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Video: Taylor Davis Spreads Awareness about Cushing's Disease
MaryO posted a topic in Video,
“I could barely walk to class anymore. I was in pain. I gained like 70 pounds, despite extreme dieting and exercising,” said Davis.
When Davis enrolled into her spring semester classes at USC, she started experiencing several symptoms.
“I noticed my grades started to take a fall and I was like ok something is seriously wrong here because I’ve never had trouble in school and I could stay up studying all night long and not remember anything the next day,” said Davis.
Davis went from doctor to doctor, but no one could figure out what was wrong with her.
“I thought I was going crazy. Every doctor would say keep trying to diet and exercise and we’ll get you on some medication for your depression and your anxiety,” said Davis.
After dropping out of USC and spending time in the emergency room, a Cushing’s Disease Facebook group led her to a research doctor in California.
“Around October is when the doctor officially diagnosed me and within a month I had my brain surgery scheduled,” said Davis.
Fast forward a couple months later, Davis is thankful to share her experiences on social media and help others going through the same disease.
“I post about it all the time and by using the hashtags for Cushing’s disease, I probably get three to four messages a day from people all over the world. I’ve had people message me in Spanish and I have to use google translate to try and help them,” said Davis.
From https://www.wbtw.com/news/a-woman-in-the-pee-dee-spreads-awareness-on-mysterious-disease/
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Why It's Safer Than Ever To Remove Pituitary Tumors
MaryO posted a topic in Pituitary Surgery,
There are three basic things you should know about your pituitary gland: it’s buried away at the base of your brain; it’s very important; and, alas, it has a habit of growing tumors.
Did your pulse quicken a tiny bit at mention of “tumors?” If so, it’s because your thyroid told it to, on instructions from your pituitary gland. But now it’s normal again, right? For that you can thank cortisol, which your pituitary gland told your adrenal glands to make in response to stress.
That’s just the tip of the iceberg, according to Yair Gozal, MD, neurosurgeon at Mayfield Brain & Spine.
“The pituitary gland is also known as the master gland,” he explains. “It regulates the release of hormones from other glands, controlling blood pressure, urine output, body temperature, growth, metabolism, lactation, ovulation, testosterone, stress response, and more.”
That of course means when something is wrong with your pituitary gland—say, a tumor—the symptoms can vary. Perhaps the tumor grows from the part of the pituitary gland that produces prolactin, which regulates sexual function. In that case, a prolactinoma will result in halted menstruation or erectile disfunction (among other things.) Alternatively, suppose the tumor grows from the part of the pituitary gland that produces growth hormone. These tumors cause gigantism in children and acromegaly in adults (again, among other things.)
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Video: Pituitary tumors: Mayo Clinic Radio
MaryO posted a topic in Video,
The pituitary gland is a hormone-producing gland at the base of the brain. Sometimes known as the "master gland," the pituitary gland produces and regulates hormones that help the body function. Pituitary tumors are abnormal growths that develop in your pituitary gland.
Some pituitary tumors result in too many of the hormones that regulate important functions of your body. Some pituitary tumors can cause your pituitary gland to produce lower levels of hormones. Most pituitary tumors are noncancerous (benign) growths that remain in your pituitary gland or surrounding tissues, and don't spread to other parts of your body. There are various options for treating pituitary tumors, including removing the tumor, controlling its growth and managing your hormone levels with medications. Your health care provider also may recommend a wait-and-see approach.
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Adrenal incidentalomas—do they need follow up?
MaryO posted a topic in News Items and Research,
Only 2.5% of the tumours grew to a clinically significant extent over a mean follow-up period of 50 months, and no one developed adrenal cancer. Of those patients with NFAT or MACE, 99.9% didn’t develop clinically significant hormone (cortisol) excess.
This was a group (especially those with MACE) with a high prevalence of hypertension, diabetes, and obesity. This could be because adrenal adenomas promote cardiometabolic problems, or vice versa, or maybe this group with multimorbidities is more likely be investigated. Adrenal incidentalomas are already found in around 1 in 20 abdominal CT scans, and this rate is likely to increase as imaging improves.
So it’s good news that this study supports existing recommendations, which say that follow-up imaging in the 90% of incidentalomas that are smaller than 4 cm diameter is unnecessary.
