Friday, January 30, 2009

Dr Ted Friedman's First Interview Archive

Dr Ted Friedman joined us for his first live interview January 29, 2009.  He will return February 19, 2009.

You may also listen to the free iTunes Cushing's podcast.

Theodore C. Friedman, M.D., Ph.D. has opened a private practice, specializing in treating patients with adrenal, pituitary, thyroid and fatigue disorders.  Dr. Friedman has privileges at Cedars-Sinai Medical Center and Martin Luther King Medical Center.  His practice includes detecting and treating hormone imbalances, including hormone replacement therapy. 

Dr. Friedman is also an expert in diagnosing and treating pituitary disorders, including Cushings disease and syndrome.

Some of the topics covered: What is Cushing's?; 17-hydroxy; ACL (lab); acne; ACTH; adrenal; atrial myxoma; awareness; birth control pills; Carney Syndrome micronodule adrenal; CBG globulin; central hypothyroidism; circadium rhythm; cortisol; creatinine; cyclic Cushing's; depression; dexamethosone supression tests; Diabetes Insipidus; ectopic; endoscopy; Esoterix; estrogen; fingerstick machine; genetic testing; growth hormone; hormones; hump; hyperplasia; incidentaloma; IPSS; LabCorp; LH, FSH; libido; Liddle test; lung; Lynette Nieman; memory; MEN1; Nelson's Syndrome; NIH; optic nerve; parathyroid; PCOS; periods; pituitary MRI; pituitary; psych disorders; salivary cortisol; stretchmarks; surgeons; symptoms; testing; testosterone; thymus; tired; tumor; UFC; ultrasound; Vanderbuilt; weight; wired at night

Dr. Friedman's interview on iTunes podcast or search iTunes for "cushings"
It's the last day to register for Magic Foundation Conference, including Cushing's and Growth Hormone Issues

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


Authors: Wagenmakers, M. A. E. M.1; Netea-Maier, R. T.1; van Lindert, E. J.2; Timmers, H. J. L. M.1; Grotenhuis, J. A.2; Hermus, A. R. M. M.1

Source: Clinical Endocrinology, Volume 70, Number 2, February 2009 , pp. 274-280(7)

Publisher: Blackwell Publishing

Summary Background

No data on results of repeated transsphenoidal surgery via the endoscopic technique for patients with persistent or recurrent Cushing's disease are available.

Design and patients

We retrospectively evaluated the remission rates and complications of repeated transsphenoidal surgery via the endoscopic technique in 14 patients with persistent (N = 6) or recurrent (N = 8) Cushing's disease treated in our centre between 1999 and 2007.

Main outcomes

Remission was defined as the disappearance of symptoms of hypercortisolism with basal plasma cortisol level ? 50 nmol/l 24-48 h after glucocorticoid withdrawal and/or suppression of plasma cortisol level ? 50 nmol/l after 1 mg dexamethasone overnight within the first 3 months after transsphenoidal surgery.


With repeated endoscopic transsphenoidal surgery a remission rate of 10/14 (71%) was achieved. No patient had a relapse during a median follow-up of 24 months. Cerebrospinal fluid leakage was the most frequent complication (6 patients) and 11 patients required hormonal substitution after surgery. The success of repeated transsphenoidal surgery could not be predicted by visualization of an adenoma on MRI before first or second surgery, histopathological confirmation of an ACTH secreting adenoma after first or second surgery, treatment with cortisol lowering agents before first or second surgery, the operation technique used during the first surgery, persistent vs. recurrent disease after the first surgery, age, gender and interval between the two surgeries.


Repeated transsphenoidal surgery via the endoscopic technique is a good treatment option for selected patients with recurrent or persistent Cushing's disease following primary pituitary surgery.

Document Type: Research article

DOI: 10.1111/j.1365-2265.2008.03334.x

Affiliations: 1: Department of Endocrinology and 2: Department of Neurosurgery, Radboud University Nijmegen Medical Centre, Geert Grooteplein 8, 6500 HB, Nijmegen, the Netherlands


The full text electronic article is available for purchase. You will be able to download the full text electronic article after payment.

Thursday, January 29, 2009

Dr Friedman's interview: on iTunes tomorrow
Tonight 8:30pm ET! Dr Ted Friedman (Dr. F.) answers your questions: Cushing's Thyroid and more!

Thanks and An Apology

Thank you again to all who "voted" for me.

I now feel that this was a whole scam for them to get more members for their site so when they sold it they would make a bigger profit.

This site has been all over the Blogging Community and Twitter since yesterday. There's a great summary here: 

I feel like I was duped and I'm a dope; the fat, ugly girl who is suddenly wooed by the football captain and nothing good comes of the affair.

I'm very sorry for those of you who signed up for this site to vote for me in this contest that turned out to be rigged.

I've emailed the owners of the site, both old and new, and requested to be removed immediately. They want to call me to "talk about it". No way!

I've changed my name on the blog, should you go there, and the blog URL now goes to That should get me off their site at once.


Thanks to Robin for this great new "logo"!

Wednesday, January 28, 2009

All is not Well(sphere) | Musings of a Distractible Mind

All is not Well(sphere) | Musings of a Distractible Mind:
"...So I took them up on it, as did over a thousand others. My posts began to be published on their website, I got a nifty advertisement to put on the sidebar in my blog (showing that I am an expert). I stayed in it for four months - sending four months of my content to them. I did not see any significant traffic from Wellsphere for that entire time.

So I got out. There was nowhere on the website that allowed me to get out, so I had to send several emails requesting that my blog be removed from their list. They were “disappointed” but let me leave.

No harm, no foul? Not so fast. Today Dr. Val (who was always suspicious about this group) posted about the sale of Wellsphere to HealthCentral for an “undisclosed amount of money...”"

Just yesterday I posted this on my message boards:

Many, many thanks to everyone who voted in this "competition". I really appreciate it and all the wonderful things you said on there. I saved all your comments smile.gif

I don't think it was/is a fair competition because it was supposed to end last week on the 15th and someone figured out how to enter after the voting had started and got a lot of votes - so they extended the final date.

I really don't care if I win or not, especially since there aren't any prizes, no car, no cash, not even a door number 3 but it is nice to be in the top 2 of something for most of this month.

I do think if you have rules, you shouldn't change them midstream for one new person.

Thanks again for all your votes and comments of support!

I, like many, many others have requested that my information be removed from this site.


Idea on TwitPic

Saturday, January 24, 2009

A Great Quote From Helen Keller

This one resolution is the key-note of my life. It is always to regard as mere impertinences of fate the handicaps which were placed upon my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers.

-- Helen Keller (1880-1968) American Writer

New York Times Article on Pituitary Tumors


A pituitary tumor is an abnormal growth in the pituitary gland, the part of the brain that regulates the body's balance of hormones.

The pituitary gland is a pea-sized endocrine gland located at the base of the brain. The pituitary regulates and controls the release of hormones from other endocrine glands, which in turn regulate many body processes. These hormones include:

  • Adrenocorticotropic hormone (ACTH)
  • Growth hormone (GH)
  • Prolactin
  • Thyroid-stimulating hormone (TSH)

About 75% of pituitary tumors release hormones. When a tumor produces too much of one or more hormones, the following conditions may occur:

As the tumor grows, hormone-secreting cells of the pituitary may be damaged, causing hypopituitarism.

The causes of pituitary tumors are unknown, although some are a part of a hereditary disorder called multiple endocrine neoplasia I (MEN I).

There are other types of tumors that can be found in the same area of the head as a pituitary tumor:

  • Craniopharyngiomas
  • Cysts
  • Germinomas
  • Tumors that have spread from cancer in another part of the body (metastatic tumors)

About 15% of tumors in the skull are pituitary tumors. Most pituitary tumors are located in the anterior pituitary lobe and are usually noncancerous (benign).

Pituitary tumors develop in about 20% of people, although many of the tumors do not cause symptoms and the condition is never diagnosed during the person's lifetime...


This article also includes causes; a comprehensive symptoms list; treatments and much more. Read it at


MaryONote: It's so nice to see articles like this getting out into the mainstream press. For so many years pituitary tumors weren't talked about. As a matter of fact, often when I've told people about my surgery they didn't even know where the pituitary gland was located. Many would indicate the abdominal area and think it was there.

