May 2, 2007

In This Issue

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 Pictures from Past Meetings:

Pictures from the Pittsburgh, PA Christmas Dinner, December 13, 2006
Click here

Pictures from the April 5-8, 2006 CUSH Cushing's Awareness Day Medical Forum, held in Oklahoma City, OK
Click here

Upcoming Meetings:

• Interested in a UK meeting?  Voice your opinion here

June 2-5, 2007, ENDO 2007, Toronto, Canada, Metro Toronto Center.

• Discussions about Minneapolis in June here

October 6, 2007, Rockford, IL. tentative. More information

Recent Donations:

click for fullsize graph

• In honor of:
   Dr. Jennifer Pecina
Other donors
To make a donation
Donations cover...

News:

Recruiting men with pituitary disease who have testosterone and growth hormone deficiencies.  More Info

Dr. Theodore Friedman from Charles R. Drew University, Division of Endocrinology is currently seeking patients to participate in a research study of pituitary dysfunction. More info.

• The message boards now number over 6,100 participants.

Search Tool. Use this tool to search this site, PubMed, NIH Clinical Trials or any other website. More sites to be added soon.

Guest Transcripts

Newest Site Features:
Read the Current Newsletter

Packing Suggestions For Surgery

Talk to Your Doctor

Corticosteroid Converter.

More info on Adrenal Crisis.

Helpful Hints for dealing with Cushing's Symptoms. The first ones are here.

Add your Helpful Hints

US Cushing's Postage Stamps to promote Cushing's Awareness. See a sample here.

Cushing's Bracelets to promote Cushing's Awareness. Order the bands here.

Reviews of this site

Testing:
Midnight Salivary Cortisol Versus Urinary Free and Midnight Serum Cortisol

Videos and Webcasts:
Video: Transnasal Pituitary Surgery

Webcasts from NIH Pituitary Symposium and Endo 2004.

Videos on several topics of interest to Cushing's Patients:

Jaimie and others from the message boards on TV

Transsphenoidal Pituitary Surgery

Laparoscopic Bilateral Adrenalectomy (BLA)

Transsphenoidal Pituitary Surgery

A Young Woman's Battle with a Hidden Enemy: Cushing's Disease

Top Five Webcast feature updates twice daily and highlights the most popular webcasts viewed each day.

New pages and updates

Doctors and Hospitals:

Helpful Doctors:

New Doctors added to...

US:
Gainesville, FL
Salt Lake City, UT (surgeon and radiologist)
Boston, MA
Wichita, KS
Las Cruces, NM
Riviera Beach, FL
Atlanta, GA
East Setauket, NY
Erie, PA

International:
Hamburg, Germany
Montréal, Canada
Toronto, Ontario, Canada
Lucknow, India
Moorooka, Queensland, Australia
Budapest, Hungary

Doctors updated:
Dr William Ludlam after his move to Seattle, WA from Portland, OR.
Dr. Ted Friedman, book added: The Everything Health Guide to Thyroid Disease: Professional Advice on Getting the Right Diagnosis, Managing Your Symptoms, And Feeling Great (Everything: Health and Fitness)
Dr. Blevins is leaving Vanderbilt Hospital to accept a position as Medical Director of the California Center for Pituitary Disorders at UCSF in California beginning May 1, 2007.
Dr. Maria Fleseriu, Oregon Health and Science University
Dr. Roberto Salvatori, Johns Hopkins, Baltimore, MD
More info here
Dr. James Neifing, Portland, OR

Newest Bios:
There are currently over 770 bios on the website.
See them all by clicking here.

Add or Update your bio here
Newest bios,
listed by type of Cushing's
Lynda
Nicole W
Linda B
Karen
Elisabeth
Yelena
Sommer
Robert
Carmel
Marion
Emma
Deb
Anka
Erica L

Updated Bios:
Newly updated bios, listed by type of Cushing's
Trisha R
Melody C's husband
Heike
Judi
Roxanne
Jen S
Dawnell
Judi
Cathy Tia
MaryO

In Memory
(Alena) Renea Weeks Greenhill

Sue Ann Koziol (SuziQ),
CUSH Founding President

Sue was a very special friend to Cushies world-wide. We will remember her always.

