Monday, June 29, 2009

6 new Cushing's bios added. dx include 1 adrenal, 3 pituitary, 2 undiagnosed

Monday, June 29, 2009

Cushing's locations page updated, 6 new people added.

Monday, June 29, 2009

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

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


by John Beale

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


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


Before visiting a health-care provider, the tip sheet advises older people to, among other things, make a list of any symptoms or health problems they have, as well as past health problems, any treatments they've undergone and any adverse reactions to treatments they have had.


Bring medications

It also encourages older adults to put the medications, supplements and other remedies they're taking in a bag and bring it to their appointment. That way, their practitioner can see what they're taking and at what doses - important information, since medications may interact and some may affect medical test results.


The tip sheet also advises older adults who don't speak English as a first language to consider looking for a practitioner who speaks their native tongue, bring along a bilingual buddy to translate or call the office and request a translator ahead of time.


The tip sheet encourages older patients and their caregivers to answer all questions frankly, to request explanations when needed and to ask follow-up questions, such as "Are there any risks associated with this treatment?" and "Are there any alternative treatments?"


Understanding is vital

It also suggests patients and caregivers repeat back what their providers tell them about their health and treatments to ensure they've understood correctly.


After an appointment, the tip sheet advises older patients to contact their practitioner's office if they don't feel better, if they have an adverse reaction to a medication or other treatment or if they realize they've forgotten to mention something important that's relevant to their health.


Other easy-to-read health tip sheets for older adults and their caregivers cover such topics as cold and immunizations, falls prevention, emergency planning, and joint replacement surgery for older people.


Anyone who does not have online capability may call the Office for the Aging at 845-486-2555 for tip sheet copies.




How to Talk to Your Healthcare Practitioner: Tips on Improving Patient-Practitioner Communication

The list mentioned in the article from


Good communication between you and your healthcare practitioners -- the physicians, nurse practitioners, nurses, physician assistants and other healthcare professionals you see -- is essential to good care.


It's important that you give your practitioner the information about yourself and your health that he or she needs to provide quality care. And it's important that he or she explain what you need to do to stay as healthy as possible, in a way that you understand.


Here's what experts with the American Geriatrics Society's Foundation for Health in Aging (FHA), suggest:


Before your appointment

Make a list Visiting a healthcare professional can be stressful -- particularly if you're not feeling well -- and stress can make it harder to remember what you need to tell and ask your practitioner. So make a list and bring it to your appointment. Write down any health problems you have had or do have, and any surgery or other treatments you've undergone. Write down the names of any medications you've taken that have caused unpleasant or dangerous side effects. If you're sick, write down all of your symptoms.


And don't forget to write down any questions about your health that you might have. You can find comprehensive lists of questions that older adults should consider asking their healthcare practitioners - organized by subject - on "Aging in the Know" (, the FHA's free senior health website.


Bring your medications, vitamins, and other remedies to your appointment Before leaving for your visit, put all of the prescription drugs, over-the-counter medications, herbs, vitamins, and other supplements you take in a bag. Take them with you and show them to your healthcare practitioner. This way, he or she will know exactly what you're taking, when, and at what doses. This is important because some drugs, herbs and supplements can interact with medications your practitioner might prescribe. They might also affect the results of certain medical tests.


Pack paper Bring paper or a notebook to your appointment so you can write down what your healthcare professional tells you. If you have trouble remembering later on, you can look at your notes.


Consider asking a buddy along A family member or close friend who goes with you when you see your healthcare professional can offer your practitioner information that you might forget or overlook. He or she can also help you remember what your healthcare practitioner says. If you want to discuss something with your practitioner alone, you can always ask your relative or friend to leave the room while you do so.


Call ahead to request a translator if necessary If English is not your first language, you might seek out a healthcare practitioner who speaks your native language. Other options include bringing a bilingual buddy with you to your appointment, or calling your practitioner's office ahead of time and asking if staff can supply a translator.


During your appointment

Answer questions honestly It's essential that you answer all of the questions your healthcare practitioner asks you, even if he or she asks about topics that might make you uncomfortable, such as mental health problems, drinking, and sex. There's nothing to be embarrassed about. Your practitioner needs complete information to provide proper care. And everything you tell him or her is confidential.


Ask questions If you don't understand what your healthcare professional tells you during your visit, ask him or her to explain it. You need to -- and have a right to -- understand what your practitioner says. It's particularly important that you understand any treatments he or she recommends. You should ask if there are any risks associated with treatments, and if there are any alternatives.


Mention any cultural or religious traditions that might affect your care If your healthcare practitioner recommends that you eat foods that your religion prohibits, for example, or if you need to fast at certain time of the year, tell him or her.


