Kristy

Hi Jody,

Post-op, I was out of work about 8 weeks, primarily because I wasn't stable enough to go to work sooner. I am glad you are going to NIH! I think you will be well cared for! It is true that many of us cured cushies don't stick around. I quit posting regularly a number of years ago. Life just had me busy, and this is a good thing! I had the microadenoma that was left to grow while the doctors squabbled about me having or not having Cushings over a 5 year period. I ultimately was diagnosed with Cyclical Cushings in 2004. Unfortunately for me, the tumor grew all throughout the gland during this time. Post surgery, the tumor grew back in fragments. For me, radiation using gamma knife was the right choice instead of a second surgery. I've continued to work and I'm working on my MBA. I haven't returned completely to pre-cushings status (I think the weight loss is the hardest), but have major improvements. For me, having my mind back in working order has been the most blessing. Take care, and keep positive for the days ahead!

Kristy

Nope... just can't seem to find that magic bullet. What I have noticed though, is patients who were suspected of cushings who took avandia and actos, that it did take alot longer to have their cushings diagnosed. Unfortunately, one of the side effects of the medicines was weight gain... so it seems to me that it may have helped biochemically, but when you are trying to tell your doctor that something is terribly wrong...

Never mind... you all know where I am going.

The drug is Avandia... and with all of the new warnings about it... I expect they are looking for another way.

http://www.fda.gov/bbs/topics/NEWS/2007/NEW01636.html

Yes, this is great news for ectopic Cushings patients!

This drug is already used to treat acromegaly. Tammy noticed alot of improvement on the trial. It is a 15 day trial.

If results are promising, this could lead to a medicine approach to treating Cushings.

I'd do it... but... I didn't meet the criteria for the protocol.

Good luck!

10-15 new cases of Cushings per million is all Cushings cases, steriod induced, pituitary, adrenal, and cancer. Steriod induced Cushings is predominate. 13% of hormone secreting tumors are ACTH secreting tumors. 15% are GH secreting. The stats for GH secreting tumors that cause acromegaly is about 3 people per million per year, so that means ACTH secreting pituitary tumors that cause Cushings Disease are 1-2 people per million per year. That puts adrenal cushings

I don't... it isn't new, just 'new and improved' so... I am skeptical.

There is more to pituitary tumors than growth. There is a whole issue about the hormone side of the story.

You first. :ph34r:

This is actually based on research that came out a few years ago with 11-[beta]-hydroxysteroid dehydrogenase and mice. You can read alot about the research on the web.

I don't know if it will help us or not, but I know I was willing to try just about anything - lol.

Pseudo cushings, cushings, crazy woman... I had gotten just about to the point where quite frankly, it didn't matter.... I was ill.

He knew it too.... he knew it.

His e-mail on his website is returning to sender, so it is ole letter and stamp... I am sending mine!

Maybe Dr. Bost in Beaumont Texas has never REALLY had a cushings patient as a patient?

Dr. Brent. Bost

3030 NORTH ST STE 310

BEAUMONT, Texas 77702

k

I don't think it is about us. I think it is about donor fees, funds, grants, symposia, abstracts, speaker fees, and fame, not to mention admiration from friends and colleagues.

Sadly, we have a few doctors who have forgotten why they are doctors. My uncle is a doctor - quite a surgeon amongst his colleagues, and he is quick to tell me all of the papers he has spent his lifetime on... and the lectures and the travels.... but I wondered as he once talked with me about his personal accomplishments amongst his colleagues... if he felt the same pride when he put humpy dumpty back together again...

if he felt that same glow when he put shattered limbs, flesh, and soul back together again.

Mother called me last week to tell me that my uncle was so upset, that he couldn't ski anymore, he tore his retina.

I can't ski - too weak.

Wonder if he can operate anymore.

God thing?

I went to a Healthcare Design Conference last week and had a blast listening to the case studies presented by design professionals solving problems in our hospitals and healthcare facilities. These people have the patients, doctors, and hospital staff as primary focus. It was like... here is the problem, and here are our constraints, and this is how we solved it and look at the result Whoo Hoo!

The breakouts presented by the academia though...

I wonder about those published studies. (Skeptic)

But... I have a medical library card... and am glad to use it for you! Just ask!

There is always another way

I wear my pin everyday on my work badge!

Here is a new article!

The biochemical investigation of Cushing syndrome

MARIE SIMARD, M.D.

