042: Pushing the Uncommon Sense Envelope

In This Episode: Uncommon Sense facilitates some pretty out-of-the-box thinking that not only improves the thinker’s life, but sometimes improves or even saves countless other lives. Doug Lindsay’s story pushed the envelope pretty far — there really is no limit to Uncommon Sense, as you’re about to hear for yourself.


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Show Notes

  • Doug Lindsay can be reached through his web site.
  • His TEDx talk is embedded below.
Lindsay delivering his TEDx talk in St. Louis, April 2018. The full video is embedded below. (Photo: TED.com)

Transcript

Welcome to Uncommon Sense, I’m Randy Cassingham.

Doug Lindsay had a very concerning family medical history. When he was a toddler, his mother Barbara was suddenly struck by a perplexing medical disorder: she was so weak, she couldn’t lift her 18-month-old son. Within a couple of years she could barely get out of bed: she was dizzy, and chronically exhausted. Oddly, her sister Jeanne had the same problem. Yet their doctors couldn’t figure it out: it wasn’t quite like anything they had seen before. None of the treatments they tried helped. “The doctors had decades to help them,” Doug Lindsay said, “but after all that time, they still didn’t even know what was wrong.”

In high school, Lindsay was a track athlete: he didn’t have the problem. He decided to become a biologist: maybe he could figure out something that would help his mother and aunt. His health was fine. But then, his mother and aunt were healthy until suddenly they weren’t.

He got through his first three years at Rockhurst University in Kansas City, Missouri, but after the first day of his senior year he was suddenly stricken, just like his mother. Exhausted, his heart raced, and he was so dizzy, he said, that “Even lying on the floor didn’t feel like it was low enough.” If he stood for more than a couple of minutes, he’d need to rest for hours. After a long rest he could move again, but about 50 feet was his limit before he was exhausted again.

“When I called my mom that night to tell her I needed to drop out,” he said, he didn’t have to tell her why. “We both knew,” he said. He was 21 years old, and he moved back to the family’s home in St. Louis where he grew up.

Again doctors were perplexed, and the treatments they tried didn’t work. Lindsay only had one lead: one doctor who examined his mother thought that maybe her thyroid was the problem, and suggested she go to the Mayo Clinic to follow up on that. She never went: she was too ill to travel.

Doug Lindsay was a wreck too: for 11 years, he was bed-ridden. “If I was up, it was because I was eating or going to the bathroom,” he said. But there was one thing he could do even in bed: he read medical textbooks. He had realized that no one had more incentive to figure out his problem than he did.

One of those books was an old endocrinology textbook that someone had left by the trash at school. It was 2,200 pages, so it took awhile to get through it. But one brief note in the book gave him something to go on: adrenal disorders, it said, could mimic thyroid disorders.

The adrenal glands manufacture several hormones, most notably one that you’ve certainly heard of: adrenaline. Doctors call it epinepherine, the same drug I discussed in Episode 32 about the epi-pen. Another hormone produced there, as well as other areas of the body: norepinepherine, which sounds similar to epinepherine, but has different effects on the body.

Lindsay had his adrenal glands scanned. They looked normal, the radiologist said. A second scan, and then a third, brought the same results. But the more Lindsay read, the more convinced he was that the adrenal glands were the key to his condition.

Once he completed his research and could go no further, Lindsay did something audacious: he signed up for a medical conference. Not just any conference, but the conference of the American Autonomic Society, where doctors and researchers from around the world get together to talk about nervous system disorders.

To get there he had friends help him. He bought a whole row of seats on the airline to Hilton Head, South Carolina, so he could lie down. He brought his wheelchair so others could help him get around, saving his limited strength.

But Lindsay wasn’t there just to listen to presentations of the latest research: he had signed up to deliver a paper of his own. He presented himself as not merely a patient, but rather the researchers’ peer: he wanted them to listen. Aided by his three years of university education in biology, plus several more years of study on his own, he was a credible presenter.

“They didn’t patronize me,” Lindsay said. “They treated me like a scientist.”

His theory was, his adrenal glands were producing far too much epinepherine. His body’s engine revved so fast all the time, no wonder it was exhausted all the time. The way to test his theory, and maybe treat his condition, was to try a certain drug: Levophed, which is used in emergency medicine as a last-ditch effort to boost a patient’s blood pressure. Another name for it: norepinepherine. A constant intravenous drip, he thought, would damp down the effects of the epinepherine.

But the kicker was, Levophed is considered a short-term drug; Lindsay was proposing that since his adrenals were pumping out excess epinepherine all the time, he’d need the drip going all the time. That means it would be used in a so-called “off-label” way — or not approved by the FDA. While that is legal, many doctors don’t want to risk the liability of prescribing drugs off-label — especially when no one else is doing it with that drug.

The researchers were dubious, but after his presentation one doctor told Lindsay his theory was plausible. The medical professor from the University of Alabama in Birmingham, Dr. H. Cecil Coghlan, agreed to help. But Lindsay would have to come to Birmingham to get that help.

