Significantly Elevated Cortisol Levels, only at night.

Posted by austin55 @austin55, Jul 1, 2021

Hello, here is information about what I have going on. Feel free to ask any questions, and I am only looking for suggestions and comments about what I should do from here.

I am 22 years old, male, and weight 195 pounds, with a muscular build.

Symptoms:
-Fatigue
-Severe Brain Fog
-Elevated Anxiety
-Depression Symptoms, mostly loss of motivation and pleasure from activities I used to enjoy
-Sleep issue being that I wake up in the middle of the night gasping for breath, feeling like I had a rush of adrenaline with heart racing

I have been experiencing these symptoms my entire life and they have gotten progressively worse, with the exception for the sleep issue, which has gotten worse since I gained weight over the past few months.

I took an at home cortisol test, and my levels were extremely elevated from the 1st collection I took, immediately after waking at 8am. The 4th collection after dinner was slightly low. This was a urine test. I slept all night without issue before the test.

1st collection: 88 ug/g (normal range 7.8-29.5)
2nd collection: 23.7 ug/g (normal range 23.4-68.9)
3rd collection: 10 ug/g (normal range 30.6-88.5)
4th collection: 15.2 ug/g (normal range 15.5-44.7)

I believe I have REM-induced sleep apnea, which explains why my entire life I seemed to not dream much. I am working with a sleep doctor on this now, but progress is slow. My main question is as follows:

My 1st collection cortisol level was very elevated, nearly 3 times the normal amount. What can explain such a high cortisol level? Could emotional stress cause it to be this high? Could it be explained by the apnea? Or are levels this high only seen with an adrenal tumor/Cushing's disease?

I am trying to find the root cause of the issues I have had my entire life. I believe there is a physical aspect causing the psychological issues to be this bad. I have bought a CPAP machine from a friend and am using it, since progress from sleep doctor and getting diagnosed is very slow. I feared without doing this on my own I would not be able to function day to day anymore due to lack of sleep, or that I might have a cardiovascular event due to the severe adrenaline/heart pounding events. My first sleep study did not pick up any apneas, but I only obtained light sleep, and only 2.5 hrs of it due to anxiety from the study/environment. Since using the CPAP I have been experiencing rebound REM, very vivid dreams almost every night. If my mask comes loose, or I have a leak in air pressure, I wake up gasping for breath, and the dream turns violent in an attempt to wake me up.

I guess my main concern and reason for posting is to find out whether its worth it right now to pursue investigating with my primary doctor the elevated cortisol levels, if there is a chance that my root cause is related to that, or if I should just keep using my CPAP and working with a sleep doctor to see if my symptoms slowly improve over time. Since using the CPAP for about a week now, I do not feel any better. I really need information/suggestions because being that I am young, look healthy, and have normal routine blood work, doctors in my area have always been dismissive. Every diagnostic test I have had aside from routine blood work I had to bring it up and ask for it. I have been going to therapy my whole life, and tried antidepressants when I was in my teens for several years. Treating only the psychological aspects has gotten me no progress.

Thank you in advance, help is much needed.

Interested in more discussions like this? Go to the Diabetes & Endocrine System group.

Hi Austin,
This reference from the University of Rochester Medical Center may help your research about the role of cortisol.
– Cortisol https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=167&contentid=cortisol_serum

I certainly think that you should discuss with your primary doctor.

REPLY

Hello @austin55, I would like to add my welcome to Connect along with @colleenyoung and others. I've used a CPAP for a little over 2 years and can tell you from all of the CPAP users I have talked with it takes more than a year of use before you start seeing benefits of using the CPAP. I've had some really weird dreams myself and when I was younger I had a few recurring dreams that I would recognize it was a dream and wake up. I agree with Colleen about discussing your concerns with your doctor. Here are a couple of articles on using CPAPs and dreams that I thought you might find interesting and maybe helpful.

— Changes in dreaming induced by CPAP in severe obstructive sleep apnea syndrome patients: https://pubmed.ncbi.nlm.nih.gov/17118100/
— The Mind Revealed: Learn More About Sleep Apnea Dreams and Nightmares: https://www.cpap.com/blog/sleep-apnea-dreams-and-nightmares/

You may be interested in other discussions related to using a CPAP machine in the Sleep Health group here: https://connect.mayoclinic.org/group/sleep-health/

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@austin55 – You are young and it is difficult to deal with never feeling well.
I think it would be a good idea for you to work with a sleep doctor to get the best use out of your CPAP, getting the correct setting.
Also, regarding your elevated cortisol, you probably should see an endocrinologist for a correct evaluation of your cortisol levels. You could get 8 am cortisol done by your physician as well as 24 hr urine collection for cortisol before seeing an endocrinologist.
I have a daughter who had Cushing’s and we learned that cortisol levels can change from one week to the next. Often repeated testing is needed.
I would appreciate it very much if you continue to post so we can follow your journey.

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Thank you all very much for the replies and links.

My in-lab sleep study being only 2.5 hrs, only detected a couple of apneas per hour, which they said was normal. I then had an at-home sleep study, where I slept 7 hrs. They said the results were the same, at the normal level of apneas per hour. However, they did say I had some disruptions in my deep sleep, which I will discuss with the doctor about when I have my appointment in a month. I'm guessing it will be chalked up to anxiety or lifestyle changed needed. I wish that was the case, but my lifestyle is just as good or better than everyone I know, and I'm the only one with these issues. In the meantime I am going to take another at-home cortisol test to see if my levels are still elevated after I've been using the CPAP for about a month now. If they are, then most definitely will try to get to an endocrinologist ASAP…

Since starting the CPAP I've gotten compliments from mostly everyone I know that I sound better, sound happy, and look better. Its definitely helping me sleep, whether I have sleep apnea or not. Hopefully I will just need to give it more time to improve my energy levels. Its so hard on me to get these test results back saying I don't have sleep apnea, when I feel like I do, and the CPAP seems to help me. I don't know what to think.

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