Cushing's Newsletter February 26, 2009

In This Issue

Welcome to the latest Cushing's Newsletter!

What's Happening at the Organization?

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Podcasts

Cushing's on Facebook and Twitter

Media - Amazing Kim

Want to Volunteer?

Clinical Trial: Women With Pituitary Problems Wanted For A Testosterone Study

Clinical Trials in Cushing’s Disease

Help Keep The Cushing's Sites Going

Adult Pituitary Conference in Las Vegas

Endo News: GH replacement in patients with non-functioning pituitary adenoma (NFA) treated solely by surgery is not associated with increased risk of tumour recurrence

Endo News: Diagnosis of rare disease brings area woman hope

Endo News: Pasireotide showed promise as an effective pituitary-targeted treatment for Cushing’s disease

Endo News: Corcept Therapeutics Announces Positive Results From Study of CORLUX

Endo News: King size! Henry VIII's armour reveals he had a 52in girth - for which he paid a terrible price

Endo News: Repeated transsphenoidal pituitary surgery (TS) via the endoscopic technique: a good therapeutic option for recurrent or persistent Cushing's disease (CD)

 

 

New and Updated Bios
Note that there are still 3 more current bios to be added to this list.

Updated Bio February 22, 2009
Joselle (Jo) is from Fredonia, New York. Although she didn't present as a typical Cushie, a doctor gave her a cortisol suppression test and she was diagnosed with a pituitary tumor. Joselle was the subject of a Live Interview in the Cushing's Help Voice Chat / Podcast series. Archives are available. Joselle was the subject of a newspaper article February 22, 2009.

New Bio February 19, 2009
Frank (franbony) is from New York. After 2 years of know knowing what was happening, she started testing and is on the long road to finding out what is wrong.

New Bio February 18, 2009
Shawna (cushings in colorado) is from Ft Collins, Colorado. She had robotic surgery July 19, 2007 to remove her adrenal gland. She lost 80 pounds in 5 months.

New Bio February 17, 2009
Amber (AmberC) is from Pittsburgh, Pennsylvania. The diagnosis of Cushing's due to a pituitary adenoma was made after MRI in June of 2007. Her first surgery was in September of 2007. She is now seeking the advice of a specialist to help get pregnant and have a baby before going back for her fifth surgery!

New Bio February 16, 2009
Sandy (jsdewys) is from Holland, Michigan. She was diagnosed with steroid-induced Cushing's and has many symptoms.

New Bio February 13, 2009
Lori (Frog) is from Longmont, Colorado. She was diagnosed with Cushing's Syndrome in December 2008 but despite all the testing, her doctors have yet to locate the source.

New Bio February 11, 2009
Lori is from Chester, South Dakota. She is not yet diagnosed with Cushing's but has had fibromyalgia for 6 years.

Updated Bio February 9, 2009
Heike (PeeQueen) is from Tallahassee, Florida. 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. She developed Diabetes Insipidus after her third surgery. She has added pictures to her bio. Heike updated her bio again after starting on Synthroid for thyroid issues.

New Bio February 8, 2009
Lorrie (lorrie) is from St Louis, Missouri. She is not yet diagnosed with Cushing's but she has had many symptoms and is testing.

New Bio February 6, 2009
Melody (Melody73) is from California. She is a newly diagnosed Cushing's patient but she doesn't yet know the origin. She has had a pituitary MRI and is awaiting the results.

Updated Bio February 5, 2009
Coleen (EyeRishGrl) is from Philadelphia, Pennsylvania. She has pituitary Cushing's and PCOS. Coleen updated her bio in February 2009 after her pituitary surgery. She has secondary adrenal insufficiency (Addison's disease) now.

New Bio February 3, 2009
Melesa is from Chapleau, Canada. Her 23 year old daughter is being tested for Cushing's and she Melesa doesn't know what to expect.

New Bio February 2, 2009
Heather (HeatherKY) is from Kentucky. In 2002, she developed a case of Bell's Palsy and was put on prednisone. In December 2008, after many years of feeling hopeless and alone, she was diagnosed with cyclical Cushing’s Disease caused by a pituitary tumor. Transphenoidal pituitary surgery has been scheduled for February 2009.

