My Story: How I Was Diagnosed with Primary Aldosteronism

My whole life I've had super low blood pressure, but all of a sudden at age 35, I had hypertension. It happened overnight. One day, it was nice and low and then the next, it was high.

I always felt that the cause of my hypertension was hormonal. In fact, I knew there were adrenal tumors that could cause hypertension and encouraged family members who met the diagnostic criteria to get tested (which to this day they have yet to do!).

Doctors told me it was my weight. So I lost a huge amount of weight, exercised, ate right--the works-- and instead of that lowering my blood pressure, it actually went up! I needed a third medication.

When I asked about it, I was told, 'Oh that just happens sometimes.'

Here I was doing everything right only to have my blood pressure go in the wrong direction and when I pointed that out...

They moved the bar!

What I didn't know--during the ten years medicine failed to diagnose me--was that the adrenal tumor actually showed up on CT scan, but it was never noted in the radiology reports. Meaning, no one told me or my doctors. It was dismissed as a meaningless 'incidentaloma.'

Ten years later an endocrinologist told me it had been visible the whole time!

Around the eight year mark, I asked to be put on spironolactone. I have several endocrine issues and more than one adrenal issue, so I figured spironolactone would help just in general.

Suddenly, I had beautiful blood pressure. I didn't think I had PA because, as far as I knew, I had no adrenal tumor and my bp had never been super high, just difficult to control. Little did I know...

Anyway, fast forward a few more years when I was diagnosed with another set of tumors elsewhere and the adrenal tumor finally made it into a radiology report.

Ten years after it first appeared.

Did doctors finally diagnose me at that point? No! Of course not! They were still dismissing it as unimportant and no one was synthesizing the totality of my medical history.

However, I knew better, and once I knew I met the diagnostic criteria, I made them run the tests.

Sure enough...primary aldosteronism was and is my diagnosis.