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This is the latest in the Cushing's Help family of websites.  Be sure to check them all out! It all started with  www.cushings-help.com in July of 2000...

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The Next Scheduled Text Chat

The Next Scheduled Text Chat

Scheduled Text Chats are every Wednesday starting at 9:00 PM Eastern. The Chatroom is always open so you can chat whenever you want. Click the title above (The Next Scheduled Text Chat) to access the room.

New Guests To Be Scheduled

New Guests To Be Scheduled

We always need people to be interviewed in the BlogTalk Interview series. These interviews usually take place on Thursday nights at 7:30PM Eastern but you can do this at any time that's convenient for you. You do not need to be diagnosed to be interviewed!

Upcoming Interviews

Upcoming Interviews

Next Interview: Sarah (saberlowe), February 25, 2010, 7:30PM eastern. Sarah has been sick for 9 years before her diagnosis in October 2009. She had pituitary surgery to remove 4mm x 5mm adenoma in November 2009.

Newsletters!

Newsletters!

The Current Newsletter, February 4, 2010, includes Cushing's news, abstracts, interviews, new bios, Helpful Doctors, meetings and site news.

Upcoming Events

Upcoming Events

Local Lunch, New Jersey, February 20, 2010; UVa Pituitary Days 2010 conference, April 16-17, 2010 in Charlottesville, VA; Cushing's Lunch, Metro DC area, April 25, 2010; Magic Foundation Conference, including Cushing's and Growth Hormone Issues 6/11-13/2010 in Chicago; Endo 2010 (San Diego, California) 6/19-22/2010; Cushie Convention 2011, Winnipeg, MB, Canada or St. Louis, MO, USA, 11/18-20/2011; and tentative meetings in New England and Seattle, WA

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Cushing's Help and Support
07
Jul
2009
Guess some endos aren't happy, either! Biopsy of adrenal masses PDF Print E-mail

This woman clearly has Cushing’s syndrome. Her adrenocorticotropic hormone was undetectable, and her 24-hour urine-free cortisol was one of the highest I have ever seen: 1,095 ug/24 hours (upper limits of normal 45). There was no evidence of pheochromocytoma or hyperaldosteronism but dehydroepiandrosterone sulfate was elevated. The rapid onset of symptoms, large tumor size, imaging characteristics and evidence of secretion of more than one adrenal hormone concern me greatly for adrenocortical carcinoma. She will be undergoing surgical resection next week.

I know this is a recurring theme in my posts, but I will make this observation yet again: Why is it that the endocrinologist is so often the last subspecialist to see a patient, including the patient with obvious endocrine disease?

Read more: Guess some endos aren't happy, either! Biopsy of adrenal masses
 
29
Jun
2009
Have an appointment with the doctor? Tips show what to ask PDF Print E-mail

Good general info for anyone, no matter what symptoms or disease you may have.

by John Beale

Good communication between patients and their health-care practitioners is essential for good care. To help older adults better communicate with their health-care providers, the American Geriatrics Society's Foundation for Health in Aging has released a new, easily understandable tip sheet.

The tip sheet, "How to Talk to Your Healthcare Practitioner: Tips on Improving Patient-Practitioner Communication," outlines steps older adults and their caregivers can take before, during and after a visit to a practitioner. These steps help ensure practitioners, older patients and their caregivers get the information they need. The tip sheet is available online at: http://www.healthinaging.org/public_education/communication_tips.php .

Read more: Have an appointment with the doctor? Tips show what to ask
 
04
Jul
2009
Adrenal Testing and Treatment PDF Print E-mail

In the first two newsletters in this series, we discussed the following:
• The endocrine system and how it is composed of glands throughout the body that  release hormones (chemical messengers) into the bloodstream or the fluid surrounding cells. These hormones activate receptors and either alter the cell's existing proteins or instruct the cell in the building of new proteins that create actions in the body.

• The importance of the hypothalamus and the pituitary gland and how these two glands control the two adrenal glands--the HPA axis as it is called, and control the thyroid; 

• Each adrenal gland has two parts, the adrenal cortex and the adrenal medulla and the purpose of each;

• The symptoms of adrenal problems and how many of them are similar to symptoms created by problems in the thyroid and other endocrine glands;

• The primary purpose of the adrenal glands, and the entire endocrine system, is to keep the body in a balanced condition called homeostasis;

• The purpose of cortisol and the problems created when cortisol levels are too high or too low;

• How the adrenals can create hypoglycemia, where blood sugar levels are lower than normal;

• How the adrenals affect fatigue, insomnia and obesity;

• How the adrenals affect proper hydration of the body.


Here are links to the first two articles in the series. (http://media.novusdetox.com/dependence.php?include=139775, http://media.novusdetox.com/dependence.php?include=139840)


   In this newsletter we will look at the tests used to determine adrenal problems and the most common treatments.


TESTS
   If you go to most doctors and say that you are suffering from insomnia, fatigue, hypoglycemia, weight gain and other symptoms of adrenal problems and ask for an adrenal test, most doctors will likely tell you that you need to just take this or that pill and go on a diet.  This is always true of Radio Medicine Doctors because they just want to turn up the volume and drown out the symptoms and not treat the cause.
   If you persist and demand that they test your adrenals, then they likely will do tests to determine if you have Addison's disease or Cushing's syndrome—diseases where you either have the lowest or highest amounts of cortisol. 
   First, we will look at the worst cases of adrenal problems and then the more common adrenal problems that affect the majority of us to a greater or lesser extent.


