How low can you go... ~ Should Have Seen It...
By Steve
I am a Cushing's Disease survivor. I have fought this disease for years. On January 30th, 2009 I had a radical surgery bilateral adrenalectomy (BLA) in the attempt to cure it. This is my day to day struggle to recover and win. ...
Should Have Seen It... - http://www.shouldhaveseenit.com/
In This Issue
Welcome to the latest Cushing's Newsletter!
Cushing's on Facebook and Twitter
Media - Rare Care for a Rare Disease
Robin writes: Diagnosing and Treating Cushing's: Presentations by Dr. Theodore C. (Ted) Friedman
Clinical Trial: Women With Pituitary Problems Wanted For A Testosterone Study
Clinical Trials in Cushing’s Disease
Help Keep The Cushing's Sites Going
Endo News: dr Ted Friedman: What is Pseudo-Cushing's ?
Endo News: Dr Ted Friedman: Why Diagnosis is Less Important in Endocrinology in the 21st Century
Endo News: How many people are aware that April 8th is National Cushings Awareness Day???
Endo News: Merits and pitfalls of mifepristone in Cushing's syndrome
New and Updated Bios
Bios submitted after April 18 have not yet been formatted for the web.
Names in parens are user names on the message boards
Latest Cushing's Help Newsletter: March 12, 2009
New Bio April 18, 2009
Anne (kittiefoster) is from San Lorenzo, California. She is not yet been diagnosed but has had multiple symptoms of Cushing's for years. She will see an endocrinologist on May 15
New Bio April 10, 2009
Debi (debkelly) is from Palmdale, California. She is not yet diagnosed but has a lot of symptoms.
New Bio April 6, 2009
Betty (bettyd) is from Cedar Hill, Missouri. Her daughter has been in the diagnostic process of Cushings for several months. It was also suggested that she might have "cyclic" Cushings.
New Bio April 6, 2009
Yol is from Toronto, Canada. Her 12 year old daughter is going through Cushing's testing.
Updated Bio April 5, 2009
Beth (EFM1062) is from King of Prussia, Pennsylvania. She is not yet diagnosed with Cushing's but she has many symptoms and is testing. She has been diagnosed with Hashimoto's hypothyroid. Beth updated her bio April 5, 2009.
New Bio April 1, 2009
Sandra (sandra b.) is from Hammond, Louisiana. She had Cushing's in 2002 and is still affected by high cortisol levels. She had surgery to remove an adreno cortical carcinoma..
New Bio March 30, 2009
Tami (TamiinGA) is from Calhoun, Georgia. In May of 2008 she was diagnosed with 2 tumors on her left adrenal gland. She is on her 4th endo who just recently diganosed her with Cushing's.
New Bio March 26, 2009
Lisa Lee is from Swansea, Wales, UK. She was brought up a boy because of a rare medical condition called ‘congenital adrenal hyperplasia’ (CAH).
New Bio March 26, 2009
Jada (Jada71) is from Baton Rouge, Louisiana. She has been diagnosed with pituitary Cushing's and has been to see Dr Ludlam. A local endo told her: "You don't have Cushing's Disease, you have psuedo- Cushing's caused by insulin resistance." Jada asked how he knew this and he replied, "Because it's too rare and too hard to diagnose."
New Bio March 25, 2009
Leslie is from Chislehurst, Kent, United Kingdom. She was diagnosed with an adrenal tumour 15 months ago, then eventually diagnosed with Cushings and the adrenal gland and tumour were removed in July 2008. The other adrenal gland was found to be not functioning and she now hydrocortisone dependant and classified with secondary addisons. She suffers from various Cushing's problems.
Updated Bio March 24
Elisabeth (eals) is from Nanaimo, Canada. She updated her bio after pituitary surgery with Dr. Akagami at Vancouver Regional General Hospital on March 3, 2009
New Bio March 20, 2009
Jennifer (JWOLF74) is from Connecticut. She was diagnosed with PCOS about 10 years ago and had gastric bypass surgery 7 years ago. She is currently testing high and has been referred to a new endo.
New Bio March 16, 2009
Christina (happygirl) is from West Point, UT. She was diagnosed March 2009 with a pituitary source of her Cushing's Disease.
New Bio March 14, 2009
cris (cris) is from Michigan. She has finally been diagnosed with pituitary Cushing's after more than 20 years of trying to find out what's wrong. She has also been diagnosed with Hashimoto's Thyroiditis; Unstable Hypothyroidism;Hyperparathyroidism; Hypocalcemia; Severe D (hormone) deficiency; Adult GH Deficiency and Pituitary Tumor in MRI 2009.
New Bio March 12, 2009
Xchicagoan (xchicagoan) is from Huntersville, North Carolina. She is not yet diagnosed with Cushing's but has many symptoms including Adrenal Hyperplasia and thyroid issues.
