CushingsHelp

It's about time there was some support for Cushing's!

This site provides information, support, RSS feeds, news, and education for people with Cushing's or other endocrine problems. Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of cortisol.

Blog Posts

Alan Dp

Re: Clinical trial of Corlux (mifepristone) in the treatment of Cushing's syndrome

We are currently conducting a clinical trial on the use of Corlux (mifepristone) in the treatment of the signs and symptoms of Cushing's syndrome. For patients who had failed pituitary surgery or radiation therapy or those who have been uncontrolled by ketoconazole, this might be a good alternative. Let me emphasize though that this is a research study and we are looking for volunteers. If you want to learn more, please indicate your interest via this posting. Thanks.… Continue

Posted by Alan Dp on September 8, 2009 at 12:18pm

Mary

Current Cushing's Newsletters

Are always listed here: Cushing's Newsletters

The most recent is April 23, 2009

In This Issue

Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Podcasts

Cushing's on Facebook and Twitter

Media - Rare Care for a Rare Disease

Want to Volunteer?

Robin writes: Diagnosing and Treating Cushing's: Presentations by Dr. Theodore C. (Ted) Friedman

Clinical Trial: Women Wit… Continue

Posted by Mary on April 23, 2009 at 11:20am

Mary

The Current Cushing's Newsletter

http://www.mynewsletterbuilder.com/tools/view_newsletter.php?newsletter_id=1409733169

In This Issue

Welcome to the new Newsletters!

This Week's Chat Schedule

News Items

Upcoming Interviews

Upcoming Meetings

An Interesting Blog on Support Groups

New and Updated Bios

Want to Volunteer?

Cushie Bloggers

Testing: When the "gold standard" becomes tarnished....

Book Project

Did You Know?

Donations

Helpful Links

Posted by Mary on September 30, 2008 at 10:33am

Mary

Interview with Dr Rob, October 2, 2008

Dr. Robert Lamberts aka "Dr. Rob": Dr. Robert Lamberts, aka "Dr. Rob", write the amusing and insightful Musings of a Distractible Mind. He also is the "father" of a lobster named Zippy who travels the world seeking a cure for pediatric cancer.

His profile in his blog reads:

Doctor, Blogger, Goofball. Yes, that is me. Dr. Sid called me the "Dave Barry of medical blogging," but I like to think of myself as the "Hulk Hogan" of the Medical blog world. It just makes more sense to me. Anyway, I auth… Continue

Posted by Mary on September 26, 2008 at 11:56am

Mary

Interview with Sheryl (sherylr), August 7, 7:30PM

Sheryl will talk about what it's been like living with Addison's after a BLA - for over 30 years.

Read Sheryl's bio at http://www.cushings-help.com/sheryl.htm.

The Call-In number is (646) 200-0162.

http://www.blogtalkradio.com/CushingsHelp

Posted by Mary on August 1, 2008 at 1:30pm

 

About Cushing's

What is Cushing's?

Cushing's syndrome, also known as hypercortisolism or hyperadrenocorticism, is an endocrine disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol (in the blood) from a variety of causes, including primary pituitary adenoma (known as Cushing's disease), primary adrenal hyperplasia or neoplasia, ectopic ACTH production (e.g., from a small cell lung cancer), and iatrogenic (steroid use). It is relatively rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year. Cushing's was discovered by American physician, surgeon and endocrinologist Harvey Cushing (1869-1939) and reported by him in 1932.

Normally, cortisol is released from the adrenal glands in response to ACTH being released from the pituitary gland. Both Cushing's syndrome and Cushing's disease are characterized by elevated levels of cortisol in the blood, but the cause of elevated cortisol differs between the two.

* Cushing's disease specifically refers to a tumor in the pituitary gland that stimulates excessive release of cortisol from the adrenal glands by releasing large amounts of ACTH.
* In Cushing's syndrome, ACTH levels will normally drop due to negative feedback from the high levels of cortisol. All forms of Cushing's are correctly called Cushing's Syndrome.

