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articles are completely accurate or current. Cushing's Help and
Support takes no responsibility for any of the content. Cushing's: From
http://www.wsoctv.com/health/9629382/detail.html Cushing's syndrome is a condition that leads to excessive levels of
cortisol, a type of hormone, in the blood. It is sometimes called
hypercortisolism. The condition is not very common and affects only 10 to
15 out of every million Americans each year. Most patients are between 20
and 50. It is more common in women than in men. The most common cause of Cushing's syndrome is a benign tumor in the
pituitary gland (a pituitary adenoma). This form of the syndrome is known
as Cushing's disease. The pituitary gland is the master gland of the body.
It is responsible for signaling the production of a number of important
hormones (like thyroid hormone, cortisol and sex hormones). The pituitary
adenoma secretes increased amounts of adrenocorticotropin (ACTH), which
causes another set of glands, the adrenal glands, to release excess levels
of cortisol into the blood. As cortisol levels increase, patients begin to notice a variety of
symptoms. A key sign of the condition is excessive weight gain,
particularly around the midsection of the body, rounded face, and fat
deposits on the back of the neck (this is sometimes referred to a buffalo
hump). The skin may become fragile and thin and develop purplish stretch
marks. Patients bruise easily. Some patients develop bone weakening and
may be prone to fractures. Severe fatigue, muscle weakness, high blood
pressure, diabetes, depression, and a decrease in both sex drive and
fertility may also occur. Women may experience menstrual irregularities
and excessive hair growth on the face, neck, chest, abdomen and thighs. Treating Cushing's Disease Once the cause is found, the first line of treatment is usually
surgery. The procedure is called a transsphenoidal adenomectomy. Doctors
make a tiny incision through the nostril (sometimes they go through the
upper lip) to access the pituitary gland. The tumor is located and
removed. William Ludlam, M.D., Ph.D., Endocrinologist with Oregon Health &
Science University (OHSU), says that once the source of the cortisol
overproduction is removed, levels of the hormone may drop to normal.
However, the body becomes used to the high levels of the hormone. So
patients must take decreasing replacement doses of the hormone until they
reach "normal" production levels. Transsphenoidal adenomectomy is a very delicate procedure and should
only be done by doctors with expertise in the surgery. In experienced
hands, about 80 percent of patients are successfully cured. If the surgery
doesn't completely help, doctors may attempt a second transsphenoidal
adenomectomy in case any tumor tissue was missed during the first surgery.
Some patients require removal of the adrenal gland. Another option is
radiation therapy to the pituitary gland. About 40 to 50 percent of adults
who receive radiation for pituitary adenomas see an improvement in
symptoms. Living with Cushing's Disease Patients with Cushing's disease often have a hard time getting a
diagnosis. The symptoms are often vague and can be associated with other
problems or decreasing activity and older age. Ludlam says most patients
seek help for five years before they receive a correct diagnosis. In Portland, OR, a group of women with Cushing's disease***
get together from time to time. They call these occasions "Cushie
parties." The women all know the struggles with diagnosis and treatment
and have learned to support one another and share their friendships. The
women have developed a website***
to help others around the country. It can be accessed at
http://www.cushings-help.com. The "Cushie party" women have developed a website***
to help others around the country. It can be accessed at
http://www.cushings-help.com. For general information on Cushing's Syndrome: Copyright 2006 by
WSOCTV.com. All rights
reserved. This material may not be published, broadcast, rewritten or
redistributed.
*** Message Board Members.
The person sitting next to Jaimie against the head board is Kristin (lookingforanswers),
Amy (kalimae) is the blonde and the one in the yellow top is Krystine.
***
http://www.cushings-help.com
as well as others in the
"Cushing's Help family", was designed and is maintained entirely by
Mary O'Connor (MaryO). Cushing's: From
http://wfrv.com/health/local_story_214084730.html
(© MMVI, CBS Broadcasting Inc. All Rights Reserved.) Cushing's: From
http://www.49abcnews.com/news/2006/jul/22/ 9:15 p.m. Saturday, July 22, 2006 Cushing’s disease brought four women together for what they fondly refer
to as their “Cushie Party.” “I don’t know about you guys, but my family didn’t even believe me,”
Jaimie Augustine***, Cushing’s patient, said. “You don’t gain 70 pounds in 7
months and have something not be wrong.” Cushing’s disease is caused by a rare tumor in the pituitary gland. The
tumor itself is not the problem, but it causes the body to produce too much
of the hormone cortisol. It’s the excess cortisol that wreaks havoc on the
body. “I started having hair growth on my chin, and on my arms,” Augustine
said. “I got purple stretch marks on my stomach.” It didn’t matter if Augustine ate as little as a thousand calories a day,
she still gained 100 pounds. It took five years before Jaimie’s doctors pieced together her symptoms
and treated her for Cushing’s. “Most centers that deal with this would accept that the first line of
treatment is pituitary surgery, brain surgery,” Dr. William Ludlam,
endocrinologist, said. During surgery, doctors remove the tumor on the pituitary gland. “It’s still actually a difficult surgery, because these tumors are
typically very liquidy, soft tumors and can ooze and go places,” Dr. Ludlam
said. Augustine’s surgery was a success, and she began to lose weight after
doctors removed the tumor. While Augustine said she can’t wait to have her
body back, she admitted Cushing’s gave her a different perspective on life. Dr. Ludlam cautions that pituitary surgery works dramatically for some
patients, but not for all. If you have Cushing’s, or think you have
symptoms, you can find out more
information on the disease, or find support near you.
*** Message Board Members.
The person sitting next to Jaimie against the head board is Kristin (lookingforanswers),
Amy (kalimae) is the blonde and the one in the yellow top is Krystine. Cushing's: From
http://www.oregonlive.com/living/oregonian/ The Oregonian They've spent years, they say, chasing misdiagnoses. "You eat too
much pizza," said some doctors. "It's fibromyalgia," said others.
"Lupus, thyroid disorder, menopause," said still more doctors.
