Thursday, February 26, 2009

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

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

From http://www.ingentaconnect.com/content/bsc/cend/2009/00000070/00000003/art00015

Authors: Arnold, J. R.; Arnold, D. F.; Marland, A.; Karavitaki, N.; Wass, J. A. H.

Source: Clinical Endocrinology, Volume 70, Number 3, March 2009 , pp. 435-438(4)

Publisher: Blackwell Publishing

 

Abstract:

Summary

Background

Subjects with non-functioning pituitary adenomas (NFAs) frequently develop GH deficiency due to tumour expansion or as a consequence of tumour therapy. The safety of GH replacement (GHR) in these individuals remains unclear.

Objective

To assess the effect of GHR on tumour recurrence in patients with NFAs solely treated by surgical removal.

Patients and methods

The study involved all patients with NFA who presented to the Department of Endocrinology in Oxford between January 1989 and July 2005 and were treated solely by surgical removal of the tumour. Patients with follow up < 1 year were excluded. Recurrence was diagnosed on the basis of radiological appearances (detectable tumour after gross total removal or regrowth of pre-existing residue) on regular imaging surveillance.

Results

One hundred and thirty patients were included in the study, and were followed up for a mean period of 6·8 ± 4·2 years (median 5·7, range 1·2-17·6). Twenty-three patients received GHR [16 male, 7 female, mean age at tumour diagnosis 53·7 ± 14·6 years (range 20-80)]. The mean duration of GHR was 4·6 ± 2·5 years (median 5·3, range 0·4-8·7). One hundred and seven subjects did not receive GH therapy [61 male, 46 female, mean age at tumour diagnosis 56·2 ± 14·0 years (range 20-87)]. Tumour regrowth occurred in 38 non-GH treated subjects (36%) and 8 GHR subjects (35%). Regrowth was detected at a mean of 4·8 ± 2·8 years (range 1-11 years) in the non-GH treated group, and at 6·5 ± 2·3 years in the GHR group. In the GHR group, recurrence occurred after a mean of 2·9 ± 2·2 years (range 0·4-5·9 years) following commencement of GH treatment. The Cox regression analysis showed that after adjusting for sex, age at tumour diagnosis, cavernous sinus invasion at diagnosis and type of tumour removal (partial or complete based on postoperative scan), GH treatment was not a significant independent predictor of recurrence (P = 0·09; hazard ratio = 0·51; 95% CI, 0·24-1·12).

Conclusion

GH replacement in patients with NFA treated by surgery alone is not associated with an increased risk of tumour recurrence.

Document Type: Research article

DOI: 10.1111/j.1365-2265.2008.03391.x

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

$42.40 plus tax

Interview with Tammie (makeitgreen), Tonight at 7:30PM eastern

Interview with Tammie (makeitgreen) tonight at 7:30OM Eastern at http://www.blogtalkradio.com/CushingsHelp

How can I convert to my Time Zone? Go to: http://www.globalmetric.com/time . The Call-In number for questions or comments is (646) 200-0162.

In her bio, Tammie writes:

I am a 39 year old married mother of two children ages 5 and 6 and have had hormonal issues since childhood. I stumbled upon this site in search of information, support, and ideas on how I can improve my quality of life while I search for a good endo and get a proper diagnosis.

In elementary school, my poor parents didn't know what to do with me. I forgot everything and must've driven them crazy. I got lots of spankings for fogetting things. My hair grew slow, and I was short and tiny for my age. As I got older, I did not develop breasts or get my period until I was 17. The next one was 9 months later. Looking back, this was probably the first REAL clue that I was having hormonal issues. I've NEVER had regular cycles, even as an adult, unless I'm taking birth control meds.

When I graduated high school, I weighed 103 lbs.
As a young adult, I did finally develop and my "pooch" ~ that little fat on the midsection ~ started growing. It was slow and gradual, nothing alarming, and I was still tiny. I took birth control pills throughout my 20's in order to have regular periods. During that time in my life, the hormonal imbalance was minimally disturbing, and an unofficial diagnosis of PCOS was all I needed to know. I did what the doc said, that is, I took my BC pills and everything else was pretty much normal.