Hopefully, with more news items in papers and on TV the general public will be more aware of the pituitary (and adrenal) and their various locations.

Someday...I wish...that people will be aware of Cushing's like they are of thyroid issues or diabetes. not that I wish that more people had Cushing's, of course, but I'd just like to see more awareness, knowledge and understanding.

Someday, I hope that people will be tested more routinely for these "orphan diseases", doctors won't automatically decide that the patient is causing his/her own symptoms and get to the diagnostic and treatment phases more quickly.

A statistic I've seen many times over the years, that 20% of all people have a pituitary tumor was mentioned in this article:

Pituitary tumors develop in about 20% of people, although many of the tumors do not cause symptoms and the condition is never diagnosed during the person's lifetime.

The last part is especially scary: "the condition is never diagnosed during the person's lifetime."

How about getting people diagnosed - and cured - while they're still alive?

Friday, January 23, 2009

Cushing's Awareness Day Auction

5lousybucks Ami wrote: At this time any costs for the operations of that exceed donations are paid for out of Mary's own pocket. Let's have some fun and raise some funds to support 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 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:

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.

Thursday, January 22, 2009

13 minutes until interview with Arubiana:

Pituitary Alerts

Medical Blog » Blog Archive » Metyrapone Test
pituitary gland. How is the test performed? Metyrapone is given in 4 doses over a 24-hour period, or sometimes as a single dose at 11 p.m. Metyrapone is given orally in tablet form. At 8 a.m., a blood sample is taken from a vein on the ...
Medical Blog -

does 1 injection of test 250 (cyp.) shut you down?
just curious when the hpta - hypothalamic-pituitary-testicular axis - starts to suppress . say i take a shot of test 250 tonight for example would i. Bodybuilding Forums -

Spicy & Tasty Indian Recipes - Peas Kadhi Recipe - Capsicum With ...
Symptoms of Pituitary Tumor. Pituitary gland is a pea sized organ in the middle of the brain. As the name suggests, pituitary tumor... alt text Tips on Removing Makeup. It’s a universal fact that women want to present ...
Women's Online Magazine - Girls Magazine -

Fitness Blog » How Safe Are Human Growth Hormone Supplements?
Our pituitary glands produce the hormone in abundance for most healthy individuals. It encourages the proper mechanism of metabolism and internal organs working well, which are all important in maintaining the balance of the entire body ...
Fitness Blog -

Medically Mind Numbing: Wikipedia
By Shawn Vuong
While following around the neurosurgeon who concentrated on neuro-oncology, we rounded on a patient who was suspected of having a pituitary tumor. This attending wanted to order some blood tests to look for hormone imbalances that ...
Medically Mind Numbing -

Conditions that can cause obesity | Life and style | BMJ Group

Conditions that can cause obesity | Life and style | BMJ Group:
"...Cushing's syndrome

A condition called Cushing's syndrome can make you gain weight, especially on your face and around your waist. It means your body is making too many corticosteroids. These are chemicals that control how your body uses fat and sugar. If you have too many corticosteroids, you can feel tired, hungry and bloated.

It may happen when a lump grows in your adrenal glands. These glands lie on the surface of your kidney. Your adrenal glands make corticosteroids. The lump makes your body produce extra corticosteroids. Cushing's syndrome can also happen when lumps grow on your pituitary gland or another part of your body..."

What else might it be? | Life and style | BMJ Group

What else might it be? | Life and style | BMJ Group:
"...Problems with the adrenal gland, called Cushing's disease. This means your body makes too much of a natural steroid hormone. There are lots of physical symptoms too, such as weight gain. So, doctors are usually clear if people have this and not schizophrenia..."

Wednesday, January 21, 2009

Latest Cushing's Newsletter (1/21/09)

Modigene Announces Positive Results Of Pilot Toxicity Study Of Its Long-Acting Human Growth Hormone HGH-CTP

16 Jan 2009   
Modigene Inc. (OTC Bulletin Board: MODG) reported results from a pilot toxicity study in primates designed to assess the safety of hGH-CTP, its long-acting human growth hormone (hGH), as well as to provide preliminary information on the approximate injection frequency that will be needed in human patients. The study was designed to elicit potential adverse effects from a single, very large dose of hGH-CTP, also known as MOD-4023. No adverse effects were observed, and the data from this study also support once-weekly or bi-monthly injection frequency in humans.

The pilot study included a group of primates that received a single injection of hGH-CTP containing a dose that was 1,040 times the daily dose of growth hormone recommended for use in human patients. No adverse effects were observed in any of the primates. In addition, the half-life and AUC (area under the curve) of hGH-CTP as measured in primates support a potential once-weekly or bi-monthly injection frequency in humans. This would replace the multiple injections per week that are currently required, as there is presently no long-acting hGH on the market.
"Our long-acting hGH-CTP has exhibited excellent safety in all preclinical studies to date, so we were not surprised by these first data in primates showing that huge single doses of hGH-CTP appear very safe," said Dr. Avri Havron, CEO of Modigene. "We also were pleased to report a significant increase in the half-life of hGH-CTP as we moved from rats to primates, in line with industry-accepted extrapolation models for the expected increase in the half-life of therapeutic proteins between these species. Based on the results of this pilot study, we anticipate that hGH-CTP could potentially achieve weekly or bi-monthly dosing frequency in humans."

Dr. Havron added, "We look forward to completing these toxicology studies and finalizing the IND for hGH-CTP in the coming months. We are pleased too that our current cash resources should enable us to complete the hGH-CTP Phase I clinical program and continue into Phase II trials over the next 24 months."

hGH-CTP, also known as MOD-4023, is Modigene's proprietary long-acting version of human growth hormone. hGH is used for the long-term treatment of children and adults with growth failure due to inadequate secretion of endogenous growth hormone. Patients using hGH must currently inject the drug between two and seven times each week, a frequency that can be particularly burdensome for pediatric patients. In contrast, hGH-CTP is expected to require only weekly or bi-monthly injections. The primary indications for hGH in children are growth hormone deficiency, kidney disease, Prader-Willi Syndrome and Turner Syndrome. In adults, the primary indications are replacement of endogenous growth hormone and the treatment of AIDS-induced weight loss. In 2007 the annual market for hGH was estimated at $2.5 billion. In addition to its use for medical indications, hGH has been shown to promote a number of "lifestyle" benefits including reversal of non-voluntary weight loss, increased energy levels, enhanced sexual performance, lower cholesterol and improved appearance of the skin.

Modigene's CTP technology was discovered by researchers at Washington University in St. Louis and is based on a short amino acid sequence that occurs naturally in humans, the carboxyl terminal peptide (CTP). When attached to a therapeutic protein, CTP extends the time that the protein is active in the body. The potential utility of the technology has been demonstrated by Schering-Plough, which licenses the CTP technology for fertility applications only. In July 2008 Schering-Plough announced successful data from its Phase III ENGAGE trial demonstrating that women receiving a single injection of the fertility drug FSH-CTP achieved the same pregnancy rates as women receiving seven consecutive daily injections of commercial FSH. This 1,509 patient trial, which was the largest double-blind fertility trial ever conducted, formed the basis for a Marketing Authorization Application by Schering-Plough that was recently accepted for review by the European Medicines Agency. Modigene is using the same CTP technology to extend the duration of action of human growth hormone and other therapeutic proteins. It has an exclusive license from Washington University to the CTP technology for use with all therapeutic proteins except for the four endocrine hormones licensed to Schering-Plough.