"I tear up just thinking about how complete and validated I felt when
I met them. We're like family now," said Jaimie Augustine***, 22, of San
Diego, sitting recently in a hospital room with Ludlam and two other
Cushing's patients, Karen Nolan*** of Vermont and Lisa Eldridge*** of
Massachusetts. Reaching a hand toward Nolan, Augustine said, "I call her 'Karen, my
Cushy mom.' She understands things that I can't even talk to my own
mother about." Like the nightmare of turning into someone she didn't recognize in
the mirror. Or the strict dieting and strenuous exercise that did
nothing to stop the weight gain. Or the helpless anger at so many
fruitless medical appointments. As director of the OHSU Pituitary Unit, one of the largest
neuroendocrine centers in the country, Ludlam says he's glad to see
Cushing's patients bonding. He is working hard to diagnose and spread
awareness about the rare disease, which is caused by a tumor in the
brain's pituitary gland. Ludlam guides about 30 patients a year through surgery. Because it's
difficult for surgeons to siphon the pituitary tumor -- "it's like a
puddle," he says -- patients sometimes have to go through surgery more
than once. Only 600 patients nationwide are diagnosed each year with the
disease, but doctors like Ludlam suspect that many others go
undiagnosed. Besides wild weight gain, symptoms of Cushing's include rounded,
puffy facial features, increased fat around the neck, fragile and ruddy
skin, unusual hair growth and thinning or balding scalps. They are symptoms that the three friends say they fought for years.
As Augustine's weight rocketed from 120 to 220 after she turned 14,
she went on low-calorie diets and upped her workouts to 11/2 hours a
day. When she continued to expand, she stopped dating and taking part in
social activities. "I was continuing to balloon into a person I no longer recognized,"
she said. "I knew something was seriously wrong, and I could not keep
beating myself up over what I was or wasn't putting in my mouth."
The friends found each other by entering phrases such as
"uncontrollable weight gain" on their computer search engines, they
said. On Cushings-help.com -- a Web site the three describe as "lifesaving"
-- they found one another. As they read each other's stories, waves of
relief washed over them. "I really thought," Augustine said, "that I was
the only one." Many doctors, Ludlam said, don't have the expertise to recognize
Cushing's. "There are two issues. One is that the general practitioner doesn't
see the disease very often and won't think of it when a person has it
right there in front of them," he said. "The other problem is that it's
complex, so a doctor might not give the diagnosis because one piece of
the work-up doesn't fit." One of the most problematic aspects of Cushing's, Ludlam said, is
that it drains away patients' energy even as they try to seek help.
For Nolan, 55, Cushing's came with a weakness and shakiness that made
even a trip up the stairs or a short drive to the store dicey. "The fatigue was odd," she said. "I'd be driving and suddenly have to
open up all the windows because I was afraid I was going to fall
asleep." The onset of Nolan's disease began sometime in 1999, when her weight
shot from 128 to 206 and she lost nearly all her hair. As doctors
guessed everything from menopause to depression, the former office
manager grew ever larger, ever more frightened. "The darkest moment was when one doctor told me I'd better just get
used to being heavy and bald," she said. "I remember driving home and
crying the whole way." Nolan, who had surgery in January, is anticipating the kind of weight
loss experienced by her "Cushing's family." Augustine, whose surgery was
in November 2005, has lost 20 pounds; Eldridge's surgery was in April
2005, and she has lost 50 pounds. As more and more people are diagnosed, the three patients are working
to help spread awareness about Cushing's. And, they say, they hope to be
able to support many other patients who have to go through the same
ordeal. "You can't believe how much it helps to have friends," Augustine
said. "When one of us can't see the light at the end of the tunnel, the
others can help us get through." Kate Taylor: 503-294-5116;
katetaylor@news.oregonian.com
*** Message Board Members Cushing's: From
http://www.1190kex.com/pages/ Steve Owens***
of Ohio visited doctor after doctor who said he could solve his
aches and pains by stepping away from the dinner table. It wasn’t
until he took a flight to Portland that he learned he had Cushing’s. "The doctors say to step away from the table and you just… you
don’t eat because you’re sick," he says. "But you don’t lose weight.
It’s a terrible disease, just very terrible." Dr. Ken Ludlam, a Cushing’s specialist, says the disease is most
commonly found in women. It is a form of Cushing’s syndrome caused by
a tumor on the pituitary gland, found at the base of the brain, that
secretes excess levels of the ACTH hormone. That hormone stimulates
adrenal glands to produce excess cortisol which wreaks havoc on the
body. "In addition to weight gain," Ludlam says, "there’s a whole series
of physical changes; people have marked facial rounding, acne, hair
growth on their face or lose it on their head." Ludlam encourages people who have unexplainable weight gain to ask
their doctor about the disease. He says many patients he’s treated
learned about the disease on the internet and had to convince their
doctors of the possibility. Some patients are sick for five to ten
years before being diagnosed with the illness. "You have to be persistent sometimes, really ask your doctor to
look into it." The disease is so rare, some doctors haven’t even heard
of it. If Cushing’s is ignored, it can develop
into cancer. In its early stages, the disease can be treated through
surgical procedures. Cushing's: From
http://www.presstelegram.com/news/ci_3965664 "I've never seen anyone fight like her," said longtime
friend John Reager of Sunset Beach. "It was truly amazing." Last summer, more than 200 friends and relatives
raised $25,000 in the Hope for Heather Fun Run/Walk at the Belmont Pier. Stevens, a Long Beach triathlete, had been diagnosed
with pancreatic cancer and Cushing's disease, a rare hormonal disorder
that overexposes the body's tissues to cortisol. The money raised helped pay for treatment at the
University Hospital in Basel, Switzerland, which offers an experimental
treatment for pancreatic cancer. The treatment failed, and Stevens died late Tuesday
night at her mother's home, following a four-year battle. She was 38. "She was really eager to live for her son," said her
mother, Jordan Fabish of Long Beach. "She did more than most to try to
make that happen." Stevens had deep roots in Long Beach. She was born at Long Beach Memorial Medical Center, as
were her dad, Bob Smalley, and her 14-year-old son, Connor. She attended
Brethren Christian and Lakewood High. She also studied journalism at Cal
State Long Beach. Stevens' fighting spirit sparked a following among
those who were uplifted by her belief that the cancer could be
conquered. That support helped to build Stevens' confidence. "One of the most amazing things about this process,
for me, has been that I learned that if you reach out a hand, there is
always another there to take (it)," she said last summer. "There will
always be another to grab hold and lift you up." "It was a remarkable collaboration," Fabish added
Wednesday. Stevens' health setbacks began in May 2000, when
symptoms of Cushing's surfaced. The disease was not diagnosed properly, and it
inflated her abdomen and increased swelling throughout her 5-foot-6,
110-pound frame. She put on 30 pounds. In March 2002, Stevens had 75 percent of her pancreas
removed, along with 7 inches of colon, her spleen and a quarter of her
stomach. Nine months later, in January 2003, she underwent
surgery for pancreatic cancer, which was at Stage IV. There was a short period of recovery and during that,
running became an essential therapy for her. "It makes me feel like I'm participating in life," she
said last year. However, in 2005 she learned that her cancer had
spread and the Cushing's disease had returned. Along with her mother, father and son, she is survived
by two sisters, Jill Smalley and Gwendolyn Fabish, and her grandfather,
Frank Smalley. Funeral services are pending. Joe Segura can be reached at joe.segura@presstelegram.com
or at (562) 499-1274. Cushing's and Addison's: From
http://www.pioneerlocal.com/cgi-bin/ppo-story/sports/current/gl/06-22-06-955811.html Berliant leads way to National
Games
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Surgery could cure rare Cushing's disease
A diagnosis to end the despair;
Wellness: Finally learning they have Cushing's
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Rare disease treated at OHSU, Oregon Health and Sciences University is one of a very few research
hospitals worldwide treating Cushing's Disease.
