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From http://www.seacoastonline.com/news/11302006/health-f-n30-cushings-n29.html

11-30-2006
'The ugly disease'
By Toby Hatchett
features@seacoastonline.com

Complete Health Index

When Fedela Vincent, 68, of Rye, was diagnosed with Cushing's disease, she was relieved, almost happy. After more than three years, she knew what was wrong with her.

Vincent had spent years trying to figure out what was wrong with her, what was happening to her and her body. A petite woman, of 5 feet, she had always been trim and fit. She ate right, worked out at the gym and led a healthy lifestyle.

But, for no apparent reason, she began to gain weight. Lots of weight, primarily in the upper body.

"I looked like an apple, with a moon face," Fedela says. "Cushing's is not called �the ugly disease' for nothing."

Cushing's disease victims don't share the same symptoms, but many of the symptoms are physically noticeable: the extreme weight gain in the upper body, the moon face, a buffalo hump on the back, hair loss and blotchy, red skin with breakouts.

"Feeling constantly cruddy" is the polite description of being a Cushie," Fedela says.

Then there are the other symptoms, those not visible on the outside. Fedela says the worst for her was the insomnia, the anxiety, the fear of abandonment and pain. The joints hurt, the muscles lose their mass and walking is difficult.

When Fedela was at her worst, she couldn't walk up the stairs, let alone cook or shop. She was as weak as a kitten, she says.

Her doctors at this time urged her to lose weight, giving medications that often made her sick in an effort to solve the problem.

Bob Vincent, her husband of 48 years, never left her side during this difficult time. Cushing's disease is such a traumatic disease that it is estimated more than half of husbands leave their wives. The mood swings can be dramatic.

"When Bob would bring me coffee," says Fedela, "he never knew what to expect."

Then Fedela decided to try a different kind of doctor. She went to Dr. Jennifer Warren, in Hampton, who specializes in weight control. In Warren, she found someone who listened to her and paid attention. Warren was the first doctor to suggest Cushing's disease might be the cause of Fedela's weight gain.

From that moment on, things began to happen. Fedela went to Dr. Daniel Nadeau who put her on a diabetes-related medication for weight loss. This didn't work and after a month, she was given a simple urinalysis test. Within 24 hours, she had her diagnosis.

Nadeau referred Fedela to the Lahey Clinic, in Burlington, Mass. There she met the doctor she now calls her "savior," Dr. Nicholas Tritos. This clinic is world-renowned for its work in pituitary malfunctions.

What is Cushing's disease? It is the body reacting to a constant overdose of steroids being released by the adrenal glands. The pituitary gland over-stimulates the adrenal glands, which in turn send crisis-level chemical messages to all the other endocrine glands.

"The body reacts to the hyper-stimulation by constantly being in a state of fight or flight," says Fedela. "It's 24/7 with no relief."

Cushing's disease affects an estimated 10 to 15 out of every million people. The fact that it is relatively rare in numbers is one cause of the lack of public knowledge and awareness of this disease.

Non-diagnosed, Cushing's disease can lead to uncontrollable diabetes, and eventually, death. The symptoms can be so varied and mimic so many other conditions, that Cushing's disease is often not diagnosed or misdiagnosed.

"The not knowing what is wrong with you is awful," Fedela says, "and the way people look at you when you're not what society calls �normal.'"

"People would tell me �you are what you eat' and suggest I try Weight Watchers, things like that."

But Fedela was carefully watching what she ate, often eating less than her doctors prescribed. Even when her energy level was almost non-existent, she and her husband would go to the gym.

"Bob wouldn't let me stay inside. We kept going out, for drives, to Market Square and lunch with friends."

After the initial diagnosis, Fedela spent six months undergoing various tests.

Then, on Mother's Day of this year, during the New Hampshire floods, she was operated on. Fifty percent of one side of the pituitary was removed and 25 percent of the other side to remove the offending tumorous tissues.

Fedela spent five days recovering at the Lahey Clinic.

"The whole staff was just wonderful. The nurses would pop in to see what a Cushie looked like. They never left me alone."

When she came out of the surgery, Bob was there beside her, along with a very special teddy bear.

"The teddy bear was hugged by members of South Church, including the children Fedela taught in her kindergarten class," he said.

The blessing of this disease, as Fedela describes it, is in learning how to receive. Having long been a giver herself, this was not an easy lesson to learn. South Church, in Portsmouth, put together a Fedela Vincent Support Group, with people from Portsmouth, Rye, Salem, Mass., and Greenland, to provide moral support, company and meals. For six weeks, day and night, someone was there.

"South Church is an amazing institution," Bob says. "The support group was invaluable. Fedela received over 250 cards from all over the country."

This support group is still there for Vincent as she continues to recover and regain her health. She still has problems, but she can now lead a more normal life. "I can shop!" she says with a grin.

"I wanted to do this interview as a call to the medical community to be alert to the symptoms of Cushing's disease and to really listen to their patients."