Modigene Inc. is a biopharmaceutical company applying its patented CTP technology to develop longer-acting, proprietary versions of already approved therapeutic proteins that currently generate billions of dollars in annual global sales. The CTP technology is applicable to virtually all proteins, and Modigene is currently developing long-acting versions of human growth hormone, interferon beta and erythropoietin, which are in late preclinical development, as well as GLP-1. For more information on Modigene, visit
Safe Harbor Statement: This press release contains forward-looking statements, including statements regarding the results of current studies and preclinical experiments and the effectiveness of Modigene's long-acting protein programs, that are made pursuant to the safe harbor provisions of the Private Securities Litigation Reform Act of 1995. Investors are cautioned that forward-looking statements involve risks and uncertainties that may affect Modigene's business and prospects, including the risks that Modigene may not succeed in developing any commercial products based upon its long-acting protein technology, including any long-acting versions of human growth hormone, erythropoietin, interferon beta or GLP-1; that the long-acting products in development may fail, may not achieve the expected results or effectiveness and/or may not generate data that would support the approval or marketing of these products for the indications being studied or for other indications; that ongoing studies may not continue to show substantial or any activity; and other risks and uncertainties that may cause results to differ materially from those set forth in the forward-looking statements. The development of any products using the CTP platform technology could also be affected by a number of other factors, including unexpected safety, efficacy or manufacturing issues, additional time requirements for data analyses and decision making, the impact of pharmaceutical industry regulation, the impact of competitive products and pricing and the impact of patents and other proprietary rights held by competitors and other third parties. In addition to the risk factors set forth above, investors should consider the economic, competitive, governmental, technological and other factors discussed in Modigene's filings with the Securities and Exchange Commission.
Modigene Inc.
Article URL:
Main News Category: Endocrinology
Also Appears In:  Pharma Industry / Biotech Industry,  Clinical Trials / Drug Trials,  

Tuesday, January 20, 2009

Win An Acer Netbook While Spreading The Word About Kidney Cancer

It's easy!  Click here and Juby and Carrie will show you how it's done.  Help us expand our survivor community and raise awareness about kidney cancer by posting videos on YouTube and sharing your story.  Here are just a few examples of topics for your video: 
     ♦ Pay tribute to a loved one who lost his or         
        her battle with this disease 
     ♦ Honor someone who is in the fight 
     ♦ Share your story of survival 
     ♦ Tell us how you are helping to raise awareness 
     ♦ Share your experience on a clinical trial or 
        approved therapy
Instructions: Submit your video to YouTube and email us the link to your video.  Instructions for uploading a video can be found on the YouTube website.  You can even do it from your cell phone.  There is no limit on length of videos or number of videos submitted. 
Eligibility criteria: All videos must include the key words "Kidney Cancer Association" and our web address,, somewhere in the message.  Videos must be submitted by Friday, March 20th.
Winner selection criteria: Video with greatest number of views wins. For those who submit multiple videos, number of views will be determined by the cumulative total of views from all videos.  Hint: increase number of views by sending a link to your video(s) to friends and family, posting video(s) on social networking sites, etc.
Prize: Acer Aspire One Netbook with built-in webcam and winning video featured in Kidney Cancer Association’s April e-newsletter.

Monday, January 19, 2009

Cushing's Audio: Why Not Give it a Try? It's a Cinch! at
Robin has another wonderful post. Read or comment here:
The date of Dr Ted Friedman's interview has changed! It will now be January 29, 2009 at 8:30PM eastern. Listen live or to the archive.

Saturday, January 17, 2009

From My Email

IN MEMORY .. . . . . . .

These are the colors that represent the different cancers. All you are asked to do is keep this circulating. Even if it's to one more person. In memory of anyone you know that has been struck by cancer.


A Candle Loses Nothing by Lighting Another Candle.

Please Keep The Candle Going!

This one I do ask that you please send on.  By sending this on, you will think and realize how you've been blessed,  up until now.

This is a disease that affects all families.  No one is exempt!


MaryO'Note: All of the above can be said of Cushing's, too.  We have a ribbon - one unified ribbon for any type of Cushing's.  Cushing's can affect any family, any age, any race.

If you don't have Cushing's OR cancer, consider yourself blessed.  If you don't have Cushing's AND cancer - wow, you're lucky.

If you have both - welcome to my life. 

I've known many struck down by cancer but I've known many more struck down by Cushing's.  Cushing's is an insidious disease.

 Like Natalie, you think you're cured, good to go but you're not.

Like Sue, you're cured of Cushing's then cancer comes along and you don't have a chance.

Like Martha, you're on your way to a Cure for Cushing's.  Then...

Like Cookie who soldiered on through Cushing's, Nelson's, adrenal and pituitary issues, to finally end up on dialysis.  How unfair is that?

So many Cushies over the years, far too many.  There are probably even more that I never even heard of.

I sometimes think of the 2 diseases I had.  Sure, cancer is hard, scary, life-threatening, painful.  But I often think Cushing's is harder.

Everyone knows about cancer and forwards notes around like the one above.  When was the last time there was a forwarded email asking people to support Cushing's, to advocate for a cure, for better testing?

We need to keep pushing to get the word out about Cushing's so the Natalies, Sues, Marthas and Cookies have a better chance to LIVE.

Today we started adding audio Cushing's announcements. Listen at

Kidney Cancer - National Patient, Survivor, and Caregiver Conference



National Patient, Survivor, and Caregiver Conference

Saturday, February 14, 2009

8:00 A.M. to 5:00 P.M.

M. D. Anderson Cancer Center
Cancer Prevention Building
CPB 8th Floor
1155 Pressler
Houston, TX 77030

Registration = $25

Please call 1-800-516-8051 ext. 103 to register,

Click here to register online or click here to view the agenda

Friday, January 16, 2009

Survival Lessons From a Sinking Plane - Well Blog -

Survival Lessons From a Sinking Plane - Well Blog -
"“...We’ve heard from people on the plane that once it crashed people were calm — the pervading sound was not screaming but silence, which is very typical,” said Ms. Ripley, who for years covered floods, plane crashes and other disasters for Time magazine. “The fear response is so evolved, it’s really going to take over in a situation like that. And it’s not in your interests to get hysterical. There’s some amount of reassurance in that I think.’’

In her book, Ms. Ripley chronicles how individuals and groups behave during disasters ranging from the tragic Beverly Hills Supper Club Fire to the World Trade Center attacks. World Trade Center survivors, for instance, describe the stairwell evacuations as quiet and orderly, despite the chaos around them.

“You don’t hear the mayhem and hysteria that we would expect,’’ Ms. Ripley said. “That doesn’t mean people aren’t frightened. It means their brain is paying attention to everything going on and they are waiting for direction...’’"
I have never been in a plane crash - thank goodness - but I have found all this to be true when facing potential health disasters in my life.

Husband having a stroke after a TIA; mom being diagnosed with cancer once and a second time; dad going through cancer twice, chemo; me finding out I have a pituitary tumor that has to be removed, me finding out I need my kidney removed due to cancer NOW.

During all those events, I was calm as a cucumber. Got done what I needed to do. Talked to people I never would have. Never afraid. Race to the hospital from a sound sleep. Argue with hospital staff that we were at the wrong hospital. Carry dad up the stairs to the doctor when the elevator was out. Whatever.

But when it was over, I'd fall apart. Then there was time to think and realize the what-ifs. What if it spread? What if the stroke was paralyzing? What if the tumor couldn't be removed? What if there was no cure...?

I imagine those flight survivors are thinking about all the what-ifs today.

I hope their dreams and "playbacks" are better than mine sometimes are!
140 Health Care Uses for Twitter
Cushing's group on Twitter:
So glad to have power again, phone service again and heat coming back!

Thursday, January 15, 2009

Thanks to Robin, I just made a Twitter Group at for our Cushings group.

Wednesday, January 14, 2009

Blog competition has been extended. Haven't voted yet? You still have a chance vote at

Blog Competition is Extended

The deadline for voting is extended until January 31

We've received numerous requests from bloggers who did not hear about the competition until after the holidays to allow their readers a bit more time to vote. We've therefore decided to extend the deadline to give everyone a fair chance to get votes and ensure that the Peoples’ voice is heard. The new deadline will be Saturday, January 31 at midnight Pacific time.

The race for the top 10 spots is picking up fast. After going back and forth during the week, the top two positions are again held by Mary O and See Kim W, whose passionate blog readers have taken the time to click on the "Vote for Me" badges on their blogs and respond to their posts asking for support.  Christine G literally zoomed from behind to take third place. She tells us she was touched by the response of her readers to the competition.