Cushing's syndrome occurs when the body's tissues are exposed to excessive levels of cortisol for long periods of time. Cortisol helps maintain blood pressure and cardiovascular function and is responsible for helping the body respond to stress. Many people suffer the symptoms of Cushing's syndrome because they take steroids such as prednisone for asthma, rheumatoid arthritis, lupus and other inflammatory diseases, or for immunosuppression after transplantation. Prednisone is well-known for a "bloating" look that it gives people who take it.

Others develop Cushing's syndrome because of overproduction of cortisol by the body due to a tumor on the pituitary (usually an adenoma or benign tumor of the pituitary glands) or adrenal glands, or elsewhere in the body Adrenal cancers, or other adrenal abnormalities may be the cause of Cushing’s Syndrome as well.

People who have been diagnosed with depression, alcoholism, malnutrition and panic attacks tend to have higher cortisol levels as well. These types of Cushing's may be called Pseudo-Cushing's.

Symptoms vary, but most people have upper body obesity (central obesity), rounded face ("moon face"), increased fat around the neck and on the back of the neck (buffalo hump), and thinning arms and legs. Children tend to be obese with slowed growth rates.

Other symptoms appear in the skin, which becomes fragile and thin. It bruises easily and heals poorly. Purplish pink stretch marks (straie) may appear on the abdomen, thighs, buttocks, arms and breasts. The bones are weakened, and routine activities such as bending, lifting or rising from a chair may lead to backaches, rib and spinal column fractures.

Most people have severe fatigue, weak muscles, persistent hypertension (due to the aldosterone-like effects) and insulin resistance, leading to hyperglycemia (high blood sugars) which can lead to diabetes mellitus. Patients frequently suffer various psychological disturbances, ranging from euphoria to frank psychosis. Depression and anxiety, including panic attacks, are common.

Women usually have excess hair growth (hirsutism) on their faces, necks, chests, abdomens, and thighs. Their menstrual periods may become irregular or stop (amenorrhoea). Men have decreased fertility with diminished or absent desire for sex.

Other symptoms include excess sweating, telangiectasia (dilation of capillaries, spider veins), atrophy of the skin (which gets thin and bruises easily) and other mucous membranes, proximal muscle weakness (hips, shoulders).

The excess cortisol may also affect other endocrine systems and cause, for example, reduced libido, impotence and infertility.

Untreated Cushing's syndrome can lead to heart disease and increased mortality. Excess ACTH may also result in hyperpigmentation of the skin.

For a more complete list of Cushing's Symptoms, see the Cushing's Checklist. Many tests are done to determine if a person has Cushing's. You can find a listing of them here.

The message boards are very active and we have weekly online chats, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum in honor of Dr. Harvey Cushing's birthday April 8, phone support and much more. Whenever one of the members of the boards gets into NIH, we try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Who Gets Cushing's?

People just like YOU!

For more information, please see our main site at http://www.cushings-help.com/

Latest Activity

Alan Dp added a blog post
We are currently conducting a clinical trial on the use of Corlux (mifepristone) in the treatment of the signs and symptoms of Cushing's syndrome. For patients who had failed pituitary surgery or radiation therapy or those who have been uncontroll...
September 8
Alan Dp is now a member of CushingsHelp
September 8
Mary added a blog post
Are always listed here: Cushing's Newsletters The most recent is April 23, 2009 In This Issue Welcome to the latest Cushing's Newsletter! Cushie Bloggers Upcoming Interviews Upcoming Meetings Podcasts Cushing's on Facebook and Twitter Med...
April 23

