Young and fit, she discovered dangerously high cholesterol at the age of 20

Emerging specialty of cardiometabolic care tackles lipid disorders
September 13, 2022


Taylor Stokes, right, with brother Evan and dad Mark. Taylor wouldn’t take “no” for an answer when she found out she had high cholesterol at 20 years old, and to her – and her family’s – benefit. Photo courtesy of Taylor Stokes.
Taylor Stokes, right, with brother Evan and dad Mark. Taylor wouldn’t take “no” for an answer when she found out she had high cholesterol at 20 years old, and to her – and her family’s – benefit. Photo courtesy of Taylor Stokes.

At 5-foot-4 and weighing 110 pounds, Taylor Stokes didn’t come across as someone with a cholesterol problem. And yet there it was, a total cholesterol count of 276, of which 206 of it was low-density lipoprotein (LDL) – “bad” cholesterol.

Those total cholesterol and LDL numbers were about twice that of the typical maximum for healthy adults. And while the results in October 2019 came as a surprise, Stokes, just 20, considered herself lucky to have learned about them when she did. Her job in public health for the state of Wyoming in Cheyenne afforded twice-annual blood testing, and she had taken advantage of it. Otherwise, she might not have figured out her cholesterol issue for years – and her health could have suffered as a result.

High cholesterol in your 20s to 40s

A photo of David Saxon, who helped this female address her high cholesterol in her 20s.
Dr. David Saxon

High cholesterol had already done damage to her dad. Mark Stokes was 35 when his older brother had a nonfatal heart attack at age 39. Mark went in for a cardiac-testing regimen; his total cholesterol numbers ran as high as 500, and his circulatory system was riddled with calcified cholesterol deposits as a result. In his mid-40s now, and despite being on cholesterol-lowering statin, his numbers were still too high.

Stokes decided to take action – for her, for her father, and for her younger brother Evan, then 16. She, and they, would end up at the UCHealth Advanced Lipid Disorder Clinic at UCHealth University of Colorado Hospital on the Anschutz Medical Campus. But it wouldn’t happen right away, and it only did happen because she wouldn’t take “no” for an answer.

One in 250 affected by familial hypercholesterolemia

Stokes first took her cholesterol results to a local doctor. There she was told, “We’ll worry about that in 10 or 15 years. I don’t want to put you on a statin while you’re of childbearing age,” as Stokes recalled.

“I didn’t like that answer,” she said. “I probably wouldn’t make it to have a child without having a heart attack at the rate it was going.”

After some hunting around on the web, Stokes settled upon her high-cholesterol issue’s likely culprit – familial hypercholesterolemia. It’s caused by a genetic mutation that inhibits the body’s ability to clear out LDL cholesterol. It affects about one in 250 people in the United States, according to the U.S. Centers for Disease Control and Prevention, and, left untreated, presents a heart-attack risk of 30% by age 60 among women and of 50% by age 50 among men.

A second doctor was of little help, either, even as Stokes’s cholesterol numbers got worse. She did, though, exact a referral to the UCHealth Advanced Lipid Disorder Clinic. In July 2021, she drove two-and-a-half hours down to the UCHealth Heart and Vascular Center – Anschutz Medical Campus with her dad.

There, genetic testing confirmed the mutation that causes familial cholesterolemia, and she met with University of Colorado School of Medicine endocrinologist Dr. David Saxon and registered dietitian Shannon Christen. Stokes’s cholesterol numbers were about to drop sharply – as they had for many patients before her.

Lipids and more

Patients with familial hypercholesterolemia make up a minority of those seen in the clinic but are not an uncommon referral, Christen says. Patients referred mainly by primary-care physicians, endocrinologists, and cardiologists arrive with high triglycerides as well as high cholesterol, elevated lipoprotein(a), and problems with lipid lowering drugs.

A photo of Shannon Christen
Shannon Christen

Many patients also have diabetes, a comorbidity that calls for carefully balanced care to manage lipids. Some are on medications such as oral estrogen, steroids, and antipsychotics that can lead to higher cholesterol counts. And there are special cases such as transplant patients, whose antirejection drugs can complicate blood-lipid treatment.

Given the breadth and complexity of cases the UCHealth Advanced Lipid Disorders Clinic handles, it makes sense that it’s multidisciplinary – to the point that an emerging specialty – cardiometabolic care – is taking shape. (One of the foremost proponents of cardiometabolic-care concept, retired CU School of Medicine physician Dr. Robert Eckel, founded the clinic.)

Dr. James Falko
Dr. James Falko

It’s staffed with endocrinologists Saxon and Dr. James Falko, endocrinology physician assistant Chelsea Baker, cardiologist Dr. Steven Simon, pharmacist Jodi Martinez, nurse Shannon Clawson, and Christen (who is also a certified diabetes educator). Treatments range from altering diets to changing up and adjusting medications to prescribing and managing lipid apheresis, a treatment similar to kidney dialysis, but which filters out lipids rather than renal waste.

Diet changes are surprisingly powerful, Christen says – particularly when it comes to high triglycerides. They can fall by half in a matter of days by cutting out dietary fats, she adds. With other cholesterol problems, medications often play a key role, and the clinic’s track record can identify the right drugs and pave the way for insurance approvals of such treatments as injectable PCSK9 inhibitors and other new and niche drugs.

Getting high cholesterol under control at a young age

In the clinic with Saxon, Stokes learned that being on a statin and being of childbearing age weren’t mutually exclusive. If she decided at some point to have children, she would temporarily go off the medication, Saxon explained. Given that Stokes’s dad had responded to the statin Crestor, he put her on it also – as he later did with her younger brother Evan. Their cholesterol numbers dropped into the healthy range.

For Mark Stokes, the treatment would be trickier. His case was advanced enough that a doctor in Cheyenne told him he had perhaps a dozen years to live. Despite Mark’s coronary calcium score being in the 96th percentile for his age, Saxon disagreed – assuming they could get his cholesterol under control. When Mark’s cholesterol stayed too high despite being on maximum doses of Crestor and ezetimbe, Saxon prescribed another medication, Repatha, a PCSK9 inhibitor Mark injects once every two weeks. His LDL cholesterol is now “very low,” Saxon says.

Dr. Steven Simon
Dr. Steven Simon

Taylor Stokes jokes with her family, “You’re welcome for saving your life.” But she is serious about the importance of family members of those with high cholesterol getting tested for familial hypercholesteremia.

“Your child could be walking around with high cholesterol because your husband or you have it,” she said. “I didn’t have any suspicion that I had it – and I did.”

Stokes is also seriously thankful that Saxon and colleagues were there for her and her family.

“They’ve been just amazing, and they were so welcoming, and Dr. Saxon was able to answer off of our questions and concerns,” she said. “And I think it really helped my dad.”

About the author

Todd Neff has written hundreds of stories for University of Colorado Hospital and UCHealth. He covered science and the environment for the Daily Camera in Boulder, Colorado, and has taught narrative nonfiction at the University of Colorado, where he was a Ted Scripps Fellowship recipient in Environmental Journalism. He is author of “A Beard Cut Short,” a biography of a remarkable professor; “The Laser That’s Changing the World,” a history of lidar; and “From Jars to the Stars,” a history of Ball Aerospace.