Despite a “bucket” of medication, his blood pressure was dangerously high

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Andrew J. Rosen was not surprised when he was diagnosed with high blood pressure at 39. Both his parents had taken the drug for years, which 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 with the maximum recommended doses of five drugs, his blood pressure remained stubbornly high.

Rosen said he repeatedly asked his doctors if an undiagnosed condition was the cause. Each time, he would receive the same response: He had “essential hypertension” — high blood pressure without an underlying cause.

Doctors told him that sometimes, the condition, also known as essential hypertension, can be difficult to control. Poorly controlled high blood pressure increases the risks of heart disease, stroke, irreversible kidney damage, and premature death.

It would be more than a decade before Rosen knew he was asking the right question but got the wrong answer. Persistent high blood pressure had an underlying, treatable cause.

“He was on a bucket full of medication,” William F. Young, Jr., the Mayo Clinic expert cited by Rosen in 2019 noted, was the first evidence of that. Young said Rosen’s case is “very typical” of patients whose late diagnosis leads to preventable causes. damage and spoilage.

Young, MD, a Mayo professor of medicine, notes that for a variety of reasons, “doctors often don’t seem to think about what might cause” resistant hypertension — high blood pressure that’s not controlled by three or more drugs. It’s an oversight he’s trying to correct.

“Honestly, this is one of the simplest things to diagnose,” Young added.

Now, 60, Rosen, senior vice president of development at a company that builds rehab hospitals, suspects he developed high blood pressure in his late 20s, though there’s no way to know. He hated taking blood pressure, so the readings were limited to regular medical visits.

Those measurements routinely exceeded 140/90 mmHg, the cutoff then indicating high blood pressure. (It has since been reduced to 130/80). Rosen said he worked his way out of that diagnosis by reassuring doctors that he had “white coat syndrome,” also known as “white coat hypertension” — high readings in a medical setting but otherwise normal. Doctors usually agreed because of his youth.

In fact, Rosen didn’t know if this was true or not. He was diligent in avoiding taking blood pressure at home. “It was worrying,” he said. “It was always loud.” He hated feeling pressure on his arm and preferred to assume he didn’t have high blood pressure.

Not all doctors are convinced. An allergist who works for him in Atlanta, where Rosen was living at the time, expressed skepticism about the interpretation of the white coat. He said: I don’t know. “You’re too young for high blood pressure,” Rosen remembers.

In 2001, after his internist diagnosed high blood pressure, Rosen started taking a beta-blocker, a drug that blocks adrenaline. When his blood pressure didn’t budge, his doctor added two more classes of drugs: calcium channel blockers and ACE inhibitors. When this trio proved ineffective, the doctor increased the doses.

In his mid-40s, Rosen was told he had high cholesterol levels and type 2 diabetes, a chronic condition in which sugar processing is disrupted. Cholesterol-lowering drugs and diabetes control these problems.

In 2011, after Rosen moved to the San Diego area, his new primary care physician changed blood pressure medications. When that only reduced it to the bare minimum, the doctor added two more drugs.

But the high readings persisted. “It would be 148/90 when the nurse measured it on the machine a few times,” Rosen said. At the end of the visit, Rosen’s doctor was doing a quick hand reading and announcing he had dropped to 118/69.

Rosen, her sister is a doctor, relieved. “I thought he was a really good doctor,” he said. “And I loved his answer.”

But over the next several years, his anxiety grew. Although he took his medication honestly, many of the readings were so high that he thought his blood pressure was under control.

In 2017, after his parents had surgery on their blocked coronary arteries, Rosen consulted a cardiologist.

The cardiologist ordered a pressure echocardiogram, a test that measures how well the heart is working. He showed Rosen’s heart appeared normal, but the cardiologist was alarmed by his blood pressure, which sometimes was as high as 179/85, and increased the amount of the only drug Rosen wasn’t taking to the maximum dose. He noted that Rosen’s high blood pressure may be the result of a kidney problem, but a kidney scan found nothing.

At this point, Rosen told his family doctor that he wanted to start searching for “zebra,” the term doctors use for the rare diagnosis. The doctor ordered tests to detect pheochromocytoma, a rare, benign tumor that originates in one or both of the adrenal glands, which lie above the kidneys.

After tests didn’t reveal “pheo,” Rosen was referred to an endocrinologist, a doctor who specializes in treating hormone-related diseases.

“You do not have”

Rosen met her first endocrinologist in November 2018. She suspected he might have the most common disorder associated with primary aldosteronism-resistant (PA)-refractory hypertension, also known as Conn or Conn syndrome after University of Michigan endocrinologist Jerome W. Cohn, who He discovered it in 1954.

PA is caused by an excess of aldosterone, a hormone secreted by the adrenal glands. Excess aldosterone can cause the kidneys to retain sodium and lose potassium, which raises blood pressure.

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

While awaiting the results of his blood work, Rosen is mulling over the massive 2016 clinical guidelines for diagnosing and treating rheumatoid arthritis issued by the Endocrine Society, the international medical organization for endocrinologists.

He discovered that sleep apnea and low potassium levels, both of which he suffers, are linked to the disease. He was relieved when blood tests seemed to indicate him.

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

But a junior doctor who worked with an endocrinologist ruled out this possibility. “You don’t have. Your Aldo[sterone] Rosen remembers being told. Rosen said he protested that his understanding of the Endocrine Society’s 50-page guidelines, along with his calculation of the blood test percentage, suggested otherwise.

The colleague disagreed. Rosen said he hung up and immediately began looking for a new specialist.

Soon afterwards, Rosen saw a second endocrinologist, who agreed that rheumatoid arthritis seemed likely. She requested additional tests besides the CT scan, which provided confirmation. The final step was a technically challenging procedure known as adrenal venous sampling, which involves inserting a catheter into the adrenal veins to determine if one or both of them are affected. This discovery would guide treatment.

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

An interventional radiologist who specializes in performing vein biopsies found that only one adrenal gland was involved, which meant that 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. Over the next year, he lost 35 pounds and his health improved dramatically. He now needs only a low dose of one blood pressure medication to achieve readings of 124/80.

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

But late diagnosis imposed irreversible losses. Years of uncontrolled high blood pressure caused stage 3B kidney disease, for which Rosin takes the drug and goes regularly to a nephrologist. If his illness worsened, Rosen was told he might need a kidney transplant.

Young said he sees patients like Rosen more often, which is the main reason he became an evangelist for PA screening.

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

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

“It’s largely undiagnosed and not just in the United States,” said Young, who advocates that everyone with high blood pressure be screened at least once. “In my view, it has to do with the awareness of the physician. Endocrinologists and nephrologists believe in this. Primary care physicians, not so much.”

In a 2018 article, Young noted that people with this disease are more likely to develop heart and kidney disease and have a poorer quality of life. Timely treatment can reduce these results.

Rosen said he, too, has sought to educate his doctors. I’ve tried to tell every doctor I go to if you’ve had a patient in three or more [blood pressure] meds and they’re not well controlled, you need to test them” for PA, he said, echoing the Endocrine Society’s guidelines.

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

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

Send your solved medical puzzle to sandra.boodman@washpost.com. No unresolved cases please. Read previous puzzles on wapo.st/medicalmysteries.

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