Before Diagnosis
The first symptom I noticed was a rapid heartbeat. It typically occurred when I was in large meetings at work. This started a few years into the start of a stressful period in my life in my 40’s (perhaps it wouldn’t have been as stressful, had my health been better?).
I mentioned to my primary care physician (PCP) that I periodically noticed my heart racing. My blood pressure was high (maybe 140/80-90 at the time) at the doctor’s office, but home readings were fine so I didn’t think too much about it. The PCP sent me for a treadmill test; the doctor who ran the test asked me why I was there, as I passed with flying colors. I was given a prescription for a low dose of a beta blocker, metoprolol, which seemed to help at first with my feeling of anxiety. I also managed to balance things with good general health habits.
A few years later, at an annual health check in 2009, my bloodwork showed a potassium level of 3.4, just below normal; I was told to eat a banana every day to resolve it. Subsequent bloodwork typically showed a potassium level at the low end of normal or just above it. Fast forward three years to 2012, life was even more stressful. I was working very long hours with my career and had recently moved my elderly mother, who needed more and more daily help, to live near me. My employer held a free health and wellness screening that fall. I participated during an early morning time slot and the healthcare worker informed me that my blood pressure was extremely high (I believe it was in the 160’s, over 90 or so). They asked me to sign a piece of paper saying that I would contact my physician for further review of my blood pressure; that definitely got my attention. As I was also training to run a half marathon scheduled just a few weeks away, I called that morning to make an appointment with my PCP. They got me in pretty quickly and as part of the visit, they ran an EKG. After that test, my doctor walked in and said “you aren’t going back to work until you see a cardiologist, I’ve made the appointment for you today” and also “if you don’t see him and you run the half marathon, you might not make it to the finish line.”
Needless to say, I saw the cardiologist that day. He scheduled some tests and added a prescription for Benicar (and later Benicar HCT, which is Benicar with hydrochlorothiazide) to the metoprolol. The cardiologist had me check my blood pressure at home. At his office, it was always high and as he treated me, it seemed to become higher and higher at office visits – the highest in the range of 180/100, and he gave me clonidine before allowing me to head back to the office. My home blood pressures were sometimes very high but tended to more often be in the 130’s to 140 over 80 to 90. What I didn’t know at the time was that with primary aldosteronism, labile hypertension is frequently seen (depending on dietary sodium and potassium intake and the influence of stressful situations, blood pressure can easily spike).
My BP at my PCP visits was always high, but I was then under the care of a cardiologist so my PCP didn’t take any further action. Under the cardiologist’s care, none of the testing showed any serious issue (kidney ultrasound, bloodwork and 24-hour urine testing, echocardiogram, EKG and stress EKG). He began to tell me, and he continued to tell me while I was under his care, that I needed to reduce stress and take up yoga. At one point, he recommended that I see a psychologist. After likely several years of hypertension and about a year into the cardiologist’s care, in 2013, the cardiologist ordered aldosterone and renin testing. My renin was .08 ng/mL/h, barely registering, and my ARR was about 140 (multiples of the high end of the normal range). I asked the cardiologist about the results and if there was a problem and he said no, your blood pressure medication simply interfered with the testing. Looking back, I obviously should have pushed for retesting but I was super busy and trusted the doctor.
At one point, the Benicar with HCT was replaced with a sample of Tribenzor (a combination of Benicar HCT and amlodipine) and my blood pressure started to plummet (systolic in the 90’s). Based on the apparent effect of the amlodipine in lowering my blood pressure, a calcium channel blocker may have been a better choice to keep my blood pressure more controlled, but the doctor instructed me to stop the Tribenzor. I continued with the Benicar and metoprolol for several years, never feeling good on them, but asked for the HCT part of my medication to be dropped as I felt especially bad while on it (hydrochlorothiazide is known to deplete potassium in patients) and asked for a reduction in the metoprolol dosage as my resting heart rate was in the 40’s BPM range. I know now that Benicar (an ARB) requires renin to work; I had no renin. Beta blockers like metoprolol reduce renin level. It’s no wonder the Benicar, HCT, and metoprolol succinate made me feel worse, as I believe they actually served to increase my blood pressure. I tried every natural remedy I could find… drinking beet juice, eating a lot of celery and arugula, taking garlic supplements. Nothing really seemed to make a huge difference. I did notice that I felt better after exercise, so I continued my exercise regimen. But I had some very rough periods of time, waking up in the middle of the night with muscle cramps and spasms and a sense of doom, constantly having to go to the bathroom, lower legs and feet frequently swollen. I was often filled with an unexplained sense of anxiety.
I finally figured out that dietary sodium was a problem for me; I mentioned it to the cardiologist and he then wrote down “avoid sodium” on the notes from my visit. I’d get up at 5:30 am, work 9 to 10 hour or longer days, exercise, and head home for dinner only to collapse with exhaustion. Once, while running sprints during my workout, I suffered a nose bleed and twice, I had (otherwise unexplained) broken blood vessels in my eyes. My optometrist noted unfavorable changes in my optic nerve fibers had occurred, beginning around 2014 or 2015. Many signs and symptoms seemed to come and go; it seems clear now that all of these were connected.
Anxiety and/or depression seemed to be considered by medical providers as a core issue for me. At one point, my PCP recommended a sleep aid (which was actually an antidepressant); I declined, telling him I didn’t have sleep issues. One day at work, after lunch and probably too much dietary sodium, I felt so terrible (shaking, quivering muscles, and feeling that sense of doom) that I checked my blood pressure and found, of course, that it was very high. I then walked to a nearby doctor’s office. The physician decided I was simply stressed and prescribed an anti-depressant (which I never filled). I knew I didn’t need an anti-depressant, but I also knew that something was very wrong.
