Obesity, excess neck fat and the ability to easily bruise are just a few signs of this commonly overlooked condition. Often it is caused by a tumor in the adrenal gland, which may be cancerous. Nancy D. Perrier, M.D., F.A.C.S., chief of the Section of Surgical Endocrinology at MD Anderson Cancer Center, discusses this disorder and the difference between the syndrome and disease.
Guest(s): Nancy D. Perrier, M.D., F.A.C.S.
Wednesday, March 9, 2011
Cushing's Syndrome and Disease: A Disorder That Often Goes Undiagnosed
Thursday, February 24, 2011
Multiple endocrine neoplasia type 1 and adrenal Cushing's
Multiple endocrine neoplasia type 1 (MEN1) is typically associated with adrenocorticotropic hormone (ACTH)-dependent Cushing's. However this case illustrates a rare association between MEN1 and adrenergic Cushing's.
Case report
A 35-year-old man presented to his general practitioner with hypertension in February 2006. During routine investigations he was noted to have mildly deranged liver function [ALT 59 IU/L (8–40 IU/L), GGT 178 IU/L (10–50 IU/L)] and an ultrasound scan showed mild fatty infiltration and bilateral renal calculi. He was referred to the urology department for investigation of renal stones and a CT intravenous urogram showed multiple renal calculi and a 6×5×5 cm soft tissue enhancing lesion within the right adrenal gland and a 7 mm calcified density within the body of the pancreas (Figure 1). He was therefore referred to our endocrinology department for further diagnostic work-up.
View larger version:
Figure 1
CT scan of the abdomen demonstrating an adrenal adenoma
On examination he had centripetal obesity, gynaecomastia and facial plethora. His initial blood tests revealed elevated calcium of 3.03 mmol/L (2.1–2.5 mmol/L) associated with an elevated PTH of 27.5 pmol/L (1.5–7 pmol/L). Baseline pituitary profile revealed raised prolactin of 1143 mU/L (80–400 mU/L) with normal thyroid and sex hormone levels. MRI scan of the pituitary demonstrated a focal 7 mm non-enhancing abnormality seen in the left side of the pituitary gland in keeping with a small microadenoma (Figure 2). An overnight dexamethasone suppression test and low dose dexamethasone suppression tests were both positive, with suppressed basal ACTH (Table 1). His 24-hour catecholamine excretion, renin-aldosterone ratio and fasting gut hormone profile were normal.
View larger version:
Figure 2
MRI of the pituitary demonstrating a pituitary adenoma
View this table:
Table 1
Results of dynamic endocrine tests
The above investigations led us to conclude that he had adrenal Cushing's associated with primary hyperparathyroidism and a pituitary microadenoma. His adrenal Cushing's was treated first in July 2008 by laparoscopic adrenalectomy confirming a glucocorticoid adenoma. His sesta Mibi parathyroid scan revealed increased uptake in the left inferior position suggestive of parathyroid adenoma, but there was also delayed uptake in the other three parathyroid glands. He therefore had a four gland parathyroidectomy in December 2008 which confirmed parathyroid hyperplasia.
The combination of parathyroid hyperplasia and pituitary microadenoma was suggestive of MEN Type 1. This was confirmed by genotype testing which showed the presence of a C to T nucleotide substitution of exon 4 of MEN 1 (c.781C > T). He has been referred on to the regional MEN clinic for family screening.
Discussion
Multiple endocrine neoplasia (MEN1) is characterized by the presence of tumours related to two or more endocrine glands in the same patient. MEN1 usually involves the parathyroids (95%), pancreas (40%) or the pituitary (29%)1 but occasionally other endocrine glands are involved as well. The underlying genetic basis is the homozygous inactivation of the tumour suppressive menin gene on chromosome 11q13.2 MEN1 is an autosomal dominant genetic disorder but up to 10% of patients have de novo mutations.