Around 30 I married and wanted to have children so I went off the birth control meds and started seeing an Endo. I was officially diagnosed with PCOS after having an ultra sound that showed the tell-tale pearl-like string of cysts in both ovaries. He put me on glucophage, the newest, most exciting clinical treatment at the time. Glucophage made me nauseated and gave me diarrhea and did not help me with infertility. In fact, I think all it did was make me sick to my stomach and I gained weight while taking it. After a few months of this treatment, I got disgusted that the Endo was not helping me and that I was only one of his guinea pigs for his clinical study on the effects of glucophage, so I started looking for a new doc. His only requirement was that he agreed on the phone that he would prescribe clomid.

Clomid worked like a charm. By following a calendar, I planned the next months around my cycle and got pregnant the second month I was on clomid. We were thrilled! Of course, the pregnancy brought my hormonal imbalances to the surface and I developed insulin dependant gestational diabetes. I had two children and was insulin dependent with both.

After my second son was born, I began to have symptoms of depression and fatigue. I slept all the time and cried alot. The doctors put me on thyroid meds because it was low, and over time, welbutrin and provigil, which both helped, but were masking the real problems. When I moved, I had to see a new psychiatrist who decreased my provigil and tried to diagnose me with manic depression. He wanted to put me on yet another psychotrophic drug. That was the day I quit taking all my meds.

Over the next couple of months, my depression returned and I had absolutely no energy. I went to my GP and told him everything. I wrote it all down in bullet format and told him that I thought I had a hormonal imbalance since childhood. He's truly been great, but he's sooooo SLOOOOWWWW. He will only check my bloodwork every 6 weeks, and increases my thyroid by only 30 mg each time. The last time I had bloodwork done, my thyroid was low, but he had his nurse call me and tell me it was normal and would NOT increase my meds.

This made me extremely depressed! If my bloodwork was normal, then why the hell did I feel so rotten? And why was I getting more and more tired and dizzy every day? I made an acute care appointment with the next available doctor and she basically laughed me out of the office. I went home, cried alot, did some research and went out and bought: St. John's Wort, DHEA, a stress vitamin loaded with vitamin b's, iodine (kelp), and a multivitamin. I took all those along with my thyroid meds for two days, and got so sick and dizzy that I went in for another acute care appointment. This doc also basically laughed me out of her office (actually, she was clearly PISSED OFF that I came in again for the same thing) and told me to go to ER.

I did go to ER, that was two days ago, and they diagnosed me as having vertigo!

I will post updates as they are available, since I live only 2-3 hours from some of the doctors noted on this site, I will be going to see one of them soon. Honestly, at this point I don't even care if my insurance will pay or not. Somehow, I'm going to get help from someone who actually believes I have something wrong.

Monday, February 23, 2009

Pituitary Patient Symposium at Swedish Medical Center May 9


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 17th 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

Posted via email from Cushings Help

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 17th 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

Sunday, February 22, 2009

Diagnosis of rare disease brings area woman hope

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

By JOSELLE SYRACUSE

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

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

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

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

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

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

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

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

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

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

Joselle Syracuse is a Fredonia resident who teaches in Jamestown. 

Read her bio on the Cushing's Help website

Listen to her live Cushing's Help Interview

Friday, February 20, 2009

The Internet can be a wonderful place But...

...sometimes it can lead you down paths you don't want to/shouldn't go.

I started this post a few days ago and couldn't continue.

I follow the blog of a woman who is dying of "my" cancer.  She's doing it with grace and dignity.  Her friends and family are leaving wonderfully supportive comments.  She seems to be so loved - by everyone.

It makes me wonder about how it will be for me.  I don't have that many real life friends and very little family.

I remember being a college student when my Nana died.  The family - my step-granddad, my father, my mom and I - sat for hours at the calling hours and no one came.  Same with the funeral.  Just us, and a minister.

How sad is that?  To live your whole life and at the end there's no one?

~~~~~~~~~~~~~~~~~~~~~~

On another completely different note, one of the message boards I participate in recently asked the question of whether the members still felt pretty.

That raised a whole can of worms for me.  I have never, ever felt pretty.  Even when I was a kid and your parents are supposed to think you're cute, my family let me know that I was fat and ugly. 

When by a fluke of teenage nature I was going to a prom and showing off my dress my grandmother only said that I'd inherited the family moles.  Not even that the dress was nice.  Just another of my imperfections.

~~~~~~~~~~~~~~~~~~~~

So...I've been depressed for about a month now.  I'm feeling overwhelmed, overworked, under appreciated.  I'll never, ever, catch up with the web work that I need to do.

Every day there are would-be hackers posting on the message boards and other ones signing up for another of the Cushing's sites to do God-knows -what kind of damage as members there.

