What's New?
Season's Greetings to all!
May this holiday season be filled with peace and contentment for all. I hope that you find what you seek...and that this season brings warmth, love, good health and may your Cushing's symptoms be a thing of the past.
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In this issue:
The Mystery Diagnosis TV Show titled "Lethal Diet" featuring Sharmyn McGraw (Sharm on the boards),long-time patient advocate. This show will be airing again December 27, 200 5pm EST on Discovery Health. More info 
Dr William Ludlam is moving to Seattle, WA from Portland, OR. More info as it becomes available.
Add
your
Helpful Hints for Dealing with Cushing's to the website and the
Newsletters.
Fun Games to play
online.
Order
the CUSH Cookbook
The CUSH Cookbooks are only $10.00 each including shipping and
handling.
Updated Pages on the Website:
Pictures from the Pittsburgh, PA Christmas Dinner, December 13, 2006
Helpful Hints for Dealing with Cushing's
Testimonials
General Cushing's Info:
NIH ANNOUNCES LICENSING OPPORTUNITIES FOR RARE DISEASE TECHNOLOGIES
PDE11A as a Novel Therapeutic Target for Inherited Form of Cushing Syndrome and Endocrine Tumors
A Novel Nuclear Receptor Cofactor Modulates Glucocorticoid-Responsive Gene Expression
Adrenal:
Why Some Women Have Mustaches
Pituitary:
Pituitary -- Small Gland With Big Responsibilities
CLINICAL REVIEW: Hypopituitarism
Options improving for patients with acromegaly and gigantism, says endocrinology expert
General Health
Polycystic Ovarian Syndrome, an introduction for psychiatrists
Vitiligo causes white patches on skin
Newest
site features: bios, Helpful Doctors
US
Postage Stamps for Cushing's Awareness
Order
Cushing's Awareness Silicone Bands for yourself, a family member or donate
to a Cushing's patient at NIH
Upcoming
Meetings: Las Vegas, NV; Washington, DC and Toronto ENDO 2007.
More
info below.
.
List of
donors
.
Donate
.
Donations pay for...
CUSH Cookbooks are here!
Any profits will go to help bring awareness for Cushings.
Thank you!
The cookbooks have about 169 recipes, so it isn't a huge cookbook,
but one that includes contributions from many Cushing's message board members.
To purchase a cookbook send a check to:
CUSH
PO Box 1843
Florence, AL.
35631-1843
please indicate on your check "Cookbook" or include a note with payment.
You can also purchase cookbooks through Paypal. Please indicate that the
payment is for "cookbook."
Be sure that your correct mailing address is included with payment along with a
contact phone number in case we have questions concerning your order.
If anyone has any questions concerning cookbook payments please contact CUSH
Treasurer Cathy Gifford at CUSHOrg@aol.com
Pictures from the Pittsburgh, PA Christmas Dinner, December 13, 2006
Click here
Helpful Hints for Dealing with Cushing's:
http://www.cushings-help.com/helpful_hints.htm
It is absolutely critical for your physical and emotional health for you to have a doctor with expertise and experience with Cushing's! Inexperienced doctors all too often misdiagnose, insult and frustrate, preventing prompt and proper diagnosis. Misdiagnosis can be lethal!
Obviously, it is also crucial for you to have a surgeon with experience in order to minimize the likelihood of errors that can lead to complications or death. Wouldn't you prefer someone who performs the surgery 5 days per week over someone who may have done it a total of 5 times in his or her career?
On the other hand, doctors with experience are most likely to be more thorough and precise in recommending and offering the proper tests and treatments, and more aware of the subtle nuances and possible complications of the syndrome, learning from each Cushing's patient s/he treats, to the benefit of others.
Investigate your insurance, and if necessary (and possible), change your coverage in order to be able to afford to go to doctors who are Cushing's experts. Because Cushing's is often caused by a tumor, some insurance (including United Health Care) covers Cushing's related medical expenses including travel to facilities they consider "cancer centers for excellence" if you need to travel over 100 miles to these experts. United Health Care covers medical expenses with no co-pay, including travel, lodging and meals for myself and a travel companion so that I am able to afford the best medical care possible from doctors who are experienced with Cushing's.
~ Judi's bio
The most important advice I have to give is this:
1) GO TO A TEACHING/RESEARCH HOSPITAL!!!
2) If you have kids, think twice before eating disorder treatment. I went into the program with pain and a method of coping. I came out with an eating disorder psyche, bad experiences, and a truckload of pills that were making me crazy.
3) IF YOU THINK YOU HAVE FOOD DEPENDANT CUSHINGS, HERE IS HOW I COPE;
• the cortisol goes up with too much of any protein, fat or carbs. I eat small turkey/cheese sandwiches at every meal (enough to be full, but well balanced).4) Remember the squeekiest wheel gets the grease.
• I use stevia instead of sugar because its natural (health food aisle.)
• alcohol really hurts now, so only a little wine occassionally.
• lots of yogurts.
