Her unexplained jitteriness and weight loss were telling clues

Illustration. The Washington Post)
·8 min read

For nearly a decade, Sherrill Franklin battled an elusive foe. She lost 22 pounds without trying. Her face was flushed, her neck felt sweaty and clammy, and she felt inexplicably jittery. At times Franklin, who lives in a rural community an hour west of Philadelphia, endured bouts of dizziness.

It wasn't until a worrisome new problem landed her in the hospital that a specialist, one of nearly two dozen doctors she consulted, ordered a blood test that revealed the reason she felt so sick.

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Franklin regrets the wasted years and regards her experience as an unfortunate combination of flawed assumptions, missed opportunities and red herrings.

"It's been very expensive and it's been miserable," she said. Franklin is perturbed that doctors repeatedly appeared to overlook the likely cause of her illness. And she believes that some of her actions may have unintentionally contributed to the protracted diagnostic delay.

"I've learned a lot by going through what happened and why," she observed. "I hope others do, too."

In spring 2008 Franklin, who owns a business that produces products for museum stores, sought treatment for Lyme disease. She had the classic bull's eye rash and the nurse practitioner in her internist's office prescribed the standard treatment: a course of oral antibiotics.

Franklin, then 56, was wary - and worried. This was not her first case of Lyme. Twenty-one years earlier, while pregnant, she had struggled for two years with a tick bite that had been inadequately treated. She said it was only after she contacted the Yale doctor who first identified Lyme disease that she learned she would need three weeks of intravenous antibiotics. She received treatment and fully recovered.

In the weeks after her second Lyme diagnosis, Franklin said she was beset by a constellation of problems that included nervousness, muscle weakness and sweating. Because these symptoms were unlike those she'd experienced the first time, Franklin wondered whether she had contracted a different strain of Lyme. (There are more than a dozen.)

Her internist suspected a possible metabolic problem and suggested she see an endocrinologist. The Philadelphia specialist she consulted "seemed irritated and floored by all my symptoms," Franklin recalled, but wasn't sure what was wrong.

For the next two years Franklin's internist sent her to infectious-disease doctors and endocrinologists; she found other experts on her own. Some attributed her symptoms to menopause; others said her thyroid was malfunctioning and prescribed varying amounts of medication to treat fluctuating episodes of underactive or overactive thyroid, which can occur when the gland is inflamed.

But Franklin became increasingly convinced that her problem was tick-related, a belief that intensified when doctors seemed unable to pinpoint what was wrong or to prescribe effective treatment.

"I thought I had chronic Lyme," said Franklin, who became a Lyme disease activist. "I didn't know where to turn and I went down that path for a long time."

The existence and treatment of "chronic Lyme disease" has been among the most contentious issues in medicine in recent years.

Federal health officials have warned against the misleading diagnosis of the murky and ill-defined illness. And they have strongly cautioned against the unproven and dangerous remedies used to treat it. Chief among these is months or years of intravenous antibiotics prescribed by "Lyme literate" specialists, which in some cases have resulted in serious illness and even death.

In July 2010, Franklin saw an ear, nose and throat specialist for episodes of vertigo and pulsatile tinnitus, a rhythmic whooshing or thumping sound that can signal a serious disorder. He ordered scans, which were normal, and ruled out an aneurysm or an abnormal tangle of blood vessels in the brain. The doctor told Franklin that her thyroid problem might be related to tinnitus; an overactive thyroid can cause a racing pulse and heart palpitations that could explain the sound that echoed in her ears. Another specialist worked Franklin up for a pheochromocytoma, a rare adrenal tumor that can cause sweating. Testing showed nothing abnormal.

By 2011, Franklin had lost 22 pounds; at 5-foot-6 she weighed 118 pounds. Her primary care doctor was concerned and suggested she start drinking Ensure. "I remember bursting into tears in his office and begging for help," she recalled. "I was flailing and he didn't know what to do."

Her internist agreed to help her seek a consultation at a major Midwestern medical center, but was unable to secure an appointment.

