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Cheryl's Story

Hi -- my name is Cheryl and this is my story.

It seems like my Cushing's story starts when I had mono in '89. After that, my health went downhill. During the next 12 or so years until I was diagnosed in '02 at the age of 36 I was always sick with something.

So here we go with the list -- are you ready for this ?? Had kidney stones 2 years in a row at the ripe old age of 26/27. After that I had chronic bronchitis (the first time almost pneumonia), developed allergies, got throat infections, and had an ulcer. Started gaining upper body weight and couldn't lose it no matter how I ate or exercised. It didn't help that every time I exercised, I got sick. After a while, I was sick of getting sick :-)

My doctor at the time saw me often but didn't seem to catch on that I had a serious problem. He put me on a "diabetic" diet which I followed, but of course lost no weight which was extremely frustrating. I ended up gaining a total amount of approximately 75 pounds.

Gradually, my face rounded out, then got bright red, and I developed a hump in my back. During this time, I started getting menopausal symptoms -- hair loss, gradual changes in my period until it stopped completely (in 1999), and thinning skin that bruised easily. My ob/gyn said it was stress and put me on bc which did not work. I was tested for hormone levels, PCOS, and thyroid which were all normal at the time of testing.

My bones had gotten so soft that I fractured my left foot twice in two years just by taking a misstep when walking. I fell and fractured my upper arm, and once coughed hard enough to "spring" one of my floating ribs after one of my bronchitis/throat infection bouts. (It sprung back, but can still be a pain :-) The weakness, fatigue, and muscle achiness everywhere were constant. It was getting more and more difficult to think clearly, and my moods swung from euphoric to depression constantly.

Finally, I saw a family doctor who took one look at me and had my cortisol level tested, then a dex test -- both elevated. During that time (Dec. 2001) I was also diagnosed with Type II diabetes. Brain MRI's showed no tumor, and I was referred to an endo. CRH was inconclusive as to origin, and I was referred to another endo who specializes in Cushing's (I still see him). By this time, I was on meds for diabetes, acid reflux, heart palpitations, allergies, and anxiety. My vision was starting to be affected and I could no longer wear contacts. My skin was getting very dry and scaly.

After undergoing 24-hour urine cortisol tests and an IPSS, it was confirmed I had a pit tumor. The brain surgery was done June '02 at HUP and the tumor was only 1 1/2 mm. Such a tiny tumor doing so much damage.

Recovery from the surgery was quick, but the recovery from the Cushing's was not. My cortisol levels went from 49 right before my surgery to 2 right after. The cortisol withdrawal/taper was incredibly painful, especially since pain killers are not part of the regimen. It took until Jan. 2003 for me to be completely off the cortisol. For a few months after the surgery, I could barely eat, and it was hard to breathe through my mouth until the nose splints were out. (They went through my upper lip to get to my pituitary, but still packed my nose after "undeviating" it.)

The great news was that 2 months after the surgery, my color was back to normal, I was off all meds except cortisol and allergy (even my diabetes was gone), the facial puffiness was going down, and I was beginning to lose weight. Of the original 75 pounds I gained, I've lost 45 -- so far and my emotions got back to normal -- normal for me, anyway :-)

At this point, I'm still very weak, have been off work for over a year, and have developed hypothyroidism (underactive thyroid). This was diagnosed this January just as I was finally off the cortisol. So I'm currently recuperating from both Cushing's and hypothyroidism. Still seeing my endo and getting bloodwork done every 2 months.

Forgive me for being so long-winded, and thank you so much for this site -- it really helped me to understand Cushing's Disease. While the illness is horrible, it is wonderful to know that I am not alone. CUSHIES ARE COOL !!