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Everything posted by sharm

  1. Well as long as we are on the history of the Cushing?s awareness pins; actually, I first made the ribbon pins with Blue and Yellow for a health-fair I did for UCLA in 2000 after my own pituitary surgery. I used Blue and Yellow because those were UCLA?s colors and that is where I had my surgery, and I was in the process of starting the UCLA Pituitary Patient Support Group. I took a blue ribbon and a yellow ribbon just like the ones Mary you have here and I glued them together and glued a small safety-pin on the back. I put them in a plastic bag with a card that talked about pituitary disease and handed them out at the booth I had at the health-fair. I also gave them out at our first support group meeting on April 2001 and a few meetings after that but they were so time-consuming to hand make that I finally stopped. Later when I first met Sue, I told her about the ribbon pins I had made for pituitary tumors and she asked if I wouldn?t mind letting her use them for Cushing?s and I said, that would be great. I still think after all these years the pins are great and I still wear the ones I bought from CUSH. I really have to say I certainly remember how hard Sheryl worked on the April 8th Cushing?s awareness day, and she made it happen! And I remember how grateful I was when Mary O started this board, there was nothing on the Internet like it and we all were just sharing our personal stories and hoping to help others. Many of my absolutely dearest and closest friends to this day I met right here on this board. So I guess everyone had a little something to do with all the great things that have evolved through the years and I think we have all come a very long and rewording way. And I'm sure if we all keep going in our own unique ways, we will look back years from now and know we have made a huge difference for others. Peace and Blessings, Sharm
  2. Hello all: I received a copy of this article the other day and thought I would share it. I spoke last week for UCLA School of Medicine again. This time it was for second year medical students. It went very well, Dr. Cohan let me talk about every Cushing's topic I could think of. The students were very interested and asked a lot of questions. Many stopped afterwards to ask more questions and thanked me for speaking. Boy-what a blessing that was for me. I hope you enjoy the article. Blessings. Sharmyn Internal Medicine News The Leading Independent Newspaper for the Internist April 1 2003 ? Volume 36 ? Number 7 Clinical Rounds Nonspecific symptoms Pituitary Tumors: Not as Rare as Once Thought, Easily Overlooked Erik L. Goldman ? ? ? ? ? Contributing Writer NEW YORK ? Consider the possibility of pituitary tumors in the differential diagnosis of any patient who presents with sudden and unexplainable onset of nonspecific symptoms such as headache, fatigue, cognitive deficits, weight gain, or diabetes. Pituitary lesions are among the most commonly misdiagnosed medical conditions, in large part because they share clinical manifestations with many other conditions. Also, most physicians consider pituitary tumors to be rare disorders, and therefore seldom consider the possibility. Pituitary disease experts, speaking at a press briefing on pituitary/hormonal disorders sponsored by the American Medical Association, urged primary care physicians to be on the lookout for pituitary problems. They believe that the primary care community can play a much greater role in detecting these disorders. ?Pituitary disorders are not so rare, and there is potential for wide impact,? said Dr. Shereen Ezzat, head of the Endocrine Oncology Site Group at Princess Margaret Hospital, and director of the Freeman Centre for Endocrine Oncology, Mount Sinai Hospital, Toronto. Dr. Ezzat is one of the authors of a metaanalysis aimed at defining the prevalence of pituitary tumors. Data from seven autopsy studies and five radiographic studies originally done from 1981 to 1999 were reviewed. Each study included from several hundred to several thousand subjects. In the autopsy studies, the prevalence of pituitary lesions was 14.4%, and in the radiographic (CT and MRI) studies the rate was 22.5%. After excluding all patients who presented with symptoms directly suggestive of pituitary disorders and adjusting for differences in sample sizes between the different studies, the overall prevalence of pituitary tumors was 16.7%. Between one-quarter and one-third of the tumors were associated with excess hormone secretion; prolactinomas were the most common type. The true prevalence of pituitary adenomas may be even higher than what is seen in imaging studies, since many of these tumors?the so-called microadenomas?are too small to be detected with routine imaging. ?Forty percent of patients with Cushing's syndrome caused by tumors that secrete excessive ACTH do not have visible tumors on MRI,? Dr. Ezzat said. Likewise, one-third of infertile patients with abnormally elevated prolactin do not have MRI-visible lesions. Most pituitary adenomas are benign and not clinically significant. If they are detected at all, they are incidental findings discovered during the work-up of some other neurologic problem. But many clinically significant pituitary adenomas go undiagnosed or misdiagnosed for years, during which they wreak physical, psychological, and economic havoc in patients' lives. (See box at right. [refers to article below about Sharmyn McGraw]) Rapid weight gain, fluid retention, sexual dysfunction, loss of libido, infertility, fatigue, weakness, visual loss, headache, emotional lability, and distortion of body image can be devastating, said Dr. Edward Laws Jr., professor of neurosurgery, University of Virginia, Charlottesville, and president of the World Federation of Neurological Societies. ?A young woman who wants a family but is not menstruating, but is lactating and has no interest in sex, and suddenly finds that she's hirsute, has joint pain, and weight gain, is facing a tremendous burden,? Dr. Laws said at the briefing, also sponsored by the Pituitary Network Association. These are not rare occurrences. ?Pituitary tumors are the third most common primary brain tumors. Nineteen percent of the brain tumors treated at our brain tumor surgery training centers are pituitary tumors,? he said. Primary care clinics often are the first stop for patients with pituitary tumors. In a typical scenario, a