New bios, newsletters - no time or energy to do those.

Non-profit - I need to put together a resume and recreate all the past years financial records as well as guess what will be in the future.

All I want to do is sleep.

What have I gotten myself into?

No comment but...

I hope this isn't typical of your current nursing school graduate!

She (I'm assuming it's a she) is planning to move to NYC after graduation because it's more money to start with.

Good luck, NY Cushies and Addisonians!

http://melonmonster.livejournal.com/10497.html

i've wanted to become a vet all of my life, but i firmly believe a career as an rn will only help me.  there are so many 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, your face is swollen ("moon face"), your torso is obese, and your legs and arms are sticks.  very disproportionate. 


addison's is the opposite: underproduction of cortisol.  a person will be very skinny and gaunt, and look like they have a thyroid issue because their eyes are all bugged out.  i think hands and feet swell, can't remember.  regardless, these are actually somewhat popular diagnoses in animal medicine with dogs.  or at least one of the vets i used to work for thought every dog had one or the other.


i just can't wait to graduate and wear all of my cute scrubs.  i'll take pictures lol.

Tuesday, February 17, 2009

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

http://www.endocrinetoday.com/view.aspx?rid=37104

After 15 days of treatment with pasireotide, 76% of patients with Cushing’s disease experienced a decrease in urinary free cortisol levels.

The researchers conducted a phase-2, open-label, single-arm study to evaluate the short-term efficacy of pasireotide (SOM230), a novel multireceptor ligand somatostatin, in 39 patients with Cushing ’s disease. They assigned patients to self-administered 600-mcg pasireotide twice per day for 15 days.

The main outcome measure — normalization of urinary free cortisol levels — was reached in five of 29 patients (17%) with Cushing’s disease who were included in the primary efficacy analysis. Mean urinary free cortisol levels decreased by 44.5% during the study period, from 1,231 nmol per 24 hours at baseline to 683 nmol per 24 hours at day 15. Patients who had normalization of urinary free cortisol levels had higher plasma glucose exposure to pasireotide compared with patients who did not reach normalization.

Pasireotide was also associated with reductions in serum cortisol and plasma adrenocorticotropic hormone levels. Seven patients had increased urinary free cortisol levels at day 15 compared with baseline, four of whom also experienced decreases in ACTH AUC. Five days of treatment produced steady-state concentrations of pasireotide. Safety analysis revealed that pasireotide was well tolerated; the most common adverse events were gastrointestinal disorders (54%), such as diarrhea (44%), nausea (23%) and abdominal pain (18%).

J Clin Endocrinol Metab. 2009;94:115-122.

Stress for Success: Stress hormone may increase appetite, weight gain

From http://www.news-press.com/article/20090217/HEALTH/902170314/1013/LIFESTYLES

Jacquelyn Ferguson
Special to news-press.com

When stressed, even when simply thinking stressful (angry/fearful) thoughts, you trigger your body's physiological fight/flight reaction. The most potentially damaging of the 17 hormones that are part of this stress response is cortisol, a glucocorticoid.

One of cortisol's roles during stress is to provide your body with energy. So, stress might lead you to eat more due to an increased appetite. The fuel your muscles need during the fight/flight response is sugar, so you crave carbohydrates when stressed.

"During the first couple of days following a stressful event, cortisol is giving you a cue to eat high-carbohydrate foods," says endocrinologist Ricardo Dr. Perfetti, M.D., Ph.D., of Cedars Sinai Medical Center in Los Angeles. "... you (can) quickly learn a behavioral response that you feel almost destined to repeat anytime you feel stressed."

This was adaptive for our ancestors because they actually physically fought or fled from, say, attacking beasts. But we modern humans have to apply the brakes to our stress energy to keep from punching someone out or running away from them, sending stress hormones coursing through our bodies.

When you're stressed over anything your body doesn't know that you're not physically fighting or fleeing, so it still responds with the hormonal signal to replenish nutritional stores, making you feel hungry. The resultant extra eating may cause weight gain.

So, cortisol has become the newest excuse for packing on the pounds. However, research disagrees on whether excessive cortisol actually causes weight gain and fat deposits in your abdominal area.

Some research shows that abdominal fat causes chemical changes that can lower metabolism and increase cravings for sweets, possibly leading to additional weight gain. However, Mayo Clinic dietitian Katherine Zeratsky doesn't believe that the amount of cortisol produced by a healthy stressed person is enough to cause weight gain.

