Upcoming Meetings

Upcoming meetings include:

• Patient lunch (DC Metro area) February 27, 2008 More info here.

• Patient Support Group Santa Monica, CA, Wednesday March 19, 2008 More info here.

• UVa (Charlottesville, VA) Pituitary Days. All Day Friday, April 11, 2008. See the brochure here.
Make plans to go and to meet with others here

• Spring cookout (DC Metro area) late April, early May. More info here.

• Endo 08 (San Francisco, CA) June 15-18, 2008. More info here.

• Endo 2009(Washington, DC) June 10-13, 2009. More info here.

• Endo 2010(San Diego, California) June 19 -22, 2010. More info here.

•Discussions about other upcoming meetings: The Carolinas;
Missouri;
the Los Angeles area;
Southern California Area;
the Midwest/midsouth (Missouri, Oklahoma, Arkansas);
Virginia (Tidewater/Hampton Roads area);
UK meeting in the Spring of 2008?.

Newest and Updated Bios

Add Your Bio

New Bio February 26
Brandy (FLBrandy22) is from North Port, Florida. She was diagnosed with pituitary Cushing's and had two transphenoidal surgeries. The first surgery showed that she had hyperplasia, so she had her whole pituitary removed.

New Bio February 25
Cathy W (cathyw) is from Illinois. She is not yet diagnosed with Cushing's but has been sick for 15 years.

New Bio February 25
Kelsey (Kelsey) is from Highlands Ranch, Colorado. She has had two pituitary surgeries so far and both were unsuccessful. They are contemplating a BLA as the next step. Kelsey has tried meds (ketoconazole and metyropone) with limited results. Kelsey's mom has also posted her own bio.

New Bio February 24
Karen (Karen F.) is from Vancouver, Canada. She was diagnosed with Pituitary Cushing's in December 2007 and had transphenoidal surgery on February 15, 2008.

New Bio February 23
Kim (eureka) is from Eureka, Missouri. She has full blown Cushing's symptoms from steroid use. She has asthma and dealt with pneumonia. She now has APBA (Allergic bronchopulmonary aspergillosis) which is a lung condition treated by more steroids.

New Bio February 23
ReneeMarie is from Florida. She had pituitary Cushing's. She is having complications after her surgery.

New Bio February 23
Diane (worriedmom) is from Highlands Ranch, Colorado. Her daughter Kelsey has had two pituitary surgeries so far and both were unsuccessful. They are contemplating a BLA as the next step. Kelsey has tried meds (ketoconazole and metyropone) with limited results.

New Bio February 22
Donna (DonnaMR) is from Philadelphia, Pennsylvania. Her daughter is not yet diagnosed with Cushing's but has PCOS and insulin resistance. Donna's sister had a pituitary tumor.

Updated Bio February 20
Jacqueline (Jacqueline) is from Toronto, Canada. Her internist thought she had Cushing's right away but changed his mind with a negative dex. test. An endo put her on Meridia for appetite and didn't listen to her other symptoms. Jacqueline updated her bio in February 2008 to let us know that she is going to see Dr. Ted Friedman March 11, 2008.

New Bio February 20
Carolina (Carolina) is from Puerto Varas, Chile. She was treated for bipolar disorder and in a mental institution before her pituitary Cushing's was discovered. She had surgery at UVa February, 2007.

New Bio February 20
Rebecca (Re[Becca]) is from Petaluma, California. She is not yet diagnosed with Cushing's but has many symptoms. She feels pressure in her nasal cavity and is afraid that might be a tumor.

New Bio February 20
Dawn (Dawn) is from Bethlehem, Pennsylvania. While she is not diagnosed with Cushing's yet, she has been diagnosed with high blood pressure, depression, anxiety, panic attacks, migraines, diabetes mellitus, chronic fatigue syndrome, sjogrens symdrome, fibromyalgia, nueropathy, hiatal hernia, fatty liver and had several surgeries.

