Taking Control Of Your Diabetes® - The Podcast!

Have you ever heard of hypercortisolism? What is it? How common is it? How do you make the diagnosis and treat it? Well, today we have two guests who have lived through it and will share their experiences.

I'm Dr. Steve Edelman. My good friend and colleague, Dr. Jeremy Pettus, is not here today. This is the Taking Control of Your Diabetes podcast. We're both endocrinologists at UCSD, we work at TCOYD, and we cover various topics on different areas of diabetes and related conditions.

So, I'm going to jump into it right away and just talk a little bit about hypercortisolism, and then we'll introduce you to our two guests today. We know that steroids are stress hormones, and they're used to treat serious conditions like asthma and cancer. Things like cortisol—that's a type of steroid—are typically only used for a finite period. What happens with hypercortisolism is that cortisol levels stay high over an extended period and wreak havoc on the body: difficult-to-control diabetes, difficult-to-control high blood pressure, heart disease, liver disease, kidney disease, and many other symptoms like weakness and fatigue. Well, one of our guests will share some of those with us when we introduce him a little bit later.

So, where does cortisol come from? Where do these excess levels come from? Well, they typically come from the adrenal gland or from tumors located in various areas of the body that over-secrete cortisol. What happens is it takes a long time to get this condition diagnosed, and that's what we're going to share with you today: the frustration that occurs with difficult-to-control diabetes. That's probably one of the most common conditions that people with hypercortisolism have.

So, I know you were diagnosed with type 2 diabetes in 2008, and the story goes on from there. Why don't you tell us your story, and then we'll hear from your now-wife, who was your fiancée at the time. We can take people through the typical, frustrating saga of having this condition of hypercortisolism that's not diagnosed for years and years.

Yeah, well, thanks for letting us tell the story. I was diagnosed sometime around 2008, and it was a total surprise to me. I was former Navy and I tried to keep in good shape. I exercised, was within body standards for the military, and I just started losing more weight. One day, I went to work and I couldn't see anything. It was like I was half-blind; everything was all fuzzy. I had a friend there, a colleague, who was diabetic, and he said, "Hey, let me test your blood. Did you have anything to eat this morning?" I said, "Nope. I was fasting because I didn't have time to eat in the morning."

So anyway, I ran into work, he tested me, and my blood sugar was 180-something. It was like, "Oh my God." It was like being hit with a hammer, emotionally. It was something that I never expected I would ever have. I kind of panicked and I called the doctor and got an appointment at 4:00 p.m. that afternoon—got the last slot for the day. I went in there, they did an A1C in the office, and sure enough, it came back at 8-point-something, close to nine.

Yeah. Well, there have been people that are at 16%, so you weren't that bad. But it sounds to me like in the beginning, based on your story, you took things under control. You took control of your diabetes, you started watching your diet, and you got better. But then it seemed like over time, your diabetes got tougher and tougher to control. I think you were ultimately on four different medications. That must have been frustrating for you because you were doing everything right, yet the doctor kept adding on medications.

Let me just say to the listeners and viewers that that's a common scenario in type 2 diabetes, which I think explains why it's so tough to get the diagnosis. It's not unusual to get type 2 diabetes and not respond to medications, so you need more and more. But sometimes you get to a point where things just don't make any sense. So, what happened as things progressed with your body, with your symptoms? I know you spoke about being fatigued and having mood changes, things like that.

Yeah. So, I went through three or four of these iterations where I would get a new medication to get my blood sugar down. I kept my body weight about the same and I exercised, so that was sort of the constant in the whole thing, and I would always try to eat right. That always kind of stayed the same, too. But over time, maybe a two- to three-year period, my blood sugars would creep up and creep up a little bit every day—a drip here and a drip there. Then it got to the point where my A1C went up, so the doctor said, "Well, we'll have to add another medication." That happened three extra times after the initial diagnosis.

As time went by, I could tell I was getting more tired, and I didn't have energy. When all this started, I was managing vacation rentals, working full-time at the nuclear power plant, I was the scoutmaster for 13 years, I was coaching my kids' sports... all kinds of stuff. I was just busy, busy, busy. Then I got recalled to active duty in the Navy, and there was the stress of living away from the kids and home, the stress of working long, stressful hours with the military, and then throw a divorce in on top of that... I was overwhelmed. I remember coming home and laying on the couch, turning the news on, and I was so tired. I'd look at the kitchen thinking, "Oh, hey, you know, there's a nice roast beef sandwich in there," but I was just too tired to get up and go eat it. I would just lay on the couch and fall asleep there, then wake up in the morning.

I recognized that was going on. I went to the Navy doctor, and they really didn't have any answers. We tried testosterone shots first, then a sleep study, and that came up with sleep apnea. From there, everything was kind of back to the usual: tired, fatigued, and then I had another medication added. This continued until finally, I got in touch with my now-wife. She started doing some testing.

You mean your fiancée at the time?

