Cushing's Alerts 2/27/2009

Cushing's Family
By judycolby
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 Meeting... 10 hours ago ...
Cushing's Family - http://judcol.blogspot.com/

Oscar's Site: First check up
By The Kelly Green Rogue
Created for Oscar and his fight against Cushing's Disease. Feb 26, 2009. First check up. Oscar's been on his meds for a couple of weeks now, we went back in for a check up last week and so far so good. ...
Oscar's Site - http://oscarhascushings.blogspot.com/

Cushie Blogger: Cushing's Alerts ~ 2/26/09
By MaryO
We are a group of Cushing's patients, family members and friends, who are members of the Cushing's Help and Support Message Boards. We don't always write about Cushing's because we have varied and interesting lives but the syndrome is ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

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

Cushing's Alerts ~ 2/26/09

Rayna's Rad Writings: Pituitary Disorder: Cushing's Syndrome
By Rayna
Cushing's is caused when the body is excessively exposed to cortisol. The pituitary secretes a hormone that causes the adrenal glands to secrete cortisol. So, Cushing's can happen when either the pituitary gland or the adrenal glands ...
Rayna's Rad Writings - http://raynasradwritings.blogspot.com/

Adult Pituitary Conference Pics - Jennifer's posterous
A lot of doctors were speaking about Growth Hormone deficiency and Cushing's Syndrome. Here is the picture of the Cushing's group (er, notice a few more women than men?) as well as pics of Friedman and McCutcheon. ...
Jennifer's posterous - http://rumpled.posterous.com/

Cushing's Alerts 2/24/2009

Medical PBL: 3rd Year Short Cases 3rd posting
By ~YM~
Endocrine: Cushing's, Diabetic foot, Hyperthyroidism Others:Rheumatoid, Scleroderma, Thalassaemia, For my scleroderma case, the q was like " Look at the patient and describe what you see." Oh ya, please recognise Raynaud's! ...
Medical PBL - http://medicalpblukm.blogspot.com/

Cushing's Family
By judycolby
Pituitary Patient Symposium at Swedish Medical Center May 9 - Download now or preview on posterous *2009 Patient Pituitary Conference - Roadmap to the World of Cushing's Syndrome.pdf* (542 KB) I wanted to let you k... 3 hours ago ...
Cushing's Family - http://judcol.blogspot.com/

Cushie Blogger: Pituitary Patient Symposium "A Road Map to the ...
By MaryO
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 ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

Herding Zebras: Part 2: Pituitary Patient Symposium at Swedish
By MaryO
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 ...
Herding Zebras - http://herdingzebras.blogspot.com/

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.

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

Google Alerts 2/20/2009

Cushing's Family
By judycolby
At the request of many friends, Cushing's allies, and far away family members, I'm posting some photos of me pregnant with my little peanut pu... 6 months ago. There must be some fun in the middle of chaos - I take photos ...
Cushing's Family - http://judcol.blogspot.com/

melonmonster: i need to stop ordering scrubs. i
By ali
... similarities between animal and human medicine... for example: cushing's and addison's disease. cushing's disease is an overproduction of cortisol. you have a "buffalo hump" (or cushion, easy way to remember cushing's) on your back, ...
just full of love. - http://melonmonster.livejournal.com/

Knitting Sweaters & Sitting Still: Silas
By Steven
An ultrasound confirmed that he had a rather large and seemingly fast-growing tumor on one of his adrenal glands that was also impinging on his aorta and causing symptoms of Cushing's syndrome. Although usually treatable, the form that ...
Knitting Sweaters & Sitting Still - http://knittingsitting.blogspot.com/

Beth's Blog: 6 Warnings You Should Not Ignore
By Beth
But when they're reddish purple, they can be a symptom of Cushing's syndrome, an adrenal disorder. Weight loss attributed to dietary changes or ill-fitting dentures can actually point to a serious underlying disease. ...
Beth's Blog - http://bethsownblog.blogspot.com/

survive the journey: BackTrack: Dynamic MR Imaging of the ...
By survivethejourney@gmail.com (RobinS)
Yet, I ultimately did have a proven adenoma which caused my Cushing's disease. If the MRI had shown even an inkling of the tumor to the trained eye, perhaps a doctor would have taken my symptoms more seriously. ...
survive the journey - http://survivethejourney.blogspot.com/