• every couple days a mixture of senna laxative and stool softener (not too often)
~ Magdalena's bio
Testimonials: http://www.cushings-help.com/testimonials.htm
There is no question in my mind that without this community of people and the information on this site I would not be alive. They say that elderly people "know" when they're dying....well so do young people! I've known for 18 months that my body was dying.....just shutting down but couldn't find anyone who could figure out why. Low cortisol is about as fatigued as you can get.....then adding iron deficiency where your red blood cells are not getting enough oxygen to your body.....and you've got a dying woman!
I do have much more hope and knowledge is truly powerful. Without my friends from here I would have caved and not gotten up again. This is going to be a fight to the end. Nothing has been easy and I don't expect it to change. After reading the "spoons story" on here that Robin provided I realize that it is all about using your energy wisely everyday.
The people in this community are the toughest, most resiliant, guttiest, hero's I know. Running into a burning building to save a child is one thing, but living day in and day out with a rare disease that eats away at you day by day, while murads of doctors tell you to just try harder, eat less, exercise more.......THAT is a hero. Having the courage to live every day while you're barely existing is courage beyond belief! You are all my hero's and I'm proud to know you and "serve" beside you. It's my hope that I can be half as helpful and encouraging as you've been to me. What did we do before the internet?? MaryO you are what makes me inspired.
From Gina's bio.
I have learned so much from the dear folks on this site and look forward to our continued sharing of support!
Mom has always talked about her friends from the message board and has always said wonderful things about all of you. It has been a pleasure meeting those of you who were in Pittsburgh this week. I am so thankful that she has a support group. It is hard for our family to understand what she is going through and as supportive as we are she still needs other people who have felt or are feeling the same things as she. I thank God that she has all of you. It means the world to me. Your love and kindness and help are much appreciated. Thank you for all of the prayers and well wishes. I have learned more about this disease in the past 3 days than in the past year. I honestly don't think mom (Robin) wanted us to know how bad she felt...she is such a strong woman. I now realize that it has been even harder for her than I've known. I love her dearly and hope all goes well.
To those who are reading, to those who have helped me so much on these boards, to you who share your wonderful well-wishes, caring, and humor, and to MaryO who has made all this possible.
News Items:
PDE11A as a Novel Therapeutic Target for Inherited Form of Cushing Syndrome and Endocrine Tumors
The Mystery Diagnosis TV Show titled "Deadly Diet" featuring Sharmyn's story will be airing again December 27, 200 5pm EST on Discovery Health. More info
U.S. Department of Health and Human Services
NATIONAL INSTITUTES OF HEALTH
NIH News
Office of the Director (OD)
FOR IMMEDIATE RELEASE: Monday, December 11, 2006
CONTACT: Kelli Marciel, ORD, 301-496-4819,
The National Institutes of Health (NIH) launched a new website today offering technologies available for commercial licensing that are related to rare diseases or conditions. The listing can be found at
The new resource was developed by the Office of Rare Diseases (ORD) and the Office of Technology Transfer (OTT) at the NIH. "By making it much easier for pharmaceutical companies and academic institutions to identify licensing opportunities, this new site will help facilitate the transfer of research advances from bench to bedside where the interventions can ultimately benefit patients," said NIH Director, Elias Zerhouni, M.D.
A rare disease is defined as one with prevalence less than 200,000 in the United States*. There are an estimated 25 to 30 million people in the United States with one of over 6,500 known rare diseases. Though technically "rare," some rare diseases are familiar, such as meningitis (inflammation of membranes of the brain and spinal cord most commonly caused by a bacterial or viral infection) and Lou Gehrig's Disease (amyotrophic lateral sclerosis, or ALS, a chronic, progressive disease marked by gradual degeneration of the nerve cells in the central nervous system that control voluntary muscle movement).
Stephen Groft, Pharm.D., Director of ORD, explained that, "Because relatively few people are affected by any one rare disease, finding therapies for each poses unique challenges and requires innovative approaches." He added, "We're excited about this new mechanism to foster collaboration with the private sector and the potential to make a real difference for patients."
The website module was developed by OTT and ORD in an attempt to provide a more collaborative, consolidated, and systematic approach to the development of products for rare diseases and conditions. "In addition to the technologies already available on the site, we encourage not-for profit organizations, academic research centers and foundations in the U.S. and abroad to submit technologies available for licensing from their institutions," said Mark Rohrbaugh, Ph.D., J.D., Director of OTT. Parties interested in licensing will be directed to the institution owning the technology. More information about submitting additional technologies can be found at
The NIH OFFICE OF TECHNOLOGY TRANSFER evaluates, protects, licenses, monitors, and manages the NIH and FDA intramural invention portfolios to carry out the mandates of the Federal Technology Transfer Act of 1986. For more information about OTT and its programs, visit
The NIH OFFICE OF RARE DISEASES stimulates and coordinates research on rare diseases and supports research to respond to the needs of patients, healthcare providers and the research communities involved in the care, treatment, and evaluation of products for the preventions, diagnosis, or treatment of theses conditions. For more information about ORD and its programs, visit
The National Institutes of Health (NIH) -- The Nation's Medical Research Agency -- is comprised of 27 Institutes and Centers and is a component of the U. S. Department of Health and Human Services. It is the primary Federal agency for conducting and supporting basic, clinical, and translational medical research, and investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit
---------------------------------
*The term "rare (or orphan) disease," as defined in the Orphan Drug Act, is a condition affecting fewer than 200,000 in the United States or a disease with a greater prevalence but for which no expectation exists that the costs of developing or distributing a drug can be recovered from the sale of the drug in the United States.
