Before Diagnosis
My hypertension was detected at a young age. I was 17 years old and my high blood pressure was discovered during episodes of exertional asthma. I was originally diagnosed with clinical pheochromocytoma, based on urinalysis showing elevated norepinephrine. At age 18, I had an MIGB scan, an imaging test that confirms the presence of a pheochromocytoma but nothing was found. I was placed on medication by my family doctor; he felt there may be a hormone-secreting tumor that could not be detected, but primary aldosteronism (PA) was not considered. In the 22 years since then, I’ve made countless trips to the ER for dangerously high blood pressure, at least 3 to 4 times a year. Along with the blood pressure spikes over the years, there were countless blood tests, urinalysis tests, and I would sleep for days after the episodes. I saw many doctors/specialists and naturopaths (I felt like I was seen as a “frequent flyer” of sorts) and was tested and sometimes treated for a multitude of conditions, including Lyme disease, pulmonary hypertension, and even depression. I even saw a dietician for help. Nothing changed with the various treatments. Fighting the stigma of mental health issues and being basically told “it’s all in your head,” was a continuing challenge. Over the years, in addition to the high blood pressure, I suffered from pretty consistent heart palpitations, a higher-than-normal core body temperature, and a tendency towards a fight or flight response to any stressors. I was on a low sodium diet of less than 2,000 mg per day. I was prescribed a wide variety of medications, starting with alpha/beta blockers and progressing to include many others, some having a short-term benefit but none helping me longer-term. It took 22 years of testing and failed treatments, and resulting damage to my body, to finally determine the issue was hyperaldosteronism.
Diagnosis
Two years ago, at age 38, another ER visit due to a hypertensive crisis started me on a path to diagnosis. I had been at work earlier that day, feeling particularly stressed. Once home, I checked my blood pressure and found it to be 221/180. The new doctor who saw me at the resulting ER visit decided to keep me overnight. I walked from the ER to the ICU, this visit finally leading me to what seemed to be important answers from this new doctor. An abdominal CT scan was performed that found a 2.8 cm adenoma on my left adrenal; I was grateful for that finding, but upset that it came after so many years of unfruitful tests and scans. This led to a referral to an endocrinologist. The endocrinologist ordered adrenal venous sampling (AVS), with a renal vascular sample to be obtained at the same time. After going off my medications for 8 weeks, the AVS testing was performed but the laboratory somehow, obviously mistakenly, threw out the samples. Then due to COVID, the planned second attempt at AVS was postponed. In September 2021, AVS was performed again, this time with results achieved and those results showing disease in both adrenal glands.
Treatment
I was initially prescribed 25 mg daily of spironolactone and my blood pressure instantly dropped; this was later changed (due to hormonal side effects from the spironolactone) to eplerenone at 25 mg twice daily.
Since Treatment
I am currently on multiple other medications as well, including perindopril/amlodipine, Adalat XL, chlorthalidone, and also potassium chloride at 1500 mg twice a day. My blood pressure continues to be controlled, and with fewer heart palpitations than before diagnosis and treatment. A recent ultrasound of my heart showed an improvement in left ventricle thickness since the medical treatment began. I have also been referred to a cardiologist for review of lipid issues with my high triglyceride level. I continue the low sodium diet I started ten years ago, taking in less than 1,200 mg a day since the ICU visit two years ago. I feel better but it’s still somewhat of a roller coaster, with muscle cramps and fatigue some days, especially as I try to manage and balance electrolyte levels with my athletic activities. I supplement the medications and management of my diet with Vitamin B12, magnesium citrate, and Omega 3’s.
I am currently waiting on an adrenalectomy. My endocrinologist wants to see if it resolves my most serious issues, how my body adapts, and make changes from there. She has consulted with Mayo Clinic and this is the recommended course of action for me. Recent COVID spikes locally have impacted scheduling, but I am anticipating surgery to be scheduled within the next month or two. As I’ve done throughout this journey, I take things day by day.
I encourage anyone with uncontrolled high blood pressure to request to have the simple blood test of renin and aldosterone to determine whether PA might be the cause.