• To light a candle or post a tribute for Sue, please click here

• To read Sue's bio, please click here

• To read more about Sue's journey with cancer, please click here

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There's Good News and Bad News...

The last emailed Newsletter will be May 30, 2007.

Online newsletters will still be available throughout May (and possibly longer) as the Current Newsletter and through the Archives. The Archives will stay on the site permanently.

The Good News is that all the information found in the Newsletters are now in the new RSS Feed (see below) so that your information will be updated as it comes in. No more waiting for the newsletter!

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Links to the News Items are available on the Endo News page, as well.

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href="http://www.cushings-help.com/rss-feeds.htm">More info here


Updated Pages on the Website:

Testimonials http://www.cushings-help.com/testimonials.htm

I cannot tell you how much I love this website, it is the first thing that has made me feel like i'm not totally crazy!!!!

From Erica's bio


News Items:

All News items are now listed in the News Items and Research area of the Message Boards.  Either check there regularly, subscribe to the RSS Feed (info above) or see the headlines at http://www.cushings-help.com/endo_news.htm.

 

Acromegaly

Growing feet could mean tumour

In more than 90 per cent of acromegaly cases the over-production of growth hormone is caused by a benign tumour on the pituitary gland....

This Topic on the Message Boards
Acromegaly Masquerading as Polycystic Ovary Syndrome

Renner, Matthew MD., et al. – This case describes a growth hormone-prolactin, cosecreting pituitary microadenoma that presented with chronic, hyperandrogenic anovulation. A 37-year-old parous patient presented with 1 year of irregular cycles unresponsive to clomiphene citrate and a mildly elevated prolactin. Laboratory evaluation demonstrated hyperprolactinemia with an elevated, age-adjusted, insulin-like growth factor-1 level, and nonsuppressed growth hormone following glucose loading

[more...(Subscription]

This Topic on the Message Boards

Adrenal

Hospital's blunder left me in bed for a year

This is done to check how well a patient's adrenal glands, the part of the body which produces adrenaline, are working. When the test results were returned, ...

This Topic on the Message Boards

Researchers Identify Thousands With Curable High Blood Pressure

Adrenal venous sampling being performed on a patient with primary aldosteronism to distinguish unilateral (surgically correctable) from bilateral forms. ...

This Topic on the Message Boards

Adrenal Gland Volume and Dexamethasone-Suppressed Cortisol Correlate with Total Daily Salivary Cortisol in African-American Women

This Topic on the Message Boards

Cortisol

The Use of Cortisol as an Early Marker for Acute Myocardial Infarction in an Emergency Department Setting

Conclusions

Cortisol levels were found to be high in patients with cardiac chest pain, and significantly elevated in patients diagnosed with MI. This suggests that cortisol may be a valuable predictor of cardiac disease and could potentially serve as a cardiac marker for MI in the emergency setting.

This Topic on the Message Boards

Scientists Unravel Clue in Cortisol Production

When a person's under stress or injured, the adrenal gland releases cortisol to help restore the body's functions to normal. But the hormone's effects are many and varied, lowering the activity of the immune system, helping create memories with short-term exposure, while impairing learning if there's too much for too long. Given the variety of its effects, understanding how cortisol is made is essential to producing medications that can alter its production...

This Topic on the Message Boards

Cortisone

DuoCort AB: DuoCort announces Phase I Data Presentation at the European Congress of Endocrinology

About dual-release hydrocortisone

DuoCort's dual-release 5 mg and 20 mg hydrocortisone tablets for patients with chronic adrenal insufficiency were granted an Orphan Medicinal Product Designation in the European Union in May 2006. DuoCort's objective is to improve today's glucocorticoid replacement therapy with a once-daily tablet which is more convenient than current treatment and capable of improving patient compliance. In addition, by combining rapid release and extended release characteristics, DuoCort's new tablet also delivers a more physiological dose of hydrocortisone, better mimicking the body's natural cortisol serum profile.

