Upcoming Cushing's Book


This project was started in June 2008 and put on hold due to several "life issues", one of them being the enormous amount of time it takes to apply for non-profit status.

Here are some of the thoughts and ideas that will be in the book when finished, hopefully by December 2009.

MaryO: some people have articles on the website like http://www.cushings-help.com/helpful_hints.htm and these:

On the website here

Discuss here at http://cushings.invisionzone.com/index.php?showtopic=32996

May 20, 2009 Cushing's Help and Support Newsletter


In This Issue

Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings


Cushing's on Facebook and Twitter

Media: Follow up to last week

Want to Volunteer?

Robin writes: Adult Onset Growth Hormone Deficiency: Phenotype and Benefits of Treatment

Video: Cushing Syndrome

Clinical Trials

Help Keep The Cushing's Sites Going

The Endocrine System

Endo News: Diagnosing Cushing’s syndrome

Endo News: Cushing’s syndrome (Hypercortisolism) from NLE Review Bullets

Endo News: Back Pain and Cushing's

Endo News: Pituitary-directed medical treatment of Cushing’s disease

Endo News: About Cushing's from OHSU

Endo News: Untreated Growth Hormone Deficiency Contributes to the Phenotype of Patients With History of Cushing's Disease

Robin writes...

New and Updated Bios
New Bio May 16, 2009
Melanie (Melanie W)
is from Oklahoma. She has many Cushing's symptoms and has been diagnosed with PCOS and mild hypothyroidism so far.
New Bio May 15, 2009
Shirley (SBett)
is from Ronan, Montana. After 6 years her doctor finally found a pituitary tumor on an MRI. She is testing and has high cortisol and growth hormone.
New Bio May 13, 2009
Jodi (Jodi)
is from Rochester, Michigan. She had surgery to remove half her pituitary. She is now having issues with adrenal insufficiency.
New Bio May 12, 2009
angelp (angelp)
is from London, England. She had her first pituitary surgery in January 2009 and a second in March 2009. She will have an adrenalectomy and radiotherapy to remove the rest of her pituitary tumor.
New Bio May 11, 2009
Sue (Sue)
is from Lombard, Illinois. She has many Cushing's symptoms and her cortisol levels are very high but the source of her Cushing's hasn't been found yet.
New Bio May 10, 2009
Kate (kate22)
is from Richmond, Virginia. She is not yet diagnosed with Cushing's but she is testing. She has many Cushing's symptoms.
New Bio May 10, 2009
Angie (dermpat)
is from Melbourne, Australia. She is not yet diagnosed with Cushing's but is testing for cyclic Cushing's.
New Bio May 10, 2009
is from Phoenix, Arizona. She has recently been diagnosed with a pituitary tumor and is looking for an endo.
New Bio May 10, 2009
Rachael (RachaelB)
is from Charlotte, North Carolina. She was recently diagnosed with Cushing's and will be having her pituitary tumor removed in August.
New Bio May 4, 2009
Shiloh (Shiloh)
is from Fort Collins, Colorado. She is not formally diagnosed. She is trying to manage her symptoms with healthy eating, massage and acupuncture.
New Bio May 3, 2009
Luisa (Luisa)
is from Knoxville, Tennessee. She was originally misdiagnosed with PCOS and is testing for Cushing's currently.
New Bio May 1, 2009
is temporarily outside of U.S.A. She is not yet diagnosed. Someone at a party saw her buffalo hump and asked is she knew about Cushing's. Her own research says she might have this and testing shows elevated cortisol.
New Bio May 1, 2009
Alisha (gbsawyer)
is from Kirksville, Missouri. She is not yet diagnosed but has many symptoms and is seeing a new endo.
New Bio April 30, 2009
is from Corona, California. She had transnasal surgery 10/2007 and stereotactic surgery 8/2008. Both surgeries have failed. She tried Ketoconozole for a month and ended up in the hospital because the medication was affecting her liver. She is currently doing nothing for her Cushing's.
New Bio April 29, 2009
Melissa (meltizzle)
is from Santa Fe Springs, California. She was recently diagnosed with Cushing's and thinks she had it since 2007.
New Bio April 29, 2009
is from Arizona. She has had diabetes for 18 years and is a brand new mom. About two years ago she started getting Cushing's symptoms and is scheduling adrenal surgery.
New Bio April 27, 2009
Patty (pattycakes)
is from Cincinnati, Ohio. She has many Cushing's symptoms but doctors are calling her pituitary tumor a Rathke Cleft cyst so she is still trying to get answers.
New Bio April 24, 2009
McCall (McKenzie)
is from Fairfax, Virginia. She was diagnosed with central adrenal insufficiency after an ITT (Insulin Tolerance Test) and is taking 15mg of Hydrocortisone a day for the ACTH replacement therapy. She is wondering if it is possible to have both adrenal insufficiency AND Cushing's.
New Bio April 22, 2009
Kirsty (kirstymnz)
is from Hamilton, New Zealand. Her doctors couldn't find the source of her ectopic Cushing's. She had a lung nodule but removal didn't help so she had a BLA (bilateral adrenalectomy).
New Bio April 22, 2009
Jeff (akflier)
is from Palmer, Alaska. He was diagnosed with pituitary Cushing's in July 2008 and had surgery in August 2008.

New and Updated Bios

Third Anniversary of My Kidney Cancer Surgery


I know that this isn't about Cushing's but I feel that my kidney cancer "counts" as a chronic disease.

The beginning recap is here: http://cushingshelp.blogspot.com/2009/05/third-anniversary-of-my-kidney-cancer.html

So, here we are 3 years later...

