Giving birth is typically a happy time for mothers, but for elementary school teacher Erin Consuegra, it brought unexpected health complications.
In 2013, after giving birth to her second child at 28, Consuegra developed extreme fatigue, fluttery heartbeats, and high blood pressure. Her doctor initially chalked it up to stress and prescribed medication—but Consuegra wasn’t convinced.
Later testing revealed her body was producing too much aldosterone, a hormone that regulates blood pressure and fluid balance, which was behind her symptoms.
“It’s like, you think staying home all day with two kids is causing these real medical issues?” she says. “It was offensive to just write it all off to stress and anxiety.”
Taking Charge of Her Own Health
Determined to get to the real root of her medical problems, Consuegra began doing her own research both online and through family members that are in the medical field. During her research, she came across a syndrome called primary aldosteronism. With aldosteronism, one or both adrenal glands (small structures that sit atop the kidneys) overproduce a hormone called aldosterone, according to the Cleveland Clinic. Aldosterone sends sodium and water into the bloodstream, which can increase your blood volume and blood pressure. Besides, the high blood pressure, Consuegra had something else in common with aldosterone: it lowers potassium, a mineral that Consuegra was deficient in.
Although her primary care physician agreed to run a blood test for the condition, she remained insistent that her results were normal. Once again, Consuegra was not satisfied with the answer she was getting from her doctor, so she decided to request a referral to a specialist.
“She took it as me questioning her,” Consuegra shares of her request. Getting a referral, she adds, “took a lot of fighting, a lot of tears, a lot of advocacy on my part.”
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Her diagnosis
Ultimately, Consuegra was able to get an official diagnosis through doctors at Vanderbilt University Medical Center. They diagnosed her with primary aldosteronism and found a small noncancerous tumor, or adenoma, in one of her adrenal glands, which is the cause of the condition.
After her diagnosis, doctors removed her gland in July 2014 and her symptoms disappeared.
Others aren’t so lucky
Unfortunately, for millions of other patients, they aren’t as lucky as Consuegra was to get a diagnosis. Although aldosteronism was first described more than six decades ago, less than 1 percent of cases get diagnosed and treated. This is troubling because evidence shows that aldosteronism is a common cause of high blood pressure or hypertension.
According to a study by the Annals of Internal Medicine, aldosteronism can show up in people with mild, moderate and severe hypertension. It can also show up in people who have normal blood pressure.
“The prevalence of primary aldosteronism is high and largely unrecognized,” the study authors wrote, adding that it may account for high blood pressure that has no identifiable cause and is typically attributed to genetics, poor diet, lack of exercise, and obesity.
Unfortunately closing the diagnosis and treatment gap has been difficult because many physicians don’t look for primary aldosteronism, which is very common. Additionally, screening tests are often tricky for doctors to interpret and miss a lot of cases. Research on aldosteronism also lags behind other diseases and primary care groups have declined to develop new guidelines. There are currently only a few health systems that have knowledgeable specialists that can provide care.
According to the U.S. Centers for Disease Control and Prevention, nearly half of U.S. adults, or 116 million people, are classified as having high blood pressure, causing experts to warn of a public health crisis hidden in plain sight. A widespread change in hypertension treatment is needed. Experts are calling on clinicians to increase their vigilance and prescribe drugs that block aldosterone’s effects.
Much like with Consuegra, clinicians often miss symptoms and patients are left to turn to Google, go from doctor to doctor or go undiagnosed for years.
“Unfortunately, I think my story is super-typical,” Consuegra says. Her frustrations have led her to start a patient Facebook group. “I don’t think anyone has had an easy road to diagnosis.”
This causes patients to be prescribed blood pressure medications that do little or no good. Patients also miss out on treatments that typically include surgery, low-salt diets and targeted drugs.
A misdiagnosis can increase the risk for health-related complications because excess aldosterone is toxic to the heart, blood vessels, kidneys, and other organs. Those with primary aldosteronism have a greater risk of kidney disease, heart failure, coronaray artery disease, and stroke compared to patients with garden-variety hypertension.
“My personal frustration is seeing patients who’ve clearly had primary aldosteronism for more than a decade and now have irreversible kidney damage,” which may require dialysis, says endocrinologist William Young Jr. of the Mayo Clinic. Although, Young treats about 250 primary aldosteronism patients a year he says it’s minuscule “compared to what’s going on out there.”
“I think if physicians realize how common this truly is,” he adds, “they would start to look for it more often.”
As a method of increasing detection, experts suggest removing a requirement that patients take a hiatus from blood pressure medications prior to screening, liberalizing cutoffs for a positive ARR result, and bypassing ARR for urine excretion tests, which are more reliable but cost more. Others have suggested wider prescribing of drugs to treat primary aldosteronism, even as a first-line hypertension therapy, according to UNDARK.
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Getting a Screening and Treatment
The Endocrine Society, a medical organization dedicated to the advancement of hormone science and public health, recommends that patients who exhibit the following red flags get a screening:
- Low potassium
- An adrenal mass that shows up on a scan
- Drug-resistant hypertension — defined as blood pressure that is uncontrolled despite taking three different kinds of antihypertensive medications at their maximally tolerated doses
- A family history of early-onset hypertension
- Stroke before age 40