Repeat back After your healthcare professional explains what you should do to stay healthy, or to treat a health problem, repeat this back to him or her using your own words. You might start by saying, "So, you're telling me that I should…." If you've misunderstood his or her advice, your practitioner will realize this, and clarify.


Ask for written instructions If your healthcare practitioner puts his or her advice in writing, you can refer to the written instructions at any time.


After your appointment

Call your practitioner's office if you don't feel better, have a bad reaction to medications, or realize you forgot to mention something If you don't feel better after your visit, or seem to be having a bad reaction to medication your healthcare professional prescribed, call his or her office immediately. You should also call if you realize, after leaving the office, that you neglected to ask a question or provide information about your health, or didn't understand what your healthcare practitioner said. Ask to speak with your practitioner as soon as he or she is available or ask to speak to another healthcare professional in the office who can help you.


Communication between you and your healthcare practitioner is an ongoing process. The simple tips above can help improve communication. Improved communication means better understanding, diagnosis and treatment.

Friday, June 26, 2009

Addison's Alerts, June 26, 2009

Patsy Moore: The private confessions of a Renaissance Woman
Cross Rhythms - Stoke-on-Trent,England,UK
But I also live with lupus and I have another auto-immune disorder that's known as Addison's disease which is in a fairly progressed state so those are the ...


George Christy 06-26-2009 George Christy
The Beverly Hills Courier - Beverly Hills,CA,USA
On page 83, Mercurio writes that, “An endocrinologist, Dr. K., soon becomes disconcerted by the full inventory of the presidential maladies:  Addison’s disease, thyroid deficiency, gastric reflux, gastritis, peptic ulcer, ulcerative colitis, prostatitis, urethritis, chronic urinary tract infections, skin infections, fevers of unknown origin, lumbar vertebral collapse, osteoporosis of the lumbar spine, osteoarthritis of the neck, osteoarthritis of the shoulder, high cholesterol, allergic rhinitis, allergic sinusitis and asthma.”    

Mercurio explains the severity of Addison’s disease, and the debilitating effects of “the subject’s problem list” of his health concerns, and the 24-hour regimen of medications and injections...


This has to be Addison's disease, right? Dehydrated & response to ...
By CVidrine
I started feeling poorly a couple years ago, but as a child I always had less energy than I thought I should - with an extremely hard time in mornings.

Wednesday, June 24, 2009

New Cushing's Newsletter 6/24/09

Monday, June 22, 2009

Finally caught up! 1 updated and 5 new Cushing's bios added. dx include 2 adrenal, 3 pituitary, 1 undiagnosed

Monday, June 22, 2009

Cushing's locations updated, 5 new people added.

Monday, June 22, 2009

5 new Cushing's bios added. dx include 2 adrenal, 1 pituitary and 2 undiagnosed

Sunday, June 21, 2009

New Cushing's Helpful Doctor added in Texas

Sunday, June 21, 2009

1 new and 2 updated Cushing's bios added. 1 pituitary, 2 undiagnosed

Friday, June 19, 2009

Addison's Blog Alerts, June 19, 2009

Lost in lilac lving with Addison's: Firey Background
By Lost in Lilac
Lost in lilac lving with Addison's. I see myself walking a path of lilacs, roses,lavender with the potpourri of perfumes filling my senses with dreams and visions. "Feel teal & dance again" Raising awareness/research for ovarian ...
Lost in lilac lving with Addison's -


Training because I can! Addison's disease, exercise and living in ...
By Dusty
Just because you have Addison's Disease or another chronic illness, don't settle for half a life when so much more is possible! You can have good health, you can do the things you want to do no matter what they are! ...
Training because I can! Addison's... -

Friday, June 19, 2009

Lynn's archived interview is now on iTunes at cushings and at

Friday, June 19, 2009

Interview includes discussion about pituitary, adrenal, thyroid, adrenal crisis, Dr. Friedman and more.

Tuesday, June 16, 2009

Successful phase II/III trial of new therapy for Addison´s disease

Helsingborg Sweden/ Washington DC June 12th 2009- DuoCort gained promising data from its Phase II/III study for the rare and life threatening disease adrenal insufficiency. DuoCort's new form of physiological treatment with once-a-day hydrocortisone dosing show improved cardiovascular and metabolic measures compared to standard hydrocortisone tablets given thrice daily. The company presents the data at the 91st annual ENDO congress in Washington DC.

DuoCort's new drug has been developed to have a physiological release profile that mimics the body´s natural secretion pattern of cortisol to improve outcomes for patients. Results from the phase II/III study in 64 patients show a physiological diurnal serum cortisol profile that resulted in significantly improved cardiovascular and metabolic profiles, with reduced body weight and blood pressure. Glucose metabolism improved, in particular in patients with diabetes mellitus. The new DuoCort therapy was safe, well accepted and well tolerated.


