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Emotional Health in Adults with Cushing’s and Adrenal Insufficiency

A summary of the AIU meeting presentation by Kyle Gillett, PhD, LMFT, Asheville, NC

We need to broaden and never pause in the conversation about mental health, depression, and neuropsychological changes due to excess or deficient cortisol.  There is no room to consider them any less important than our other symptoms.  The average risk of depression in the general population is about 9.5%, and the average risk for anxiety is 18%.  Add a chronic illness to the equation and the likelihood of depression or anxiety jumps to 28%.  Specify Cushing’s and the risk goes up to a staggering 50-90% for depression and around 79% for anxiety.  It is the norm, not the exception.  Patients report guilt, anger, loss, and feelings of rejection by friends and family who don’t understand.  Too many of us struggle silently, afraid to burden our loved ones with yet another aspect of our disease.  We would be doing ourselves a favor to seek professional help from someone who has the tools and experience to hear what we are saying and help us work through it.  Occasionally or regularly, why shouldn’t it be considered part of our specialist appointment routines?

Emotional stress also hits hard on the low end of the cortisol spectrum: it is the third leading cause of adrenal crisis, preceded only by gastrointestinal issues and fever.  From a neurological perspective, when faced with a stressor, if the body’s normal ability to bring stress back down to normal level isn’t well regulated, the stress can become a trauma.  When your body is deficient in the hormone that controls stress response, efforts to “deal with” the stress don’t do anything to replenish the diminished hormones and steroids in your body and can lead to the crisis.  

It would be great if the issue was solved by simply taking replacement hormones and steroids.  Unfortunately, research suggests that depression still exists in about 35% of patients six months after starting hormone replacement therapy.  After a year of treatment, that number is still too high at 25%. 

Why so prevalent?  Among more obvious reasons, hormones impact how neurotransmitters work and thus directly impact psychological and emotional functioning.  Things we do repeatedly in life create “superhighways” of heightened connections in the brain.  Dr. Gillett hypothesizes that patients with Cushing’s and/or adrenal insufficiency (AI) are more likely to be and stay depressed and full of anxiety because our brains have repeated the stress response so often that they have become trained to exaggerate it with every single thing that comes our way in life.

It is an easy segue to address post-traumatic stress disorder (PTSD) and the high prevalence of its existence in relation to Cushing’s or Addison’s:

  • re-experience symptoms – bad dreams, frightening thoughts
  • avoidance symptoms – staying away from things that remind, emotionally numb, strong feelings of guilt, depression or worry, loss of interest in previous enjoyments
  • hyperarousal symptoms – easily startled, quick to respond

Many pieces of news we get on the Cushing’s journey are sad.  The way we feel makes us sad.  If we also have a little (or a lot of) depression going on, it might be difficult to always tell the difference.  The following are examples of feelings that are not just sadness:

  • it is hard to still enjoy things you like
  • your emotions are about a specific event or thing rather than general
  • you are not maintaining normal eating and sleeping routines
  • you have self-punishing or extremely self-critical thoughts
  • you have self-harming thoughts

Stress and anxiety often dress like each other but have some basic differences:

  • anxiety is internal, stress tends to be external
  • stress eventually comes to an end, anxiety is still there after the problem is resolved
  • in stress the worry is justified, in anxiety the worry is distorted and amplified
  • unlike stress, anxiety can bring on a panic attack (reported to feel like a heart attack, difficult time breathing, tightening of muscles, increase in heart rate and pulse, and flushing of the skin which is often hot and sweaty)

Other types of anxiety include but are not limited to OCD, panic disorder, and specific phobias.  Other challenges include but are not limited to substance abuse, the inescapable drag of “why me?”, and suicidal thoughts.  It isn’t easy, and if you already showed up to the game with some baggage, you have that many more reasons to create the softest landing spot for yourself when the burdens of these diseases really make themselves known in your life.  Please PERSIST and find a professional who can partner with you on your mental health.

Summer, 2018

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