She says that stress causes you to accumulate excess fat only when your body produces large amounts of cortisol due to side effects of medication or an underlying medical condition like Cushing's syndrome.

Others, like Dr. Caroline Cederquist, board certified family and bariatric physician the majority of whose patients have abdominal weight issues, believes our high stress lifestyles create cortisol-induced symptoms, including abdominal weight gain. This can also lead to higher cholesterol and blood sugar levels and elevated blood pressure, all factors for heart disease.

The research on the role of cortisol in obesity remains speculative. Blaming weight gain on stress ignores the possibility that you've developed a habit of eating in response to stress, a learned habit encouraged by brain chemistry that can be unlearned. Future research should settle this question. In the meantime, lower your stress, eat healthfully, exercise and avoid giving into the temptation of carbohydrates when stressed.

Here's the bottom line to weight loss. It always has been, which suggests it always will be - until a miracle weight loss treatment is invented. There are two ways to lose weight: eat fewer (and better) calories and burn more of those calories by moving your body more. Period.

Sunday, February 15, 2009

What's Wrong with Me? Sharmyn's Story

Download now or preview on posterous
WomansDay_Article.pdf (2395 KB)

MaryONote: This article has been on the main site at http://www.cushings-help.com/media_sharmyn.htm for many years but the original link to the Woman's Day article is broken so I'm including the PDF file at the end of the article. Since this article came out, Sharm has also been the subject of some TV shows and appears in YouTube videos.

Here's one:

Women's Day, March 9, 2004 issue

What's Wrong with Me?

I'd never heard of Cushing's disease, until it was revealed as the culprit behind my mysterious illness

By Sharmyn McGraw
Photographed by Brett Panelli

What's Wrong with Me?For years I was a size two. I worked hard to maintain my weight by exercising and eating a healthy diet—I even had a personal trainer. But in 1993, at the age of 31, my body rapidly changed. In four days I gained 11 pounds, and by six months it was 85. I tried eating less and working out more, but my weight just kept going up.

One year and 100 extra pounds later, my appearance was drastically changed. With most of the weight centered around my stomach, I looked as if I were pregnant with twins. My face and chin were round and the back of my neck had a buffalo hump. On top of it all, my thick blond hair began falling out in handfuls.

The anxiety and depression were nearly unbearable. I was a 31-year-old woman with a 227-pound body living in Newport Beach, California, a town south of Los Angeles where there's no such thing as being too thin. Obesity just does not exist, especially among my peers. As an interior designer, I was often invited to social events, but I was so embarrassed by my appearance that I started avoiding them.

What was going on inside my body was just as troubling. I felt as if I'd had a triple espresso on an empty stomach. I was flying at top speed with constant jitters and chronic indigestion, rarely sleeping more than two hours a night. Mentally and physically, I was exhausted.

Searching for an Answer

While my girlfriends were busy planning their weddings and starting their families, I went from doctor to doctor hoping that someone would figure out what was wrong with me. In seven years, I sought help from more than 15 highly recommended physicians, as well as nutritionists, psychotherapists, an acupuncturist and a naturopath. Pleading my case as if I was on trial for a crime I did not commit, my closing argument was always the same: "I eat a healthy diet and exercise fanatically. This rapid weight gain, anxiety and depression is completely out of my nature."

Nearly ever doctor I saw, convinced that I was a compulsive overeater with a mood disorder, simply offered advice on dieting and exercise. "Maybe you just think you work out as often as Jane Fonda," was one physician's comment.

One doctor labeled me a hypochondriac, and another said I had too much yeast in my system. Over the course of seven years, I also heard that I had fibromyalgia, a spastic colon, acid reflux and a sleep disorder, was prediabetic and premenopausal. I endured painful and expensive medical tests, including two endoscopies, a colonoscopy, a bone marrow biopsy and multiple CAT scans and ultrasounds. I had my thyroid removed and ankle and knee surgery (due to the excess weight on my joints).

During this time, with my family living far away in Illinois, I relied on my friends for support. Many of them were helpful, but some just continued to drop subtle hints about the latest diets they had read about. As for having a relationship—anxiety, chronic muscle pain and uncontrollable diarrhea were just a few of the reasons I stopped dating completely.

As days turned into years, I knew my symptoms were getting worse. My mind was no longer sharp and quick, and I stuttered to complete even simple sentences. I was not sure how much more I could endure, but I was determined that my obituary would not read, "Obese woman dies of unknown causes."