I find it amazing in a way.  The time seems to feel like more than 3 years.  Yet, had I been told I had 3 years to live back then, I would have seemed like a short time.  Amazing, the tricks that time can play.

I wish I could say that I feel wonderful now but I can't.  My energy levels are still so low and my temporary part-time job isn't helping.

Because the one adrenal gland I have isn't working and the other is gone, I'm still taking cortisol, although much less than my endo wants me to take.  If I take more, I start gaining weight again.

I'm feeling almost Cushie - when I'm home I'm sleeping but sometimes I's awake during the night, too.

I'm also eating more than normal, I think.  Not meals, but snacks, junky stuff.

Trisha Torrey wrote in her blog  about Patient Empowerment  a post titled An Ethical Conundrum - Should I Share This Information?  One of her questions was "How many patients, when given the choice between quality of life vs quantity of life, would choose quality anyway?"

Part of my response was "I want as much information as possible about my diseases and I want to be able to decide what do with that information...

I would much rather have a better quality of life than a longer one."

And it's true for me, today.  What is the point of hanging around for 20 or so more years if they're just spent sleeping?

True, I'm not in pain or anything but shouldn't there be more?  Am I just here to help other Cushing's patients?  I think I have enough started that future folks can help themselves.

I often see studies and clinical trials for Cushies and various drug  options.  And the cut-off date is always younger than I am.  Does this mean that possible future treatments wouldn't work for me?  Am I now too old to deserve a better quality of life?  What's the deal with that?

I know there are no answers to all this.  Maybe in my lifetime someone will come up with some answers to all this and I'll be out doing stuff.  I sure hope so!

But now it's time for a nap...

The Endocrine Glands


endocrine Pituitary Gland

The pituitary gland, which is located in the center of the skull, just behind the bridge of the nose, is about the size of a pea. It is an important link between the nervous system and the endocrine system and releases many hormones which affect growth, sexual development, metabolism and the system of reproduction.

Because the pituitary controls the function of most other endocrine oval gland at the base of the brain, in the fossa (depression) of the sphenoid bone,which produces a number of different hormones . It oversees hormone production by the sex glands (the ovaries, in women), adrenal glands, and thyroid gland. Pituitary disorders (such as tumors) can cause amenorrhea -- and, thus, be mistaken for early menopause.

The overall role is to regulate growth and metabolism. The gland is divided into the posterior and anterior pituitary, each responsible for the production of it's own unique hormones.

The pituitary gland makes hormones that affect the growth and the functions of other glands in the body and secretes hormones controlling ovulation. An image of the pituitary gland.

The pituitary secrets several hormones which are as follows:

Other pituitary gland disorders.

More on endocrine glands at http://cushingshelp.blogspot.com/

More Definitions

More images

Follow-Up on Erin's Twittered Pituitary Surgery


from http://news.barnesjewish.org/pr/bjh/Twitter-Neurosurgery.aspx

St. Louis Reporter Twitters Live Surgery at Barnes-Jewish

Kathryn Holleman



April 28, 2009, ST. LOUIS – As surgeons removed part of a patient’s pituitary gland at Barnes-Jewish Hospital April 27, local St. Louis television reporter Kay Quinn Twittered their progress from the adjoining control room.

The procedure was the first surgery at the hospital to be Twittered.

Twitter is a social media tool in which members can post messages, called “tweets,” in real time which other members can follow. Each post must be no longer than 140 characters long.

(Read transcript of Kay Quinn's Tweets here)

A handful of hospitals across the country have Twittered surgeries to educate medical residents, doctors at other hospitals or members of the public about a particular procedure. The tweets are not written by the surgeons performing the operation, but usually by residents, nurses or other surgeons who are observing nearby.

(See photos here)

The joint effort between Barnes-Jewish and local NBC-affiliate KSDK-TV was part of a series of stories Quinn is doing on Erin Kelley, a 27-year-old St. Louis woman who suffers from Cushing’s disease caused by a pituitary tumor.

In the April 27 surgery, Washington University surgeons Ralph Dacey, MD, chief of neurosurgery, and Richard Chole, MD, chief of otolaryngology, used a minimally invasive approach to remove a small tumor from Kelley’s pituitary gland through her nose.
Doctors hope removal of the tiny tumor will ease or eliminate Kelely’s Cushing’s symptoms, which include weight gain and fatigue.

Quinn had interviewed Kelley prior to surgery and aired a brief video news story prior to her surgery. She plans to air a longer story on Erin and the outcome of her surgery in May.

The surgery took place in the intraoperative MRI neurosurgery operating suite on the second floor of Barnes-Jewish. Quinn sat in the suite’s command center, watching the procedure through a window and on several video monitors.

James Johnston, MD, neurosurgery chief resident, sat next to Quinn explaining the procedure as it progressed and answering Quinn’s questions. Quinn typed “play-by-play” tweets, describing the action and reporting her impressions of the scene.

Her tweets ranged from clinical (“He just took out a piece of bone in the rostrum, which is the outer shell of the sphenoid”), to observational (“All is well in the OR. The room is dark now. Surgeons are tracking their progress on monitors.”) to conversational (“No music in the OR. Dr. Dacey says he doesn't like to listen to much music as he works. OK, sometimes he does.”).

Quinn’s potential audience for the Twitter session included more than 600 persons who subscribe to or “follow” her tweets through Twitter, including Erin’s family, who followed the surgery on their laptops in Barnes-Jewish’s neurosurgery waiting room.

The session was followed and later posted on KSDK’s web site and “Cushing’s and Cancer,” a Cushing’s disease blog.

[Find Cushing's & Cancer here: http://cushingshelp.blogspot.com/ ]