Vote for this blog here:

PHBA Help CushingsHelp Win!

Tuesday, January 13, 2009

Cushing's board system admin says "We are working to bring the server back online ASAP."
The Cushing's boards seem to be down at the moment. Hopefully back soon!

Monday, January 12, 2009

New drug for kidney cancer patients

KCRibbon from

Torisel was approved last year

VANCOUVER (NEWS1130) - The BC Cancer Agency is now funding a new kidney cancer treatment, the only one that's effective in treating the disease in its advanced stages.

The drug is called Torisel and it was approved by Health Canada late last year.

Wendy Vogt of New Westminster is a kidney cancer survivor and says this new treatment offers hope to those who had little before.

"Traditional therapies like chemotherapy or radiation are totally ineffective in treating kidney cancer and at that time there was just no other option.  And that's why there's been such an urgency about finding new ways of treating kidney cancer and Torisel is one of those new drugs that has been proven effective."

The drug is effective against all forms of Kidney Cancer.

It's the only drug available that can extend the lifespan of people in the advanced stages of the disease.

Sunday, January 11, 2009

Internal Medicine Posting

Internal Medicine Posting:
"I've always wondered why despite 3 postings(180 people) who have taken medicine, less than 10 is willing to share. Like i've always said, We need to complete each other, not compete with each other. Holding on to this, I tried my best to offer guidance to my colleagues, whoever interested.

But it seems that i overlooked the dangers of teaching, especially in a medical faculty. Different people have different styles and these people always say other methods are wrong except for their own."

The above is from an obstetrician/gynecologist's blog but it seems to relate to Cushing's and Cushing's organizations, too.

There are so few of us Cushies, it seems we should band together for the common cause instead of having several different factions.

I've noticed something similar with kidney cancer groups, too, though. Too many of us gathering together in little groups scattered around rather than one big group, getting lots of attention and getting things done.

Oh well, maybe someday, in a "more perfect world".

Medical PBL: Examination of a Cushing's

MaryO'Note: This doctor from Malaysia hopes that everyone should recognize a Cushing's patient!  We Cushies have always say that we could recognize another sufferer but it would sure be nice if doctors could recognize this disease this easily!

Should we go to Malaysia for easier, faster diagnosis?


By now, I hope that everyone should be able to recognize a Cushingnoid patient even before you examine a patient. Therefore, it is more of a showmanship for a short case of a patient with Cushing's syndrome/disease.

As Cushing's has clear cut characteristics, it is nice if a medical student can be able to find out the cause and the complications of Cushing's along the examination. There ius no need for a thorough examination of a particular body system as you'll be needing to go through almost the whole body. Below is a rough guide which welcomes comments and criticism to improve it.

  1. Hands - Inspect the hands for any deformities, vasculitic lesion or pulp atrophy which may be suggestive of autoimmune origin such as rheumatoid arthritis and SLE. Therefore, you should also run your fingers briefly along the small joints of the hands to palpate for the joins for signs of any swelling or tenderness. Have a light pinch at the skin of the dorsum part of the hand, yours and the patient's to compare the skin thickness. Remember, exogenous steroids administration may cause skin thinning.
  2. Forearms - Inspect for any bruises which may be suggestive of side effects of steroids or complication of Cushing's syndrome.
  3. Facial - Look out for any plethoric features, malar rash or acnes. These are suggestive of Cushing's as well. Discoid rash is almost a pathogmonic feature especially if it is also found at the back of the ears.
  4. Hair - Stroke the patient's hair (Inform the patient before doing this!!) to examine for alopecia (more hair may fall off or patches of baldness can be seen).
  5. Eyes - Examine the eyes for any signs of cataract. This may not require fundoscopy as sometimes it can be severe enough that it can be seen by the naked eyes. You may use two pentorches (one below the face pointing upwards and the other having a quick flash at the eye). This can be due to side effect of Cushing's or a diabetic patient. Remeber, Cushingnoid can be diabetic as well.
  6. Oral - Examine the oral cavity at the mucous membrane for any ulcers. This can be a sign of SLE. Superimposed thrush can be present too, which may be a diabetic sign.
  7. Upper torso - inspect and feel the supraclavicular fossa and interscapular area for fat pads. These are the signs of a Cushing's: Buffalo hump and supraclavicular fat. Also, try to elicit tenderness along the vertebra spine by gently pressing from the cervical spine downwards to sacral spine. Ask the aptient if there's any pain felt, as this can be a sign of osteoporosis as a result of exogenous steroids.
  8. Abdomen - Inspect for purple striae on the abdomen as a sign of Cushing's. Remember that adequate exposure is the key in finding the purples striaes. Medical students tend to miss the sign as they had not lower the pants enough to expose the lower part of the abdomen. Try to palpate for any adrenal masses. (Adrenal adenoma)
  9. Legs - You may look for bruises and skin thinning here as well. However, if there is positive findings on the forearm, most likely there will be findings on the legs. It is nice to show to the examiner that you are observant, but some examiners may not mind if you missed this. (Correct me if I'm wrong)
  10. Proximal myopathy - In a patient with Cushing's, there tend to have proximal myopathy. Test both upper limb's muscle for shoulder abduction and adduction (you may use the chicken wing manouever) as well as the flexion and extension of the arm.
  11. Tell the examiner that you would like to end the examination by:
    • getting the patient to squat to confirm for proximal myopathy.
    • measure the patient's blood pressure
    • (optional) - test the urine for glucose
    • (optional) - check the visual fields ( possible pituitary tumor, adenoma,etc)
    • (optional) - examine the fundus for optic atrophy, papiloedema, signs of hypertensive or diabetic retinopathy
So, if there's any mistakes here, do correct me. I'm more than willing to share the differences as well.
Here's a brief rundown of the causes of Cushing's syndrome:
  • exogenous steroids
  • pituitary adenoma
  • adrenal adenoma
  • adrenal carcinoma
  • ectopic ACTH (small cell carcinoma of the lungs)
Some extra stuff for you to ponder:
  1. Classification (Types) of Cushing's syndrome
  2. Investigations for Cushing's syndrome
  3. Management for the Cushing's according to the causes.

Saturday, January 10, 2009

Listening to Barbara's interview about pituitary Cushing's on iTunes. You can listen here, too:

The New Life of e-Patient Dave: Anticancer foods, part 2: sugars

The New Life of e-Patient Dave: Anticancer foods, part 2: sugars: "

==== Bottom line ====

Foods we can use liberally:

Mixed whole-grain cereals (Yum!)*
Oatmeal, All-Bran, Special K
Multigrain bread (not just wheat, even whole wheat)
Rice: whole grain, basmati, Thai (NOT white)
Pasta (preferably multigrain) cooked al dente
Oats and other grains (not corn)
Legumes: peas, beans, yams, etc.
Fruits in their natural state, especially blueberries, cherries, raspberries.**
Drinks: flavored water; green tea; red wine with meal
Garlic, onion, & shallots lower insulin peaks when mixed with foods"

Renal Cell Carcinoma Resource Center News - Index

Renal Cell Carcinoma Resource Center News - Index

Just saving the link!

Top 10 List of Medical Breakthroughs Impacting Healthcare in 2007 Published November 7th, 2006 | Depression Guide

Top 10 List of Medical Breakthroughs Impacting Healthcare in 2007 Published November 7th, 2006 | Depression Guide:

"8. Targeted cancer therapies: Using cell growth inhibitors to treat cancers, such as renal cell carcinoma, the most common type of kidney cancer."

Friday, January 9, 2009

The New Year

So, the New Year is going.

I haven't kept any resolutions but, then, the ones I "made" were the ones I always do - exercise more, eat less, drink more water, tidy the house more.

I think that those are all kind of hopeless.

I think I'm doing generally better than I was last year at this time.  My counselor thinks I am, at least doing better than I was two years ago.

We both think it's maybe because of my part-time, temporary job.  I'm getting out of the house more, being with people, getting away from talking about Cushing's all the time and working on the computer with websites, news items, blogs and whatnot.

So, I'm working more and napping less but I seem to be getting it mostly done.  I was never great with housework so it's hard to tell if things are worse or not.

