An Elusive PCOS Diagnosis Could Explain Obesity Issues

As a teenager, Ali Chappell, PhD, CEO and founder of Lilli Health, hid food in her room. She said that while she had plenty of access to meals and snacks, she never felt satisfied. Chappell felt shame at the amount of food she consumed.

“I felt very out of control around certain types of food. The minute I woke up in the morning, it was, what was I going to eat and how much was I going to get to eat,” Chappell, now 38 years, said. “I remember waking up in the middle of the night to go run on the treadmill because I was gaining weight and gaining weight and gaining weight.” 

She had a number of hormonal symptoms during the same time: Chappell battled acne that required treatment with Accutane twice while she was in high school; she only came off the drug because as a 15-year-old, her cholesterol “got way out of control.” 

It would be years before a doctor at her college said her symptoms, including disordered eating, very well could be polycystic ovary syndrome (PCOS).

Before that, however, Chappell said she had wild mood swings during her teenage years, with her mom describing her as “an absolute mood disaster.” Also, Chappell didn’t get her period until she was 16 years — or at least, that’s what she thought. She struggled for years with extremely infrequent periods, often getting her menses only once every 12 months or so.

“My mom was concerned I wasn’t having a period and took me to the family doctor — we didn’t have a gynecologist in our small town. The doctor ordered an ultrasound, and I just remember them saying, oh, you have a lot of cysts on your ovaries, but that’s okay, it’s normal,” Chappell recalled. “I had another two or three ultrasounds (between) ages 16-21, and they kept saying I had cysts on my ovaries, but it’s okay.”

Chappell’s disordered eating continued to worsen as she completed her undergraduate studies in nutrition at Texas A&M University, College Station, Texas. Finally, the summer before she turned 22 years, she went to the university hospital to get a prescription for contraceptives. The doctor there ordered bloodwork, which revealed that Chappell’s thyroid was underactive, and her testosterone was high; she also ordered an ultrasound. At the conclusion of the tests, the doctor brought all of Chappell’s symptoms together under one name, one she’d never heard before.

“She said, ‘You’ve got a lot of cysts on your ovaries, you’re not having a period, you’re having acne. All of this lines up to be PCOS,’” Chappell said. “So that was it. She said, ‘You’re going to need to watch your weight, and I’m going to put you on these birth control pills so we can get you a cycle started.’ She gave me a pamphlet about polycystic ovary syndrome. I’d never heard of it. And that was the end of that.”

Chappell was sent on her way with a lot of questions. As a nutrition major, and as someone who’d had an unhealthy relationship with food all her life, her thoughts immediately turned to a potential relationship between PCOS and diet — what could watching her weight possibly have to do with her ovaries? That question would define her scholarly career and her life’s work.

PCOS is a hormonal disorder that affects women of reproductive age. It’s characterized by a combination of symptoms, including all of those Chappell experienced: irregular or absent menstrual periods, higher-than-normal levels of androgens, and often, but not always, the development of many small fluid-filled sacs on the ovaries — though cysts don’t have to be present. This hormonal imbalance can lead to additional symptoms such as excess hair growth, acne, weight gain, and thinning hair, and can also cause infertility.

While the exact cause isn’t fully understood, factors like genetics, insulin resistance, and low-grade inflammation are thought to play a role, and if left unmanaged, PCOS can increase the risk for long-term health issues like type 2 diabetes and heart disease.

World Health Organization statistics show that PCOS affects as many as 1 in 8 women worldwide, but that up to 70% of women affected by this disorder may never receive a diagnosis.

Additionally, Katherine Schafer, PhD, MEd, a licensed clinical psychologist and assistant professor at Vanderbilt University Medical Center in Nashville, Tennessee, said that the type of disordered eating Chappell experienced is common in women with PCOS.

“The best scientific research that we have shows that PCOS and disordered eating are closely linked,” she said. A recent meta-analysis showed that women who had PCOS were more likely than healthy controls to have disordered eating and meet criteria for eating disorders, including bulimia nervosa. “In fact, when we look at the women who had PCOS, up to 12% of them met criteria for bulimia nervosa in their lifetime, which was much higher than in the general population, where we see only 3% of women meeting criteria for bulimia nervosa in their lifetime.

“This link between disordered eating and PCOS might be driven through hormones and neurotransmitters and create a self-amplifying cycle between eating pathology and PCOS symptoms,” Schafer said. Women who have PCOS often have disturbances in their levels of hormones and neurotransmitters including serotonin, leptin, and cortisol, which may leave them susceptible to developing eating disorders, which in turn might intensify and exacerbate hormonal disturbances, she said.

Upon receiving the diagnosis of PCOS, Chappell vowed to get educated. She quickly found that all her research led her in one direction.

“I went to PubMed and I downloaded and printed out every single article that I could find that was about PCOS. Everything kept going back to one single point, and that was insulin,” she said. “By that point, the only thing I’d learned about insulin was that you gave it to diabetics to lower their blood sugar. Never once (in school) did I learn anything about insulin resistance or what that meant.”