Cushing's
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Cushing's
Athlete Berliant leads way to National
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Comparison
of the Dexamethasone-Suppressed Corticotropin-Releasing Hormone Test and
Low-Dose Dexamethasone Suppression Test in the Diagnosis of Cushing’s
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Height in Patients with Permanent Growth Hormone Deficiency with and without
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Cushing's Syndrome
Aug 2, 2006 7:46 am US/CentralCushing's Disease
Reporting
For Years You're Told To Just Lose Weight.. You Try But You Can't.
In Fact.. You Gain Weight.
The Problem Could Be A Rare And Difficult-To-Diagnose Disease Called
Cushing's.
"Cushie" Party/Portland, OR
"You Don't Gain 70 Pounds In 7 Months And Something Not Be Wrong."
Cushings Disease Has Brought These Four Women Together In What They Fondly
Refer To As Their "Cushie Party."
Jamie Augustine***/Cushing's
Patient
"I Don't Know About You Guys, But My Family Didn't Even Believe Me."
Cushings Is Caused By A Rare Tumor In The Pituitary Gland.
The Tumor Itself Isn't The Problem.. But It Causes The Body To Produce Too
Much Of The Hormone Cortisol.. Which Wreaks Havoc
Jamie Augustine/Cushing's Patient
"And Then I Started Having Hair Growth On My Chin And On My Arms There Was
Excess. And Um I Got Purple Stretch Marks On My Stomach."
It Didn't Matter If Jaimie Ate As Little As A Thousand Calories A Day..
She Still Gained 100 Pounds.
"Nice To See You. Nice To See You."
It Took Five Years Before Jaimie's Doctors Pieced Together Her Symptoms..
And Treated The Disease.
William Ludlam, MD, PhD/Oregon Health & Science Univ.
"Most Centers That Deal With This Would Accept That The First Line Of
Treatment Is Pituitary Surgery, Brain Surgery."
Doctors Remove The Tumor.
William Ludlam, MD, PhD/Oregon Health & Science Univ.
"It's Still Actually A Difficult Surgery Because These Tumors Are
Typically Very Liquidy, Soft Tumors And Can Ooze And Go Places."
Jaimie's Surgery Went Well.. And She's Starting To Lose Weight.
Among Support Groups.. Doctor Ludlam Is Known For Solving Difficult
Cases.. And Cautions.. The Surgery Works Dramatically For Some Patients..
But Not For All.
surgery_could_cure_rare_cushings_disease/
Surgery could cure rare Cushing's disease
This video requires the free
QuickTime 7 plug-in.
index.ssf?/base/living/1152037514171020.xml&coll=7
Wednesday, July 05, 2006
KATE TAYLOR
A diagnosis to end the despair
Wellness: Finally learning they have Cushing's
brings a sense of relief
It was only when they found
Dr. William Ludlam at Oregon Health &
Science University that they were diagnosed with Cushing's disease,
which causes uncontrollable weight gain. And it wasn't until they found
each other that they felt anyone else really understood their
frustration and despair.
*** See
Jaimie's TV interview
newslocal.html?feed=123543&article=492549
Rare disease treated at OHSU
Oregon Health and Sciences University is one of a very few research
hospitals worldwide treating Cushing's Disease.
By Felicia Heaton
Sunday, May 21, 2006
Cushing's Disease is a rare glandular
disorder that causes rapid weight gain.
Felicia
Heaton reports
6/21/2006 10:46 PM
Stevens' fight inspired many
Resident dies of cancer after spirited battle
By Joe Segura, Staff writer
Long Beach Press Telegram
LONG BEACH -- Heather Stevens' fight for life had become a cause adopted
by an army of admirers.
SPECIAL OLYMPICS
BY BILL SKOWRONSKI | STAFF WRITER
bskowronski@pioneerlocal.com
The Special Olympics state competition was made even more special by New Trier graduate Gary Berliant.
Berliant and the rest of the 70 qualifying Illinois Olympians will travel to Ames, Iowa for the first-ever USA National Games. In a stellar performance at last weekend's Illinois Special Olympics on the campus of Illinois State University in Normal, Berliant proved he belongs with the best in country.
Berliant, a 24-year old Wilmette resident, was diagnosed with Cushing's Syndrome and Addison's Disease, though neither could slow him down on the track. His first place 400 and 800-meter walks were the fastest ever recorded at the state competitions, earning him a berth in the National Games July 2-7.
Steve Anderson won a pair of first place awards as well, in the softball throw and the long jump. Joining Anderson with a first place long jump and a first place 50-meter walk was Jim Farraggia. Liz Sprowl and Steve Spector also finished first in the 100-meter walk, as did Tony Bower in the 1500 walk. In the 25-meter assisted walk, David Graver also took first place.
Paul Treitman finished second in the 100 walk, Andrea Harris was second in the 100-meter wheelchair event and Brian Reed took second place in both the 10 and 25-meter assisted walks. In the 100 run, Josh Schwartz finished second, as did Paul Kerman in the 200. Also coming in second was the 4x100 meter relay team of Kevin Kenny, Joe Shirley, Mike Mensching and Anderson.