Cushing's PodCast

Laura (LauraNG), October 29, 2009- Interview #56

Laura has been struggling since 2007 with various odd things happening to her body. In March of 2009 she was diagnosed with Hashimoto's Disease and Hypothyroid. Her bio contains a long list of symptoms she has and she has been misdiagnosed with Obesity, Diabetes, Kidney stones, Depression, MS, Manic/Depressive, TIA, Anxiety - stress, Not exercising enough, Not eating properly, Abusive relationship (due to bruising). In responding to the email confirming this interview Laura wrote: "When I started reading the bio's of people like myself, I started to cry tears of relief that what I may have, is actually ONE real thing. I cannot tell you how happy I was to find your website and I think it is wonderful that so many people who truly understand how frustrating it is to think we are alone, are willing to put themselves out there as beacons of hope for the rest of us. I felt so strongly, that I wanted to add my bio and offer myself for interview. If I can help one person feel a little calmer while they go through this process, I am more than willing. I don't know if I have Cushing's but if I do, it is important to me to reach out to others because the attacks coming from the physical and mental side of this illness, deserve to be exposed and recognized. Even though I am feeling a bit humiliated, reclusive and embarassed because of what it is doing to me." Read Laura's entire bio at http://www.cushie.info/index.php?option=com_content&view=article&id=413:laura-undiagnosed-bio&catid=32:bios&Itemid=68

Jon - September 18, 2009- Interview #55

Jon's first pituitary surgery was with an inexperienced surgeon. He took Ketoconozole until his second surgery at UC San Francisco June 2nd, 2009.

Elizabeth (Beth) - Aug 06,2009 - Interview #54

Elizabeth has been sick for about 5 years. She was diagnosed with the start of cervical cancer so she had a LEEP done. Her cortisol level was still high so she went to Johns Hopkins and an endo there diagnosed her with Cushing's in May of 2009. Her pituitary tumor was removed in June 2009.

Lynn (Lynn) - June 18, 2009 - Interview #53

Live interview June 18, 2009, 7:30PM EST Lynn had a left adrenalectomy in 2000. In 2004 Lynn had a Thyroidectomy due to tumor which was malignant on the biopsy, yet benign at surgery. In May 2009 she learned she had a 3mm anterior pituitary tumor. She is a patient of Dr Ted Friedman.

Interview with Gina (gmcook3), February 12, 2009

Gina was diagnosed with cyclic Cushing's Disease in August 2008 and has a 3-4 mm abnormality on her pituitary gland and a possible adrenal problem. Read her entire bio at http://www.cushings-help.com/ginac.htm

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!

Gail (Dolly) - Mar 19,2009, Interview # 52

Gail was originally diagnosed with Cushing's in 1988. At that time she had a pituitary tumor removed. She was okay for about 10 years and the Cushing's occurred again. Her tumor was removed, as well as her pituitary glands. In 2003, it reoccurred and she had her adrenal glands removed. She is now experiencing all symptoms again and her Endo is puzzled since Gail has no glands, and has undergone radiation. The endo thinks maybe she now has Nelsons Syndrome. It has been a long battle because of the Cushing's, over 21 years, and it has effected her life dramatically.

Dr Ted Friedman (Dr. F.) Interview, Part 2, March 12, 2009

Part 2, Theodore C. Friedman, M.D., Ph.D. has opened a private practice, specializing in treating patients with adrenal, pituitary, thyroid and fatigue disorders. Dr. Friedman has privileges at Cedars-Sinai Medical Center and Martin Luther King Medical Center. His practice includes detecting and treating hormone imbalances, including hormone replacement therapy. Dr. Friedman is also an expert in diagnosing and treating pituitary disorders, including Cushings disease and syndrome. Some of the topics covered: What is Cushing's?; 17-hydroxy; ACL (lab); acne; ACTH; adrenal; atrial myxoma; awareness; birth control pills; Carney Syndrome micronodule adrenal; CBG globulin; central hypothyroidism; circadium rhythm; cortisol; creatinine; cyclic Cushing's; depression; dexamethosone supression tests; Diabetes Insipidus; ectopic; endoscopy; Esoterix; estrogen; fingerstick machine; genetic testing; growth hormone; hormones; hump; hyperplasia; incidentaloma; IPSS; LabCorp; LH, FSH; libido; Liddle test; lung; Lynette Nieman; memory; MEN1; Nelson's Syndrome; NIH; optic nerve; parathyroid; PCOS; periods; pituitary MRI; pituitary; psych disorders; salivary cortisol; stretchmarks; surgeons; symptoms; testing; testosterone; thymus; tired; tumor; UFC; ultrasound; Vanderbuilt; weight; wired at night