Division of Pediatric Endocrinology, Department of Pediatrics, University of Utah School of

Medicine, Salt Lake City, Utah

Neurosurg Focus 16 (4):Article 4, 2004,

http://www.aans.org/education/journal/neur...pr04/16-4-4.pdf

I was watching TV the other night, and they had an episode where the wife on this sitcom had alot of stress and was loosing hair by the handfuls. She went to the doctor and he checked her out and did testing. Her thyroid was fine. He told her to exercise and lose weight.

So... the rest of the story started off on her exercise adventure with her husband... I lost interest pretty quickly (Im not a TV watcher anyways).

Nice article... It is nice to get more attention about stress and what stress does to the body in the media. Now if we can get the discussion bumped up just a wee bit higher .

Interesting case about an ectopic ACTH secreting tumor.

You will need to register to see this article, but registration is free:

http://www.medscape.com/viewarticle/469833

A 42-Year-Old Cushingoid Man With a Bleeding Duodenal Ulcer

A man with a 15-year history of heartburn presented to clinic after his symptoms became more frequent and severe. The patient also observed a 20-lb weight gain; increased facial hair; and acne.

Here is the summary:

Although our patient had a rare tumor, the differential diagnosis illustrates the interesting biologic spectrum of neuroendocrine tumors of the pancreas. These tumors can occur sporadically in patients without a family history. However, one tumor can produce multiple hormones. In this situation, the tumors may mimic the MEN syndromes, prompting a search for second or third tumors. The presence of MEN-1 syndrome should be investigated in all patients with concomitant Zollinger-Ellison syndrome and Cushing's syndrome. Only a full hormonal and anatomic evaluation can clarify the clinical alternatives: one tumor producing multiple hormones vs multiple endocrine tumors.

Gastrinomas that produce ACTH are much more biologically aggressive than simple gastrinomas. Therapy is not based on prospective randomized clinical trials but on appreciating the unique combination of hormone production and tumor spread. Treatment decisions first involve symptom control, then a multidisciplinary approach that may include surgical debulking, somatostatin analog therapy, and chemotherapy

Some of the links above are 'dead' or non-existent, so I decided to 'refresh' and add some new; I was also working on a request from a new board member who needed the information.

Cushings' Syndrome by Dr. David N. Orth

http://www.profmourao.hpg.ig.com.br/36.pdf

From the Endocrine Society Up to Date:

http://patients.uptodate.com/frames.....disease

The Diagnosis and Differential Diagnosis of Cushing?s Syndrome and Pseudo-Cushing?s States

http://edrv.endojournals.org/cgi/content/full/19/5/647

Diagnosis and Management of Cushing?s Syndrome: Results of an Italian Multicentre Study

http://jcem.endojournals.org/cgi/content/full/84/2/440

Cushing's disease: clinical manifestations and diagnostic evaluation - American Family Physician

http://www.aafp.org/afp/20000901/1119.html#al1

Cushings Syndrome by Dr. Goodarzi from UCLA:

http://www.endocrinology.med.ucla.edu/cushing's_syndrome.htm

National Institutes of Health

Cushing Syndrome: http://www.nichd.nih.gov/publications/pubs/cushings.htm

Nutrition Information for Patients who have Cushing's (pdf)

http://www.cc.nih.gov/ccc/patient_educatio...bs/nutrcush.pdf

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

Cushings Syndrome: http://www.niddk.nih.gov/health/endo/pubs/...gs/cushings.htm

National Adrenal Foundation:

http://www.medhelp.org/nadf/

ENDOCRINE CARE:

Dimitris A. Papanicolaou, Nancy Mullen, Ioannis Kyrou, and Lynnette K. Nieman

Nighttime Salivary Cortisol: A Useful Test for the Diagnosis of Cushing?s Syndrome

J. Clin. Endocrinol. Metab., Oct 2002; 87: 4515 - 4521.

http://jcem.endojournals.org/cgi/reprint/87/10/4515.pdf

Psychosomatic Medicine

ORIGINAL ARTICLES:

Monica N. Starkman, Bruno Giordani, Stanley Berent, M. Anthony Schork, and David E. Schteingart

Elevated Cortisol Levels in Cushing?s Disease Are Associated With Cognitive Decrements

http://www.psychosomaticmedicine.org/cgi/r...nt/63/6/985.pdf

American Journal of Neuroradiology

BRAIN:

Frank S. Bonelli, John Huston III, Paul C. Carpenter, Dana Erickson, William F. Young, Jr., and Frederic B. Meyer

Adrenocorticotropic hormone?dependent Cushing's Syndrome: Sensitivity and Specificity of Inferior Petrosal Sinus Sampling

