And It's About Time There Was Some Support For Cushing's!
IT happened after the birth of my first child, about a year after I stopped breast feeding. I woke up one morning and there were all these hairs on my chin, I plucked them. the next AM they had all grown back plus double that amount, I plucked those, the next morning I had almost a full beard, I shaved that. two weeks later my breasts started to leak. I had no health insurance, my breasts leaked so much that I thought about selling it to the hospital nursery. Every one in my family treated it as normal. my husband at the time treated it as normal. my mom reminded me to make sure I shaved each day. I thought It must just be the way GOD made me. not that I might be sick. Then my periods stopped.
I got sick, I went to a walk-in clinic. DX: High blood pressure. how about my lack of periods? see a gynecologist. At the gyne- everything looked normal accept all that hairiness. the doctor freaked out. not pleasant, total waste of time. No health insurance= no doctor visit.
I moved to RI got pregnant a second time, this time I have state health plan so Woman and Infants clinic puts me in hospital for my blood pressure, baby ok. at least weekly ultrasounds, nothing is wrong with my ovaries. I'm diabetic, I have a beautiful baby boy. No problems, I sat out the entire pregnancy.
The health ins. continues while baby is little. I get assigned a internist to watch my blood pressure. i start medication. I can't lose weight. DR. notices my beard and asks me if my breast leak, I say yes, and yes again. he sends me to an endocrinologist.
The endocrinologist diagnosed me with PCOS and diabetes type 2 and puts me on spironolactone. and glucophage. I take the glucophage and end up in the ER via EMT's I have passed out from low blood sugar. My legs collapse. I have ruptured 3 tendons. my hands cramp up I have severe carpal tunnel. they can't get my sugar under control. I am falling apart. I cry all the time.
these various problems presented themselves over the course of 20 years and now I am on disability. I have to wear braces and can not stand or walk for more than 15 minutes. I have to shave 2x's a day to keep my face clean and am approximately 80 pounds overweight. my endocrinologist left the state recently for a new job at the Joslin Diabetes center in Conn.
His replacement is finally testing me for Cushing's and NOW I have a DX of hypercortisolism. it didn't take long to get either. I wonder why my previous endo. didn't test me for this.? I am doing the formal low dose dex 24 hr. urine test next week. hopefully the labs won't mess it up again. they totally messed up last time and destroyed my urine sample. there is so much more to write but my hands are getting weak and I can only type for so long. bye for now.