This Topic on the Message Boards

Cushing's

Family's despair over rare disease

THE family of a Chippenham man who died of a rare hormonal disorder have told of the despair his illness caused before it was diagnosed....

This Topic on the Message Boards

Improved Quality of Life After Bilateral Laparoscopic Adrenalectomy for Cushing's Disease: A 10-Year Experience.

Conclusions: Laparoscopic bilateral adrenalectomy for symptomatic Cushing's disease is a safe and effective treatment option. The majority of patients experience considerable improvement in their Cushing's disease symptoms, and their quality of life equals that of patients initially cured by transsphenoidal pituitary tumor resection.

This Topic on the Message Boards

Adrenocorticotropic hormone-independent Cushing's syndrome

Summary: A better understanding of molecular mechanisms involved in adrenocortical tumors and hyperplasias may lead to improved diagnostic and prognostic markers and treatment strategies to assist clinicians in the management of corticotropin-independent Cushing's syndrome.

This Topic on the Message Boards

Novartis Expands Late-stage Oncology Pipeline With AS1404, a Novel Agent Shown to Break Down Blood Vessels That Support Tumor Growth

In addition to AS1404, other compounds include RAD001 (multiple tumors) SOM230 (Cushing's disease/refractory carcinoid tumors, acromegaly), LBH589 (chronic ...

This Topic on the Message Boards

Screening Of Cushing's Syndrome In Adult Patients Newly Diagnosed To Have Diabetes Mellitus
 

Conclusions: The results of the present study support the view that unknown CS is not rare among patients with diabetes mellitus. This is the first demonstration that screening for CS may be feasible at the clinical onset of diabetes in an unselected cohort of patients. Therefore, early diagnosis and treatment of CS may give the opportunity to improve the prognosis of diabetes.

Full Text PDF (73 KB) (Subscription)

This Topic on the Message Boards

Diabetes

Screening Of Cushing's Syndrome In Adult Patients Newly Diagnosed To Have Diabetes Mellitus
 

Conclusions: The results of the present study support the view that unknown CS is not rare among patients with diabetes mellitus. This is the first demonstration that screening for CS may be feasible at the clinical onset of diabetes in an unselected cohort of patients. Therefore, early diagnosis and treatment of CS may give the opportunity to improve the prognosis of diabetes.

Full Text PDF (73 KB) (Subscription)

This Topic on the Message Boards

Growth Hormone

Aging: Disease or Business Opportunity?

Medical research has tended to support the view that growth hormone's risks outweigh any potential anti-aging benefits. Under federal law, the substance is illegal to use except for treating childhood growth disorders, AIDS and a rare adult hormone deficiency. But Dr. Klatz and Dr. Goldman have argued that aging is a disease that causes the pituitary gland to gradually produce less growth hormone. Therefore, they say in books, articles and speeches that hormone replacement therapy at low doses is legal and beneficial in “properly diagnosed deficient adults.”

This Topic on the Message Boards

Menopause

Abnormal Uterine Bleeding May Be Best Evaluated by Menopausal Status

Menorrhagia is reported in women with subclinical or overt hypothyroidism and Cushing's syndrome. Uterine causes for abnormal uterine bleeding include ...

This Topic on the Message Boards

PCOS

Acromegaly Masquerading as Polycystic Ovary Syndrome

Renner, Matthew MD., et al. – This case describes a growth hormone-prolactin, cosecreting pituitary microadenoma that presented with chronic, hyperandrogenic anovulation. A 37-year-old parous patient presented with 1 year of irregular cycles unresponsive to clomiphene citrate and a mildly elevated prolactin. Laboratory evaluation demonstrated hyperprolactinemia with an elevated, age-adjusted, insulin-like growth factor-1 level, and nonsuppressed growth hormone following glucose loading

[more...(Subscription]

This Topic on the Message Boards

Pituitary Tumor

Kickboxing Causes Damage To Hormone Producing Area In Brain

Abstract
New research shows for the first time that kickboxing can cause brain damage. Head injuries in kickboxing can cause damage to an area of the brain called the pituitary, resulting in decreased production of hormones, which affect the body's metabolism and response to stress.