--------------------------------
This NIH News Release is available online at:
To subscribe (or unsubscribe) from this list, go to
http://list.nih.gov/cgi-bin/wa?SUBED1=nihpress&A=1.
Description of Invention:
Cushing Syndrome, a disorder associated with excess production of a steroid hormone, cortisol, affects up to 10 per 15 million people every year. Cushing Syndrome may be caused by several reasons such as cortisol-producing endocrine tumors and can be inherited in some instances. Surgery of the adrenal tumor is the most common method of treatment. New diagnostic and therapeutic approaches need to be developed for successful management of the disease.
This technology describes the clinical identification of a new disease termed ?isolated micronodular adrenocortical disease? (iMAD), as well as the role of PDE11A gene in this disease. Additionally, the technology also identifies particular sequence variants of the PDE11A gene associated with abnormal or altered function of the gene, PDE11A as a potential novel drug target for the treatment of bilateral adrenal hyperplasia, and possibly other endocrine tumors and malignancies.
Applications and Modality:
Market:
Development Status:
The technology is currently in the pre-clinical stage of development.
Dr. Constantine A. Stratakis (NICHD)Inventors:
DHHS Reference No. E-027-2006/0 -- Patent Status:
U.S. Provisional Application No. 60/761,446 filed 24 Jan 2006 entitled ?PDE11A mutations in Adrenal Diseases?
Relevant Publication:
A Horvath et al. A genome-wide scan identifies mutations in the gene encoding phosphodiesterase 11A4 (PDE11A) in individuals with adrenocortical hyperplasia. Nat Genet. 2006 Jul;38(7):794-800. Epub 2006 Jun 11, doi:10.1038/ng1809. [PubMed abs]Licensing Status:
Available for exclusive and non-exclusive license.
Collaborative Research Opportunity:
The NICHD Heritable Disorders Branch is seeking statements of capability or interest from parties interested in collaborative research to further develop, evaluate, or commercialize testing for PDE11A genetic or functional defects in endocrine disease, and endocrine and other tumors or cancers. Please contact Betty Tong, Ph.D. at 301-594-4263 or tongb@mail.nih.gov for more information.Portfolios:
Cancer
Cancer - Diagnostics
Cancer - Diagnostics - In Vitro
Cancer - Diagnostics - In Vitro - DNA Based
Cancer - Therapeutics
Mojdeh Bahar J.D.For Additional Information Please Contact:
NIH Office of Technology Transfer
6011 Executive Blvd, Suite 325
Rockville, MD 20852-3804
Phone: (301)435-2950
Email: baharm@mail.nih.gov
Fax: (301) 402-0220
Web Ref: 1463
Last Updated On: 10/06
A Novel Nuclear Receptor Cofactor Modulates Glucocorticoid-Responsive Gene Expression
Description of Invention:
Nuclear receptors are ligand-activated transcription factors that regulate a wide range of biological processes and dysfunction of these receptors can lead to proliferative, reproductive and metabolic diseases, such as cancer, infertility, obesity and diabetes. Nuclear receptors are the second largest class of drug targets and the market for nuclear receptor targeted drugs is estimated to be almost 15% of the $400 billion global pharmaceutical market. Researchers at the National Institute of Diabetes and Digestive and Kidney Disease have isolated a novel protein termed STAMP (SRC-1 and TIF-2 Associated Modulatory Protein) that interacts with the biologically active domains of the coactivators TIF-2 and SRC-1 (J. Biol. Chem. (2002) 51,49256-66) and present data which support a role for STAMP as an important new factor in the glucocorticoid regulatory network. There remains a need for novel therapeutics that specifically block or enhance specific genes and an emerging therapeutic goal is the discovery of agents that modulate co-activators or co-repressors in a tissue specific manner.
The invention is a novel protein that plays a key role in modulating transcriptional properties of glucocorticoid receptor (GR)-steroid complexes during both gene induction and gene repression, and is likely to modulate the transcriptional properties of all the steroid receptors including androgen, mineralocorticoid and progesterone receptors. The inventors have shown that ectopically expressed STAMP protein both modulates the EC50 of glucocorticoid receptor-agonist complexes for induced genes and increases glucocorticoid receptor-repressive activity of suppressed genes in a manner that is inhibited by specific siRNAs under physiologically relevant conditions. The modulation of STAMP levels at the cell or organism level could possibly be used as a therapeutic able to modify inappropriate gene expression that occurs in certain diseases or as a result of long-term steroid treatment.