Glucocorticoid excess in MEN1 is usually caused by ACTH-secreting pituitary adenomas. In contrast Cushing's syndrome due to adrenocortical adenomas/carcinomas is very rare with a few case reports in the medical literature.3 The prevalence of adrenal lesions in patients with MEN1 varies from 36% to 73% in various case series.4,5 This is in contrast to the general population where 5–10% have adrenal lesions.6 The adrenal lesions in MEN1 vary from nodular hyperplasia to adenomas and cysts (and very rarely carcinomas).7 However these lesions are often incidental findings and are predominantly non-functional.5 In MEN1 patients with adrenal lesions pancreatic tumours tended to be over-represented implying a polyclonal adrenal proliferation related to pancreatic tumour genesis.5
The Menin gene has an important role in cell growth and mutations in this gene lead to the loss of this tumour suppressive property. This is likely to increase the growth of different tumours. Indeed Bhuiyan et al. have demonstrated the upregulated expression of MEN1 mRNA and menin protein in adrenocortical adenomas and carcinomas that are associated with MEN17 implying that the Menin gene is likely to have a role in the pathogenesis of these tumours.
Conclusion
This case report discusses a patient with a rare combination of MEN1 and a glucocorticoid secreting adrenal adenoma. The clinical implication of this is that clinicians looking after patients with Cushing's syndrome need to be aware of the possibility of MEN1 as an underlying cause and furthermore in patients with MEN1 there should be a high degree of clinical suspicion regarding the possibility of various endocrinopathies that are not in the standard list for MEN1.
DECLARATIONS
Competing interests
None declared
Funding
None
Ethical approval
Written informed consent to publication has been obtained from the patient or next of kin
Guarantor
KV
Contributorship
All authors contributed equally
Acknowledgements
None
Reviewer
Tzu Yuan Wang
- © 2011 Royal Society of Medicine Press
This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by-nc/2.0/), which permits non-commercial use, distribution and reproduction in any medium, provided the original work is properly cited.
References
From http://shortreports.rsmjournals.com/content/2/2/10.full
Playing with the new QR barcodes
If you take a picture of this with a mobile phone scanner app, it will take you directly to http://www.cushie.info
I think I'll make something a bit more complicated with info for new Cushies to post here and there...
Saturday, February 5, 2011
Rare Disease Day at NIH
On February 28, 2011, the National Institutes of Health (NIH) will celebrate the 4th annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, the NIH Institutes and Centers, the Health Resources and Services Administration (HRSA), the Food & Drug Administration’s Office of Orphan Product Development (OOPD), the National Organization for Rare Disorders (NORD), and the Genetic Alliance. Rare Disease Day at NIH (RDD@NIH) will be held in the Lipsett Amphitheater from 8:30AM to 5:15PM.
In addition to the various scheduled talks, we expect to have posters and exhibits from many groups relevant to the rare diseases research community. Attendance is free and open to the public. In association with the Global Genes Project, we encourage all attendees to wear their favorite pair of jeans. You can view the agenda here.
While attendance is free, we would like to know how many people are planning to attend so that we can prepare accordingly. If you would like to attend, please register here. If you would like to display a poster or exhibit, please contact Dr. David J. Eckstein at eckstein@od.nih.gov for more information.
Sign language interpreters will be provided. Individuals with disabilities who need reasonable accommodation to participate in this event should contact Kimberly Potter at kpotter@icfi.com or 301-251-4962 or the Federal TTY Relay number at 1-800-877-8339.
About Rare Disease Day
Rare Disease Day was established to raise awareness with the public about rare diseases, the challenges encountered by those affected, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients' lives. The focus of Rare Disease Day 2010 was 'Patients and Researchers, Partners for Life!' and is aligned with ORDR's philosophy that researchers need to work closely with patients and patient advocacy groups to maximize chances for success. This philosophy has been put into practice in our very successful Rare Diseases Clinical Research Network.
There are about 7000 rare diseases identified in the United States. About 80% of rare diseases are genetic in origin and about 75% affect children. Rare diseases can be chronic, progressive, debilitating, disabling, severe and life-threatening. Information is often scarce and research is usually insufficient. People affected face challenges such as delays in obtaining a diagnosis, misdiagnosis, psychological burden and lack of support services for the patient and family. The goals remain for rare disease patients to obtain the highest attainable standard of health and to be provided the resources required to overcome common obstacles in their lives.By highlighting these issues, the NIH Office of Rare Diseases Research hopes to
- Raise awareness of rare diseases
- Strengthen the voice of patients and patient advocacy groups
- Give hope and information to patients
- Bring stakeholders closer together
- Coordinate policy actions within the United States and with other countries
- Inspire continued growth of the awareness of rare diseases
- Emphasize rare disease research and the search for new therapeutics
- Get equality in access to care and treatment
The first Rare Disease Day sponsored by EURORDIS was held in Europe on February 29, 2008. February 29th was chosen since it is a rare day and it is symbolic of rare diseases. 2009 was the first time that Rare Disease Day was observed in the U.S. In addition to 17 European countries participating in Rare Disease Day 2009, the United States was joined by Argentina, Australia, Canada, China, Colombia, and Taiwan in celebrating the first global Rare Disease Day. The National Organization for Rare Disorders serves as the coordinator of this activity in the United States.
