Despite a ‘bucket load’ of drugs, his blood pressure was life-threateningly high

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Andrew J. Rosen was not surprised when he was diagnosed with high blood pressure at age 39. Both of his parents had been on drugs for years that effectively controlled the condition that affects nearly half of all American adults and often runs in families.

But Rosen, who lives in Carlsbad, California, wasn’t so lucky. Even at the maximum recommended doses of five drugs, his blood pressure remained stubbornly high.

Rosen said he had repeatedly asked his doctors if an undiagnosed condition could be to blame. Each time, he got the same answer: He had “essential hypertension” — high blood pressure with no underlying cause.

Sometimes doctors told him that the condition, also known as primary hypertension, can be difficult to manage. Poorly controlled high blood pressure increases the risk of heart disease, stroke, irreversible kidney damage and premature death.

More than a decade would pass before Rosen learned that he had asked the right question, but had been given the wrong answer. His persistent high blood pressure did have an underlying, treatable cause.

“He had a bucket full of medication,” which was the first clue, noted William F. Young Jr. op, a Mayo Clinic expert consulted with Rosen in 2019. sorrow.

For a variety of reasons, noted Young, a professor of medicine at Mayo, “doctors often don’t seem to think about what might be causing ‘resistant hypertension’ — high blood pressure that isn’t controlled by three or more drugs. It’s a mistake he’s trying to fix.

“To be honest,” Young added, “this is one of the easiest things to diagnose.”

Now 60, Rosen, senior vice president of development for a company that builds rehabilitation hospitals, suspects he developed high blood pressure in his late 20s, though there’s no way of knowing. He hated having his blood pressure measured, so the readings were limited to periodic medical visits.

Those measurements routinely exceeded 140/90 mmHg, the limit that then indicated hypertension. (It has since been lowered to 130/80.) Rosen said he crawled out of that diagnosis by assuring doctors he had “white coat syndrome,” also known as “white coat hypertension” readings. which are high in a medical setting, but otherwise normal. Because of his childhood, doctors usually agreed.

Rosen didn’t really know if that was true; he zealously avoided taking his blood pressure at home. “It was terrifying,” he said. “It was always high.” He hated feeling the cuff squeeze his arm and preferred to assume he didn’t have high blood pressure.

Not all doctors were convinced. His allergist in Atlanta, where Rosen lived at the time, was skeptical about the explanation of the white coats. “He said, ‘I don’t know. You’re too young for high blood pressure,'” Rosen recalls.

In 2001, after his internist diagnosed hypertension, Rosen started taking a beta-blocker, a drug that blocks adrenaline. When his blood pressure didn’t drop, his internist added two other classes of drugs: a calcium channel blocker and an ACE inhibitor. When that trio proved ineffective, the doctor increased the doses.

In his mid-40s, Rosen was diagnosed with high cholesterol and type 2 diabetes, a chronic condition in which the processing of sugar is disrupted. Cholesterol-lowering and diabetes drugs controlled those problems.

In 2011, after Rosen moved to the San Diego area, his new primary care physician changed his blood pressure medications. When that only resulted in a minimal decrease, the doctor added two more drugs.

But the increased values ​​remained. “It would be 148/90 if the nurse measured it multiple times on the machine,” Rosen said. At the end of a visit, Rosen’s doctor would do a quick manual read and announce it had dropped to 118/69.

Rosen, whose sister is a doctor, was relieved. “I assumed he was a very good doctor,” he said. “And I liked his answer.”

But over the next few years, he became more and more uncomfortable. Although he took his medication faithfully, too many readings were too high for him to believe his blood pressure was under control.

In 2017, after both his parents had bypass surgery for clogged coronary arteries, Rosen consulted a cardiologist.

The heart specialist ordered a stress echocardiogram, a test that measures how well the heart is functioning. It showed that Rosen’s heart appeared to be normal, but the cardiologist, startled by his blood pressure, which was sometimes as high as 179/85, increased the amount of the one drug Rosen was not taking at the maximum dose. He suggested that Rosen’s hypertension could be the result of a kidney problem, but a kidney scan found nothing.

At this point, Rosen told his GP that he wanted to look for a “zebra,” the term doctors use for a rare diagnosis. The doctor ordered tests for a pheochromocytoma, a rare, usually benign tumor that arises in one or both adrenal glands, which sit on top of the kidneys.

After tests revealed no “pheo,” Rosen was referred to an endocrinologist, a doctor who specializes in treating hormone-related diseases.

