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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.

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Blog Posts

This week in VoiceChat

StaceyJenn, April 3. StaceyJenn was diagnosed with adrenal insufficiency, hypothyroidism, and a host of other ailments in 2001 (candidiasis, intestinal permeability, 22 latent food allergies).

Once diagnosed, she was on specially formulated hydrocortisone for 7 years as she was allergic to the fillers in the meds. Her doctor stopped practicing and she was transferred to his associate. She switched StaceyJenn to…

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Posted by Mary on March 29th, 2008 at 11:55pm — No Comments (Add)

This week in VoiceChat

Monica (Monicaroni) and Crystal (Vinesqueen), March 27, 2008. The Call-In number is (646) 200-0162.

Crystal and Monica went through every step of their Cushing's journey together--tested together, had surgeries the same days, and have become best friends because of it.

Monica was diagnosed with Cyclical Cush…

Continue

Posted by Mary on March 22nd, 2008 at 1:40pm — No Comments (Add)

 

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

Mary Mary added 2 new blog posts. View Mary's blog posts Mar 22
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CushingsHelp now has a forum Mar 10

Cushing's PodCast

Interview with FerolV, pituitary survivor - May 08,2008

Ferol started noticing irregular symptoms in her late 20's, but more developed since 2001, and rapidly more chronic as time went by. Finally at her March 2005 physical, she had enough symptoms listed for her GP to start getting the connection to Cushings'. She was immediately referred to Dr. Adam Spitz, endocrinologist, with a battery of tests confirmed the initial diagnoses. An MRI confirmed the tumor involvement and pituitary surgery was performed 09-30-05.

Interview with Monica (Monicaroni), May 1, 2008.

Monica returned to talk about the challenges she's faced maintaining her music career while in testing and treatment.

Monica was diagnosed with Cyclical Cushing's. She had pituitary surgery in November 2006. An 8mm encapsulated pituitary tumor was removed. Since there was no post-op crash, she also had a BLA in December 2006. Both surgeries were in Seattle. She is now free of Cushing's and is on the road to recovery!

Interview with Kevin, Monica (Monicaroni)'s husband, April 24, 2008

Listen as Kevin discusses his role as caretaker and spouse. At the time of this chat, Kevin was bringing Monica home from the hospital. She had just had another Adrenal Insufficiency episode. Kevin is also Monica's producer/ manager. He has been a tour manager and sound engineer in the music industry his whole life and has worked with many of the greats in the industry. For the two years during Monica's diagnosis and surgeries he worked from home as a computer programmer so that he could take care of Monica. Monica and Kevin were married two years ago, just before Monica's pituitary surgery. Monica and Kevin spent their honeymoon in Portland at OHSU doing one of her several "camp cushie" trips.

Interview with Terry (Terry), April 17, 2008.

Terry (Terry), April 17. Long time pituitary Cushing's survivor. Terry had a pituitary surgery (in LA) in October of 2003 which did not cure her Cushing's Disease. Then, Dec 13th, 2003 she had her BLA in a Wisconsin hospital. She also had an infection in her sphenoid sinus. It originated at the site of her pituitary surgery from October 2003. She had to be on a lot of antibiotics and narcotic pain relievers. In Sept 2005 the surgeon removed infection from one area, make another area clear to allow for better drainage, checked her bone and found one area okay but took bone for culture from another area. Terry has had an infection requiring a post-op PICC line.

Interview with Steven Owens (sowens)

Steven (sowens) is from Ohio Steve was diagnosed with HyperBeta Adrenergic Syndrome in August, 2005. Doctors thought he might have a pheo, now they're checking for ACC cancer. Steven also has a newspaper article written about him. Steve's daughter may also have Cushing's.

Cushing's Awareness Day Special Chat

Jayne Kerns and Robin Smith (staticnrg) hosted a Cushing's Awareness Day Special Chat This chat had callers and some testimonials for the website and Mary O'Connor (MaryO). Ideas were discussed for setting up non-profit status for this website.

