If it appears that the whole newsletter isn't here, or you want to read the complete articles, read this newsletter online at http://www.cushingsonline.com/newsletters/email/3-26-2008.htm
What's New? March 26, 2008
Site News
Welcome to Cushing's Help and Support Newsletters!
This Week, Thursday March 27 at 7:30PM eastern
Monica (Monicaroni) and Crystal (Vinesqueen), March 27, 2008. The Call-In number is (646) 200-0162.
Crystal and Monica went through every step of their Cushing's journey together--tested together, had surgeries the same days, and have become best friends because of it.
Monica was diagnosed with Cyclical Cushing's. She had pituitary surgery in November 2006. An 8mm encapsulated pituitary tumor was removed.
Since there was no post-op crash, she also had a BLA in December 2006. Both surgeries were in Seattle. She is now free of Cushing's and am on the road to recovery!
Monica is a professional violinist.
From Monica's bio
Crystal had pituitary surgery surgery 11/06 followed by a BLA 12/06. She also had a sinus excavation 2/06 and sinus surgery 5/07. Her last surgery was an internal hernia repair 8/07
Her blog is available at http://vinesqueen.blogspot.com/
Listen to CushingsHelp on internet talk radio
Future Guests:
• StaceyJenn, April 3. StaceyJenn was diagnosed with adrenal insufficiency, hypothyroidism, and a host of other ailments in 2001 (candidiasis, intestinal permeability, 22 latent food allergies).
Once diagnosed, she was on specially formulated hydrocortisone for 7 years as she was allergic to the fillers in the meds. Her doctor stopped practicing and she was transferred to his associate. She switched StaceyJenn to medrol.
After Cushing's symptoms, a new endo started weaning her off the medrol and she had many problems. Read StaceyJenn's bio
• Steve Owens (sowens), April 10. Steve is from Ohio and he was diagnosed with HyperBeta Adrenergic Syndrome in August, 2005. Doctors thought he might have a pheo, now they're checking for ACC cancer.
Steve also has a newspaper article written about him. Read Steve's bio
• Terry (Terry), April 17. Long time pituitary Cushing's survivor. Terry had a pituitary surgery (in LA) in October of 2003 which did not cure her cushings disease. Then, Dec 13th, 2003 she had her BLA in a Wisconsin hospital.
She also had an infection in her sphenoid sinus. It originated at the site of her pituitary surgery from October 2003. She had to be on a lot of antibiotics and narcotic pain relievers.
In Sept 2005 the surgeon removed infection from one area, make another area clear to allow for better drainage, checked her bone and found one area okay but took bone for culture from another area. Terry has had an infection requiring a post-op PICC line.
• Dr. Dori Middleman, Psychophamacologist, Certified Gestalt Psychotherapist and Cushing's Patient, date to be determined. Interviewed by MaryO
DrDori has had both pituitary surgery and two gamma knife radiosurgeries
• Dr. William Ludlam, Neuroendocrinologist, date to be determined.
• YOU???
Achived audio is available through the Podcast page of this site, BlogTalkRadio, the CushingsHelp Podcast or through iTunes Podcasts
Subscribe to the CushingsHelp podcasts on iTunes
Think of our podcast as a radio show on Cushing's. The show consists of many "episodes". You can listen on your computer, or your iPods, completely free of charge.
Subscribe to the CushingsHelp podcasts on TiVo
It's time to get ready for Cushing's Awareness Day again
Media: Cushing's Awareness Day, April 8, 2008
Also on the Website...
Your donations help this site keep running. Thank you!
Many thanks to these 97 donors. Please join them!
Weekly Chat Reminders, Voice (Call-In) Chat Reminders, new podcasts, Meeting / Webcast Notifications and Occasional Newsletters are back! Sign up to take advantage of this returning feature. Register here
Read this Newsletter online
Cushing's Help and Support Printable Brochure
Cushing's brochures that are sent out with the Cushing's Awareness Wristbands. Print them on special tri-fold brochure paper for the best effect. Newest version includes the new podcasts, voice chats and has a Columbus, OH picture.
