Cushing's Help and Support

What's New? 

July 2, 2008

In This Issue:

Site NewsChat InfoMeetings BiosEndo News

Site News

Welcome to Cushing's Help and Support Newsletters!
These are all links to more information just click to read.

For Non-Profit Status

Voice Chats / Internet Talk Radio / Podcasts

Upcoming Guests:

  • No Interview July 3, 2008. Have a safe and happy Fourth of July!

    The Call-In number is (646) 200-0162.

    Listen to CushingsHelp on internet talk radio

  • Charlie (creativeogre), July 10, 2008

  • Jo and Corrie, date to be determined

  • Nicole B (Copacabana), date to be determined

  • Lisa (Ikho), date to be determined.

  • Judy's Sister, date to be determined.

  • Stacey, date to be determined.

  • LynziMarie, date to be determined.

  • 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

Also on the Website...

Your donations help this site keep running. Thank you!
Many thanks to these donors. Please join them!

Thanks to a suggestion on the message boards, Cushing's Help now has a mailbox for those who wish to donate by check!

To send a check:

Mary O'Connor
Cushings Help
4094 Majestic Ln. #328
Fairfax, VA 22033

For Non-Profit Status

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 toll-free number, new podcasts, voice chats and has a Columbus, OH picture.

Cushing's Books


Upcoming Chats

Next Scheduled Text Chat
Wednesday, August 27, 9PM Eastern. The Chatroom is open 24/7

Next VOICE Chat, August 28, 7:30 PM Eastern. Robin (staticnrg) will host. The Call-In number is (646) 200-0162. Upcoming guests include Gina, Dr. Rob, Jo and Corrie, Nicole (copacabana) and Dr. William Ludlam

Archived VOICE Chats
Listen live to archived interviews with MaryO, Joselle, Mar, Sheryl, Gracie, Katie, Kate, Charlie, Dr. Dori Middleman, Heather S, Leslie, Jackie and Jordan, Ferol, Kevin, Steve, Jenn, Crystal and Monica, JenS, Karen, Robin, Alicia, Jayne, Judy and Jess. Over 8,000 listeners...so far! Achived audio is available through the Podcast page of this site, BlogTalkRadio, the CushingsHelp Podcast or through iTunes Podcasts


Upcoming Meetings:

• 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: Seattle / Portland; 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 Helpful Doctor

Add Your Helpful Doctor

New Helpful Doctor June 17
Dr. Lawrence Mallette, Houston, TX


Newest and Updated Bios

Add Your Bio

New Bio August 4
Maria Laura (MariaLaura) is from Cerro al Volturno, Italy. She is not yet diagnosed with Cushing's but is testing. When her gynecologist told her he thought she had Cushing's, she was reminded of the House episode on Cushing's.

Updated Bio August 4
Kimberly (Kimberly)
is from Sydney, Australia. She is not yet officially diagnosed with Cushing's but her test results indicate a pituitary source for her symptoms. Kimberly updated her bio August 1, 2008 after she was diagnosed with PCOS, Syndrome X (metabolic syndrome), mild arthritis, early stage heart disease, and mild Mesial Temporal Sclerosis (brain damage).

New Bio August 2
Marianne (Marianne)
is from Newcastle, New South Wales, Australia. She is not yet diagnosed with Cushing's but has many symptoms and is testing. She was diagnosed with Ehlers-Danlos Syndrome (EDS) about 3 years ago.

New Bio August 2
Jeannette (Jinetto)
is from Michigan. Her symptoms point to Cushing's and she's seeing an endocrinologist in August. She has been diagnosed with PCOS so far.

Updated Bio August 1
Amanda (amanda w)
is from Ohio. She was diagnosed with Pituitary Cushing's about 2 years ago. Her doctors aren't treating her symptoms but she is going through a lot of testing. She updated her bio in June, 2008 after having participating in the SOM230 study and updated her bio again after being diagnosed with hyperaldosteronism.

Updated Bio August 1
Kimberly (Kimberly)
is from Sydney, Australia. She is not yet officially diagnosed with Cushing's but her test results indicate a pituitary source for her symptoms. Kimberly updated her bio August 1, 2008 after she was diagnosed with PCOS, Syndrome X (metabolic syndrome), mild arthritis, early stage heart disease, and mild Mesial Temporal Sclerosis (brain damage).

Updated Bio July 31
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. She updated her bio July 31, 2008.

Updated Bio July 31
Amber (TandA)
had a 5mmx8mm pituitary tumor removed at University of Virginia Dec. 05. She is now in remission. Bio updated and rewritten July, 2008.

New Bio July 26
Michelle (Michelle)
is from Scottsdale, Arizona. She has many symptoms of Cushing's and an enlarged thyroid and calcium deposits on her thyroid.

New Bio July 26
Lynn (Lynn)
is from Connecticut. She is only 14 and has had surgery for her pituitary Cushing's. She's still on replacement steroids.

New Bio July 19
Raymond (rkwan77)
is from Rego Park, New York. He is recovering from pituitary surgery in 2005 and is still dependant on meds. He has osteopenia.

New Bio July 19
Mandy (Mandy)
is from Southend on Sea, England. She has several diagnoses and has seen a vast array of medical personnel. She is diagnosed with PCOS but not yet with Cushing's.

New Bio July 19
Ashleigh (Marinewife05)
is from New Bern, North Carolina. She has been diagnosed with PCOS and is testing for Cushing's.

New Bio July 16
Lacudia (lacudia)
is from Long Beach. California. She is not yet diagnosed with Cushing's but has HEP C from a transfusion when she was 14. Her grandson is testing for Cushing's and her brother has Addison's.

Updated July 18
Amy (AmyElizabeth)
is from Arkansas. She has a 25 year history with a prolactinoma. Her current symptoms look like Cushing's symptoms and her new endo will run tests for Cushing's.

