Hypercortisolism – The Overlooked Condition Behind “Uncontrollable” Diabetes

Summary

Podcast Summary

Episode Overview

Title: Hypercortisolism – The Overlooked Condition Behind “Uncontrollable” Diabetes
Hosts: Dr. Steve Edelman (Dr. Jeremy Pettus absent)
Guests: Phil (patient living with hypercortisolism and diabetes) & Clarice (Phil’s wife, family/lifestyle medicine provider)
Date: October 7, 2025

This episode explores the “invisible” yet surprisingly common endocrine disorder hypercortisolism—more commonly known as Cushing’s syndrome—and uncovers its significant impact on blood sugar control and the lives of those who often struggle fruitlessly to manage “uncontrollable” type 2 diabetes. Through Phil’s personal story and Clarice’s medical insights, Dr. Edelman takes listeners through the frustrating diagnostic journey, reveals the telltale signs healthcare providers frequently miss, and advocates for persistent self-advocacy when the numbers just don’t add up.

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Key Discussion Points and Insights

What is Hypercortisolism?

• Definition and Context
  • Hypercortisolism refers to excessive cortisol levels, usually from adrenal gland dysfunction or tumors elsewhere in the body ([01:10]).
  • Chronic high cortisol wreaks havoc: causes difficult-to-control diabetes, high blood pressure, heart/kidney/liver issues, muscle weakness, fatigue ([01:25]).
  • Often undiagnosed for years; frequently misattributed to “uncontrolled” type 2 diabetes.

“Cortisol levels stay high over an extended period of time and wreak havoc with the body...Difficult to control diabetes, difficult to control high blood pressure, heart disease, liver disease, kidney disease, and many other symptoms like weakness, fatigue.”
– Dr. Edelman [01:14]

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Phil’s Journey: The Patient Perspective

Diagnosis and Early Struggles

• Surprised by type 2 diabetes diagnosis in 2008, despite being fit and active Navy veteran ([03:23]).
• Blood sugar was 180+ mg/dL when tested while fasting.
• Felt “hit with a hammer emotionally” by the diagnosis ([03:50]).
• Initial control with diet and meds, but diabetes quickly became harder to manage, requiring more and more medications ([05:50]).
• Persistent, inexplicable fatigue and mood changes:
  • “I was overwhelmed...just too tired to get up and go eat it”—Phil [06:35]
  • Despite sleep studies and treating sleep apnea, fatigue remained unresolved ([07:55]).

The Clues and Missed Red Flags

• Despite exercise and strict diet, blood sugars worsened; doctors kept escalating meds ([05:50], [08:30]).
• Symptoms broadened: bone pain, kidney stones, severe anxiety/irritability, profound sleeping disorders (multiple naps a day, no restorative sleep) ([09:23]).
• “No two patients present alike”—misleading clinical picture ([09:23]).
• Sleep apnea therapy provided no relief—a diagnostic hint often missed.

“He was just a stress bomb inside. Although he never let anyone see it.”
– Clarice [10:35]

The Turning Point: Clarice’s Advocacy

• Clarice, Phil’s fiancee and a family/lifestyle medicine provider, recognized constellation of symptoms:
  • Thin arms, moon face, “buffalo hump” (fat at the back of neck).
  • Chronic fatigue, kidney stones, mood changes, recalcitrant blood sugars ([09:23], [11:30]).
• Attempted to rule out other disorders, e.g., latent autoimmune diabetes; all negative ([10:50]).
• Ordered tests suspecting hypercortisolism ([13:25]).

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Diagnosis: The Medical Details

• Confirmatory Testing
  • The 1mg overnight dexamethasone suppression test is the standard; if cortisol remains high in the morning, it strongly suggests hypercortisolism ([14:02]).
  • Phil’s results “grossly positive”—abnormally high cortisol post-test ([13:59]).
• Finding the Source
  • Imaging (scans) did not show a tumor; sometimes the cause remains elusive, but therapy can be started if cortisol is high ([15:12], [16:07]).