New Bio February 20
Heather (Heather) is from Wagga Wagga, Australia. She is not yet diagnosed with Cushing's but has many symptoms. She recently took prednisone and things got worse. She is having a CT scan and 24-hour urine.

New Bio February 20
Amy (mindylindy) is from Harrisburg, Pennsylvania. She is not yet diagnosed with Cushing's. Routine bloodwork for her PCOS came back with really high testosterone numbers. She is being scanned for an ovarian or adrenal tumor.

New Bio February 20
MicheleP (MicheleP) is from Wolcott, Indiana. She is not yet diagnosed with Cushing's but she has been sick for about a year. MicheleP may be the subject of a future Live Interview in the Cushings Help Voice Chat / Podcast series. More information as it becomes available.

New Bio February, 16
Bev is from Manchester, United Kingdom. She was diagnosed with adrenal Cushing's in May 2007 and had surgery October 3, 2007. She feels like she is just existing, not living.

New Bio February, 16
Lauren (Lauren) is from Galloway, Ohio. She is not yet diagnosed with Cushing's but has an endo appointment next week. She was diagnosed with bipolar disorder when she was 17.

New Bio February, 15
Mary (KatieSamsMom) is from Columbus, Ohio. She is not yet diagnosed with Cushing's but she has PCOS and adrenal nodule.

Updated Bio February, 15
Renai (Nai) is from Gunnedah, Australia. She has had Cushing's symptoms for many years and she has high prolactin levels. She has been told she has fibromyalgia.

New Bio February, 11
Carol (carryule) is from Canton, Ohio. She is not yet diagnosed with Cushing's but her doctor has found an adrenal mass. She has had a 24-hour urine test so far.

New Bio February, 11
Bobbie (Bobbie) is from Elk Grove, California. She is not yet diagnosed with Cushing's but a doctor at a PCOS seminar at UC Davis suggested that she check out Cushing's disease. She has many Cushing's symptoms.

New Bio February, 9
Becca (Becca) is from Petaluma, California. She is not yet diagnosed with Cushing's but has many symptoms.

New Bio February, 8
Sydni (Sydni) is from the United States. She was just diagnosed with Cushing's Syndrome. She has Reiter's Disease (which is similar to Rheumatoid Arthritis) and has taken Prednisone for many years.

New Bio February, 7
Aimee (Daggersmom) is the daughter of a Cushing's patient, Pat. Pat is due to have a BLA in February, 2008. She has also had two back fusions, two knee replacements, pituitary surgery, gamma knife and chemical treatment.

New Bio February, 7
Crystal is from Spruce Pine, North Carolina. She was originally diagnosed with pseudo Cushing's. After broken bones she got to NIH (the National Institutes of Health) but they couldn't find the tumor, although they believe it's behind a hernia. Surgery is too risky and Crystal is contemplating a BLA.

New Bio February, 7
JoAnn (Flojo3) is from Thunder Bay, Canada. During a kidney ultrasound it was found that JoAnn has an abnormality in her adrenal glands.

New Bio February, 7
Kathryn (Kathryn) is from West Yorkshire, England. She had a pituitary adenoma removed and is on replacement of cortisol, thyroxine and soon to be on growth hormone. She will be having a hip replacement soon.

New Bio February, 5
Melissa (Melissa) is from Franklin, Kentucky. She had a pituitary tumor removed 10 years ago but had symptoms return two years ago.

New Bio February, 5
Lynn (Lynn1201) is from Ohio. She is newly diagnosed with a second adrenal insufficiency and hypothyroidism.

New Bio February, 5
RiAna (bizzysgirl) is from East Alton, Illinois. She thinks she has Cushing's or Pseudo Cushing's. She has diabetes and was told she is bipolar.

New Bio February 4
Gys is from Bloemfontein, South Africa. He was diagnosed with acromegaly in 2007 and had a tumor removed. His hGH and Somatomodine C are still extremely high so he has been hospitalized again for testing and to see if another surgery is needed.