New Bio February 1, 2009
Tammie (makeitgreen) is from Hemet, California. She has been diagnosed with PCOS and has taken glucophage and clomid. She is still not feeling well and is seeking a diagnosis to help with her many symptoms. She will be the guest speaker in an interview February 26, 2009.

New Bio January 30, 2009
Michelle (Map820) is from Brookfield, Connecticut. She is not yet diagnosed with Cushing's but she has many symptoms.

New Bio January 30, 2009
Ellen (esg31) is from Wilmington, Delaware. Her son has been struggling for almost a year with unexplained physical and psychological symptoms. He has been tested for thyroid issues, Cushing's and pheochromocytoma.

New Bio January 28, 2009
Michele (blakeanddbrycemom) is from Wentzville, Missouri. She has suffered from a variety of mysterious symptoms including hydrocephalus. Two MRIs show a abnormal pituitary and a meningioma.

New Bio January 27, 2009
Michelle is from Hamilton, New Zealand. She was diagnosed with Cushings Disease when she was 21. She had a recurrence 3 years later. Her ACTH levels are high again.

New Bio January 25, 2009
Gina (ginapooh1969) is from Franklin, Massachusetts. She isn't sure if she has Cushing's but has many symptoms and a pituitary tumor.

New Bio January 24, 2009
Sarah (saskgurl26) is from Biggar, Saskatchewan, Canada. She was originally diagnosed with PCOS but doctors found what they thought was a prolactinoma. She was finally diagnosed with Cushing's and had pituitary surgery November 12, 2008.

New Bio January 22, 2009
Sara (SaraR) is from Birmingham, Alabama. She is not yet diagnosed bus has been suffering from Cushing's symptoms for over 2 years.

 

New and Updated Bios

Part 2: Pituitary Patient Symposium at Swedish

Date:   Saturday, May 9, 2009

Location:  Swedish Medical Center, Cherry Hill Campus

550 17^th Avenue

Seattle, WA 98122

Time:   9:00 a.m. – 5:00 p.m. 
Fee:   $50 per person (Breakfast, lunch and snacks provided;

(scholarships available)

You’re invited!

Please join us for the second annual Seattle Pituitary patient symposium, “A Patient’s Road Map to the World of Cushing’s Syndrome.” Experts from around the world will lead a day-long educational seminar and discussions focusing on Cushing’s syndrome.

There will also be opportunities for you to share your thoughts and experiences with other patients.

Register Online!
http://www2.eventsvc.com/swedishhealth?cat=Neurology

Background Information on Cushing’s

Cushing’s syndrome is a hormonal disorder caused by prolonged exposure to high levels of cortisol on the body’s tissues. Also known as hypercortisolism, Cushing’s syndrome is somewhat rare and most commonly affects adults aged 20 to 50. Cushing's disease is a form of Cushing's syndrome, caused by a hormone-secreting pituitary tumor. About 10 percent of clinically significant pituitary tumors secrete this excess hormone. This elevated hormone level in turn stimulates the adrenal glands to produce excess cortisol. This disease process is called Cushing's disease, named after the famous neurosurgeon, Harvey Cushing.

Location/Parking/Directions

http://www.swedish.org/blank.cfm?id=202

For more information: 206-386-2502

Pituitary Patient Symposium "A Road Map to the World of Cushing's Syndrome" in Seattle, WA.

I wanted to let you know about our upcoming patient symposium which will be held in Seattle, WA on Saturday, May 9, 2009.

The second annual pituitary patient symposium title is "A Road Map to the World of Cushing's Syndrome" and will be held at Swedish Medical Center's Cherry Hill campus in Seattle, WA.
We have eight faculty from around the country (1 international) that will be presenting to patients, and will also be speaking at a CME-accredited physician symposium the same day.

More info to follow.

Diagnosis of rare disease brings area woman hope

From http://www.observertoday.com/page/content.detail/id/519546.html

By JOSELLE SYRACUSE

Like countless others I have had an ongoing struggle with being overweight my entire life. So, it was no great surprise at age 44 that I decided to attempt losing weight once again.

This time was different. I joined Weight Watchers in September 2004. Aside from obesity I still had relatively good health. I didn't want to jeopardize that. In less than two years I lost 100 pounds. I felt wonderful exercising at least three times a week. I still wanted to lose 25 to 50 pounds more but that wasn't to happen. I maintained the weight loss until November of 2006. Gradually, I started putting weight on with no apparent cause. I wasn't eating any differently and continued to exercise. By February 2007 I had put on 40 pounds. It was then that I began to notice heaviness in my legs when I climbed stairs and walked at even the slightest incline. This muscle weakness progressed to the point of having difficulty standing from a seated position. The weakness increased and the weight piled on, despite healthy eating and exercise habits. My body was betraying me.