I gathered all of my medical records and went to work studying every line. I found there was just one thing almost every doctor agreed on: My cortisol level was too high. In fact, it was three times the normal level for this hormone, yet none of the doctors felt that it had anything to do with my laundry list of complaints. By this point, I was fairly certain that it did.

Borrowing a friend's computer, I went on the Internet and typed in the word "cortisol." Up popped an article on Cushing's syndrome, a hormonal disorder caused by excessively high blood levels of cortisol, and there on the screen were every one of my symptoms. I couldn't believe it! Had I possibly diagnosed myself seven long years after my symptoms began?

Suddenly I remembered that I had seen the word "Cushing's" in a report from a clinic I'd been to four years earlier. Ironically, the doctors had ruled it out because my eyes weren't yellow and I didn't have mouth sores. Now my next step was to convince a doctor that I had this disease.

Finally, a Diagnosis!

I'll never forget the day I was ushered into the office of endocrinologist Andre Van Herle, M.D., at UCLA Medical Center. I was prepared to once again plead my case. But without knowing anything about me, he simply shook my hand and said, "So you are here because you have Cushing's."

This was a doctor with more than 40 years of experience in diagnosing people with the syndrome, and he knew at first glance that I had the physical appearance of someone with the disorder. It was one of the happiest days of my life. I was overwhelmed with emotion, and tears streamed down my face. Most importantly, I realized I was not crazy and someone was willing to help me.

Dr. Van Herle and his colleague, Pejman Cohan, M.D., soon confirmed through blood tests that I did have Cushing's syndrome. In my case, as in about 70 percent of cases, the problem was a tumor in my pituitary gland that was causing the overproduction of the hormone adrenocorticotropin (ACTH). This hormone stimulates the body's adrenal glands to produce cortisol, the life-sustaining "fight or flight" hormone, which has many important functions. High amounts of cortisol, however, can wreak havoc, causing rapid weight gain, upper-body obesity, a rounded face, increased fat around the neck, anxiety and depression. Over time, abnormally high levels can even be life-threatening.

The next step was surgery to remove the tumor in my pituitary, located at the base of the brain, but there was one more obstacle. Although my hormone levels indicated I had a tumor, it was apparently so small that it wasn't picked up on an MRI. So there was a chance that my surgeon, Daniel Kelly, M.D., director of UCLA's Pituitary Tumor and Neuroendocrine Program, wouldn't be able to locate it. Thankfully, he didn't encounter that problem. On April 14, 2000, Dr. Kelly was successful in removing the tiny tumor though an incision in the back of my nasal cavity.

Today, four years later, I am 100 percent cured, and my body and mind are finally free from the horrible effects of Cushing's. I've been able to lose 40 of the 100 pounds that I gained and am confident I can lose the rest. As a volunteer, I help facilitate a UCLA pituitary tumor support group, and I recently spoke to medical students at UCLA School of Medicine, explaining my difficulties obtaining a correct diagnosis. Looking back over nearly 10 years, it's painful to think about all that I've been through. But I am so proud of myself for never giving up. I hope my story will help encourage and empower other women to do the same.

Sharmyn McGraw is a member of the Cushing's Help and Support Message Boards.

Posted via email from Cushings Help

Hair, Hair, Go Away!

From http://www.sundaytimes.lk/090215/MediScene/sundaytimesmediscene_07.html#

What causes hirsutism?

Conditions that can cause high androgen levels include:

Polycystic ovary syndrome (PCOS): Caused by an imbalance of sex hormones, this common condition can result in irregular periods, obesity, infertility and sometimes, multiple cysts on your ovaries. Insulin resistance is also commonly associated with PCOS, and so diabetes is among the conditions that can be linked with hirsutism. Polycystic ovary syndrome is the most common identifiable cause of hirsutism.

Cushing's syndrome: Cushing's syndrome is a condition that occurs when your body is exposed to high levels of the hormone cortisol, a steroid hormone involved in your body's response to stress. It can develop when your adrenal glands - small hormone-secreting glands located just above your kidneys - make too much cortisol, or it can occur from taking cortisol-like medications over a long period. Increased cortisol levels disrupt the balance of sex hormones in your body, which can result in hirsutism.

Tumours: Rarely, the cause of hirsutism may be an androgen-secreting tumour in the ovaries or adrenal glands.

