Medical Mysteries: What was triggering her outbursts and confusion?

After a long day teaching high school English, Lindsay Trainor was feeling tired, out of sorts, and in no mood to wait. When she arrived at her boyfriend’s house around 7:30 p.m. expecting that the Thai food they’d agreed upon would be there, Trainor said she “went ballistic” after learning he’d waited for her arrival to order.

“I remember saying, ‘It’s fine, I guess I’ll never eat anything ever again!’ and I ran up the stairs to the bedroom and slammed the door,” Trainor said. Her boyfriend, now husband, quickly headed out to pick up dinner.

After they’d eaten, Trainor was abashed and apologetic. “I’m not sure what happened,” she remembers telling him.

Seven years later that 2016 incident, which the Northern Virginia couple had regarded as a funny story, assumed new meaning as Trainor’s erratic outbursts occurred more frequently, becoming increasingly bizarre and sometimes frightening. At one point Trainor feared she was experiencing a psychotic break; her husband, Bryan, wondered whether she was a secret drinker.

In May 2023, her unpredictable behavior was traced to an unusual cause for which she underwent treatment that put an end to the episodes, presumably for good.

“It took a while,” said Trainor, now 41, whose treatment involved months of close monitoring, “but I feel great now.”

The first episode occurred in the summer of 2015, shortly after Trainor moved from New England to the D.C. area. She and her cousin were standing in the checkout line at Ikea in Northern Virginia when Trainor suddenly became snappish.

Her cousin asked what was wrong. Trainor replied that she wanted some Swedish fish candy. “I wouldn’t let it go, and I wouldn’t stop,” she said. “I felt like I had no control of the emotions I was experiencing.” After paying the cashier, the duo made a beeline for the popular candy. Trainor scarfed several handfuls, and again felt and acted like herself.

“I have a lot of patience, and I’m not a reactive personality,” said Trainor, who remembers feeling puzzled by her intractable impatience.

By December 2022, something seemed to change. One morning during the school holidays, Trainor wandered into the kitchen around 7:30 — later than her customary 6 a.m. wake-up time. She opened the pantry, retrieved a box of cereal, scooped some out, and then tipped the box into her mouth. Her children, then 3 and 5, gaped.

“We’re a silly family, but I’m also a neat freak and don’t want to get cereal everywhere,” said Trainor. “It felt like I was conscious of what I was doing but unable to stop it.”

Her husband shot her a sidelong glance but said nothing. Trainor then headed to the adjacent family room to watch an English soccer match on TV.

“I don’t know what that means,” she remarked, pointing to a sign on the wall that read “Tottenham,” the name of her favorite team.

“What are you talking about?” Bryan Trainor asked. His wife shrugged, unable to explain. Twenty minutes later Trainor said she was “completely back to normal” and remembers thinking, “That was a very strange thing I just did.”

Two weeks later an upsetting episode marked a turning point. Trainor, who remembers feeling slightly nauseated and “off,” was making breakfast when her 5-year-old son announced he had changed his mind and wanted chocolate chips, not strawberries, in his pancakes.

“I flew off the handle and said, ‘I don’t know why you didn’t tell me, why am I standing here making these pancakes?’” Trainor remembers saying to the little boy. She slammed the spatula down on the counter and stalked into the laundry room, slamming the door so hard it came off its track before stomping upstairs.

Her husband finished the pancakes and brought her some. Trainor ate them, calmed down, and apologized to her son.

“That was particularly unnerving,” she said. “I don’t shout at the kids. I couldn’t figure out why I was so mad.”

It was clear to Trainor that something was wrong and that she needed to see a doctor. She didn’t have a primary-care physician so she made an appointment with a friend’s family doctor whom she saw at the end of January 2023.

Trainor recounted the cereal and pancake episodes and told the doctor she often felt ill and somewhat nauseated first thing in the morning. After the results of blood tests were normal, the doctor told Trainor he could find no explanation. He urged her to stay hydrated and return if there was a recurrence.

In early March 2023, Trainor said she awoke feeling “disoriented and very upset” but didn’t know why. Her 3-year-old daughter was dawdling and by the time the pair got in the car for the morning drop-off, Trainor had not calmed down and her daughter was in tears.

Trainor said she nearly missed the turn into the day-care center, a route she had driven since the little girl was 4 months old, because it looked unfamiliar. As she pulled up to the building, she remembers thinking, ‘Huh, they’re renovated [overnight]. That’s so weird.’”

But 10 minutes later when she arrived at work, Trainor said, she realized that nothing about the entrance or building had changed.

“I thought I was having a psychotic break,” she said.

She immediately called the doctor and saw him later that day. “He was very sympathetic and said, ‘You’re a mom of two young kids and a teacher and you’re doing so much,’” she remembers. He prescribed an antidepressant and an anti-anxiety drug.

“I just knew that wasn’t it,” Trainor said. But she said she felt uncharacteristically unable to express her doubts.

Trainor’s skepticism was rooted in experience.

