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By Stephanie K. Smith, HoneyColony Original

NOTE: “Adventures in Endocrinology” chronicles my experience as an endocrine patient in relatively progressive Los Angeles. Getting a diagnosis and treatment may be even harder elsewhere. I hope my story provides an example of contending with chronic health problems that seem inexplicable. But in order to arrive at the present in a way that makes sense (and includes a 3-year-old son!), we must begin at the beginning…

The year is 2006. The show “Lost” has rendered network TV philosophical, The Ominvore’s Dilemma is a bestseller, and Justin Timberlake has just brought sexy back — only he seems to have skipped my house.

Lost In Misdiagnosis

I don’t remember exactly how I first realized I was sick. Maybe it was the decreased muscle tone. I had been a fitness freak since 15 — yet, here I was, in my late 20s, five to 10 pounds up and turning to mush despite five weekly workouts and a relatively healthy diet.

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Maybe it was the non-existent libido. I had always prided myself on having a man’s sex drive (more on that later!), but, increasingly, I had no interest in doing the deed. Worse still, I had lost the ability to orgasm, even with the white-hot rabbit cranked to full blast!

Most likely, however, it was the overwhelming exhaustion that clued me in. An active, energetic young thing, I found myself unable to get out of bed in the morning — and eager to crawl back in way too early for a single city girl accustomed to life in the somewhat fast lane. When I looked in the mirror, I was increasingly unrecognizable to myself. But to everyone else — including, as I was to discover, a host of medical professionals — I was a picture of better-than-average health.

Therein lies problem No. 1. If you don’t look like a big, fat, hot mess (or a frazzled, bug-eyed, semi-anorexic one), nobody suspects an endocrine problem.

Sure, I had gained a few pounds, but I wasn’t technically overweight. Yeah, my sex drive was shot — but I’d been on the pill since my teens. And OK, so I was tired. I was a 20-something urbanite with an active social life, a day job as a copywriter, and aspirations of writing for television that kept me up late nights. Welcome to the world of adult stress, doctors told me. Had I considered antidepressants?

The truth is, I had. In fact, there was a point that summer where I became convinced that my lethargic, hopeless state would do me in before 30. Doctor after doctor said I was “fine” — that my problems were in my head. However, a family history of mental illness and keen intuition told me it was more than stress that left a little too much of my long, brown hair on my bathroom floor every morning. “The blues” weren’t causing simultaneous dry patches and painful, cystic chin acne. Nor were they stopping my period — for nine months. And no matter what my (male) gynecologist suggested, this wasn’t just severe PMS in the aftermath of a difficult childhood.

I had been to a chiropractor for my back pain. An orthopedist for bursitis in my hip. An optometrist for floaters in my strained left eye. A psychologist to discuss my thoughts. And an acupuncturist for the whole kit and caboodle. I had been prescribed Synthroid for hypothyroidism, Spironolactone for high testosterone, and Colace for constipation. I was also mistakenly told I had polycystic ovaries. I had even begun taking Chinese herbs for vitality.

But it wasn’t until I took it upon myself (on a hunch) to visit a female endocrinologist for what I had come to think was low testosterone (that pesky, non-existent sex drive was really getting to me, I tell you!) that the (first) real culprit surfaced.

Prolacti-huh?

One simple blood test revealed I had a prolactinoma. Translation? A tumor on my pituitary gland (at the base of my brain!) was excreting a hormone called prolactin. Produced in high quantities by pregnant women, prolactin kills not only sex drive, but affects all hormones, damaging your (or in this case, my) muscle strength, bone density, skin, eyes, hair, energy and fertility — for starters. And apparently, despite what you might assume based on my taking nearly two years to get an accurate diagnosis, one in five people have a a prolactinoma!

Due to their all-encompassing nature, endocrine disorders are often extremely difficult to diagnose. One hormone imbalance commonly leads to another, while food allergies and autoimmune disease further complicate matters, though it’s all a bit chicken-or-the-egg in the diagnosis phase. For example: Did chronic gut irritation from dairy consumption cause an autoimmune problem, or did the autoimmune problem lower lactose tolerance?

This all begins to make sense when you consider the interconnectedness of glands with metabolism. For instance, the pituitary gland plays a role in regulating estrogen, testosterone, progesterone, cortisol, and the thyroid, all of which have simultaneous effects on each other — i.e., cortisol spikes when the body endures even low-grade allergic reaction on a regular basis. Sadly, it’s rare (in my experience) for Western-trained doctors to take a comprehensive approach to whole body health — which, I suppose, is one of many reasons we’ve all come to the hive.

Anyway, back to my initial diagnosis. Prolactinoma. Good news, I thought! After all, something so common should be easily treatable, right? An MRI confirmed the doctor’s suspicion and ruled out the need for surgery. No big deal. I would take a pill, have my blood monitored monthly (for three years, tops), and I would be good as new.

Oh, that my adventure should end so simply. But alas, such was not the case. For a few months after beginning treatment with a tiny but expensive pill (Dostinex) to inhibit prolactin production, things were better. I got my period, and regularly. My energy improved. I wasn’t quite so moody. But there was still that lingering problem of libido and a live-in boyfriend who was losing his patience almost as fast as I was.

Little did I know my initial diagnosis was just the beginning.

Next up: my synthetic hormone roller coaster (including a shot in the ass — literally!), ruminations on insurance coverage, and the importance of participating in your own treatment.

Photo by Violet D’Art/Flickr.

This Post Has 4 Comments

  1. Yes, many of these symptoms ARE related to the thyroid gland which runs EVERYTHING! The problems are with the general medical system. GP’s dismiss symptoms after general bloodtests and are willing to write scrips for any other kind of drug, when detailed blood tests can reveal a lot. my doctor refuses to do anything. I am stuck in the HMO system and can’t get a referral to an endocrinologist! I went gluten-free and that has eliminated soooo many symptoms caused from inflammation in the gut!

  2. Thank you for sharing this! It’s so important for pl to understand everything in the body is connected. I’ll be looking for Part II!

  3. Excellent article!! A lot of these symptoms could and are often attributed to hypo/hyper thyroidism… thus proving the importance of a full and thourough endocrine analysis.

  4. Ugh…sounds an awful lot like me! When is part 2?? I’ll be waiting. 🙂

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