Chappell earned both her master’s and doctorate degrees at Texas Tech University, Lubbock, Texas. She arrived at grad school on a mission — she wanted to research the connection between insulin and PCOS in a clinical setting. Before she even started her master’s degree, Chappell had already written a 100-page proposal outlining this research. Chappell said that as she completed that degree, her PhD advisor suggested she try to get the funding for her own research and pointed her in the direction of The Laura W. Bush Institute for Women’s Health. 

“She said ‘This is something they would love. You just have to find a fertility specialist who’s willing to work with you so that they put a little bit more credibility to what you’re doing,’” Chappell said. “I think I’d already put in the grant application before I’d even finished my master’s.”

Chappell’s advisors at Texas Tech were impressed with her thoroughness and tenacity.

“Ali was very knowledgeable about PCOS and enthusiastic about how her (low-insulin) nutritional approach had worked for her,” said Mallory Boylan, PhD, RD, LD, a member of the research faculty at Texas Tech’s Center of Excellence in Obesity and Cardiometabolic Research. “She had reviewed literature that related to the topic and found very little that directly related to her research topic. She worked tirelessly to find a clinician who would collaborate with her so she could get a grant for the research.”

In 2011, The Laura W. Bush Foundation made a grant to Chappell in the amount of $25,000 to perform her doctoral research. Chappell’s 8-week dissertation study “Effect of a Low Insulinemic Diet on Clinical, Biochemical, and Metabolic Outcomes in Women with PCOS, enlisted 24 women with polycystic ovary syndrome.”

Prior to the study, they discontinued insulin sensitizers, oral contraceptives, and cyclic progesterone. Ten of the participants underwent testing using a metabolic cart to analyze fasting and after-meal energy expenditure, respiratory exchange ratio, and macronutrient oxidation after consuming a high-saturated fat shake.

The participants were placed on a low insulinemic diet, instructed to eat as much as they cared for of the following foods: lean animal protein; non-starchy vegetables; fruits, including fatty fruits; and nuts, seeds, and oils. Participants older than 21 years were allowed one 6-ounce glass of red wine per night, and all subjects were allowed up to 1 ounce of prepared or fresh, full-fat cheese each day. The diet excluded all grains, beans, and pulses; all dairy products except cheese and butter; and all forms of sugar and sweeteners because of their insulinotropic properties, although sugar substitutes were allowed. The individuals in the study were not advised to count calories or carbohydrates, and they were encouraged to eat until they were satisfied, but not to overeat. They were instructed to continue their normal exercise routine for the duration of the study.

The study’s participants realized significant improvements. They saw marked reductions in weight, BMI, fat mass, and waist/hip circumference, alongside significantly lower fasting and 2-hour insulin, triglycerides, very low-density lipoprotein, and testosterone levels — with all the changes showing very high statistical significance (P < .0001 for most). The diet also dramatically shifted metabolism toward increased fat oxidation and led to significant improvements in binge eating behaviors and overall quality of life.

Chappell said one critical component of the low insulinemic lifestyle is that it is not about calories. She emphasized that individuals who adopt this way of eating can eat to satiety, and that just as in the clinical studies she has performed, it is about eating as many of the nontriggering foods as possible, while staying away from those that are insulinotropic. She said it is an approach that differs greatly from the traditional approach some clinicians take, telling patients with PCOS that they should lose weight.

Sometimes the treatment for PCOS can actually precipitate disordered eating, as clinicians underestimate underlying causes of the disease.

“Many patients with PCOS are advised that their condition is related to their weight and the treatment is weight loss which for some individuals may actually precipitate the onset of an eating disorder,” Elizabeth Wassenaar, MD, DFAPA, CEDS-S, regional medical director with Eating Recovery Center and Pathlight Mood & Anxiety in Denver. “This is problematic for many reasons; it reinforces diet culture and disordered eating and distracts from understanding weight neutral interventions.”

Chappell has been an investigator on nine published studies, five of which are specifically in the area of PCOS. She continues the research to this day — now, with the purpose of providing products and services to benefit other women with PCOS via her Galveston, Texas-based company, Lilli Health. Through Lilli, Chappell realized a very important moment in her personal and business lives recently: She made her first research grant in the company’s name.

“I have so many plans for research studies in many different areas. That’s where I want to go,” she said. “I just started the first Lilli Health Research grant and I gave a grant award to an investigator at the University of Texas Medical Branch at Galveston. I felt like I’d made the full circle, now I can actually give back to the research. We’re in a time when women’s health research is dwindling, and getting to be the funder, to be able to give back, is amazing.”

Kim Hopkins, PhD, WHNP-BC, a PCOS specialist who practices out of PCOS Paragon Health Services & Consulting in Waldorf, Maryland, said it’s long overdue that the clinical community has the opportunity to move beyond one-size-fits-all advice for PCOS.

“Understanding that PCOS exists along a spectrum, has multiple varying symptoms, and impacts overweight, normal weight and lean persons (is important),” she said. “The only way we’re truly going to improve symptoms and long-term outcomes is by addressing the root cause, and that means making insulin-lowering strategies the foundation of treatment. I’m proud to see Lilli Health working behind the scenes to finally bring insulin-lowering strategies to the forefront of PCOS care where it belongs.”