Adding to the success of the New Trier graduates were third place finishers Danny Dreeben (bocce ball singles), Merrill Kalin and John Stavropoulos (bocce ball doubles) and Myra Berliant and Whitney Kellar (bocce ball doubles). Tom Balzer took third in the softball throw while David Graver was third in the tennis ball throw. Balzer, Farraggia, David Jonaitis and Schwartz also took third place in the 4x100 relay while Sprowl finished fifth in the tennis ball throw.
The USA National
Games July 2-7 will take place on the campus of Iowa State University in
Ames. For more information, visit
www.2006nationalgames.org.
Cushing's Diagnostic Testing:
From http://jcem.endojournals.org/cgi/content/abstract/91/7/2582
Comparison of the Dexamethasone-Suppressed Corticotropin-Releasing Hormone Test and Low-Dose Dexamethasone Suppression Test in the Diagnosis of Cushing’s Syndrome
N. M. Martin, W. S. Dhillo, A. Banerjee, A. Abdulali, C. N. Jayasena, M. Donaldson, J. F. Todd and K. Meeran
Department of Endocrinology, Imperial College, Faculty of Medicine, Hammersmith Hospital, London W12 0NN, United Kingdom
Address all correspondence and requests for reprints to: Dr. K. Meeran, Department of Endocrinology, Imperial College, Faculty of Medicine, Hammersmith Hospital, London W12 0NN, United Kingdom. E-mail: k.meeran@imperial.ac.uk.
Context: The low-dose dexamethasone suppression test (LDDST) is widely used in confirming a diagnosis of Cushing’s syndrome. CRH administration at the end of an LDDST has been reported to improve the diagnostic accuracy of this test.
Objective: Our objective was to assess whether CRH administration after a standard LDDST (LDDST-CRH test) improves diagnostic accuracy in Cushing’s syndrome.
Design, Setting, and Participants: Thirty-six individuals with a clinical suspicion of Cushing’s syndrome each completed a standard LDDST and an LDDST-CRH test at Hammersmith Hospitals NHS Trust, London. The LDDST involved administration of 0.5 mg oral dexamethasone given 6-hourly for 48 h. Serum cortisol was measured 6 h after the last dose of dexamethasone, with a value of 50 nmol/liter or below excluding Cushing’s syndrome. Immediately after this, the LDDST-CRH test commenced with administration of a ninth dose of 0.5 mg dexamethasone. Exactly 2 h later, 100 µg human-sequence CRH was administered. Serum cortisol was measured 15 min after the CRH injection, with a value of less than 38 nmol/liter also excluding Cushing’s syndrome.
Main Outcome Measure: Diagnosis or exclusion of Cushing’s syndrome was the main outcome measure.
Results: Twelve subjects were diagnosed with Cushing’s syndrome (eight Cushing’s disease and four primary adrenal). The sensitivity of the LDDST in diagnosing Cushing’s syndrome was 100%, with a specificity of 88%. In contrast, although the sensitivity of the LDDST-CRH test was also 100%, specificity was reduced at 67%. These results give a positive predictive value of 80% for the LDDST and 60% for the LDDST-CRH test.
Conclusion: This small
study suggests that the addition of CRH to the LDDST does not
improve the diagnostic accuracy of the standard LDDST in
Cushing’s syndrome. Growth Hormone: From
http://jcem.endojournals.org/cgi/content/abstract/91/8/2900
The Journal of Clinical Endocrinology & Metabolism Vol. 91,
No. 8 2900-2905 Mohamad Maghnie, Linda Ambrosini, Marco Cappa, Gabriella Pozzobon,
Lucia Ghizzoni, Maria Grazia Ubertini, Natascia di Iorgi, Carmine Tinelli,
Sabrina Pilia, Giuseppe Chiumello, Renata Lorini and Sandro Loche
Departments of Pediatrics, (M.M., L.A., N.d.I., R.L.), University of
Genova, Instituto di Ricovero e Cura a Carattere Scientifico Giannina
Gaslini, 16147 Genova, Italy; Department of Pediatrics (M.C., M.G.U.),
Bambino Gesù, 00165 Rome, Italy; Department of Pediatrics (G.P., G.C.),
Instituto di Ricovero e Cura a Carattere Scientifico, Fondazione Centro San
Raffaele, Università Vita-Salute, 20132 Milan, Italy; Department of
Pediatrics (L.G.), University of Parma, 43100 Parma, Italy;
Biometry-Scientific Direction (C.T.), Instituto di Ricovero e Cura a
Carattere Scientifico Policlinico San Matteo, 27100 Pavia, Italy; and
Ospedale Regionale per le Microcitemie (S.P., S.L.), 09121 Cagliari, Italy
Address all correspondence and requests for reprints to:
Mohamad Maghnie, M.D., Ph.D., Associate Professor of Pediatrics, Department
of Pediatrics, Instituto di Ricovero e Cura a Carattere Scientifico, G.
Gaslini, University of Genova, Largo Gerolamo Gaslini, 5, 16147 Genova,
Italy. E-mail:
mohamadmaghnie@ospedale-gaslini.ge.it.
Context: It has been reported that patients with multiple
pituitary hormone deficiencies (MPHDs) achieve a greater final
height, compared with patients with isolated GH deficiency (IGHD).
However, the outcome of patients with permanent GH deficiency (GHD)
has not yet been reported. Objectives: The objectives of the study were to evaluate and
compare adult height data and the effect of spontaneous or induced
puberty after long-term treatment with GH in young adults with
either permanent IGHD or MPHD. Design and Setting: This was a retrospective multicenter study
conducted in university research hospitals and a tertiary referral
endocrine unit. Patients and Methods: Thirty-nine patients with IGHD (26 males,
13 females) and 49 with MPHD (31 males, 18 females), diagnosed
at a median age of 7.7 and 6.9 yr, respectively, were reevaluated
for GH secretion after adult height achievement (median age
17.6 and 19.8 yr). The diagnosis of permanent GHD was based on
peak GH levels less than 3 µg/liter after an insulin tolerance
test or peak GH levels less than 5 µg/liter after two different
tests. Fifteen subjects had idiopathic GHD and seventy-three had
magnetic resonance imaging evidence of congenital
hypothalamic-pituitary abnormalities. Height SD score
(SDS) was analyzed at diagnosis, the onset of puberty (either
spontaneous or induced), and the time of GH withdrawal.