From https://blogs.bmj.com/bmj/2019/07/03/ann-robinsons-journal-review-3-july-2019/
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Post-traumatic Stress Symptoms Common in Cushing’s Patients Before Surgery
MaryO posted a topic in News Items and Research,
The study, “Posttraumatic stress symptoms (PTSS) in patients with Cushing’s disease before and after surgery: A prospective study,” was published in the Journal of Clinical Neuroscience.
Cushing’s disease is an endocrine disorder characterized by excess secretion of the adrenocorticotropic hormone (ACTH) by a pituitary adenoma (tumor of the pituitary gland). This leads to high levels of cortisol, a condition known as hypercortisolism.
Chronic hypercortisolism is associated with symptoms such as central obesity, buffalo hump, body bruising, muscle weakness, high blood pressure, high blood sugar, and weak bones.
Additionally, patients can develop psychiatric disorders including depression, anxiety, and cognitive dysfunction, all of which contribute considerably to a lower health-related quality of life.
Depression and anxiety rates are particularly high in Cushing’s disease patients, with 54% of them experiencing major depression and 79% having anxiety.
Due to the significant impact of psychological factors in these patients, they may be susceptible to post-traumatic stress symptoms (PTSS). But more information on this phenomenon in these patients is still needed.
To address this lack of data, a group of Chinese researchers conducted a prospective study to investigate the occurrence, correlated factors, and prognosis of PTSS in patients with Cushing’s disease.
A total of 49 patients newly diagnosed with Cushing’s disease who underwent transsphenoidal removal of the tumor as their first-line treatment were asked to participate in this study. Another group of 49 age- and sex-matched healthy individuals were included as controls.
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Temozolomide Effective Against Cushing’s Caused by Aggressive Tumors
MaryO posted a topic in News Items and Research,
The study, “Successful reduction of ACTH secretion in a case of intractable Cushing’s disease with pituitary Crooke’s cell adenoma by combined modality therapy including temozolomide,” was published in the journal J-Stage.
Cushing’s disease is often caused by a tumor in the pituitary gland that secretes high levels of adrenocorticotropic hormone (ACTH), leading to high levels of cortisol and other symptoms.
Macroadenomas are aggressive, fast-growing tumors that reach sizes larger than 10 millimeters. Crooke’s cell adenoma is a type of macroadenoma that does not respond to conventional therapies, but has deficient mechanisms of DNA repair. That is why chemotherapeutic agents that damage the DNA, such as temozolomide, might be potential treatments.
Researchers in Japan reported the case of a 56-year-old woman with Cushing’s disease caused by a Crooke’s cell adenoma in the pituitary gland who responded positively to temozolomide.
The patient was diagnosed with Cushing’s disease at age 39 when she went to the hospital complaining of continuous weight gain. She also had excessive production of urine and a loss of vision in the right eye.
The lab tests showed high levels of cortisol and ACTH, and the MRI detected a tumor of 4.5 centimeters in the pituitary gland. The doctors removed a part of the tumor surgically, which initially reduced the levels of ACTH and cortisol.
However, the hormone levels and the size of the residual tumor started to increase gradually after the surgery, despite treatment with several medications.
By the time the patient was 56 years old, she went to the hospital complaining of general fatigue, leg edema (swelling from fluid), high blood pressure, and central obesity (belly fat)....
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New Helpful Doctor
MaryO posted a topic in Texas,
How would you rate your Helpful Doctor?
4/5
Your Doctor's Name
Sasan Mirfakhraee
Your Doctor’s Address
2001 Inwood Rd
Dallas, TX 75390
Phone
(214) 6452800
sasan.mirfakhraee@utsouthwestern.edu
What are your Doctor’s Specialties?
Cushings Disease/Syndrome, type 1 and type 2 diabetes mellitus, as well as thyroid, pituitary, and bone remodeling disorders.
HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
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Surgical Removal of Pituitary Adenomas Through the Nose Remains an Effective Treatment for Pediatric Patients
MaryO posted a topic in News Items and Research,
The study, “Transsphenoidal surgery for pituitary adenomas in pediatric patients: a multicentric retrospective study,” was published in the journal Child’s Nervous System.
Pituitary adenomas are rare, benign tumors that slowly grow in the pituitary gland. The incidence of such tumors in the pediatric population is reported to be between 1% and 10% of all childhood brain tumors and between 3% and 6% of all surgically treated adenomas.
Characteristics of patients that develop these pituitary adenomas vary significantly in different studies with regards to their age, gender, size of adenoma, hormonal activity, and recurrence rates.
