In November of 2006, at age 26, I was diagnosed with Cushings (a Macroadenoma (yes Macro) in my Pituitary was the cause.) The following January (2007) I underwent Transsphenoidal Neurosurgery at Mass General Hospital in Boston. Over the past three years I have lost over 200 pounds (from 340 pound to less than 130!) (Over the past 4 months I am up 50 pounds and sadly I am showing symptoms of the disease yet again (I am going to see my Neuroendcrinologist next week with my DH.) With macroadenomas it is more likely that the tumor and subsequent disease will reoccur, even with an expert surgeon (which mine was.)
It is estimated that the disease went undiagnosed for almost 15 years. As a child and young teenager I was VERY active, thin, and (for my age at the time) tall! At about 13 or so, I started to gain weight, became fatigued, bruised easily, and grew a significant amount of hair on my face, arms, and legs (which coupled with the usual teenage awkwardness was certainly not a pleasant coming of age!) Over the next 10+ years my weight skyrocketed to over 300 pounds, I stopped growing (height) and was put on every anti-depressant under the sun (generally taking them for a week or two before getting frustrated with their lack of results.) On occasion I was able to lose a few pounds here and there, often gaining more then I lost in the weeks following (which was due mostly to the unhealthy ways in which I lost the weight in the first place.) I was miserable, sad, and horrified by how I felt, acted, and looked.
I cannot begin to count the number of trips to my doctors’ offices, which generally left me feeling horrible and as though I was a failure. Basically they all thought I was lying about how much food I was eating (one even turned the pages of my food journal over, as if to indicate (in a passive aggressive and rude way) that I was leaving out the 17 cookies, double chocolate milkshakes, and snickers bars that I had (not really) eaten that day. Finally in mid ’06, my mother (who had gone to an endocrinologist for her parathyroid) encouraged me to see one as well (as her doctor had indicated to her that endocrine issues may be genetic.) I was lucky to meet with a nice doctor, who after actually LISTENING to me, did a dexamethasone test, 24 urine cortisol test, and later MRI before referring me to the Neuroendocrine center at MGH.
The surgery itself went well. Exactly a week later I was in the hospital again due to a (rare) complication where my sodium levels had plummeted and I began to bleed from my nose (note, if you have this surgery and get a nose bleed PLEASE call 911 immediately!) In the years since I have gone to see the neuroendcrinologist about one every 6 months (by now it is tailoring off to once a year – or would if I wasn’t concerned with my recent onset of possible symptoms again.) I was only on predisone for a little over a month and a half (which is a surprisingly short time) and during which I lost over 40 pounds. The overall maintenance post-op is quite easy. In August of this year I also underwent an abdominoplasty (tummy tuck) (due to all my extra skin on my abdomen I was getting numerous rashes and sores (the last of which landed me in the hospital with an infection!).) A lot for someone just shy of 30!
In wonderful news, I was married in October of 2009 and am eager to begin my new life with my amazing husband! Overall I am feeling so much better (emotionally and physically.)
It seems as though I will always be paranoid (maybe “cautious” is a better term) of getting sick again. But having gone through my ordeal I can only hope to help myself and others in avoiding the years of not knowing. I would love to hear from other folks who have gone through or think they may have Cushings. (Or with any questions regarding the Neurosurgery or the abdominplasty.) Good luck to all and keep smiling!!! ? Jenny Z