The Cushie Files: How I Figured it Out

I look like her...  This is happening to me.

That was my first reaction upon finding this image through a simple google for "puffy face".   I could see my own ballet frame transforming before my eyes, and this photo might as well have been me.  By the Lord's grace, finding this photo may have saved my life.

For several months I had been struggling with a series of strange changes in my body.  My face was rounding, I had a double chin and hump  on my back.  My body was growing hairy, stomach enlarging, and though a two year old Aviel had weaned, I was still not have a regular cycle.

I clicked on the image and was able to check off more than few symptoms - enough to have me worried. 

Several months later, while visiting North Carolina in preparation for a family reunion trip to Disney World, I asked a doctor for his opinion.

"You are still really small, so I don't think you have Cushings.  And its really rare."  he said.

I was small, weighing 117 lbs, however, this was a massive weight gain for my ordinarily 105 lb, 5'2" frame.  Rapid weight gain is the most predominant symptom, with many patients reaching nearly 200 lbs before they receive and accurate diagnoses.  Though I was gaining weight,  at 30 years old, it was not nearly enough to worry. 

Then I showed him the photo of this still slender woman.  I pulled up my hair, turned to the side, revealing a similar profile,  and said, "What do you think?"

"Hmm..  I can see why you're concerned.  We'll do a test for your piece of mind."

Surely enough, my first blood test indicated high levels of coritsol, a tell-tale sign of Cushing's Disease.  The doctor asked if my lifestyle might be causing enough stress for my hormones to spike.  Having just gone through a war,  it could have been a likely cause, but he still advised me to complete further tests when I got home. 
After I returned to Israel, I took my labs to my family doctor.  Just looking at me, she had the same initial response as the first doctor, but I had enough symptoms present, and charts showing high cortisol, that she believed it was best to move forward with more tests.  After seven months of being a human pin cushion,  we knew or sure that I had ACTH Dependent Cushing's Disease, originating from a tumor on my pituitary gland. 

Seeing a new doctor at my last endocrinology appointment, he asked me how I knew something was wrong.  Cushing's Disease is rare and as my doctor said, "not usually considered by doctors for some reason."   You see, Cushing's disease is rare, but perhaps not as rare as it should be.  In America, only about 25 new cases are diagnosed  each year.  My regular endocrinologist, who was out for maternity leave on this visit, shared that she sees 5 new cases a year, in Israel - a nation the size of New Jersey.

"Once a doctor gets the idea and starts the tests, things can move pretty quickly"  He encouraged.  This may be true in Israel, but I know that in America, patients often suffer through the symptoms for 5 years before they get an accurate diagnoses.   He congratulated me for "reading the literature," asking my doctor about my strange symptoms, and even suggesting Cushing's Disease as what was going on. 

As I hear more and more testimonials from other Cushings patients, I see so much of God's grace over my entire story.  Everything from  finding that initial photo, to the speed with which it was diagnosed, and the ease with which my neurosurgeon was able to remove the tumor, all of this was orchestrated by the Lord, without doubt.  

As the word says, we overcome by the blood of the Lamb and the word of our testimony, I pray that my story will help other woman; women with changes in their body that they don't understand; women struggling with infertility.  It may be daunting to consider the possibility of having a brain tumor, but identifying the problem is the first step in finding the solution.  And Cushing's Disease does have solution.

Cushing's Connection

Related Posts:
The Cushie Files:  Upcoming Surgery 



Popular Posts