Endocrinology Professor and Chief Medical Officer at DuoCort, Gudmundur Johannsson says, "This new more physiological chronotherapy has excellent potential to significantly improve cortisol replacement in all types of adrenal insufficiency. The positive cardiovascular and metabolic effects and once daily therapy will make this a welcome new treatment option to help patients lead a more normal life."


Adrenal insufficiency in its untreated state is a highly deadly condition. Current therapy is long outmoded, with no major drug improvements since at least the 1960s.


Increasing interest in adrenal insufficiency during the past 10 years has resulted in studies showing premature death, compromised quality of life, increased cardiovascular risk and reduced bone mineral density among patients with adrenal insufficiency. The likely cause is the highly un-physiological glucocorticoid replacement delivered by even the best therapy available today. The large unmet medical need is to improve therapy by mimicking the sizable diurnal variation in serum cortisol that normally occurs. DuoCort seeks to do so by providing a so-called chronotherapy with a once-a-day dosing to further enhance the physiological profile.


About Adrenal insufficiency

Patients suffering from adrenal insufficiency (cortisol deficiency) are unable to produce their own cortisol and need replacement therapy to survive. Adrenal insufficiency is a rare disease that affects patients in their active years and, because it is a chronic condition, they require this life-saving therapy throughout their lives. Treatment of adrenal insufficiency involves replacing, or substituting, the hormones that the adrenal glands are not making. Cortisol is replaced using hydrocortisone, the synthetic form of cortisol, and sometimes with other corticosteroids.


There are different types of adrenal insufficiency: primary adrenal insufficiency also called Addison´s disease, secondary adrenal insufficiency and CAH- congenital adrenal hyperplasia.


About chronotherapy


Coordinating biological rhythms (chronobiology) with medical treatment is called chronotherapy. It takes into account the body's biological rhythms in determining the timing--and sometimes the amount--of medication to optimize a drug's desired effects and minimize its undesired ones.


Chronotherapy for the most part is not about new drug substances but about using medicines in new ways, better attuned to the body's needs. Designing a drug so its release into the bloodstream has a particular release pattern or using pumps that deliver medicine at specified intervals are some of the innovations that may reap important benefits.


About DuoCort


DuoCort is a drug development company focused on improving glucocorticoid therapy in several areas of medical need. The company has its origins among researchers at the Sahlgrenska University Hospital in Gothenburg and at Uppsala University in Sweden. DuoCort is developing an improved glucocorticoid replacement therapy for patients with adrenal insufficiency, a rare disease for which DuoCort has orphan drug designations in Europe and the USA. The new product, a once daily dual-release hydrocortisone oral tablet that comes in both 5 mg and 20 mg sizes, is being developed by DuoCort Pharma AB, a wholly-owned subsidiary. For more information on DuoCort please visit


For more details on the data please also see:

Contact information

Medical spokesperson: Gudmundur Johannsson Tel +46 705280 872

Corporate spokesperson: Maria Forss Tel +46709670 007

Friday, June 12, 2009

Therapeutic management of adrenal insufficiency

Stefanie Hahner MDa, E-mail The Corresponding Author and Bruno Allolio MDCorresponding Author Contact Information, a, E-mail The Corresponding Author, Head of the Department

aEndocrinology & Diabetes Unit, Department of Medicine I, University of Wuerzburg, Josef-Schneider-Str. 2, D-97080 Wuerzburg, Germany

Available online 3 June 2009.

Replacement therapy in adrenal insufficiency comprises treatment with glucocorticoids, mineralocorticoids and adrenal androgen precursors. Initiation of hormone replacement therapy in newly diagnosed adrenal insufficiency leads to rapid and impressive improvements. However, despite the use of established replacement concepts, well-being is often not fully restored in patients with adrenal insufficiency, and life expectancy may even be reduced. This has led to a reconsideration of current replacement strategies. Several studies demonstrate that addition of dehydroepiandrosterone (DHEA) to the treatment regimen may lead to further improvement of general well-being and also sexual function. However, long-term trials with DHEA are still lacking, and DHEA alone is not able to restore subjective health status to normal. Further innovations comprise the development of delayed-release glucocorticoid preparations that better allow mimicking of circadian cortisol secretion and may have the potential to significantly improve the treatment of patients with adrenal insufficiency. However, future studies have to prove the clinical importance of physiological cortisol day profiles. To date, no relevant risk factors for susceptibility to adrenal crisis are known, and patient education is key for a successful prevention strategy. In our experience the well-educated patient often guides the physician not familiar with this disease.