Google Alerts 2/19/2009

Symptoms of Cushing’s Syndrome
By admin
Categorized | Cushing's Syndrome · Symptoms of Cushing’s Syndrome. Posted on 19 February 2009 by admin. include fat deposits around the face. neck and trunk; tirednes!1; muscular weakness; salt and water retention; acne; easy bruising; ...
Go Nimble Health Care - http://health.gonimble.com/

Cushing's Family
By judycolby
I ended up printing a brochure on Cushing's (taken from the Cushing's web site) for her. She did say that her husband had died about three years ago. She told me he had been a very big man and died too young but the doctors did not know ...
Cushing's Family - http://judcol.blogspot.com/

Cushing's Help and Support Boards Calendar
Cushing's Help does not dispense medical advice or endorse any specific doctors or medical institutions. We do not endorse the views and opinions expressed on this forum. Before considering any treatment that affects your health, ...
Cushie Calendar - http://cushings.invisionzone.com/index.php?act=calendar&calendar_id=1

Just received Lab results - Low Carb Friends
By lowcarb0rbustmypants
I have Cushing's Disease and had a pituitary tumor removed in April of last year. I had to take replacement hydrocortisone up until October. From the looks of things, it's possible that I am hypothyroid, yet the lab results are all in ...
Low Carb Friends - http://www.lowcarbfriends.com/bbs/

Addison's / Adrenal Alerts 2/15/2009

Cushing's & Cancer: Hair, Hair, Go Away!
By MaryO
Addison's Alert. 3 days ago. Repairing the Healthcare System · More Medicaid: Is This What We Want For Our Healthcare System?: Part 2. 4 days ago. Kidney Cancer Bloggers · 100000 Mile Overhall is now complete! 2 weeks ago ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Happy Valentine's Day Leslie... ~ Should Have Seen It...
By Steve
It has brought me down. It has taken most of what I own. I am in debt. Yet, I still see the good in life. Take a look at life through my eyes. There is something wonderful to see everyday, if we stop to look. HOME; CUSHING'S; ADDISON'S ...
Should Have Seen It... - http://www.shouldhaveseenit.com/

Gina's Interview

It's on Google Alerts!

cyclic Cushing's and pituitary internet radio show 2/13/2009 ...
Listen to CushingsHelps February 13 internet radio show about cyclic Cushings and pituitary Gina was diagnosed with cyclic Cushings Disease in August 2008 and has a 34 mm abnormality on her pituitary gland and a possible ...
BlogTalkRadio.com Networks - http://www.blogtalkradio.com/

Unfortunately, all 3 of us - host Mary, co-host Robin and Gina had issues and were booted off the system several times so that this interview never really ended but abruptly stopped.

Gina has graciously agreed to return to finish up this interview after her upcoming surgery.

Thanks for your patience, everyone!

Gina (gmcook3) interview in 10 minutes (7:30 ET) at http://ping.fm/CarGK - Bio: http://ping.fm/zUDt1

Cushing's Alert

Full Circle... ~ Should Have Seen It...
By Steve
I have been tested, diagnosed, treated and cured of Cushing's Disease. Addison's Disease now replaces the old because of the BLA. While I have come full circle, we know that Cushing's Disease took years to damage body and mind. ...
Should Have Seen It... - http://www.shouldhaveseenit.com/

Cushing's Alerts - 2/7/2009

survive the journey: Bariatric surgery: Not the answer for obesity ...
By survivethejourney@gmail.com (RobinS)
Dr. Ludlam is well-known in the Cushing's patient community because of his stringent protocol for diagnosis and treatment of Cushing's. He and the others who authored this article have dealt with Cushing's patients for a very long time. ...
survive the journey - http://survivethejourney.blogspot.com/

Addison's Help: Adrenal Cushing's Video
By MaryO
Fantastic video about Kimberly's adrenal Cushing's and successful surgery http://ping.fm/yyRvrThis blog post is posted from Cushing's & Cancer at http://cu... 11 minutes ago. Cushing's Family. - Happy birthday, Justin! ...
Addison's Help - http://addisonshelp.blogspot.com/

Cushing's Alerts - 2/6/09

Ready Go: Battling Endometriosis: Quick Irritated Update
By ReadyGo
Thinks I MAY have Cushing's but wants more diagnostic testing. Doesn't want to perform any "screening tests" though because I already have too many things pointing toward Cushing's. His "screening tests" are tests that other doctors ...
Ready Go: Battling Endometriosis - http://thebattlecontinues.blogspot.com/

