Medical mystery: unexplained nervousness and weight loss were telling clues
For nearly a decade, Sherrill Franklin fought an elusive foe. She lost 22 pounds without trying. Her face was flushed, her neck was sweaty and sweaty, and she felt inexplicably nervous. Sometimes Franklin, who lives in a rural community an hour west of Philadelphia, has suffered bouts of vertigo.
It wasn’t until a worrying new issue brought her to hospital that a specialist, one of nearly two dozen doctors she saw, ordered a blood test that revealed the reason. she felt so sick about.
Franklin regrets the lost years and sees his experience as an unfortunate combination of mistaken assumptions, missed opportunities, and red herrings.
âIt has cost a lot of money and it’s miserable,â she said. Franklin is disturbed that doctors repeatedly seem to overlook the probable cause of his illness. And she believes that some of her actions may have unintentionally contributed to the prolonged delay in diagnosis.
âI learned a lot by recounting what happened and why,â she observed. “I hope others will too.”
In the spring of 2008, Franklin, who owns a company that makes products for museum stores, sought treatment for Lyme disease. She had the classic rash and the nurse practitioner in her internist’s office prescribed the standard treatment: a course of oral antibiotics.
Franklin, then 56, was suspicious – and worried. It was not his first case of Lyme. Twenty-one years earlier, when she was pregnant, she had been battling a poorly treated tick bite for two years. She said it wasn’t until 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 made a full recovery.
In the weeks following her second Lyme diagnosis, Franklin said she was beset by a constellation of issues including nervousness, muscle weakness and sweating. Because these symptoms were different from the ones she experienced the first time around, Franklin wondered if she had contracted a different strain of Lyme. (There are more than a dozen.)
His internist suspected a possible metabolic problem and suggested that he see an endocrinologist. The Philadelphia specialist she saw “seemed irritated and overwhelmed by all of my symptoms,” Franklin recalls, but was not sure what was wrong.
For the next two years Franklin’s internist sent him to infectious disease physicians and endocrinologists; she found other experts on her own. Some have attributed its symptoms to menopause; others said her thyroid was malfunctioning and prescribed varying amounts of medication to treat fluctuating episodes of hypothyroidism or overactive thyroid, which can occur when the gland is inflamed.
But Franklin grew increasingly convinced that his problem was linked to ticks, a belief that escalated when doctors seemed unable to determine what was wrong or to prescribe effective treatment.
âI thought I had chronic Lyme disease,â said Franklin, who became a Lyme disease activist. âI didn’t know where to turn and I took this route for a long time.
The existence and treatment of “chronic Lyme disease” has been among the most controversial issues in medicine in recent years.
Federal health officials have warned of misdiagnosing the murky and ill-defined disease. And they strongly cautioned against the unproven and dangerous remedies used to treat it. Chief among them are 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 dizziness and pulsatile tinnitus, a wheezing or rhythmic thump that may signal a serious disorder. He ordered tests, which were normal, and ruled out an aneurysm or abnormal entanglement of blood vessels in the brain. The doctor told Franklin that his thyroid problem could be linked to tinnitus; an overactive thyroid can cause a rapid pulse and heart palpitations which could explain the sound ringing in his ears. Another specialist worked Franklin for pheochromocytoma, a rare adrenal tumor that can cause sweating. The tests did not reveal anything abnormal.
In 2011, Franklin had lost 22 pounds; at 5 feet 6 inches, she weighed 118 pounds. Her GP was worried and suggested that she start drinking Ensure. âI remember bursting into tears in her office and asking for help,â she recalls. “I was struggling and he didn’t know what to do.”
Her internist agreed to help her seek a consultation at a large Midwestern medical center, but could not get an appointment.
For the next five years, she played ping-pong among Lyme practitioners, infectious disease specialists, internists, and endocrinologists. Franklin said she usually mentions Lyme disease at the start of a visit. Among non-Lyme physicians, the reaction ranged from suspicious to downright cold.
An infectious disease specialist in Cleveland told Franklin she believed her symptoms were related to menopause. An endocrinologist in the Philadelphia area declared her to be in perfect health. Doctors in Delaware and New York City suspected she might have mast cell activation syndrome, an allergic reaction that causes flushing, before ruling it out.
Treatments prescribed by a trio of Lyme disease physicians, which included a three-week course of IV antibiotics that cost Franklin $ 9,000, did nothing to improve his health.
The heart palpitations began in earnest in January 2017. Franklin mentioned them to an internist she was seeing for the first time, who swept them away like anxiety. Due to her age, the doctor ordered a bone density test which revealed osteoporosis.
On September 21, the palpitations were impossible to ignore. âI had lunch and they didn’t leave,â Franklin recalls.
Her husband took her to an emergency care center where staff performed an EKG, then called an ambulance. Franklin suffered from atrial fibrillation (AFib), an irregular and rapid heart rate. In the hospital, she started taking medicines to regulate her heart rate and prevent a stroke, which can occur as a result of atrial fibrillation.
A week later, she was back in the hospital with a recurrence. This time, an endocrinologist ordered a thyroid stimulating immunoglobulin (TSI) test, which Franklin said had not been done before.
The result was definitive, as was the diagnosis: Franklin’s TSI level was very high. Such an elevation is a hallmark of Graves’ disease, the most common cause of hyperthyroidism.
Graves’ disease occurs when the immune system attacks the thyroid, causing it to make too much thyroid hormone. This hormone controls the body’s use of energy and affects virtually every organ.
The disease, named after 19th-century Irish physician Robert Graves, is believed to affect 1 in 200 people, the vast majority of whom are 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 would play a role.
Symptoms of Graves include involuntary weight loss, nervousness, palpitations, rapid heartbeat, and heat intolerance. Some people develop an eye disease called Graves’ ophthalmology, which can cause bulging eyeballs, although Franklin is not one of them. There are three ways to treat Graves’ disease: consuming radioactive iodine, which decreases thyroid function; surgery to remove the gland; or drugs.
If left untreated, Graves’ disease 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 fairly straightforward diagnosis.” In Franklin’s case, “she had had exams for a lot of other things and she had seen all these … specialists,” which may have contributed to the unusual delay.
“I can’t say she walked for a full decade, but she had been walking around for a year or two” with undiagnosed Graves’ disease, he said, which caused AFib and possibly be osteoporosis.
Bruno and Franklin both say they think his interest in Lyme disease may have been a factor.
Bruno said Franklin asked him if Lyme could have triggered Graves’ disease; he told her that the two were not related.
âThese are two independent processes,â he said.
Franklin said she now thinks she has seen too many specialists, which has been confusing rather than clarifying. And she wishes she hadn’t told new doctors what others had said or consistently shared her medical records. âThey think, ‘OK, an expert already looked at her, she’s a whiner,'” she said.
She suspects that some doctors have dismissed her as “a Lyme jerk.”
In retrospect, she thinks it would have been better to ask the doctors, “What else could this be?” And to learn about the next steps she should take. Franklin remains puzzled that despite her jagged thyroid levels, none of the endocrinologists she consulted suggested she might have Graves.
In 2018, after drugs failed to stabilize his thyroid levels, Franklin underwent surgery to remove the gland, resulting in a dramatic improvement in his health. She did not have a recurrence of AFib and her bone density improved.
“I don’t know if I’ll ever feel like I used to,” she said. “It’s been a long way back.”