Article Outline
Replacement therapy
Glucocorticoid replacement
Mineralocorticoid replacement
DHEA replacement
DHEA replacement therapy in patients with adrenal insufficiency
Special treatment conditions
Prevention and management of adrenal crisis
Relative adrenal insufficiency in intensive care patients
Adrenal insufficiency after long-term pharmacodynamic glucocorticoid treatment


Full text here

Wednesday, June 10, 2009

JFK and Addison’s Disease

By Robert E. Gilbert

Gravely ill, Kennedy was admitted to a London hospital in 1947. His doctor's verdict: "He hasn't got a year to live."

Throughout his early life, John Fitzgerald Kennedy seemed an unlikely prospect for national and international leadership. He was a "rather frail little boy" and almost died of scarlet fever at the age of three. Moreover, his mother has told us that this was "only the beginning": "almost all his life, it seemed, he had to battle against misfortunes of health." The family used to joke that if a mosquito bit Jack, the mosquito would surely die. In addition to the usual childhood illnesses, John Kennedy suffered from diphtheria, allergies, frequent colds and flu, hives, an irritable colon, a weak stomach which required a bland diet most of his life, and asthma- which caused him considerable difficulty as a teenager.

In 1930 [at the age of 13], he wrote his mother from boarding school complaining of blurriness and color blindness in his right eye – years later he would become hard of hearing in his left ear as well - and told his father that he had gotten dizzy and fainted at Mass. He underwent an appendicitis operation in 1931, had his tonsils and adenoids removed and came down with an enervating case of jaundice two years later, and in the mid-1930s developed a severe case of pneumonia.

Approximately one year later, he had to end his studies at the London School of Economics after coming down with another case of jaundice so severe that it required hospitalization. After returning to the United States and beginning studies at Princeton, where he would be close to the New York doctors who were treating him, the jaundice recurred and forced Kennedy to spend two months in Boston's Peter Bent Brigham Hospital and then move to Arizona to recuperate. In the fall of 1936, he entered Harvard University, where he was closer to his family, but illness followed him. A bad case of the flu prevented him from making the swimming team which was to compete against Yale, and in 1940, he developed a case of urethritis which recurred with some frequency throughout the remainder of his life. His bladder and prostate difficulties were so persistent, in fact, that shortly before his marriage he questioned one of his physicians about his ability to have children. During these early years, he was described as “a slight, very slight, young man.”

In addition to back problems so grave that his brother Robert said of him that “at least one half of the days that he spent on this earth were days of intense physical pain,” John F. Kennedy suffered from a debilitating, potentially life-threatening disease for at least the last 16 years of his life. Had Kennedy contracted it even a few years earlier than he did, he almost certainly would have died.

While on a visit to London in the fall of 1947, Congressman Kennedy became so seriously ill with weakness, nausea, vomiting, and low blood pressure that he was given the last rites of the Roman Catholic Church. The physician who examined him diagnosed his condition as Addison’s disease and told one of Kennedy’s friends that “he hasn’t got a year to live.” Journalist Arthur Krock, however, remembered being told by Joseph Kennedy, even before his son first ran for Congress in 1946, that Jack had Addison’s disease and was probably dying. Krock related that Joseph Kennedy “wept sitting in the chair opposite me in the office.” If Krock’s memory was accurate, it would appear that John Kennedy contracted Addison’s disease somewhat earlier than previously thought. Indeed, this might well explain Kennedy’s illness during his first campaign for the House of Representatives, when he collapsed during the final campaign event, a parade in Charlestown, sweating heavily and his skin discolored.

One of the common symptoms of Addison’s disease is a discoloration or bronzing of the skin. Although several of Kennedy’s biographers indicate that he did not have skin discoloration and/or that he insisted he did not, other observers found that he had a surprisingly deep tan, or yellowish skin, or skin of a greenish tinge. One who saw him during the 1960 campaign reported that his face was “lined and tanned to the extreme – and rough-looking, like the surface of a steak.” Theodore Sorenson, special counsel to the President, related that Kennedy once responded to a suspicious reporter’s question about his year-round tan “by exposing a part of his anatomy that had not been burned by the sun.” This, however, was no proof that his tan was natural, since Addisonian bronzing is “usually more marked on the exposed portions of the skin.”

Earlier, when a journalist had asked him about the unusual tinge of his skin, Kennedy replied with uncharacteristic candor, “The doctors say I’ve got a sort of slow motion leukemia, but they tell me I’ll probably last until I’m 45. So I seldom think about it except when I have the shots.”

When Addison’s disease was first discovered in the mid-1800s, it was regarded as fatal. Before 1930, 90 percent of persons with the disease died within five years; but in the late 1930s, researchers developed a synthetic substance, desoxycorticosterone acetate (DOCA), which greatly reduced the mortality rate. However, it remained important for those with the disease to avoid great stress, since stress increases the body’s need for steroids, which the Addisonian’s adrenal glands cannot provide.