Mhm. Yeah. He came to me for lifestyle medicine because he had another one of his providers suggest he try a whole-food, plant-based diet to get his blood sugars under control. And so we did. I literally cleaned out his cupboards for him and got him on a very strict whole-food, plant-based diet, and his sugars were not improving. Here's a man that's exercising, etc.

Now, isn't there a rule? You're not supposed to date your patients.

Yeah, right. Well, you know what? When the stars are aligned, the stars are aligned.

And I would say thank goodness you met her, because she helped get the diagnosis. Well, tell us a little bit about what you were thinking and why you got him to a specialist that actually did the ultimate test that made the diagnosis.

Yeah. So, you were asking a little bit about his symptoms. As you're aware, Cushing's has multiple symptoms, and no two patients present alike, so it is often difficult to diagnose. I'm looking at this thin, muscular man, but then I'm hearing his history. I'm looking at him, and his arms are thin, but he has no body fat. He's got this little hump—a fat pad behind his neck. His face is a little more round than somebody who's eating so well and moving.

And then he's telling me he hasn't slept since 2008. Like, he never got REM sleep. He was chronically fatigued. He'd get up in the morning, have a cup of coffee, and need a nap. And I'm like, "This isn't right." Sometimes he was taking three and four naps a day. So, a profound sleep disorder. The CPAP machine wasn't making any difference. As many people who deal with sleep apnea know, once you get treatment, you usually feel amazing. So clearly, that wasn't the root cause of the fatigue.

He had kidney stones, he had bone pain, he had irritability, severe anxiety. This man—leader of men, brilliant, you know, highly educated—he was just a stress bomb inside, although he never let anyone see it. I got to know him. So, he had multiple, multiple symptoms pointing in this direction in addition to these escalating blood sugars, and nothing was working.

I actually said, "Let's order some extra labs," and I worked him up for latent autoimmune diabetes of adulthood (LADA), because I thought, "Well, maybe this is Type 1.5 and we need some insulin." That was negative. So I came home, I looked at him, and I said, "I think you have hypercortisolism." And he says, "Well, I know I am. I haven't slept since 2008." And I was like, "What?" So, it's the old adage: if you listen to your patient long enough, they'll tell you what's wrong. He knew, but he didn't know he knew.

You know, some of the things that you're talking about are the classic signs and symptoms of hypercortisolism. I think the body habitus changes—the thin arms, what we call the "buffalo hump," and thin skin—that is typically how we describe someone with Cushing's, which is really an end-stage condition of hypercortisolism. But the hypercortisolism that we see quite frequently is higher than normal, but not through-the-roof levels. They're chronic and lead to all the symptoms that he was having. Here's a guy who's in the military, super active, and even despite four medications, his blood sugar is 200 to 300.

I should mention the CATALYST study just briefly. It was a study where they looked at people in diabetes clinics—people with type 2 diabetes who were on three or more diabetes medications a day who still had an elevated A1C, just what he was going through. When they did the test that we'll describe in a second, it turned out that a quarter of them—one-fourth—had some evidence of hypercortisolism. So it's more common than we thought, and it can evade diagnosis, especially by the people living with it, but also by healthcare professionals that really haven't been educated on it much. A lot of people are accused of being non-compliant with their medications or they're accused of being crazy and are sent to a psychiatrist. So, it is a frustrating condition for sure, and thank you ahead of time for sharing your experience with us.

So, we should talk about the main way we get this diagnosed. Tell us how you got him diagnosed.

So, I actually ordered the labs for him because I'm board-certified in lifestyle medicine, and this wasn't fitting the picture. I knew what it was. So I wrote up the labs and sent him in, and he was grossly positive. There's a special test that's kind of definitive. He met all the criteria for me to run that test, which was uncontrolled blood sugars and all the symptoms that I just previously discussed. We had a cortisol level drawn...

Let me... can I explain the test a little bit more in detail? Yeah, it's a classic test. It's called the 1-milligram overnight dexamethasone suppression test. Basically, without getting into the exact details, it's fairly easy. You take a milligram of dexamethasone—it's one pill—you take it around 11:00 at night, and then you go in the morning and they measure your cortisol level. When you take dexamethasone, it's another steroid, and it should suppress a healthy adrenal gland from secreting excess steroids, including cortisol. So normally, the cortisol level should be suppressed in the morning. You ordered the cortisol level, which was way above normal, which tells you that he had hypercortisolism.

The next stage, of course, would be to find out the source of where the cortisol is coming from. And how did that story go? You're allowed to talk now. I know you're married, but you're still allowed to talk.

Yeah, you can talk about that if you want. So, we didn't figure out where it's coming from, I guess, right?

Yeah, his imaging was negative.

Yeah. And then, so, it's still a mystery where it's coming from.

Not really. No. Well, we think we know, but we haven't confirmed, is a better way to say it.

And then, since being medicated—I guess that's what you're asking—I could tell that everything stayed the same and then it gradually got better. I'm not napping as much. I sleep better at night. In fact, I had REM sleep last night. And for the last couple of months, I mean, it was amazing because for years and years and years, I haven't had any REM sleep. I never dreamed. And all of a sudden, that's all coming back. Blood sugars are rock bottom now. They're down to anywhere from 90 to 110 in the morning.