New Bio February 1:
MamaBibbs is from Fort Wayne, Indiana. She had MRIs of her brain, pituitary, adrenal, kidney, pancreas and CT of lungs before a petrossal sinus sampling showed a probably pituitary tumors. She has not yet had surgery.

New Bio February 1:
Sarah (sisnlaw) is from Austria. Her sister in law was diagnosed with Cushing's January 2008. Although she was happy to get the diagnosis, she's scared today and extremely depressed. She returns to the hospital February 11, 2008.

Updated Bio February 28:
FerolV (FerolV) is from Charlotte, NC. She had pituitary surgery September 30, 2005. She saw the special on DISCOVERY Health. She has updated her bio at about 1 1/2 years post-op. She updated her bio again February 26, 2008, 2 1.5 years post op.

New Bio February 28:
Claudia (clauchelo) is originally from Colombia, now living in Germany. She had pituitary tumor surgery in April 2007 and her doctor has told her it's possible she may need another surgery.

New Bio February 28:
Suzanne (Suzanne) is from Lexington, South Carolina. She has an incredible medical history that includes over 50 surgeries since she was 12. She has been diagnosed with Slipped Capital Femoral Epythesis, JRA (Juvenile Rheumatoid Arthritis, Lupus, fibromyalgia and has had two amputations. Through all this she has taken massive doses of steroids. She saw Sharm's episode of Mystery Diagnosis and believes she has Cushing's. Suzanne is testing for Cushing's now.

New Bio February 28:
Bubbles (Bubbles) is from Wichita, Kansas. She has Metabolic syndrome (also known as syndrome x or insulin resistance). Scans have shown both pituitary and adrenal tumors. She is trying to decide if her symptoms are bothersome enough to warrant surgery and following through with a petrosal sinus sampling.

Endo News

Endo News February 26:
Limitations of nocturnal salivary cortisol and urine free cortisol, in the diagnosis of mild Cushing’s syndrome Neither a normal UFC nor a normal NSC excludes mild Cushing's Syndrome. Multiple samples (urine/saliva) and DST are needed to make the diagnosis of mild CS...

Endo News February 26:
Update in Pituitary Disease--Cedars Sinaii Publication (UPDATE WITH FULL ARTICLE), new vistas....in unraveling the challenges of pituitary disease A recent paper, for the first time, proposed the aryl hydrocarbon receptor interacting protein (AIP) gene as predisposing to pituitary adenoma...

Endo News February 26:
Stress hormone impacts memory Cortisol production is controlled by the hypothalamic-pituitary axis (HPA), a hormone-producing system involving the hypothalamus and pituitary gland in the brain and the adrenal gland located near the kidney. People with poorly controlled diabetes often have an overactive HPA axis and excessive cortisol produced by the adrenal gland...

Endo News February 23:
A Neurosurgeons Perspective on Brain Tumors (Video) Neurosurgeons at NOHC are among the region's most experienced in caring for patients with brain tumors and other cranial disorders...

Endo News February 23:
Pituitary Brain Tumors - A Neurosurgeons Perspective (Video) Chicago Institute of Neurosurgery & Neuroresearch - Dr. Gail Rosseau, neurosurgeon at the Neurologic & Orthopedic Hospital of Chicago, provides an educational insight on pituitary tumors - the conditions and treatments for certain cases...

Endo News February 22:
Treatment 'could cut out steroids' Extended use of steroids may result in Cushing's syndrome, a condition marked by rapid weight gain, muscle weakness and skin problems which may lead to high blood pressure, diabetes and heart disease. In some cases, it can shorten life...

Endo News February 22:
Surgical Treatment of Orthopedic Trauma Derived from Harvey Cushing's remarkable personal collection in the Brain Tumor Registry, “The Legacy of Harvey Cushing: Profiles of Patient Care,” by Aaron A. Cohen-Gadol, MD and Dennis D. Spencer, MD, is a stunning historical account of Cushing's surgical cases and research from 1905 to 1930. The book showcases the extraordinary contribution that Cushing made to the advancement of neurological surgery in the twentieth century. The perfectly preserved material, that was housed at the Yale University Library for over 60 years, is the oldest catalog of neurological and neuropathological disease. In particular, the book features extraordinary photographs of patients which were painstakingly digitized from glass slides...