Available for licensing are claims directed to compositions which are capable of modulating the GR gene expression in a mammalian cell using DNA, siRNA or antibodies and to methods of shifting a steroid dose-response curve, where less of the steroid needs to be administered because the composition contains the STAMP polypeptide. The novel STAMP functional sequence can be used in a composition of matter claim or as a target that could be regulated by an antibody or perhaps other modulator that would vary the ability of STAMP to either induce or repress the activity of glucocorticoid receptors. Diseases that could be treated include: hypertension, diabetes, cardiovascular disease, osteoporosis, Cushing's Disease as well as any disease requiring chronic steroid treatment such as Rheumatoid Arthritis, Asthma, inflammatory and auto-immune diseases. The present invention provides a broad, flexible IP platform that should be of interest to companies which focus on nuclear receptors as drug target and lead discovery generators, as well as to companies which have the capability to develop STAMP's potential as a therapeutic.
S. Stoney Simons and Yuanzheng He (NIDDK)Inventors:
DHHS Reference No. E-056-2004/0 -- Patent Status:
U.S. Provisional Application No. 60/548,039 filed 26 Feb 2004
PCT Application No. PCT/US2005/006393 filed 25 Feb 2005, which published as WO 2005/082935 on 09 Sep 2005
Licensing Status:
In addition to licensing, the technology is available for further development through collaborative research with the inventors via a Cooperative Research and Development Agreement (CRADA).
Internal MedicinePortfolios:
Internal Medicine-Therapeutics-Cardiology-Other
Internal Medicine-Therapeutics
Internal Medicine-Other
Susan Carson D.Phil.For Additional Information Please Contact:
NIH Office of Technology Transfer
6011 Executive Blvd, Suite 325
Rockville, MD 20852-3804
Phone: (301) 435-5020
Email: carsonsu@mail.nih.gov
Fax: (301) 402-0220
Web Ref: 1033
Last Updated On: 1/05
From
Adrenal:
From http://www.sun-herald.com/NewsArchive2/121706/hn1.htm?date=121706&story=hn1.htm
12/17/06
Why Some Women Have Mustaches
DEAR DR. DONOHUE: Greetings from the Gulf side of our state. I am a news junkie. I have been in broadcasting for more than 50 years. I watch more TV news than any other television programming. Without naming names, there are two very attractive women reporters, dark-haired, who have prominent mustaches. I find this distracting.
Is unwanted hair removal so very painful or costly that they would not have it done? We have a niece with the same problem, but I would never mention it to her. What's going on? -- D.B.
ANSWER: Greetings to the Gulf side of your state. I don't live there. The mailing address makes people think I do. It happens to be a destination for mail.
Many women have hair growing in places usually reserved only for men -- the mustache area, the chin, the chest, the upper back and the arms. It's called hirsuitism (HER-sue-tizm), and it's not uncommon. About 5 percent of women in the childbearing years have it, and more women develop it after menopause. It has to do with the balance between male and female hormones. Women make male hormones. Some make slightly more than normal, and other women might have hair follicles that are more sensitive to male hormones than they should be. In either case, hirsuitism is the result. It might be the only sign of male hormone production, or there may be other signs of hormone excess.
For many, this is nothing more than a family trait. For others, it can be a sign of trouble in the adrenal gland, the thyroid gland, the pituitary gland or the ovaries.
One somewhat-common condition that produces such an imbalance is polycystic ovary syndrome.
Not every woman with mustache growth needs an exhaustive investigation, but women should mention it to their doctor to see if the doctor thinks further pursuit is in order.
A number of options are open to women who want the hair removed. Shaving and bleaching the hair are two cheap ones. Vaniqa cream -- relatively new -- can be effective. Electrolysis and laser treatments destroy the hair follicles. Electrolysis is somewhat painful, but not so greatly painful that it's unbearable. Women reporters can afford either procedure. Male hormone excess can be treated with a number of medicines, and that can rid women of unwanted hair.
From http://www.sun-herald.com/NewsArchive2/121806/hn1.htm?date=121806&story=hn1.htm
Pituitary -- Small Gland With Big Responsibilities
12/18/06
DEAR DR. DONOHUE: A close friend of mine has been diagnosed with hypopituitarism. What can you tell me about this disease? I found little information at the library. -- T.K.
ANSWER: The pituitary gland is one of the body's smallest glands, but it's one that has some of the most important functions for health. It's attached to the underside of the brain, just a little way in from the bridge of the nose.
The pituitary orchestrates the way many other glands function. Its hormones turn on those other glands. ACTH, adrenocorticotropic hormone, prods the adrenal glands to make cortisone and hormones that regulate salt retention and blood pressure. Cortisone is involved in the production of glucose, the cells' fuel, and in controlling inflammation.
The pituitary also makes hormones that direct the function of the ovaries, testes and thyroid gland. It's the source of growth hormone and the hormone that promotes milk production. Another important pituitary hormone is one that prevents too much body water from being lost into the urine.
With hypopituitarism, the gland puts out too little or none of its hormones. Weakness, weight loss, a drop in blood pressure, excessive urination and a profound change in menstrual periods are some of the consequences. If the condition isn't treated, death is the eventual result.
Treatment consists of supplying the missing hormones.
The causes of hypopituitarism are many. Brain tumors, infections of the gland, interruption of its blood supply and head trauma are some of the things that bring about gland failure.