Has anyone went through cushing’s disease with a dog? | Tick ...
By Flea Killer
My Chihuahua exhibits symptoms of significant weight gain, thin skin, moderate to severe allergies. Our vet suspected cushing's disease but the test was.
Tick & Flea Killer - http://www.tickandfleakiller.com/

Cushing's Help and Support Boards Calendar
Gina was diagnosed with cyclic Cushing's Disease in August 2008 and has a 3-4 mm abnormality on her pituitary gland and a possible adrenal problem. Read her entire bio at http://www.cushings-help.com/ginac.htm ...
Cushie Calendar - http://cushings.invisionzone.com/index.php?act=calendar&calendar_id=1

By admin
Some of the added famous causes for this aggregation are the separation of secretor gland, Cushing's disease, pregnancy, malnutrition, burns, secretor therapy, checked insusceptible system, try contraceptives, ...
Health information, skin conditions,... - http://www.healthproofs.com/

Fantastic video about Kimberly's adrenal Cushing's and successful surgery http://ping.fm/yyRvr

Just finished a great interview with Melissa, pituitary tumor survivor. Listen at http://ping.fm/CarGK

Ami's Five Lousy Bucks

Read more about this at http://cushingshelp.blogspot.com/2009/01/cushing-awareness-day-auction.html

Thanks for your support!

Ami wrote: At this time any costs for the operations of cushings-help.com that exceed donations are paid for out of Mary's own pocket. Let's have some fun and raise some funds to support Cushings-help.com while Mary is moving it toward status as a non-profit. Remember: donations made at this time are NOT tax deductible. I don't know about you, but I cannot put a value on what the support boards there have given to me.

I am drafting YOU. Yes you... you know who you are... to offer an item that you have made or loved or just something fun that you are willing to give away in the name of showing some love to Cushings-help.com and to MaryO. You must be willing to post/send any prize donation directly to the recipient.

I will take donations of both "prizes" and money up until April 7th. On April 8th, which is Cushing's Awareness day, On April 8th we will use a random number generator to pick "winners" of the donations.

Members of this community are artists, quilters, jewelry makers, sewers, gluers, shoppers, readers. If you think someone else would like to have it, DONATE IT.

I'm talking that coffee mug that says "I used to care but now I take a pill for that" or a crocheted afghan that your Aunt Nelly made that clashes with your living room. OR what about that half finished project? DONATE IT. Endoscopic pictures of your surgical site? Sure... DONATE IT. (No donations of NJ sized boogers. PLease... I draw the line at bodily fluids.)

Either post a picture of your donation to this thread or you can send me a message and I will give you my e-mail address and post it for you.

How are you going to win? You're going to donate FIVE LOUSY BUCKS to this website. That's less then a large latte costs. You will note on your donation that it is FIVE LOUSY BUCKS to support MaryO and all she has done for us. For each FIVE LOUSY BUCKS you will get one chance at a prize. That's right... you can donate MORE if you want to. Imagine that? TEN LOUSY BUCKS will get you two chances, TWENTY LOUSY BUCKS will get you FOUR chances... you get the idea :)

Donate by PayPal or send it Snail Mail. You can find link and address here: http://www.cushings-help.com/support.htm

We are going to have some fun and raise some funds... COME ON BOYS AND GIRLS!!!

(fine print: if you really want at a chance at winning without donating you can send a 3x5 card with your name, address, e-mail and phone number on it to MaryO's snail mail address also found on the donation page. One entry per envelope per day... of course the really fine print is that FIRST WE NEED SOME PRIZES!)

I will post more details soon... So far I have a commitment of a donation of a medic alert bracelet from SherryC.

You can also feel free to use this space to brainstorm about ideas for donations. Everyone who donates a prize will receive one free chance to win a prize themselves. OMG! You might win your own prize!!! Make it a good one :D

(do you own or know a business that might be willing to provide something? Let us know!)

P.S. I will be having my first pituitary surgery this coming Tuesday, Jan. 27th, so I may be absent for a few days or more. If you write to me at that time and I don't get back to you right away that's likely why....

MaryO'Note: Thanks, Ami! You can discuss this on the message boards or on Facebook, if you wish.

Feb 1, 2009 - Cushing's Alerts

All the others today were for dogs :(

Cushing's Family
By judycolby
We just now have more people with Cushing's than I originally thought, a whole lot more travel, a whole lot more medical expense and at the moment a lot less income as the oilfield is in a major slump. Or course that has nothing to do ...
Cushing's Family - http://judcol.blogspot.com/