Cushing's Info

It's a long story, but here it goes.

At 31, in 2004, my right leg started to swell.  It almost seem to double in size and my dr. told me it was because of my shoes. Well, I mainly wore tennis shoes, and why hadn't my left leg swelled. He gave me a rx for B(something). It helped with the stiffness, but continued to swell. I went to the ER and they told me I had high blood pressure.  WHAT?! I jogged a few times a week, weighed about 140lbs, 5ft 6in. why would i have high b.p. Then, my menstrual cycle stopped for 8 months. Then, I noticed that my foot was a little sore.  One day, the first stride of a jog, my foot hurt and swelled .  Must've pulled a muscle, right?  After the third month of pain, i went to the podiatrist. My left foot was broke in 3 places and 2 breaks in my right. WHAT? HOW? For the rest of the year, I continued to break my feet, until I had 5 in my left and three in my right. All the while, gaining 60 lbs.mainly in my belly,  which I couldn't lose. I felt like crap. So, I started REALLY riding my bike every morning until I lost 30 lbs, but my back was starting to hurt.  I had broke my lower back, in high school, but never had pain so we left it alone.  Well, due to the position of the breaks, my spine had slid more than half way out of alignment, towards my middle.  During surgery, as my neurosurgeon was placing the screw in my spine, my spine broke. He sent me to an endo, who ran a bunch of test.

Before I go on, I now have High blood pressure,  Osteopenia in my spine(and probably my feet), excessive facial hair, irregular periods, sometimes blurry/double vision, my belly is 43in, my face is quite round, elevated to high white blood count,my resting heart rate is 25 beats faster per minute, sleep for no more than 4hrs( six hours if i take Ambien), another break in my right foot, and have begun to have awful headaches.

Now, my first blood test was High for ACTH. Then, one saliva cortisol was High; one was norm. Overnight dexamethasone test; ACTH was high, it increased but my cortisol was normal. First Urine test: first day Free Cortisol was high. ACTH suppressed but still high and cortisol suppressed to normal. Two days later I had to do another Free Cortisol test because I didint collect the day #2 urine.  First day cortisol was high. ACTH suppressed to just within the limit and cortisol suppressed to below limit.  I probably still had dexamethasone in my system from the first test. I felt HORRIBLE.

My doctor wants to see me again in 4 MONTHS!

O.k. I have had all these abnormal tests, feel like crap(with the exception of energy bursts, mainly at 5-8AM), classic symptoms of Cushing's and he wants me to wait 4 MORE MONTHS!  Today I have given my primary physician my blood tests to see what he thinks. I don't want  to wait that long and then retest all over again.
I guess I just don't understand how I can have 5 out of 6 abnormal test, and my endo be so . . . willing to just believe that It can be false positives, and no big deal.  I mean, why have the number ranges, if it's not urgent when they are high.  And, shouldn't it be important to bring the High values down to within limits NOW.  When someone has high glucose they give them insulin, when they have a vitamin deficiency they give them vitamins.  I have high ACTH and high Cortisol, with all the effects of both and nothing to do for it, but cry.  The waiting is scary.  I'm tired of talking about my aches and pains. My family and friends are sympathetic, but I'm sure they're tired of hearing about my aches and pains. So, I've stopped talking about it. To everyone else, I'm the strong/happy one that is full of energy. I'm glad they don't see me on the many bad days, when my whole oversized body hurts.  Or, how I give up when none of my clothes fit, so I stay at home. And, with these new headaches, everything points to Cushing's.  And as scary as Cushings's has to be, I'd rather know why I feel and look like this. I think I can fake my way through being strong enough to handle what I'll have to do to be fixed of this.  I just want to be well and active again.

I've been reading your blogs and wish there was some way to get dr's to understand our urgency.  We just want to feel good again.

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