When I began this journey in 1999, I could only find one link for pseudo cushings on Google. I actually gave up finding anyone else like me until today. I was misdiagnosed several times before 2001, when I started seeing Dr. David Schteingart at the University of Michigan (two hours from my home). I was to the point where I was lactating, was growing facial and chest hair, was covered in acne from stem to stern, was passing out, had gained 30 pounds in one month – all around my stomach, was developing a hump on my back, was losing hair, had lost strength, memory, and self-respect, and some days couldn’t even raise my head.
With high cortisol, prolactin, and DHEA I was told I had PCOS even though I have never missed a period in my life. I was then told I had diabetes because I had had a high sugar read when I was pregnant in 1995. I was treated with birth control pills, anti-depressants, and diabetic meds. All of these things made me worse.
Finally, I had an MRI that showed a 2-3 mm mircroadenoma on my pituitary. Two more MRIs confirmed the findings. I was sent off to U of M to their pituitary clinic to find that my pituitary was fine. They sent me to their endocrinology department where I was diagnosed with pseudo cushings. I spent several years traveling to U of M monthly and began taking oral ketoconazole. Yes, that’s right, the same stuff that’s in Nizoral the dandruff shampoo. It took about two years on this stuff for me to develop an allergy. Dr. Steingart told me to choose: relief from cushings or relief from the hives that covered 90 percent of my body. I chose to give up the hives and have not taken ketoconazole since 2004. This is what I have come to realize: I cannot live in a stressful life. If I miss sleep, don’t eat well, or stress out at work, my cortisol sky rockets and I’m back to square one. This makes working almost impossible. My adrenals start off and don’t stop when I’m in a pressure situation. I am like a Southern Belle with the vapors pretty much all of the time. The only difference is: I want to live my life. I want to return to my career and be supermom; my efforts are continually thwarted by my body.
I’m anxious to hear if there are others like me out there in the world and how they have coped and made a go of it.
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Jul 11, 2017 @ 01:02:17
I’m going through the same thing but it seems as though I’m moving opposite of you I started with the hives no one knows y I’m getting them but after a long time on steroids it began to effect my body, I am happy to say I did some research and found a non- steroid shot called xolair, it is used to treat chronic hives and chronic asthma. This is where my Journey began, I am now awaiting my appointment with an endocrinologist. There is no doubt in my mind that I have Cushings syndrome because all the signs are there all the way down to the red puffy face and I can’t keep the fluid off my body despite my efforts. But I’m one of those people that researches and then talks to my doc so far I’ve been right on the money and I been the one to request the xolair. And my doc agreed it was the right step to take but it’s hard to get your insurance to cover it you and your doctor will have to fight to get them to cover it, but if the issue is bad enough they will, Cushings can get really bad and no one can love with the hives u would go insane. Talk to your doc an out the xolair shot and then see if you can resume treatment from there