Tell them your A1C.

My A1C was 6.1.

We allow bragging on the show. Yeah, that's good. Well, you know what, it's not unusual to not know where the source is. But when you find a tumor, then it's fairly straightforward. They take it out—the little tumors that over-secrete cortisol. When you don't find it anywhere, that's where these medications can really help.

I should just mention the second half of the CATALYST study. They took these people who were diagnosed as having hypercortisolism and they gave them a very specific medication. Everything that was causing issues in these patients actually got better, just like you. The diabetes got better, their overall mood got better, and almost every sign or symptom that came along with having hypercortisolism got better. So it's kind of a new era in treating this condition because we now have very good, specific therapies that are well-tolerated. You're lucky that you got the diagnosis. Who knows how long you had it. You may have had it for five years, even longer, because your symptoms were pretty severe by the time your wife finally made the diagnosis. So, how long have you been on this therapy?

Oh, maybe... yeah, going on like a year now, I think.

And the medications you're on... were you able to reduce your diabetes medications or your blood pressure medications, for example?

Yeah, both. I went from four medications for diabetes down to metformin twice a day.

That's awesome. And it sounds like you got your energy back and your strength back. I don't know, have the body habitus issues—the thin arms—has that gotten better as well?

Yeah, I have noticed. It's not fair, but he does look like a trained athlete with no effort. His muscle mass has increased.

Yeah. Well, you know what, I applaud you for hanging in there with him and getting him the proper therapy. I think it's important to talk about this a little bit as we get near the end: some reflections and lessons that you two went through that could possibly help other people listening to and watching today's podcast. A condition that is invisible or hard to pick up, slowly progressive, and hiding behind the diagnosis of type 2 diabetes. So, what are some of your thoughts on this, for both of you?

I am so glad that you brought that up because as a family medicine and lifestyle medicine provider, I have had to advocate for patients to get the workup that they need. It's getting better, but I've had patients for years with these symptoms, even finding a tumor as an incidental finding on imaging. They have the symptoms before they progress, and the insurance company denies a further workup because their labs were, quote-unquote, "normal," and yet I had a symptomatic person with an imaging finding.

So the take-home from that is: if you have these symptoms, talk to your provider. If your provider doesn't seem to understand it, there are resources. Reach out to endocrinology. Reach out to someone that understands hypercortisolism. Get online. There's more information out there. There are symptom checklists you can complete. Sometimes you have to be your own best advocate. In his case, he tried, but he was sent to psychiatry from his provider because of the anxiety piece, etc. And really, the root cause was this hypercortisolism. So don't despair. Sometimes you have to be your own best advocate. That's just how it goes down. But if you are struggling and you know that you are following all the rules—the exercise, the diet—and it's not adding up, and you've done a symptom checklist and you're like, "This is me," get someone to listen to you.

Absolutely. You know, I love that statement: "You have to be your own best advocate." When I founded TCOYD nearly 30 years ago, I had three themes, and one of them was you have to be your own best advocate: be smart, be persistent, and take control of your diabetes.

So, I think just to sort of summarize, your story is pretty classic. You developed type 2 diabetes—I'm not sure if it runs in your family or not—but you developed it. It could have been caused by excess cortisol at that time, but you just don't know; it's a pretty common genetic condition. Despite watching your diet, getting help from your fiancée at the time, and being on four different medications, your blood sugars were still 200 to 300 milligrams per deciliter. This also occurs when people have high blood pressure that's very difficult to control despite multiple medications. They kind of go along together in what we call the metabolic syndrome.

So, I think people need to think about what makes sense and what doesn't make sense. If you're a type 2 diabetic and you're having a hard time taking your medications, that might be the reason. But if you're doing everything right and your glucose is very tough to control, and your blood pressure is tough to control, then this is something that should set off a red light in your mind and make you say, "Hey, maybe I have something else that's making my condition worse." And that's why we're doing this podcast. We've done a couple of other videos for healthcare professionals as well.

I think what you said is that you have to be your own advocate. That's true with any condition. I think having good communication with your healthcare professional is always good. Don't go in there and start yelling and screaming, but go in there with some nice things to say. Say, "I've been reading about this condition and I think I might have it. Do you think there's a way we can test to see if I have it or not?"

So, any other closing comments?

No, I think you really hit it on the head. It begins with awareness. If I had seen your podcast years ago, it would have focused me right in on it, and I would have found it sooner, I think. But I just wasn't aware, and I think a lot of doctors aren't even aware.

Well, you're absolutely right. It's not a new condition; it's an unrecognized condition that is now getting a lot more education about it because we have more specific therapies. I want to thank you for serving in the military. And I want to wish you two a long and happy marriage. Thank you for sharing your story because it's going to help others that listen and watch.

Yeah, thank you.

Thank you.

All right, so for all of you viewers and listeners out there, make sure that you like us, you follow us, and send your questions and comments. We will answer all of them. Thank you for joining our TCOYD podcast today.