Addison's Disease

Medical Codes

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ICD-9-CM:

255.4 - Disorders of Adrenal Glands, Addisons Disease (Corticoadrenal Insufficiency)

255.5 - Disorders of Adrenal Glands, Other Adrenal Hypofunction; Adrenal Medullary Insufficiency

279.4 - Autoimmune Disease, Not Elsewhere Classified; Autoimmune Disease NOS

 

Definition

Addison's disease (adrenal insufficiency) occurs when the outer layer of the adrenal gland, the cortex, is damaged, causing it to produce insufficient amounts of certain corticosteroid hormones that are essential for life. The three types of corticosteroids are androgens and estrogens, which affect sexual development and reproduction; glucocorticoid hormones such as cortisol, which maintain glucose regulation, suppress immune responses, and provide stress responses; and mineralocorticoid hormones such as aldosterone, which regulate sodium and potassium balance.

Adrenal insufficiency can occur for a variety of reasons. In 70% of cases of primary adrenal insufficiency, the body's immune system attacks and slowly destroys the adrenal glands (autoimmune disease). Tuberculosis, once the most common cause of Addison's disease, is responsible for only about 20% of cases of primary adrenal insufficiency. Since the appearance of acquired immunodeficiency syndrome (AIDS), tuberculosis is once again on the rise and a corresponding increase in Addison's disease caused by tuberculosis is expected. Less common causes of primary adrenal insufficiency include chronic infections, particularly fungal infections and viral infections (cytomegalovirus or CMV) associated with AIDS; amyloidosis; hemorrhage of the adrenal glands; and surgical removal of the adrenal glands. Waterhouse-Friderichsen syndrome is primary adrenal insufficiency that occurs due to adrenal gland hemorrhage during meningococcal infection.

 
In secondary adrenal insufficiency, the adrenal glands are healthy but the body fails to stimulate them to release hormones. This occurs when the pituitary gland, which is located at the base of the brain, fails to secrete adrenocorticotrophic hormone (ACTH), which normally stimulates the adrenal gland to release cortisol. Causes of secondary adrenal insufficiency include long-term use of steroids such as prednisone or surgical removal of pituitary tumors, either cancerous or non-cancerous. Less common causes are loss of blood flow to the pituitary gland, surgical removal of a portion of the pituitary gland, or surgical removal of the area of the brain called the hypothalamus.

 

Risk: Addison's disease tends to run in families. Individuals who take steroids over a long period of time and then develop a severe infection, injury, or undergo a surgical procedure are at increased risk of developing Addison's disease. It is slightly more common among women than men. It can appear at any age but is more often diagnosed in individuals between the ages of 30 and 50 (Odeke). Other conditions that may be associated with adrenal insufficiency include diabetes mellitus, hypoparathyroidism, hypopituitarism, pernicious anemia, testicular dysfunction, Graves' disease, chronic thyroiditis, and myasthenia gravis.

 

Incidence and Prevalence: Addison's syndrome is a rare disorder, with a prevalence of 40 to 60 cases per 1 million people in the US and Europe (Odeke).

 

Diagnosis

History: In most cases of Addison's disease, symptoms appear gradually. Individuals often complain of progressively increasing weakness and fatigue, loss of appetite (anorexia), and unintentional weight loss. Many report dizziness or light-headedness especially when rising from a seated position. Abdominal pain, decreased tolerance to cold, hair loss (alopecia) particularly in women, and cravings for salty foods may also be reported. Nausea, vomiting, and chronic diarrhea occur in about 50% of cases. Women may report that their menstrual cycles have become irregular (dysmenorrhea) or stopped altogether (amenorrhea). Moodiness, irritability, or depression may be evident. In advanced cases, the individual may experience what is known as an Addisonian crisis characterized by abdominal pain; severe vomiting and diarrhea; hypotension; agitation, confusion and loss of consciousness.

 

Physical exam: Findings usually include low blood pressure (hypotension) that may worsen when the individual stands after sitting or lying down (orthostatic hypotension). The individual may be dehydrated. Skin changes are also commonly noted and include freckling and darkening of the skin. The skin darkening may resemble a deep tan but will be present even on parts of the body not exposed to the sun. The skin darkening may also be more visible on scars; pressure points, such as elbows, knees, and toes; lips; mucus membranes; and in skin folds.

 

Tests: The most specific test for Addison's disease is the ACTH stimulation test. In this test, blood is drawn to measure baseline levels of the hormones cortisol and aldosterone. Synthetic ACTH (Cortrosyn, cosyntropin, or Synacthen) is administered intravenously or by intramuscular injection. Blood is drawn again at 30 minutes to measure changes in the cortisol and aldosterone levels. In order to rule out the diagnosis of Addison's disease, there must be an increase in the baseline cortisol value by 7 mcg/dL or more, and the cortisol level must rise to 20 mcg/dL or more in 30 minutes (Odeke). In a healthy individual, the cortisol levels are higher after the injection of synthetic ACTH; in individuals with Addison's disease, there is little or no change in cortisol levels.

If an abnormal result is obtained, a variation of this test in which ACTH is given over a 2 to 3 day period may be conducted. Blood and/or urine samples are collected before and during this 2 to 3 day period. In this longer ACTH stimulation test, the cause of adrenal insufficiency can be determined. Primary adrenal insufficiency results in little or no cortisol production for the entire 72 hour period; secondary adrenal insufficiency, on the other hand, will show an adequate response by the second or third day. Elevated morning ACTH levels confirm a primary adrenal cause.

If the ACTH stimulation test is inconclusive, other tests may be conducted either to help confirm the diagnosis or help rule out other conditions. An insulin-induced hypoglycemia test evaluates the functioning of the pituitary gland and the hypothalamus. In this test, blood sugar (glucose) and cortisol levels are measured and then fast-acting insulin is given. The normal response is for glucose to fall and cortisol to rise, indicating a normal pituitary gland and hypothalamus.

Other blood tests that may prove helpful include a complete metabolic panel (CMP), a complete blood count (CBC) and a thyroid-stimulating hormone level (TSH). Individuals with Addison's disease generally have low sodium and cortisol levels, but high potassium, calcium, blood urea nitrogen (BUN), and creatinine levels. If the individual has not eaten prior to the blood test, there may be low blood sugar (hypoglycemia) and high ACTH levels.