Diagnosis
Things took a turn in late 2017, after 5 years of care by my cardiologist. I received a call after a health check, my potassium was 2.9 (very low). I didn’t feel that badly, so it caught me by surprise; I was prescribed a potassium supplement. Two weeks later, in early 2018, at a routine visit with the cardiologist I told him about the low potassium and he sent me for bloodwork to test renin and aldosterone again. My renin was very low, as it was in 2013, at .05, and my ARR this time was 300. He took me off of the Benicar, placing me on amlodipine for several weeks before repeating the ARR test; my renin was still very suppressed, aldosterone was 25 ng/dL, ARR was nearly 200. When he saw me at the next visit, he exclaimed… “I know what you have! You have Conn’s syndrome!” He ordered a CT scan with contrast for the following day. I didn’t have time to even think about it (was it necessary to be exposed to the radiation from a CT scan, particularly having it done both with and without contrast? Would an MRI have been just as useful?). The cardiologist called me the evening of the CT testing and told me that nothing was found… there was no tumor; this seemed like really good news at the time. Later, I asked for a second reading of the CT and was told that both adrenals were normal.
Treatment
At my next visit with the cardiologist, I was told that I had a “mild case of Conn’s” and that it was easily treated with spironolactone. I will never forget taking that first tiny dose of spironolactone, 12.5 mg, and how it pretty much instantly lowered my blood pressure. I checked my blood pressure over and over, just to see the good/normal numbers I hadn’t seen in years. About six months later, I retired and took some time off after working for over 35 years. I continued to feel pretty good, the spironolactone was doing its work and many of the worst and most obvious symptoms of PA went away.
During that time, I started researching primary aldosteronism from online sources of medical information, but mainly from people in groups on Yahoo and Facebook, and I learned a lot. I learned that spironolactone and a no-findings CT scan was not the end of the road for me and I needed to be under the care of a specialist familiar with endocrine disorders to better manage my condition. I also learned, via my new-found online connections, that a low sodium diet wasn’t just important, it was critical… that dietary sodium allows the excess aldosterone to do its damage.
I asked for a referral to an endocrinologist in Oklahoma City. The endocrinologist continued to monitor my condition and we discussed next steps (I also later replaced my cardiologist). Based on my online research, I knew AVS was next but I also knew (and was counseled by my endocrinologist) that this test should not be done locally. I needed to find a center of excellence. My blood pressure continued to be fairly well controlled, but it still spiked during times of any stress. In 2019, I dealt with several stressful events that put next steps for PA on hold.
Later in the year, I developed severe insomnia. Then COVID-19 came in 2020, which didn’t help my sleep issues. The insomnia, plus other side effects of spironolactone, led to a medication change to eplerenone. Once on eplerenone, my insomnia seemed to lessen, but my blood pressure was not as well controlled. During COVID, I continued my research of the condition, deciding to seek help from Mayo Clinic in Rochester, Minnesota. In the spring of 2021, I sent my medical records to Mayo and requested a telehealth consultation; my appointment was scheduled for November, 2021.
Meanwhile, I was having problems balancing my electrolytes. Navigating a very low sodium diet (less than 800 mg/day) and an appropriate fluid intake proved tricky, with resulting hyponatremia (low sodium) leading to an ER visit. At the telehealth consultation in November, I was surprised to learn that the earlier CT scan in fact did show a nodule in my right adrenal (the original radiology report noted that my adrenals appeared normal; the same was reported a second time, after I requested a rereading of the scan by the local radiology staff). I was told by Mayo that further testing, particularly AVS, was appropriate if I wanted to determine if I was a surgical candidate.
The AVS procedure was successfully performed in mid-December of 2021, at Mayo in Rochester, Minnesota. I was truly shocked to get a phone call the next day from my Mayo endocrinologist informing me that my right adrenal was overproducing my left adrenal by a factor of 26 to 1. I was a surgical candidate. I later thought through possible options such as a partial adrenalectomy or an ablation, but was most comfortable with the full adrenalectomy recommended by my Mayo endocrinologist. The laparoscopic retroperitoneal adrenalectomy surgery was performed in mid-January, 2022; four hours after being wheeled from the operating room to recovery, I left the hospital – returning to Mayo Clinic the next morning for bloodwork and a visit with my surgeon and his team. The bloodwork showed an aldosterone level less than 4… indicating surgical cure was achieved. After leaving the hospital, I took acetaminophen for the pain (and this was only for a couple of days). I can’t say enough about the excellent care I received from Mayo every step of the way.
Since Treatment
I flew home three days after surgery, the area of the stitches a little tender and otherwise I felt pretty good. Once home, I had weekly bloodwork to check my sodium and potassium levels and kidney function. My potassium levels were not consistent from week-to-week, but they remained within the normal range. I increased my salt intake and reduced dietary potassium, particularly after a week with potassium tested at the high end of normal. My blood pressure is normal to optimal and I am sleeping well. I am transitioning to my new “normal” with one adrenal gland and dealing with other collateral damage (such as my eye issues) from PA. I hang on to the many positives from this decade-plus experience… the people I’ve met on the journey, support from caring friends and family, awareness of the healing power of foods, having faith to lean on, learning that I must do my own research and be my own medical advocate, finding gratitude even in challenges, and the power of advocating for change.