Cushing's Help Interview # 50: Ami (ADDflower) - Mar 06,2009

Ami had pituitary surgery on January 27, 2009 at UCI University Hospital. Her doctor has been trying to figure out what is wrong with her for 12 years, but she really only joined her crusade 3 years ago, being unwilling to be sick.

Cushing's Help Interview # 49: Tammie (makeitgreen) - Feb 27,2009

Gina was diagnosed with cyclic Cushing's Disease in August 2008 and has a 3-4 mm abnormality on her pituitary gland and a possible adrenal problem. Read her entire bio at http://www.cushings-help.com/ginac.htm

Interview with Melissa (MELISSA74) - Feb 05, 2009

Melissa had pituitary surgery in October, 2008. She had recently had a baby so all her symptoms had been supposed to relate to her pregnancy. Melissa's brain MRI came back normal. She had a lot of other testing and the neurosurgeon finally saw an area that looked worthy of removal. Her surgery was successful and she has weaned off her cortisol.

Dr Ted Friedman (Dr. F.) Interview, Part 1, January 29, 2009

Theodore C. Friedman, M.D., Ph.D. has opened a private practice, specializing in treating patients with adrenal, pituitary, thyroid and fatigue disorders. Dr. Friedman has privileges at Cedars-Sinai Medical Center and Martin Luther King Medical Center. His practice includes detecting and treating hormone imbalances, including hormone replacement therapy. Dr. Friedman is also an expert in diagnosing and treating pituitary disorders, including Cushings disease and syndrome. Some of the topics covered: What is Cushing's?; 17-hydroxy; ACL (lab); acne; ACTH; adrenal; atrial myxoma; awareness; birth control pills; Carney Syndrome micronodule adrenal; CBG globulin; central hypothyroidism; circadium rhythm; cortisol; creatinine; cyclic Cushing's; depression; dexamethosone supression tests; Diabetes Insipidus; ectopic; endoscopy; Esoterix; estrogen; fingerstick machine; genetic testing; growth hormone; hormones; hump; hyperplasia; incidentaloma; IPSS; LabCorp; LH, FSH; libido; Liddle test; lung; Lynette Nieman; memory; MEN1; Nelson's Syndrome; NIH; optic nerve; parathyroid; PCOS; periods; pituitary MRI; pituitary; psych disorders; salivary cortisol; stretchmarks; surgeons; symptoms; testing; testosterone; thymus; tired; tumor; UFC; ultrasound; Vanderbuilt; weight; wired at night

Interview with Arubiana, January 22, 9:00PM

Arubiana has attended Dr. William Ludlam's "Camp Cushie" to do definitive Cushing's testing. They found a microadenoma on the left side of her pituitary gland. She will be going to be having surgery with Dr Mayberg in March/April of 2009. In addition to seeing various doctors, Arubiana has seen an accupressurist for help with sleep and general health.

How can I convert to my Time Zone? Go to: http://www.globalmetric.com/time

The first Audio Cushing's announcement: upcoming interview with Dr Ted Friedman

This first "test" announcement is about the upcoming interview with Dr Ted Friedman. Note that the date of this interview has changed to January 29, 2009 at 8:30PM eastern. Future audio announcements will include other news items and happenings in the Cushing's Community.