AJNR Am. J. Neuroradiol., Apr 2000; 21: 690 - 696.

http://www.ajnr.org/cgi/reprint/21/4/690.pdf

Modern Pathology

CASE REPORTS:

Shigeyuki Tahara, Reiko Kurotani, Yudo Ishii, Naoko Sanno, Akira Teramoto, and R. Yoshiyuki Osamura

A Case of Cushing?s Disease Caused by Pituitary Adenoma Producing Adrenocorticotropic Hormone and Growth Hormone Concomitantly: Aberrant Expression of Transcription Factors NeuroD1 and Pit-1 as a Proposed Mechanism

Mod. Pathol., Oct 2002; 15: 1102 - 1105.

http://modpath.uscapjournals.org/cgi/reprint/15/10/1102.pdf

Hypertension

COLIN JOHNSTON - A CELEBRATION:

Judith A. Whitworth, George J. Mangos, and John J. Kelly

Cushing, Cortisol, and Cardiovascular Disease

Hypertension, Nov 2000; 36: 912 - 916.

http://hyper.ahajournals.org/cgi/reprint/36/5/912.pdf

A new website you can also visit is http://www.endotext.org/.

If you find any other helpful articles and websites, please add them here!

I'll drop it in the mail tomorrow...

Yes it is good. There is an error though, one I see repeatedly.

The dst-CRH test. The Dst-CRH test or Dex-CRH test is designed to distinguish pituitary Cushings disease from pseudo cushings. It is incorrectly listed as distinguishing Cushings Syndrome (all forms) from pseudo.  The NIH studies (as well as others) clearly indicates the test is for pituitary disease.

http://jcem.endojournals.org/cgi/reprint/83/2/348.pdf

Under cure...

Major centers... 70-80% remission... long term follow up is 25% recurrance.

Under complications...

Mortality rate 4x higher than age and gender matched controls.

Cardiovascular

Impaired glucose tolerance, diabetes

Obesity

Hyperlipidemia

Coagulopathy

Metabolic Syndrome

Osteoporosis

Psychologixal and cognitive alterations

Alterations of other endocrine systems - GH, Gonads, Thyroid

Bottom line... complications of CS may alter life expectancy and life quality even in patients 'cured' by surgery. Article says clinicians should diagnose treat complications.... strenous attempts to control hypercortisolism.

I have full access to the article... and will share as long as copyright is followed.

k

Senate Passes Anti-Obesity Bill

WASHINGTON (Reuters) Dec 10 - The U.S. Senate on Tuesday approved a bill to combat the growing problem of obesity, especially among children and teenagers.

Noting that obesity increases the risk of diabetes, heart disease and some cancers, the bill authorizes a $60 million pilot project to help communities develop programs to address the problem, in part by promoting good nutrition and physical fitness. The programs would also deal with eating disorders.

More than 60% of U.S. adults and 13% of children are estimated to be overweight and about 300,000 deaths a year are associated with being overweight or obese, the bill's sponsors said.

The number of overweight children has doubled in the past 30 years and the number of overweight adolescents has tripled, they said.

Tammy,

The research on what Cushings does to the brain is what got me... I am on medication, but the doctors are keeping a really close eye on me.

I was on Avandia three years ago - It didn't help. I had horrid edema - I gained weight. I was miserable.

If the medication experiment does not work for me, and if there is still no cure...

I've got too much to live for  :eh:

So do you.

The research has only been done in animals, not in humans. I found this in a news wire a few weeks ago. I think you need to move forward Tammy.

Diabetes Drugs May Cause Heart Failure.

Tuesday, September 9, 2003 Posted: 10:15 AM EDT (1415 GMT)

WASHINGTON (Reuters) -- Two popular drugs used to treat type-2 diabetes can cause fluid buildup and heart failure in some patients, U.S. doctors said on Tuesday.

The drugs, sold under the brand names Avandia and Actos, caused heart failure and a buildup of fluid in the lungs in six men with poor kidney or poor heart function, the researchers said.

The findings, published in the Mayo Clinic Proceedings, are another potential blow to the newest class of diabetes drugs, the thiazolidinediones or glitazones.

The first drug in the class, Rezulin, was pulled from the market in March 2000 after about 100 people who took it died from acute liver failure or had to have liver transplants.

Pfizer Inc., which owns Rezulin as part of its purchase of Warner-Lambert company, is fighting off thousands of lawsuits alleging that Warner-Lambert failed to inform the public of the drug's health risks.

Tuesday's report from a team at the University of Texas Southwestern Medical Center at Dallas may support lawsuits by other patients against GlaxoSmithKline Plc, which makes Avandia, known generically as rosiglitazone.