I am teaching piano less than ever.  I hate to give it up completely, though, just in case.

Today, Friday, is my day off and I so enjoy this - although I'm catching up on Cushing's work.  All the new bios and accumulated news items through the week.

What will this year bring? 

Will I get more energy somehow? 

Will I decide to work part-time on a more permanent basis?  Could/should I even think of that? 

Will my family stay healthy?  No more strokes, cancer, unknown issues!  Will we travel more like we always say we will?

Tune in as all these questions are answered!

The Instincts to Trust Are Usually the Patient’s


Robin shared this article...


Not long ago, I took care of an elderly man with congestive heart failure. A few days into his stay in the hospital, he told me he was not going to make it out alive. “I am going to die here,” he whispered, as if letting me in on a secret.

I tried to reassure him: on the scale of disease I normally treat, his case was relatively mild. But then he became sicker.

His bloated legs dripped fluid, soaking his bed sheets and puddling on the tile floor. His blood pressure dropped. He became delirious. I was perplexed by the precipitous downturn. What did my patient know that I did not?

After several days of keeping round-the-clock vigil in the intensive care unit, his wife of nearly 50 years could no longer bear his suffering and requested hospice care. A few hours before he died, groggy from morphine, he managed to summon a few moments of lucidity. Gripping his wife’s hand, he said to her, “You’re doing the right thing.”

Every day in medicine there are examples of patients who know they are about to die, even if no one else does. They often have a feeling of impending doom before a catastrophic event like a heart attack or a fatal infection, and though doctors don’t know how to explain it, most of us take it seriously.

When we talk about instinct in medicine, we usually talk about expert clinicians grasping diagnoses in ways that seem to defy analytical explanation. These doctors appear to know almost intuitively which data to focus on and which to ignore. Of course, their decision-making is based on experience and deductive reasoning (and perhaps on evidence, too), yet it seems almost mystical.

I will never forget the time in medical school when we presented a baffling case to the chief of medicine. He made a diagnosis of primary pulmonary hypertension within seconds, on the basis (he claimed) of the loudness of the second heart sound, an incredible feat of observation and logical synthesis.

This sort of diagnostic intuition is becoming rare in the current era of technological medicine. Patients today often receive a battery of tests even before a physician examines them. The results, usually expressed in numbers that give a misleading impression of absolute precision, tend to lull doctors into a sort of laziness that has atrophied instinct.

On the other hand, doctors’ prognostic instincts have always been poor. In my work as a critical care cardiologist, I am often asked to predict how long someone is going to live. I know how useful such projections can be to patients and their families, but I rarely, if ever, venture a guess because they are so often inaccurate. (I am usually too optimistic.)

So it amazes and baffles me when patients have a sixth sense about their own deaths. Last year, my team cared for a woman who told us calmly on morning rounds that she had a feeling she was going to die that day.

A few hours later she complained of belly pain, and when a tube was inserted through her nose and into her stomach, old digested blood — “coffee ground” secretions — came up. Her blood count plummeted, and within a few hours she had spiraled into shock and multiple organ failure, even before we could get a CAT scan to see what was going on. It was totally unexpected, one of the most rapid noncardiac deaths I have ever witnessed.

I don’t know how my patient was seemingly able to predict her own demise. Perhaps high levels of circulating adrenaline caused a reaction similar to a panic attack; I don’t know. But I have learned over time to take such intuitions very seriously.

Sometimes, morbid instincts derive from other sources. In 2007, The New England Journal of Medicine had the story of a cat named Oscar who lives in a nursing home in Providence, R.I., and seems to have an uncanny sense for when elderly residents are about to die.

He goes to their rooms, curls up beside them — even those residents for whom he has previously shown little interest — and purrs. Staff members at the facility have learned that this is a telltale sign of impending death, having witnessed this behavior in the deaths of at least 25 patients. “This is a cat that knows death,” one doctor said. “His instincts that a patient is about to die are often more acute than the instincts of medical professionals.”

No doubt there are more such animals. But I have learned that the best instincts in medicine derive from the patients themselves. Their intuitions about their own health may be denigrated by doctors. But we must learn to pay attention to them. As my patients have taught me, they often hold the vital clue.

Sandeep Jauhar is a cardiologist on Long Island and the author of the recent memoir “Intern: A Doctor’s Initiation.”

Free Book Online: Living Healthier and Longer - What Works and What Doesn't

Welcome to the online edition of "Living Healthier and Longer - What Works and What Doesn't".

by Carl Bartecchi, M.D. and Robert W. Schrier, M.D.


Download and Print the Entire Book Free!

This is book is part of an innovative public health initiative to disseminate timely, accurate, and understandable health information on a wide scale.

This book has been provided, free of charge, to 60,000 households in Pueblo, Colorado, thanks to the generous contributions of:

The Chamberlain Foundation
Parkview Medical Center
The Pueblo Chieftain
Pueblo City-County Health Department
Ryals' Family Foundation
St. Mary-Corwin Medical Center
University of Colorado School of Medicine

We are also making it available on this
website or soon you will be able to order a printed version for a nominal fee to cover book, handling and mailing.

Interrelationships between Ovarian and Pituitary Hormones in Ovulatory Menstrual Cycles across Reproductive Age


Journal of Clinical Endocrinology & Metabolism, doi:10.1210/jc.2008-1684
The Journal of Clinical Endocrinology & Metabolism Vol. 94, No. 1 138-144
Copyright © 2009 by The Endocrine Society
Interrelationships between Ovarian and Pituitary Hormones in Ovulatory Menstrual Cycles across Reproductive Age
David M. Robertson, Georgina E. Hale, Damien Jolley, Ian S. Fraser, Claude L. Hughes and Henry G. Burger

Prince Henry’s Institute of Medical Research (D.M.R., H.G.B.), Clayton, Victoria 3168, Australia; Department of Obstetrics and Gynaecology (G.E.H., I.S.F.), Queen Elizabeth II Research Institute for Mothers and Infants (DO2), University of Sydney, New South Wales 2006, Australia; Monash Institute of Health Services Research (D.J.), Monash University, Clayton, Victoria 3168, Australia; and Quintiles Inc. (C.L.H.), Research Triangle Park, North Carolina 27709

Address all correspondence and requests for reprints to: David Robertson, Ph.D., Prince Henry’s Institute of Medical Research, P.O. Box 5152, Clayton, Victoria 3168, Australia. E-mail:

Context: Ovarian hormones regulate pituitary gonadotropin secretion across the menstrual cycle via negative and positive feedback mechanisms. The contribution of individual hormones is complex and is a continuing area of research.

Objective: The aim of the study was to identify relationships between LH/FSH and estradiol, progesterone, inhibin A, inhibin B, and anti-Mullerian hormone (AMH) in ovulatory menstrual cycles across reproductive age.

Design: Serum ovarian and pituitary hormones were studied in a group of young (<35 yr; n = 21) and older (>45 yr; n = 55) women. The slopes of the regression lines relating the ovarian and pituitary hormones were determined by multiple linear regression analysis and expressed with 95% confidence intervals for each ovarian hormone, with FSH and LH as independent variables. Both simultaneous and delayed (time lagged) relationships were examined.

Results: Clear associations were evident for the lagged prediction of FSH, with significant negative associations being evident with inhibin B and AMH in the follicular phase and with estradiol, inhibin B, progesterone, and AMH in the luteal phase. For the lagged prediction of LH, significant positive and negative associations were observed with estradiol and inhibin B, respectively, in the follicular phase and a negative association with progesterone and inhibin B in the luteal phase.

Conclusions: It is concluded that in the follicular phase, inhibin B is a major feedback regulator of FSH and may also be a negative feedback regulator of LH. AMH may be indirectly involved in FSH regulation.

A Novel Approach to RCC Treatment



by John Schieszer

Researchers are investigating compounds that block a protein involved in cancer-cell DNA repair

PHILADELPHIA—Researchers say they may have identified a novel approach to treating renal cell carcinoma (RCC). It involves using compounds that block a cancer gene's repair mechanism so that chemotherapy is more effective.

