Newly Diagnosed with Cushing Syndrome

How are you?  I was very moved by your plea for help.  I was diagnosed with Cushing's Disease in November of 2002.  I had surgery to remove any ACTH producing pituitary adenoma in March of 2003.

I went through hell and back......I had every single symptom.....a walking text-book case before, finally, being told that I have this treacherous illness. 

My life, 10 years leading up to the diagnosis was ....well....it was beyond anything I could ever imagine...the suffering.

waiting for surgery was pure, evil torture.

I tell you what, though, I sure learned the absolute true meaning of patience. Divine patience.  I was literally dying a slow, but sure death with my monstrous symptoms/complications.

Diabetes, Bruising, blood pressure, severe boils, hair loss, sweating, EXTREME muscle weakness, hump, doubled my weight, highly emotional......my resting heart rate....resting was about 140.....it was terrifying.  I looked and felt like a freak.....I really, really mean it.  Cruel, cruel disease.

Fast forward to today.........I am cured.  I feel ten thousand times better.  I never, ever, ever thought that I would feel normal again.  I lived through a nightmare that I didn't think would ever get better.

I had an awesome surgeon and well......long story short.....and 12 years later....life is good......not perfect....but a whole lot healthier and feeling like a person again...not a freak.

This disease can be conquered. Please breathe and know that I am thinking about you.....my thoughts are with all my fellow Cushies out there....nobody will ever understand us...we have to be there for one another.

Sorry to hear all of your problems.  I have Addisons Disease and Hyperaldosteronism.  I am writing because your b/p problems i am almost positive are from a disorder called Hyperaldosteronism.  I went 2 years without diagnosis.  By b/p was in the low to mid 200's......it was very dangerous.  Every movement i mad, every conversation and trips to the store caused immediate increase in my already hi b/p.   However.......after seeing most specialist in Dallas including SW Medical Center no one new what  my problem was as no b/p meds would help.   Well my GP kept researching my problems and finally determined I had Hyperaldosteronism and gave me the correct medication which is Spironolactone, i have to take tis every 6 hours with Clonidine.  It is an unusual dose but the only thing that works for me.  My b/p went down and all is well.  Of course, i still have to deal with my Addisons as well and HA can cause problems regulating potassium and dehydration.  If after taking my medicine for HA i still have hi b/p, i know it is dehydration or low potassium (i take 1080mg potassium  1 x day) and/or something called H2ors a great product for dehydration i but from Amazon.  The h2ors is also used for chemo dehydration.  If i am dehydrated and take this product by b/p goes to normal within 10 or 15 minutes.  Sorry I can't help with the Cushings but a good specialist is important.  Good luck.

Caroline and KarenNY, I'm so glad to be able to read stories that sound so much like mine. I was misdiagnosed with a million different problems before someone actually realized that I was a classic Cushing's patient. 10 YEARS OF HELL. I tried to take my own life multiple times. I lost the support of many friends and family members because of my mental health. I also felt like a total freak. Everything about me was just odd-looking. I had a half inch pituitary tumor removed in August of last year. I spent months trying to get my hydrocortisone dose right. I was throwing up almost everyday at one point and my endocrinologist actually told me over  the phone to tough it out and go to  work because women with morning sickness could do it. Then at my next appointment, she told me that I should  have gone to the hospital and gotten an IV when I couldn't hold my pills down. When my surgeon had told me before my surgery that it was going to get worse before it got better, I had no idea just how much worse it was going to be. 

However, now, a year later, I feel great. Probably not great by "normal" standards, but this is the most "normal" I've ever felt in my life. I've lost 80 pounds and still losing. I'm 36 and I'm wondering, does your skin ever get back to normal or will I have this loose skin forever? It's a small thing really, because I'm so much happier and healthier than I was a year ago. I'm also almost completely off of my psych meds. I was diagnosed with everything from MDD to bipolar/severe OCD and everything in between. I've been on every psych med known to man, heavy doses of them too, and now I'm almost off and feeling good. 

There does not seem to be much awareness, even in the medical community, about our illness. That's terrifying since our lives are in their hands. I wish there was more that I could do to raise awareness, but I don't know how. Have you ever wondered if Cushing's is as rare as they say it is, or is it just misdiagnosed? 

Thank you for sharing and I hope our stories make it to those who feel isolated and hopeless suffering everything we have suffered.