The six men whose cases are detailed in the report took either Avandia or Actos, known generically as pioglitazone and jointly marketed by Japan's Takeda and Eli Lilly Co. Inc.

An estimated 6 million Americans take one or the other of the drugs. About 16 million Americans have type-2 or adult-onset diabetes.

Many do not need to take insulin but can take a variety of drugs including metformin and drugs in a class called sulfonylureas. The glitazones are gaining in popularity because they restore the body's ability to respond to insulin.

High-risk patients

"Many physicians are prescribing these drugs in patients with chronic renal insufficiency because a first-line diabetes drug, metformin, is not recommended for them," said Dr. Abhimanyu Garg, a professor of internal medicine at UT Southwestern who worked on the study.

"These new data suggest that such patients may be at particularly high risk of developing heart failure. These are newer agents, and we need to become more familiar with their side effects so that we can use them judiciously."

All six patients showed up at the Veterans Affairs Medical Center in Dallas with shortness of breath, weight gain and swelling in the legs. "These are the signs and symptoms of congestive heart failure and pulmonary edema," Garg said in a telephone interview.

Pulmonary edema is a potentially fatal condition in which fluid builds up in the lungs because the heart is not working efficiently.

"All physicians are aware that these drugs can cause swelling of the legs. But whether they could cause this serious complication was not very clear," Garg said.

The drugs increase blood volume, and doctors are told not to use them in patients with the most advanced heart dysfunction. But Garg said these six men all had mild to moderate heart and kidney problems.

"It seems to me these drugs may not be safe in such patients. They may not be able to tolerate fluid overload induced by such drugs," he said.

Luckily, he said, the patients were treated, taken off the glitazone drugs and all recovered.

In June, 32 diabetes patients in Texas and California sued GlaxoSmithKline, claiming the company failed to warn them of serious side-effects of Avandia.

But a spokeswoman for GlaxoSmithKline said Avandia's U.S. label warns that the drug can cause fluid retention that can cause heart failure or worsen it.

Promise, it's sitting on my desk, I have you and one more to get it to... lol... just got a bunch to do.... a meeting with some important folks tomorrow and then I'll get it off (I gotta read it first ya know! ) hehe.gif

Maybe we should all write the editor....

k

Physicians Not Immune From Anti-Fat Bias: A Newsmaker Interview With Marlene Schwartz, PhD

Laurie Barclay, MD

Sept. 30, 2003 ? Editor's Note: Even health professionals specializing in obesity tend to be biased against overweight individuals, according to the results of a study published in the September issue of Obesity Research. Although the level of bias is lower than in the general community, it is striking in a group trained in the genetic and environmental basis of obesity.

In this study, 389 health professionals attending an international obesity conference in Quebec City completed the Implicit Associations Test and a self-administered questionnaire measuring explicit attitudes, personal experiences with obesity, and demographic characteristics. These clinicians and researchers associated the stereotypes lazy, stupid, and worthless with obese people. Bias was less in older individuals, in men, in those working directly with obese patients, in those who felt they understood the experience of obesity, and in those who had obese friends.

To learn more about the implications of these findings, Medscape's Laurie Barclay interviewed lead author Marlene Schwartz, PhD, coordinator of the Yale Center for Eating and Weight Disorders and an associate research scientist in psychology at Yale University in New Haven, Connecticut. The study was funded by the Rudd Institute, a nonprofit foundation studying anti-fat bias. Dr. Schwartz has no other financial disclosures.

Medscape: What are the main study findings?

Dr. Schwartz: The primary findings of the study are that health professionals who specialize in obesity exhibit an automatic anti-fat bias. The level of this bias is lower than [that] found in previous research with community samples; however, it is still significant.

Medscape: Is there any explanation for the findings that younger people show greater bias than older people, or that men tend to be less biased than women?

Dr. Schwartz: My hypothesis is that these findings are consistent with research that young women are the group at highest risk for body dissatisfaction. This is probably due to the fact that young women are also exposed to the greatest societal pressures to be thin, such as viewing fashion models or TV characters.

Medscape: Were you surprised that health professionals tended to show the same bias as lay persons? What can be done to counteract this bias?

Dr. Schwartz: The health professionals in our study were less biased than lay persons, which was encouraging, but the fact that they did have the bias did not surprise us. We all have grown up in the same society and are exposed to the same media messages and societal pressures to be thin. The fact that even health professionals have the bias reinforces how incredibly pervasive and powerful the stigma of obesity is in our society.