“Cancer cells are notorious in their ability to rapidly create copies of themselves,” said Robert H. Weiss, MD, professor of nephrology at the University of California at Davis and chief of nephrology at the Sacramento VA Medical Center in California. “While the latest medications slow down that process, they do not tend to be curative and they have many side effects. We wanted to find ways to help make chemotherapeutics as effective as possible at the lowest doses possible.”

New medications work by destabilizing cancers at the DNA level, thus reducing their ability to replicate. Knowing that the p21 gene has an important role in restoring cancer-cell DNA and potentially circumventing the benefits of those treatments, Dr. Weiss sought to identify compounds that could disrupt this pathway.

After testing thousands of compounds, Dr. Weiss and his colleagues found 12 that bind to recombinant protein p21. Additional tests showed that three of those compounds decreased p21 expression, blocking the ability of kidney cancer cells to mend and making them more responsive to DNA-damaging treatments.

Dr. Weiss and his team are now determining the lowest possible concentration at which the three candidates remain effective. The researchers' findings appear in the January 2009 issue of Cancer Biology and Therapy.

“The results are very exciting, especially given how difficult kidney cancer has been to treat so far,” Dr. Weiss told Renal & Urology News. “Our work offers hope that in the future, these p21 inhibitors can be refined and used in concert with other conventional as well as novel cancer treatments to increase the comfort and life spans of patients with kidney cancer.”

He presented findings here at the American Society of Nephrology's Renal Week conference.

My techie dog now has a page on Facebook at

Cushings's: Palatine resident helps others after overcoming health problems



By Kimberly Pohl

Bernie Pedersen was growing, just not vertically.

As an 8-year-old, he stood about 4-foot-3 and weighed 52 pounds. Four years later, he was 4-foot-5 and 125 pounds.

Doctors brushed it off. With a 4-foot-11 mother, he'd probably be small as an adult, they said.

Then came the anxiety, emotional outbursts, muscle pains, depression, even suicidal thoughts. It took two years, but the proper diagnoses finally came: Pedersen had the endocrine disorder Cushing's disease and craniopharyngioma, a benign tumor associated with the pituitary gland. He'd need to have surgery and get all his hormones replaced artificially.

Now 29, the 6-foot-4 Palatine resident and Lake Zurich High School grad hovers over most and helps guide others through similar growth disorders. He volunteers with the Oak Park-based Major Aspects of Growth in Children, also known as the Magic Foundation.

The Safeco Insurance Foundation recently recognized Pedersen, an insurance agent, with its 2008 Community Hero award. In his name, the group donated $15,000 to the Magic Foundation, which provides support to more than 25,000 people and families affected by a variety of medical conditions affecting growth.

"I have 18 years experience with this and can provide a lot of insight," said Pedersen. "Adults, kids and their parents are scared seeing this for the first time. I try to support them and show them they're not alone."

Kids often share their fears about puberty with Pedersen, whose own adolescence was nightmarish. Before surgery at age 11 to remove his walnut-sized brain tumor, he played sports and took honors classes.

"He was a handsome, athletic kid who came back to junior high with 52 staples across his head and wandering eyes," said his mother, Susan.

Pedersen said he lost all his friends and ballooned to nearly 300 pounds by the end of his freshman year at Lake Zurich High. Surgery damaged his hypothalamus, which helps regulate appetite and metabolism. Other symptoms included impaired vision, short-term memory impairment, mood swings and fatigue. He did poorly at college.

In the past few years, however, he's found an effective cocktail of replacement hormones and medications. He graduated from Harper College, is studying for certification in the IT field and works at the Palatine insurance agency founded in 1952 by his grandfather, Bernard Pedersen, a longtime state lawmaker from Palatine who died in 1996.

The younger Pedersen is activities coordinator at the Magic Foundation's biannual conventions, which can draw up to 500 people. He leads discussion groups and speaks on panels.

"I show them that people can live a normal life on replacement hormones," he said.

Added his mom: "Bernie gives parents confidence that their child can also grow up and live a normal life."

For more information, go to

Thursday, January 8, 2009

Just finished an interview with Barbara, a patient of Dr. McCutcheon. Listen here:

The 2009 People's Health Blogger Award Competition

Congratulations on being among the 10 highest ranked health blogs in the competition.  You are in the running to be the #1 Best Health Blogger!  During the past 2 weeks, we've seen quite a competition among the leaders — several of you have taken and retaken the top positions. As of today, MaryO ( has pulled once again back into the lead, taking over the #1 spot from See Kim W ( Just behind See Kim is golightly (, who overtook Chev ( earlier this week to capture the third position.

The vote counts are close, so you still have the opportunity to improve your ranking, and you could even win the competition.  Many of you with the most votes are supported by friends who posted the "Vote for Me" badge on their blogs and websites.  If you haven't done so already, you might want to ask your friends and colleagues not only to vote for you, but also to post your  "Vote for Me" badge on the sidebar of their blogs and websites. Ask your friends to post your badge code, which they can get from your profile page at   Good luck in the competition!

Wednesday, January 7, 2009

The Medical Treatment of Cushing’s Disease: Effectiveness of Chronic Treatment with the Dopamine Agonist Cabergoline in Patients Unsuccessfully Treated by Surgery

Journal of Clinical Endocrinology & Metabolism, doi:10.1210/jc.2008-1533
The Journal of Clinical Endocrinology & Metabolism Vol. 94, No. 1 223-230
Copyright © 2009 by The Endocrine Society


The Medical Treatment of Cushing’s Disease: Effectiveness of Chronic Treatment with the Dopamine Agonist Cabergoline in Patients Unsuccessfully Treated by Surgery

Rosario Pivonello, Maria Cristina De Martino, Paolo Cappabianca, Monica De Leo, Antongiulio Faggiano, Gaetano Lombardi, Leo J. Hofland, Steven W. J. Lamberts and Annamaria Colao

Departments of Molecular and Clinical Endocrinology and Oncology (R.P., M.C.D.M., M.D.L., A.F., G.L., A.C.), and Neurosurgery (P.C.), "Federico II" University, 80131 Naples, Italy; and Department of Internal Medicine (R.P., L.J.H., S.W.J.L.), Erasmus Medical Center, Rotterdam 3015 CE, The Netherlands

Address all correspondence and requests for reprints to: Rosario Pivonello, M.D., Ph.D., Department of Molecular and Clinical, Endocrinology and Oncology, "Federico II" University, Via Sergio Pansini, 5, 80131 Naples, Italy. E-mail:

Background: The role of dopamine agonists in the treatment of Cushing’s disease (CD) has been previously debated.

Aim: The aim of this study was to evaluate the effectiveness of short-term (3 months) and long-term (12–24 months) treatment with cabergoline in patients with CD.

Patients and Methods: 20 patients with CD unsuccessfully treated by surgery entered the study. Cabergoline was administered at an initial dose of 1 mg/wk, with a monthly increase of 1 mg, until urinary cortisol levels normalized or the maximal dose of 7 mg/wk was achieved. The responsiveness to treatment was evaluated according to changes in urinary cortisol excretion. A decrease greater than 25% was considered as a partial response, whereas complete normalization was considered as a full response at short-term evaluation; persistence of normal cortisol excretion was the only criterion to evaluate the response at long-term evaluation.

Results: After short-term treatment, 15 (75%) patients were responsive to cabergoline treatment. Among these, normalization of cortisol excretion was maintained in 10, whereas treatment escape was observed in five patients after 6–18 months. Among the 10 long-term responsive patients, eight were followed for 24 months, whereas the remaining two were followed for 12–18 months, due to cabergoline withdrawal for intolerance. A sustained control of cortisol secretion for 24 month cabergoline treatment at the maximal dose ranging from 1-7 mg/wk (median: 3.5) without significant side effects, was obtained in eight of 20 (40%) patients.

Conclusions: The results of this study demonstrated that cabergoline treatment is effective in controlling cortisol secretion for at least 1–2 yr in more than one third of a limited population of patients with CD. If this evidence is confirmed by additional studies, this agent may be considered as a useful treatment option in patients with CD who are unsuccessfully treated by neurosurgery.