Once again, Lindsay’s friends were game: one rented an SUV, put a mattress in the back so Doug could lie down, and drove him the 500 miles to see Dr. Coghlan. The doctor agreed to try a Levophed drip, and it helped! It didn’t cure him, but it helped: he could get a lot more done before being exhausted. He was, he said, hooked up to the drip “every second of every day” — for six years. He used that time and energy to do more and more research on his condition.

Lindsay thought maybe had a tumor in one or both adrenal glands. But the three scans came back negative: they would have showed cancer if it was there. After more research, Lindsay came up with a new theory: maybe he had non-cancerous tumors in his adrenals. Here’s where my source material gets a little unclear: Lindsay went in for a fourth scan; maybe it was a different type of scan, and if so I’m guessing a Positron Emission Tomography, or “PET”, scan. In any case, the fourth scan did show abnormality, and finally allowed Dr. Coghlan to make a diagnosis: bilateral adrenal medullary hyperplasia.

Let me break that down for you. bilateral: both adrenal glands — we have two, one above each kidney. adrenal: the adrenal gland. medullary: situated in the medulla, which is the inner-most part of the organ. hyperplasia is broken into two parts: hyper means too much, and plasia is growth — abnormal growth.

It’s a non-cancerous tumor of the adrenal glands, specifically the medullae, or inner nodules, causing them to produce more adrenaline, or epinepherine, just as Lindsay theorized. While it was great to have a diagnosis, there was still a problem: there was no treatment for it, no surgery to help. Even the Levophed wasn’t making him normal. When Lindsay researched the diagnosis, he found only 32 cases ever reported in the medical literature. But the symptoms matched his experiences over the past several years.

“If there isn’t a surgery,” Lindsay concluded, “I’m going to make one.” He planned to design a surgery that would remove just the medullae, the inner nodes, of his adrenal glands. His research on how that might happen led him to a 1980 study by Georgia State University. They were doing some sort of experiment on rats, and the study report detailed how to remove the adrenal medullae, even one that’s small enough for a rat. “You slice the rat’s adrenal gland with a razor blade,” Lindsay said, “and squeeze it so the medulla pops out like a pimple.”

Nothing like it had ever been done on a human. But as Lindsay dug and dug through the records, he found a Harvard professor had done much the same with cats in 1926. Another study discussed something similar with dogs.

An alternative would be to remove the entire adrenal glands, but that would have meant he’d be dependent on drugs to replace their function for the rest of his life, chief among them being steroids, and he knew the long-term use of steroids causes its own nasty effects on the body.

By going through it all, reading every description of the surgeries he could find, Lindsay took the next step: he wrote a 363-page paper describing a surgery to perform an adrenal medullectomy — removal of the medullae from the adrenal glands — for humans. It covered everything that needed to be done, but then on to the next problem: finding a surgeon who would do it. That took another 18 months.

The surgeon he found would only do it on one of Lindsay’s two adrenal glands, but with even just one side done, Lindsay got progressively better. First, he could sit up more than a few minutes at a time — hours, even. He could walk to church — a mile away. It took another few years to find another doctor who agreed to remove his other adrenal gland’s medulla.

After that, Lindsay improved more, and did something he had not done since he started school, way back when he was fully healthy: he went on vacation. He did it up in style: he went to the Bahamas! It was a bittersweet victory, though: First, Dr. Coghlan died in 2015. Second, his mother’s condition was so bad, she couldn’t travel to get the surgery too. She died in 2016.

Despite a 16-year lapse to figure out not just what was wrong with him, and then come up with a surgery to fix it, Lindsay finished school and got his biology degree. He’s using that for his new career: medical consultant for difficult-to-diagnose problems. He’s now 41: it’s been 20 years since he was first stricken.

His health is far from perfect, but, he says, “I can travel and give speeches and go for walks. And I can try to change the world.” He has lectured at medical schools, given keynote speeches and a TEDx talk, and he’s writing up his case for the British Medical Journal.

Lindsay’s story is not just an illustration of Uncommon Sense in action, but a demonstration of amazing persistence: no one had more motivation to succeed in solving this mystery than Doug Lindsay. He stuck with it for over a decade, and succeeded in getting his life back. Certainly it’s quite a rare disease, but now doctors know what to do to help someone who suffers the same problem. “I got help from people,” Lindsay said, “and now I have to help people.”

The Show Notes for this episode, the TEDx talk, and a photo of Doug Lindsay, are at thisistrue.com/podcast42, where you can also post comments.

I’m Randy Cassingham … and I’ll talk at you later.

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3 Comments on “042: Pushing the Uncommon Sense Envelope

  1. After having thyroid issues, I can’t imagine the horror this man went through for adrenal issues. Persistence pays off though — although my own thyroid function tests came back normal time after time, cancer was finally found next to a growing goiter, the node was biopsied and then my thyroid with papillary cancer was fully removed. The thought of taking pills for the rest of my life is scary but not that bad in actuality.

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