From
http://www.redorbit.com/news/health/769652/clinical_review_hypopituitarism/?source=r_health
Posted on: Saturday, 16 December 2006, 03:00 CST
CLINICAL REVIEW: Hypopituitarism
By Collison, Kiren; Wass, John A H
1. Aetiology and epidemiology
Hypopituitarism is the partial or complete deficiency of pituitary hormones. If untreated, this can result in increased morbidity and mortality particularly from cardiovascular disease.
Recognition
Recognition of this condition is therefore important as an underlying pathology may need to be rectified and appropriate hormones may require replacement. The importance of adequate glucocorticoid replacement should be emphasised to the physician and the patient. Knowledge of dose alterations and administration during illness, Medic-Alert bracelets and steroid cards could be life- saving.
Aetiology
Hypopituitarism may be congenital or acquired (see box).
Kallmann's syndrome is a congenital cause of hypopituitarism that manifests as congenital hypogonadotropic hypogonadism and anosmia. The development of hypopiluitarisni lends to follow a characteristic order.
Growth hormone (GH) is affected first, followed by gonadotrophins, then thyroid stimulating hormone (TSH) and adrenocorticotrophic hormone (ACTH).
Prolactin deficiency is rare, except in Sheehans's syndrome which is represented by haemorrhagic infarction of the pituitary gland following blood loss after postpartum haemorrhage. Antidiuretic hormone (ADH) deficiency is rare with anterior pituitary tumours.
Epidemiology
The incidence of some degree of hypopituitarism has been reported as about 1 per 10,000 of the UK population.
There is no racial predilection, and the prevalence is higher in women. This is probably because of post-partum hypopituitarism.
2. Diagnosis
Clinical features
The clinical features are similar to those occurring when there is target gland hormone insufficiency (see box). An additional clinical feature is the amelioration of diabetes mellitus in patients with hypopituitarism due to a reduction in counter- regulatory hormones. This is known as the Houssay phenomenon.
Anterior pituitary function
To test anterior pituitary function, both pituitary hormone and target organ hormone concentrations should be measured. These include LH, FSH and testosterone or oestradiol, TSH and thyroxine, 9am cortisol, PRL and IGF-1.
Dynamic tests, such as the insulin tolerance test, are used to assess cortisol and GH reserve. The short synacthen test measures ACTH reserve.
Posterior pituitary function
To test posterior pituitary function, plasma and urine osmolalities should he measured.
These may indicate the presence of diabetes insipidus, and a water deprivation test can diagnose it formally.
Glucocorticoids must he replaced prior to assessing posterior pituitary function as ACTH deficiency leads to reduced GFR and the inability to excrete a water load, which may mask diabetes insipidus.
Investigation of the cause may include pituitary imaging (MRI), ferritin (haemochromatosis), serum and CSFACE (sarcoidosis). A visual field check should also be carried out.
3. Management
Treatment involves replacement of the target hormone rather than the deficient pituitary or hypothalamic hormone, except for GH replacement and for fertility induction (see table).
Glucocorticoids
Monitoring of glucocorticoid replacement is essential. Over- replacement is associated with increased BP, increased glucose level and reduced hone mineral density. Under-replaccment leads to symptoms seen in Addison's disease.
Monitoring involves both clinical assessment and biochemical measurement of urine and plasma cortisol. Urinary free cortisol (UFC) should be kept to <220nmol/24 hours.
The aim is to keep the plasma level between 150 and 300nmol/l, avoiding nadirs of <50nmol/l pre-dose.
Patients should wear a Medic-Alert bracelet to indicate corlisol deficiency and they should keep a vial of parenteral hydrocorlisone at home for administration during emergency situations.
Thyroid hormone replacement
Replacement is with thyroxine. as in primary hypothyroidism. In younger patients, the starting dose is 100g once daily, and in older patients with a history of ischaemic heart disease, an initial dose is 25-50g with an increase in 25g increments at four week intervals with the aim of getting T4 into the upper normal range.
Monitoring is carried out by clinical assessment and measurement of free thyroid hormone concentrations.
Oestrogen/progestogen
Oestrogen and progestogen preparations must he used in non- hysterectomised women to avoid endometrial hyperplasia. Administration can be oral, transdermal patch or gel or subcutaneous implant.
Before oestrogen replacement, patients must be assessed for risk factors for breast and endometrial cancer, thromboembolic disease and acute liver disease.
Androgen replacement
Several preparations of testosterone are available. Administration can be IM, transdermal, oral or a subcutaneous implant. Androgen replacement in women is indicated when there is poor well-being and libido despite HRT. Subcutaneous testosterone implants are the only preparation available for women.
Monitoring is required at three months and then six and 12 monthly. It involves clinical assessment, rectal examination of the prostate, serum testosterone. PSA (if over 45 years), haemoglobin and serum lipids.
GH replacement
All patients with CiH deficiency should he considered for hormone replacement, especially those with impaired well-being, reduced exercise capacity, increased central adiposity, reduced bone mineral density and adverse cardiovascular risk profile.
Current recommendations are a starting dose of 0.1-0.4mg/day and maintenance dose of 0.2-0.6mg/day. The dose in women is often higher than for age-matched men. A common side effect is fluid retention. GH replacement should be avoided in patients with active malignancy and benign inlracranial hypertension.