Results: The subjects with IGHD entered puberty at a median
age of 12.6 yr (females) and 13.4 yr (males). Puberty was induced
at a median age of 13.5 and 14.0 yr, respectively, in males
and females with MPHD. Median height SDS at the beginning of
puberty was similar in the IGHD and MPHD subjects. Total pubertal
height gain was similar between patients with IGHD or MPHD.
Median adult height was also not significantly different between
IGHD and MPHD patients (males, 168.5 vs. 170.3 cm; females,
160.0 vs. 157.3 cm). The adult height SDS of the IGHD subjects
was positively correlated with height at the time of diagnosis
and with total pubertal height gain. Conversely, the adult height
SDS of the MPHD subjects was positively correlated with both
the duration of GH treatment and height SDS at the time of GHD
diagnosis. Conclusions: Adult height in patients with permanent IGHD and
spontaneous puberty is similar to adult height in patients with
MPHD and induced puberty. Pituitary Surgery: From
http://cities.expressindia.com/fullstory.php?newsid=193741
Workshop on endoscopic sinus surgery Ludhiana, July 20, 2006 The workshop has been organised by the ENT Department of DMC. According
to Dr Hemant Chopra, organising chairman, the incidence of sinus has become
common these days due to increase in pollution, allergy and cross-infection.
The Department of ENT has been undertaking all types of endosocopic sinus
surgery for the last 10 years and this academic exercise would teach and
practise the fundamentals of advanced endoscopic sinus surgery procedures.
Organising such workshop helps in upgrading the techniques of sinus surgery,
for the benefit of patients, said Dr Chopra. Around 200 delegates will be attending the workshop. The guest faculty to
enlighten the delegates will include Dr Tulsi Dass from Apollo Hospital,
Chennai, Dr Hetal Patel from KEM Hospital, Mumbai, Dr P.P. Singh from UCMS,
Delhi, and Dr Ashok Gupta from PGI, Chandigarh. Dr Manish Munjal, organising secretary, said the workshop is a virtual
reality training. While hands-on cadaver dissection will be conducted on
Friday, followed by academic session, comprising guest lectures and panel
discussion, live endoscopic surgeries would be performed on Saturday. These
instructive operative sessions by experts will be relayed to the delegates
at Dumra Auditorium, DMC. Dr Kapil Dua, scientific secretary, said the treatment of sinus has been
revolutionised with the developments of endoscopic sinus surgery techniques
which is a major advancement in the field of ENT. It is now used not only to
treat the disease of nose but also of orbit (eye), brain (pituitary) and
skull base. Pituitary Surgery: From
http://jcem.endojournals.org/cgi/content/abstract/91/7/2656 Robert J. Weil, Alexander O. Vortmeyer,
Lynnette K.
Nieman, Hetty L. DeVroom, John Wanebo and
Edward H.
Oldfield Surgical Neurology Branch (R.J.W., A.O.V., H.L.D.,
J.W., E.H.O.), National Institutes of Neurological Disorders and Stroke,
National Institutes of Health, and Reproductive Medicine and Biology
Branch (L.K.N.), National Institute of Child Health and Development,
National Institutes of Health, Bethesda, Maryland 20892-1414
Address all correspondence and requests for reprints
to: Edward H. Oldfield, M.D., Surgical Neurology Branch, National
Institutes of Neurological Disorders and Stroke, National Institutes of
Health, Building 10, Room 5D37, MSC 1414, 9000 Rockville Pike, Bethesda,
Maryland 20892-1414. E-mail:
oldfiele@ninds.nih.gov.
Context: Partial or total removal of the pituitary
cures 60–80% of patients with Cushing’s disease (CD) in whom
an adenoma cannot be identified at surgery. Many patients who
fail complete or partial hypophysectomy are cured by sellar
and parasellar irradiation.
Design/Patients: As part
of a series of prospective studies of CD, we identified 12
patients (34.5 ± 19.9 yr; 11 females; four children) with
tumors located completely within the neurohypophysis among
730 patients undergoing surgery for CD.
Setting: The study was
conducted at a tertiary referral center at a clinical
research hospital. Results: All 12 patients
had clinical and biochemically defined CD. Tumor was visible
at surgery in 11 patients; all 12 tumors were positive for
ACTH by immunohistochemistry. Two tumors were excised at
repeat surgery because of persistent hypercortisolism within
14 d of negative exploration of the adenohypophysis. There
were no long-term complications. At follow-up of 71.9 ± 34.2
months (range, 30–138 months), all patients are in remission
of CD. Adult patients have had significant improvement in
weight and body mass indices, with restoration of normal
menses in all women. In the four pediatric patients, height,
weight, and body mass indices have been restored toward
normal by surgical remission of CD. Hypopituitarism or long-term
neurohypophysial dysfunction has not occurred.
Conclusion: We report a
new subset of patients with CD, ACTH-secreting adenomas that
arise wholly within the posterior lobe of the pituitary
gland. In cases of CD in which an adenoma is not identified
in the adenohypophysis and in patients with persistent hypercortisolism
after complete or partial excision of the anterior lobe, tumor
within the neurohypophysis should be considered; selective
adenomectomy of a neurohypophyseal, ACTH-secreting tumor can
produce long-term remission. PCOS Clinical Trials:
1) Do you have PCOS? Do you have a sister or daughter
who is 8-12 years old?. This study is being conducted in: RU486: From
http://www.newscientist.com/article/
Abortion drug could rapidly treat depression A hormone treatment used to induce abortion
could provide a rapid-acting treatment for depression. The drug, called RU486, was one of two new rapid treatment
strategies, revealed on Sunday at the Federation of European Neuroscience
Societies' annual meeting in Vienna, Austria. Most antidepressants are thought to work by raising levels
of the signalling chemical serotonin, which acts in the brain. But these
drugs can take several weeks to take effect. The new treatments could be
effective within days or even hours. The hormone treatment is based on earlier findings that
stress plays a major part in triggering and prolonging depression. Stress
hormones appear to damage a part of the brain called the hippocampus. The
region is susceptible because it is particularly rich in hormone receptors,
allowing it to regulate ongoing hormone release. In experiments on rats, Paul Lucassen from the University
of Amsterdam in the Netherlands discovered that stress hormones seemed to be
interfering with the birth of new neurons in the region. "The whole turnover
of cells is affected," he reported. As an alternative to existing antidepressants, Lucassen
and his team were keen to find ways to halt the stress response directly.
