Shauna

I really, really like the license plate frame!!  I think that would be a great thing - some kind of quip (like "Weight gain, tired, bruised - it might be a disease and not laziness") with Cush.or and our toll free # on it.

My visor is in the mail, got the notice yesterday!  I also like the apron.

Got my visor today.  Going to be stylin'.

I'm up for answering the hotline, any old time.  Just let me know when and I'll do it.  I think it's an exciting and great idea!

Found it - of course.  Never fails - ask and then it appears.  I really like the babydoll shirt.  That's a cute one!

At the risk of sounding stupid - I can't find what the baseball jersey looks like (or the sweatshirt).  The one shirt I saw looks EXCELLENT!  Great job on this Mary.  Very impressive.

LOVE these items, Mary!!

My thoughts on what else on the blank list:

Baseball hat (I wear them, as does my hubby)

MOUSEPADS!!

You're doing an awesome job on these, I'm so glad you found this place.

Got mine today, too!  Awesome, really well done!!  I'll take them to our meeting on Sunday and show them off.  Maybe we should let the area chairpersons have a few to sell at meetings, etc.  ??  Just an idea.

I know of a few people who've had this done and it's went very well.  The less invasive, the better in my book.  There's also another surgical technique out there that's called a "stealth" surgery, but I don't have the details on it.  Jess, let me know if you want me to put you in contact with the people I know who've had it done at the Skull Base Institue and Dr. S..

Ali found this for us and posted in the right place, the Pit Surgery board.  But, in case some people just cruise this board I wanted to have as many eyes see this as possible.  At 2am eastern, 11pm pacific, TODAY (march 20) they will have an hour long program on the transphenoidal pit surgery.  I definitely plan on watching this!  A 61 year old man is being operated on, but that's about it for details per the discovery health website.

Very exciting

Carrie,

When I first discovered Cushing's, I went to the doc's office with a thick folder of information.  I told the intake nurse I suspected I had Cushing's.  She patted my hand and said, "Honey, when we were in nursing school, we thought we had every disease we read about, too."  I was just shocked.  I mean, it wasn't like I pulled a disease out of a hat and decided, "Hey, I like this one.  I'll take the one with central obesity, no menstrual cycle, facial hair and muscle wasting.  That sounds good!"  I tried explaining to her that I actually had a bunch of the symptoms, but she assured me that anyone could have those (really?  prove it).  By the time the doctor came into the room, I was scared to even mention it.  I felt like a fool.

The moral of my story is this:  I was right.  And my fear and humiliation delayed my treatment for two years.  Like Kristy says, maybe that just gave me time to become more textbook.  But I sure would love to have those years back or at least know I was working towards a diagnosis.  

I do think you have a good doctor, but sometimes things just don't mesh.  Don't be afraid to keep looking if you're not comfortable or don't feel like the answers you're getting are complete.

Good luck to you

I just like having credit for the article - lol.  When you read it, it looks like I wrote it (wish I had!).  It just proves that none of us fits exactly what the doctors want, nor will we all ever.  A good doctor thinks outside the box and doesn't stop where the lab results do.

Kristy,

I find this study absolutely fascinating.  It kind of supports what we've all been saying all along.  That there is another form of Cushing's that hasn't been recognized up until this point.  Also, I found this line interesting: "The theory was resurrected by Paul Stewart of the University of Birmingham in Edgbaston, U.K., whose group found that people have pockets of high cortisol activity."  Sounds like intermittent to me!

And then this was intriguing:"In April, Joel Berger's group at Merck Research Laboratories in Rahway, New Jersey, showed that a class of antidiabetic drugs now on the market suppresses 11b HSD-1 levels in fat cells."  It almost has to be the drugs used for IR and type II diabetes, don't you think?  Maybe that's why so many of us have felt better on them.  

I really hope this leads somewhere.  If nothing else, it does get the term "Cushing's" out there in the media.  I wish we could find a way to capitalize on it!

Kristy,

WOW..........WOW...........WOW........

Maybe this one should be posted on the main board?  This is just incredible.  WOW.

You rock, Kristy

Study Links Long Menstrual Cycle to Diabetes Risk

By Suzanne Rostler

NEW YORK (Reuters Health) - Young women who have long or irregular menstrual cycles may have a higher risk of developing type 2 diabetes by middle age, study findings suggest.

According to the results, women whose menstrual cycles were at least 40 days long were twice as likely to be diagnosed with diabetes, compared with women whose cycles lasted 26 to 31 days, regardless of body weight. However, the risk was even greater for obese women, researchers report in the November 21st issue of The Journal of the American Medical Association (news - web sites).

Similarly, women with menstrual cycles that were too irregular to estimate were about twice as likely to develop diabetes, compared with women whose cycles were more predictable.

It is not clear why long and irregular cycles may raise a woman's risk of developing type 2 diabetes, a disease in which the body no longer responds to insulin, the body's key blood sugar-regulating hormone. But the researchers, led by Dr. Caren G. Solomon of Brigham and Women's Hospital in Boston, Massachusetts, note that previous studies have found an association between long and irregular cycles and insulin resistance, and suggest that these types of cycles reflect an underlying metabolic abnormality.