Monitoring involves clinical examination focusing on body weight and BP. Biochemical monitoring includes IGF-1 which should be monitored every one to two months during dose titration and then annually.
Pituitary tumours are the most common cause of hypopituitarism
Contributed by Dr Kiren Collison, senior house officer, and Professor John A H Wass, consultant endocrinologist, Churchill Hospital, Department of Endocrinology, Oxford
Copyright Haymarket Business Publications Ltd. Nov 24, 2006
(c) 2006 GP. Provided by ProQuest Information and Learning. All rights Reserved.
From http://www.eurekalert.org/pub_releases/2006-12/cmc-oif121506.php
Public release date: 15-Dec-2006
Contact: Sandy Van
sandy@prpacific.com
800-880-2397
Cedars-Sinai Medical Center
Options improving for patients with acromegaly and gigantism, says endocrinology expert
LOS ANGELES - Scientific, technological and medical advances made in the past two decades are leading to more definitive diagnoses, earlier and more effective treatment options and better outcomes for patients suffering from a condition called acromegaly, according to an article published in today's issue of the New England Journal of Medicine and authored by a specialist in endocrinology at Cedars-Sinai Medical Center.
In the article, Shlomo Melmed, M.D., senior vice president for Academic Affairs and director of the Burns and Allen Research Institute at Cedars-Sinai, provides an update on medical progress related to the condition that stems from disorders - usually tumors - of the pituitary gland. He wrote a similar review article 16 years ago, published in the same journal in 1990.
"There have been remarkable advances in the therapy of this disease. Previously, all patients required surgery and/or radiotherapy for management, but now we have a whole new armamentarium of safe drugs that can effectively control the disorder. There also have been advances in diagnosis, such as the development of more sensitive blood assays for hormones," said Melmed, who directs the medical center's Pituitary Center and holds the Helene A. and Philip E. Hixon Endowed Chair in Investigative Medicine.
"Despite the improvements, acromegaly remains a very challenging and very complex disease," he said. "If it occurs before the end of puberty, the patients become giants, suffering from a condition called gigantism. Unfortunately, several studies document a seven- to 12-year gap from symptom onset to time of diagnosis. During this time the children get bigger and their hormones get higher and the tissue damage gets worse. Therefore, the earlier we can diagnose and treat the disease, the more effectively we can control the negative implications."
Acromegaly develops when somatotrophs, cells of the pituitary gland that are responsible for producing growth hormone, proliferate and oversecrete the hormone. The overabundance of growth hormone and the related insulin-like growth factor I (IGF-I), produce a range of effects including abnormal enlargement of the extremities, soft-tissue swelling, joint and spine conditions, protrusion of the jaws, and high blood sugar levels even when fasting. Patients often suffer from such complications as heart and valve disorders, high blood pressure and respiratory dysfunction.
"In addition to the variety of medical conditions, self-image is a major issue for these patients. At Cedars-Sinai, we have support groups in which patients can share their experiences with a professional counselor, and we offer the option of cosmetic surgery, especially for the jaw," said Melmed. "We also have patient days that give patients the opportunity to meet with our physician experts and the coordinators of our support groups."
Nearly all cases of acromegaly are caused by tumors of the pituitary gland. More than 90 percent of patients with acromegaly have a slow-growing type of tumor that is found in adults over 50 years of age. Younger patients usually have a more rapidly growing tumor, and a third type of tumor, commonly encountered by patients in their teens, often causes gigantism.
In general, ideal treatment includes surgery to remove the tumor, followed by medical therapy to manage or reverse any coexisting conditions. In many cases, however, the tumor may have grown too large or is positioned too close to vital structures for complete surgical removal to be possible or practical. Also, not all patients are good candidates for surgery.
Improvements in radiation therapy and radiosurgery, along with advances in computerized imaging systems, have improved targeting of a tumor mass, minimized radiation damage to normal surrounding tissues, and reduced treatment times. Also in the past two decades, new medications have been introduced, working at the cellular and molecular levels to suppress the secretion of growth hormone, interrupt the proliferation of somatotroph cells, and block the synthesis of IGF-I. High cost and temporary, unpleasant side effects continue to be factors, and the medications are not effective in or tolerated by all patients, but new alternatives are currently undergoing clinical trials.
###
Cedars-Sinai's Pituitary Center, believed to treat and follow more patients with acromegaly than other centers in the country, combines the expertise of pituitary specialists in neuroendocrinology, neurosurgery, imaging and pathology. Many of the advances made in the field in recent years originated in Cedars-Sinai's research laboratories and clinical trials initiated at the medical center.
The study was supported by grants from the National Institutes of Health and the Helene and Philip Hixon Chair in Investigative Medicine.
Citation: New England Journal of Medicine, Dec. 14, 2006, "Acromegaly."
One of seven hospitals in California whose nurses have been honored with the prestigious Magnet designation, Cedars-Sinai Medical Center is one of the largest nonprofit academic medical centers in the Western United States. For 18 consecutive years, it has been named Los Angeles' most preferred hospital for all health needs in an independent survey of area residents. Cedars-Sinai is internationally renowned for its diagnostic and treatment capabilities and its broad spectrum of programs and services, as well as breakthroughs in biomedical research and superlative medical education. It ranks among the top 10 non-university hospitals in the nation for its research activities and is fully accredited by the Association for the Accreditation of Human Research Protection Programs, Inc. (AAHRPP). Additional information is available at www.cedars-sinai.edu.