Fedela also hopes that by sharing her story, others may learn that diet alone is not always the cause of weight gain. America's obsession with skinny bodies and the resulting negative judgmental views on those who do not fit this picture is something she hopes people may think twice about before making judgments.

Lastly, Fedela wants to publicly thank her husband, family, friends and physicians who have stood by her during this difficult struggle. She still has a long way to go, but she is on the mend now and knows what was wrong with her.

"The not knowing what was happening to me was the worst of all."

"If by telling my story, I can help even one person not go through what I did, then it's worth it."

Tritos, a leading endocrinologist at the Lahey Clinic, says it is common for Cushing's disease to not be immediately diagnosed.

"It is common because the condition itself is uncommon. The symptoms are subtle and can be attributed to other causes."

"In Fedela's case, her own body was producing an overload of steroids."

There is a peculiar type of weight gain, in the face, neck and upper torso. Unfortunately, it can take awhile to be diagnosed.

"Most patients go from one doctor to another before Cushing's disease is diagnosed."

Also, Tritos says, sometimes the tests are inconclusive.

But once on the appropriate path, most patients can be helped.

Tritos also notes the value of a good support system, which Fedela had in place.

"The support of family and friends is very important. By telling her story, Mrs. Vincent will increase the public's awareness of Cushing's disease."

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From http://www.associatedcontent.com/article/86638/understanding_cushings_syndrome.html

Understanding Cushing's Syndrome
By Kori Rodley Irons

November 21, 2006

Cushing's Syndrome, also known as hypercortisolism, is a condition characterized by abnormalities produced by excessive amounts of the hormone cortisol - or by excessive use of cortisol or another similar sort of steroid hormones. While this used to be a naturally-occurring condition due to a malfunction of the adrenal glands, it is becoming increasingly common as a result of abuse of steroids.

Cortisol production in the body is actually regulated by adrenocorticotrophic hormone or ACTH, which is made in the pituitary gland. The pituitary gland is located just below the brain (the adrenal glands are located just above each kidney). Cushing�s syndrome results when too much cortisol is produced in the adrenal glands, or too much is taken internally from external sources. This causes major changes and affects in the tissues and organs of the body.

Cortisol normally regulates the body�s response to stress. Cortisol works to mobilize nutrients, stimulate the liver to raise blood sugar, help control the amount of water in the body and to help modify the body�s response to inflammation.

When abnormalities result from Cushing�s syndrome, some people may show dramatic changes in health and appearance. There is a tendency to gain weight and �bulk up� especially around the trunk and abdomen. The face may become round and �moon-like,� there may be a thinning and weakness of the muscles of the upper arms and/or legs and the skin may appear thin and bruise easily. There may also be increased acne, facial hair growth and both men and women may look more masculine. Symptoms may also include weariness and fatigue, depression, mood swings, increased thirst and need for urination and a lack of menstrual cycles in women.

A doctor will perform tests, screenings and a physical exam to confirm the presence of Cushing�s syndrome, and rule out other disorders. This is a rather rare disease, occurring in only about 25 people per 1,000,000 each year, so the doctor will be testing for other conditions as well. Evaluation will likely take several days and will involve testing for excess cortisol via blood and urine tests, as well as a variety of other tests and procedures.

Upon a positive diagnosis of Cushing�s syndrome, treatment will depend on the severity and the cause of the disease. If it is caused by taking steroid hormones, treatment will involve withdrawal and management of this condition. In some cases, the best treatment will be the surgical removal of the pituitary tumor, or sometimes the entire pituitary gland.

Recovery also depends on the severity of the disease. Treatment is usually a long, slow process taking months, and potentially, years. The outcome will depend on the degree of the syndrome and the cortisol excess, how long the disease has been present, the overall health of the person affected, and why the type of syndrome and symptoms each case of Cushing�s syndrome presents. A person will be working with an endocrinologist, in addition to his or her regular doctor. An endocrinologist is a doctor who specializes in hormonal diseases.

From http://www.associatedcontent.com/article/90308/weight_loss_vs_weight_gain_its_your.html

Weight Loss Vs. Weight Gain: It's Your Choice
I Take Responsibility for Yourself
I By Catherine Neal
I December 6, 2006

In a world where a lot is based on image, it is hard to keep up with what the media and insurance agencies say what we should weigh. I know that there are a lot of factors that deals with the increase in body fat. I know that hereditary genes, chemical imbalances, illnesses, medications, stress, lack of exercise and availability of food are all parts of the battle of weight loss.

The problem with people today is that we use these factors as excuses and crutches for our health. How many times have you heard "Everyone in my family is large.", "I have a thyroid problem.", "my medication makes me gain weight.", "I eat because I'm stressed." "I can't exercise it's snowing.", "I just love food.", "My diet didn't work." It's time to stop making excuses and take control of our health.

So you have hereditary genes that cause people in your family to be large. Are you sure? I mean cultures have different views on body size but do Irish people have more body fat cells than Russians? There is not much scientific evidence to show that this is true. I think people just use it as an excuse. Take control of your life and stop using it as an excuse.