Newest Helpful Hint:
MelissaTX's tips for new patients: How to steady your feet and get diagnosed quickly
Latest Testimonials:
My key was the very best minimally invasive surgeon I could find on the planet. I found him, with much help from selfless and thorough Cushing's advice source MaryO'Connor's Cushings-help.com. Mary is my true hero in the lifelong Cushing's story of my time. Without her dedication to Cushing's and helping other people find help, I would be somewhere today lost & still fluttering in the wind, undiagnosed or probably dead.
Mary runs her site out of pocket, so please stop over and donate to her cause, I use Paypal. :) She is truly and directly saving lives with her work, and at the very least should not have to be worried about money to keep the place going. She also has health issues of her own that I would prefer to see magically disappear and fix, for Mary deserves a long healthy happy life with Tom. :)
Upcoming Chats
Next Scheduled Text Chat
Wednesday, March 26, 9PM Eastern. The Chatroom is open 24/7
Next VOICE Chat, March 27, 7:30 PM Eastern MaryO hosts Monica and Crystal's interview. The Call-In number is (646) 200-0162. Upcoming guests include Monica and Crystal, StaceyJenn, Steve Owens, Dr. Dori Middleman, and Dr. William Ludlam
Archived VOICE Chats / Internet Talk Radio
Listen live to archived interviews with MaryO, JenS, Karen, Robin, Alicia, Jayne, Judy and Jess. Achived audio is available through the Podcast page of this site, BlogTalkRadio, the CushingsHelp Podcast or through iTunes Podcasts
Upcoming Meetings:
• 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.
• Patient Support Group Santa Monica, CA, Wednesday May 21, 2008 More info here.
• Endo 08 (San Francisco, CA) June 15-18, 2008. More info here.
• Patient Support Group Santa Monica, CA, Wednesday July 16, 2008 More info here.
• Patient Support Group Santa Monica, CA, Wednesday September 17, 2008 More info here.
• Patient Support Group Santa Monica, CA, Wednesday November 19, 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: 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
New Bio March 25
Rachelle (shel) is from Calgary, Canada. She had pituitary surgery in February 2003. Following that, she learned that the tumor had hemorrhaged so she had radiation in 2004 followed by a BLA in 2006. She now has Nelson's Syndrome.
New Bio March 24
Pamela (P Counts) is from Havre de Grace, Maryland. She had a pituitary adenoma removed on March 6, 2008.
New Bio March 22
Lisa is from Oklahoma City, Oklahoma. She had her right adrenal gland removed May 23, 2007. She developed colitis post-op. Lisa updated her bio March, 2008 after a checkup with her endo.
New Bio March 22
Kelli is from Auburn, Washington. She originally read an article in a Weight Watchers Magazine and that started the diagnostic process. She met Karen (rooon55) at Dr Ludlam's office.
New Bio March 20
StaceyJenn (StaceyJenn) is from New Jersey. She has steroid-induced (Iatrogenic) Cushing's. She has taken steroids for allergies. She has also been diagnosed with adrenal insufficiency, hypothyroidism, candidiasis, intestinal permeability and 22 latent food allergies.
New Bio March 18
Katie (kvb927) is from Philadelphia, Pennsylvania. She is not diagnosed with Cushing's yet but has a number of diagnoses - panic disorder, major depression, bipolar disorder, hypothalamic amenorrhea, female hypogonadism, and pituitary adenoma. Her abnormal hormones are low FSH, LH, estradiol, insulin, and free T4. Imaging found a 2 mm. adenoma on her right pituitary and an 11 mm. pineal cyst.
New Bio March 18
Linda (lsfranz2001) is from Arlington, Texas. She has steroid-induced Cushing's from epidural injections.
New Bio March 18
Jamie (synthia) is from Buckfield, Maine. She has many Cushing's symptoms and has been diagnosed with PCOS because of high androgen levels.
New Bio March 16
Barbara is from California. She is going to have her left adrenal gland removed soon but is afraid of the surgery.
New Bio March 16
Carmie (Carmmaui) is from Murphys, California. She has not yet been diagnosed with Cushing's but has many symptoms and was considering bariatric surgery.
