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Dear Doctors

Dear 4 endocrinologists, 1 neuroendocrinologist, 1 reproductive endocrinologist, 1 cardiologist, 2 primary care physicians, and 2 psychiatrists,

I visited you between 2002 and 2009.  Sometimes, I saw you multiple times asking for help.

In 2002, I saw Dr. Cardiologist. I was 180lbs, which is just "overweight" for my 17 year old 5'8" self.  I had high blood pressure, and at one visit, you repeated it 8 times and it was still elevated.  I was not nervous to see you, I had Cushing's disease.  Less than 1 year after the visit where I was 180lbs and had elevated blood pressure, I saw you again, but was 200 lbs and 18 years old.   My blood pressure was even more elevated, and you repeated it, only once.  You suggested that I exercise and eat better to lower my cholesterol.  3 months later, I saw you for a 3rd time.  I was 230lbs.  Didn't you think something was wrong?  According to me AND my parents, I had no change to my eating habits.

For everyone else, your notes to my PCP basically spell out a Cushing's diagnosis.  I had rapid onset central obesity, significant weight gain, high blood pressure, facial plethora, acne, mood lability despite treatment for depression, insomnia, easy bruising, lower extremity edema, kidney stones, recurrent infections, and menstrual irregularity.  In fact, one note names ALL of these symptoms, and you are an endocrinologist!!  The only thing you wanted me to do was increase my vitamin D intake because my levels were low.  Going back through test results, I had high cortisol 3 times, for 2 different ordering doctors.  Wasn't that your answer?   If I had known better, I would've said something, but at the time, I still didn't know what we were looking for.

I finally found someone to help me, thanks to a gynecologist who knew something was wrong.  My endocrinologist is the smartest person I have ever met.  She diagnosed me 2 weeks after I first saw her for a visit.  Thanks to her, I lived.  I did not die of a heart attack or stroke, even though my body was rapidly falling apart.  I had not one, but 2 brain surgeries to attempt to remove the tumor that almost ALL of you knew was there.  Because my body had been sick for too long, those surgeries didn't work.  Another very smart radiation oncologist told me not to wait for radiation because he feared I would be dead before it could work.  Instead, I had a controversial bilateral adrenalectomy.

Today, no thanks to you, I am a healthier 26 (almost 27) year old, who has lost YEARS of her life to this disease.  I have to carry needles and injections and a bag of medications everywhere I go thanks to you.  I will never be able to get pregnant on my own without a lot of medical intervention, if that even works.  I have lost countless friends and the chance at a medical degree.  I lost other members of my support system to this disease because of doctors like you who ignore the obvious and don't listen to patients. I had a TIA in June last year, most likely because my blood vessels are damaged from years of cortisol exposure.

I spent years thinking no one was ever going to believe or help me, but I only needed one of you to put the pieces together.  Next time you see someone with symptoms like mine, or other symptoms that just don't add up, PLEASE try harder to help them.

-Danielle

Comments

  1. Hi Danielle. My name is Christen. I ran across you blog tonight and I swear some of it is like looking in a mirror. I'm 28 years old right now. I was diagnosed w Cushing's Sept 05. Pituitary surgery in DEC 05.... winter break of my senior year in college. Looking back, I had no idea that I wouldn't even begin to feel decent until around April of 06.... I had Cushing's BAD. but you do what you have to , right?......... anyways, I still struggle w my weight. So far Ive lost 100 pounds and have had the lap band surgery as well. I still would like to lose another 80- 100 but I feel like I drag my body kicking and screaming though every single pound lost! I'm tired. My tests come back with no red flags, no reason to believe anything is amiss.... Just nice to know there are people out there that are years postop and still struggle. This is not the 'success story' I was told from my surgeon. :)

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    Replies
    1. Hi Christen! Thanks for reading and posting! I hope you are doing well now, I think you would really enjoy a book I recently read, called "The Lonely Patient"

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