Cushing's disease is a hormonal disorder caused by prolonged exposure to high cortisol levels, often due to a pituitary tumor. The author shares her personal journey through misdiagnosis, extensive testing, and multiple surgeries, ultimately leading to permanent health issues and disability. Despite the challenges, she emphasizes the importance of seeking help and understanding the disease's impact on individuals.

1. Disease/Syndrome
By: Sherry Carlson, NCMA

2. Cushing's Disease/ Cushing's Syndrome:
Cushing's is a hormonal disorder caused by prolonged
exposure of the body's tissues to high levels of the
hormone cortisol. Your adrenal glands, which are right
above your kidneys, release cortisol when they receive a
chemical message from your pituitary gland. The message
comes in the form of adrenocorticotrophic hormone
(ACTH), which travels through the bloodstream.
The pituitary gland is known as the “Master gland of the
body” and is about the size of a pea.

3. Cushing's Disease: Is the result of a pituitary tumor
and the inappropriate production of ACTH.
Cushing's Syndrome: Causes the same
symptoms, but is a disorder marked by
overproduction of adrenal hormones, Cushing’s
syndrome is all other forms of Cushing’s.

4. “They say Cushing’s is rare, it’s not true it’s just rarely diagnosed”
Causes of Cushing’s
 a benign tumor of the pituitary gland
 a benign tumor of the adrenal gland
 a benign tumor of the lung or other organ
 extensive use of cortisone medication

5. Pituitary Hormones and Adrenals

6. Page 1. My Story
1999- First occurrence of my mystery illness, started getting sick off and on and my PCP
did not know what was wrong, I went from doctor to doctor for years. I would have bouts
of illness, then be fine and have all the energy in the world. He finally gave up and threw
his arms in the air and walked out of the room. 2004 was the first I heard of Cushing’s
and went on line and joined a support group cushings-help.com. I was then convinced
this is what I had, they suggested a Endocrinologist at OHSU pituitary clinic. I saw him
and he was very suspicious that this is was indeed what I had. He did a MRI and I did
have a pituitary tumor on the left side, although he saw tumor on both sides, finally we
had answers.
2005-I tested for a full year before I got my diagnosis (which is not unusual). My doctor
described the tumor like a light bulb turning on and off. I started with cyclical Cushing’s
(Tumor turning off and on) then went Florid (Tumor staying on) at the end of testing
and I did indeed have Cushing’s disease. Testing included a MRI, Serum Cortisol and
ACTH, 24 hour urine cortisol, midnight saliva and serum testing, low dose Dex testing.
Diurnal testing where I had a PICC line (Peripherally Inserted Central Catheter) and
drew blood every 4 hours for 24 hours. In people with Cushing’s, their diurnal clock is off
so your Cortisol is high at night, It should be 0 at midnight mine was as high as 34, >7.5 is
positive. These tests where done over and over, it was a year of hell. It took over my life.
Even testing at work doing my 24 hour urine tests. Until I got too sick and had to leave
my beloved job at PPC. In my personal experience Cushing’s is like a robber in the night
stealing everything and it stole my life as I knew it. Cortisol in excess is like battery acid
and did major permanent damage to my body.

7. Page 2. On to surgery and life today
2006- February I had my IPSS Petrosal Sinus Sampling (a thin flexible wire is guided from the groin to
the brain to sample fluid from both sides of the pituitary gland to measure the ACTH to see which
side is higher, this tells which side the pituitary tumor is located) my tumor lateralized to the left.
3/23 I had my first a unsuccessful Transphenoidal surgery (surgery with very small instruments and
a intaoprative MRI goes through the nose to the pituitary gland) they removed the whole left side of
my pituitary gland but still had tumor making ACTH, 10/12 I had my second unsuccessful
Transphenoidal surgery , they removed all but 10% of my Pituitary gland and what was left
died, and finally 11/6 I had my BLA Bilateraladrenalectomy (Removal of the adrenal glands to stop
the ACTH from reaching the adrenals to stop cortisol production). No adrenal glands means being
on steroids for the rest of my life among many other meds due to no pituitary.
2012-My life today is not as it should be with all these surgeries and I am still sick. I take 23 pills a day
and one injection. I have to go to an out patient clinic to get IV fluids 2-3x a week. I am on
permanent social security disability. I am in and out of the hospital so much it is my second home.
This is on my emergency list: Addison’s disease/Steroid induced Cushing’s
syndrome, Dysautonomia, Panhypopituitary, Chronic Nausea, Asthma, Type 2
Diabetes, Hypothyroid, Fibromyalgia, Lumbosacral spondylosis, Facet arthropathy of the lumbar
spine, Permanent nerve damage lower lumbar spine, Osteoporosis, Osteoarthritis, Severe
Neuropathy in both lower extremities, benign essential tremors , Hx Cushing’s disease, Hx TIA like
symptoms, Hx sepsis x4, Hx Depression, Hx Anxiety, Fractured both hips in 2/2009, Fractured right
ankle 9/2009. Full r knee replacement 2/2011 (not healed after 1 year). Life is what it is and I take
each day one at a time. I am 43 and feel like a 90 year old. But I am alive and thankful for that!