Classic Addison’s disease has been caused by tuberculosis. Since John Kennedy never suffered from tuberculosis of any kind, he and his spokespersons maintained that he did not have Addison’s disease in the classic sense. Rather, they attributed his adrenal insufficiency to the physical strain of having to spend many hours in the water after his PT boast was sunk and to the case of malaria he contracted soon afterward.

Nevertheless, Kennedy was wholly dependent on the cortisone therapy that Addisonians rely upon for survival. Initially, he took 25 milligrams of cortisone by mouth; he then took it through injection. Also, he had implanted in his thighs DOCA tablets of 150 milligrams, which were replaced several times a year. There are even reports that the Kennedy family kept a reservoir of DOCA and cortisone in safety deposit boxes around the country so that Jack would have ready access to these medications wherever he traveled. One of his closest aides recounts that John Kennedy “used (and carried with him around the country) more pills, potions, poultices and other paraphernalia than would be found in a small dispensary.”

Addison’s disease often produces severe muscular cramping and thus may well have compounded Kennedy’s back problems. Clearly, the disease played an important role in heightening the dangers associated with his back operations in 1954. In the case of Addisonians at the time, even such a simple procedure as a tooth extraction might have been followed by death. The disease was so serious that occasionally patients who did not appear to be in any immediate danger would die suddenly. Surgery, therefore, was extraordinarily dangerous in Kennedy’s case.

An article that appeared in a 1955 issue of the AMA Archives of Surgery and examined the case of a 37-year-old male Addisonian who underwent spinal sugery at the New York Hospital for Special Surgery on October 21, 1954, is widely believed to have John Kennedy as its subject. Kennedy, after all, was a 37-year-old male Addisonian who had undergone surgery on the date and at the hospital specified. This article pointed out that the surgical procedures performed on JFK, a lumbosacral fusion and sacroiliac fusion, were considered dangerous because of his adrenocortical insufficiency due to Addison’s disease. Throughout the more than three-hour operation, the patient received hydrocortisone intravenously. In the postoperative period, this treatment was supplemented by added dosages of desoxycorticosterone, salt, and cortisone given intramuscularly. Except for a urinary tract infection which arose three days after the operation, a mild reaction to a transfusion, and a wound infection, the patient did not develop a full-scale “Addisonian crisis,” even though he suffered from “marked adrenocortical insufficiency.”

It was precisely the danger of an “Addisonian crisis” that led doctors at the Lahey Clinic in Boston to refuse to perform the operation in the first place, since they feared that Kennedy might not tolerate surgery well and die. Although their worst fears were not realized, Kennedy’s convalescence following his back surgery was protracted and painful. [White House physician Janet] Travell estimated that he suffered from a chronic infection in the soft tissues of his back for three and a half years after the back operations were performed. Addison’s disease, with its proclivity to render patients more susceptible to infection, almost certainly played a role in making Kennedy’s recovery so slow and agonizing.

By the time John Kennedy launched his presidential campaign in the late 1950s, new treatments for Addison’s disease (Meticorten and the fluorohydrocortisone derivatives or the glucocorticosteroid compounds) had been developed, the adrenal problems associated with the ailment had become entirely manageable, and a normal life span had become possible for the first time. Nevertheless, Kennedy’s physical condition was made an issue in the campaign, despite a statement by one of his physicians that he was “fully rehabilitated from the depletion of adrenal function which he had suffered as a result of his wartime injuries.”

As he battled Lyndon B. Johnson for the Democratic presidential nomination, some of Johnson’s allies made reference to Kennedy’s Addison’s disease and used it as an argument against his nomination. India Edwards, a southern Democratic party leader, told a group of reporters that “Kennedy was so sick from Addison’s disease that he looked like a spavined hunchback.” She also asserted that doctors had told her that were it not for cortisone, Kennedy would be dead. Another prominent Johnson ally, campaign manager John Connolly [not to be confused with Texas politician John Connally], charged that, if nominated and elected, Kennedy “couldn’t serve out the term” since “he was going to die.”

The Kennedy forces responded to these attacks by asserting that “John F. Kennedy does not now nor has he ever had an ailment described classically as Addison’s disease, which is a tubercular destruction of the adrenal gland. Any statement to the contrary is malicious and false.” In addition, Dr. Travell spent three or four hours with Dr. Eugene Cohen hammering out a statement on Kennedy’s health; it was dated June 11, 1960, and sent in letter form to Kennedy for release to the press. The two doctors found the statement difficult to write. In fact, Travell later admitted that they “fought over every word of it.” The statement read in part:

"We wish to point out that the fact that your adrenal glands do function has been confirmed by a leading endocrinologist outside of New York City.

With respect to the old problem of adrenal insufficiency, as late as December, 1958 when you had a general check-up with a specific test of adrenal function, the result showed that your adrenal glands do function."