This Topic on the Message Boards

ECT in Patients With Intracranial Masses

Journal of Neuropsychiatry (subscription) - USA
No deviation of the pituitary stalk or significant deformity of the diaphragma sellae was noted. She received 10 treatments without complications and with ...

Thyroid

Verbal Memory Retrieval Deficits Associated With Untreated Hypothyroidism

The effects of inadequate thyroid hormone availability to the brain on adult cognitive function are poorly understood. This study assessed the effects of hypothyroidism on cognitive function using a standard neuropsychological battery in 14 patients suffering from untreated hypothyroidism and complaining of subjective cognitive difficulties in comparison with 10 age-matched healthy comparison subjects. Significant differences between groups were limited to verbal memory retrieval as measured by the California Verbal Learning Test (CVLT). On short delay free recall, long delay free recall, and long delay cued recall, significant differences remained between groups despite the limited statistical power of this study. There were no significant results found between groups on attentional or nonverbal tasks. Results suggest that hypothyroid-related memory deficits are not attributable to an attentional deficit but rather to specific retrieval deficits.

(Subscription) Full Text Full Text (PDF)

This Topic on the Message Boards


Add your Helpful Hints for Dealing with Cushing's to the website and the email Newsletters.

Bio and Helpful Doctor information is now available immediately from the New and Updated Cushing's Pages RSS Feed.

Newest Bios:
To add or edit your bio, http://www.cushings-help.com/forms/bio.htm
Adrenal Patients
Anka (Anka) Anka was diagnosed with a left adrenal tumor in January 2007. She will be having laparoscopic surgery in the next few weeks to remove her adrenal gland. Melbourne, Australia
Emma (Emma and Joey) Emma's 10 month old son was born with adrenal Cushing's, diabetes insipidus and may be blind. Australia
Not Yet Diagnosed Patients
Carmel (Chapel) Carmel is not yet diagnosed with Cushing's but recently did a 24-hour UFC which revealed extremely elevated cortisol levels. Melbourne, Australia
Elisabeth (elisabeth) Elisabeth's daughter may have Cushing's disease. She was diagnosed by a doctor that she was seeing while at University. Sarnia, Ontario, Canada
Erica L (Erica L.) Erica is not yet diagnosed with Cushing's but has many symptoms including a high cortisol level. Although her doctor referred her to an endocrinologist, she can't be seen until June 20, 2007 Lawrence, Kansas
Karen Karen is not yet diagnosed with Cushing's but has many symptoms. She has been tested for HIV, Hepatitis (all forms), had a Pet done which showed uptake in thymus and area of cervix, bone marrow biopsy (negative but showed low volume of bone marrow), groin node removed and biopsied (came back benign but reactive). Gate City, Virginia
Linda B (Violetta) Linda B is not yet diagnosed with Cushing's but is seeing Dr. Friedman and learning a lot. Swartz Creek, Michigan
Lynda (LyndaT) Lynda was diagnosed with Lupus 18 months ago but has been re-evaluated by Rheumatologist who has referred her to an endocrinologist for possible Cushing's. Rayleigh, United Kingdom
Marion (Marion) Marion's husband is being tested for Cushing's. She is wondering if the 24-hour UFC is a reliable test for Cushing's. White City, Oregon
MelissaTX (MelissaTX) Melissa is not yet diagnosed with Cushing's but has a great many symptoms and has an endo appointment May 9, 2007. San Antonio, Texas
Sommer (Sommer) Sommer is not yet diagnosed with Cushing's but has done a Dexamethasone Suppression test, because her Cortisol levels were "high". She has a referral to a Cushing's expert. Tacoma, Washington
Yelena Yelena is not yet diagnosed but her doctor suspects Cushing's because she has uncontrolled weight gain, moon face, irregular periods and more. Los Angeles, California
Pituitary Patients
Deb (Debcat) Deb was diagnosed with Cushing's 6 years ago. She has had 2 transphenoidal adrenalectomies, a petrosal sinus sampling, stereoscopic pin point radiation therapy, ketoconazole therapy for 1 year, and STILL has high numbers of cortisol in her urine. Brooklyn, New York
Heike (Heike) Updated bio