‘You don’t have it’

Rosen saw the first endocrinologist in November 2018. She suspected he might have the condition most commonly associated with drug-resistant hypertension — primary aldosteronism (PA), also known as Conn’s or Conn’s syndrome after endocrinologist Jerome W. Conn’s. the University of Michigan, who discovered it in 1954.

PA is caused by an excess of aldosterone, a hormone produced by the adrenal glands. Too much aldosterone can cause the kidneys to retain sodium and lose potassium, which increases blood pressure.

The disease can be detected through blood tests that measure the levels of aldosterone and renin, an enzyme made in the kidneys that helps control blood pressure, and then calculate the ratio between the two. Further investigation is needed to confirm the diagnosis and to determine if one or both adrenal glands are affected. In the latter case, PA is treated with medication. But in 30 percent of cases, PA is caused by a benign tumor on one gland. Surgically removing that gland can normalize blood pressure.

While waiting for the results of his blood tests, Rosen read the comprehensive clinical guidelines for the diagnosis and treatment of PA issued in 2016 by the Endocrine Society, the international medical organization of endocrinologists.

He found that sleep apnea and low potassium levels, both of which he had, are linked to the disease. And he was encouraged when his blood tests seemed to indicate that.

“To me, this seemed like a really good thing, because it’s treatable,” Rosen said.

But the physician assistant who worked with his endocrinologist ruled out the possibility. ‘You don’t have it. your balance[sterone] too low,” Rosen recalls being told. Rosen said he protested that his understanding of the 50-page Endocrine Society guidelines, along with his calculation of the blood test ratio, suggested otherwise.

The colleague disagreed. Rosen said he ended the call and immediately started looking for a new specialist.

Shortly after, Rosen saw a second endocrinologist, who agreed that PA seemed likely. She ordered additional testing along with a CT scan, which provided confirmation. The final step was a technically tricky procedure known as adrenal venous sampling, in which a catheter is inserted into the adrenal arteries to determine if one or both are affected. That finding would guide treatment.

After consulting with Young, the second endocrinologist advised Rosen to undergo the vein sampling procedure at Mayo. In April 2019, Rosen and his sister flew to Minnesota and met Young, the clinic’s former president of endocrinology and past president of the Endocrine Society.

An interventional radiologist who specializes in the vein-taking procedure found that only one adrenal gland was involved, meaning Rosen was a candidate for surgery. (“You only need half of one adrenal gland to be completely normal,” Young said.)

In June 2019, Rosen underwent laparoscopic surgery at UCLA Medical Center. In the following year, he lost 35 pounds and his health improved dramatically. He now needs a low dose of just one blood pressure drug to reach a reading of 124/80.

“I feel much better now than before,” he said. “And I’m much more active.”

But the late diagnosis took an irreversible toll. Years of uncontrolled high blood pressure caused stage 3b kidney disease, for which Rosen is on medication and sees a kidney specialist regularly. As his illness worsens, Rosen has been told he may need a kidney transplant.

Young said he sees patients like Rosen far too often, a primary reason he became an evangelist for PA screening.

While doctors have long learned that the disease is rare, Young said recent studies show it isn’t. Researchers estimate that 5 to 10 percent of people with high blood pressure and 20 percent of those with resistant hypertension have PA. Most don’t know because they have never been tested.

A 2020 Stanford study found that only 2.1 percent of patients with resistant hypertension were screened for PA; at the University of Minnesota it was 4.2 percent. And a 2003 study from Australia found an unexpectedly high number of PA cases among a group of patients with high blood pressure.

“It’s hugely underdiagnosed and not just in the US,” said Young, who advocates screening everyone with hypertension at least once. “From my perspective, it comes down to the clinician’s awareness. Endocrinologists and nephrologists think about this. GPs, not so much.”

People with PA are more likely to develop heart and kidney disease and have a poor quality of life, Young noted in a 2018 article. Timely treatment may reduce those outcomes.

Rosen said he has also tried to train his doctors. “I’ve tried to tell every doctor where I’m going if you have a patient on three or more… [blood pressure] drugs and they are not well controlled, you have to test them” for PA, he said, following the guidelines of the Endocrine Society.

After his surgery, Rosen said he had “sent nice letters to all my old doctors saying, ‘You missed this.’ The only doctor he heard from was the primary endocrinologist, who called to apologize and said the man had misinterpreted Rosen’s tests.

Rosen said he hopes his experience will spare others. “Every day I wish I had done more research,” he said. “If I had done it 20 years ago, I wouldn’t have had kidney damage.”

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