High Cortisol is Not Always Cushing’s

Editor’s Note: This patient story originally appeared in our Summer 2016 issue.  We contacted Mona recently to see how she is doing now; her update follows her original story.

In 2004, I decided it was time to lose weight.  I lost 100 pounds in a year on a low-carb diet.  I felt fantastic.  Then, I started feeling sick.  My doctor recommended adding more carbs to my diet.  I added mostly vegetables and fruit, but the weight began creeping back up.  I removed all fruit, and later went back to full low-carb (no fruits or vegetables) and my weight still went up.  I was eating healthier and exercising every day and my weight was still going up.  By 2008, I had gained back the 100 pounds and then some.  In desperation, I went to an endocrinologist to figure out what was wrong with my metabolism.  He checked my thyroid, which was fine, and then told me to eat less and exercise more.  I was mortified.  I cried all the way home because I knew that I was already doing the best I could.

I tried many different diets over the next few years and all types of exercise regimens and still no results.  I saw other endocrinologists who also dismissed me.  One told me that I was morbidly obese and I would get diabetes if I didn’t lose weight.  He also said exercise and eat less.  Ugh not again.  I was getting nowhere fast.

By 2014, I had many health issues and no explanations.  I was getting rashes that wouldn’t go away.  I was getting depressed because I was losing hope.  I was very tired and could barely function.  I was bruising easily and slow in healing.  I went from doctor to doctor with no results.  At the end of 2014, I went to an allergist about my rashes.  Since there was no visible rash at my appointment, I asked him if my inability to lose weight could be related to food allergies.  He stated that food allergies typically cause a person to be very sick and throw up.  He mentioned that some people with food sensitivities have difficulty losing weight and gave me an article on that subject.

I eagerly read the article and it made sense.  I began an anti-inflammatory diet called “The Plan” to identify food sensitivities by introducing highly sensitive foods one at a time.  I lost 30 pounds in 2 months, then plateaued.  I worked with a naturopathic doctor affiliated with “The Plan”.  She tried several things: lowering my histamine levels by taking MSM (a sulfur compound), building my immunity through probiotics, and addressing my yeast overgrowth.  Nothing worked: my weight would not budge.  In April 2015, I went to a local naturopathic doctor, who was understanding and believed that I was eating right and exercising daily.  She decided to do hormone tests, including a cortisol test.  My cortisol levels were 10 times higher than they should be at night.  Another in-depth cortisol test confirmed my cortisol was out of control at night.  She explained that she believed I had Cushing’s syndrome and that I needed to see an endocrinologist.

I made an appointment and waited 4 months to see the endocrinologist.  The endocrinologist dismissed the tests because a naturopathic doctor ordered them.  She refused to do further testing for Cushing’s.  I can’t begin to describe my frustration.  I left another doctor’s office crying.  This was becoming a pattern.

Luckily, I am persistent and sent my cortisol results to another endocrinologist for a second opinion.  This doctor suggested more tests, but she was in California and I live in South Carolina.  Most endocrinologists in my area were not taking new patients, but I found one 2 hours away.

A few weeks later, I went to this new endocrinologist with my cortisol results in hand.  She was wonderful.  She sensed my stress, took my hand and said, “Don’t worry; we will figure out what is going on.”  She wanted to find out why my cortisol levels were only out of range at night and early morning.  She recommended a sleep study to see if I had sleep apnea.  She explained that sleep apnea can cause cortisol levels to rise because your body is stressed when you are not breathing at night.  And when your cortisol levels are high, you can’t lose weight.

Two weeks later, I had a sleep study that showed I have moderate sleep apnea.  My oxygen levels dropped below 60% at night (it should be above 90%).  Two weeks later, I had a second sleep study to set the proper air pressure level that I need.  By November 2015, I had my CPAP (continuous positive airway pressure).  My quality of life has improved significantly.  The weight is coming off consistently now, the rashes are gone, my hair is growing back in, the depression is gone, and I am healing a lot faster.  God is good!

I am telling my story because not all cases of elevated cortisol are due to a tumor.  Sometimes there is another reason for high cortisol, and you need to take the time to figure it out.  I am just glad that God guided me to the right answer for me.

We recently asked Mona for an update, and she said: I am doing great.  I can’t believe how much better I feel since I started using my CPAP.   My cortisol levels are all back to normal and all of my symptoms have vanished.  I had been getting progressively worse for 2 years before the doctors finally figured out what was going on.  In retrospect, it should have been one of the first things they suspected.

Winter/Spring, 2019