When an autoimmune disease is the cause of adrenal dysfunction, adrenal antibodies may be present in the blood. An abdominal or chest x-ray may help reveal calcium deposits in the adrenal glands—a sign of tuberculosis infection. An abdominal CT may be performed to determine if the adrenal glands are smaller or larger than normal. Small adrenal glands may be a sign of autoimmune adrenal disease and larger than normal adrenal glands may be an indication of hemorrhage or infiltrative disease. Biopsies of the adrenal glands can rule out cancer.

 

Treatment

In the rare instances of Addisonian crisis, potentially life-threatening low blood pressure (hypotension), low blood sugar (hypoglycemia), and high levels of potassium (hyperkalemia) may occur. Individuals experiencing Addisonian crisis require immediate hospitalization. Treatment will include immediate intravenous (IV) or intramuscular (IM) injections of steroids along with saltwater (saline) fluid replacements and sugar (glucose). Oral steroid medications may also be given.

Most cases of Addison's disease, however, do not require inpatient treatment. The goal of therapy is to replace the hormones that the body is not producing. Oral steroid medications are usually a combination of glucocorticoids and mineralocorticoids and are taken for the remainder of the individual's life. The individual is counseled to avoid dehydration by drinking plenty of fluids. An identification and medical instruction bracelet is often advised, and individuals are urged to carry injectable steroid medication for emergency use if medical care is not available.

Individuals with Addison's disease need to recognize the consequences of not closely following their medical regimen. Any stress such as illness, fever, hot and humid weather, profuse sweating, and even emotional stress can precipitate a sudden worsening of the condition and must be met with an increase in replacement hormones. Most individuals with Addison's disease are taught to give themselves an emergency injection of hydrocortisone in times of stress.
If an underlying disease, such as tuberculosis, is responsible, treatment of the underlying disease is important for recovery or resolution of symptoms.

 

Prognosis

With careful management, an individual with Addison's disease can live a full, relatively active life. However, illness, stress, and even general anesthesia for surgery can bring on an adrenal crisis necessitating special care and adjustments in replacement hormone dosages.

Untreated, Addison's disease is a progressive condition that can gradually result in severe abdominal pain, extremely low blood pressure, and kidney failure. Addisonian crisis must be treated immediately or coma and death can occur.

 

Complications

Illness, injury, or any type of stress can result in an Addisonian crisis, a potentially life-threatening condition that is managed with an increase of the hydrocortisone dose.

Other possible complications include extremely high fever (hyperpyrexia), psychotic reactions, accidental overdose of steroid medications and, rarely, a temporary paralysis due to low levels of potassium.

Additional complications related to the individual's underlying disease might also occur and will vary depending upon the particulars of that disease.

 

Return to Work (Restrictions / Accommodations)

In most cases, work accommodations or restrictions are not necessary for individuals with Addison's disease. Taxing physical labor, such as working in hot humid environments or work that carries a great deal of stress, is unsuitable for an individual with Addison's disease. The particulars of the necessary accommodations vary significantly depending on the individual, severity of symptoms, individual's response to treatment, and job requirements.

 

Failure to Recover

If an individual fails to recover within the expected maximum duration period, the reader may wish to consider the following questions to better understand the specifics of an individual's medical case.

 

Regarding diagnosis:

• Was diagnosis of Addison's disease confirmed through an ACTH stimulation test?
• Was the cause of the adrenocortical insufficiency, such as an autoimmune disorder, infection, tumor, or hemorrhage in the adrenal glands identified?
• Were underlying causes also addressed?

Regarding treatment:

• Is individual on oral cortisol with or without fludrocortisone?
• Does current method of treatment appear to be effective?
• Has individual continued to experience any symptoms of adrenal crisis, such as vomiting, diarrhea, fever, confusion, low blood pressure, or dehydration?
• If current treatment is not effective, is individual a candidate for surgery or radiation therapy?
• Is individual on and able to maintain a diet high in fluids, carbohydrates, and protein?
• Would individual benefit from instruction in stress management techniques?
• Does individual wear an identification/medical instruction bracelet?
• Does individual carry injectable steroid medication for use in an emergency if medical care is not available?

Regarding prognosis:

• Were underlying causes, such as autoimmune disorders, infection, tumor, or tuberculosis resolved or brought under control?
• Does individual realize that Addison's disease is a lifelong condition that requires careful management, including avoiding stress and infection?
• Is individual able to adhere to oral therapy and dietary recommendations?
• Does individual attend regular follow-up visits with physician?
• Has individual experienced any complications related to the Addison's disease?
• Does individual have an underlying condition that may impact recovery?

 

Cited References

Odeke, Slyvester, and Steven B. Nagelberg. "Addison Disease." eMedicine. Eds. Daniel Einhorn, et al. 25 Nov. 2003. Medscape. 14 Sep. 2004 http://emedicine.com/med/topic42.htm.

 

From http://www.mdguidelines.com/addisons-disease

Utility of Salivary Cortisol Measurements in Cushing's Syndrome and Adrenal Insufficiency

Hershel Raff PhD*

 

Endocrine Research Laboratory, Aurora St. Luke's Medical Center, Milwaukee, WI 53215; Division of Endocrinology, Metabolism and Clinical Nutrition, Department of Medicine, Medical College of Wisconsin, Milwaukee, WI 53226

 

* To whom correspondence should be addressed. E-mail: hraff@mcw.edu.

 

Context. The measurement of cortisol in saliva is a simple, reproducible, and reliable test to evaluate the normal and disordered control of the hypothalamic-pituitary-adrenal (HPA) axis. There are a variety of simple methods to obtain saliva samples without stress, making this a robust test applicable to many different experimental and clinical situations.

 

Evidence Acquisition. Ovid Medline and PubMed from 1950 to present were searched using the following strategies: [<saliva or salivary>and<cortisol or hydrocortisone>and<Cushing or Cushing's>] and [<saliva or salivary>and<cortisol or hydrocortisone>and<adrenal insufficiency or hypoadrenalism or hypopituitarism or Addison's disease>]. The bibliographies of all relevant citations were evaluated for any additional appropriate citations.

 

Evidence Synthesis. Measurement of an elevated late-night (2300 h – midnight) salivary cortisol has a >90% sensitivity and specificity for the diagnosis of endogenous Cushing's syndrome. Late-night salivary cortisol measurements are also useful to monitor patients for remission and/or recurrence after pituitary surgery for Cushing's disease. Because it is a surrogate for plasma free cortisol, the measurement of salivary cortisol may be useful during an ACTH stimulation test in patients with increased plasma binding protein concentrations due to increased estrogen, or decreased plasma binding protein concentrations during critical illness. Most reference laboratories now offer salivary cortisol testing.