Using a high dose of RU486, which blocks the stress hormone receptors, they
were able to maintain normal neuron counts in rats. "It points to a rescue
effect on survival of these cells," says Lucassen. The drug is already used for severe psychotic depression,
and is licensed for use to treat several conditions, including Cushing's
disease, and to induce abortion because it also acts on progesterone
receptors. Pro-life activists have long campaigned for its withdrawal, and
its use for routine depression treatment would undoubtedly be controversial. At the same meeting, Nicholas Barden at the Centre
Hospitalier de l'Université Laval in Quebec, Canada, revealed a second
treatment based on his group’s discovery of a gene that makes people
susceptible to depression. He initially identified the faulty version of the gene
P2XR7 in a family from a region of Quebec in which the depression rate is
particularly high. More recently he and other research groups have confirmed
the same gene defect in several European families – some with major
depression and others with bipolar disorder, or manic depression. These conditions are still generally thought of as two
distinct diseases and treated very differently, says Barden. But these
findings suggest they may be closely related and could be treated in the
same way. The gene is expressed in cells of the immune system. In
the nervous system, it appears in cells called glia, some of which have an
immune function. Low levels of the protein produced by the gene seem to be
related to depression and, in common with Lucassen’s findings, the effects
are exacerbated by stress hormones. The development of drugs that raise levels of the gene
product are well underway, he told the meeting: "There’s a good hope in the
near future of more effective and specialised antidepressants," he said.
"Prozac takes three weeks, but when we target the gene directly [in mice] we
see rapid effects within hours."
Cushing's, possible treatment: from
http://www.hindu.com/2006/08/15/stories/2006081513940300.htm Scar-free nasal surgery
Staff Reporter CHENNAI: ENT surgeons are taking a new route to treat
common problems like sinusitis, nasal obstruction, nasal allergy and polyps
— Image-guided Functional Endoscopic Sinus Surgery (FESS). A live surgical
demonstration of the latest FESS technique was the high point at the 10th
international conference on endoscopic sinus surgery organised by the KKR
ENT Hospital and Research Institute on Friday. About 400 ENT surgeons from
all over the country participated in the event. FESS is performed with the aid of nasal endoscopes that
leave no post-operative scarring on the face. FESS techniques are also
extending the boundaries of the ENT speciality to crossover to other
disciplines. The live surgeries included endoscopic dacryocystorhinostomy
(performed usually by ophthalmologists for blockage of the flow of tears),
cerebrospinal fluid leak and removal of pituitary tumours (neurosurgery
domain). The procedures were performed by a team that included Niell
Boustred and Raymond Sacks from Australia, Dharambir Sethi (Singapore) and
Ravi Ramalingam of the KKR Hospital. The workshop also featured the introduction of an
advanced equipment, the Micro Debrider System for accurate clearance and
removal of sinus disease. from
http://www.newswire.ca/en/releases/archive/July2006/18/c7824.html New Feature! Add your
Helpful Hints for Dealing with Cushing's to the website and the
Newsletters.
Copyright © 2006 by The Endocrine Society Adult Height in Patients with Permanent Growth Hormone
Deficiency with and without Multiple Pituitary Hormone Deficiencies
Express News Service
To keep pace with the ongoing changes in the field of rhinology, a
two-day landmark workshop on hands-on cadaver dissection and live endoscopic
surgery will begin at DMC tomorrow.
- Various Cities, CA http://www.centerwatch.com/patient/studies/stu91592.html
- Various Cities, CT http://www.centerwatch.com/patient/studies/stu91594.html
- Various Cities, OH http://www.centerwatch.com/patient/studies/stu91622.html
- Various Cities, WA http://www.centerwatch.com/patient/studies/stu91634.html
2) Concerned About Your Cholesterol?. This study is being conducted in:
- Stamford, CT http://www.centerwatch.com/patient/studies/stu91639.html
3) Do you have PCOS? Do you have a sister or daughter who is 8-12 years
old?.
This study is being conducted in:
- Various Cities, DC http://www.centerwatch.com/patient/studies/stu91596.html
- Various Cities, DE http://www.centerwatch.com/patient/studies/stu91595.html
- Various Cities, MA http://www.centerwatch.com/patient/studies/stu91608.html
- Various Cities, MD http://www.centerwatch.com/patient/studies/stu91607.html
- Various Cities, MI http://www.centerwatch.com/patient/studies/stu91609.html
- Various Cities, NJ http://www.centerwatch.com/patient/studies/stu91617.html
- Various Cities, NY http://www.centerwatch.com/patient/studies/stu91619.html
- Various Cities, OR http://www.centerwatch.com/patient/studies/stu91624.html
- Various Cities, PA http://www.centerwatch.com/patient/studies/stu91625.html
- Various Cities, RI http://www.centerwatch.com/patient/studies/stu91626.html
- Various Cities, VA http://www.centerwatch.com/patient/studies/stu91633.html
- Various Cities, WV http://www.centerwatch.com/patient/studies/stu91635.html
Additional educational resource that may be of interest to you:
Volunteering for a Clinical Trial, a brief educational pamphlet. If you
would like to order this pamphlet click here:
http://www.centerwatch.com/bookstore/pubs_cons_brochureform.html
dn9516-abortion-drug-could-rapidly-treat-depression.html
Cushing's, possible treatment:
PARIS & BRISBANE, CALIF., July 18 /CNW/ - Tercica (Nasdaq:TRCA):
-- Cross licensing agreements for Somatuline(R) Autogel(R) and
Increlex(TM)
-- Ipsen to acquire initial 25% stake in Tercica, with the potential to
increase to up to 40% ownership via convertible notes and warrant
-- Joint product development rights for endocrine pipelines
-- Somatuline(R) Autogel(R) gets marketing approval in Canada; Tercica
expects to launch in early 2007
Ipsen (EURONEXT:IPN) and Tercica (Nasdaq:TRCA) today announced that they
have agreed to a worldwide strategic collaboration in endocrinology. In cross
licensing agreements, Ipsen will grant to Tercica exclusive rights to sell(1)
Somatuline(R) Autogel(R), a leading product in the European acromegaly market,
in the United States and Canada. Tercica will grant to Ipsen exclusive rights
to sell(1) Increlex(TM), a leading product in the United States for the
treatment of short stature associated with severe Primary IGF-1 deficiency
(Primary IGFD), in all regions of the world except the United States, Japan,
Canada, the Middle East and Taiwan(2). The companies will also grant to each
other product development rights and share the costs for improvements to or
new indications for Somatuline(R) Autogel(R) and Increlex(TM). In addition,
the companies have agreed to rights of first negotiation for their respective
endocrine pipelines. This alliance is designed to allow Ipsen and Tercica to
offer global care solutions to patients suffering from growth and other
endocrine disorders. In the context of this partnership, Ipsen will acquire
newly issued shares of Tercica common stock representing a 25% stake in
Tercica (post transaction, on a non-diluted basis), and Tercica will issue
convertible notes and a warrant to Ipsen giving it the opportunity to increase
its shareholding to up to a 40% stake in Tercica (post transaction, on a fully
diluted basis). Both companies believe their collaboration will significantly
enhance their respective competitive positioning and growth prospects.