As the pituitary gland is responsible for hormonal balance, alterations in hormone function due to a pituitary adenoma can significantly affect the quality of life of a child. In most cases, pituitary adenomas can be removed surgically. A common removal method is with a transsphenoidal resection, the goal of which is to completely remove the growing mass and cause the least harm to the surrounding structures.
In this study, the researchers report the surgical treatment of pediatric pituitary adenomas at three institutions. They collected data from 27 children who were operated for pituitary adenoma using one of two types of transsphenoidal surgeries — endoscopic endonasal transsphenoidal surgery (EETS) and transsphenoidal microsurgery (TMS) — at the University Cerrahpasa Medical Faculty in Istanbul, Turkey, at San Matteo Hospital in Pavia, and at the University of Insubria-Varese in Varese, Italy.
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Johns Hopkins Pituitary Day
MaryO posted a calendar event in Cushie Calendar,
Attendance is free, and patients can bring one guest.
Call 410-955-3921 or reserve your spot by email at pituitaryday@jmhi.edu
More information at www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/pituitary_center/index.html
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Ohio State Pituitary Patient Symposium
MaryO posted a topic in Ohio Meetings,
Registration Cost: Individual $40 Save $20 and register for 2: $60
Please email carol@pituitary.org to register!
*This registration is for the Patient Symposium only. The Ohio State University is offering a CME Course separate from our Symposium. For information on the CME course go to ccme.osu.edu
OSU Pituitary Symposium Agenda
Saturday, July 13, 2019
Patients and Family’s Track
Gabbe Conference Room – James L045
8:00 AM
Registration and Breakfast
8:20 AM
Welcoming Remarks and Introductions: The OSU Skull Base and Pituitary Team
Lawrence Kirschner, MD, PhD
OSUCCC - James
8:30 AM
Hypopituitarism: Pitfalls and Recommendations
Maria Fleseriu, MD, FACE
Oregon Health and Science University
9:00 AM
Trans-sphenoidal Approach: What to Expect? Post-Operative Complications
Richard Carrau, MD
OSUCCC - James
9:30 AM
Acromegaly: Why it Takes That Long to Diagnose? What are the Options?
Lawrence Kirschner, MD, PhD
OSUCCC - James
10:00 AM
Round Table Q & A
10:15 AM
Mid-Morning Break
10:30 AM
Growth Hormone Deficiency: Journey to Adulthood
Robert Hoffman
Nationwide Children's Hospital
11:00 AM
Radiation Therapy? Difference Between Modalities and Possible Risks
Dukagjin M Blakaj, MD, PhD
OSUCCC - James
11:30 AM
Round Table Q & A
11:45 AM
Lunch Break and Patient's Journey
12:45 AM
Surgical Approach: What to Expect
Daniel Prevedello, MD
Douglas Hardesty, MD
OSUCCC - James
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Bilateral Adrenocortical Adenomas Causing Adrenocorticotropic Hormone-Independent Cushing's Syndrome
MaryO posted a topic in News Items and Research,
A 31-year-old woman had a typical appearance of CS. The oral glucose tolerance test showed impaired glucose tolerance and obviously increased insulin and C-peptide levels. Her baseline serum cortisol and urine free cortisol were elevated and did not show either a circadian rhythm or suppression with dexamethasone administration. The peripheral 1-deamino-8-D-arginine-vasopressin (DDVAP) stimulation test showed a delay of the peak level, which was 1.05 times as high as the baseline level. Bilateral AVS results suggested the possibility of BAAs. Abdominal computed tomography showed bilateral adrenal adenomas with atrophic adrenal glands (right: 3.1 cm × 2.0 cm × 1.9 cm; left: 2.2 cm × 1.9 cm × 2.1 cm). Magnetic resonance imaging of the pituitary gland demonstrated normal findings. A left adenomectomy by retroperitoneoscopy was performed first, followed by resection of the right-side adrenal mass 3 mo later. Biopsy results of both adenomas showed cortical tumors. Evaluations of ACTH and cortisol showed a significant decrease after left adenomectomy but could still not be suppressed, and the circadian rhythm was absent. Following bilateral adenomectomy, this patient has been administered with prednisone until now, all of her symptoms were alleviated, and she had normal blood pressure without edema in either of her lower extremities.
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Scientists Discover Biological Reason Why Women Are More Likely to Develop Adrenal Disorders
MaryO posted a topic in News Items and Research,
The adrenal gland is a hormone producing organ that sits on top of the kidneys. The outer part, or cortex, is responsible for the production of several hormones, including the stress-related hormone cortisol and the blood pressure controlling aldosterone. Adrenal cancer is relatively rare but occurs approximately three times more in women than in men. The cellular basis for this difference has not been investigated in detail but uncovering it might lead to sex-specific treatments and has huge implications for many areas of research.