 

Conclusions. It is expected that the use of the measurement of salivary cortisol will become routine in the evaluation of patients with disorders of the HPA axis.

 

From http://jcem.endojournals.org/cgi/content/abstract/jc.2009-1166v1

Specificity of screening tests for Cushing's syndrome in an overweight and obese population

Smita K. Baid MD, Domenica Rubino MD, Ninet Sinaii PhD, MPH, Sheila Ramsey PhD, Arthur Frank MD,  and Lynnette K. Nieman MD*

 

The Program in Reproductive and Adult Endocrinology, The Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, MD, USA; The George Washington University Weight Management Program, Washington, DC, USA; Washington Center for Weight Management and Research, Arlington VA, USA; Biostatistics & Clinical Epidemiology Service, Clinical Center, National Institutes of Health, Bethesda, MD, USA

 

* To whom correspondence should be addressed. E-mail: NiemanL@nih.gov.

 

Context: Recent reports suggest a higher prevalence (1–5%) of Cushing's syndrome in certain patient populations with features of the disorder (e.g. diabetes), but the prevalence in the overweight and obese population is not known.

 

Objective: To evaluate the diagnostic performance of screening tests for Cushing's syndrome in overweight and obese subjects with at least two other features of the disorder.

 

Design and Setting: Cross-sectional prospective study.

 

Subjects and Methods: 369 subjects (73% female) completed two or three tests: a 24h urine cortisol (UFC), and/or late-night salivary cortisol, and/or 1 mg dexamethasone suppression test (DST). If any result was abnormal (based on laboratory reference range or cortisol after DST ? 1.8 ug/dl [50 nmol/l]), tests were repeated and/or a dexamethasone-CRH (dex-CRH) test was performed. Subjects with abnormal DST results and a low dexamathasone level were asked to repeat the test with 2mg of dexamethasone.

 

Results: In addition to obesity, subjects had a mean of 5–6 features of Cushing's syndrome. None was found to have Cushing's syndrome. Test specificities to exclude Cushing's syndrome for subjects who completed 3 tests were: UFC 96% [95 CI: 93–98%]; DST 90% [95 CI: 87–93%]; salivary cortisol 84% by RIA [95 CI: 79–89%] and 92% by LC-MS/MS [95 CI: 88–95%]. The combined specificity (both tests normal) for all combinations of two tests was 84 to 90%, with overlapping confidence intervals.

 

Conclusion: These data do not support widespread screening of overweight and obese subjects for Cushing's syndrome; test results for such patients may be falsely abnormal.

 

Key words: Cushing's syndrome • dexamethasone • diagnosis • obesity

 

From http://jcem.endojournals.org/cgi/content/abstract/jc.2008-2766v1

RT @ePatientDave: What's wrong w this picture? The event "Putting patients first" has no patients on the panels http://ping.fm/lnuyV

Cushing's Syndrome

Medical Codes

ICD-9-CM:
255, 255.0

255 -
Disorders of Adrenal Glands

255.0 -
Disorders of Adrenal Glands, Cushings Syndrome; Adrenal Hyperplasia Due to Excess ACTH Cushings Syndrome NOS, Iatrogenic, Idiopathic, Pituitary-Dependent, Ectopic ACTH Syndrome, Iatrogenic Syndrome of Excess Cortisol, Overproduction of Cortisol

Definition

Cushing's syndrome is a condition caused by excess corticosteroids in an individual's body. These steroids can be produced by the body itself or can result from high doses of medical steroids being administered to the individual. Cushing's syndrome is characterized by a large, round face and a thick torso with comparatively thin arms and legs. Muscle weakness, depression, hallucinations, thin skin that bruises easily and heals slowly, and purple streaks on the abdomen are also common signs and symptoms of this condition.

The adrenal glands located on top of the kidneys produce cortisol. Under normal conditions, the release of cortisol is controlled by the pituitary gland and the hypothalamus in the brain. The hypothalamus sends a hormone (corticotropin-releasing hormone or CRH) to the pituitary gland. CRH causes the pituitary gland to secrete a hormone called ACTH (adrenocorticotropic hormone). ACTH is the signal for the adrenal gland to produce cortisol.

A common cause of Cushing's syndrome is the administration of glucocorticoid drugs (such as prednisone) or ACTH for various medical reasons. This is called exogenous Cushing's syndrome. Individuals with any disease requiring prolonged use of corticosteroid medications are at increased risk of developing Cushing's syndrome. Examples of some medical conditions that are often treated with glucocorticoids or ACTH and may increase one's risk of developing Cushing's syndrome include rheumatoid arthritis, lupus, asthma, or other chronic inflammatory diseases.

When a tumor (adenoma) of the pituitary gland produces excessive amounts of ACTH, there is a subsequent release of excess cortisol by the adrenal glands. This condition is called Cushing's disease (hypercortisolism), and it accounts for about 70% of the naturally occurring (endogenous) cases of Cushing's syndrome. Another 15% of the naturally occurring cases of Cushing's syndrome are caused by release of cortisol from noncancerous (benign) or cancerous (malignant) tumors of the adrenal gland (adrenal adenoma and adrenal carcinoma). The remaining 15% of cases are caused by the production of ACTH by a tumor (either benign or malignant) located elsewhere in the body (ectopic ACTH syndrome) (Adler).

 

Risk: Cushing's syndrome most commonly affects adults between the ages of 20 and 50, although it can strike at any age. Although Cushing's syndrome is not inherited, some people have an inherited predisposition to tumors of the hormone-secreting glands. This predisposition places these individuals at a higher risk for Cushing's syndrome than the general population.

Cushing's disease more commonly affects women of reproductive age, but it can occur in men and women at any age (Kirk). Women are five times more likely than men to have Cushing's syndrome caused by a pituitary or an adrenal tumor (Adler).

Ectopic ACTH syndrome is caused by lung tumors (usually carcinoid) in 50% of cases. Other ACTH-producing tumors include thymomas, pancreatic islet cell carcinomas, and medullary carcinomas of the thyroid. Ectopic ACTH syndrome affects men more often than women because lung cancer occurs more frequently among men (Adler).

 

Incidence and Prevalence: Cushing's syndrome is relatively rare, affecting about 13 of every million individuals each year (Adler).

