CSRF
Members' Letters - Steroid
Medication etc.
Code:
724 Date: January, 1998 Steroid Medication
A prolonged use of a steroid cream caused a severe case of Cushing's
syndrome. My appearance changed hideously. I became hump-backed with
a bloated face and belly. I developed a leak in the valve to my heart.
As skin eruptions from cysts and ingrown hairs deformed me, I hid
from the stares of people and the "monster" on the mirror.
My head lost hair and my face grew it! I was home for almost four
years because chronic fatigue robbed me of my strength and depression
stole my spirit.
What happened to me is happening to others nationwide, due various
steroid prescriptions. Many physicians and pharmacists fail to inform
consumers about steroids in their medications. Manufacturers do not
label their products as containing steroids. Many doctors do not follow
manufacturers' recommendations for testing and usage. Steroids can
work wonders if prescribed and used correctly, but incompetence can
prove fatal.
Problems related to steroid prescriptions are devastating and can
be prevented just by informing and educating the public. People are
becoming addicted and sick from different kinds of steroids-and they
don't even know it.
Locally, I provide the only information network for those who suffer
from prescription steroid-induced medical conditions. Steroid-induced
conditions are difficult to recognize-even for physicians.
My story was published in the Las Vegas Sun and was aired on our local
NBC news affiliate. My case changed the labeling of Lotrisone cream
at Smith's Pharmacies across the U.S.
My best medicine is helping others with steroid-induced medical problems
and working for federal legislation of the labeling of steroids.
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Undiagnosed
Code: 818
Date: December, 1998 Undiagnosed
I am 44 years old, and have been suffering from what many doctors
initially say is "classic Cushing's" for about 15 years.
My symptoms keep getting worse, and are as follows: weight gain
with trunkal obesity (normal arms, legs and buttocks), very red
round "moon" face, a pronounced buffalo hump, adult onset
diabetes, peripheral neuropathy in both feet and now progressing
into my hands, hypertension, hyperlipidemia, bulging eyes, glaucoma,
fatigue, muscle weakness, severe mood swings, a kidney cyst, low
frustration level, memory reduction, depression and arthritis.
I have been through many medical tests with general medical practitioners
and endocrinologists over the past 15 or so years. Most say I have
the classic appearance and symptoms of a patient with Cushing's
syndrome, but upon receiving the results of MRI's, CT scans, blood
and urine tests, the doctors report to me that I do not have Cushing;'s
and that they cannot give me an answer to what is happening to me.
One endocrinologist reported to me that he believes I have cycling
Cushing's, but that he could not be sure. The only abnormalities
noted in the many tests that I have undergone have been elevated
cortisol in one test (about 15 years ago), and an atrophy around
the pituitary gland. I have been told that the atrophy is nothing
to worry about and is not causing my many symptoms.
I would greatly appreciate hearing from any others who have had
problems getting a diagnosis, and any suggestions that anyone can
offer on what to do next. These conditions are getting harder to
live with every day. I feel that I am on my own to solve the mysteries
of my health since the medical professionals have been unable to
help me so far. My current doctor will be ordering another CT scan
of the adrenal glands, and if that shows no concrete problems, he
is giving up the quest for answers. Thanks in advance for your help.
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Code:
1070
Date: Summer, 2001 Undiagnosed
I am currently 37 years old. I think my Cushing's probably started
while in High School. My menses started at age 10 and were never
regular, and I was given medication to correct it. I had the dark
purple stria by age 15 and the moon face by the time I graduated.
I met and married my husband in 1986 at age 22. Within a year we
began trying to conceive. This never happened despite medications,
fertility experts, etc.
By June of 1993, I was feeling horrible, and had vaginal bleeding
which continued for eleven months. I had a D & C and laparoscopic
exploration, but found nothing. My GYN suggested an endocrinologist,
but my primary care doctor said all I needed was to loose some weight.
I have always been heavy, but experienced a weight gain of 75 pounds
within a year. I was on a strict diet but my doctor yelled at me
for not having any will power.
In addition to the bleeding, I had facial hair and hair on my arms
and legs that turned from baby blonde to dark and coarse. My GYN
ordered a CAT scan of the pelvis and abdomen. They found tumors
on both adrenal glands. My primary care STILL suggested it was nothing
and told me to get a new hairdo "since that always makes a
woman fell better."
In April of 1994, I had enough and made an appointment with an endocrinologist
that a friend had recommended. Within 20 minutes, Dr. Eugenia Pavlow
told me she was 99% certain that I had Cushing's. Blood tests came
back positive and she started a regimen of medications that have
helped. I am working with a nutritionist and a Chiropractor. My
cortisol levels remain high, nearly double the normal reading. My
Mom passed away in 1996. I took care of her during the last three
months of her life. Shortly after her death, my Dad had an accident.
After 12 surgeries in four years to save his leg, it had to be amputated.
He now lives with me and my husband, who also is not well.
I work 55-60 hours a week as the Coordinator of Operations for a
busy chiropractic practice. Dr. Pavlov passed away unexpectedly
three years ago. I have yet to find another endocrinologist in my
area that even knows what Cushing's is. I would like any information
possible from anyone in my area.
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Pituitary
Tumor
Adrenal Tumor
Bilateral Adrenal Hyperplasia
Ectopic
Under 18 at Diagnosis
Male Members
Steroid Medications and Undiagnosed
Cyclic
Cushing's
In Memory of...
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