Tanya

Meet Tanya

Tennessee, USA

Diagnosis: Bilateral disease
Years to diagnosis: < 5
Treatment: Medication

Before Diagnosis

I was diagnosed with Primary Aldosteronism in the Fall of 2015, but the red flags started a couple of years earlier.  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.” I never forgot that statement, and I remember thinking that his response seemed dismissive and, perhaps, negligent. My kidney functioning and labs were all normal.

Over the next couple of years, I seemed to do okay, but experienced random heart flutters and unusual “panic attacks,” or anxiety episodes which had no real trigger. In the Summer of 2015, I started the “Whole30 diet.” On day 26, I experienced another tachycardia incident, which started the journey toward diagnosis. At each subsequent visit to the ER during that summer and early fall, my potassium was consistently low. The ER doctors and my PCP, at the time, were prescribing me enough potassium chloride (KCL) to bring my potassium level within normal range, only for it to fall dramatically in short order, and the cycle would start again.

I had been diagnosed with high blood pressure in my mid-20s, when pregnant with my only child and I developed toxemia; so, I had been on the same blood pressure medications for 20+ years; one of which was hydrochlorothiazide (HCTZ) – and I was not aware that this particular drug was exacerbating my potassium loss. When I did not receive any real answers about why I was losing potassium so frequently and believed the treatment was only a band-aid, I sought out a new PCP. I was, by happenstance, referred to a hypertension specialist/internist. At my first visit with this new doctor, he stated: “have you ever heard of hyperaldosteronism?” I had not. He said: “any time someone has high BP paired with low potassium, this can be the reason,” and he wanted to run tests for confirmation.

An important aside to note: tachycardia was not the only symptom that I experienced during the “episodes,” but it was the primary symptom that caught my immediate attention and forced me to the ER because I was unable to control it. At its highest, I recorded my heart rate in 170s/bpm.  I experienced many other symptoms which, until diagnosis and further research, I was not aware were associated with hyperaldosteronism, such as: fatigue  – overwhelming, could not get off of the couch to go anywhere, totally “worn out;” brain fog – inability to concentrate or stay focused, loss of words or phrases, inability to get normal workload completed; muscle cramps; frequent urination and nocturia; and, unusual metallic taste in mouth that would not go away.

Diagnosis

My diagnosis of primary aldosteronism was very simple process, likely due to the amazing internist who suspected it immediately upon reviewing my symptoms at our first visit. I recall that he sent me home with a 24hr blood pressure monitor, ordered specific labs (Aldosterone to Renin Ratio was one), and ordered a CT scan with contrast of my adrenal glands. At my next visit, he stated that based on the results of these tests, I was “a poster-child” for this disorder, noting that the CT scan indicated an adenoma on my right adrenal gland, as well as bilateral hyperplasia.

Treatment

The doctor’s initial medical regimen included spironolactone 25 mg. He took me off of the HCTZ that I’d been taking for many years. He continued with metoprolol. A few weeks later, we moved from spironolactone to eplerenone, which I seemed to tolerate better with fewer side effects. At a subsequent visit, he added a calcium channel blocker (Felodipine) to assist with my blood pressure, as the eplerenone did not seem to be doing that portion of the job (although it did seem to help control the potassium loss). We did not discuss a low-sodium diet, and I did not discover the DASH diet for a few weeks following diagnosis. However, once I understood how sodium was playing a role in potassium and magnesium (MG) loss for me (aside from the autonomous aldosterone excretion), I began researching and teaching myself ways to modify my daily intake and diet. My pantry was given an overhaul, and I discovered how to eat out at (a few) restaurants safely.

Since Treatment

Fast forward to 3-years post-diagnosis, in 2018, I experienced a sustained pattern of low potassium, despite now taking a higher dosage of eplerenone, and it was discovered that my magnesium was repeatedly low as well. The doctor added over-the-counter MG oxide to my medicine regimen, going as high as 3,200 mg/day. This seemed to exacerbate the MG loss and I was unable to get my potassium or magnesium within normal range. I was referred to a hypertension specialist at Vanderbilt Hospital, who recommended an adrenal vein sampling (AVS) to rule-out the adenoma vs. bilateral hyperplasia, reporting that an adenoma would require an adrenalectomy. The Vanderbilt doctor made some additional medicine changes: adding potassium chloride (I prefer the liquid form) and amiloride, and changing from MG oxide to MG gluconate – all of these modifications made incredible strides in my health and overall well-being. My labs returned to normal. Finally, the AVS was successful, highlighting that the adenoma was not actively excreting aldosterone and confirming that the bilateral hyperplasia was the reason for my symptoms and diagnosis. I have not needed any new medicine changes since 2019 following the AVS.

At regular check-ups with my original internist, my blood pressure is stable (albeit, a little high due to white coat syndrome). At home, my blood pressure fluctuates some, but generally remains 130-140s/70-80s, and my frequent labs are within normal range for both potassium and magnesium. I remain faithful to a DASH diet, and, now at 52 years old, I feel really good more days than not.

Since 2019, the negative symptoms that I discussed earlier have basically diminished or disappeared. I rarely experience any major symptoms. I watch my heart rate very regularly. I understand my personal serum level needs now, and having a low-normal potassium blood level does not work for my ability to function. I need for my potassium (4.3 or higher) and magnesium levels to be high-normal in order for me to have what a typical person in my age range would experience as normal energy levels. Because of this, food alone does not suffice to fulfill my daily potassium or magnesium requirements, i.e., the need for KCL and MG supplements that I take every day.

Experiencing this lifelong diagnosis has been equally as difficult on my psyche as it has been physiologically. So much of my day-to-day life has required major modifications, such as giving up my private practice (former work as a psychotherapist), frequent doctor visits and tests, (sometimes) daily blood tests, entertainment or socializing with friends and family, how to eat out/where to go, how to travel or being able to travel at all, where to stay, cooking, etc.

For me, acceptance was the hardest part, and it took a few years. I recognize that “it is what it is” now, and I know that I am not able to reverse it or change it. But I am in control of my outlook and how well or how poorly I take care of myself. It is not up to anyone but me, so I take it seriously, and I do what I can with new information/research to stay on top of things and keep myself active, aware, and knowledgeable as well as serving as an advocate for myself.

Thank you for reading my story.