General
Health:
New Feature! Add your
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http://rebeldoctor.blogspot.com/2006/12/polycystic-ovarian-syndrome.html
Sunday, December 17, 2006
Polycystic Ovarian Syndrome, an introduction for psychiatrists
Polycystic ovarian syndrome (PCOS), also known as Stein-Leventhal syndrome, affects 6-10 % of women of reproductive age. Characteristic features of PCOS include menstrual cycle abnormalities and hyperandrogenism. Menstrual cycle abnormalities range from a decreased frequency of menses to complete amenorrhea, though some patients have normal menstrual cycles. Abnormal uterine bleeding can occur. Fertility is decreased. Manifestations of hyperandrogenism include acne, alopecia, and hirsutism. Recently hyperinsulinemia and insulin resistance have been recognized as features of PCOS (hyperandrogenism can lead to insulin resistance, and vice versa), and women with PCOS are at increased risk of type II diabetes mellitus. Obesity is common. The pathophysiology of PCOS is incompletely understood and the components of PCOS interact with each other in a complex manner. For example, obesity can lead to insulin resistance which can lead to hyperandrogenism.
Diagnosis of PCOS requires the exclusion of other causes of hyperandrogenism and anovulation/oligo-ovulation. Since pituitary or thyroid disease can cause ovulatory dysfunction, a prolactin level and TSH should be checked. Although the luteinizing hormone (LH)/ follicle stimulating hormone (FSH) ratio is usually greater than 2.5 to 3, a normal ratio does not exclude the diagnosis. A pregnancy test should also be checked. Androgen-producing neoplasms can be excluded by checking total testosterone and dehydroepiandrosterone sulfate (DHEAS) levels. Total testosterone levels are often mildly elevated in PCOS, but a level greater than 200 ng/dl suggests a virilizing neoplasm. 17-hydroxyprogesterone should be checked to screen for late-onset congenital adrenal hyperplasia. Sometimes a dexamethasone suppression test is performed to rule out Cushing’s syndrome. Non-obese patients should be screened for anorexia nervosa.
A transvaginal ultrasound is sometimes obtained in patients with PCOS; this test can identify most virilizing tumors. However, patients with PCOS do not always have radiographically demonstrated polycystic ovaries. In addition, approximately 25% of women with normal ovulation have polycystic-appearing ovaries.
Patients with PCOS are at increased risk for cardiovascular disease due to hyperandrogenism. Therefore fasting lipids should be checked. The patient should be assessed for other cardiac risk factors, such as smoking and hypertension. Due to the association between PCOS and insulin resistance, a fasting glucose level should be checked. Some also recommend checking insulin levels or glucose tolerance testing.
One of the primary treatments for PCOS is oral contraceptives, which suppress androgens. Sometimes spironolactone, which suppresses enzymes in the androgen biosynthetic pathway, is combined with oral contraceptives. Fertility can be increased by clomiphene citrate. Metformin, an insulin-sensitizing agent, has been shown to restore menstrual regularity. Weight loss is also helpful.
Several studies suggest that PCOS is more common in women with bipolar disorder or epilepsy than in the general population. Valproate probably increases the risk of PCOS. However, since the disorders that valproate is used to treat are also associated with PCOS, valproate has not been conclusively proven to be a causative factor for PCOS.
Psychiatrists should take a detailed menstrual history in female patients with bipolar disorder. It is also important to ask about hirsutism. Patients with baseline abnormalities should be referred to a primary care doctor for further evaluation. The development of PCOS symptoms during treatment also warrants referral to a primary care doctor. Symptoms of PCOS often remit or improve after the discontinuation of valproate. Prolactin-elevating antipsychotics can also cause menstrual abnormalities, and occasionally hirsutism.
--------------------------------------------------------------------
the above is for a psychiatry newsletter article I am writing
# posted by Michael Rack, MD @ 7:25 PM. Post comments here.
From http://www.contracostatimes.com/mld/cctimes/living/health/16213188.htm
Posted on Mon, Dec. 11, 2006
DR. DONOHUE: FOR YOUR GOOD HEALTH
Vitiligo causes white patches on skin
Q: I am writing about my 7-year-old granddaughter. She has lost pigment on both of her knees, her ankles and her knuckles, and has white patches on other parts of her body. Can you explain what causes this? Is there anything to be done for her? We are so concerned about this.
A: What you describe fits vitiligo. People with the condition have an immune system that attacks melanocytes -- skin cells that contain the pigment melanin. Loss of it produces patches of white skin. The process can be widespread or limited to a few patches.
Most of the time, vitiligo just happens. For a few people, however, it's a sign of another illness. Diabetes, pernicious anemia, adrenal gland malfunction and thyroid gland disturbances are among those other illnesses.
Much can be done to stimulate restoration of melanocytes. Not all treatments work for all people. With extensive involvement, complete restoration of normal skin color is less hopeful.
