About 19 years ago, I noticed the “buffalo hump” below my neck/between my shoulders. “I really have to work on my posture,” I thought. “I can’t believe I’ve got a hunched back at age 17!!!” I’d already gone through several periods of uncontrollable weight gain with little success at taking the weight off through diet and exercise. I was accused of overeating, binging, not being active enough, etc. I felt like a failure and a big slob. By 2004, my blood pressure was no good and my thyroid was underactive. Then came the high cholesterol and insulin resistance (pre-diabetes). The hiatal hernia above my stomach. Acid reflux. Polycystic ovarian syndrome. And most recently, non-alcoholic fatty liver disease (albeit mild).
Back in May 2012, after doing my own research, I came up with a possible link to Cushing’s Syndrome – an endocrine disorder where your body overproduces cortisol due to a tumor on one of your endocrine glands. When I suggested it to my primary care doctor and my endocrinologist in Erie, I was told that it is a rare disease and that I was crazy – there’s no way I could possibly have that, and that all my problems were a result of not taking care of myself and from polycystic ovarian syndrome (PCOS). I never agreed with that! First of all, I take very good care of myself through diet and exercise (despite my being overweight). Second of all, my body overproduces DHEA-S – a hormone that is produced by the adrenal glands – NOT the ovaries. Third of all, my body overproduces cortisol – again, adrenal gland related – NOT the ovaries. Fourthly, the pituitary gland – NOT the ovaries – oversees the production of cortisol. (See where I’m going with this?) It’s NOT my ovaries or care regimen that are the problem.
Finally, on March 31, 2014, I went to Cleveland Clinic. I was sick and tired of the doctors around here not producing answers for me. I was up in arms and wondering how I could possibly have so many things wrong with me at such a young age. For the past 4 years I’ve known something wasn’t quite right and have been looking for an answer. The past 2 years have gotten progressively worse for me; I have a notebook page full of symptoms and abnormalities that I’ve been dealing with (including but sure as heck not limited to: severe fatigue, weakness, depression, easy bruising, a “moon face,” severe water retention, cognitive impairment).
The first time I saw my Cleveland endocrinologist, she looked at my previous lab work and immediately suspected Cushing’s Syndrome. (See? Jen’s not so stupid after all…) After many, many tests (blood, salivary, urine, steroidal), she was confident that my pituitary gland that was the culprit. (Just a quick note: Cushing’s Syndrome becomes Cushing’s Disease when the tumor is located on the pituitary gland.)
On Friday, May 23rd, I underwent a test called DEX-CRH. It determines 100% where a possible tumor may be. I was hooked up to an IV, injected with a synthetic version of a steroid (CRH) the body normally produces, and blood was drawn every 15min (for about an hour and a half) to monitor the effects of the steroid, cortisol levels, and ACTH levels. ACTH is the hormone that the pituitary gland produces as a signal to the adrenal glands to produce cortisol. When the tumor takes over, ACTH is produced in excess, making the adrenal glands overproduce cortisol. It is a vicious, never-ending cycle. Cortisol builds up in your body and causes many, many problems (high blood pressure, easy bruising, weight gain, impaired cognitive functioning, and so much more). My results from this DEX-CRH test proved, once and for all, that there was a possible growth on my pituitary gland. The “true” nature of the beast, Cushing’s Disease, was FINALLY established.
The following Friday, May 30th, I was in Willoughby Hills (suburb of Cleveland) for the final test for Cushing’s Disease: a brain MRI. I received the results on Monday, June 1st: a 5x4x3mm tumor is on my pituitary gland (which is approximately 1cm big). The tumor is active (meaning it is what is causing all the overproduction of cortisol and such), but it looks to be benign. It is touching my optic nerve, but it is not compressing it, which is a good thing. The tumor has grown in a downward position, which will make the surgical approach less dangerous to the optic nerve. I will undergo a transsphenoidal surgical procedure on Monday, August 18th in Cleveland. My stay at the hospital will be about 3-4 days, followed by 4-6weeks recovery at home.
Here are a few websites that explain Cushing’s Disease and the surgical procedure a little better, if you’re interested:
http://www.aboutcushings.com/understanding-cushings-disease.jsp
http://www.mayfieldclinic.com/PE-EndoPitSurg.htm#.U5ENWWdOXIW
http://www.youtube.com/watch?v=tJTR4ty0BW4&feature=youtu.be
(This is a cool video! It is the cranial approach to a different type of brain tumor, but the “GPS” technology is the same kind they will use in my surgery, which will be a nasal approach. FYI: if you have a weak stomach, stop the video after “Step 4” as it does show some blood.)
And please bookmark this page – follow My Cushing’s Journey blog!!!
Wild stuff, huh? My endocrinologist told me last week that I was right about suspecting this disease two years ago. What a nice thing to hear instead of, “You’re crazy – there’s no way you could possibly have Cushing’s Disease. It’s too rare.” Yes, it is rare. I am 1 out of 1million people to be diagnosed with it. But obviously it isn’t rare enough that people don’t end up with it! It can take 4-6 years for this disease to fully manifest and be diagnosed. Honestly, I believe I’ve been living with this for much longer than that. Looking back, I can see where it started, and slowly but surely, it has progressed. And over the past two years, it’s progressed in ways that are overwhelming. I would never wish these symptoms/feelings on anybody, but if I could just touch people and let them feel for one minute what I go through everyday…I’ve compared it to the aftermath of a tornado. All that chaos and destruction you see – the hopelessness and helplessness you feel for those people….that’s how I feel inside everyday. It’s a very real thing. All this time people thought I was making things up or making them out to be worse than they really are…..all the people that shamed me for “eating too much” and “not taking care” of myself and “not exercising enough”……to be able to FINALLY hear a doctor tell me that I HAVE been doing right by me – that I’M not doing anything wrong – that it’s NOT my fault……………let’s just say this has been a very surreal and emotional couple of months.
I’m tired out and not myself, but I’m trucking along. I had a very humbling experience yesterday when I met with my neurosurgeon at the Cleveland Clinic. He specializes in pituitary surgery, but also in malignant tumors of the brain. Sitting among those patients, stricken with cancer…..makes you realize how precious life really is. It could be much worse for me. God bless those people.
R12:Twelve 