Diagnosis

History: Frequent complaints include weight gain, fatigue, muscle weakness (especially of the upper arms and thighs), easy bruising, poor wound healing, thinning scalp hair, abnormal growth of body hair and purple streaking (striae) of the breasts, buttocks, lower abdomen and thighs. Individuals may also complain of excessive thirst and frequent urination. Psychiatric symptoms include mood swings, depression, and personality changes (steroid psychosis). Women may notice changes in the menstrual flow (oligomenorrhea or amenorrhea), and men may complain of decreased sex drive (libido) and inability to achieve or maintain an erection (erectile dysfunction). Often, individuals will report that routine bending, lifting, or rising from a chair has become difficult or painful.

 

Physical exam: High blood pressure (hypertension) is seen in over 80% of cases. There are some striking physical changes in Cushing's syndrome. The face is round and unusually red. Acne may be present. Obesity is common; 50% of individuals gain weight in the abdomen and buttocks while the arms and legs are normal. Fat pads appear over the collarbones and upper spine.

 

Tests: If it has been determined from the history and physical exam that the individual is not showing the signs of Cushing's syndrome from prescribed medications, further testing is carried out at two levels. First, it must be determined whether the individual has elevated levels of cortisol. A 24-hour urine collection is taken, and the amount of cortisol in the urine is measured. The cortisol level will be elevated in individuals with Cushing's syndrome. Another test is the overnight dexamethasone suppression test. Dexamethasone is a steroid medication that suppresses ACTH release and lowers the early morning levels of blood cortisol in normal individuals but has no effect in individuals with Cushing's syndrome. A newer means to detect Cushing's syndrome uses a combination of the CRH stimulation test with the dexamethasone suppression test. Cortisol levels exceeding 1.4 µg per L would be diagnostic for Cushing's syndrome. This method is reported to have a very high rate of diagnostic accuracy.

Once the diagnosis of Cushing's syndrome is established, a second level of testing is carried out to determine the cause of the disease: a tumor of the pituitary gland or adrenal glands or a tumor that stimulates the adrenal glands through ectopic ACTH secretion. A test called the CRH stimulation test is often performed to help distinguish individuals with Cushing's syndrome due to pituitary adenomas from those with ectopic ACTH syndrome or cortisol-secreting adrenal tumors.

In the CRH stimulation test, individuals are given an injection of CRH. Those with a pituitary adenoma usually experience a rise in blood levels of ACTH and cortisol. This response is rarely seen in people with ectopic ACTH syndrome and practically never in those with cortisol-secreting adrenal tumors.

Routine chest x-rays are done, along with CT of the chest in suspected cases of ectopic ACTH production. A CT of the adrenal glands can show an adrenal tumor, or in the case of a pituitary tumor that stimulates both glands, enlarged adrenal glands. MRI of the pituitary gland is done in cases of suspected pituitary tumors. Pituitary adenomas are only seen on 50% of MRI tests, so it is important that the biochemical testing is thorough before surgery (Kirk).

Blood tests may also show high levels of sugar (hyperglycemia), fat (hyperlipidemia), or potassium (hyperkalemia) and abnormal numbers of certain white blood cells (neutrophilia, lymphopenia).

Treatment

If the condition is caused by overmedication, it is treated by reducing the dosage of glucocorticoids or changing the medication. When the underlying cause is a benign or malignant tumor of the adrenal gland, the tumor must be surgically removed.

The treatment of choice for tumors of the pituitary gland is surgical removal. Irradiation of the pituitary gland has a lower success rate and a higher rate of complications, and notable improvement may not be noted for a year or more. Hormone replacement therapy usually follows surgery and, in some cases, must be continued for life.

Medical treatment (chemotherapy) is usually not recommended as the primary treatment for Cushing's syndrome but is an alternative if surgery is not possible and may be used with radiation treatments to hasten better results. If the cause of Cushing's syndrome is ectopic ACTH, treatment is directed at the underlying disease.

 

Prognosis

Before the introduction of effective therapy approximately 50% of patients with untreated Cushing's syndrome died within 5 years. Now with appropriate medical intervention, the outcome of endogenous Cushing's is generally good. Cushing's secondary to ACTH-producing tumors of the adrenal gland are often treated by surgical removal of the adrenal gland, which has a 100% cure rate. However, Cushing's secondary to ACTH-producing tumors of the lung generally has a poor outcome (Stewart 522).

 

Complications

Cushing's syndrome is complicated by high blood pressure, diabetes, increased susceptibility to infections, emotional disturbances, and metastasis of cancerous tumors. The bones become fragile (osteoporosis), and compression fractures of the spine are common.

 

Return to Work (Restrictions / Accommodations)

No restrictions or accommodations should be necessary once the individual returns to work.

 

Failure to Recover

If an individual fails to recover within the expected maximum duration period, the reader may wish to consider the following questions to better understand the specifics of an individual's medical case.

 

Regarding diagnosis:

• On exam, are symptoms present such as hypertension, red, round face, acne, and weight gain in the abdomen and buttocks or fat pads over the collarbones and upper spine? Does individual have a thick torso with comparatively thin arms and legs?
• Does individual also have muscle weakness, thin skin that bruises easily and heals slowly, and purple streaks on the abdomen, breasts, buttocks and thighs?
• Does individual have a pituitary tumor, adrenal tumor, small cell lung cancer, thymomas, pancreatic islet cell carcinomas, or medullary carcinomas of the thyroid?
• Is individual being treated with glucocorticoid drugs for another condition?
• Does individual have a family history of tumors of the hormone-secreting glands?
• Does individual complain of weight gain, fatigue, thinning scalp hair, excessive body hair, excessive thirst, and frequent urination?
• Does individual have mood swings, depression, hallucinations, and personality changes?
• Does individual have oligomenorrhea or amenorrhea? Decreased libido? Impotence? Does individual report that routine bending, lifting, or rising from a chair is difficult or painful?
• Were cortisol levels tested? Was individual tested for the presence of cortisol-secreting tumors?
• Was an overnight dexamethasone suppression test done? Was a combination CRH stimulation and dexamethasone suppression test done to confirm the diagnosis? CT or MRI? Comprehensive blood testing? Was inferior petrosal sinus sampling done?
• Were conditions with similar symptoms ruled out?

 

Regarding treatment:

• Is the condition caused by overmedication? Is the dosage of glucocorticoids reduced or the medication changed?
• Is the condition caused by a tumor? Was it surgically removed? Is individual on hormone replacement therapy?

 

Regarding prognosis:

• Does individual have any conditions that may affect ability to recover?
• Have any complications developed, such as high blood pressure, diabetes, infections, emotional disturbances, metastasis of tumors, osteoporosis, and compression fractures of the spine?

