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Carol's Story

December 2006

Undiagnosed but figure it is just a matter of time before I become diagnosed with adrenal Cushing's. I couldn't gain weight as a child, no matter how hard I tried. When I graduated high school I was 5'9" and weighed 113 pounds.

I believe I began my Cushing's journey about 24 years ago when I was on prednisone due to hormonal imbalances. My Doctor at the time (was being treated for infertility) put me on a low dose of prednisone and left me on it for five years. During this time I gained about 40 pounds. I had been taking other medicines for infertility treatment and figured that all the medicines had caused the weight gain. I finally had resolution of my infertility with a successful IVF cycle and in 1992 was a proud mom of a baby boy.

In 1997 I was in a very bad car accident and had a head injury. My knees were also hurt in the crash. Walking became extremely painful, so exercise was not an option. I did continue to work and do have to walk in my line of work.

About 6-7 years ago I began gaining weight so rapidly I was worried that I had a fast growing tumor in my abdomen. I also had pain in my upper right quadrant right under the lower ribs. The Doctor at the time just kept telling me I was eating too much and not getting enough exercise. I remember asking him if he would wait until I weighed 300 pounds to decide to look into the problem. When I explained to him that I jumped two sizes in clothes within 2-3 weeks, he was alarmed and ordered a few tests. The CT scan came back normal and he sent me to a surgeon regarding the pain in the URQ. He did discover a fatty liver in the process of looking for the cause. The surgeon ordered some tests on my gallbladder and said if it came back bad, he could operate and take a look around to see if he could find a cause (he didn't really think it was my gallbladder). I waited and decided against having the surgery. I continued to gain weight and switched primary physicians.

For a long time, I didn't ask my new Doctor "Why was I getting so fat on a 1,200 or less calorie diet?" because I assumed he would just tell me that I needed to eat less and exercise more. When I did bring it up to him he suggested I purchase a pedometer and see just how much walking I did a day. I work 70-90 hours a week and had considered myself to be pretty active. My average steps per day were about 4500. So, I thought maybe he was right; I just needed to exercise more. I had gained another 83 pounds. I cut my diet back to about 800 calories a day and skipped most of my meals.

My Dad's answer to my weight problem was to just quit eating. He of course had gained weight at one time in his life and just quit eating until he lost it... yeah right... I remember those days and he didn't quit eating, he just ate less. Being the stubborn person that I am I would just quit eating and once even made it three days without one bite of food.

I tried exercise, but my knees hurt so bad. They would ache all night if I walked a lot and I didn't want to live on pain medicine.

This fall I had a urinary problem that led to another CT scan. This scan revealed spot on my liver. The radiologist suggested I have an MRI to rule out cirrhosis of the liver. The MRI revealed a similar result. I went to a liver specialist and had another MRI. It was this second MRI that revealed a small adenoma on my adrenal gland.

During the time period between the CT scan this fall and the time I saw the liver specialist, I went on an all veggie diet and exercise plan and did lose 23 pounds. The liver Doctor asked me to stop the diet until I was through liver testing.

My Doctor said he is going to talk to me about having additional testing done when I have my next appointment with him.

Listing all of my symptoms whether or not they are related:

A total of 123 pound weight gain – of this I attribute 30 lbs to a lack of exercise and poor diet. Once I gained 100 lbs, I did begin to overeat – well, that is if you consider 1500-1600 calories overeating.

The beginnings of a hump – not large enough yet to photograph well but I can feel it and my husband can see it.

A darkened area of skin outlining where I wore a watch over 4 years ago – it looks dirty but believe me it will not wash off!

Seriously dry elbows

H.I.D.E. Multiple skin boils – began approx. 22 years ago.

Red palms

Freckles and raised moles – have gained hundreds if not thousands over the past few years.

Sleep apnea

Fat face and neck

Insomnia cyclical with bouts of sleeping for 16 or more hours per day

Cognitive problems – I can't carry on a conversation without forgetting what I am talking about.

Edema – feet, ankles, legs, body, face

Stretch Marks – started a few years prior to my pregnancy, gained new ones in the gain after my pregnancy – they are not dark though

Visual Field problems

Puffy eyes

Optic Nerve problems (appeared genetic to ophthalmologists)

Eye droops – neurologist (sleep Doctor) asked how long ago I had Bells Palsy – she thought it was a leftover remnant of it.

Hair – Yes plenty of facial and chin hair

Rapid Heart Beat (although it is slower the past few years than it used to be)

Low Blood Pressure – changing though – have recorded high blood pressure although it is always low at the Doctor's office, go figure

1992 – 2002 Cardiomyopathy – strangely disappeared (glad it did)

Bad cholesterol high, Good Cholesterol low

Exhaustion after limited exercise

General feeling of tiredness

Unrestorative sleep

Previous history of ulcers

Borderline Diabetes

History of colon polyps

Increase in allergies

Yeast infection in skin folds

Loss of muscle tone

Skin color changes – darkened

Caffeine doesn't seem to wake me up like it used to

Pain in Upper Right Quandrant

Shooting nerve like pains in head

Fatty liver

Incidentally, I worked 13 years in a factory around solvents – burned my skin and changed the skin on my hands – If you only saw my hands you would think I was like 85, I am 47.

Always had a lack of energy and became drained easily

Arms and legs thin in comparison to my large body.

Voice has became deeper - people confuse me with a man on the phone grrrrrrrrrrrrr

Back aches when I have been on my feet a short period of time – has always done this even before all the weight collected on my body like a magnet arghhhhhh