MicroRNAs Differentially Expressed in ACTH-Secreting Pituitary Tumors


Journal of Clinical Endocrinology & Metabolism, doi:10.1210/jc.2008-1451
The Journal of Clinical Endocrinology & Metabolism Vol. 94, No. 1 320-323
Copyright © 2009 by The Endocrine Society
MicroRNAs Differentially Expressed in ACTH-Secreting Pituitary Tumors
Fernando Colbari Amaral, Natalia Torres, Fabiano Saggioro, Luciano Neder, Hélio Rubens Machado, Wilson Araújo Silva, Jr, Ayrton Custódio Moreira and Margaret Castro

Departments of Internal Medicine (F.C.A., N.T., A.C.M., M.C.), Pathology (F.S., L.N.), Surgery and Anatomy (H.R.M.), and Genetics (W.A.S.), School of Medicine of Ribeirao Preto, University of Sao Paulo, 14049-900 Ribeirao Preto, SP, Brazil

Address all correspondence and requests for reprints to: Margaret de Castro, Department of Internal Medicine, School of Medicine of Ribeirao Preto, University of Sao Paulo, 14049-900 Ribeirao Preto, Sao Paulo, Brazil. E-mail:

Context: MicroRNAs (miRNAs) are small noncoding RNAs, functioning as antisense regulators of gene expression by targeting mRNA and contributing to cancer development and progression. More than 50% of miRNA genes are located in cancer-associated genomic regions or in fragile sites of the genome.

Objective: The aim of the study was to analyze the differential expression of let-7a, miR-15a, miR-16, miR-21, miR-141, miR-143, miR-145, and miR-150 in corticotropinomas and normal pituitary tissue and verify whether their profile of expression correlates with tumor size or remission after treatment.

Material and Methods: ACTH-secreting pituitary tumor samples were obtained during transphenoidal surgery from patients with Cushing disease and normal pituitary tissues from autopsies. The relative expression of miRNAs was measured by real-time PCR using RNU44 and RNU49 as endogenous controls. Relative quantification of miRNA expression was calculated using the 2–{Delta}{Delta}Ct method.

Results: We found underexpression of miR-145 (2.0-fold; P = 0.04), miR-21 (2.4-fold; P = 0.004), miR-141 (2.6-fold; P = 0.02), let-7a (3.3-fold; P = 0.003), miR-150 (3.8-fold; P = 0.04), miR-15a (4.5-fold; P = 0.03), miR-16 (5.0-fold; P = 0.004), and miR-143 (6.4-fold; P = 0.004) in ACTH-secreting pituitary tumors when compared to normal pituitary tissues. There were no differences between miRNA expression and tumor size as well as miRNA expression and ratio of remission after surgery, except in patients presenting lower miR-141 expression who showed a better chance of remission.

Conclusion: Our results support the possibility that altered miRNA expression profile might be involved in corticotrophic tumorigenesis. However, the lack of knowledge about miRNA target genes postpones full understanding of the biological functions of down-regulated or up-regulated miRNAs in corticotropinomas.

Treatment of Pituitary-Dependent Cushing’s Disease with the Multireceptor Ligand Somatostatin Analog Pasireotide (SOM230): A Multicenter, Phase II Trial


Journal of Clinical Endocrinology & Metabolism, doi:10.1210/jc.2008-1008
The Journal of Clinical Endocrinology & Metabolism Vol. 94, No. 1 115-122
Copyright © 2009 by The Endocrine Society
Treatment of Pituitary-Dependent Cushing’s Disease with the Multireceptor Ligand Somatostatin Analog Pasireotide (SOM230): A Multicenter, Phase II Trial
M. Boscaro, W. H. Ludlam, B. Atkinson, J. E. Glusman, S. Petersenn, M. Reincke, P. Snyder, A. Tabarin, B. M. K. Biller, J. Findling, S. Melmed, C. H. Darby, K. Hu, Y. Wang, P. U. Freda, A. B. Grossman, L. A. Frohman and J. Bertherat

Division of Endocrinology (M.B.), Polytechnic University of Marche, 60126 Ancona, Italy; Seattle Pituitary Center (W.H.L.), Swedish Neurosciences Institute, Seattle, Washington 98122; Regional Centre for Endocrinology and Diabetes (B.A.), Royal Victoria Hospital, Belfast BT12 6BA, United Kingdom; Oncology Clinical Development (J.E.G., C.H.D., K.H., Y.W.), Novartis Pharmaceuticals Corporation, East Hanover, New Jersey 07932; Division of Endocrinology (S.P.), Medical Center, University of Essen, 45122 Essen, Germany; Medizinische Klinik Innenstadt Klinikum der Universität München (M.R.), 80336 München, Germany; University of Pennsylvania (P.S.), Philadelphia, Pennsylvania 19104; Service d’Endocrinologie (A.T.), Centre Hospitalier Universitaire Bordeaux, Haut Lévêque, 33075 Pessac, France; Massachusetts General Hospital (B.M.K.B.), Boston, Massachusetts 02114; Midwest Endocrinology Associates (J.F.), Milwaukee, Wisconsin 53215; Cedars-Sinai Pituitary Center (S.M.), Los Angeles, California 90048; Department of Medicine (P.U.F.), Division of Endocrinology, Columbia University, New York, New York 10027; Department of Endocrinology (A.B.G.), St. Bartholomew’s Hospital, EC1M 6BQ London, United Kingdom; Department of Medicine (L.A.F.), Section of Endocrinology, Diabetes, and Metabolism, University of Illinois at Chicago, Chicago, Illinois 60637; and Center for Rare Adrenal Diseases (J.B.), Department of Endocrinology, Institut National de la Santé et de la Recherche Médicale Unit 567, Paris-Descartes University, Cochin Hospital, 75014 Paris, France

Address all correspondence and requests for reprints to: Jérôme Bertherat, Institut National de la Santé et de la Recherche Médicale Unit 567, Institut Cochin, Paris-Descartes University, Assistance Publique-Hôpitaux de Paris, Center for Rare Adrenal Disease, Department of Endocrinology, Hôpital Cochin, 27 rue du Faubourg Saint-Jacques, 75014 Paris, France. E-mail:

Context: There is currently no medical therapy for Cushing’s disease that targets the pituitary adenoma. Availability of such a medical therapy would be a valuable therapeutic option for the management of this disorder.

Objective: Our objective was to evaluate the short-term efficacy of the novel multireceptor ligand somatostatin analog pasireotide in patients with de novo, persistent, or recurrent Cushing’s disease.

Design: We conducted a phase II, proof-of-concept, open-label, single-arm, 15-d multicenter study.

Patients: Thirty-nine patients with either de novo Cushing’s disease who were candidates for pituitary surgery or with persistent or recurrent Cushing’s disease after surgery without having received prior pituitary irradiation.

Intervention: Patients self-administered sc pasireotide 600 µg twice daily for 15 d.

Main Outcome Measure: Normalization of urinary free cortisol (UFC) levels after 15 d treatment was the main outcome measure.

Results: Of the 29 patients in the primary efficacy analysis, 22 (76%) showed a reduction in UFC levels, of whom five (17%) had normal UFC levels (responders), after 15 d of treatment with pasireotide. Serum cortisol levels and plasma ACTH levels were also reduced. Steady-state plasma concentrations of pasireotide were achieved within 5 d of treatment. Responders appeared to have higher pasireotide exposure than nonresponders.

Conclusions: Pasireotide produced a decrease in UFC levels in 76% of patients with Cushing’s disease during the treatment period of 15 d, with direct effects on ACTH release. These results suggest that pasireotide holds promise as an effective medical treatment for this disorder.

Latest Cushing's Newsletter. Read it at

Current Newsletter, January 7, 2009

Read this issue online

Robin (staticnrg) Does SO Much For Us...

Vote for Robin (staticnrg)...and for Cushing's Awareness.  Time to give back!

Please vote for Robin (staticnrg) in  The 2008 Medical Weblog Awards.

Choose her blog "Survive the Journey" at

Addison's HelpA new blog  to promote Addison's awareness.  Find it at
This will contain news items and personal stories about Addison's Disease and other adrenal issues.
If you would like to add your story to this new blog, please contact MaryO

Also in this issue:

Happy New Year!