Medications: Some medications such as phenytoin danazole testosterone and glucocorticoids can cause hirsutism.

It's Nice She's Getting The Word Out But...


...it would be nice if facts were checked first.  Both in the description of the video and in captions throughout from the CNBC interview, it says that the subject had "Cushings disease that created a brain tumor" rather than that she had a pituitary tumor that caused her Cushing's.

Oh well.  Maybe Ms. Perkins-Rawle will help people learn about Cushing's who were unaware of this debilitating disease.  THEN they, and she, can learn which comes first - the tumor or the disease.

Carol Perkins-Rawle on The Big Idea on CNBC part 1

Founder and Owner of Harry Barker talks about her international modeling days, her struggles with Cushings disease that created a brain tumor, which then inspired her to create Harry Barker.

Posted via email from Cushings Help

Saturday, February 14, 2009

Happy Valentine's Day~

 

 

I wonder If These Folks Have Ever Met A Cushie

From http://emergencyrequirement.blogspot.com/2009/02/cushings-syndrome.html

Cushing's Syndrome

What is Cushing's Syndrome?

Cushing’s syndrome is a condition that occurs when a person’s body is exposed to too much of the hormone cortisol.

What causes Cushing's Syndrome?

Cushing’s syndrome happens for two reasons:

  1. Medication either causes the body to make too much cortisol, or the medication itself contains extra cortisol and taking it pushes the level above normal.
  2. A person’s body makes more cortisol than it needs

Normally, the hypothalamus in the brain triggers a chain of events that causes the adrenal glands to release cortisol into the bloodstream. When everything is working correctly, the body is balanced, releasing the right amount of cortisol for daily needs. But problems with the adrenal glands, pituitary gland, or hypothalamus can cause the glands to make too much cortisol.


Conditions that might cause the body to make too much cortisol include:

  • Pituitary tumors
  • Ectopic ACTH syndrome
  • Adrenal tumors
  • Familial (genetic) Cushing's syndrome

What are the symptoms of Cushing's Syndrome?

Common symptoms of Cushing’s syndrome can include:

  • Upper body obesity, round face and neck, and thinning arms and legs
  • Slow growth rates in children
  • Skin problems, such as acne or reddish-blue streaks in the skin
  • High blood pressure
  • Muscle and bone weakness
  • Moodiness, irritability, or depression
  • High blood sugar

Women may also have increased growth of hair on their face and body and experience menstrual irregularities. Men may become less fertile and have a reduced or absent sex drive.

What are the treatments for Cushing's Syndrome?

Treatment for Cushing’s syndrome depends on the reason for the extra cortisol in the body. If it is caused by the use of medicine to treat another disorder, a health care provider can reduce the dose or change the medicine.

If the body is making too much cortisol, treatments may include oral medication, surgery, radiation, or a combination of these treatments.

In most cases Cushing’s syndrome can be cured.

MaryO'Note - How about all the people on the boards who have not been cured?  What would they think about that last line?

What do the authors of this post know that doctors don't seem to? ~ "Familial (genetic) Cushing's syndrome"

What about the debilitating fatigue? The bruising? 

How come they didn't mention the buffalo hump and other symptoms we seem to get?

What about the folks on steroids who stop but the symptoms never go away?  Reducing or changing the medication doesn't always work.

Neither does oral medication to reduce cortisol, at least not yet.

Seems like the original post was kind of simplistic or maybe I know far too many real-life Cushies.

It is nice that the word is getting out, though!

Pituitary Alerts from Google

DocrtorsTube: Transseptal Transsphenoid Removal of Pituitary Tumor
By Doctor house
Transseptal Transsphenoid Removal of Pituitary Tumor. Posted by Doctor house. Labels: C.N.S Surgery, E.N.T · Older Post Home. DoctorsTube Search. Labels. Anatomy (38) · Andrology (6) · Animation (19) · Asbestos And Methothelioma (1) ...
DocrtorsTube - http://doctorstube.blogspot.com/

Kibbey CT/MRI Procedures & Pathology: Pituitary Adenomas
By Stephanie Kibbey
A pituitary adenoma is a tumor which is found in the pituitary gland. These tumors are sometimes only found during autopsy because they are often asymptomatic (unless invasive or classified as a macroadenoma - which is greater than 1.0 ...
Kibbey CT/MRI Procedures & Pathology - http://kibbeyctprocedures.blogspot.com/

Friday, February 13, 2009

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/

But...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, and thanks to Gina for putting up with us disappearing and reappearing!