New Bio July 17
Jackie
is from Northampton, England. She has had a pituitary tumor removed but she has a recurrence and tumor is in the cavernous sinus.

New Bio July 16
Christina (kayc6751)
is from Pittsburgh, Pennsylvania. She recently had an MRI which showed a pituitary adenoma. Her cortisol levels are still not where they should be.

Updated July 16
Arden
is from Orlando, Florida. She has had Cushing's since she was 10 but didn't have pituitary surgery for many years. She had a second surgery May 2, 2007. She never tested positive for Cushing's but the pathology for both surgeries showed an ACTH-secreting tumor. Arden updated her email address.

New Bio July 16
Julie (Tuliptchr)
is from San Antonio, Texas. She had her pituitary rumor removed at Vanderbilt Medical Center in Nashville. Julie also had Large B Cell Lymphoma at the same time. Her chemo included cortisone.

New Bio July 12
Lisa (allergygirl)
is from Atlanta, Georgia. She is not yet diagnosed with Cushing's but has many symptoms. After taking prednisone, she developed a rash. She is now allergic to onion, garlic, wheat, soy, shrimp, salmon, peppers, canned foods (because she's allergic to the nickel), strawberries, apples, and tomatoes.

New Bio July 12
Julie (JulieS)
is from Cumming, Georgia. She has Cushing's from steroid use, just like her Mom has. Her mom recognized Julie's symptoms before her doctor did.

New Bio July 12
Kristina
is from Milford, Delaware. She is not yet diagnosed with Cushing's but has a lot of symptoms. She has Hashimoto's.

Updated Bio July 11
Jennifer (jqatar07)
is currently from Ripley, West Virginia. She was previously from Doha, Qatar. She is not yet diagnosed with Cushing's but has many symptoms. She has been diagnosed with hypothyroidism and she takes Toprol XL for heart palpitations. She saw a Cushing's Expert in Dubai UAE in November 2007. Jennifer updated her bio after seeing an endocrinologist in Dubai UAE. Two pituitary tumors were found and the endo referred her to see Dr. Bill Ludlam. She updated her bio July 11, 2008 after her diagnosis. She is heading to the University of Virginia July 23rd, 2008.

New Bio July 11
Andrea (Andrea)
is from Bellevue, Ohio. She is not yet diagnosed with Cushing's but has had symptoms for a year and a half. She has been seeing a neurologist and has been doing some testing.

New Bio July 11
Jeff (jeff m)
is from Abernant, Alabama. He was diagnosed with a pituitary tumor in Oct of 2005. His endo recently diagnosed him with diabetes, hypogonadism, and now suspects that he may have Cushing's. Jeff may be the subject of a future Live Interview in the Cushing's Help Voice Chat / Podcast series. More information as it becomes available. Archives will be available after the chat.

New Bio July 2
Rene' (mrskittycat)
is from Gainesville, Georgia. She had several years of unexplainable problems, which included a heart attack, before she was able to get treatment. She had pituitary surgery at OHSU four years ago.

New Bio July 2
Elizabeth (Elizabeth)
is from Jacksonville, Florida. She was diagnosed with a pituitary tumor two years ago and recently diagnosed with Cushing's disease. She hasn't seen her doctor since her diagnosis. Elizabeth may be the subject of a future Live Interview in the Cushing's Help Voice Chat / Podcast series. More information as it becomes available. Archives will be available after the chat.


Clinical Trial

Clinical Trial June 23
Cushing’s Disease Study CSOM230B2305
The purpose of this clinical research study is to determine the most safe and effective dose of an investigational drug for participants 18 years of age and older who have ACTH-dependent Cushing’s disease...

Clinical Trial June 20
San Antonio Clinical Trial for Cushing's Syndrome
You may be eligible for free study related medical care and compensation for time and travel...

Clinical Trial June 7
Free Clinical Trials at OSHU
Qualifying patients will receive SOM230 (a new drug that effects all five somatostatin receptors) for a 16-day period to see if it effectively treats Cushing's disease...


Endo News

Endo News July 29
A Simple and Cost-Effective Approach to Assessment of Pituitary ACTH and GH Reserve – Combined Use of the Overnight Metyrapone Test and IGF-I Standard Deviation Scores

Endo News July 22
Somatostatin and dopamine receptors as targets for medical treatment of Cushing’s Syndrome
Somatostatin (SS) and dopamine (DA) receptors are widely expressed in neuroendocrine tumours that cause Cushing's Syndrome (CS)...Although selected cases of adrenal CS may benefit from sst or DA-targeted treatment, its total contribution to the treatment of these patients is likely to be low as surgery is effective in most cases...

Endo News July 18
Cushing Syndrome Secondary to Ectopic ACTH Secretion by Dedifferentiated Acinic Cell Carcinoma of the Parotid Gland

Endo News July 15
Diagnosis and management of primary aldosteronism.
The purpose of this article is to provide a systematic overview of the literature on adrenal suppression and Cushing's syndrome secondary to an interaction between inhaled/intranasal fluticasone and ritonavir. The clinical presentation, diagnosis and management will be discussed...

Endo News July 14
Adrenal suppression and Cushing's syndrome secondary to an interaction between ritonavir and fluticasone: a review of the literature
The purpose of this article is to provide a systematic overview of the literature on adrenal suppression and Cushing's syndrome secondary to an interaction between inhaled/intranasal fluticasone and ritonavir. The clinical presentation, diagnosis and management will be discussed.

Endo News July 10
Growth Hormone Deficiency by Growth Hormone Releasing Hormone-Arginine Testing Criteria Predicts Increased Cardiovascular Risk Markers in Normal Young Overweight and Obese Women