Dr Andreas Schedl, from INSERM, France, who led the study said:
The scientists studied the adrenal cortex of male and female adult mice and found that female mice replace their entire set of hormone-producing cells within 3 months, while it takes male mice an entire 9 months. Using different techniques to label cells within the adrenal cortex, they established that females not only have a higher proliferation rate of cells, but also recruit stem cells from a different part of the adrenal gland.
The research has wide reaching implications, as it demonstrates the basic mechanism underlying the increased turnover of cells within the adrenal gland, providing a possible explanation for the increased incidence of adrenal disorders in women.
Dr Schedl explained: "It is early days and many more experiments will need to be performed before our research can directly benefit patients. However, we believe that our study teaches a number of important lessons that are of immediate relevance to scientists, pharmacologists and clinicians."
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Transsphenoidal Surgery Recommended for Cushing Disease With Inconclusive or Normal MRI
MaryO posted a topic in News Items and Research,
There is a consensus that the first line of treatment for Cushing disease is transsphenoidal surgery to remove the pituitary adenoma causing the disease, with an 80% remission rate following the intervention. However, in the absence of clear evidence of a pituitary adenoma on imaging, there is some controversy regarding the best treatment.
The goal of this retrospective single-center study was to assess the outcomes of surgery in patients with Cushing disease with clear evidence of a pituitary adenoma on MRI compared with outcomes in patients with inconclusive or normal MRI.
The cohort included 195 patients treated with transsphenoidal surgery between 1992 and 2018 (156 women; mean age at surgery, 41 years) classified into 4 MRI groups: 89 patients were found to have microadenoma, 18 had macroadenoma, 44 had nonspecific/inconclusive abnormalities on MRI results, and 44 had normal imaging results.
The researchers reported that MRI performance in their neuroradiology department improved with time; the proportion of inconclusive or normal MRI results decreased from 60% in 1992 to 1996 to 27% in 2012 to 2018 (P =.037).
In analyzing the influence of MRI findings on remission rates, the researchers found no significant difference among the 4 groups: remission rate was 85% for microadenomas, 94% for macroadenomas, 73% for inconclusive MRI, and 75% for negative MRI (P =.11). This finding indicates the overall percentage of patients in remission after transsphenoidal surgery is only slightly lower in those with normal or inconclusive MRI results compared with patients with clear evidence of microadenoma or macroadenoma.
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Webinar: Adrenal Insufficiency/Addison's Disease
MaryO posted a topic in Announcements,
Irina Bancos, MD
Assistant Professor of Medicine
Endocrinology Department
Mayo Clinic, Rochester, MN
Space is limited. Reserve your webinar seat.
After registering you will receive a confirmation email containing information about joining the webinar.
Contact us at webinar@pituitary.org if you have any questions.
Date: Tuesday, May 28, 2019
Time: 10:00 AM - 11:00 AM Pacific Daylight Time, 1:00 PM - 2:00 PM Eastern Daylight Time
Webinar Description
Learning Objectives:
To distinguish between primary and secondary adrenal insufficiency
To understand the pitfalls of current diagnostic tests to diagnose adrenal insufficiency.
To describe physiological replacement therapy for adrenal insufficiency
To distinguish between adrenal insufficiency and glucocorticoid withdrawal syndrome.
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Imaging Agent Effectively Detects, Localizes Tumors in Cushing’s Syndrome
MaryO posted a topic in News Items and Research,
May 20, 2019
A radioactive diagnostic agent for PET imaging effectively localized primary tumors or metastases in most adults with ectopic Cushing’s syndrome, leading to changes in clinical management for 64% of patients, according to findings from a retrospective study published in Clinical Endocrinology.
As Endocrine Today previously reported, the FDA approved the first kit for the preparation of gallium Ga-68 dotatate injection (Netspot, Advanced Accelerator Applications USA Inc.), a radioactive diagnostic agent for PET scan imaging, in June 2016. The radioactive probe is designed to help locate tumors in adult and pediatric patients with somatostatin receptor-positive neuroendocrine tumors. Ga-68 dotatate, a positron-emitting analogue of somatostatin, works by binding to the hormone.