Endo News February 16:
Diagnosis of adult GH deficiency The current guidelines for the diagnosis of adult GHD are mainly based on the statements from the GH Research Society Consensus from Port Stevens in 1997. It is stated that diagnosis of adult GHD must be shown biochemically by provocative tests within the appropriate clinical context. The insulin tolerance test (ITT) was indicated as that of choice and severe GHD defined by a GH peak lower than 3 μg/L...

Endo News February 15:
Warning over illegal skin bleach, illegal skin bleach caused Cushing's Doctors diagnosed her with Cushing's syndrome, which is caused by high levels of steroid hormones such as cortisol in the blood.

It is usually caused by a problem with the adrenal glands, which make the hormones, or with the pituitary gland sending too high a signal to the adrenal glands.

But blood tests on the patient showed very low levels of cortisol and of corticotropin, the signalling hormone in the pituitary gland...

Endo News February 7:
Life's hard times are an important part of who Linda Miller is today. (pituitary tumor) At that time, it was a healing thing for me," said Miller, who suffered through a year of painful symptoms before doctors discovered that she had a tumor on her pituitary gland, and Cushing's disease as a result of that...

Endo News February 5:
The girl, 10, who could die from shock just by watching a scary film ~ Polyglandular Addison's disease/Jenny's Pennies Jennifer is one of just six known sufferers of polyglandular Addison's disease, which causes her to become ill whenever she is surprised or shocked. The condition means she is unable to produce adrenaline in response to alarm or any sudden form of emotional or physical stress...

Endo News February 28:
Simplified Evaluation Tool for Physicians to Personalize Diabetes Treatment Programs This may be particularly helpful for patients who experience inconsistent high and low glucose levels, who experience hypoglycemia unawareness and who generally desire better control, as well as for women with gestational diabetes and pregnant women with diabetes...

Endo News January 22:
Classical Forms of Congenital Adrenal Hyperplasia due to 21-Hydroxylase Deficiency in Adults During childhood, the main aims of the medical treatment of congenital adrenal hyperplasia (CAH) secondary to 21-hydroxylase are to prevent salt loss and virilization and to attain normal stature and normal puberty...

Endo News January 22:
Evaluation of the Pituitary Function with Insulin Tolerance (Hypoglycaemia) Testing: Are There Any Differences Using Insulin Lispro Compared to Regular Insulin? Background/Aim: The insulin tolerance test (ITT) remains the gold standard for evaluating the pituitary function, but has potential risks when hypoglycaemia is induced. There are scarce data using short-acting insulin analogs for ITTs. This pilot study compares the effects of insulin lispro (LPI) with regular insulin (RGI) during an ITT...

Endo News January 16:
RxTrials Institute Drug Pipeline Alert Hypothalamic-pituitary insufficiency may have diverse causes. The aim of this study was to determine the incidence of hypothalamic-pituitary insufficiency in patients with previous infectious diseases of the central nervous system (CNS) of different etiologies and mild-to-moderate clinical course...

Endo News January 16:
The Diagnosis of Polycystic Ovary Syndrome: The Criteria Are Insufficiently Robust for Clinical Research Polycystic ovary syndrome (PCOS) is a common disorder but has considerable phenotypic variability and this has led to controversy over its exact definition and diagnosis. The objective of this study was to review the recently proposed diagnostic criteria to determine whether they were sufficiently robust for clinical and research practise...

Endo News January 12:
Hypothalamic-pituitary insufficiency following infectious diseases of the central nervous system Hypothalamic-pituitary insufficiency may have diverse causes. The aim of this study was to determine the incidence of hypothalamic-pituitary insufficiency in patients with previous infectious diseases of the central nervous system (CNS) of different etiologies and mild-to-moderate clinical course...

