Cushing's Info

In a few days, it will be my 30th birthday.  I should be celebrating.  30 is a good age.  Instead, I feel like sulking.  First, let me give you some history.

I haven't been feeling well for almost five years.  As a child, I was always underweight.  As a teenager, I didn't brake 100lbs until I was 19.  After my first daughter, I was 115lbs and holding for years.  Even after my second daughter, I was right back to 115lbs at 5' 3 ".  About six months after my second child (age 25), I started having night sweats.  The doctors were concerned that I had lymphoma.  I was sent to five different specialist, had more tests than I can remember, cat scans, pet scans and a slue of blood work.  I didn't know that there is an actual disease called cat scratch fever but luckily, I have neither.  I later saw my ob/gyn for a routine annual visit.  I was telling him about my horrible mood swings which is very unlike me.  I thought it was just the stress of having a difficult marriage and two children.  He ran some tests and determined that I have PCOS.  He said it is weird that my weight was normal and that I would probably be obese.  Just what every girl wants to hear, right?   He said that if I began birth control that this should solve the problem.  I went through four different kinds of birth control but had serious issues with each of them.  He referred me to an endocrinologist.  The endocrinologist had nothing to add other than I needed to find a birth control that I could tolerate.  I didn't and just gave up.

For the next two years, I began struggling with my weight so I joined a gym and began running.  I sprained my ankle and it just wouldn't heal so I saw a PCP.  My ankles were swollen and I started having chest pain.  I had three ER visits before I was diagnosed with hypertension (age 28).  The ER doctors thought I was having a panic attack and said that my potassium was low. They said eat bananas and call your doctor.  I was 29, thin and very active, when I began two different blood pressure medication.  Within one year, I have developed the following symptoms :

High blood pressure
Low potassium
Excess hair in unwanted places
Acne
Weight gain of more than 50 pounds.  (I stopped stepping on the scale)
depression
extreme irritability
adema
Buffalo hump on the upper back at base of neck (five years ago)
Insulin resistance
stiffness, pain, muscle weakness
Extreme fatigue
Striae on thighs (within the last two weeks)
Red moon face
Twitching
Dark skin patches
dry thin skin
easily bruising
Recently, my periods have disappeared

I just can't believe that PCOS can cause all of this in one years time.  I had an ultrasound of my ovaries and I do NOT have any cysts.  I DIDN'T have any trouble getting pregnant with my daughters, I did NOT have gestational diabetes, or preclampsia.  I was active, thin, running, at the gym daily, porcelain skin, and happy four years ago.

My primary care physician believes that I have Cushings and she feels it is adrenal.  I agree.  I had some cortisol tests that were high and others that were normal.  I feel like the endocrinologists are passing me off as fat and unkempt.  The first endocrinologist I had seen for a cushings consult, referred by my PCP, said that I am more likely to be struck by lightning than to have cushings.  That was his first statement to me as he walked into the exam room.  The second told me that my problems are because I am fat.  I protested that a year ago, I wasn't fat but he just told me to see a dietician and loose weight, take metformin and see him in six months.  I don't even recognize myself anymore and feel like it is hopeless.  I read your stories and hope that I can be like one of you where suddenly, I find the right doctor and will be treated after such a long road of misery.

~Hopeless

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