For the next five years she ping-ponged among Lyme practitioners, infectious-disease specialists, internists, and endocrinologists. Franklin said she typically mentioned Lyme disease at the beginning of a visit. Among the non-Lyme doctors, the reaction ranged from leery to downright chilly.

An infectious-disease specialist in Cleveland told Franklin she thought her symptoms were related to menopause. A Philadelphia-area endocrinologist pronounced her perfectly healthy. Doctors in Delaware and New York suspected she might have mast cell activation syndrome, an allergic reaction that causes flushing, before ruling that out.

The treatments prescribed by a trio of Lyme disease doctors, which included a three-week course of IV antibiotics that cost Franklin $9,000, did nothing to improve her health.

The heart palpitations began in earnest in January 2017. Franklin mentioned them to an internist she was seeing for the first time, who brushed them off as anxiety. Because of her age, the doctor ordered a bone density test that revealed osteoporosis.

By Sept. 21 the palpitations were impossible to ignore. "I had lunch and they didn't go away," Franklin recalled.

Her husband took her to an urgent care center where the staff performed an electrocardiogram, then called an ambulance. Franklin was experiencing atrial fibrillation (AFib), an irregular, rapid heart rate. At the hospital she was started on medications to regulate her heart rate and prevent a stroke, which can occur as a result of AFib.

A week later she was back in the hospital with a recurrence. This time an endocrinologist ordered a test for thyroid-stimulating immunoglobulin (TSI), which Franklin said had not been performed previously.

The result was definitive and so was the diagnosis: Franklin's TSI level was sky high. Such an elevation is a hallmark of Graves' disease, the most common cause of an overactive thyroid.

Graves' disease occurs when the immune system attacks the thyroid, causing it to produce too much thyroid hormone. This hormone controls the body's use of energy and affects virtually every organ.

The disease, named for 19th-century Irish physician Robert Graves, is believed to affect 1 in 200 people, the vast majority of them women. Its cause is unknown, but a combination of genes, reflected in a family history of thyroid disease, and an environmental trigger such as a virus or stress are thought to play a role.

Symptoms of Graves' include unintended weight loss, nervousness, palpitations, a racing pulse and heat intolerance. Some people develop an eye disease called Graves' ophthalmology, which can cause bulging eyeballs, although Franklin was not among them. There are three ways to treat Graves' disease: consumption of radioactive iodine, which decreases thyroid function; surgery to remove the gland; or medication.

If left untreated, Graves' can cause osteoporosis, AFib and sometimes heart failure.

"Most people with new-onset AFib have their thyroid levels checked," said Christopher Bruno, the endocrinologist who ordered the test and made the diagnosis.

"Usually," he added, "Graves' disease is a pretty straightforward diagnosis." In Franklin's case, "she'd had workups for a lot of other things and she'd been seeing all these . . . specialists," which may have contributed to the unusual delay.

"I can't say she walked around for a full decade, but she'd been walking around for a year or two" with undiagnosed Graves' disease, he said, which caused AFib and possibly osteoporosis.

Both Bruno and Franklin say they believe that her focus on Lyme disease may have been a factor.

Bruno said that Franklin had asked him whether Lyme could have triggered Graves' disease; he told her the two are unrelated.

"They are two independent processes," he said.

Franklin said she now believes she consulted too many specialists, which proved to be confusing rather than clarifying. And she wishes she had not told new doctors what others had said or routinely shared her medical records. "They think, 'OK, some expert's already looked at her, she's a whiner,' " she said.

She suspects that some physicians dismissed her as "a loony Lyme lady."

In retrospect she believes it would have been better to ask doctors, "What else could this be?" and to inquire about the next steps she should take. Franklin remains puzzled that despite her seesawing thyroid levels, none of the endocrinologists she consulted suggested she might have Graves.

In 2018, after medication failed to stabilize her thyroid levels, Franklin underwent surgery to remove the gland, which led to a dramatic improvement in her health. She has not experienced a recurrence of AFib and her bone density has improved.

"I don't know that I'll ever feel the way I used to," she said. "It's been a long road back."

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