 

Cited References

Adler, Gail. "Cushing Syndrome." eMedicine. Eds. William Chiang, et al. 17 Aug. 2004. Medscape. 28 Sep. 2004 http://emedicine.com/emerg/topic117.htm.

 

Kirk, Lawrence F., et al. "Cushing's Disease: Clinical Manifestations and Diagnostic Evaluation." American Academy of Family Physicians. 28 Sep. 2004 http://www.aafp.org/afp/20000901/1119.html.

 

Stewart, Paul M. "Therapeutic Corticosteroids." Williams Textbook of Endocrinology. Eds. R. H. Williams and Reed P. Larsen. 10^th ed. Philadelphia: Elsevier, Inc., 2003. 508-525. MD Consult. Elsevier, Inc. 28 Sep. 2004 http://home.mdconsult.com.

 

From http://www.mdguidelines.com/cushings-syndrome

Grass-roots voices speak up on health care

Folks write letters, address Congress

Friday,  July 10, 2009 11:10 PM

By Suzanne Hoholik

THE COLUMBUS DISPATCH

David Cress paid $400 to $600 a month in health premiums over two years and then learned his insurance plan would not cover his medical bills.

In 2007, doctors diagnosed Cushing's disease, a pituitary gland tumor that causes high cholesterol, high blood pressure and diabetes. In 2008, with $130,000 of mostly medical debt, he filed for bankruptcy.

Cress, 45, a self-employed contractor, dropped the health policy last year when the monthly premiums reached $700. He can't buy health insurance now because of pre-existing conditions. He pays cash for prescriptions and doctor visits but puts off things, including MRIs, that his doctor has ordered.

The Gahanna resident told his story to a national health-advocacy group and recently went to Washington, D.C., to repeat it to lawmakers.

With health-care reform a top priority of the Obama administration, insurance companies, drug- and device-makers, hospitals, medical groups and others are vying for a say in the policymaking. But so are individuals such as Cress, who are working at a grass-roots level.

He was invited by ABC News to be in the audience a couple of weeks ago at a health-care forum at the White House that was hosted by President Barack Obama.

Cress is collecting health-care stories from other people and sending them to members of Congress.

"There's a bunch of us out here needing health care," he said.

As a hospital social worker, Ginnie Vogts said she sees a lot of the people whose insurance companies deny medical services. She's part of a national group called Results, which is pushing for a national health program that includes expanding Medicaid. The central Ohio chapter has 15 members who meet monthly at her Clintonville home.

They write letters to newspapers and post to blogs and social-networking Web sites. They also discuss the best way to lobby lawmakers.

"You make a very small strategic move that makes an impact," said Vogts, 61.

In the decades Dr. Jeff Gordon has been in practice, he has watched families keep elderly loved ones alive at all costs.

Researchers at the Dartmouth Atlas Project, a program at Dartmouth Medical School, estimate that 27 percent of Medicare's annual $327 billion budget goes to care for patients in their final year of life.

This cost will only grow as baby boomers age. Gordon, an internal-medicine doctor at Grant Medical Center, has published a book on the topic. He said people should talk to their families about how much medical care they want at the end of their lives.

"Families will do everything because they're not sure," said Gordon, 50, who is also a nondenominational pastor.

Barbara Nash has been involved in the reform discussion since 1982, when she and another nurse opened a private practice that focused on health care instead of what they call "sickness care." The practice provided information on such things as fertility and cholesterol tests.

"We were setting up a model of practice where everybody needs a family nurse," said Nash, 66, president of the Ohio Nurses Association.

Now, as an advanced-practice nurse, she provides primary health care for her patients at a lower cost. She writes prescriptions, orders tests and manages chronic conditions.

Nash is pleased health reform has the attention of government leaders.

"But there are so many people that have a horse in this race, I keep my fingers crossed that it will come out for the best of the nation," she said.

 

From http://dispatch.com/live/content/local_news/stories/2009/07/10/grassroots.html?sid=101

NIH Clinical Trials of interest to Cushing's patients updated http://ping.fm/Gmjzd

VIDEO - HERSTORY: Joanne Shares When She Learned She Had A Metabolic Problem

VIDEO - HERSTORY: Joanne Shares When She Learned She Had A ...
By Joanne Sgro

The endocrinologist diagnosed me in my junior year in college with a pituitary disorder, but I think my parents were a little upset to tell me that there was an actual tumor on my pituitary gland because the word tumor has so many ...

I first realized I had a metabolic problem when I stopped getting my period and just kept on putting on a lot of weight in a short period of time. So, that prompted me to go see an endocrinologist. The endocrinologist diagnosed me in my junior year in college with a pituitary disorder, but I think my parents were a little upset to tell me that there was an actual tumor on my pituitary gland because the word tumor has so many negative connotations.

So, when I was on another visit with the endocrinologist she started saying the word tumor, tumor, and I said, “Do I have a tumor?” And they are like, “Yeah,” and I am like, “What am I going to do about it?” They said, “You just keep taking the medication. It’s benign; you’ll be fine.”

But, my endocrinologist told me I would never get below 200 pounds or around 200-220 pounds and I really… that was kind of my determination to prove her wrong. Great lady, but I really wanted to prove her wrong and say, “Hey, I can do this.”

After college, I worked overnights, which does a whole lot of stuff to your metabolism and I ended up gaining even more weight. I think I graduated at 270 pounds, but then two years later or several years later when I was 25 I had gotten up to 340 pounds, even by being on that medication. So the medication, while it helps the metabolic problem or your pituitary problem, it doesn’t exactly speed up your metabolism.

Watch Video

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(Adrenal) UHCG surgeons taught rare surgical procedure

Niamh Mullen

niamh.mullen@imt.ie

A world-renowned specialist in minimally invasive surgery visited Ireland last week to perform a procedure that has never been done here before.

Prof Martin Walz of the University Hospital of Essen in Germany came to University College Hospital Galway (UCHG) to carry out a laparoscopic retroperitoneal adrenalectomy on three Irish patients.

Following the visit, it is hoped the procedure will be performed at UCGH by consultant in general and vascular surgery, Dr Denis Quill. Senior registrar in general and vascular surgery at UCHG, Dr Ilyas Sadiq, said the procedure was so rare it was not done in most countries, but Prof Walz has travelled the world demonstrating it. The laparoscopic procedure is now regarded as the gold standard for resecting most adrenal tumours. It is used to treat pheochromocytoma, Conn’s syndrome and Cushing’s syndrome.

“This is an under-diagnosed problem in the community. It could affect five per cent of people,” said Dr Sadiq.