After Kennedy won the presidential nomination of his party on the first ballot, there was considerable interest in the choice of his vice-presidential running mate. Highly revealing is a generally overlooked comment made by Philip Graham, late publisher of the Washington Post, in a memorandum concerning Lyndon Johnson’s selection for second place on the 1960 ticket:

"I told LBJ Jack would be phoning him and then…I returned to the vacant bedroom to call Adlai [Stevenson, the Democrats’ 1952 and 1956 presidential nominee]. In our prior talk he had argued for [Missouri Senator Stuart] Symington on pure expediency grounds and I had been a bit testy in pointing out that any VP was likely to be President." [Emphasis added]

During the general election campaign, an attempt was made to steal Kennedy’s health record; and the office of Dr. Cohen, the coauthor of the statement on his adrenal insufficiency, was actually vandalized. Also, prominent Republicans raised new questions about Kennedy’s health. Congressman Walter Judd of Minnesota, a former medical missionary and the 1960 Republican keynote speaker, stated unequivocally:

"For one thing I would like a flat answer to rumors in medical circles that Case Number Three in the American Medical Association’s Archives of Surgery, Vol. 71, relates to Senator Kennedy. If so, this represents information which Senator Kennedy is duty bound to make fully available to the consideration of every voter."

Republican questions about Kennedy’s health were diffused largely by the vigorous campaign he waged and by the image of vitality he projected. Except for the flu, acute sinusitis, and a case of laryngitis that “completely unnerved” him, he was well throughout the campaign period, and Dr. Travell saw him only once or twice. One of his closest aides expressed relief that the nominee’s “history of bed-confining fevers did not recur.” At one of his first press conferences after his election, Kennedy made an extraordinarily rare reference to the rumors of his ill health: he insisted to reporters, “I have never had Addison’s disease. I have been through a long campaign and my health is very good today.”

We know now that Kennedy’s Addison’s disclaimer was untrue, even though he may not have fully realized it at the time. Kennedy maintained that his adrenal insufficiency was a side effect of the malaria he contracted after the war. This is a possibility, since “malaria has been known to cause lesions in the adrenal cortex.” Since Kennedy did not suffer at any time from tuberculosis, he adrenal insufficiency seems likely to have resulted from atrophy of the adrenal glands. One medical specialist has reported that about half of all Addisonians he treated suffered from adrenal gland atrophy rather than from tuberculosis. Nine years after Kennedy’s death, his autopsy photographs were viewed by Dr. John Latimer who found that “no abnormal calcification could be seen…to suggest tuberculosis or hemorrhage of the adrenals. It is [my] firm belief that the President suffered from bilateral adrenal atrophy."

Dr. Travell later stated for the record that John Kennedy did indeed suffer from Addison’s disease. Asked in 1966 whether it would be fair to say “for a secret historical record” that Kennedy had had Addison’s disease, Travell responded:

"The term Addison’s disease has been extended at the present time to include all degrees of adrenal insufficiency and all causes of adrenal insufficiency. So that I would say yes to your question. At the present time, the broader meaning of this diagnosis would now cover his condition, although even 15 years ago it would not have."

As early as 1953, however, a physician associated with the Lahey Clinic had indicated that Kennedy had been suffering from and treated for Addison’s disease since the late 1940s. While that physician pointed out that Kennedy had been a patient of the Lahey Clinic since 1936 and had had “quite a variety of conditions,” he described his Addison’s disease as the most serious of Kennedy’s many ailments. Apparently, Travell did not speak for all of Kennedy’s doctors.

Kennedy insisted to aides that he did not have Addison’s disease, and he went so far as to tell one of them in 1959 that “no one who has the real Addison’s disease should run for the Presidency, but I do not have it.” When, around the same time, Dr. Travell tried to discuss his Addison’s disease with him, Kennedy retorted, “But I don’t have it, Doctor.” Travell explained to him, without evident success, that he didn’t have classic Addison’s disease, but that “doctors disagree maybe because they aren’t talking about the same thing.” In 1960, when one of his aides expressed unhappiness over the selection of Lyndon Johnson as his vice-presidential running mate, Kennedy replied, “Get one thing clear…I’m 43 years old, and I’m the healthiest candidate for President in the country, and I’m not going to die in office.”

There is no evidence that John Kennedy’s physical ailments had any negative impact on his conduct of the presidency. Indeed, Dr. George Burkley [head of the military medical unit at the White House] emphatically stated that “his back pain affected his normal conduction of the office of President in no way. He tended his office and went back and forth occasionally – at one point he was on crutches – but that did not deter him from his full duty as President.”