ADDISON'S DISEASE
   Addison's disease occurs when the adrenal glands do not produce enough cortisol and, in some cases, aldosterone. This disease is also called adrenal insufficiency, hypoadrenia (“hypo”=low and “ism” =condition of) or hypocortisolism.
According to the National Institute of Health:
• Addison's disease affects about 1 in 100,000 people;

• Adrenal insufficiency occurs when at least 90 percent of the adrenal cortex has been destroyed and no cortisol is being produced.


ADDISON'S DISEASE TESTS
   Two of the common tests used to diagnose Addison's disease are:
• ACTH Stimulation Test - where ACTH is released by the pituitary gland to signal the adrenals to produce more cortisol.  The ACTH Test usually measures the levels of  blood cortisol, urine cortisol before and after a synthetic form of ACTH is given by injection.  If the adrenals are functioning properly, there is an increase in blood and urine cortisol levels and the amount of the increase tells doctors about the extent of the adrenal problem.
• CRH Stimulation Test - if the ACTH test is abnormal, a CRH (cortisol releasing hormone from the hypothalamus) stimulation test is used to determine the cause of adrenal insufficiency.  Synthetic CRH is injected intravenously and blood cortisol is measured before and 30, 60, 90, and 120 minutes after the injection. If there is no ACTH response, this indicates the problem may be the pituitary gland.  If there is a delayed ACTH response, the hypothalamus may be the cause.


ADDISON'S DISEASE TREATMENT
   Treatment of Addison's disease requires replacement of the missing cortisol or replacement of the missing aldosterone. 


CUSHING’S SYNDROME
   Cushing’s syndrome or hypercortisolism (“hyper”=high and “ism” =condition of) is diagnosed when there is a high level of cortisol for a long period of time.   According to the National Institute of Health, Cushing’s syndrome is relatively rare and most commonly affects:
• Adults aged 20 to 50;
• People who are obese and have type 2 diabetes.
   Because of the dangerous effects of elevated cortisol levels, this is why people who take prednisone (a synthetic form of cortisone that is used in the treatment of rheumatoid arthritis and other inflammatory diseases) or any other form of cortisol should carefully monitor their cortisol levels. 

Read more: Adrenal Testing and Treatment
 
18
Sep
2009
Carol Perkins' Pet Project: Home bound with a devastating illness, former fashion model Carol Perkins started designing accessories for dogs and discovered a new career PDF Print E-mail

Throughout her 20s and 30s Carol Perkins lived a dream life. She traveled the world as a Ford model and appeared in magazines like Vogue and Harper's Bazaar. In her early 30s she continued modeling for clients like Victoria's Secret and started performing with magicians Penn and Teller. When she wasn't working she was out on the town, at art exhibition openings, theater events, and nightclubs. Home was a loft apartment in Manhattan. "It was a fashionable, fast-paced life," Perkins says. "Definitely glamorous."

Then she got sick. "I started getting dizzy and having severe headaches," she recalls of 1995. Even worse for her career, her weight shot up by 70 pounds. She developed a hump between her shoulders and noticed hair growth on her chin. Doctors prescribed antidepressants, weight-loss pills, and migraine medication, but nothing helped. As the bizarre symptoms intensified, Perkins could no longer work. "I was disfigured and unemployable," she says. "I kind of hunkered down and lived off my savings."

In a short time Perkins had gone from jet-setter to shut-in. Many friends, unable to deal with her illness and physical transformation, stopped coming by. "It was a really dark downward spiral," she remembers. Two things kept her from complete despair: dogs and sewing. Perkins had always loved animals, so much so that she'd once considered going to veterinary school. But her travel-heavy career had made it impossible for her to have a pet. Now homebound, she began pet-sitting for friends and neighbors. "They were my emotional support dogs," she says. "Dogs don't care if you're fat -- they love you unconditionally." Perkins also loved to sew, and she began making robes, sweaters, and dog beds as gifts for her canine guests. "There's such a joy in making something with your hands," she says. "I was really grateful to have a purpose."

A year and a half later Perkins was finally diagnosed with Cushing's syndrome. In her case the rare illness was caused by a tumor on the pituitary gland, which made her body produce too much cortisol and led to her many strange symptoms. Two weeks later she underwent brain surgery to remove the tumor. When she awoke, "It was like a weight had been lifted," she recalls. "I decided right then that I was going to devote myself to helping animals and people."

Last Updated ( Friday, 18 September 2009 09:53 )
Read more: Carol Perkins' Pet Project: Home bound with a devastating illness, former fashion model Carol Perkins started designing accessories for dogs and discovered a new career
 
22
Jun
2009
Robin Smith (staticnrg) submitted 'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0' PDF Print E-mail

Robin (staticnrg) submitted an abstract to Medicine 2.0Medicine 2.0 is the annual open, international conference on Web 2.0 applications in health and medicine, also known as the World Congress on Social Networking and Web 2.0 Applications in Medicine, Health, Health Care, and Biomedical Research.

This conference distinguishes itself from "Health 2.0" tradeshows by having an academic form and focus, with an open call for presentations, published proceedings and peer-reviewed abstracts (although there is also a non-peer reviewed practice and business track), and being the only conference in this field which has a global perspective and an international audience (last year there were participants from 18 countries).

An academic approach to the topic also means that we aim to look "beyond the health 2.0 hype", trying to identify the evidence on what works and what doesn't, and have open and honest discussions.

This year's conference will be held in Toronto, Canada and will be attended by

  • Academics (health professionals, social scientists, computer scientists, engineers)
  • Software and Web 2.0 application developers
  • Consultants, vendors, venture capitalists, business leaders, CIOs
  • End-users (health professionals, consumers, payors)

Robin's abstract was submitted and accepted!  WooHoo!

'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'

Last Updated ( Monday, 22 June 2009 10:08 )
Read more: Robin Smith (staticnrg) submitted 'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'
 
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