“When you don’t find [a tumor] anywhere, that’s where these medications can really help.”
– Dr. Edelman [16:13]

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Recovery: Treatment and Results

• Therapy Makes a Difference
  • With targeted medication, Phil’s sleep improved—“I had REM sleep last night...for the last couple months...that’s all coming back.”
  • Blood sugars dropped to 90–110 mg/dL; A1C fell to 6.1% (from high 8–9%) ([16:04]).
  • Reduced to just metformin for diabetes; blood pressure meds also cut ([17:47]).
  • Muscle mass and body composition improved: “He does look like a trained athlete with no effort” ([18:11]).

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Notable Quotes & Memorable Moments

• When fatigue ruled Phil’s life:

  “I was so tired. I look at the kitchen thinking, oh, hey, you know, there’s a nice roast beef sandwich in there. I was just too tired to get up and go eat it.”
  – Phil [06:35]

• Persistence and advocacy:

  “If you are struggling and you know that you are following all the rules…the diet, and it’s not adding up…and you’re like, this is me—get someone to listen to you. Absolutely.”
  – Clarice [20:27]

• Diagnosis is too often missed:

  “A lot of people are accused of being non-compliant with their medications or they’re accused of being crazy, they’re sent to a psychiatrist. So it is a frustrating condition for sure.”
  – Dr. Edelman [12:30]

• Advice for patients:

  “You have to be your own best advocate, be smart and be persistent, and take control of your diabetes.”
  – Dr. Edelman [20:43]

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Timeline of Key Segments

| Timestamp | Segment | |-----------|------------------------------------------------| | 00:55 | Introduction to hypercortisolism: symptoms, why it is overlooked | | 03:23 | Phil’s story: initial diagnosis, surprising results as a fit Navy veteran | | 05:50 | Disease progression: increasing fatigue, repeated medication increases | | 08:24 | Clarice describes attempts at lifestyle intervention and red flags | | 09:23 | Clarice identifies classic signs and symptom cluster (“buffalo hump,” chronic fatigue, mood changes) | | 13:25 | How the diagnosis was made: labwork and screening logic | | 14:01 | Dr. Edelman describes the dexamethasone suppression test | | 15:14 | Phil and Clarice discuss challenges in finding (or not finding) the hormonal source | | 16:03 | Phil’s improved health: normalization of sleep, glucose, reduction in meds | | 18:11 | Physical transformation after treatment | | 19:01 | Advice for listeners: self-advocacy, provider awareness, and access hurdles | | 20:39 | Dr. Edelman’s summary: be your own best advocate | | 22:39 | Phil’s wisdom: the importance of awareness and education for patients and providers | | 23:02 | Closing comments: hypercortisolism is not a new condition, just often unrecognized |

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Lessons & Takeaways

• Be Persistent:
  Chronic uncontrollable diabetes (or hypertension) despite aggressive management may signal a hidden culprit—advocate for further evaluation.
• Broad, Variable Symptoms:
  No two people with hypercortisolism look the same; physicians must put the full picture together.
• Ask for the Right Tests:
  The 1mg overnight dexamethasone suppression test is a simple first step if suspicion is high.
• New Hope for Patients:
  Modern therapies can dramatically improve energy, blood sugar, blood pressure, and quality of life—even when the precise source of cortisol remains elusive.
• Self-Advocacy is Critical:
  Educate yourself, persist, and don’t settle if “it just doesn’t add up.”
• Providers Must Think Outside the Box:
  Chronic uncontrolled symptoms aren’t always “bad compliance.” Rare conditions like hypercortisolism are more common than previously assumed.

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Closing Thoughts

This episode shined a light on the struggles patients face when an underlying condition masquerades as “bad diabetes.” Phil and Clarice’s story is a testament to the need for curiosity, compassion, and collaborative care when things don’t make sense.
Dr. Edelman and the TCOYD team encourage listeners to “take control” and push for answers—a message that resonates for those living with diabetes and their advocates alike.