Burkley also asserted that adrenal insufficiency “was never a problem with the President when under my care.” Dr. Janet Travell agreed with this assessment, saying, “We had much smoother control of the problem of adrenal insufficiency while he was in the White House when he was in one place and not travelling around.” She added, “I thought…that his health would be more than adequate for him to carry the duties and responsibilities of the presidency, and indeed it was.” In the 34 months of his tenure, Kennedy missed only one day of work because of illness.

Indeed, rather than adversely affecting him politically, Kennedy’s physical ailments vitally contributed to the development of his character and to the formation of his political personality. Even more significant perhaps, John F. Kennedy’s ailment may have led to his meteoric political career – so far as his drive toward the glory of the presidency was an attempt, however subconscious, to prove his worth and demonstrate his strength by rising above all others.

Robert E. Gilbert is professor of political science at Northeastern University. This article is excerpted from his book The Mortal Presidency: Illness and Anguish in the White House. Copyright 1992 by Basic Books. Published by arrangement with Basic Books, a division of Harper Collins Publishers, Inc.



Wednesday, June 10, 2009

Adrenal Alerts, June 10, 2009

Lauren Our Brave Little Hero: Summer Days...
By Tanya
Adrenal: Cushings in the neonatal period occurs, but has not been reported past the first year. Some cases of neonatal Cushings resolve spontaneously 1. check adrenal reserve in resolved cases of neonatal Cushings ...
Lauren Our Brave Little Hero -


Cushing's Moxie: Melissa's Battle with Cushing's Disease: JFK had ...
By Cushie Melissa
President John F. Kennedy suffered from Addison's disease, or adrenal insufficiency. The John F. Kennedy Presidential Library includes a four-page summary of his condition and how he handled it as he ran several campaigns. ...
Cushing's Moxie: Melissa's Battle... -

Tuesday, June 09, 2009

Why it might be a good idea to do your own medical research...

This is from a wonderful blog at  I highlighted the last paragraph because I think it's wonderful and so true. I'm thinking I should make a counted cross-stitch of it or something!


My best friend always writes on her site - that you have to own your own body and it's so true.  You know if you're sick.  Don't let a doctor try to talk you out of it by saying that you're just over/underweight, depressed, tired... If you don't feel like YOU, take action!


I'm still reading Deep Survival, Who Lives, Who Dies and Why by Laurence Gonzales and came across the passage below.  It made me think we might be our own best researcher and advocate because doctors are supposed to be experts and we know so little.

We like to think that education and experience make us more competent, more capable.  But it seems that the opposite is sometimes true..."In the beginner's mind there are many possibilities," and Zen master Shunryu Suzuki.   "In the expert's mind there are few."

Don't hesitate to follow your instincts with regard to your health.  Research all possibilities no matter how obscure.  You deserve to feel well and you can be the driving factor in your treatment and wellness.

Tuesday, June 09, 2009

RT @JohnsHopkins: NIH is leading way toward important medical discoveries to improve people's health & save lives:

Tuesday, June 09, 2009

Addison's Blog Alert, June 9, 2009

A Mama Morphosis: Addison's Disease
By Maura
I have Addison's Disease aka Adrenal Insufficiency. I have been trying to come to terms with the impact it has had on my life. I don't think any person in my life knows what this is like for me on a daily basis. ...
A Mama Morphosis -

Tuesday, June 09, 2009

What causes a high potassium count?

Q: How does one get a very high potassium count, and how do you lower it?


Expert Bio Picture

Living Well Expert Dr. Jennifer Shu Pediatrician,
Children's Medical Group

Expert answer

Having a high potassium level -- called hyperkalemia -- can be caused by poor kidney function resulting from conditions including renal failure, lupus, glomerulonephritis (an inflammation of the structures within the kidneys) or the effects of certain medications, such as some diuretics and medicines that lower blood pressure.

A diet that is high in potassium may also be the cause, although if a person's kidneys are working properly, the extra potassium is usually removed from the body through the urine. Items rich in potassium include bananas, salt substitutes and potassium supplements.

Lack of a hormone called aldosterone can also cause high potassium in the body. A disorder called Addison's disease is one example of this situation.

In addition, significant tissue breakdown from burns or trauma may release potassium from the cells of the body into the bloodstream.

The treatment of hyperkalemia depends in part of the severity of a person's symptoms and the cause of the condition. In many instances, there are no symptoms, and lowering the level may consist of avoiding excessive potassium intake, using a potassium-binding medication and treating any associated kidney problems.

Severe hyperkalemia can cause an abnormal heart rhythm, paralysis or irregular breathing patterns and may require aggressive intravenous medications to lower the potassium in the body quickly.

Sometimes, a high potassium count is the result of falsely elevated laboratory test, most frequently due to the rupture of red blood cells (called hemolysis) in the test sample either during or immediately after taking the blood. Hemolysis may occur due to rough handling during the blood draw or of the tube of blood before it is analyzed and does not accurately reflect the level of potassium in the body. Simply repeating the blood draw will most likely show a normal result.