Thursday, February 12, 2009

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

Tuesday, February 10, 2009

Amazing Kimberly (Adrenal Cushing's)


MaryO'Note: This video was kindly sent to me by Kimberly's husband.  He did such a beautiful job putting her images into a video with music.  This is another great way to help get the word out about Cushing's. Thanks, Randall!

"The amazing story of Kimberly, whose health began to deteriorate in 1999. A number of unrelated symptoms, including substantial weight gain and fatigue, baffled doctors for over 5 years. She was finally diagnosed with Cushings syndrome in 2005. This video shows her miraculous transition battling through this disease, regaining her health and beauty."

Posted via email from Cushings Help

Friday, February 6, 2009

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

Thursday, February 5, 2009

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

Tuesday, February 3, 2009

Corcept Therapeutics Announces Positive Results From Study of CORLUX - Quick Facts

from http://www.rttnews.com/ArticleView.aspx?Id=841403&SMap=1

Corcept Therapeutics Inc. announced positive results from a clinical study that tested whether CORLUX mitigates the weight gain associated with Risperdal. The results confirmed the results that were previously reported from similar clinical studies of CORLUX, which demonstrated statistically significant mitigation of Zyprexa associated weight gain.

The data demonstrated that adding CORLUX to Risperdal treatment in healthy subjects resulted in a statistically significant reduction in weight gain compared to that seen in subjects receiving Risperdal alone.

Risperdal, a leading antipsychotic for the treatment of schizophrenia and bipolar disorder, is marketed by Johnson & Johnson. CORLUX is Corcept's late-stage GRII receptor antagonist, which the company is also evaluating in ongoing Phase 3 trials for psychotic depression and Cushing's Syndrome.

King Henry Might Have Had Cushing's(?)

From http://www.dailymail.co.uk/news/article-1134222/King-size-Henry-VIIIs-armour-reveals-52in-girth--paid-terrible-price.html

By Philippa Gregory
Last updated at 9:55 PM on 02nd February 2009

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

He was an immense figure in the history of England. Just how immense, however, has finally been revealed after a study of his body armour exposed Henry VIII's extraordinary vital statistics.

It found that by the end of his reign the 6ft 1in Tudor king had a whopping 52in waist and 53in chest - enough to make him severely obese by modern standards.

The study by the Royal Armouries coincides with a forthcoming exhibition of his supersized battle dress at the Tower of London to mark the 500th anniversary of him taking the throne. Here, Philippa Gregory reveals the heavy price he paid for being a very tubby Tudor.

He was a lithe and handsome lothario who went on to acquire a truly legendary waistline.

Until now, however, we haven't quite appreciated just how much larger than life Henry VIII really became.

But as we approach the 500th anniversary of his coronation, new research by the Royal Armouries in Leeds reveals the full scale of his gargantuan girth.

Analysing his suits of armour, many of which will be brought together in a new exhibition at the Tower of London in April, the researchers discovered that by the final years of his life, the 6ft 1in Tudor boasted a whopping 52in waist.

In other words, the one-time royal pin-up was now barely taller than he was round.

henry Viii

New research has shown that by the age of 45, Henry VII's weight had started to balloon as he suffered increasingly from chronic constipation and his body succumbed to hideous sores and repeated infections

Of course, years earlier, life had started rather well for young Hal.

The twentysomething Henry VIII was tall, muscle-bound and supremely fit - a talented athlete and a courageous jouster at the grand tournaments of the age.

His armour from that period reveals some impressive dimensions: a 32in waist and a 39in chest.

According to the Venetian Ambassador, he was 'the handsomest potentate I ever set eyes on, with an extremely fine calf to his leg . . . and a round face so very beautiful that it would become a pretty woman'.

But not even Henry, who believed himself directly favoured by God, could stay young for ever.

Indeed, physically and mentally, the final 15 years of his life saw the most astonishing deterioration.

The golden Prince Hal became old, very likely mad  -  and monstrously fat.

By his late 40s, he measured 48 inches around the middle and soon expanded to the colossal measurements of his twilight years.

Peter Armstrong, the director of the Royal Armouries, describes him simply as 'an absolute monster'.

Not that you would have known that from his portrayal by Jonathan Rhys Meyers in the recent hit TV series The Tudors.

The final episode reached the mid-1530s, which meant that Henry was in his mid-40s and courting his future third wife, Jane Seymour, while still married to his second, the doomed Anne Boleyn.