Endo News January 10:
Pediatric Pituitary Adenomas A total of 20 patients, including 12 females and 8 males, comprise the study group. Mean age at onset of symptoms was 14.0 years (range, 5–18 years). Four patients had onset of symptoms before the age of 12 years. The majority of patients presented with headaches (n = 12), visual disturbances (n = 12) or, in females, menstrual dysfunction (n = 9/12). Tumor size based on radiographic data was known for 19 tumors; 12 adenomas were greater than 1 cm in greatest dimension, and 7 were less than 1 cm. On follow-up, 2 patients with total gross tumor resections had recurrent adenomas; time to recurrence was 5 months and 17 months, respectively. Nine adenomas stained solely for prolactin, 5 for adrenocorticotropic hormone, and 3 for growth hormone. Two stained for growth hormone and prolactin. One did not stain with hormone antibodies...

Endo News January 9:
“Subclinical Cushing’s syndrome” is not subclinical: improvement after adrenalectomy in 9 patients Overall, 24 patients underwent adrenalectomy for adrenal cortisol hypersecretion, of which 9 were found to have subclinical Cushing's Syndrome. Median serum cortisol was 2.0 ?g/dL (range, 1.1–6.1) after 1-mg overnight dexamethasone suppression testing. Suspicious clinical findings on preoperative examination included skin bruising, unexplained weight gain, proximal muscle weakness, abnormal fat pads, skin thinning, fatigue, and facial plethora. During a median follow-up period of 5 months (range, 1–30 months), all 8 patients with easy bruising noted resolution postoperatively. Fatigue improved in 4 of 5 patients, muscle weakness in 6 of 8 patients, and weight in 7 of 9 patients, with a median body mass index change of –2.0 kg/m2 (range, –7.1 to +0.5 kg/m2)...

Endo News January 9:
Expression of vasopressin receptors in ACTH-independent macronodular bilateral adrenal hyperplasia causing Cushing's syndrome: molecular, immunohistochemical and pharmacological correlates Cortisol secretion in ACTH-independent macronodular adrenal hyperplasia (AIMAH) causing Cushing's syndrome can be controlled by illegitimate receptors. The aim of the present study was to characterize the molecular, immunohistochemical, and pharmacological profiles of vasopressin receptors in cells derived from three patients with AIMAH (H1–H3), in order to evaluate the role of ectopic vasopressin receptors in the physiopathology of hypercortisolism...

Endo News January 8:
C-Reactive Protein and Cushing's Alicia writes: "I came across this article about c-reactive protein. I was interested in it because I have elevated c-reactive protein, and that has thrown the doctors off because they think that that means I have some underlying autoimmune thing going on. Well this article is really interesting..."

Endo News January 6:
Pituitary adenoma ACTH cell adenomas : clinical manifestations of the physical concentric obesity moon face, buffalo back, more blood quality, abdominal skin with large purple leg stripes, like the increase in vellus hair. Severe amenorrhea, the loss of libido, malaise, or even bedridden. Some patients with hypertension, diabetes and so on...

Endo News January 4:
FDA Accepts Samaritan's Cushing's SP-6300 IND and Clears Phase II Study The U.S. Food and Drug Administration (FDA) has completed its regulatory review of Samaritan's IND (Investigational New Drug) application for Cushing's syndrome SP-6300 and declared it has not identified any deficiencies in its IND filing. Accordingly, Samaritan can proceed with its proposed Phase II clinical study of Cushing's syndrome SP-6300's efficacy in patients experiencing Hypercortisolism...

Endo News January 2:
Laparoscopic surgery is safe for large adrenal lesions The purpose of this paper was to assess the safety of laparoscopic adrenalectomy in large adrenal tumours. Because of its many advantages over conventional open surgery, laparoscopic adrenalectomy has become the preferred approach for removal of benign adrenal tumours...