 

From http://www.imt.ie/news/2009/07/uhcg_surgeons_taught_rare_surg.html

From an MS Blog but fits Cushies, too!

The steroid taper finished up this past Sunday, but instead of finding some new energy, I've been caught in a fog of fatigue. Without too much choice in the matter, I've drifted off to the land of comatose and nod for hours during the past three days. As I know many of you have been in the same place far more often than either of us would like, I thought you might enjoy the following poem taken from Falling Up by Shel Silverstein, a well-loved book which sits in the waiting room of my music studio.

The Nap Taker
No--I did not take a nap--
The nap--took--me
Off the bed and out the window
Far beyond the sea,
To a land where sleepy heads
Read only comic books
And lock their naps in iron safes
So that they can't get took.

And soon as I came to that land,
I also came to grief.
The people pointed at me, shouting,
"Where's the nap, you thief?"
They took me to the courthouse.
The judge put on his cap.
He said, "My child, you are on trial
For taking someone's nap.

"Yes, all you selfish children,
You think just of yourselves
And don't care if the nap you take
Belongs to someone else.
It happens that the nap you took
Without a thought or care
Belongs to Bonnie Bowlingbrook,
Who's sitting' cryin' there.

"She hasn't slept in quite some time--
Just see her eyelids flap.
She's tired and drowsy--cranky too,
'Cause guess who took her nap?"
The jury cried, "You're guilty, yes,
You're guilty as can be,
But just return the nap you took
And we might set you free."

"I did not take that nap," I cried.
"I give my solemn vow,
And if I took it by mistake
I do not have it now."
"Oh fiddle-fudge," cried out the judge,
"Your record looks quite sour.
Last night I see you stole a kiss,
Last week you took a shower,

"You beat your eggs, you've whipped your cream,
At work you punched the clock,
You've even killed an hour or two,
We've heard you darn your socks,
We know you shot a basketball,
You've stolen second base,
And we can see you're guilty
From the sleep that's on your face.

"Go lie down on your blanket now
And cry your guilty tears.
I sentence you to one long nap
For ninety million years.
And when the other children see
This nap that never ends,
No child will ever dare to take
Somebody's nap again."

http://brassandivory.blogspot.com/2009/07/nap-taker.html#ixzz0Ks2gGAQZ&D

Mental illness - it's not all in your head

Many people diagnosed with mental illnesses seek the help of psychiatrists and other mental health care providers. It seems the obvious treatment. What many people with depression, anxiety and phobias, do not do, is seek out consultations to find a possible medical cause for their symptoms.

There are many endocrine,neurological and cardiac diseases that present symptoms of depression, anxiety and even
intermittent bouts of rage. Proper treatment of these disorders can reduce and often times resolve the psychiatric symptoms. Some patients will benefit from both psychiatric and medical interventions. This is not to say that every person with a mental illness is misdiagnosed, but many are.

The endocrine system, is a complex group of glands. These glands make hormones which help to control activities in
your body. Along with growth, metabolism,reproduction and development, hormones control the way you respond to your
surroundings. Diseases that alter the hypothalamic -pituitary-axis may produce anxiety-like states. It important to differentiate between medically induced and primary anxiety disorders. Treatment with psychotropic medications alone may not significantly improve the emotional symptoms and may, in some cases, contribute to the hormonal imbalances.

Anxiety frequently occurs in endocrine patients with adrenal dysfunction, Cushing's Disease, Carcinoid syndrome, hyperparathyroidism, pseudohyperparathyroidism, hyperglycemia, hyperinsulinemia, pancreatic tumors, pheochromocytoma and thyroid diseases including hyperthyroidism, hypothyroidism and thyroiditis. These diseases can be the organic basis for an anxiety disorder and with proper diagnosis and treatment can improve the quality of life of many anxiety sufferers. 

Polycystic Ovarian Syndrome is another very common endocrine disorder which, in a large percentage of patients, causes anxiety and depressive states. PCOS is caused by irregular levels of estrogen, progesterone and testosterone. It is estimated that 1 in 10 women have PCOS. Women with PCOS may suffer from acne, excessive hair growth, loss of hair, infertility, loss of menses, diabetes and weight gain. Some data reports that almost 80% of these woman suffer from anxiety, depression and other mood disorders. Treatment with birth control pills as well as medications to regulate insulin along with proper diet and exercise can significantly improve the physical and emotional symptoms of this syndrome. 

Along the way you may have what is referred to as an incidental finding. These unanticipated findings in the course of testing or medical care can hold they key to some anxious states. An incidentaloma is a tumor (-oma) found by coincidence (incidental) without clinical symptoms or suspicion. In our case it was a pituitary tumor, a microadenoma. Cushings Syndrome -an endocrine disease known to cause anxiety and phobic states -is suspected. 

Although I have primarily focused on the endocrine - anxiety connection, the list of diseases, disorders, syndromes, and medications that can contribute to or cause anxiety and depression is significant. 

Treating depressive and anxiety disorders, in some cases, needs to be a joint effort with a team of psychiatric as well as specializing physicians working in harmony. 

It has been my experience as a parent of a child with a severe anxiety disorder,that what you see is not always what you get. Proper diagnosis is the key. Finding the origin of a mental illness is often like finding a needle in a haystack. 

It took seven years and four endocrinologists before the proper treatment was initiated, a lot of time lost.

 

References: http://www.drrichardhall.com/anxiety.htm

 

From http://sunrise959.blogspot.com/

Current Cushing's Newsletter, July 8, 2009

Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Upcoming Cushing's Book

Cushing's on Facebook and Twitter

General Tips: Have an appointment with the doctor? Tips show what to ask

Want to Volunteer?

Help Keep The Cushing's Sites Going

Cushing's Disease: 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

Froedtert, medical college open specialty clinic

Pituitary Gland Tumor: Symptoms of Pituitary Adenoma

Guess some endos aren't happy, either! Biopsy of adrenal masses

A bit of humor: You know you're chronically ill when you...

