It was October, 2013. For the second time in a week, I found myself snaking a clog out of the shower drain. I was horrified by the massive, slimy monster I retrieved. More so, I was haunted by what it meant.
I maintained a thin state of denial, diagnosing myself with a condition called “telogen effluvium”, like the first time I had massive hair loss. Telogen effluvium (TE) occurs when you experience massive hair loss in response to a stressor occurring three to six months earlier. The timing was right for this to be a TE episode, since I was sick with a respiratory illness the previous June.
My first hair loss episode happened in 2010. A dermatologist, finding nothing wrong with my scalp, diagnosed me with possible TE. He also said my hair loss could be due to tension from headband use. Just to be sure, he told me to report the hair loss to my primary care physician. So I did. My PCP concurred that it could be TE or headband tension but sent a plethora of blood tests to cover his bases.
The blood work opened a gate to a difficult path and a hormonal nightmare. My prolactin level was very high while my cortisol, DHEA, and growth hormone levels were very low. These indicated the presence of a tumor. I was immediately referred to an endocrinologist and scheduled for an MRI. The tumor, though small, stood out as if to say “here I am!”
Low DHEA levels cause hair loss. So much for TE and tension-related damage.
Although pituitary tumors are usually benign, there is only so much space inside the skull. All tumors of the brain have to be carefully monitored and treated or they will cause pressure. My little tumor was suppressing some of the other functions of the pituitary, putting me in a life-threatening situation. The doctor started me on a drug to shrink the tumor and put me on oral steroids.
Being on oral steroids meant I had to wear a MedicAlert bracelet and carry an injectable “rescue dose” everywhere I went. The rescue dose would be needed in the event I contracted a vomiting illness. If my system is suddenly cut off from the hydrocortisone, I will go into a crisis and possibly die within two days. Sooner if I have a fever. A vomiting illness means a hospital stay until I am able to absorb the pills. The thought of contracting a vomiting illness under these conditions created a severe phobia of social situations. Even for non-vomiting illnesses, like head colds, I had to follow a formula. Double up my oral dose if I have a cold. Triple it and get to my PCP if I have a fever. Make sure the anesthesiologist and surgeons know my condition before any surgery, so they can give me a stress dose. Double the dose on days when I do distance races or hard training. It was a real headache.
The Medic Alert bracelet and the rescue injection each served to remind me I am no longer completely healthy and that I don’t have as much control over my body as I thought. They served as markers of weakness and made me feel chained.
Yet a few days after diagnosis I realized that because I don’t have complete control over my body, I have no clue what other illnesses or problems might be brewing at any given time. I had a paradigm shift. Suddenly, there was no room for negative things or people in my life. I focused on the things that add value and meaning, while breaking free of my selfish, self-loathing, and depressed mind set. I even started to write a book about my experience.
People who had my type of tumor assured me theirs was treated and cured to the point where they were off all medication, within a two year period. The doctor herself expected me to recover quickly. That helped me maintain a positive attitude too. By fall of 2012, I was deemed well enough to come off the steroids and I even did the Harrisburg Marathon without causing a drop hormone levels. My cortisol level remained good and I had a full head of hair.
Things went well for about seven months. I had tough colds in April and June, but my cortisol level was still normal. Then my hair started falling out again in September. Once again, I thought it had to be TE or the tension of ponytails and headbands, since I assumed all my hormone levels were good.
I finished the Steamtown Marathon in Scranton the second weekend in October, and I felt fine afterwards. By that point I accepted my hair loss as “the way it is”, bringing middle age in as a factor. I could see my scalp this time around and contemplated buying a wig.
The following weekend, I did my last long session before the New York Marathon and again felt fine afterwards. The day after that session, I started taking a medication to treat a longstanding hoarseness issue as a part of a treatment regimen to get my singing voice back.
I had a terrible reaction to the drug. I experienced what is known as a die-off reaction. Die off reactions are the result of a massive immune system attack against the offending organism or tumor, and the effort to expel the toxins released by the invader. Six days into this aggressive therapy, I started to feel very weak. One night I was at work and experienced a “panic attack” that lasted most of my shift. By morning, my thinking was cloudy and I started retching. I was not well enough to drive home, so I ended up in the emergency room.
My cortisol level had bottomed out. It was the Wednesday before the race, and I was forced to drop out of the New York Marathon.
I cannot tell you how disappointed I was. My two year window for a cure was almost closed, yet my pituitary failed me at the last minute. I needed an emergency injection of hydrocortisone and was put back on the oral steroid. I had to order another MedicAlert bracelet and carry the rescue dose again. Both serve as tokens of weakness and remind me of constant threat.
The endocrinologist is puzzled. She thought maybe it was a one-time episode and rechecked my levels a month later. There was no improvement. A second month later, on the two year anniversary of my diagnosis, there was still no improvement. I was placed on a higher dose of steroid. Today, February 27, 2014, I learned my DHEA level is also much lower than it was at the time of diagnosis. On almost all fronts, I am worse than I was two years ago.
My gut feeling about the clogged drain was right. It seems like such a trivial thing, yet look what it meant for me. This has forced me to question whether or not I will ever be cured. The benign, “easily treatable” tumor and its insane hormonal influences might very well be a thorn in my side for many years to come, wreaking havoc on my body. The low DHEA and the steroids are sapping calcium from my bones, as we know from newly diagnosed hyperparathyroidism. I am only forty six and already a high risk for osteoporosis on account of all this. The drug they gave me to shrink the tumor has most likely caused scarring in my lungs, which is interfering with my heart function. I have dreamed of the New York Marathon for a long time, a race that’s very hard to get into. I am beginning to think it will never happen. I wonder what else “won’t happen” as a result of this nagging problem.
Telogen effluvium. Head bands. Clogged drains. Disrupted life.