 110 pounds, and it took me by surprise when in late July 2014 I started to unintentionally lose a significant amount of weight, in a rather short period of time. Within a short two months, I was a shadow of my former self as bones protruded from every section of my body.

My skeleton appearance raised eyebrows with friends, family and co-workers; who came to the conclusion I may have an eating disorder. In contrast, my appetite was consistently sky-high, and although I was eating up to six times a day my body hardly stored the food and hunger pangs were never satisfied. The weight loss was fast and dramatic, by mid-2014 I weighed a bitter 82 pounds.

In addition, I developed daily tremors that began in my fingertips, traveling down into my left leg. My once luscious long brown hair was falling out by the clumps, eventually leaving bald spots on my skull. I battled with crippling fatigue and was often bedridden, too weak to manage basic daily activities. Rapid weight loss or the inability to gain weight is a hallmark feature of hyperthyroidism. In most cases, excess thyroid hormone fires your metabolism into overdrive, burning more energy than the body can meet. As the metabolism works at a breakneck speed, a patient will not be able to eat enough to keep up with it, and the body will begin eating itself leading to dangerous muscle and bone mass loss.

By late November 2014, my health woes escalated. Although I never had heart problems, I began to experience sporadic, painful shooting impulses in my chest throughout the day. The sensations felt like a bolt of electricity ripping through my chest and would often lose all feeling in my arms and hands. The sensations took my breath away as they lasted for several minutes, reoccurring throughout the day without any warning.

Hyperthyroidism is often a silent disease with most symptoms developing so slowly that most people, myself included, accept the symptoms as normal signs of stress, menopause or depression. Within a few days, I developed extreme swelling throughout my ankles and feet. At first, the swelling did not overly concern me until my feet and ankles swelled into a putty/mushy puffiness so severe I could not fit my feet into shoes and resorted to wearing only socks. The edema swelling worsened, as did the shooting pains in my chest. It was crystal clear there was something very wrong.

In a quest to get answers, I was pushed from one doctor to the next over a two-week period. I came no closer to finding a solution, as every doctor's appointment ended in more confusion and questions. Doctors struggled to accurately link any of my symptoms to a direct cause or illness. With no diagnosis and a body filled with debilitating symptoms, I felt helpless and scared. One morning while applying make-up I noticed a large lump across my throat. The foreign lump was unusually large and protruded from my neck, covering most of my outer throat area. Panic set in. Within a few days of discovering the lump, it had grown significantly larger, making breathing with ease and swallowing a challenge, as the lump was suffocating my throat airway. The lump was a goiter caused by an iodine deficiency or inflammation of the thyroid gland and is a tell-tale sign of Grave’s disease. The huge mass protruding from my neck confirmed to doctors that my body was fighting a mystery illness, and it was only a matter of time before I lost the fight.

It was January 2014. I had just turned 25 years old less than a month ago, only to find myself fighting for my life against a thyroid storm and congestive heart failure with only 20 percent chance of survival. I am now 32 years old, and remembering those last three days still blows my mind. I guess no one can prepare for death as it arrives mostly unexpectedly, however I still can’t believe how close I came to my final days, especially when I was so young. One moment I was living and loving life as a normal care-free 20-something-year-old and within a blink of an eye, I was faced with only 72 hours to live.

The thyroid storm was a touch-and-go emergency but after two weeks of intense medical intervention, I walked out of Folateng feeling like a champion, albeit a little bruised. I was on the road to recovery but was not in the clear as yet. The goiter mass was highly toxic and required aggressive treatments, either using radioactive iodine therapy or surgery. I was not a candidate for any treatment as yet because my thyroid levels were still too high to be considered safe for surgery.

Finally, after eight long months of thyroid and cardiac treatment, I received the good news that my thyroid levels and heart function were stable enough to commence surgery. Due to the severity of my condition and looming possibility of thyroid storm reoccurrence, I had no option but to remove my entire thyroid. I was relieved to know I was at the last stage of winning the war against my autoimmune disease and I eagerly awaited for the surgery day to arrive. The journey took its toll on me, especially emotionally. The dramatic events that unfolded left me feeling emotionally drained and in need of rest for my soul.

Despite my positive attitude toward the procedure, I was also terrified to undergo such major surgery.  But when the day of my surgery arrived, and I woke up surprisingly upbeat and calm. My family were considerably more nervous than I was, especially since my history of heart failure made undergoing major surgery a risky gamble.

Arriving at the hospital, I didn't have much time to ruminate on my fears of the procedure as I was quickly prepared for surgery, and before I knew it, I was being wheeled down the pathway towards the surgical room stopping briefly to wave enthusiastically at my mom and my sister as they struggled to conceal their emotions, both crying heavily while blowing kisses at me through the glass doors. The surgical room was sterile, with an icy frost in the air. In an attempt to ease my own nerves, I had a humorous chat with the anaesthesiologist and cheekily reminded him to use enough anaesthesia to ensure I did not wake up mid-surgery. After kindly reassuring me, he placed a mask over my nose and asked me to count down from ten.

All I could feel was thick, ice-cold air prickling over my skin, causing me to shiver as thousands of little goosebumps blotted my body. I could hear distant sounds of metal objects being tossed around, nurses speaking in mumbled conversation. It was music to my ears. I had made it out of the seven-hour-long surgery and as I came too, I felt the pain despite the morphine. But I welcomed the pain. This time it meant the pain stood for a part of the victory. You cannot know victory without some pain.

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