Endo News: Accidental death verdict on 40-year-old mum

Endo News: Crunching the (Sometimes Surprising) Numbers on Hormone-Related Disease

Endo News: Bleaching is alive and well in sunny Jamaica

Endo News: Chemicals and Endocrine Problems

Robin Smith (staticnrg) submitted 'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'
Robin (staticnrg) submitted an abstract to Medicine 2.0.  Medicine 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'
An online community is usually defined by one or two things. These come from blogs, websites, forums, newsletters, and more. The emphasis is typically either totally support or education. But sometimes all of these meet. The Cushing’s community, bonded by the lack of education in the medical community and the necessity or self-education has become a community of all of these things.
Mary O’Connor, the founder and owner of the Cushings’ Help website and message boards started with one goal in mind. She wanted to educate others about the awful disease that took doctors years to diagnose and treat in her life. Armed only with information garned from her public library and a magazine article, she self-diagnosed in the days prior to the availability of the internet.
Mary’s hard work and dream have paid off. Others, with the same illness, the same frustrations, and the same non-diagnosis/treatment have been led by MaryO (as she’s lovingly called) to work with her to support, educate, and share.
The Cushing’s Help website soon led to a simple message board which then led to a larger one, and a larger. The site has numerous helpful webpages chock full of information. The members of this community have made a decision to increase awareness of the disease, the research that is ongoing with the disease, the doctors who understand it, and the lack of information about it in the medical field.
From this hub have come multiple Web 2.0 spokes. Many members have blogs, there is a non-profit corporation to continue the programs, a BlogTalkRadio show with shows almost every week, thousands of listeners to podcasts produced from the shows, twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups and much, much more. The power of Web 2.0 is exponential, and it is making a huge difference in the lives of patients all over the world. It is Empowerment 2.0.
One patient said it well when she said, “Until this all began I was a hairstylist/soccer mom with a high school education. It’s been a learning curve. I am done with doctors who speak to me as if they know all; I know better now.” And she knows better because she’s part of our community. All patients need this type of community.
On the Message Boards

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

New and Updated Helpful Doctors
• Stephanie Shaw, M.D. (Round Rock, TX)
• Todd Darmondy, M.D. (Fort Lauderdale, FL)
• Adam Maass, M.D. (Rogers, AR)
• Andrew D. Scrogin, MD, (Macomb, MI)
Daniel Kelly, MD (Santa Monica, CA)

---

• Leamington Spa, UK
• Toronto, Canada
• Melbourne, Victoria, Australia
• Hamburg, Germany
• Lucknow, India

New and Updated Helpful Doctors

New and Updated Bios
Please note that new and updated bios submitted after July 7 have not yet been formatted for the site. They are being done in turn and will show up here in the next few days. Add or Update your bio here
Names in parens are user names on the message boards

New Bio July 6, 2009
Shon (Shon) is from El Reno, Oklahoma. Two months before her 31st birthday, she was diagnosed with diabetes. She has many Cushing's symptoms and will test for Cushing's in early August.
New Bio July 2, 2009
Shirley (Shirley) is from Tauranga, New Zealand. She has pituitary surgery in August 2008 after years of illness, weight gain, depression, etc. She is off all meds bus is still tired and sore.
Updated Bio July 2, 2009
Cynthia (cmo) is from San Francisco, CA. She updated her bio in May 2009 after an MRI showed a pituitary tumor. She was finally diagnosed with ACTH Dependent Cyclical Cushing's after all these years of problems. Her Endo is looking at MEN1 also. This bio includes pictures.
New Bio July 1, 2009
Amber (AmberP) is from Martinsburg, West Virginia. Several doctors have told her that she most likely has Cushing's but after testing say she has PCOS. She has taken meds for PCOS and doesn't feel any better so she is still testing for Cushing's. She has has many symptoms for at least 15 years.
New Bio June 29, 2009
Dina (Dina G) is from Newington, Connecticut. She was diagnosed with Cushing's in November 2008 and just had pituitary tumor removed on June 3rd 2009. She is weaning off steroids now.
New Bio June 29, 2009
Melissa (Melissa G) is from Evans, New York. She is not yet diagnosed with Cushing's but has many symptoms. She has an appointment with an endocrinologist on July 29 and she is undergoing more testing.
New Bio June 29, 2009
Angela (AngelaK) is from Howell, Michigan. She had gastric bypass surgery in December 2006. As more symptoms showed up her PCP treated them individually. A recent MRI shows a pituitary tumor and she is consultation with a neurosurgeon at the University of Michigan who only does pituitary operations (2000+).
New Bio June 28, 2009
Aly (Aly H) is from Poughquag, New York. She has been dealing with Cushing's for the past 4 years and has seen at least 10 different doctors. She recently had her Petrosal Sinus Sampling and hopes to have pituitary surgery soon.
New Bio June 27, 2009
Katie is from St Augustine, Florida. She is not yet diagnosed with Cushing's but has many symptoms. her cortisol level is elevated and she is undergoing more testing.
New Bio June 26, 2009
Beth (bounceback01) is from Lexington, Kentucky. She is not yet diagnosed but her endo is pretty sure she has Cushing's and they're discussion treatment options.
New Bio June 24, 2009
Robert (Robert) is from Portland, Oregon. He had pituitary surgery about 18 months ago and his symptoms are returning. He is not happy about starting testing again.
New Bio June 22, 2009
Leah (cushiemom4) is from Goodlettsville, Tennessee. She had adrenal surgery August 8, 2009 and is now pregnant. She was diagnosed partly due to Mystery Diagnosis.

New and Updated Bios

Upcoming Meetings of Interest to Cushing's Patients

• Pituitary Disorders: An Interactive Forum (Los Angeles, CA) July 8, 2009. More info here.

• Pituitary Patient Education Day (Seattle, WA) July 10, 2009. More info here.

• Patient Support Group Santa Monica, CA, Wednesday July 14, 2009 More info here.

• Salt Lake City Area Cushie Dinner West Jordan, UT, Tuesday July 21, 2009 More info here.

• Medicine 2.0 (Toronto, Canada) September 17-18, 2009. Robin Smith (staticnrg), Mary O'Connor (MaryO) and Dr Ted Friedman were accepted as panelists but will not attend. The topic was "Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0".

More info here.

• Cushie Get Together 2009 Columbus, OH, Saturday, September 26, 2009 More info here.

• Patient Support Group Santa Monica, CA, Wednesday November 10, 2009 More info here.

• Magic Foundation Conference, including Cushing's and Growth Hormone Issues, June 11-13, 2010 in Chicago, IL. More info here.

• Endo 2010 (San Diego, CA) June 19-22, 2010. More info here.

• ENDO 2011 (Boston, MA) June 4 - 7, 2011. More info here.

• Cushie Convention 2011 (Winnipeg, MB, Canada, or St. Louis, MO, USA) November 18, 2011 to November 20, 2011. More info here.

• ENDO 2012 (Houston, TX) June 23 - 26, 2012. More info as it becomes available.

• ENDO 2013 (San Francisco, CA) June 15 - 18, 2013. More info as it becomes available.

