Saturday, January 28, 2017

Another Chapter Begins: A Crisis and the New Normal

(Information about Secondary Adrenal Insufficiency begins at 2:30)

I began seeing a new endocrinologist two years ago, after my local doctor unexpectedly left the medical field. Most endos in my area are focused on diabetes or thyroid disorders and pituitary specialized endocrinologists are hard to find. So, reluctantly, I traveled back down to Houston, hoping that the new doctor I'd chosen would be able to help me once my pituitary gland showed signs of deficiency. The timing could not have been better.

During the first few appointments with my endocrinologist, he took inventory of all my symptoms and baseline lab results - most of which were rock bottom low and barely in the "normal" range. He also ordered a baseline ACTH stim test that returned to the normal range. I found it helpful to provide him with a graph of my previous labs from years past since I was a new patient to him. It was a useful communication tool when speaking about my history. I'd been having symptoms of hypopituitarism for about a year, but it was not reflected in my labs, so he assigned me to a three-month recall.

Last summer, my diagnosis changed when I met with my doctor to review my routine lab work. The first clue of hypopituitarism came when my previously stable T-4 labs showed a pattern of decline while my TSH was unchanged. The curious thing about this, the doctor said, is that when the T-4 goes down, usually the TSH will begin to rise. This was not happening in my case. He suspected my pituitary function was deteriorating and suggested I start taking thyroid medicine, and sent me for another ACTH stim test. The results revealed I have adrenal insufficiency (secondary).

I became ill with fever from an ear infection within a month of receiving this diagnosis and was in the ER for an ovarian cyst rupture (both happened the same week). Since I was new to treatment for adrenal insufficiency, I didn't updose sufficiently as I should have for sickness. As a result of this, I went into an adrenal crisis. I told the ER staff that I was newly diagnosed with AI, but they did not administer steroids. Although I was still very ill, I was released to go home after I received pain medication and x-rays. Within 30 minutes, my blood pressure plummeted to a dangerously low level, and I began vomiting and could barely walk and talk. My husband drove me back to the ER, my endocrinologist was contacted, and I was given a hydrocortisone bolus.  I stayed overnight as a precaution since this was my first encounter with an adrenal crisis.

So now begins the journey of living with adrenal insufficiency and adapting to medicating myself amidst life's unpredictable moments of sickness or crisis. I expected this to happen years from now. But, of course, I understood it was impossible to say what order my hormones would decline, but I thought I would have more time. I didn't expect adrenal insufficiency to be the first thing I'd get diagnosed with. On a good note, though - what a difference the medication makes! I feel normal again. My energy is good, and, most importantly, my mind is clear. I do have bad days, but thankfully they are few.

The past few months I've been adjusting to the new daily routine of hormone replacement and wearing a medical ID bracelet. My adrenal glands still produce some cortisol, but it is a meager amount. The medication is helping to restore or maintain a balance where my pituitary function fails.