The key components of the collaboration agreement announced today are:
1- Licensing agreements(3):
-- Ipsen will license from Tercica the rights to develop and market
Increlex(TM) worldwide except for the United States, Japan, Canada, the Middle
East and Taiwan. Ipsen will make an upfront cash payment of EUR 10.0 million
($12.5 million) to Tercica upon the closing of this transaction, and an
additional EUR 15.0 million ($18.8 million) on approval of the Increlex(TM)
Medical Marketing Application in the European Union for the targeted product
label. Once Increlex(TM) is launched in Ipsen's territory, Ipsen will pay
royalties to Tercica on a sliding scale from 15% to 25% of net sales, in
addition to a supply price of 20% of net sales of the product.
-- Tercica will license from Ipsen the rights to develop and market
Somatuline(R) Autogel(R) in the United States and Canada. Tercica will make an
upfront payment of $25.0 million (EUR 20.0 million) to Ipsen upon closing of
this transaction, and an additional payment of EUR 30 million ($37.6 million)
upon U.S. approval of Somatuline(R) Autogel(R) for the targeted product label.
Both of these milestones will be financed through the issuance by Tercica of
convertible notes to Ipsen (see below). Once Somatuline(R) Autogel(R) is
launched in Tercica's territory, Tercica will pay royalties to Ipsen on a
sliding scale from 15% to 25% of net sales, in addition to a supply price of
20% of net sales of the product.
2- Equity investment and convertible notes(3):
At closing:
-- Equity stake: Ipsen will acquire newly issued shares of Tercica
common stock representing a 25% stake (post transaction, on a non-diluted
basis) in Tercica at $6.17 per share, a premium of 30.0% to Tercica's
volume-weighted average closing stock price over the past 15 trading days
ended July 17 for a total cash consideration of $77.3 million (EUR 61.8
million).
-- Convertible note 1: Tercica will issue to Ipsen a convertible note
for a principal amount of $25.0 million (EUR 20 million). The note, which will
mature 5 years from the date of closing carries a coupon of 2.5% and is
convertible into Tercica common stock at a conversion price of $7.41 (EUR
5.92) per share, a premium of 56.0% to Tercica's volume-weighted average
closing stock price over the past 15 trading days ended July 17. This note
will be issued in payment of the upfront licensing payment for Somatuline
Autogel described above.
-- Warrant: Tercica will also issue a warrant to Ipsen, with an exercise
price of $7.41 per share, which represents a premium of 56.0% to Tercica's
volume weighted average closing stock price over the past 15 trading days
ended July 17.
Upon approval of Somatuline(R) Autogel(R) in the United States for the
targeted product label:
-- Convertible note 2: Tercica will issue to Ipsen a convertible note
for a principal amount of EUR 30.0 million ($37.6 million). The note, which
will mature 5 years from the date of closing, carries a coupon of 2.5% and is
convertible into Tercica common stock at a conversion price of EUR 5.92
($7.41) per share. This note will be issued in payment of the second licensing
payment for Somatuline(R) Autogel(R) described above.
-- Convertible note 3: Tercica will issue to Ipsen a convertible note
for a principal amount of $15.0 million (EUR 12.0 million). The note, which
will mature 5 years from the date of closing, carries a coupon of 2.5% and is
convertible into Tercica common stock at a conversion price of $7.41 (EUR
5.92) per share. Ipsen will purchase this note for cash.
In aggregate, excluding the Warrant, Ipsen may pay to Tercica a total
cash amount of up to EUR 98.7 million ($123.6 million) as follows:
-- EUR 73.7 million ($92.3 million) under the equity and
convertible notes net of convertible notes 1 and 2:
-- $77.3 million (EUR 61.8 million) upon closing of the
transaction and;
-- $15.0 million (EUR 12.0 million) upon issuance of the
third convertible note.
-- EUR 25 million ($31.3 million) under the licensing agreement
for Increlex(TM):
-- EUR 10.0 million ($12.5 million) upfront, and
-- EUR 15.0 million ($18.8 million) upon EU approval of
Increlex(TM) for the targeted product label.
Tercica may receive additional proceeds from Ipsen if the warrant is
exercised.
Overall, these instruments will allow Ipsen to increase its stakeholding
in Tercica to up to 40%, on a post transaction and fully diluted basis. Should
Ipsen decide not to convert the notes, they would be repaid in cash at
maturity.
Additional terms of the collaboration include agreements giving Ipsen the
right to appoint two members to Tercica's nine-member board of directors,
replacing two current directors, providing Ipsen with certain protective
provisions, including an approval right related to specified material
transactions and actions by Tercica, and providing for the implementation of a
stockholder rights plan. Closing of the transaction, which is expected to
occur this year, is subject to approval by Tercica's stockholders and the
expiration of the Hart Scott Rodino waiting period, as well as other customary
closing conditions. Tercica stockholders holding an aggregate of 38.4% of
Tercica's outstanding common stock have entered into voting agreements in
which they have agreed to vote their shares of Tercica's common stock in favor
of the proposed transaction and related matters.
3 - Development of Somatuline(R) Autogel(R), Increlex(TM), and
Endocrinology Pipeline Product candidates:
-- Each company has granted to the other the right to pursue development
of new indications and improvements to Somatuline(R) Autogel(R) and
Increlex(TM), either jointly or on its own, with the other party retaining a
right to "opt in" to co-fund later.