• ENDO 2014 (Chicago, IL) June 21 - 24, 2014. More info as it becomes available.

• ENDO 2015 (San Diego, CA) June 20 - 23, 2015. More info as it becomes available.

• ENDO 2016 (Boston, MA) June 4 - 7, 2016. More info as it becomes available.

•Discussions about other upcoming meetings on the message boards: Meetings, events and information.

Guess some endos aren't happy, either! Biopsy of adrenal masses

Posted by Thomas Repas, DO, FACP, FACE, CDE  July 6, 2009 11:52 AM

 

We received an urgent consult request this week to see a young woman with an adrenal mass.

She had rapid onset of weight gain, increased hunger, purple striae, increased abdominal girth and mood changes for the last three months. Her primary care provider was concerned but did not know what the explanation was. He ordered extensive testing without finding any obvious abnormality. Echocardiogram, thyroid and other laboratory studies were negative.

She had urinary retention and was sent to urology. Renal ultrasound was negative. The patient requested to have a CT which identified a heterogeneous 9.0-cm left adrenal mass. The patient subsequently underwent an adrenal biopsy. She tolerated the procedure well and without hemodynamic instability. However, the results were non-diagnostic. She was then sent to see me.

Expert guidelines advise against adrenal biopsy in the routine evaluation of adrenal masses. There are several reasons.

First, adrenal biopsy has not been shown to reliably distinguish between benign or malignant adrenocortical masses. If an adrenal mass is large and/or functional, then it should be resected. Adrenal biopsy does not change one’s management in either of those circumstances.

Second, there have been reports of adrenal carcinoma seeding along the biopsy needle track.

Finally, if a pheochromocytoma were inadvertently biopsied, the consequences could be catastrophic, even fatal.

The only situation where adrenal biopsy is useful is a patient with known or highly suspected other primary malignancy which may have metastasized to the adrenal.

Despite guidelines to the contrary, I continue to see adrenal masses biopsied prior to coming to see me. Often, as was the case with this woman, the adrenal biopsy occurs before biochemical evaluation has been completed. I have seen two cases with serious complications when the adrenal mass turned out to be pheochromocytoma. If I had been asked prior to the biopsy, I would have advised them not to do it and proceed with biochemical evaluation instead.

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?

For more information:

• Mazzaglia PJ. Arch Surg. 2009;144(5):465-470.
• Mansmann G. Endocr Rev. 2004;25:309-340.
• NIH Statement on management of the clinically inapparent adrenal mass. 2002 Feb 4-6;19(2):1-23. http://consensus.nih.gov/2002/2002AdrenalIncidentalomasos021PDF.pdf

From http://www.endocrinetoday.com/comments.aspx?rid=41362

The Post-surgical Therapeutic Value of Pajamas

MaryO'Note:  I like this!  I'm in my jammies now and I haven't had any surgeries for a few years (knock on wood!)  I rarely get dressed unless I have to go out to do errands or I'm expecting someone or a delivery.  Call me a sloth or whatever but I like to be comfortable and PJs are the way to go! 

When/if I ever need a kidney donation, I hope there are people like Pamela around...

 

Today is D-Day +14. I donated my kidney to a co-worker two weeks ago today and I feel fantastic. I sit around all day resting, reading and visiting with friends. I take regular short walks and longer walks a couple times a day. Until today, I have been out of my pajamas exactly 3 times - to go to my follow-up appointment, a celebratory dinner with friends, and to visit my co-worker/recipient who is still in the hospital. I would have worn them to the dinner, but I didn't want to embarrass my friends.

I have often heard people talk about the beauty of leisurely days spent in their PJs. One friend says that she has one weekend day every couple of weeks when she makes herself stay in her PJs until at least noon. They use the time to read and talk, but mostly to quietly and slowly do nothing. They say that it is restorative.

I have never appreciated the true value of a comfortable pair of pajamas. I am one of those people who pops out of bed and gets dressed ready for the day. I am no good at sitting around and never in PJs. So when Sharon, the discharge nurse, told me that I would be in the hospital for a couple of days and then ordered me to rest at home for a couple of weeks, I headed to Target. I selected a couple pair of snazzy cotton drawstring pants (expecting a tender belly) and a couple sleep shirts in complementary colors. My best girlfriends brought me a couple of very hip sets from Anthropologie.

I think I did a pretty well in my selection for a PJ novice. After I was home a couple of days, I apologized to a friend who was taking me for a walk that I looked so sloppy. He said, "I think you look adorable in your tie-dyed baggy pants." Adorable? I haven't been adorable since the second grade at Lula J. Edge Elementary School in Niceville, Florida. I few days later, a genius designer (truly genius) was sitting with me and said, "Did that top and bottom come together or did you do that?" I looked at my orange and yellow plaid bottoms and my turquoise top, stuck out my chin and said, "I put them together myself." "Hmmm...I wouldn't have thought of that combination, but somehow it works."

So here it is 14 days after surgery and I am still in my pajamas. Day in and day out, I wear my PJs. I have stopped thinking about regular clothes. My best doctor friend, Kristy, dared me to go to the local ice cream shop in my PJs. Don't ever dare me. I had the peanut butter cup delight. I have friends who come everyday to take long walks with me - I call them my dog-walkers - we walk all over the Canton waterfront in my pajamas. It is shocking. A few days ago I got up and decided it was time to get back to real clothes. I was greeted by my niece Katherine who is living with me. She is a fourth year medical student at the University of Miami spending a year here getting a Masters of Public Health from Hopkins. She asked me why I was putting on clothes and I said I felt like I was committing one of the seven deadly sins - sloth. She said, "Aunt Pam, don't you know that pajamas have a post-surgical therapeutic value. Clothes restrict your belly and will put pressure on your incisions. I recommend you put back on your pajamas." Eureka! Bingo! Jackpot! Permission from an almost doctor to stay in my PJs!

After 14 days, I now understand the allure of staying in your PJs all day. PJs send a message to your brain that you are in relax mode. No need to run errands or clean the closet or vacuum the floor. Just sit down and read or talk or write a letter. It is restorative. I am going to suggest that the transplant center modify their discharge instructions. If they want donors to really rest and recuperate, the instructions could state: WEAR YOUR MOST COMFORTABLE PAJAMAS ALL DAY UNTIL YOU ARE READY TO RESUME NORMAL ACTIVITIES.

I am going to start weaning myself off my PJs starting tomorrow.

 

 

From http://pameladonates.blogspot.com/2009/07/post-surgical-therapeutic-value-of.html