In an interview with Reuters Health, Solomon said she suspects that many women with irregular menstrual cycles may have undiagnosed polycystic ovary syndrome (PCOS), a disorder marked by excessive levels of male hormones. Many women with PCOS are also resistant to insulin, she added.

``The most reasonable explanation may be that many women may actually have (undiagnosed) PCOS and that group is insulin-resistant,'' Solomon said.

The study included more than 101,000 women aged 18 to 22 with no history of diabetes. They were interviewed every 2 years for the next 18 years about their weight, exercise habits, smoking status and other lifestyle factors. During that time, 507 cases of type 2 diabetes were diagnosed among the women.

Women with long and irregular cycles were more likely to be overweight at the beginning of the study and to gain more weight over the next 18 years. Women with long and short cycles lasting less than 21 days were more likely than women with normal cycles to report severe teenage acne, abnormal hair growth, ovulatory infertility and gestational diabetes.

``These findings are consistent with the suggestion...that menstrual cycle irregularities may be a marker for associated metabolic abnormalities and suggest that women with this history might particularly benefit from lifestyle approaches to reduce risk, such as weight control and exercise,'' the study authors conclude.

Solomon added that women should tell their doctors if their menstrual cycles are long or irregular, but stressed that not every woman whose cycle does not conform to the 26-to-31-day norm needs to be screened for diabetes.

SOURCE: The Journal of the American Medical Association 2001;286:2421-

Wow..that's really interesting.

Why do the poor mice have to be nude? (LOL)

Definitely visit this..it's very good!

Well..finally got off my duff and called my endo to schedule an appointment with a radiation doctor (what do you call those?!).  I'm going to have a consultation to see if this is a viable, workable alternative for me.  I'm just not physically or mentally ready for the bilateral adrenalectomy yet.  So we'll see.

Does anyone know if you lose your hair with radiation?  Or is that only chemo?  Not a huge deal, my hair looks terrible 90% of the time anyway but I'd like to know.

And Mama Dot - you inspired me.  I figured from your post on the depression board that if you can get up and go to another endo (and yes, that's exactly what I would've done) then I can actually deal with the proven problem that's sitting my lap.

Didn't know where else to post this, but I thought it was interesting.  Mentions both cortisol and ACTH and stress responses. What makes me mad is that they don't mention Cushings (yet again).  And now I'm wondering why the heck I'm still married.  My hubby must have VERY low cortisol and ACTH levels to compensate for mine http://health.excite.com/news_content/arti...87531

Hormone

Body Responses Reveal Conflict Hidden Under Wedded Bliss

By   Neil Osterweil  

Aug. 24, 2001 -- Few events in life are as stressful (or as expensive) as getting married, but divorce certainly gives marriage a run for its money. And now a study looking at newlyweds, 10 years after, suggests that levels of stress hormones in those who have just tied the knot can predict whether they're likely to still be hitched a decade later.

Among 90 "gloriously happy" couples who had undergone an intensive 24-hour assessment of their relationship in the early days of marriage, those who had the highest levels of three out of four key stress hormones during initial interviews were the most likely to be divorced 10 years later.

Although it's unlikely that couples who are engaged will ever have to submit to hormone tests to obtain a marriage license, the study suggests that "for the average person, we are not aware of how daily life events are affecting us," researcher William B. Malarkey, MD, professor of medicine at Ohio State University in Columbus, tells WebMD.

At study outset the couples, who had been screened to eliminate those with existing warning signs for marital strife, were asked to discuss a hot-button issue -- a topic that normally caused conflict in the relationship.

The participants agreed to have blood drawn hourly for a 24-hour period during the initial assessment so that the researchers could record levels of certain hormones known to be elevated during times of stress. The hormones included epinephrine (better known as adrenalin, or the "fight-or-flight" hormone), norepinephrine, ACTH, and cortisol.

Malarkey and colleagues found that participants who scored high on hostility had higher blood pressures and pulse rates, as well as higher levels of stress hormones, and lower immune system functioning, indicating that stress can make people sick.

"Ten years later, we asked the question could we find, in that original response ten years previously, some things, particularly the stress hormones, that might have indicated that even though [divorced couples] could not consciously verbalize problems, they were somehow acting differently than the group that stayed happily married," Malarkey says.

The researchers found that hormone levels were a good predictor of satisfaction with a relationship and marital stability. Women who later divorced had much higher levels of the hormone ACTH during the initial conflict-discussion session than did women who were still married at followup.

"We found that the stress hormones that we looked at -- ACTH, epinephrine, and norepinephrine -- throughout the argument and as well as throughout the day and night were higher in that group that eventually ended up being divorced," Malarkey says.

The study suggests that when it comes to stressful life events, the body may be doing things the mind is completely unaware of, Malarkey tells WebMD. "We are compartmentalizing all the bad vibes that we don't want to consciously think about." The study's findings are being presented at the 16th World Congress on Psychosomatic Medicine underway in Goteberg, Sweden.

