So, as I previously mentioned, I have been doing a bunch of tests to try to figure out why my cortisol levels have been high. Cortisol is a hormone that most of us hear about primarily in reference to stress — it’s important in the fight-or-flight response — but it does many other things as well, including playing roles in regulating the immune system and the metabolism of glucose. Abnormally high levels of cortisol can be a sign of Cushing’s Disease – a disorder where your body produces too much cortisol, often as a result of a tumor on the pituitary gland.
I’d first figured out that I had high levels when my allergist ordered a ton of lab work to try to figure out some skin issues I’ve been having. Her main verdict was that I’m crazily allergic to many things, in particular cats and grass, but she also noticed that I had high cortisol levels in my blood. So she ordered another test. It was high again. “That’s odd,” she said. “You might want to ask your endocrinologist about it.”
My endocrinologist didn’t seem overly concerned, but she gave me three little “salivettes” — plastic vials with a piece of cotton that you chew right before bed (which is when cortisol levels are usually the lowest) and an empty jug that I was to fill with 24 hours’ worth of urine for what’s known as a “free cortisol” test (which sounds like a political movement, but actually just refers to the amount of cortisol that’s not been bound to protein).
I waited till the very end of the year, and then — in a last-minute dash to take care of all of my medical needs before my deductible reset — did the tests. The results? One of the salivary tests came back high. And the urine was most definitely elevated — the normal limit is about 50 mcg produced per day, and my level was around 84. My doctor was concerned, especially about the urine result, so she made me an appointment with a different endocrinologist, who ordered two more urine collections and two more blood tests.
By the time all this testing was done, I was pretty sick of carrying around jugs of my own pee — but I was also very confused. The second two urine tests came back right on the border (one was in the high 40s, the other in the low 50s). The blood was high. But the test they did to see if I was producing more than normal of ACTH (adrenocorticotropic hormone — involved in cortisol production) was normal. Oh, and as was true before, I don’t have any signs of Cushing’s disease, which include purplish streaks on your skin, weight gain around your middle, a red face, easy bruising, or inexplicable muscular fatigue. The first doctor I spoke with spent several minutes staring at the results of my tests, circling particular numbers, and thinking, before eventually turning to me and saying, “I don’t have an answer for you about what is going on.”
From the patient perspective it certainly was confusing: three elevated blood tests, two out of three elevated urine tests, one out of three elevated salivary tests, and a normal ACTH level. I personally was not worried about the possibility of having Cushing’s, mostly because I don’t have any of the symptoms, and I have been under a lot of stress. What I was — and am — worried about was what the effect of chronically high cortisol levels could be. I mean, I do everything I can to reduce my stress, including sleeping a lot, exercising regularly and trying to meditate several times a week. I don’t actually feel the stress in my body the way I did say, in high school when I was applying to college (my chest would clench up and I felt like I couldn’t breathe). So if I felt normal and was doing everything right — and yet still had high results — what did that say about times when I really did feel physically stressed?
In any case, the appointment ended up lasting for three hours, and the conclusion at the end of it was that yes, they think it’s just stress. Along the way I learned several other things that might be useful to share, including that apparently taking oral contraceptives can interfere with the results of the blood test and give you falsely elevated results. I am a little bit pissed about this, since I had three different blood tests done and no one, doctors or lab techs, asked me about birth control. (This would seem like a common enough issue that it’d be worth at least noting in the patient’s chart, right?) So much for those three additional venipuncture wounds. (I feel very protective of my veins given all the blood work diabetes requires.) As for the salivary results, I know that one of those tests was on a day where I’d had to travel to New York to give a presentation to a bunch of chemists about vitamins — stressful. The urine was not as easily explained, but the second doctor said that she considered Cushing’s to really start around 150 mcg or higher; anything under that really could just be a result of environmental factors.
So I bring this up in reference to diabetes because when I was trying to think about my emotional condition over the past couple months, I can definitely say that I’ve been more stressed than normal. We had work being done on our house every day from September to January; before that, we were moving in and redoing everything from paint to jacking up part of a floor that had started to collapse. There was a layer of dust on everything in the house, so thick that even the contractors said they were impressed by our patience. Oh, and I’m also in the process of writing a book that consistently makes me feel like my head is in a vice. So, there’s all that.
But on the day when I did that truly elevated urine test, I was not dealing with house stuff or work stuff. The house projects were finished; it was several days after Christmas and I was attempting to actually relax. I hadn’t exercised in several days. It was the least stressful period I’d had in months. And yet it was still in the 80s?
Cortisol and Diabetes: Hypoglycemia
The doctor had mentioned that one potential confounding variable is hypoglycemia: as I noted, cortisol plays a role in glucose metabolism, and if you have a hypo, cortisol is one of the hormones your body will release to try to get you back to normal. One response to a hypo, she said, could account for an abnormal collection for the day. (I had kept track of other things I’d done the day of the collection, but hypoglycemia was not one of them.) So that was interesting.
Stress, Diabetes and Cortisol
But the other thing that struck me as I was talking with her about environmental stress is just the daily toll of living with diabetes — the jolt of stress I feel every time I see an elevated number on my glucometer’s screen, or my Dexcom starts beeping that I’m high, or even when I give myself a bolus for an unusual meal. Type 1 diabetes is inherently stressful. Perhaps that itself could be accounting for some of the elevation.
She told me that studies had been done on people living with poorly controlled Type 2 diabetes, alcoholism and depression — presumably conditions that contributed significantly to stress. But not Type 1. Just as I was frustrated that no one had asked me about contraceptive use, I was also bothered that no one has studied what seems to me to be such an obvious connection.
The good news, of course, is that she confirmed that it does not seem that I have Cushing’s. She left the room telling me not to worry at all about my cortisol levels — I’ll do the tests once more next year to make sure nothing’s changed, but she’s not concerned about it. So, despite my frustrations, I’m relieved that — at least in terms of my hormones — I’ve got one less thing to stress about.