Interview with Jenn (StaceyJenn), April 3, 2008

Jenn was diagnosed with adrenal insufficiency, hypothyroidism, and a host of other ailments in 2001 (candidiasis, intestinal permeability, 22 latent food allergies). Once diagnosed, she was on specially formulated hydrocortisone for 7 years as she was allergic to the fillers in the meds. Her doctor stopped practicing and she was transferred to his associate. She switched Jenn to medrol. After Cushing's symptoms, a new endo started weaning her off the medrol and she had many problems. Read Jenn's bio at http://www.cushings-help.com/staceyjenn.htm

Interview with Monica (Monicaroni) and Crystal (Vinesqueen), March 27, 2008.

Crystal and Monica went through every step of their Cushing's journey together--tested together, had surgeries the same days, and have become best friends because of it. Monica was diagnosed with Cyclical Cushing's. She had pituitary surgery in November 2006. An 8mm encapsulated pituitary tumor was removed. Since there was no post-op crash, she also had a BLA in December 2006. Both surgeries were in Seattle. She is now free of Cushing's and am on the road to recovery! Crystal had pituitary surgery surgery 11/06 followed by a BLA 12/06. She also had a sinus excavation 2/06 and sinus surgery 5/07. Her last surgery was an internal hernia repair 8/07

Interview with Karen Nolan (rooon55) a cyclical Pituitary Patient, part 2, March 20, 2008

Karen (Rooon55), part 2, March 20, 2008. Karen's disease started when she was a little girl (7) and she finally got a diagnosis in 2005. She had cycling Cushing's, Thyroid disease, GH deficiency, and Auto immune Alopecia. She believes she is cured after two Pituitary surgeries. A doctor didn't advise Vermont's Karen Nolan (Rooon55 on the boards) that she might be one of the scant 3.5 per million people diagnosed annually with Cushing's disease - another Cushing's patient did.

Cushing's Diagnosis and Symptoms, part 2

March 13, 2008: Robin Smith (staticnrg) and Mary O'Connor (MaryO) hosted as Cushing's message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing's is and what the symptoms are.

Mary OConnor (MaryO) interviews Robin Smith (staticnrg), Part 2 - March 6, 2008

Mary OConnor (MaryO) interviews Robin Smith (staticnrg),Part 2 - March 6, 2008. Robin had Cushing's for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom she found in 2004 said "endocrine". She didn't figure it out, either, but at least Robin had a piece of the puzzle and she found http://www.cushings-help.com.

JenS discussed Bilateral Adrenalectomies (BLAs)

Jen had Pituitary surgery by Dr. Shahinian 4/28/04, removed ACTH secreting corticotroph hyperplasia and prolactinoma.

She was diagnosed by Dr. Ted Friedman with cyclical pituitary Cushings. Her second Surgery 7/21/04 for infection resulted in neuralgia.

She had a BLA in March 2006 as Corticol Hyperplasia returned and she now has possible Nelson's syndrome. Jen also has Thyroid Issues (Hashimoto's, multiple nodules and entire thyroid removed 2003) and she is Growth Hormone Deficient (3/2006); Panhypopituitary (5/2007). Her latest medical issues are possible Myasthenia Gravis or other motor neuron issue (7/2007) and Hypoparathyroid (9/2007)

Jen talked about Bilateral Adrenalectomies (BLAs) and answer your questions.

Interview with Karen Nolan (rooon55) a cyclical Pituitary Patient, part 1, February 21, 2008

Karen (Rooon55), February 21, 2008. Karen's disease started when she was a little girl (7) and she finally got a diagnosis in 2005. She had cycling Cushing's, Thyroid disease, GH deficiency, and Auto immune Alopecia. She believes she is cured after two Pituitary surgeries. A doctor didn't advise Vermont's Karen Nolan (Rooon55 on the boards) that she might be one of the scant 3.5 per million people diagnosed annually with Cushing's disease - another Cushing's patient did.