Other "symptoms" were increasingly more noticeable. Facial hair growth that started as an annoyance in about 2000 took on a life of its own demanding that I shave my face daily. This abnormal hair growth also covered my back. I was plagued with adult acne, menstrual irregularities and constant fatigue. By August 2007 I had put on about 80 lbs. My doctor ordered all sorts of blood and diagnostic tests zeroing in on the specific symptoms and ongoing complaints. Never once did he ignore my lament. Every test result would confirm my "good health". Why then did I feel so horrible?

By December of 2007 I was about to throw in the towel telling my doctor that perhaps it's all just my age. I must be pre-menopausal. I guess I just have to deal with it. He disagreed. My test results did not indicate such hormonal changes. I will never forget his words: "You know your body and you know that something isn't right. We are going to keep looking until we find out what it is". He then suggested "we" check for Cushing's Disease. A very specific blood test, a Dexamethasone Suppression test was ordered. This was the test that was to give me my life back thanks to Dr. Anthony Bartholomew of Fredonia.

The very high levels of cortisol in my body suggested Cushing's Disease, but the cause was yet to be determined. (Cushing's Disease is usually caused by a pituitary tumor, whereas Cushing's Syndrome is caused by an adrenal tumor. Not all pituitary tumors cause Cushing's Disease, either). In the meantime I developed hypertension. Finally, in May of 2008 I had an appointment with an endocrinologist, Dr. Howard Lippes in Williamsville. Given the rarity of the disease and the fact that I didn't "look" like the typical Cushing's patient, Dr. Lippes was convinced a mistake had been made and ordered several more diagnostic tests, some repeats of what was already done. Lo and behold, it wasn't a mistake. I had Cushing's Disease most likely caused by a pituitary tumor. In June I had a brain MRI which detected a pituitary micro-adenoma about 8mm in size. There is no treatment other than surgery. The tumor which secretes ACTH, the hormone that signals your adrenal glands to produce cortisol, must be removed as the condition is ultimately life-threatening often causing diabetes and cardiovascular disease. Cortisol occurs naturally in your system, but too much wreaks havoc on your body.

In July I was referred to Dr. Robert Fenstermaker and Dr. Nestor Rigual both of Roswell Park Cancer Institute in Buffalo. Pituitary tumors of this type aren't typically cancerous, but these surgeons specialized in this particular kind of surgery.

On Aug. 1, 2008, I had endonasal transphenoidal surgery to remove the tumor. Quite simply, they went through my nose! It is still considered neurosurgery given the pituitary gland's proximity to the brain. This delicate surgery was a success!! The entire tumor was gone. I was immediately placed on hydrocortisone. Yes, more steroids!! This was necessary until my adrenal glands functioned normally again. I was gradually weaned off the hydrocortisone taking my last dose on Christmas Eve 2008.

Fast forward to Jan. 19, my most recent visit to my endocrinologist. Normal cortisol levels are evidence that my adrenal glands are working properly. I'm officially cured of Cushing's Disease!! However, the recovery period hasn't been easy which isn't unusual. I've been told that it could take six months to a year to feel good again. Only recently am I seeing improvements. I am happy to report that I can honestly say I feel better and mean it. The hair on my back is gone and minuscule on my face. I'm starting to lose weight again and my muscles are getting stronger thanks to the physical therapy program I follow provided by Dr. David Root of Dunkirk. I can now stand up without preparing for the event!

My reason for writing this article is not to thank my wonderful doctors though I will always be eternally grateful. I just wanted to share my experience thereby spreading information about this sneaky, nasty, so-called rare disease. I think my doctors would agree that it really isn't all that rare. It's just under or misdiagnosed given the myriad of symptoms.

Does this sound like you or someone you know? Don't give up. If you are not as fortunate as I to have a doctor who listened, keep changing until you find someone who does.

Joselle Syracuse is a Fredonia resident who teaches in Jamestown. 

Read her bio on the Cushing's Help website

Listen to her live Cushing's Help Interview