Patient Stories

Primary aldosteronism affects men and women. It is estimated that the majority of them require medical treatment, and that 30% of patients can be treated surgically. So far, most stories submitted to the Foundation are those of female patients, and most underwent adrenalectomy. These proportions are not representative of the actual distribution of primary aldosteronism in the general population. However, all stories accurately depict the lived experiences of patients with the disease, particularly with regard to signs and symptoms, standards of care, and the impact on patients’ life of diagnosis and treatment that are delayed for years, if not decades.

Diana

Diagnosis:
Bilateral disease

In 1998, at 41 years of age, my blood pressure began to rise. By 2001, I was in the 140/90 range. My primary care physician was concerned, and insisted we try medications. These began with hydrochlorothiazide (HCTZ), a regular diuretic. It caused muscle spasms and muscle pain to become worse. To this were added various classes of antihypertensives, in combination with HCTZ or alone. None effectively controlled my blood pressure.
Meet Saudra

Diagnosis:
Unilateral disease

The signs and symptoms that I noticed initially in 2005 were weight gain and lethargy. I brushed it off. I was graduating from USC in 2006 and wanted to focus on that landmark. I’d taken a long hiatus from attending college, had finally returned and I wanted to enjoy that landmark. I began to experience body-wide muscle aches, muscle spasms and pain for no apparent reason. I noticed that my blood pressure began to get elevated for no reason.
Evelyn

Diagnosis:
Unilateral disease

I do not know for how long I had primary aldosteronism. Looking back, I would say that at least the last 2 years I had felt extremely tired. My weekends would literally go to regain energy and I had headaches a few times per month but never thought it was anything else than normal stress. What I know is that I was constantly tired and low on energy. I never suspected I had a health issue. I had never been diagnosed with any disease in my life and I only saw my doctor if I had a flu or something mild like that, so I felt very healthy until that point.
Tanya

Diagnosis:
Bilateral disease

In 2013, I experienced heart palpations and tachycardia one afternoon and drove myself to the ER. I knew that something was not right and was worried I might be having a heart attack.  I was hospitalized for 2 nights for testing, including a search for a Pulmonary Embolism, which was negative. The sole anomaly that was found was low Potassium – 2.7. At discharge, I inquired about why I would have low Potassium and the staff doctor said, “you’re 44, maybe your kidneys are just old.”
Meet Marianne

Diagnosis:
Bilateral disease

In my early 30ies, I developed irregular heartbeat, and was found to have mildly elevated blood pressure. My cardiologist prescribed a minimal dose of a beta blocker (Carvedilol, 3.125 mg/day). The irregular heartbeat disappeared, my blood pressure stabilized, and everybody applauded this miracle. Little did I know I actually had PA and would have to wait another 2 ½ decades before being diagnosed.
Liberty

Diagnosis:
Unilateral disease

I had not experienced any obvious symptoms before being diagnosed with Conn’s. In 2014, at a routine appointment with my GP at age 36 (about 18 months after the birth of my second child), I was found to have high blood pressure, purely “by accident.” The doctor asked me to come back to have it checked again and, on the second visit, it was high again and subsequent tracking of my BP at home revealed it to be consistently high.

Follow Us On

©2021-22 Primary Aldosteronism Foundation — All Rights Reserved

The Primary Aldosteronism Foundation is a registered 501(c)(3) public charity. Donations are tax deductible in the US.

©2021-22
Primary Aldosteronism Foundation

The Primary Aldosteronism Foundation is a registered 501(c)(3) public charity. Donations are tax deductible in the US.

Follow Us On