8. Progression of the disease
1996-2005

9. Cushing’s at it’s worst
Moon face Larger torso and face

10. My symptoms of Cushing’s Disease before surgery
 Symptoms of my highs  Other Physical indicators
 Dorsocervical hump
 Extreme increase in energy
 Some fat filling around collar bones
 Especially at night  Midsection weight gain
 Red face  Irregular menses
 Anxiety  Round swollen face
 Acne  Health Conditions
 No aches  High Cholesterol
 High Triglycerides
 No nausea
 Hyper and hypoglycemia (low 63-high 280)
  Extreme spikes of B/P (highest 190/155)
 Symptoms of my lows  Tachycardia
 Decrease or no energy  Fatty Liver
 Gastritis and Duodenitis
 Headaches
 Mild slowing on EEG
 Nausea-occasional vomiting  Pituitary Adenoma
 Achy muscles and joints and bones  Migraines
 Dizziness  Symptoms of at least 4 TIA’s
 Feeling of buzzing in and out like an electrical  Syncope
short.  Memory and cognitive skills diminished
 Superficial skin infections
 Parasthesias 

 Weight loss

11. Symptoms of Cushing’s
 A person can have more of less of these symptoms:

12. Take home lesson
 2-5 people out of a million will be diagnosed each year. It is
suppose to be rare. What I have learned from the thousands of
others on cushing_help.com and Facebook over the past 8 years is
“Cushing’s is not rare, it’s just rarely diagnosed.” It is hard to find a
Endocrinologist that specializes in Cushing’s but they are out
there.
 If you or someone you know has the symptoms of Cushing’s please
seek help, it is a long road and you must find the right Endo, but it
is fatal if not treated.
 Please don’t judge other people, they might be fat because of
Cushing’s or they might have some other disease that makes them
different. It is hurtful when you used to weight 130# then jump up
to 220# in a matter of a few years and people treat you different.
 If you have any questions for me, just ask your instructor for my
information, I would be happy to help.

13. “If tomorrow starts with out me”
If tomorrow starts without me, And I'm not there to see,
If the sun should rise and find your eyes all filled with tears for me;
I wish so much you wouldn't cry the way you did today,
While thinking of the many things we didn't get to say.
I know how much you love me, as much as I love you,
And each time that you think of me, I know you'll miss me too;
But when tomorrow starts without me, please try to understand,
An angel came and called my name, and took me by the hand,
And said my place was ready, in Heaven far above,
And that I'd have to leave behind all those I dearly love.
But as I turned to walk away, a tear fell from my eye,
For all my life, I'd always thought, I didn't want to die.
I had so much to live for, so much left yet to do,
It seemed almost impossible, That I was leaving you.
I thought of all the yesterdays, the good ones and the bad,
I thought of all that we shared, and all the fun we had.
If I could relive yesterday, just even for a while,
I'd say good-bye and hug you And maybe see you smile.
But then I fully realized, that this could never be,
For emptiness and memories, Would take the place of me.
And when I thought of worldly things I might miss some tomorrow,
I thought of you, and when I did, my heart was filled with sorrow.
But when I walked through heaven's gates, I felt so much at home.
When God looked down and smiled at me, from His great golden throne,
He said, "This is eternity, And all I've promised you.
Today your life on earth is past, But here life starts anew.
I promise no tomorrow , But today will always last,
And since each day is the same way, There's no longing for the past. "
So when tomorrow starts without me, don't think we're far apart,
For every time you think of me, I'm right there, in your heart.

14. The End
By: Sherry Carlson, NCMA