Interview with Barbara (2maro), January 8, 2009

Barbara (2maro) had surgery at MD Anderson with Dr. McCutcheon who removed her pituitary tumor transphenoidally. Miraculously, over the next 9 months, she lost 100 pounds. She is no longer diabetic and did not have high blood pressure until 2008.

Robin and MaryO discuss...everything, November 21, 2008

Our guest didn't call in so Robin and MaryO discussed a bit of everything from doctors to blogs, to the non-profit, to pending tests to any and everything.

Interview with Cyndie (aautomo884) - Nov 14,2008

MaryO interviewed Cyndie (aautomo884). Cyndie started having symptoms 2004. She had 2 Parathyroid Adenomas removed June 2007. She is now ruling out MEN 1.

Interview with Kay (Casperslove) - Nov 07, 2008

MaryO and Robin interview Kay. Kay is mom to 6 year old twins and was "officially" diagnosed with Cushing's in February 2008. She had surgery to remove the pituitary tumor causing the Cushings in June of 2008. She is in the process of weaning off steroids orally. She documents her post-op experiences in her blog. She did some of her testing at Dr. Ludlam's "Camp Cushie".

Keywords: acne, ACTH, anxiety, blood tests, cortisol, CT scan, dexamethosone test, diabetes, Dr. Mayberg, endocrinologist, estrogen, fatigue, growth hormone, hyperplasia, IPSS, miscarriage, MRI, neurosurgeon, PCOS, pituitary, prolactinoma, salivary, surgery, thyroid, UFC, urine, wean, weight

Second Interview with Gracie (fatnsassy) - Oct 24, 2008

Join us as Mary O'Connor (MaryO) interviews Gracie again. Gracie (fatnsassy) has been dealing with Cushing's symptoms for about 14 years. She began testing in California with Dr. Ted Friedman June, 2007 and she was diagnosed in May, 2008 with cyclical Cushing's disease. She saw Dr. Hae-Dong Jho and arranged for her pituitary surgery in Philadelphia, Pa, in August, 2008. This is her first post-op interview.

Interview with Stacey (stacey) - Oct 17, 2008

Join us as Mary O'Connor (MaryO) and Robin Smith (staticnrg) interview Stacey. Stacey will be one year post-op at the time of the interview. She will have been to her 1 year appointment and will give a full update of her recovery.

Interview with SusanM - Oct 09, 2008

Join us as Mary O'Connor (MaryO) and Robin Smith (staticnrg) interview long time Cushing's patient Susan (SusanM). Susan writes: Susan writes: As you may have read in my other post, I retired from a 28-year career at a major health insurance company (one of the big five) on March 31. 2008. I am happy with this achievement, however, much more proud of the actions I took to reach that achievement. Why so? For 27 of those 28 years, I had faced Cushings and we all know what difficulty that may bring. In 2003, I had the pit surgery and became quite ill in 2004. It wasn't until November, of 2005 that I had the BLA which brought about some relief. During all of this, I worked full time consistently until 2004 when I had to take some time off of work. I was GH deficient and had the episode of congestive heart failure. Once back at work, I applied for a work accommodation to work at home on Monday and Friday under the Americans with Disabilities Act. It was granted and I was provided with a full computer set up at home as well as the one at work. This made a great difference in my being able to work or not. Not driving the 26 miles each way to work as well as being at home continued my work. Another thing I did was to work with my PCP to be accepted into the Physical Rehab at the local hospital. It provided medically-monitored exercise (up to 5 days a week) and my muscles recovered well during this time. I had difficulty with shortness of breath due to the weak muscles around my lungs and this was a positive step to correct that situation. What else did I do to keep myself working during this timeframe? I worked incredibly hard on achieving a positive mental attitude! I meditated, performed self-hypnosis, and found a support system that worked for me. This foundation made the better days better and difficult days a bit less difficult. Can someone with Cushings continue working? In my opinion, YES.
 
 

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