Mary OConnor (MaryO) interviews Robin Smith (staticnrg), Part 1 - Feb 14, 2008

Mary OConnor (MaryO) interviews Robin Smith (staticnrg), Part 1 - Feb 14, 2008. Robin had Cushing's for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom she found in 2004 said "endocrine". She didn't figure it out, either, but at least Robin had a piece of the puzzle and she found http://www.cushings-help.com.

Interview with Alicia, a Cushing's Message Board member who is still testing.

MaryO and Robin interview Alicia, who is still testing for Cushing's.

licia writes "Around the end of my Junior year, probably one of the worst things that could have happened during my 8 years of illness happened, I had severe psychiatric symptoms at school, including psychosis, and was put on a 'students in crisis' plan and sent home for a little while. Being diagnosed as a 'psych patient' would delay my diagnosis for years, most doctors just considered me "crazy."

Mary O'Connor (MaryO) interviews Jayne, Ectopic Cushing's Patient.

Mary O'Connor (MaryO) hosts an interview with Jayne, a Cushing's patient who had pituitary surgeries and a bilateral adrenalectomy before finding the true source of her ectopic Cushing's.

Jayne also had a miracle baby despite her illness, which usually makes women infertile. She was featured in her local paper. Jayne has seen several potential Cushies and spoken to them. Many have contacted their doctors and turned out to have Cushing's Syndrome. She was also instrumental in setting up the first Cushing's Awareness Day and continues to provide Cushing's Awareness tables at local health fairs. One of the patients Jayne urged to check out Cushing's is Laura Zastrow. In the article about Laura, the credit is given to Jayne.

Interview with Judy, mother of two Cushing's patients, and daughter Jess

January 17, 2008: Robin Smith (staticnrg) hosts an interview with Judy, the mother of two Cushing's patients, and her daughter, Jess, a high school student diagnosed with Cushing's. Both children have been diagnosed with pituitary adenomas and are waiting for surgery. Items covered include the difficulty in getting a diagnosis; dealing with family and friends; attending school through the diagnostic process and more.

Cushing's Diagnosis and Symptoms

January 10, 2008: Robin Smith (staticnrg) hosted as Cushing's message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing's is and what the symptoms are.

Interview with MaryO, Cushings-Help.com founder

January 3, 2008: Listen as Robin Smith (staticnrg) interviewed Mary O'Connor (MaryO), founder of Cushings-Help.com and 20-year pituitary Cushing's Survivor. Mary is a 20 plus year survivor of Cushing's Disease. For those who do not know what Cushing's Disease is, you may want to peruse the Cushings-help website. Briefly, it is an endocrine-related disease caused by a pituitary tumor (also called an adenoma) which causes life-threatening symptoms. Cushing's Syndrome is a similar disease caused by an adrenal or other tumor.

Robin (Staticnrg) explains how diurnal variation and circadian rhythm is useful in diagnosing Cushing's.

Robin (Staticnrg) explains that diurnal variation is one of the ways to diagnose Cushing's. It's typical of those of us who have Cushing's Robin says "If you have pseudo-Cushing's, this variation doesn't happen. A typical/normal person has their highest cortisol around 8 a.m. and it goes down incrementally until it is around zero at midnight. This is true of a person with pseudo Cushing's, too. A person with Cushing's Disease/Syndrome will have the variation shown in the link above. It's important to have this measured. The easiest way to find out is to have late-night serum cortisol measurements (around 11 p.m.) to see what it is at that time of night. If you have elevated late-night cortisols, it indicates Cushing's Syndrome/Disease. One test in the a.m. will not tell you enough information. Stress affects everyone's cortisol. But elevated cortisol over a period of time is due to something other than "stress". And it hurts your body. Even it is intermittent (cyclical), it is very damaging, but harder to diagnose. I hope you will go for more testing. I believe you need to find a doctor who will test 8 a.m. cortisol levels and late-night cortisol levels, preferably by both salivary and serum tests. Also, high Urinary Free Cortisol (UFC) levels are the "gold-standard" for Cushing's and if high, are very indicative. However, many of us don't have high UFC's but do have high salivary and serum levels. You need MUCH more testing to determine if you have Cushing's and to determine if your diurnal rhythm is out-of-whack!"
 
 

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