Narrowband ultraviolet-B light works for some people. High-intensity light directed only at the affected skin patches also works. Calcipotriol cream -- a synthetic vitamin D -- can be helpful. It is frequently used in combination with a cortisone cream. Protopic and Elidel ointments moderate the immune attack on melanocytes and can lead to repigmentation.
Your granddaughter has many options. Her parents should make sure that the depigmented patches are protected with sunblock when she plays outside.
Newest Bios:
To add or edit your bio,
http://www.cushings-help.com/forms/bio.htm
Adrenal Patients
Judi (CushieJudi)
Judi was first diagnosed with Cushing’s 1/12/06, An MRI of the pituitary revealed a hypo-enhancing lesion approximately 5 x 4 x 3 mm. A CT of the adrenal glands in July 2006 was read as normal, but a later CT of the abdomen with contrast demonstrated a possible 1.3 cm low-density lesion in the left adrenal gland. If Cushing’s disease is diagnosed via the IPSS, Dr. Russell will schedule transsphenoidal surgery by Dr. Brooke Swearingen at Mass General. Following the transsphenoidal surgery and cure of the Cushing’s, if her hypertension persists, Dr. Russell recommends screening for hyperaldosteronism with a plasma aldosterone level to renin activity ratio.
Batavia, NY
Natalie (NatalieC)
Natalie is Adrenal Insufficient (Addison's) due to a BLA. She was in a clinical trial at NIH and now goes to Johns Hopkins. She has also had Gastric Bypass surgery.
Rockville, MD
Ectopic
Patients
Laura S (LauraSpain)
Laura has ectopic Cushing's. The tumor was never located so she had a BLA. She was fine for a year but is having crises again.
Barcelona, Spain
Food-Dependant / GIP-Dependant Cushing's Syndrome Patients
Magdalena (Mballerina)
Magdalena has Food-Dependant / GIP-Dependant Cushing's Syndrome. This means that genetically, she has cells on her adrenals that are only supposed to be in her intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So when she eats, the hormone triggers her adrenal glands and they produce cortisol. It is an ectopic response that is ACTH-independant.
Windsor, Ontario
(Originally Poland)
Not Yet Diagnosed Patients
Kathy
Kathy has not yet been diagnosed with Cushing's but was diagnosed with Juvenille Diabetes at age 7. She has had emergency eye surgery and a kidney/pancreas transplant although the pancreas only lasted about a year. She takes prednisone which she thinks is causing Cushing's symptoms.
Michigan
Vivian (Vivi)
Vivian is not yet diagnosed with Cushing's but has many symptoms. Her primary doctor gave her a preliminary diagnosis of Adrenal Hyperplasia but her endo says that it's not...
Manhattan, NY
Pituitary Patients
Judi (CushieJudi)
Judi was first diagnosed with Cushing’s 1/12/06, An MRI of the pituitary revealed a hypo-enhancing lesion approximately 5 x 4 x 3 mm. A CT of the adrenal glands in July 2006 was read as normal, but a later CT of the abdomen with contrast demonstrated a possible 1.3 cm low-density lesion in the left adrenal gland. If Cushing’s disease is diagnosed via the IPSS, Dr. Russell will schedule transsphenoidal surgery by Dr. Brooke Swearingen at Mass General. Following the transsphenoidal surgery and cure of the Cushing’s, if her hypertension persists, Dr. Russell recommends screening for hyperaldosteronism with a plasma aldosterone level to renin activity ratio.
Batavia, NY
Kirby (Kirby)
Kirby has been diagnosed with Pituitary Cushing's, Diabetes and PCOS.
Washington State
Steroid Induced Cushing's
Gina (da89165)
Gina has steroid induced Cushing's following post-op IV steroid injections. She also has tyroid issues and many Cushing's symptoms
Indianapolis, IN
To add or edit your bio,
http://www.cushings-help.com/forms/bio.htm
Newest Helpful Doctors:
Dr William Ludlam is moving to Seattle, WA from Portland, OR. More info as it becomes available. Please wait until after January 1st to email Dr Ludlam.
Steven J. Russell, M.D., Ph.D.
Neuroendocrine Clinical Center
Massachusetts General Hospital Neuroendocrine Clinical Center
Zero Emerson Place, Suite 112
Boston, MA 02114
Phone: 6177267948
Fax: 6177261241
http://pituitary.mgh.harvard.edu
Dr. Russell is knowledgeable, professional, thorough, and caring, and I consider myself truly blessed to be under his care.
Boston, MA
Dr. Rosario Briones-Urbina M.D., Ph.D., FRCP(C)
Sunnybrooke Women's College Hospital
Endocrinology & Metabolism
Assistant Professor U of Toronto
Burton Hall
60 Grosvenor Street, Room 404
Toronto, ON, Canada, M5S 1B6
Phone: 4163236088
Fax: 4163236093
Dr. Briones-Urbina is wonderful. Though she is very stern, she is very knowledgeable. She will take an hour at a time to completely explain your disease to you. She talks to you like a professor to a student without dumbing anything down. If you really want to see her, she will see you. She is very willing to listen to your opinion about what is happening, though she may not always accept it. She is what a doctor should be. I am so glad to have found her.
Toronto, ON, Canada
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