Friday, June 05, 2009

Adrenal Insufficiency as a Presenting Manifestation of Nonsmall Cell Lung Cancer

Adrenal Insufficiency as a Presenting Manifestation of Nonsmall Cell Lung Cancer.

Case Report

Southern Medical Journal. 102(6):665-667, June 2009.
Mohammad, Khalid MD; Sadikot, Ruxana T. MD, MRCP (UK)

The adrenals are a common site of metastases for lung cancers; adrenal insufficiency, however, as a presenting feature of lung cancer, is extremely rare. We report a case of primary adrenal insufficiency secondary to metastases from adenocarcinoma of the lung. Our patient presented with hypotension, abdominal pain, and weight loss. CT scans showed a right upper lobe mass and bilateral adrenal masses. The frequent occurrence of constitutional symptoms, metabolic derangements, and cardiovascular compromise in patients with advanced cancer may lead to an underestimation of the true incidence of adrenal insufficiency in this population.

(C) 2009 Southern Medical Association

Fulltext  |  PDF (535 K);jsessionid=KpqLxNbTVFzCf2JQTlJgC4nhFT1Zbp4jr8BdzwHnfK2GlPBQnMLl!1966694724!181195629!8091!-1

Wednesday, June 03, 2009

Effects of Dehydroepiandrosterone Replacement on Vascular Function in Primary and Secondary Adrenal Insufficiency: A Randomized Crossover Trial


Journal of Clinical Endocrinology & Metabolism , doi:10.1210/jc.2008-2636
Right arrow    Cardiovascular Endocrinology
The Journal of Clinical Endocrinology & Metabolism Vol. 94, No. 6 1966-1972
Copyright © 2009 by The Endocrine Society

Effects of Dehydroepiandrosterone Replacement on Vascular Function in Primary and Secondary Adrenal Insufficiency: A Randomized Crossover Trial
Sam P. L. Rice, Neera Agarwal, Hemanth Bolusani, Robert Newcombe, Maurice F. Scanlon, Marian Ludgate and D. Aled Rees

Centre for Endocrine and Diabetes (S.P.L.R., N.A., H.B., M.F.S., M.L., D.A.R.) and Department of Primary Care and Public Health (R.N.), School of Medicine, Cardiff University, Cardiff CF14 4XN, United Kingdom

Address all correspondence and requests for reprints to: Dr. D. Aled Rees, Centre for Endocrine and Diabetes Sciences, School of Medicine, Cardiff University, Heath Park, Cardiff CF14 4XN, United Kingdom. E-mail:

Context: Patients with Addison’s disease and hypopituitarism have increased mortality, chiefly related to vascular disease. Both diseases are characterized by dehydroepiandrosterone (DHEA) deficiency, yet this is not usually corrected. It is unclear whether treatment of these conditions with DHEA improves cardiovascular risk.

Objective: The aim of the study was to evaluate the effects of DHEA on arterial stiffness and endothelial function in subjects with Addison’s disease and hypopituitarism.

Design and Intervention: Forty subjects (20 with Addison’s disease, 20 with panhypopituitarism) were assigned to consecutive 12-wk treatment periods of DHEA 50 mg or placebo in a randomized, double-blind, crossover design separated by an 8-wk washout.

Main Outcome Measures: Primary outcome parameters were measures of arterial stiffness [augmentation index, central blood pressure, brachial and aortic pulse wave velocity (PWV)] and endothelial function. Serum androgens, anthropometry, and metabolic biochemistry (lipids, homeostasis model of assessment for insulin resistance, high sensitivity C-reactive protein, adiponectin, plasminogen activator inhibitor-1) were also assessed.

Results: Despite normalization of DHEA sulfate, androstenedione, and testosterone (females), DHEA replacement did not affect augmentation index, aortic PWV, brachial PWV, central blood pressure, or endothelial function. DHEA did not affect any anthropometric or metabolic measures, apart from a small reduction in high-density lipoprotein cholesterol (–0.08 mmol/liter; P = 0.007; 95% confidence interval for the difference, –0.13 to –0.02 mmol/liter).

Conclusions: Short-term DHEA supplementation does not significantly affect measures of arterial stiffness or endothelial function in patients with adrenal insufficiency.

Wednesday, June 03, 2009

The Cushing's Board is back online: Sheesh! What a day!

Tuesday, June 02, 2009

New Cushing's Newsletter

Tuesday, June 02, 2009

New Cushing's undiagnosed bio added.

Tuesday, June 02, 2009

Cushing's locations page updated, new people added.

Monday, June 01, 2009

Cushing's locations page updated, new people added.

Monday, June 01, 2009

2 new Cushing's bios added. 1 adrenal (now also pituitary, 1 pituitary at