New Bio March 11, 2009
Maryanne is from Sidney, BC, Canada (Vancouver Island). She has tumors on each adrenal gland and an MRI showed a 2 mm pituitary tumor. She is taking Ketoconazole until surgery
New Bio March 9, 2009
Jen (AuntieNoWay) is from Seattle, WA. All it took was one blood test and she was diagnosed. I had a tumor on her left adrenal gland that was causing her left adrenal gland to over produce the hormone cortisol. She was diagnosed but they waited 2 months to get her in for surgery and during that time her weight jumped dramatically from 180Lbs to 239Lbs and she was sicker than ever.
...to be Twittered/tweeted/whatever that would be.
This is so cool! A member of the message boards at http://cushings.invisionzone.com/index.php writes:
A news crew is going to be at my surgery!, Health reporter will be twittering the whole thing
I just got a call from the PR department at the hospital where I am having the surgery...
Channel 5 here in St. Louis will be doing a cover story on the whole process and the health reporter will be twittering the whole thing too. Crazy!! I will let you know more when I know!
Updates on this when more are posted. Her pituitary surgery will be April 27, 2009
MaryO'Note: Since these are blogs, I have no idea how accurate any of this info may be...
The Truth About Pituitary Tumors - Beyond Blue
By Beyond Blue
I think many people make the mistake of blowing off the diagnosis of a pituitary tumor. I know that I did. The word "benign" is misleading. I strongly suggest those who have one to check out this overall explanation by.
Beyond Blue - http://blog.beliefnet.com/beyondblue/
Congenital Hypothyroidism - An Endocrine Disorder Affecting ...
By admin
The emission of thyroid hormones is encouraged by TSH which is emitted from the pituitary glands which in turn is emitted in response to the TRH which is emitted by hypothalamus. Hypothyroidism in the infants may result from the lack of ...
Acne Treatment And Health Info. - http://www.natural-acne-treatment-and-products.com/acne-treatment/
Filthy Commerce: Yet another tiresome programming note ...
By Lisa Schmeiser
Tomorrow morning, I am going into UCSF's Moffatt Hospital for transphenoidal pituitary adenoma surgery. Translation: I have a benign tumor taking over my pituitary gland, so I am going to have it taken out.
Filthy Commerce - http://schmeiser.typepad.com/filthy_commerce/
Cushing's Family
By judycolby
So I would of loved to of been there when he found out that the physicals were pre op for surgery to treat Cushing's (which I'm sure I suggested to him at the other appointment and was completely dismissed). ...
Cushing's Family - http://judcol.blogspot.com/
AIDS TREATMENT NEWS Daily Alerts: Iatrogenic Cushing's Syndrome in ...
By John S James
Iatrogenic Cushing's Syndrome in HIV-Infected Patients Receiving Ritonavir and Inhaled Fluticasone: Description of 4 New Cases and Review of the Lit.. "The recommendation that concomitant administration of inhaled or intranasal ...
AIDS TREATMENT NEWS Daily Alerts - http://aidsnews.blogspot.com/
Cushing's Family
By judycolby
I'm thinking if you or a loved one has Cushing's, there is always something new to learn. If the wind doesn't stop blowing soon I might go crazy! Seems like it's been blowing for several weeks now. Unemployment update. ...
Cushing's Family - http://judcol.blogspot.com/
Cushing's Family
By judycolby
It just occurred to me that I have nothing so say about Cushing's at the moment. All we have to do before J&J's surgery is get medic alert bracelets and get their physicals. Seems so little to do. Posted by judycolby at 7:51 PM ...
Cushing's Family - http://judcol.blogspot.com/
Just Another Day in Paradise: National Cushing's Awareness Day - 2009
By Christina
April 8th is National Cushing's Awareness Day. I am copying Melissa's blog for today. She had all the information I wanted to share, so I figured why do the work when she already did it all so well? I hope she doesn't mind, and, ...
Just Another Day in Paradise - http://christinapay.blogspot.com/
Cushie Blogger
By MaryO
Diagnosing and Treating Cushing's: Presentations by Dr. Theodore C. (Ted) Friedman - Thanks, Robin! She posted this in her blog survive the journey survive the journey: Diagnosing and Treating *Cushing's* *. ...
Cushie Blogger - http://cushie-blogger.blogspot.com/
O'Connor O'Riginals
By MaryO
O'Connor O'Riginals. 2:59 PM. Filed under: National Cushing's Syndrome Awareness Day http://ping.fm/l4myc. 0 comments: Post a Comment · Older Post Home. Subscribe to: Post Comments (Atom). © 2008 O'Connor O'Riginals.
O'Connor O'Riginals - http://oconnororiginals.blogspot.com/
Cushing's Moxie: Melissa's Battle with Cushing's Disease: April ...
By Cushie Melissa
The endocrine disorder named after him is obviously Cushing's Syndrome or Disease. Cushing's Syndrome is the state of prolonged exposure to corticosteroids resulting from either excessive cortisol production or steroid medication. ...
Cushing's Moxie: Melissa's Battle... - http://cushingsmoxie.blogspot.com/
Richards Family Blog: The Ordeal
By Alicia, Jason, Carter, Aidan, & Keaton
As most of you knowI was finally given the official diagnosis of Cushing's Disease in December of 2008 and after much back and forth and waiting on labs and MRIs was scheduled for surgery of Feb. 25th of this year. ...