-- Each company has granted to the other a right of first negotiation
for products in its endocrine pipeline, and has agreed on a framework for
joint clinical development and subsequent commercialization of endocrine
products on a worldwide basis.
-- Ipsen has several endocrinology compounds in pre-clinical
development, including two products that could enter clinical development as
early as 2007: dopastatin (BIM 23A760), a chimeric molecule directed towards
somatostatin and dopamine receptors, is targeted at the possible treatment of
pituitary adenomas, including those causing acromegaly, Cushing's disease and
hyperprolactinemia as well as non-functional pituitary adenomas. BIM 28131, a
ghrelin agonist, is targeted at restoring normal body composition in wasting
diseases associated with chronic illness.
More information:
http://www.newswire.ca/en/releases/archive/July2006/18/c7824.html
Newest Bios:
To add or edit your bio,
click here
Adrenal Patients
Ann
Ann is 5 months post-op for a left adrenalectomy.
Dayton, OH
Faiza
Faiza was diagnosed with Addison's
seven years ago
London, England
Janet
Janet's pituitary gland is not
working correctly and causing her adrenal glands, thyroid gland
and growth hormone, and many other glands and hormones to
malfunction.
Dallas, TX
Not Yet Diagnosed Patients
Abigail
Abigail saw the
Discovery
Channel program on Cushing's
and has many symptoms. She has been
diagnosed with PCOS, endometriosis and fibromyalgia. She is
seeing a special immunologist about an IgG primary immune
deficiency.
Orlando, Florida
April T
April not yet diagnosed but has many Cushing's
symptoms.
Kentucky
Barb
Barbara just found out she has
Acanthosis Nigricans.
Bernardino, CA
Dianna G
Dianna G saw
Sharmyn's Discovery Health episode on Cushing's. She is not yet diagnosed
but has many symptoms of Cushing's.
Snowflake, AZ
Jessica
Jessica saw
Sharmyn's
story on Discovery Health. She is not yet diagnosed but has many
symptoms of Cushing's.
Michigan
Kate M
Kate M is not yet diagnosed with
Cushing's but she has been diagnosed with PCOS.
South Jersey
Kassandra
Kassandra was diagnosed at age 13 with
type 2 diabetes. She has developed many more symptoms since then but
doctors don't want to test any further.
Iowa
Kerry
Kerry is not yet diagnosed. She is
waiting to see a specialist.
Edmonton, Alberta
Lorraine
Lorraine has not yet been diagnosed
with Cushing's although she has been diagnosed with slow thyroid,
hypoglycemia and PCOS.
Hammond, NY
Monica
Monica has been diagnosed with
Cyclical Cushing's but the type is not yet known. She is on
Ketoconazole for symptoms
Austin, TX
Sandee
Sandee is not yet diagnosed but
after watching the
Discovery
Channel program on Cushing's, she thinks her doctors have been
chasing the wrong problems.
Lusk, Wyoming
Pituitary Patients
Amber
Amber just had her 6 month check-up with Dr. Vance at UVA.
So far, many symptoms have disappeared. She is still weaning off
cortisone.
Albany, Ohio
Archie
Archie was diagnosed with Cushing's in 1991 after being
misdiagnosed for about 8 years. He had transsphenoidal surgery in 1992,
which failed because of bleeding. The surgeon then went through the top of
the head to remove the pituitary gland, which was successful.
Cochrane, Alberta, Canada
Bill
Bill had pituitary surgery January 1996 at Harborview in
Seattle. He now sees
Dr. Cook at OHSU
Ridgefield, WA
Candlelite
Candlelite's 14 year old daughter had
pituitary surgery June 13, 2006.
Wisconsin
Carrie
Carrie's life began with her fighting for her life. She was
born
with group b strep that developed into sepsis. She was airlifted to Duke
hospital within a few hours of her birth.
She has had 11 brain
surgeries due to her hydrocephalus.
Brown Summit, NC
Ellen
Ellen has had symptoms for almost 25 years and has finally
found a 10mm pituitary tumor.
Palm Harbor, FL
Eric
Eric diagnosed after eight years and has had pituitary
surgery.
Houston, TX
Erica
Erica had pituitary surgery at UVa with
Dr. Laws
Roanoke, VA
FerolV
FerolV had pituitary surgery September 30, 2005.
He saw the special on
DISCOVERY Health
Charlotte, NC
Heike
Heike has decided to go through a third transsphenoidal surgery
scheduled for August 22, 2006.
Heike had her second pituitary surgery
June 28, 2006. It was not successful and she is
trying to choose between a
bilateral adrenalectomy or stereotactic radiation.
Her first surgery was in Hamburg, Germany 13 years ago and was
exploratory.
Tallahassee, FL
Hollie
Hollie was diagnosed with pituitary Cushing's in 2004. She
has had two transsphenoidal pituitary surgeries and Gamma Knife radiation
and takes Ketoconazole.
Greensboro, NC
Jaimie
TV interview
(text and video) added
Portland, OR
Janet
Janet's pituitary gland is not
working correctly and causing her adrenal glands, thyroid gland
and growth hormone, and many other glands and hormones to
malfunction.
Dallas, TX
Jennifer
Q
Jennifer Q has pituitary Cushing's. Her pituitary surgery (Sublabial
Transseptal Transsphenoidal Pituitary Surgery) was August 16,
2004. Because of the size of her tumor (12mm macroadenoma), she
also needed to have another procedure done about 2 months after
surgery called Gamma Knife Radiosurgery.
San Diego, CA
Linda C
Linda C had pituitary surgery in
August 2005 at
U.C.S.F.
with Dr Kunwar.
Santa Clara, CA
MaryO
Updated bio after surgery for kidney cancer
Fairfax, VA
Melissa
Melissa was diagnosed
8/11/06
Northern CA/Manteca
Paula
Paula is a Native American, diagnosed May 2006,
pituitary surgery July 6,
currently on 13 medications daily
Union, Missouri
Chastina
Chastina was diagnosed with a
pituitary tumor, and later cyclical Cushing's syndrome in 2001 at
the age of 15. She is now only 20 years old and still not feeling
well.
Parsons, KS
Sarah
Sarah was recently diagnosed with a
0.5 cm microadenoma in her pituitary gland.
Centreville, VA
Shannon
Shannon had her first surgery in
October 2001, her second June 2003 and gamma knife radiation
February 2004.
She still has a small tumo