A researcher who studies family and marriage and is familiar with the work by Malarkey and colleagues tells WebMD that the findings are consistent with what one could expect to see in a decaying relationship.

"It would make sense that the most toxic, most stressful kinds of conflict interactions are going to be another indicator of problems in the marriage," says Sybil Carrere, PhD, a research psychologist and assistant professor of family and child nursing at the University of Washington School of Nursing in Seattle.

Carrere tells WebMD that there is evidence to show that men are more likely than women to be conscious of changes in heart rhythm brought on by stress, and that "under those conditions where men get very [overstimulated], they tend to withdraw from the conflict and do what has been termed 'stonewalling.' Presumably, it's an effort to try and calm themselves down, but what happens, unfortunately, ... is that when the wife sees the husband withdrawing from the conflict -- which he's doing for self-preservation -- it's sends her through the roof."

You guys are good for my ego

Dot,

Your wish is my command.  Here's the link:

http://www.ibionet.com/OtherSymptoms.html or

www.ibionet.com

Keep calling me a genius and I'll do just about anything for you

As a sales rep for a juice company, I suggest you drink LOTS of my juice:  Tree Top and the store brand orange juices (refrigerated only).   Don't drink the Minute Maid or Tropicana..only store brand.  Just kidding but I thought I'd get my plug in where I can

I rarely drink soda but I do drink a lot of coffee.  I've been trying to wean myself down from 20 oz a day to 16.  I'm successful most days.  I also love iced tea and always have a pitcher of that in the house.  I am an avid water drinker and probably put away 40 oz of that a day, also.

Hi Bonnie!

that's excellent, thanks!  I remember one site where you could check off your symptoms and it'd give you diseases to look at but for the life of me, I can't remember it.  Do you have any idea?  I thought it was bio-----something but now I just plain don't know.

I love stuff like this..thanks again!

Jenn,

This is up at OHSU.  You can call Dr. Samuels directly and inquire about the study.  You may need to have an ACTH test run by your doctor, but otherwise I wouldn't be surprised if you qualify.  The best part is that if they prove you have Cushings then you can have the surgery there.  Actually, the vest best part is that it's all FREE since you're in a study.  I've seen Dr. Samuels and she's an excellent doctor, answers her phone, is caring, etc.  Enough from me, here's the details:

http://www.clinicaltrials.gov/ct....p>Study of Hypercortisolism in Cushing's Syndrome and Stress-Induced Pseudo-Cushing's Syndrome

This study is currently recruiting patients.

Sponsored by

National Center for Research Resources (NCRR)

Oregon Health Sciences University

Purpose

OBJECTIVES: I. Determine whether Cushing's syndrome and stress-induced pseudo-Cushing's syndrome can be differentiated by evaluating endogenous corticotropin-releasing hormone activity.

Condition  

Cushing Syndrome  

MEDLINEplus related topics:  Adrenal Gland Disorders;   Circulatory Disorders

Study Type: Observational

Study Design: Screening

Further Study Details:

PROTOCOL OUTLINE: Patients undergo a 30-hour infusion of deuterated cortisol with peripheral and petrosal vein measurements of adrenocorticotropin hormone (ACTH) and corticotropin-releasing hormone (CRH). Patients also have a 2-day, low-dose dexamethasone suppression test. Patients with ACTH tumors are referred for pituitary surgery as indicated. Patients without Cushing's syndrome are entered as controls. During scheduled radiologic procedures, these subjects undergo ACTH and CRH sampling from the petrosal vein or cavernous sinus following a deuterated cortisol infusion.

Eligibility

Genders Eligible for Study:  Both

Participants:  Healthy Volunteers  and  Patients  

Criteria

PROTOCOL ENTRY CRITERIA: Suspected adrenocorticotropin hormone (ACTH)-dependent Cushing's syndrome No pregnant women Effective contraception required of fertile women

Expected Total Enrollment:  40

Location and Contact Information

Oregon

Oregon Health Sciences University, Portland,   Oregon,   97201-3098,   United States; Recruiting

  Mary H. Samuels  503-494-5242    

Study chairs or principal investigators

Mary H. Samuels,  Study Chair

Oregon Health Sciences University    

More Information

Study ID Numbers  199/11902;  OHSU-3324

NLM Identifier  NCT00004343

Date study started October 1999

Record last reviewed  December 1999

Kristy-

Thank you!  I love links like this..I'm heading over to check it out right now.

Here's one I use a lot also:

www.endo-society.org and then look at the left side menu- you can search all endo journals, peer reviews, etc by keyword.  I've found that extremely helpful!

Shauna

EWWW...that makes me more mad!  Especially since she comes from having knowledge about the disease.  This is what perpetuates people getting misdiagnosed.  I could avoid sugar, high fats, all food and still would be putting on weight.  And, amazingly, it's because of CORTISOL - the tumor kind.

Hrmph.