Richards Family Blog - http://ctrichardsfamilyblog.blogspot.com/
Ready Go: Battling Endometriosis: Dr. Friedman...
By ReadyGo
I'm heading to L.A. on Wednesday morning to see Dr. Friedman- the periodic Cushing's specialist. Everyday I change my mind about my own diagnosis. Depending on the moment, I'm sure that I have Cushing's, or that my endometriosis is the ...
Ready Go: Battling Endometriosis - http://thebattlecontinues.blogspot.com/
survive the journey: Cushing's Syndrome in Women With Polycystic ...
By survivethejourney@gmail.com (RobinS)
Cushing's Syndrome in Women With Polycystic Ovaries and Hyperandrogenism continues the theme of how to distinguish between PCOS and Cushing's. Above is a picture of a woman who was diagnosed as having PCOS. ...
survive the journey - http://survivethejourney.blogspot.com/
Cushing's Family
By judycolby
Rare Care for a Rare Disease - Ellen is a member of the Cushing's Help Message Boards From http://www.mywheaton.org/locations/elmbrook_memorial/EM_HG_surg_Ptstory1.asp Cushing’s Diseas... 14 hours ago. Living by the Book ...
Cushing's Family - http://judcol.blogspot.com/
Miss Diagnosis: Fast Forward? A New Surgeon
By Hi, I'm Rene
Hi, I'm Rene: I am a stay at home mom with two teenagers;I have a 17 year old son and a 15 year old daughter who is battling Cushing's disease. I've been happily married for 21 years and live in California. View my complete profile ...
Miss Diagnosis - http://missdiagnosis-rene.blogspot.com/
Thanks, Robin! She posted this in her blog survive the journey
survive the journey: Diagnosing and Treating Cushing's ...
By survivethejourney@gmail.com (RobinS)
Diagnosing and Treating Cushing's: Presentations by Dr. Theodore C. (Ted) Friedman. Dr. Friedman's original PowerPoints may be found at his website. These are very informative and easy to follow. ...
survive the journey - http://survivethejourney.blogspot.com/
Ellen is a member of the Cushing's Help Message Boards
From http://www.mywheaton.org/locations/elmbrook_memorial/EM_HG_surg_Ptstory1.asp
Cushing’s Disease is a rare condition where a non-cancerous tumor in the pituitary gland causes the production of excess cortisol, a stress hormone. This can lead to diabetes, obesity, high blood pressure, heart disease, suppression of the immune system, and much more.
“It basically ages you prematurely, affecting every system in the body” says Ellen, who, until recently, was suffering with Cushing’s Disease.
A resident of Colorado, Ellen went to her doctor complaining of many new symptoms, including fatigue and headaches. He suspected she might have Cushing’s Disease. He referred her to an endocrinologist in California for further testing.
The endocrinologist determined that Ellen’s condition would require surgery, removal of the tumor in her pituitary gland. Following the surgery, however, Ellen’s Cushing’s Disease persisted. Two options remained: another pituitary surgery, or a more definitive treatment, removal of her adrenal glands, the glands that sit atop each kidney and, in Ellen’s case, were producing the excess cortisol that was making her sick.
Ellen chose to remove her adrenals. Her endocrinologist immediately recommended the best doctor he knew of for the procedure: Dr. Manfred Chiang at Wheaton Franciscan Healthcare – Elmbrook Memorial.
Somewhat surprised that she was being referred to a hospital she’d never heard of in a small Wisconsin town, Ellen did some research. She discovered an online support group at www.cushings-help.com . She also learned that her endocrinologist was not steering her wrong.
“Dr. Chiang has a following,” explains Ellen. “Folks from all around the country had gone to him for their surgeries.” She decided to do the same.
When she met Dr. Chiang, she knew she had made the right choice. “He was wonderful; incredibly skilled and intelligent,” says Ellen. “He actively listened to me, followed through, and was exceptionally kind and compassionate.”
Her surgery went very well. Dr. Chiang performed the procedure laproscopically meaning it was minimally invasive. “There are very few hospitals in the country who regularly perform this unusual surgery,” says Ellen. “But fortunately, Dr. Chiang is considered one of the best bilateral adrenalectomy specialists in the nation.”
“I was up and about that same day,” says Ellen. “And I was finally free of Cushing’s!”
An excellent staff at Elmbrook Memorial enhanced Ellen’s experience.
“The entire experience was the most amazing I’ve ever had at a hospital,” Ellen says. “It was immaculately clean. I loved the warm colors, the layout, and the view. And the nurses were excellent; very intelligent, very willing and able to help. If I had an issue they figured out how to fix it and they fixed it. Every one of them introduced themselves to me, wrote their name on the board when they came into my room, and listened to me. That can be such a rare thing in a busy hospital. They really worked to make my hospital experience a good one.”
Ellen says at www.cushings-help.com she’s not the only one who feels this way. “I’ve never heard a negative word about Elmbrook Memorial.”