Transcript

[A]

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. But I'm Dr. Steve Edelman. My good friend and colleague, Dr. Jeremy Pettis is not here today. This is the Taking Control of your diabetes podcast. We're both endocrinologists at ucsd. We work at tcoid, and we do various topics. 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. Well, 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. But typically they're only used for a finite period of time. And what happens with hypercortisolism? Cortisol levels stay high over an extended period of time and wreaks havoc with the body. Difficult to control diabetes, difficult to control high blood pressure, heart disease, liver disease, kidney disease, and many other symptoms like weakness, fatigue. And Phil will share some of those with us when we introduce him a little bit later. So where does hyper. Where does cortisol come from? Where does this excess levels come from? Well, they typically come from the adrenal gland, or they come from tumors that are located in various areas of the body that over secrete cortisol. And 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. And that's probably one of the most common conditions that people have with hypercortisolism. So, Phil, I know you were diagnosed with type 2 diabetes in 2008, and the story goes on from there. So why don't you tell us your story, and then we'll hear from Clarice, who was your fiance at the time and now you're married. And we can take people through the typical frustrating saga of having this condition of hypercortisolism that's not diagnosed for years and years.

[B]

Yeah, well, thanks for letting us tell the story. I got diagnosed sometime around in 2008, and it was a total surprise to me. I was, you know, former Navy, and I tried to keep in good shape. I exercised within body standards, you know, for the military. And you, you know, I just started losing more weight, and one day I went to Work and I, I couldn't see anything. It was like I was half blind, you know, everything was all fuzzy and. And I did have a friend there, a colleague that says, hey, let me, he was a diabetic. And he said, let me test your blood. You know, do you have anything to eat this morning? I said, nope. I just happened. I was fasting because I didn't have time to eat in the morning. So anyways, I ran into work, he tested me and my blood sugar was 180something. And it was like, oh my God. So it was like being hit with a hammer emotionally and something that I never expected I would ever have anything like that. And so I, you know, I kind of panicked and I called the doctor, got an appointment at you know, some 4pm that afternoon, got his last slot for the day and went in there and they did an A1C in the office and sure enough came back. I was eight point something close to nine.

[A]

Yeah, well, there have been people that are 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 and 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. And so that must have been frustrating for you, cause you were doing everything right. Yet the doctor kept adding on medications. But let me just say to the listeners and viewers that that's a common scenario actually 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. You need more, 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.

[B]

Yeah, so I went through three or four of these iterations where I would get a new medication to get my blood sugar down. And then I kept my body weight about the same when I exercise. So that was sort of the constant in the whole thing. But. And I would always try to eat right. And so that always kind of stayed the same too. But over time, you know, like maybe a two to three year period, you know, my blood sugars would creep up and creep up a little bit every day. A drip here, drip there. And then it got to the point where, you know, my A1C went up. So the doctor said, well, we'll have to add another medication. So, and that happened three times, three extra times after the initial diagnosis. And, and as time went by, I could, I could tell I was getting more tired and I didn't have energy and you know, and when all this started, you know, I was managing vacation rentals, I was working full time at the nuclear power plant. You know, I was the Scout Master for 13 years as coaching, you know, my kids, sports, all kinds of stuff. You know, I was just busy, busy, busy. And then, you know, when I got called active duty, recalled active duty Navy, and you know, there was the stress of living away from the kids and home and then, you know, the stress of working a lot with the military, long hours, stressful hours, and then throw a divorce in on top of that. And I was, I was overwhelmed. I remember coming home and laying on the couch, turn the news on, and I was so tired. I look at the kitchen thinking, oh, hey, you know, there's, there's a nice roast beef sandwich in there. I was just too tired to get up and go eat it. I'm just laying a couch and fall asleep there and then wake up in the morning. And so that was, and I, I recognized that was going on and you know, I went to the Navy doctor and, and they really didn't have any answers. You know, we tried testosterone shots first and then sleep study and then that came up with sleep apnea and, and then from there everything was kind of back to normal. It was tired, fatigued, and then, you know, add another medication and then until finally I got in touch with Dr. Combs and she started doing some testing.