New Bio March 16
mm (Feb2008) is from mid-state, North Carolina. She had a 5mm tumor removed at Univ of Va in February 2008. The tumor was resting against the carotid artery.
New Bio March 16
Dawn (chazah) is from Kempton Park, South Africa. She has not been diagnosed with Cushing's but has a great many symptoms. She has been diagnosed with diabetes, Spondylitis, Hypothyroidism, Hashimoto's Thyroiditis and possible lupus.
New Bio March 16
Gail (Gail) is from Swansea, South Wales, Great Britain. She is not yet diagnosed with Cushing's but has many symptoms.
New Bio March 16
Colette (micheline) is from Winnipeg, Canada. She is not diagnosed with Cushing's but has had symptoms of MSL or Madelung's Disease for over 25 years.
New Bio March 15
Lisa is from Oklahoma City, Oklahoma. She had her right adrenal gland removed May 23, 2007. She developed colitis post-op.
New Bio March 13
Chris (Chris) is from Clairton, Pennsylvania. She is not yet diagnosed but she is testing for Cushing's.
New Bio March 10
Lisa is from Fredericksburg, Virginia. She has a right adrenal tumor and was about to have surgery when her endo canceled her surgery. Her surgery is now scheduled for April 4, 2008.
New Bio March 10
Lindsay (LynziMarie) is from Salt Lake City, Utah. She is not yet diagnosed with Cushing's but her test results were "high, but within normal range".
New Bio March 10
Michelle (micgonza) is from West Covina, California. She was diagnosed with Cushing's in November of 2007 with a tumor on her right adrenal gland. She had surgery in January 2008.
New Bio March 10
Jevlin (Jevlin) is from Richlands, North Carolina. She has been dealing with Cushing's symptoms for about 9 years. Her pituitary tumor has grown from 4mm to 8.2mmX5mm so she hopes that someone will finally listen.
New Bio March 6
Diana is from Escondido, California. She was diagnosed in September 2006 with a pituitary adenoma. Her surgery was March 21, 2007.
New Bio March 6
Debra is from Weatherford, Texas. She's waiting for test results. Both her PCP and endo think she has Cushing's.
New Bio March 6
Kelly (KellyDeen) is from Burleson, Texas. She was diagnosed with an adrenal adenoma in November, 2007.
Updated Bio February 29
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. Dawn updated her bio February 29, 2008.
Updated Bio February 29
Monica (monicaroni) is currently living in Texas but grew up in Milwaukee. She has Cyclical Cushing's and is taking Ketoconazole. Monica updated her bio September 3, 2007 after pituitary surgery and a BLA and again February 29, 2008 1 year post-op.
Endo News
Endo News March 24:
Cyclical Cushing's Syndrome Due to Bronchial Carcinoid: Early Diagnosis and Prompt Treatment. We hereby describe a patient with cyclical Cushing's syndrome due to ectopic production of adrenocorticotropic hormone (ACTH) by a bronchial carcinoid tumor, accurately diagnosed and treated within a short period of time. In addition we describe for the first time careful assessment of cortisol levels in the postoperative period without hormone replacement demonstrating limited need for steroid replacement...
Endo News March 22:
High prevalence of central adrenal insufficiency in patients with Prader-Willi syndrome Strikingly, 60% of our PWS patients had central adrenal insufficiency. The high percentage of CAI in PWS patients might explain the high rate of sudden death in these patients, particularly during infection-related stress. Based on our data, one should consider treatment with hydrocortisone during acute illness in PWS patients, unless CAI has recently been ruled out with a metyrapone test...
Endo News March 20:
Woman Beats Rare Disease Cushing's disease (CD) is rare in the paediatric age range, but may present a difficult therapeutic challenge. Most paediatric endocrinologists have limited experience managing children or adolescents with CD and thus benefit from close consultation with adult colleagues. Prior to definitive treatment, a diagnostic protocol for investigation is required which broadly follows the model for adult patients. Treatment strategies for CD are described and critically appraised. The management of paediatric CD patients after cure also presents challenges for optimizing growth, bone health, reproduction and body composition from childhood into and during adult life...
