Invisible Ailments

Invisible Ailments

Hormone disorders can be tricky to diagnose, but often the root cause is something else

With a mix of concerning symptoms, a 54-year-old Grayslake woman visited her endocrinologist. Heart palpitations, severe headaches, panic attacks — she wanted answers.

George Thott, MD, endocrinologist at Northwest Community Healthcare, part of NorthShore University HealthSystem, screened the woman for adrenal issues, with both blood and urine tests. She was taking five medications to manage her very high blood pressure, and Thott was trying to determine if her body was overproducing the adrenaline hormone epinephrine.

The endocrine system is responsible for sending the invisible messengers — aka hormones — that tell the body’s cells how to function: how tired we are, how sexual we feel, how cold or warm we feel, and more. Yet, many hormonal conditions can be particularly tricky to diagnose because of hormones’ invisibility and how they often just leave the person feeling off.

But some hormonal disorders, such as Addison’s disease, can be dangerous, landing people in the emergency department when they go into a crisis, or experience adrenal failure. In these situations, the person may have dangerously low blood pressure, causing them to have severe fatigue, abdominal pain, or to lose consciousness.

Hormonal disorders include issues with the pituitary or adrenal glands, thyroid, and ovaries, among others. Symptoms often mimic other medical issues.

Understanding your symptoms

Disha Narang, MD, endocrinologist and director of obesity medicine at Northwestern Medicine Lake Forest Hospital, says she sees many patients who say they feel abnormal, but their symptoms tend to be vague.

“What does ‘off’ mean?” Narang will typically ask. Some patients say they feel tired, have palpitations and jitteriness, muscle aches, or weight changes. Narang will ask about their mood, gastrointestinal symptoms, and whether they’re feeling lightheaded. “Understanding symptoms can help guide testing and possible diagnosis,” she says.

In fact, Narang says 90% of the people who come to her thinking they have a hormonal disorder typically have something else.

“Hormones get more credit than they deserve,” Narang says. “While we do test for various hormone disorders, more often than not, symptoms are due to several other causes combined.”

Many people who visit endocrinologists (who are not being seen for diabetes) are self-referred after conducting research online or on social media, Thott says. In a preliminary exam, the endocrinologist deciphers which symptoms parallel a hormone disorder.

Getting to the root cause

Narang says many patients visit her office with a “laundry list of things to test.” Based on symptoms, she will test for various hormone levels, such as thyroid, cortisol, or prolactin. If they have unexplained weight gain, for example, it’s important to rule out hormonal causes. Severe obesity, she says, can cause hormone changes, like low testosterone, which can improve with weight loss.

“Weight gain leads to heart disease, increased joint replacement, liver disease — it affects every part of our body,” Narang says. Weight gain also contributes to chronic diseases like diabetes, which endocrinologists typically treat.

90% of the people who come to her thinking they have a hormonal disorder typically have something else.

Thott says about 70% of his 250 patients each month have type 1 or type 2 diabetes and need help managing the disease with medical therapy. But he also sees patients with chronic fatigue and hair loss. However, tests often come back negative for a hormonal cause. 

Instead, many of Thott’s patients have undiagnosed sleep apnea, a vitamin deficiency, or other medical illness unrelated to a hormone disorder. He also sees people with adrenal disorders, hypogonadism, hyperthyroidism, hypothyroidism, parathyroid disease and pituitary disorders. Many times, he says men will come in suspecting they have low testosterone, but their levels are normal; the person actually has undiagnosed depression, sleep apnea, or hemochromatosis — the over accumulation of iron.

Thott specializes in Cushing’s syndrome, which happens when the body overproduces cortisol hormones, also known as the stress hormone. Although the disease is rare, he says he has diagnosed about two patients a year for the past 10 years, through a series of tests.

Because internists, primary care, or family doctors can order preliminary tests for many hormonal disorders, Thott recommends seeing one of those physicians before seeking out an endocrinologist. 

Narang agrees. With only 8,000 endocrinologists nationally (compared to about 400,000 internal and family medicine physicians), they are typically booked out three to six months for appointments. A primary care doctor will have the expertise to order preliminary lab testing to rule out other issues before referring someone to an endocrinologist.

Narang also warns against seeking out supplements that claim to improve potential hormonal disorders.

“There is no FDA regulation of supplements, or any data that these supplements improve hormones,” Narang says, adding that some people may pick up supplements that report to boost testosterone, or improve bone or thyroid health, infertility, and energy only to develop dangerous consequences. “At best, some supplements may only transiently affect various hormone levels. There is no long-term data supporting the use of supplements touting treatment of hormone disorders,” she says.

When Thott first met his 54-year-old patient, he remembers she seemed anxious, wired, and restless — not uncommon for people with hormonal disorders. Her blood and urine tests “came back very positive,” he says. He diagnosed her with pheochromocytoma — a rare adrenal gland tumor, typically noncancerous. Imaging showed a 3-centimeter nodule on her adrenal gland, just above her left kidney. 

“A mass, technically benign, can cause blood pressure to skyrocket, episodic panic attacks, and sense-of-doom episodes. Once it’s removed, blood pressure goes down to normal, and the patient can come off all medications,” Thott says.

Mystery solved.

Originally published in the Spring/Summer 2023 print issue.