Expanding waistline: A suit of armour worn by the king in his early 20s

Suit of armour worn by King Henry VIII approximately 1540

Expanding waistline: A suit of armour worn by the king in his early 20s, left, is noticeably slimmer than one he used in about 1540, right

But Rhys Meyers looked as slim and fresh-faced as he had at the start of the first series.

In the 16th century, the life expectancy of the average man was 45.

As for Henry, the new research confirms, by this age his weight had started to balloon as he suffered increasingly from chronic constipation and his body succumbed to hideous sores and repeated infections.

Mentally, he was also beginning to show the first signs of madness.

However, he probably did not have syphilis, as is often alleged. Nor is there any record of him being prescribed mercury, the highly toxic metal that was used to treat the disease.

But he may have had Cushing's syndrome (a rare hormonal disorder) which could account for the obesity and the mental instability.

And there were a host of other problems, too. I would think it likely that Henry was also experiencing bouts of impotence during his marriage to Anne Boleyn; certainly, she is said to have complained of such a problem to her brother.

And while he successfully sired a son  -  the future Edward VI  -  with Jane, he never managed intercourse with wife number four, Anne of Cleves.

Not surprisingly, his next marriage  -  to the young and sexually active Catherine Howard  -  was said to have rejuvenated and exhausted him. But she was executed by him for no good reason other than malice in little over a year.

By this time, the King weighed more than 20st, was enduring regular and very painful enemas and had a foul-smelling open wound on his leg that the royal physicians  -  based on the then accepted medical knowledge  -  refused to let heal, believing that illness must be allowed to flow out of the body.

Whenever it threatened to close up, the wound would be cut open, the flesh pulled apart and tied open with string and the abscess filled with gold pellets to keep the sore running.

henry viii

Jonathan Rhys Meyers played Henry VIII in the hit TV series The Tudors

The constant pain must have been unimaginable and certainly goes some way to explaining the legendary royal rages that characterised Henry's later years.

Armed with modern medical knowledge, historians now believe this wound, which marked the onset of Henry's long decline into chronic ill health, was the result of a varicose ulcer he developed on his left thigh in his mid-30s, probably brought on by his habit of wearing tight garters on his famously handsome legs.

Alternatively, it could have been caused by a condition called chronic osteitis, a bone infection that certainly fits reports of constant ulcers opening up.

In 1536, Henry also suffered a particularly nasty fall from a horse while participating in one of the tournaments he so enjoyed. He was unconscious for about two hours  -  a period long and worrying enough for Anne Boleyn later to blame for the miscarriage she suffered soon afterwards.

Some medical historians now believe his head injury was severe enough to cause permanent brain damage.

Certainly, from that time, Henry's furious temper and unpredictability got even worse.

He would issue orders in the morning and then countermand them in the afternoon  -  then plunge into an ever darker rage on discovering his instructions had already been carried out.

My own research makes me believe that some sort of brain damage also goes a long way to explaining his persecution of Anne Boleyn  -  accusing her of adultery (not with just one man but five), witchcraft, treason and even incest, and then insisting on her execution when almost everyone, Anne included, expected her to be granted a royal pardon.

Typically, at the hour of the execution of the woman he had so adored, the King was dancing with Jane Seymour.

Just a few years later, in 1540, the onset of madness could also explain the savage humiliation and botched execution (carried out by a nervous teenager with a blunt axe) of Thomas Cromwell, once the King's closest adviser.

Within months, Henry bitterly regretted the execution  -  an irrational about face that was becoming all too common. By this time, Henry was becoming a tyrant.

In writing my historical novels, I apply very strict rules of accuracy to facts when they are known. But when it comes to Henry VIII, there's just no need to invent or significantly change events to improve the story.

We are faced with this extraordinarily charismatic king who married six times, who broke with the Roman Catholic Church and then went mad, all before his death at the age of 55.

Indeed, it is the question of human mortality that makes history so interesting.

The true story of Henry VIII is a parable of the corruption of power and the frailty of the body. He got old, he became disgusting and dangerous and he grew enormously fat.

But in many ways, England's most enigmatic king remains all the more interesting for his viler features.

Philippa Gregory is author of The Other Boleyn Girl (HarperCollins).

* Henry VIII: Dressed to Kill opens to the public on April 3 at the Tower of London.

Sunday, February 1, 2009

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!

5lousybucks 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.