Heike has decided to go through another, third, transsphenoidal surgery scheduled for August 22, 2006. Her second pituitary surgery was June 28, 2006. It was not successful and she had to choose between a bilateral adrenalectomy or stereotactic radiation. Her first surgery was in Hamburg, Germany 13 years ago and was exploratory. Heike updated her bio after her third pituitary surgery also done in Hamburg, Germany. She developed Diabetes Insipidus after the last surgery. She has added pictures to her bio.
Tallahassee, Florida
Melody C's husband (mcoleman) Updated bio

Melody's husband was diagnosed with a pituitary tumor in early March, 2006. Melody updated his bio April 29, 2007. He went to see Dr  Ludlam, even though it was out of network and the insurance refused to pay. Peter had pituitary surgery at OHSU on June 22, 2006. His adrenal glands have not woken up and they now believe there is still tumor there.
Bellingham, Washington
Nicole W (Nicki) Nicole's bio will be added later, but she checked off pituitary, diabetes and PCOS on the bio form. Elkhart, Indiana
Robert (Robert) Robert had pituitary surgery 12/15/05 but they were not able to get it all. He has had 33 treatments of radiation in April/May 2006 and is now back on Ketaconozole. Vancouver, Washington
Trisha R (tredan) Trisha had pituitary surgery on April 24th, 2007 at Swedish Medical Center. She updated her bio April 30th and reported that surgery went well and she said she's feeling great. They had to remove a third to a half of the pituitary gland. Wylie, Texas
To add or edit your bio, http://www.cushings-help.com/forms/bio.htm

Newest Helpful Doctors:
Dr. Laurence Kennedy

1600 SW Archer Rd.
Gainesville
Florida

Phone: (352)392-2612
Fax: (352)846-2231
Endocrinologist

My doctor is... an endocrinologist. He is a wonderful, compassionate doctor who has supported me throughout my recovery from Cushings, esp. by answering my emails whenever I had questions. He has seen more than 200 Cushies in his life-time. He works with Dr. Roper, a neurosurgeon.

Gainesville, Florida
Dr. Dieter K. Luedecke
University Hospital Hamburg Eppendorf
Martini Str. 52
Hamburg, Germany

Phone: 011/49/40/42803-0
Fax: 011/49/404/28035982
Chief Neurosurgeon

Dr. Luedecke is also guest professor at Showa-University, Tokyo, Japan.

He is a neurosurgeon who successfully cured me of Cushing's although my tumor was not visible. He has a special technique not used here in the States to my knowledge. He also uses micro instruments that he has made himself. He has taught his technique all over the world. He works at a teaching hospital in Germany.

Hamburg, Germany
To add your helpful doctor, http://www.cushings-help.com/forms/doctor.htm

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Upcoming Conventions, Meetings and Seminars:

Meeting information is now available immediately from the New and Updated Cushing's Pages RSS Feed.

• Interested in a UK meeting?  Voice your opinion here

DC Metro Area, TBA More info as it becomes available.

June 2-5, 2007, ENDO 2007, Toronto, Canada, Metro Toronto Center. More info as it becomes available.

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• Discussions about Minneapolis in June here

October 6, 2007, Rockford, IL. More info as it becomes available.

• More upcoming local meetings are listed here


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I hope to see you tonight!


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