Monday, April 27, 2009

Pituitary Cushing's Surgery Twittered at
Follow Erin's pituitary Cushing's surgery Live!

Cushing's Blog, April 27, 2009

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... -

Thursday, April 23, 2009

4/27. 9am EST. Cushing's pituitary surgery to be updated on Twitter by
Cushing's Newsletter 4/23/09

Cushing's Newsletter, April 23, 2009

In This Issue

Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings


Cushing's on Facebook and Twitter

Media - Rare Care for a Rare Disease

Want to Volunteer?

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: Kanzius left hope

Endo News: MASEP gamma knife radiosurgery for secretory pituitary adenomas: experience in 347 consecutive cases

Endo News: Surgical Versus Conservative Management for Subclinical Cushing Syndrome in Adrenal Incidentalomas: A Prospective Randomized Study

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.

Add or Update your bio here

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
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
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
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.


New and Updated Bios

Upcoming Pituitary Surgery... be Twittered/tweeted/whatever that would be.


This is so cool!  A member of the message boards at 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

Tuesday, April 21, 2009

Pituitary Blog Alerts, April 21, 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 -


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. -


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 -

Saturday, April 18, 2009

Cushing's Alerts, April 18, 2009

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 -

Friday, April 17, 2009

Cushing's Alerts

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 ...

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 -

Friday, April 10, 2009

Cushing's Alert, April 10, 2009

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 -

Thursday, April 9, 2009

Alerts, April 9, 2009

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 -

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 -

O'Connor O'Riginals
By MaryO
O'Connor O'Riginals. 2:59 PM. Filed under: National Cushing's Syndrome Awareness Day 0 comments: Post a Comment · Older Post Home. Subscribe to: Post Comments (Atom). © 2008 O'Connor O'Riginals.
O'Connor O'Riginals -

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... -

Wednesday, April 8, 2009 Where we had lunch today. She was on Bobby Flay's Throwdown and she beat him! Yummy Pad Thai!
National Cushing's Syndrome Awareness Day
Happy Cushing's Awareness Day!

Friday, April 3, 2009

Cushing's Alert 4/3/09

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 -