Full Disclosure: I'm half Greek and half Italian, therefore I am hairier than many other women.
When I was 15, my mom thought it might be a good idea to have me get laser hair removal on my face. We went in for the evaluation, and the dermatologist said that I should get my hormone levels checked first, just in case there was an underlying issue. I also had really bad acne at the time, so she thought maybe things were a bit wacky.
I met with a pediatric endocrinologist and had a ton of blood work done. Based on all that blood work, the endocrinologist diagnosed me with Congenital Adrenal Hyperplasia, an adrenal failure that is genetic (no one in my family has ever had it). It is supposed be present from birth, although the type she diagnosed me with doesn't become apparent until puberty. It is also 100% NOT curable. Remember that part, it's important.
The only treatment for CAH is steroid medication, taken daily. The biggest issue with CAH is that because the adrenal glands are malfunctioning, if a trauma were to occur, a person with CAH would go into shock (I had never had an issue with going into shock).
The steroids did nothing for my acne, or body hair. In fact, the only thing they did was make me tired. I took the steroids faithfully for years, assuming my doctors knew what they were doing. They took blood tests every few months. They were supposed to use those tests, and my reporting of symptoms to monitor my steroid dosage.
When I started college, I had to switch to an endocrinologist for adults. She was frequently late for my appointments (like, hours late), and she did not seem to hear my complaints. She would just write stuff down, and tell me to up my steroid dosage.
During that year, I had issues with heart palpitations and fainting. Things that were never an issue in my life.
When I went home after my freshman year of college, I was exhausted. I slept all the time. I just couldn't bring myself to do anything.
I went back to school, and reported all this to my endo, so upped the steroid dosage, again.
Things got worse. I slept more hours of the day than I was awake. I missed almost all of my classes. I missed work. I was like an elderly person on the verge of death.
Mr Headless (at the time just "Boyfriend Headless"), wanted to go with me to my next appointment. It was a bone density scan appointment (large levels of steroids will cause osteoporosis). While he waited for me to come out, he found a pamphlet about DHEA levels, and how the levels of DHEA are directly related to life function.
DHEA is produced in the adrenal glands. Unless the adrenal glands have been forced into a state of atrophy due to steroid medication. The more we read, the more it seemed that this was the problem. I was running out of DHEA in my body.
We were going to ask about my DHEA levels at my next appointment with the endo. But there never was another endo appointment. I got a letter a few weeks later saying that she was no longer seeing patients, and that I needed to find a new doctor.
When I went into my appointment with my new doctor, the nurse practitioner in the office looked over my paperwork. She was startled to see the dosage of steroids I was on. She said, "that level of steroids is appropriate for a 300 lb man, not a 100 lb girl!" Then she added, "also, I've looked over your old blood work, and I'm not sure you ever actually had this disease."
They weaned me off the medication, so as not to shock my body. When I was completely off, they retested me. I didn't have CAH. I never had. I had been over medicated for a disease I never had for over five years. The doctor said I was, "borderline, at best." She would never have made a positive diagnosis based on the results she saw.
The doctor said, "If you had continued on that level of steroids just a few months longer, you would have died." My DHEA levels were in the single digits. My body was shutting down. I would have died.
But I didn't die. That letter saved my life. That perfectly timed intervention. That divine act.
No comments:
Post a Comment