Medscape: If understanding the experience of obesity and having obese friends tends to lessen bias, does this suggest that sensitivity training might be helpful?

Dr. Schwartz: Thank you for asking this question ? the purpose of this study was not to simply say that professionals are biased; it is to move the field forward in finding ways to combat this bias. In fact, the North American Association for the Study of Obesity is the group that we studied, and it was their journal where the study was published. This group is courageous in acknowledging this bias and wants to be in the forefront of making changes to promote positive attitudes toward obese individuals.

So, yes, sensitivity training might be helpful. Trying to understand the experience of an obese person ? for example, by wearing a "fat suit" for a day ? might help. I think that one way to change our thinking is to substitute another physical condition or medical problem for obesity when we think about what is appropriate. For example, in professional presentations, it is not uncommon for researchers to have unflattering pictures of obese people eating large amounts of food, or wearing clothes that are too tight, to illustrate their talk and be humorous. I've often thought that if we were at an AIDS conference it would never be tolerated to have pictures of emaciated people using intraveous drugs or having unprotected sex as a way to illustrate talks.

The researchers associated with the Rudd Institute have been doing a number of studies to test different ways to change levels of bias, and we haven't yet found a solution. Ongoing research by Rebecca Puhl suggests that people are most likely to change their attitudes when they find out that others they respect do not hold those attitudes. In other words, knowing that anti-fat attitudes are not tolerated among respected groups may help people change their own attitudes.

Medscape: Could some of the negative stereotypes endorsed by physicians in this study, such as linking "obese people" to "bad," be explained by the negative health consequences of obesity?

Dr. Schwartz: This is an excellent question as well. Yes, some people say that they associate "fat people" with "bad" because it is bad to be fat; it's unhealthy in a number of ways. It is possible that this accounts for some of the effect, and that the positive versus negative valence of the adjective pairs was responsible for the effect more than the actual words themselves. However, I think about the research on anti-fat attitudes among young children (a study was published earlier this year by Latner & Stunkard in Obesity Research on this) and I'd be willing to bet anything that elementary school children do not discriminate against their overweight peers because they are thinking about their increased risk of heart disease and diabetes.

Medscape: Does weight bias among health professionals endanger obese patients or increase the risk of less-than-optimal care?

Dr. Schwartz: This is an important question to study. We do not know the relationship between implicit attitudes and actual behavior around patients, but we hypothesize that our attitudes do affect care. Our hope is that increasing awareness will help all of us be more mindful of the assumptions we make about our patients ? such as whether or not we believe they will be compliant, or whether we believe they are doing all they can to take care of themselves ? are influenced by their size.

As a psychologist, I have worked with patients who have made tremendous behavior changes in terms of exercise and healthy eating and haven't lost as much weight as their physicians expected. My patients felt their physicians didn't believe how hard they'd worked or didn't value the changes they'd made as much as the number on the scale. My message to physicians is to focus on the behaviors of their patients more than the number on the scale. We are all limited in how much absolute control we have over what that number will be.

Medscape: Is there anything you'd like to add in closing?

Dr. Schwartz: We have put the Implicit Association Test on the Web, and it would be great if you could encourage your readers to take the test themselves. It takes about 20 minutes and is at http://www.weightbias.org. This site links to [the Rudd Institute Web site], which describes the organization that funded this study and is committed to addressing obesity bias in our culture.

What makes me panic about this study is that demonstrating anti-fat attitudes in health professionals specializing in obesity might legitimize these attitudes in the general population. These findings should not be used to justify anti-fat bias, but rather to point out that even physicians and other providers need to be aware of their own bias and take measures to counteract it.

Obes Res. 2003;11:1033-1039

Reviewed by Gary D. Vogin, MD

--------------------------------------------------------------------------------

Laurie Barclay, MD Writer for Medscape Medical News

Medscape Medical News is edited by Deborah Flapan, assistant managing editor of news at Medscape. Send press releases and comments to news@webmd.net.

Did you make it to Houston for your consult? I think after things settle you will be going in less frequent.

The Anderson Network's "Ask the Expert" message board will be taking questions regarding bone health June 2 through June 6. Dr. Rena Sellin will be available to answer your questions about osteoporosis and other bone health issues. To submit questions, log on the message board at www.mdanderson.org/asktheexpert. Please note that the board will only be open for questions this week but past topics are archived and available to read.

The questions are probably geared to bone health after Cancer, but I don't see why questions won't be answered after Cushings either, as Dr. Sellin is part of the Pituitary endocrine team at MDAnderson.