“As a teacher for 13 years, I had been in a lot of stressful situations, and this didn’t feel like any of that,” she said. “But I’m a little follower and [the doctor] told me to do it so I did it,” she said of the medications. But instead of feeling better, Trainor said, the drugs made her feel worse.

She later learned that her sister, a pediatric nurse practitioner at Children’s National Hospital, worried that her outbursts and confusion signaled a brain tumor.

Bryan Trainor, who had wondered whether his wife was sneaking alcohol, noticed a pattern. The episodes most often occurred in the morning and seemed to clear up after she ate. Perhaps there was a problem with her blood sugar?

Trainor, who had been diagnosed with gestational diabetes during both pregnancies, was familiar with the basics of blood sugar. (Gestational diabetes is a temporary pregnancy-related condition that causes elevated blood sugar readings; it usually disappears after delivery.) She bought a home glucose monitor to measure her blood sugar first thing in the morning. Trainor’s readings were below 55; the normal level after fasting is between 70 and 100.

Trainor showed the readings to her family doctor who referred her to an endocrinologist for treatment of possible hypoglycemia or low blood sugar. The condition typically occurs in people with Type 1 or Type 2 diabetes. But Trainor was not diabetic. In people without diabetes, hypoglycemia has multiple causes, including infection, anorexia, certain medications, or excess alcohol consumption.

If it is mild or moderate, hypoglycemia can cause shakiness, confusion, irritability, or hunger and can be easily reversed by eating or drinking something containing sugar. Severe cases can result in unconsciousness or coma and require immediate treatment.

Trainor saw the endocrinologist in April. He ordered additional tests and gave her a continuous glucose monitor, a small device affixed to the back of the arm that measures blood sugar levels around the clock.

In May, the endocrinologist reviewed a month’s worth of readings. Trainor’s fasting blood sugar was only 35. He prescribed a drug to manage very low blood sugar, which was ineffective, and told Trainor she needed to undergo a 72-hour fasting test that measures blood sugar and other hormone levels. The test, which is conducted in a hospital, is regarded as the gold standard in the diagnosis of a rare pancreatic neuroendocrine tumor called an insulinoma.

Neuroendocrine tumors, which can be benign or malignant, make hormones that help regulate various bodily functions. An insulinoma results in the production of excess insulin, causing blood sugar levels to drop too low, resulting in hypoglycemia.

The best place for the test, the endocrinologist told Trainor, is Johns Hopkins Hospital, 70 miles north of her home. He didn’t have a doctor to whom he could refer her and advised her to search the hospital website for an insulinoma expert and schedule the test.

“I was frantic,” recalled Trainor. The frequency of hypoglycemic episodes was increasing, and Trainor would need to see a new endocrinologist at Hopkins before any test could be scheduled. The first appointment was four months away, in September. She took it.

But at a follow-up visit at the end of May, the endocrinologist ordered a specialized PET-CT scan, which is also used to detect neuroendocrine tumors.

The scan revealed that a single tumor, probably benign, was causing Trainor’s hypoglycemia. The insulinoma explained the odd episodes that dated back seven years, the reason her outbursts and confusion resolved when she ate something, as well as her very low blood sugar readings.

Surgery to remove the tumor is the preferred treatment. The endocrinologist referred Trainor to a pancreatic surgeon in Washington.

Endocrinologist Adrian Vella, an insulinoma expert and professor of medicine at the Mayo Clinic, said insulinomas can be difficult to diagnose in part because they are rare.

“The biggest problem is that there are 4 [cases] in 1 million,” he said, referring to the incidence. Misconceptions about hypoglycemia, which can be confused with hunger, further complicate their identification.

“I think there are so many [patients] crying wolf that when the wolf shows up” doctors miss it, he said.

Home glucose tests tend to be unreliable, Vella noted. The most accurate measurement of blood sugar occurs during, not after, a hypoglycemic episode. “True hypoglycemia is all about the numbers,” he said. It is most likely to occur overnight or if a meal is skipped.

A study of patients treated at Mayo found that the average delay from the onset of symptoms to diagnosis was about 2.5 years.

About 10% of insulinomas are cancerous; they are more common in people with certain inherited tumor-producing disorders such as multiple endocrine neoplasia Type 2 or MEN 2. There is no such history in Trainor’s family.

Surgery is typically curative. “It’s usually one and done,” said Vella, adding that these tumors rarely recur.

Trainor underwent surgery in September. She spent one night in the hospital and was back at work a month later. Her blood sugar levels, which were monitored closely for several months, were normal a few days after the operation and have remained so. The odd episodes have not recurred.

Trainor said her experience reinforced the importance of “trusting that you know yourself.” She said she wishes she had been more assertive early on when she doubted the initial diagnosis of anxiety, but felt “very muted and scared” for reasons she can’t explain.

“Had Bryan and I not started testing [my blood sugar] at home, I don’t know how long it would have taken” to figure out the real cause, she said.