Hello, I am 34 years old and 20 months into recovering from a transphenoidal adenectomy to treat for Cushing’s disease. The treatment has so far been a success based on regular bloodwork follow-ups and a 24-hr UFC.
I’d like to give a brief recount of my experience in hopes that others who are suffering from Cushing’s will find it helpful.
Throughout my 20s I was a fanatic about going to the gym and staying in shape. When I was 29 I began to have problems with high blood pressure (first symptom). As a health conscious person I tried everything in addition to meds to get it under control. Over the next 18 months my doctor continuously increased my dose and combined different meds, I dieted and tried to exercise even more (but put weight on anyway – second symptom). I was never a good sleeper but now was having terrible insomnia and waking up soaked in sweat.
At one point, I went to a sleep clinic to see if they had any answers (wired & tired as many of you know). Striae started to appear on my inner thighs and quickly moved on to the front of my stomach around my belly button.
Then I developed Tineas Veriscolor, a common fungal infection of the skin, which I later learned was another early warning sign of Cushings. I had many of the common symptoms appear and some of the scarier ones like bouts of tachycardia where my heart rate would reach 140 just sitting on my couch! Walking up the stairs to a subway platform felt like I was running a marathon…my symptoms, in total, included: high blood pressure, weight gain, moon face, clavicular fat, striae on my abdomen and legs, tineas versicolor, insomnia, night sweats, depression, anxiety, fatigue, and my personal favorite - non-existent sex drive.
My internist is very thoughtful and observant and asked the endocrinologist in his practice for the most effective cortisol test – the 24 hour UFC. My first test came back at 1,475 mcg vs. a reference range of 20-60, and we had our answer. We did the dexamethasone suppression test, which indicated it was a pituitary source, but my MRI showed a perfectly healthy looking pituitary gland.
From there I was referred to a well-known neuro-endocrinologist, Dr. Sharon Wardlaw, at Columbia Presbyterian in Manhattan. After reviewing my test results and conducting her own exam, she ordered a petrosal sampling, which showed without a doubt it was my pituitary. The surgeon that performed the transsphenoidal adenectomy, Dr. Jeffrey Bruce, had a lot of experience and after poking around for longer than he expected, he found the adenoma buried inside the gland.
While I was recovering and a little foggy, I remember him telling me it was about the size of a bb pellet.I was back at work in a week – stockbroker – bad idea. At first, I thought the cure was worse than the disease in some ways. I had severe fatigue, constant nausea, recurring sinus infections (I found out a year later that my surgeon left a small bone fragment in my incision site!), and plenty of aches and pains.
After 6-9 months, things started getting back to normal. My blood pressure had returned to normal almost immediately, I had lost weight, and my jaw line came back. When my blood cortisol reached a certain level, around 9 months later, I was able to stop taking hyrodcortisone. This was the first time I didn’t have some kind of drug in my body for years!...but not for long…At this point I began to see a psychiatrist for help with some depression and anxiety. That was a difficult step for me to take since I had always been very confident and outspoken. I have to admit, anti-depressants and sleep-aids have helped get me back on track. I hope to stop taking them by Spring 2011.
That’s my story. I have a few more follow-ups, like an ACTH stimulation test tomorrow to see how my adrenals perform, but I guess follow-ups are something we all have to deal with now!I realize this is a bit of a ramble, but I would be happy to answer any questions you might have about my experience.
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