patient has a sudden onset of weight gain, diabetes, hypertension, headache, and/or mood or sleep disorders in the absence of any family history or obvious risk factors. ?You need to step back and ask why the patient is suddenly showing these symptoms. A hormonal abnormality may be the underlying cause, and pituitary adenoma is one definite possibility,? Dr. Ezzat said. Patients are often subjected to a wide range of diagnostic procedures and therapies that prove fruitless because they do not address the underlying problem. Signs of Pituitary Adenomas ? Sudden changes in energy level, weight, mood, and ability to function can signal a pituitary tumor, especially when there are no other obvious explanations for the changes, Dr. Ezzat said. In men, pituitary tumors often cause sudden loss of libido, which may be written off as a consequence of stress or ?normal? aging. Malignancy is not the main concern for most pituitary tumor types. What's problematic is their ability to secrete various hormones, and the distorting effect they can have on normal pituitary and neuronal structures. Prolactinomas are by far the most common type of pituitary tumors, followed by ACTH-secreting lesions (Cushing's syndrome). But pituitary tumors also can secrete growth hormone, LH, TSH, or other key hormones, Dr. Laws noted. If you suspect a pituitary problem, test for abnormal levels of prolactin, ACTH, cortisol, growth hormone, LH, FSH, and TSH. If any of these are abnormal, it's worth considering MRI or other imaging to look for a lesion, but keep in mind that other disorders can cause hormone abnormalities. There are no clear guidelines for when to use diagnostic imaging. With a few exceptions, most pituitary tumors do not show hereditary patterns. ? One Patient's Pituitary Odyssey In 1993, Sharmyn McGraw was a fit and fashionable 31-year-old enjoying her active life in the ?happening? Los Angeles suburb of Newport Beach. Suddenly, she started gaining weight. A lot of weight. ?I went from a muscular size 2 to an obese size 22 in 1 year,? said Ms. McGraw, leader of the University of California, Los Angeles, Pituitary Tumor Patient Support Group. ?I gained 11 pounds in 4 days, 85 pounds in 6 months, and 100 pounds in a year. It was devastating.? The weight gain occurred despite a thrice-weekly workout routine with a personal trainer, a highly active lifestyle, and a very reasonable diet. There were many other changes. ?My back and face were covered with rashes. My abdomen looked like I was having twins. I was exhausted and felt like I'd been hit by a Mack truck 24 hours a day, 7 days a week,? she recalled at the press briefing. So began Ms. McGraw's 7-year odyssey of medical misdiagnosis. She saw 15 physicians, including gastroenterologists and endocrinologists, 6 nutritionists, and alternative medicine practitioners including naturopaths and acupuncturists. She was given a Merck Manual's worth of diagnoses, including prediabetes, fibromyalgia/chronic fatigue syndrome, sleep disorder, gastroesophageal reflux, thyroid dysfunction, various mood disorders, and compulsive overeating. This last was particularly irksome since most of the time she felt so sick to her stomach that she could hardly eat. While her personal life all but capsized, she underwent painful tests and procedures including endoscopies, colonoscopies, a bone marrow biopsy, a thyroidectomy, and ankle and knee surgery to treat her chronic joint pain. Heart palpitations landed her in the emergency room. ?I was terrified and at the end of my rope. I completely lost hope in my doctors and decided to take control of my own situation,? she said. Searching on the Internet for information about her symptoms, she noticed that increased cortisol seemed to be a common factor. An article about Cushing's syndrome provided the turning point. ?Every single symptom they described was something that I had experienced. I became convinced that I had Cushing's syndrome, and that I'd had it for 7 years.? Without a single urine or blood test, Ms. McGraw hit on an accurate diagnosis that had eluded more than a dozen physicians. At the UCLA Pituitary Tumor and Neuroendocrine Program, physicians confirmed the presence of an ACTH-secreting pituitary microadenoma. Dr. Daniel Kelly, a UCLA neurosurgeon, removed the lesion under ultrasound guidance. ?In April of 2000, Dr. Kelly gave me my life back,? Ms. McGraw said. Within weeks, Ms. McGraw's cortisol levels were back in the normal range. Her pituitary function has been normal for 2.5 years, and she has struggled to lose the weight she gained and rebuild her life. She also found a new calling as a patient advocate and public educator about pituitary disorders. Robert Knutzen, chairman of the Pituitary Network Association, a patient advocacy group, stressed that Ms. McGraw's odyssey is not unique. Although there are no hard numbers, Mr. Knutzen, who has acromegaly, said many patients with pituitary disorders experience devastating physical and psychosocial changes for years before they are properly diagnosed. Copyright ? 2003 by International Medical News Group. Click for restrictions.
  3. I have never heard any of my doctors or the doctors that speak at my pituitary tumor support group refer to Cushing's 1, or Cushing's 2. From what I have been told and have read: It starts off as Cushing's syndrome until a defiant diagnosis is made on the source of the high Cortisol. It is considered Cushing's syndrome if there is a tumor in the adrenals. Cushing's disease refers specifically to excessive ACTH-secretion by a pituitary tumor. Ectopic ACTH producing tumors are from cancer or tumors somewhere else in the body. Still considered Cushing's syndrome. In some people with severe depression, alcohol abuse, anorexia, high levels of estrogen and people having to use steroids can get "pseudo-Cushing's. The PNA puts out a great book with tuns of information from some really great doctors. I use my book all the time to answer questions for myself, it is a great tool to have. There is some great information about Cushing's disease and Cushing's syndrome. Blessings, Sharm
  4. This is great. I had the pleasure of hearing Dr. Heaney speak about this at the UCLA, USC, Ceadar's Physicians conference I attended last Sunday. His presentation was quite informative. He did talk about this being in it's infant stages, never the less, it's wonderful progress. Blessings, Sharmyn
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