Sure there are medical problems and medications that cause us to gain weight. Drugs Prednisone, Elavil, Tofranil, Zyprexa, Paxil, Zoloft, Depakote, Diabeta, Dianbinese, Cardura, Indera, Nexium, and Prevacid can cause weight gain. Did you know that there are nearly fifty medications that can cause weight increase? The medication weight gain can be modest or extreme. I know that many of us have to take these medications to survive. That doesn't mean that we should use the weight gain as an excuse. We need to educate ourselves on the side effects of the medications we are taking.

hTere are several illnesses that will cause weight gain. The major ones are Hypothyroidism. This is a condition where the thyroid gland, located in the neck, produces too little thyroid hormone. Thyroid hormone regulates our metabolism. So too little hormone slows the metabolism and often causes weight gain. If your doctor suspects thyroid disease as a cause of your obesity, he or she may perform blood tests to check your hormone levels.

Cushing's syndrome. This condition results when the adrenal glands (located on top of each kidney) produce an excess amount of a steroid hormone called cortisol. This leads to a build-up of fat in characteristic sites such as the face, upper back, and abdomen.

Depression. Some people with depression overeat, which can lead to obesity.

The best thing to do is to find out if any of your medications cause weight gain the minute that you get them. There are medications that can replace the medications that you are taking. If you're unable to change the medication, then combat the medication or disease from the starting point. In most cases a 45 minute walk per day will combat the possible weight gain. You will also want to nourish your body with vitamin rich foods and watch your daily caloric intake. Talk to your doctor about how often you should get tested for Hyperthyroidism and Cushing's disease.

Many of us eat because we like to eat and because of emotional factors. I know how easy it is to turn to food as an escape from your problems. The only problem is that food will not solve your problems. Taking steps to fix the problem is the only way to solve the problem. There are things that you can do if you're faced with a problem and want to turn to food.

1. Many people use prayer. It's a way of finding a quiet time to find a resolution to the problem. Plus you are running the problem over in your head and talking things out.

2. Seek counseling from your priest or a counselor. Your able to talk things out or at least voice yourself. It's much better than stuffing your feelings down inside with food.

3. Get away from the food and use a journal. Remember when we use to work out problems from school on paper? That's the same concept here.

Your diet didn't work. Not many do work because they do not teach us about foods that nourish our bodies. I can go to the diet section of any bookstore and see shelves and shelves of diets that are suppose to slim your figure. How about stop buying into the diet industry and use that money to talk to a nutritionist.

I think we would all be better off if we knew how many calories we should be eating from puberty. A person needs about 7 calories per pound to maintain their body weight. To lose one pound a week, a person needs to burn 500 calories each day. It is the simple equation weight loss= nutritious calories in - calories out. So if a sumo wrestler that weighs 500 pounds wanted to lose a pound a week he would need 3500 calories - 500 calories in exercise to lose weight.

There are tools out there that will help us achieve the things that we want to achieve. To help us stop making excuses for ourselves and keep on top of our health.

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Adrenal:

From http://neuro.psychiatryonline.org/cgi/content/abstract/18/4/450

J Neuropsychiatry Clin Neurosci 18:450-459, November 2006
doi: 10.1176/appi.neuropsych.18.4.450
� 2006 American Psychiatric Publishing, Inc.

Special Article
The Neuropsychiatric Profile of Addison�s Disease: Revisiting a Forgotten Phenomenon
Rebecca E. Anglin, B.Sc., M.D., Patricia I. Rosebush, M.Sc.N., M.D., F.R.C.P.(C.) and Michael F. Mazurek, M.D., F.R.C.P.(C.)

Received November 2, 2005; revised January 8, 2006; accepted January 19, 2006. Drs. Anglin and Mazurek are affiliated with the Department of Medicine and Department of Psychiatry and Behavioral Neurosciences, McMaster University, Hamilton, Ontario, Canada. Dr. Rosebush is affiliated with the Department of Psychiatry and Behavioral Neurosciences, McMaster University, Hamilton, Ontario, Canada. Address correspondence to Dr. Rosebush, 3G15, Health Sciences Center, 1200 Main St.W, Hamilton, Ontario, L8Z 3N5, Canada; rosebush@hhsc.ca (E-mail).

One hundred fifty years since Thomas Addison�s original description of the disease, it is not commonly appreciated that patients with Addison�s disease may present with psychiatric symptoms. A review of the literature indicates that disturbances in mood, motivation, and behavior are associated with Addison�s disease. Psychosis occurs less frequently, but can be the presenting symptom of a life-threatening adrenal crisis. Potential mechanisms for the neuropsychiatric symptoms of Addison�s disease include electrophysiological, electrolyte and metabolic abnormalities, glucocorticoid deficiency, increased endorphins, and an associated Hashimoto encephalopathy. Physicians must be aware that Addison�s disease may present solely with psychiatric symptoms and maintain a high index of suspicion for this potentially fatal condition.

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You may access this article (from the computer you are currently using) for 1 day for US$15.00 at http://neuro.psychiatryonline.org/cgi/reprint/18/4/450

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