In a retrospective review, Richard Auchus, MD, PhD, professor of pharmacology and internal medicine in the division of metabolism, endocrinology and diabetes at the University of Michigan, and colleagues analyzed data from 28 patients with ectopic Cushing’s syndrome who underwent imaging with gallium Ga-68 dotatate for identification of the primary tumor or follow-up between November 2016 and October 2018 (mean age, 50 years; 22 women). All imaging was completed at tertiary referral centers at Mayo Clinic, University of Michigan and The University of Texas MD Anderson Cancer Center. Researchers assessed patient demographics, imaging modalities, histopathological results and treatment data. Diagnosis of Cushing’s syndrome was confirmed by clinical and hormonal evaluation. The clinical impact of gallium Ga-68 dotatate was defined as the detection of primary ectopic Cushing’s syndrome or new metastatic foci, along with changes in clinical management.
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Theodore Friedman Webinar on Treatments for Insomnia
MaryO posted a topic in Announcements,
Topics to be discussed include:
• What are the causes of insomnia?
• How do hormone imbalances lead to insomnia?
• What lifestyle changes can you do to help with insomnia?
• What supplements are helpful for insomnia?
• What medicines are helpful for insomnia?
Sunday • June 2nd • 6 PM PST
<br clear="ALL">
Click here on start your meeting.or
https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=m2f7d9547a80ec47e43869517ef006f34
OR
Join by phone: (855) 797-9485
Meeting Number (Access Code): 807 924 444
Meeting Password: hormones
Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button.
For more information, email us at mail@goodhormonehealth.com
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Video: Cushing's Syndrome – Story of a Patient
MaryO posted a topic in Video,
The signs of the disease are often overlooked. It took 14 years to diagnose Ida with the disease and to start treating it successfully. On Cushing’s Awareness Day, Ida emphasizes the importance of communication between the patient and the doctor.
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Register for Johns Hopkins Pituitary Day October 19, 2019!
MaryO posted a topic in DC Metro Area Meetings,
Attendance is free, and patients can bring one guest.
Call 410-955-3921 or reserve your spot by email at pituitaryday@jmhi.edu
More information at www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/pituitary_center/index.html
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Metoclopramide Can Mask Adrenal Insufficiency After Gland Removal in BMAH Patients
MaryO posted a topic in News Items and Research,
The study, “Retention of aberrant cortisol secretion in a patient with bilateral macronodular adrenal hyperplasia after unilateral adrenalectomy,” was published in Therapeutics and Clinical Risk Management.
BMAH is a subtype of adrenal Cushing’s syndrome, characterized by the formation of nodules and enlargement of both adrenal glands.
In this condition, the production of cortisol does not depend on adrenocorticotropic hormone (ACTH) stimulation, as usually is the case. Instead, cortisol production is triggered by a variety of stimuli, such as maintaining an upright posture, eating mixed meals — those that contain fats, proteins, and carbohydrates — or exposure to certain substances.
A possible treatment for this condition is unilateral adrenalectomy. However, after the procedure, some patients cannot produce adequate amounts of cortisol. That makes it important for clinicians to closely monitor the changes in cortisol levels after surgery.
Metoclopramide, a medicine that alleviates gastrointestinal symptoms and is often used during the postoperative period, has been reported to increase the cortisol levels of BMAH patients. However, the effects of metoclopramide on BMAH patients who underwent unilateral adrenalectomy are not clear.
Researchers in Japan described the case of a 61-year-old postmenopausal woman whose levels of cortisol remained high after surgery due to metoclopramide ingestion.
The patient was first examined because she had experienced high blood pressure, abnormal lipid levels in the blood, and osteoporosis for ten years. She also was pre-obese....
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What's on *Your* Medical ID?
MaryO posted a topic in Medical Bracelets,
I loved the one that Natalie had and, after her death, I bought the same style as a way to honor her memory.
There's room for 5 lines on there - not enough for everything but enough to get me through an emergency...and I have had some.
There's also a line with my info number so when the EMTs call the tollfree number, they can get right to my complete info.
So - what do you have on yours? Please share!
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Medical ID Jewelry Often Lacks Clear Instructions For Adrenal Insufficiency
MaryO posted a topic in Medical Bracelets,
Only 4.8% of patients with adrenal insufficiency who use medical identification jewelry clearly indicate on their emblem the need for urgent parenteral hydrocortisone in the event of an adrenal crisis, potentially jeopardizing the ability to receive proper assistance in an emergency, according to a cross-sectional analysis published in Clinical Endocrinology.