Endo News March 20:
40% of patients with CD will have a normal MRI Forty percent of patients with CD will have a normal pituitary magnetic resonance image, whereas conversely there is a 10% prevalence of pituitary incidentalomas in the age range in which CD typically presents (1). It is, therefore, clear that magnetic resonance imaging of the pituitary cannot be relied on and weight should be given to the biochemical evaluation of a given patient...
Endo News March 19:
Three years prospective investigation of anterior pituitary function after traumatic brain injury: a pilot study GH deficiency is the most common pituitary deficit 1 and 3 years after TBI (traumatic brain injury). In patients with mild and moderate TBI, pituitary function improves over time in a considerable number of patients, but it may also worsen rarely over the 3-year period. In patients with severe TBI, ACTH and GH deficiencies at 1st year evaluation persist at 3rd year...
Endo News March 18:
Advances in the Management of Paediatric Cushing's Disease Cushing's disease (CD) is rare in the paediatric age range, but may present a difficult therapeutic challenge. Most paediatric endocrinologists have limited experience managing children or adolescents with CD and thus benefit from close consultation with adult colleagues. Prior to definitive treatment, a diagnostic protocol for investigation is required which broadly follows the model for adult patients. Treatment strategies for CD are described and critically appraised. The management of paediatric CD patients after cure also presents challenges for optimizing growth, bone health, reproduction and body composition from childhood into and during adult life...
Endo News March 13:
The Diagnosis of Cushing's Syndrome: An Endocrine Society Clinical Practice Guideline After excluding exogenous glucocorticoid use, we recommend testing for Cushing's syndrome in (a) patients with multiple and progressive features compatible with the syndrome, particularly those with a high discriminatory value, and (b) patients with adrenal incidentaloma. We recommend initial use of one test with high diagnostic accuracy (urine cortisol, late night salivary cortisol, 1-mg overnight or 2-mg 48-hour dexamethasone suppression test). We recommend that patients with an abnormal result see an endocrinologist and undergo a second test, either one of the above or, in some cases, a serum midnight cortisol or dexamethasone-CRH test. Patients with concordant abnormal results should undergo testing for the cause of Cushing's syndrome. Patients with concordant normal results should not undergo further evaluation. We recommend additional testing in patients with (a) discordant results, (b) normal responses suspected of cyclic hypercortisolism, or (c) initially normal responses who accumulate additional features over time...
Endo News March 13:
DHEAS Levels Linked to Cognitive Function in Women "Possible explanations for our findings include direct actions of DHEA/DHEAS via a putative DHEA receptor, via the androgen receptor, or as neurosteroids and endogenous ligands for sigma-1 receptors," Dr. Davis' team suggests. DHEAS may also be a "marker of overall potential for tissue intracrine androgen and estrogen production in women but not the actual mediator of the effect."
Endo News March 13:
Pituitary Disease / Disorder Affects 1 In 5 = 20% Of The U.S. Population "1 in 5 individuals may have an abnormal growth on their pituitary gland, causing significant health complications. If left undiagnosed and untreated, this can impair normal hormone function resulting in a reduced lifespan," explains Dr. Shereen Ezzat, Professor of Medicine, University of Toronto and member of the Board of Directors of the Pituitary Network Association...
Endo News March 3:
The Role of Sex Steroids in Controlling Pubertal Growth In summary, there is ample evidence to suggest that sex steroids, particularly, oestrogen play a vital role in modulating linear growth through the systemic GH-IGF-I axis, as well as, at the level of the growth plate. Clinical disorders of sex steroid synthesis and action lead to an abnormal pattern of growth. An improved understanding of this effect of sex steroids on growth requires a combination of clinical and basic experimental studies...
Labels: newsletters
Jayne Kerns is a Cushing's patient who had pituitary surgery and a bilateral adrenalectomy before finding the true source of her ectopic Cushing's.
Jayne has seen several potential Cushies and spoken to them. Many have contacted their doctors and turned out to have Cushing's Syndrome. She was also instrumental in setting up the first Cushing's Awareness Day and continues to provide Cushing's Awareness tables at local health fairs.