[A]

Dr. Combs? You mean your fiance at the time, is that right?

[C]

Yeah, he came to me for lifestyle medicine because he thought 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, et cetera.

[A]

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

[C]

Yeah, right.

[A]

You know what? When the stars are aligned, the stars are aligned. And I would say thank goodness, Phil, that you met Shareese, because she helped get the diagnosis. Well, tell us a little bit about what you were thinking and, and why you got him to a specialist that actually did the ultimate test that made the diagnosis.

[C]

Yeah. So you were asking a little bit about his symptoms. He as you're aware Cushing's has multiple symptoms and no two patients present alike. And it is difficult to often diagnose. So I'm looking at this thin, muscular man, but then I'm hearing his history, and I'm looking at him, and his arms are thin, but he has no body fat. He's got this little hump 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. 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. Naps a day. So profound sleep disorder. The machine wasn't making any difference. And 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, and he was just. Just a stress bomb inside. Although he never let anyone see it. You know, I got to know. So he had multiple, multiple symptoms and things pointing in this direction in addition to these escalating blood sugars, and nothing was working. So I said, let's order some extra labs. And I actually worked them up for latent autoimmune diabetes of adulthood, because I thought, well, Maybe this is 1.5 and we need some insulin, and that was negative. And so I came home and I looked at him and I said, I think you're hypercortisol. 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.

[A]

So, you know, Charisse, some of the things that you're talking about are the classic, what we call signs and symptoms of hypercortisolism. And I think the body habitus changes the thin arms, what we call the buffalo hump, and thin skin. I mean, that is typically how we describe someone with Cushing's, which is really kind of an end stage condition of hypercortisolism. But the hypercortisolism that we see quite frequently is higher than normal, but not through the RUTH levels, but is chronic and leading to all the Symptoms that Phil was having. You know, here's a guy who's in the military, super active, and even despite four medications, his blood sugar is 2 to 300. And I should mention this Catalyst study, just briefly, that it was a study where they looked at people in diabetes clinics, people with type 2 diabetes who were on three or more medications a day, diabetes medications who still had an elevated A1C, just what Phil was going through. And 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 could evade diagnosis by especially people living with it, but also by healthcare professionals that really haven't been educated on it much. And it can be easily mixed. A lot of people are accused of being non compliant with their medications or they're accused of being crazy, they're sent to a psychiatrist. So it is a frustrating condition for sure. And certainly thank you ahead of time for sharing your experience with us. So we should talk about the main way we get this diagnosed. So tell us how you got Phil diagnosed.

[C]

So I actually ordered the labs for him because I'm board certified in lifestyle medicine and this wasn't fitting the picture and I knew what it was, so I wrote up the labs and sent him in. And he had, he was grossly positive. So 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. And so he took, we had a cortisol level drawn.

[A]

Let me, let me. Can I explain the test a little bit more?

[C]

Yes, go for it.

[A]

Yeah, it's, it's a classic test. It's called the 1mg overnight dexamethasone suppression test. So basically I won't get into the exact details, but it's fairly easy. You take a milligram of dexamethasone, it's one pill, you take it around 11 o' clock at night, and then you go in the morning and they measure your cortisol level. And when you take dexamethasone, it's another steroid, it should suppress a healthy adrenal gland from secreting excess steroids, including cortisol. So normally the cortisol level should be suppressed in the morning. And then you ordered for Phil the cortisol level, which was way above normal, which tells you that Phil had hypercortisolism. And then the next stage, of course, would be to find out the source of where the cortisol level is coming from. And how was that story with Phil? And Phil, you're allowed to talk now. I know you're married, but you still are allowed to talk.

