Could it be Long Covid? The shocking truth about his symptoms will leave you guessing!

The 61-year-old woman lifted the laundry basket, then looked grimly up the steps leading up from the basement. The climb seemed harder every day. Before she was halfway there, she could feel her heart race and hear her ragged, rapid breathing. She held on to the wooden railing in case she started to feel dizzy again. Once she reached the main floor of her house, she dropped her load and practically fell into the soft embrace of her living room couch.

The woman first noticed that she often felt out of breath a few months earlier. She wondered if it was her weight. She liked the way she looked, but she suspected that her usual care provider, a highly trusted nurse practitioner with a medical group at Yale Medical School, would be happy if she lost a few pounds. Her daughter was concerned that her difficulty breathing might be the result of the covid infection she had a couple of years earlier.

She finally called her PCP’s office when her right leg began to hurt. The combination of shortness of breath and pain in her leg caused her nurse practitioner to worry that the patient had a clot in her leg that had dislodged and lodged in her lungs. She sent him to have an ultrasound of her leg. There was no clot, which was a relief, but she was still out of breath.

Referral to the Long Covid Center

From then on, it seemed like I had a video visit almost every week. Each visit focused on the newest of her many and varied symptoms. One week she was so dizzy that she had trouble walking. The following week she shared his concerns about his recent weight loss: 10 pounds in just two weeks. On another occasion she saw the doctor who worked with her nurse. As he watched her through the distance of her connected computers, the doctor suggested that the dizziness could be caused by her not drinking enough water. Her shortness of breath and her rapid heart rate were probably due to lack of exercise. At her next video visit, her nurse practitioner said she might have POTS, short for postural orthostatic tachycardia syndrome. In this rare disorder, patients have a rapid heart rate or tachycardia whenever they stand up. It is sometimes seen in patients after they recover from a covid infection.

With each new concern, there was more evidence. They did ultrasounds and chest X-rays; an echocardiogram showed that his heart was pumping normally; and something called a Holter monitor, a wearable device that tracks heartbeats for 24 hours, only showed that his heart was beating rapidly at times. They did an MRI of his brain, a CT scan of his chest, and many, many blood tests. After all this, the patient was frustrated and scared that no one could explain why she suddenly felt so bad in so many ways. She was referred to a neurologist, a cardiologist and the Yale Long Covid Multidisciplinary Care Center.

She was first seen at the Long Covid Center, where I am the medical director. That April morning, she told me that she was out of breath all the time. She had to quit her job as a cashier. Her eyes sparkled as she described her rapid decline. Her heart and lungs had already been thoroughly evaluated, with the only abnormality being noted on the Holter monitor test. Like her nurse practitioner, she would ask me if she had developed POTS. Certainly POTS was something I saw regularly in long Covid patients. a recent study estimated that up to 14 percent of patients developed POTS after recovering from Covid-19.

This disorder can be diagnosed using something called an active support test. In this test, the patient’s heart rate and blood pressure are monitored while lying supine and then while standing for 10 minutes. A diagnosis of POTS is made if the blood pressure remains stable while the heart rate increases by at least 30 beats per minute.

When the patient was tested, she became dizzy and out of breath after only a few minutes, and the test had to be stopped early. Her heart rate had increased, from 101 to 140. POTS is not well understood, but is believed to signify autonomic nervous system injury. Normally, the act of standing up triggers a rapid surge of blood moving from the legs and lower body to the heart so it can be redistributed to the upper body and brain. In POTS, that doesn’t happen, and to get enough blood to the brain, the heart has to beat faster, usually much faster. In the case of this patient, as in many others she had seen, this increase in heart rate is inappropriate and the patient feels dizzy. POTS often appears after a viral infection. While there are medications that can help, the first line of treatment is to increase the amount of water stored in the body and wear compression garments to help return blood from the lower extremities to the heart.

I wasn’t sure if all of this patient’s symptoms could be attributed to POTS, but I thought treating POTS was the right first step. I encouraged her to drink more water and prescribed the necessary clothing. Two weeks later, when she informed me that her heart was still racing, I started her on medication to slow it down.

He returned to the office a couple of weeks after that. Her heart was better, she told me, but she was losing weight: “When I look in the mirror, I hardly recognize my face.” Her cheeks, normally plump and round, looked flat and gaunt. He had lost 25 pounds in three months. That stopped me. Weight loss was not a common symptom of POTS. Was I wrong in the diagnosis?

An essential step missed

Suddenly, her symptoms took on a completely different form. She had been making assumptions about her case based on the fact that the doctors who referred her to our center thought her symptoms were the result of a long period of covid. But in truth, none of us really knew if she had been suffering from Covid for a long time. There is no definitive test that links current symptoms to a covid infection experienced weeks, months, or even years earlier. The first published reports of surviving symptoms from viral infection came in April 2020, just a few months after the virus reached the United States. And since then, a wide range of symptoms have emerged. But the links between the symptoms and the hypothesized cause were temporary. There is only the experience of the patient to suggest a connection. But as with many of the disorders for which there are no definitive tests, this is a diagnosis that can only be made when other possibilities have been ruled out. Seeing this patient, I skipped that essential step.

This was a middle-aged woman who had a racing heart, who was out of breath with any exertion, who was losing weight rapidly—a classic presentation of thyroid hormone overload, a condition known as hyperthyroidism. This small gland located in the neck is part of a complex system that controls the body’s metabolism. When too much thyroid hormone is released, the body’s engine revs up as if someone stepped on the accelerator and didn’t let up. She had all the symptoms of hyperthyroidism and I just hadn’t seen it. I sent it to the lab down the hall from my office. Within hours, it was clear that her system was flooded with these hormones.

I called the patient right away to explain that despite the positive active support test, she probably did not have POTS and instead her thyroid had gone haywire. This is usually the result of an autoimmune disorder known as Graves’ disease, in which antibodies bind to receptors in the thyroid gland, mistaking these normal cells for attacking invaders and triggering a near-continuous release of their hormones. Even before Graves’ diagnosis was confirmed, the patient began taking a medication to block hormone production.

I have spent the last 20 years writing and thinking about diagnostic errors. And I understand how this happened. In medicine, most diagnoses are made through a recognition process. We see something, we recognize it, and we act on what we see. Most of the time we are right. Most of the time. I asked this patient for a photograph to keep on my desk. A reminder, I hope, that the first diagnosis that comes to mind can never be the only one considered.

As for the patient, she feels much better since she started these medications. Her heart rate is down and the basement stairs are getting easier. She tells me that she’s stopped losing weight, but that she won’t feel like she’s back to her before until her cheekbones are hidden again.

Lisa Sanders, MD, is a contributing writer for the magazine. Her latest book is “Diagnosis: Solving the Most Perplexing Medical Mysteries.” If you have a solved case to share, please write to Lisa.Sandersmdnyt@gmail.com.