What's Happening at the Organization?

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings


Cushing's on Facebook

Media - Coming up on TV

Want to Volunteer?

Upcoming Clinical Trial

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

Clinical Trials in Cushing’s Disease

Help Keep The Cushing's Sites Going At No Charge

Endo News: Glands out of synch with body

Endo News: My Life With Cushing's Disease

Endo News: Painful anthology provides therapy for the soul

Endo News: Ask the Doctor at Saint John’s: Minimally Invasive Brain and Pituitary Tumor Surgery

Endo News: Studies on growth hormone release and cortisol with intravenous glucose loading

Endo News: The role of SOX proteins in normal pituitary development

Endo News: Personality in patients with pituitary adenomas is characterized by increased anxiety related traits: comparison of 70 acromegalic patients to patients with non-functioning pituitary adenomas and age- and gender matched controls

New and Updated Helpful Doctors

New and Updated Bios

New Bio January 5, 2009
Randy (burrman)
is from Portland, Maine. He is not yet diagnosed with Cushing's. He saw a news item on Fox News and he thinks his symptoms match Cushing's.

New Bio January 1, 2009
Dina (Dina)
is from Newington, Connecticut. She has recently been diagnosed with Cushing's Disease and plans to have her pituitary tumor removed in the summer.

New Bio December 29
turtledove (turtledove)
is from Hamilton, Ohio. She is not yet diagnosed with Cushing's but she has many symptoms.

New Bio December 28
April (April)
is from Jacksonville, Florida. She is not yet diagnosed with Cushing's but has a PCOS diagnosis.

New Bio December 23
imbolcgirl (imbolcgirl)
is from Ohio. She his not yet diagnosed with Cushing's but has many symptoms.

New Bio December 22
Margaret (Margaret)
is from SW, Virginia. She has recently been diagnosed with Cushing's Disease. She is scheduling an IPSS.

New Bio December 14
Lisann (lisann)
is from St. Louis, Missouri. She is not yet diagnosed with Cushing's but she is testing. She has an adenoma, is a long-time hydrocortisone user and has Graves Disease.

New Bio December 14
is from Bulger, Pennsylvania. Her son was recently diagnosed with Congenital Adrenal Hyperplasia (CAH). She suspects possible adrenal problems with her oldest daughter (age 19) and herself.

New Bio December 12
Natalie (Natalie)
is from Denton, Texas. She is not yet diagnosed with Cushing's but has a PCOS diagnosis. When she was younger her doctors were concerned that she had a pituitary tumor.

Tuesday, January 6, 2009

Returning to TV January 19 - Hypopituitarism: The girl who couldn't wake up
Please vote for Robin (staticnrg): The 2008 Medical Weblog Awards: "Survive the Journey" at
Finally caught up on new Cushing's bios:

Cushing's Clinical Trials


Various Cities : Research Center New!
Cushing's Disease Study CSOM230B2305


Various Cities : Research Center New!
Cushing's Disease Study CSOM230B2305


Various Cities : Research Center New!
Cushing's Disease Study CSOM230B2305


Various Cities : Research Center New!
Cushing's Disease Study CSOM230B2305


Various Cities : Research Center New!
Cushing's Disease Study CSOM230B2305

New York

Various Cities : Research Center New!
Cushing's Disease Study CSOM230B2305


Various Cities : Research Center New!
Cushing's Disease Study CSOM230B2305


Various Cities : Research Center New!
Cushing's Disease Study CSOM230B2305


Various Cities : Research Center New!
Cushing's Disease Study CSOM230B2305


Various Cities : Research Center New!
Cushing's Disease Study CSOM230B2305


Various Cities : Research Center New!
Cushing's Disease Study CSOM230B2305

Glands out of synch with body

This article appears in the print edition of the Irish Times at


CHECK-UP: What happens when the body is exposed to increased levels of cortisol?

A new work colleague has told me she suffers from Cushing's syndrome. I don't want to ask her too many questions but can you tell me what this is and how would she have got it?

Cushing's syndrome is a condition that occurs when the body is exposed to increased levels of a hormone called cortisol. Under normal circumstances, the hypothalamus in the brain triggers a chain of events that causes the adrenal glands to release cortisol into the bloodstream. The adrenal glands, located on the top of the kidneys, usually release only the right amount of the hormone to provide for the body's daily needs.

But problems can arise when signals from the hypothalamus, adrenal glands or other glands such as the pituitary glands are out of synch with what the body needs. This can result in too much cortisol circulating in the blood stream. There are a number of conditions that may precipitate Cushing's syndrome including problems with the adrenal or pituitary glands. It can develop when a person is prescribed medication which influences the amount of the hormone produced by the body or where medication contains cortisol which makes the hormone rise above normal levels.

For some sufferers there is a genetic component to the condition.

What are the symptoms?

Symptoms include upper body obesity, with a characteristic round face and neck but thin arms and legs. Skin problems may develop as can muscle and bone weakness. High blood pressure and high blood sugar may also be a problem. In children with the condition slow growth rates may be noted. Changes in mood such as depression, irritability and moodiness may affect some.

Women with the condition may experience increased hair growth with menstrual irregularities while men may become less fertile and notice a reduced sex drive.

Can it be treated?

The type of treatment prescribed will very much depend on why there is extra cortisol in the body. If the body is making too much cortisol, then treatment may include oral medication, surgery, radiation or a combination of these therapies to reduce these levels.

Where the condition has been caused by the use of medicines containing cortisol to treat another condition, a change of medication may be the answer.

Sunday, January 4, 2009

Webcast: Management of Pituitary Adenomas at

Some ideas for a Better Life in 2009 (from my email)

1. Take a 10-30 minute walk every day. And while you walk, smile. It is a good anti-depressant.

2. Sit in silence for at least 10 minutes each day.

3. Tape your late night shows and get more sleep.

4. When you wake up in the morning decide what you will do,
'My purpose today is to __________.'

5. Live with 3 E's -- Energy, Enthusiasm, and Empathy.

6. Play more games and read more books.

7. Make time for meditation and prayer.  They provide us with daily fuel for our busy lives.

8. Spend time to absorb the wisdom and enthusiasm of people over the age of 70 and under the age of six.

9. Dream more while you are awake.

10.  Eat more foods that grow on trees and plants.  Eat less food that is manufactured in plants.

11. Drink green tea and plenty of water.  Eat blueberries, wild Alaskan salmon, broccoli, almonds & walnuts.

12. Try to help at least three people smile today.

13. Clear clutter from your house, your car, and your desk.  Let new and flowing energy into your life.

14. Don't waste precious energy on gossip, or issues of the past, negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.

15. Realize that life is a school and we are here to learn. Problems are simply part of the curriculum that appear and fade away like algebra class did. But the lessons you learn will last a lifetime.

16. Eat breakfast like a king, lunch like a prince and dinner like a college kid with a maxed out charge card.

17. Smile and laugh more.

18. Even when life is not fair, it's still good.

19. Life is too short to waste time in negative thoughts, actions or energy.

20. Don't take yourself seriously.

21. You don't have to win every argument. You can agree to disagree.

22. Make peace with your past so it won't spoil the present.

23. Don't compare your life to others'. You can only guess at what their trials may be.

24. You are in charge of your happiness.

25. Greet so-called "disasters" with this question: 'In five years, will this matter?'

26. Forgive everyone.

27. Dwelling on what other people may think of you is a waste of time and energy

28. REMEMBER GOD heals every wound.

29. However good or bad a situation is, it will change

30. Your job won't take care of you when you are sick.  Your friends and family will.  Stay in touch.

31. Get rid of things that are not useful, beautiful or joyful.

32. Envy is a waste of time.

33. The best is yet to come.

34. No matter how you feel, get up, dress up and show up.

35. Do the right thing!

36. Call your family often. (Or email them)

37. Each night complete the following statements:
I am thankful for __________ today.
Today I accomplished _________.

38. When you are stressed, remember that you are also blessed.

39. Enjoy the ride. This is not Disney World and you don't want to rush through it. Be thankful for this ride through life; enjoy the ride and make the most of it


Thanks, Tom :)