[C]

Yeah. You can talk about that if you want.

[B]

Yeah. So we, we, we. We didn't figure out where it's coming from, I guess. Right?

[C]

Yeah. His imaging was negative.

[B]

Yeah.

[C]

Yeah.

[B]

And then. So it's still a mystery where it's coming from?

[C]

Not really, no.

[B]

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

[C]

Tell them your A1C.

[B]

A1C was 6.1.

[A]

We. We allow bragging on the show. Yeah, that's. 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. Little tumors that over secrete cortisol. And when you don't find it anywhere, that's where these medications can really help. And I should just mention the second half of this catalyst study. They took these people who were diagnosed as having hypercortisolism, and they gave them a very specific medication to bring down to shut off the production. And everything that was causing issues in these patients actually got better. Just like you. The diabetes got better, the blood pressure 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. And you're lucky that you got the diagnosis. And who, who knows how long you had it. You may have had it for five years, even longer. Cause your symptoms were pretty severe by the time Clarice finally made the diagnosis. And so how long have you been on this therapy?

[B]

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

[A]

Yeah. And so the medications you're on, are you on. Did you. Were you able to reduce your diabetes medications or your blood pressure medications, for example?

[B]

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

[A]

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

[C]

Yeah, I have noticed it's not fair, but he does look like a trained athlete with no effort. It's kind of his muscle mass has increased and his. Yeah, yeah.

[A]

Well, you know what? I applaud you for hanging in there with him as his fiance, now married to him, getting the proper therapy. And I think it's important to talk about this a little bit as we get near the end is some reflections and lessons that you two went through that could possibly help other people listening 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 for both of you on this?

[C]

I am so glad that you brought that up because as a family medicine and lifestyle medicine provider, I have had patients, I've 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 the tumor as an incidental finding on imaging, and they have the symptoms before they progress. And the insurance company denying 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 hypercortisol. Get online. There's more information out there. There's symptom checklists you can complete. And sometimes you have to be your own best advocate. And in Phil's 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 hypercortisol. So don't despair. Sometimes you have to be your own best advocate. That's just how it goes down. But if. If you are struggling and you know that you are following all the rules, the ex 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.

[A]

Yeah. You know, I love that statement. You have to be your own best advocate. Because when I founded TCOID only 30 years ago, you know, I had three themes, and one of them was, you have to be your own best advocate, be smart and be persistent, and take control of your diabetes. So I think, just to sort of summarize, I think your story is pretty classic where you developed type 2 diabetes. I'm not sure if it runs in your family or not, but you developed could have been caused by excess cortisol at that time, but you just don't know. It's a pretty common genetic condition. And despite really watching a good diet, getting help from your fiance at the time, on four different medications, your blood sugars were still 2 to 300 milligrams per deciliter. And it also occurs when people have high blood pressure that's very difficult to control despite multiple medications. So, you know, they kind of go along together. We call it the metabolic syndrome. So I think people need to think about what makes sense and what doesn't make sense. So 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 glucoses are very tough to control, your blood pressure's tough to control, then this is something that should, you know, a red light should go in your mind and 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 other videos for healthcare professionals as well. And I think what you said is you have to be your own advocate. That's true with any condition. And I think having a good communication with your healthcare professional is always good. Don't go in there start yelling and screaming, but go in there with some nice things to say and 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? Any closing other comments, Phil?

[B]

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

[A]

Yeah. It's not a new condition. It's a unrecognized condition that NOW is bringing. Now is there's 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. And thank you for sharing your story because it's going to help others that listen and watch to it.

[C]

Yeah. Thank you. Thank you for.

[A]

All right. So for all of you viewers and listeners out there, make sure that you like us, you follow us, send your questions in comments. We will answer all of them. And thank you for joining our TCOID podcast today.

[B]

Sam.