“Although the use of medical identification jewelry is recommended for patients with adrenal insufficiency to assist in the prevention and treatment of an adrenal crisis, the results of this study indicate that this advice is taken up by only a modest proportion of patients,” R. Louise Rushworth, MBBS, PhD, FAFPHM, an adjunct professor and medical epidemiologist at the School of Medicine, Sydney, and the University of Notre Dame Australia, told Endocrine Today. “Patients with secondary adrenal insufficiency have a lower uptake than those with primary adrenal insufficiency despite their risk of an adrenal crisis approaching that people with primary adrenal insufficiency.”
In a cross-sectional analysis, Rushworth and colleagues analyzed data from 1,955 patients with adrenal insufficiency aged at least 20 years with an active subscription to a large medical jewelry provider (MedicAlert) as of September 2018. The researchers calculated subscription rates by adrenal insufficiency subtype, geographic area, age and sex using relevant population data.
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VIDEO: ‘Subclinical’ Cushing’s syndrome needs new name
MaryO posted a topic in Video,
In the past mild autonomous Cushing’s has been referred to as “subclinical Cushing’s syndrome.”
“What is subclinical about a patient that has, for example, cardiovascular disease and osteoporosis?” Fleseriu said.
She describes how to screen for and treat mild Cushing’s syndrome in patients with adrenal incidentalomas.
Watch the video for more.
From Helio
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Cushing's Book Review: True story of woman's abuse is open, honest
MaryO posted a topic in Cushing's Library,
The story ends well through the interventions of a therapist, a very sharp nurse and the National Institute of Health (NIH). Or. as the story's hero describes it, "a little slice of heaven carved out just for me." This is a story of straight-forward disclosure in the first-person narrative that informs, inspires and provides one person's path through the wilderness of family dysfunction, abusive hardships in the extreme and extraordinary insights.
In spite of the kindness of a therapist and a courageous divorce in which she attains freedom from abuse for herself and her daughters, Barbara cannot shake a profound depression that leads to three suicide attempts. Deeply religious and spiritual, Barbara prays for enlightenment, or at the very least, a release from mental torment. But when she is committed to a mental hospital, she experiences a jolting loss of personal freedom and brutal treatment. It seems that she has gone from a life of torment to a life of torment in a new kind of hell. But through the attentive and kind professionalism of a nurse named Nancy, who notices markings on her body that seem to indicate Barbara has an undiagnosed medical condition, just recently discussed in medical journals, Barbara is released on medical advice to an NIH hospital in Bethesda, Md. It is at that point that her story mercifully changes for the better in her climb to effective treatments for Cushing's disease, pituitary cancer and a chance to recover her life.
In her post script, the author writes, "Some stories are meant to be a secret and some stories are meant to be forgotten. Some stories need to be heard to help the survivor live. There is help for women battling domestic violence, child abuse, suicide and Cushing's disease." There are links and resources for that kind of help at the end of the book.
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New discoveries offer possible Cushing’s disease cure
MaryO posted a topic in News Items and Research,
There are several challenges clinicians confront in the diagnosis and treatment of Cushing’s disease, Shlomo Melmed, MB, ChB, FRCP, MACP, dean, executive vice president and professor of medicine at Cedars-Sinai Medical Center in Los Angeles, said during a plenary presentation. Patients who present with Cushing’s disease typically have depression, impaired mental function and hypertension and are at high risk for stroke, myocardial infarction, thrombosis, dyslipidemia and other metabolic disorders, Melmed said. Available therapies, which range from surgery and radiation to the somatostatin analogue pasireotide (Signifor LAR, Novartis), are often followed by disease recurrence. Cushing’s disease is fatal without treatment; the median survival if uncontrolled is about 4.5 years, Melmed said.
“This truly is a metabolic, malignant disorder,” Melmed said. “The life expectancy today in patients who are not controlled is apparently no different from 1930.”
The outlook for Cushing’s disease is now beginning to change, Melmed said. New targets are emerging for treatment, and newly discovered molecules show promise in reducing the secretion of adrenocorticotropic hormone (ACTH) and pituitary tumor size.
“Now, we are seeing the glimmers of opportunity and optimism, that we can identify specific tumor drivers — SST5, [epidermal growth factor] receptor, cyclin inhibitors — and we can start thinking about personalized, precision treatment for these patients with a higher degree of efficacy and optimism than we could have even a year or 2 ago,” Melmed said. “This will be an opportunity for us to broaden the horizons of our investigations into this debilitating disorder.”
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