Progeria BriefingTimed to correspond with the celebration of Rare Disease Day 2010, the Coalition for the Life Sciences is hosting a briefing of the Congressional Biomedical Research Caucus on “Children Aging Before Their Time: Can Progeria Now Be Treated?” The Congressional Biomedical Research Caucus provides a forum where members and staff can interact directly with preeminent researchers responsible for important scientific discoveries. For details, view the progeria briefing - (PDF, 37KB).
-->The Global Genes Project
This group has grown and continues to add individuals and organizations that want to be involved. The hope is that the rare disease community as a whole will view this initiative as an opportunity to build unity around this important cause. The goal is to create a platform for collaboration, while building awareness about the prevalence of rare diseases, educating the public about genes and the impact they play in rare diseases, and engaging support from the general public.
There are numerous organizations that are working to help some of the individual diseases. They are funding much needed research, helping drive policy and develop educational programs, all in an effort to bring hope to this underserved community. The Global Genes Project encourages those who are concerned and compelled to join the cause to help both individual rare disease organizations, children and their families affected, as well as the community as a whole.
Friday, February 4, 2011
Dr. Ted Friedman will return for his Third Live Voice Interview, February 13, 2011
Theodore C. Friedman, M.D., Ph.D. has opened a private practice, specializing in treating patients with adrenal, pituitary, thyroid and fatigue disorders. Dr. Friedman has privileges at Cedars-Sinai Medical Center and Martin Luther King Medical Center. His practice includes detecting and treating hormone imbalances, including hormone replacement therapy. Dr. Friedman is also an expert in diagnosing and treating pituitary disorders, including Cushings disease and syndrome.
Dr. Friedman's career reflects his ongoing quest to better understand and treat endocrine problems. With both medical and research doctoral degrees, he has conducted studies and cared for patients at some of the country's most prestigious institutions, including the University of Michigan, the National Institutes of Health, Cedars-Sinai Medical Center, and UCLA's Charles Drew University of Medicine and Science.
He's the "Dr House" of endocrinology. He loves complicated cases and is an outstanding diagnostician.
He also has a PhD in pharmacology.
by Theodore C., M.D., Ph.D. Friedman (Author), Winnie Yu (Author)
If you have a thyroid condition, you are not alone. An estimated 13 million Americans suffer from thyroid disease. The Everything Health Guide to Thyroid Disease, cowritten by acclaimed thyroid specialist, Theodore C. Friedman, is the authoritative handbook you need to help you live with this disease. You'll learn about:
- How the thyroid functions and dysfunctions
- Who is at risk for thyroid disease
- Well-known thyroid disorders-hyper, hypo, and Grave's disease
- Far-reaching effects (weight loss and gain, anxiety, depression)
- Treatments and living with the disease
Complete with a glossary, additional resources, and even a section on thyroid disease in children, The Everything Health Guide to Thyroid Disease is the complete guide for everyday healthy living.
Kate (Fairley) and Dr. Ted Friedman on National Geographic TV, September 2007
Read Dr. Friedman's First Guest Chat, November 11, 2003.
Read Dr. Friedman's Second Guest Chat, March 2, 2004.
Listen to Dr. Friedman First Live Voice Interview, January 29, 2009.
Listen to Dr. Friedman Second Live Voice Interview, March 13, 2009.
Dr Ted Friedman will return for his Third Live Voice Interview, February 13, 2011, 9:00PM eastern. Listen live at http://www.blogtalkradio.com/CushingsHelp
Thursday, February 3, 2011
Cushie 12-Step Program
I “acquired” this from another site and changed the names to protect the innocent…
As you know many of us Cushies have had or have an addiction to Googling.
I suggest anyone who feels compelled to google symptoms go to the message boards to ask for support instead of typing these or any words such as “buffalo hump” in the google search engine. When this is done all roads lead to one thing…… You Eat Too Much!; You’re Depressed!
So, anyone who is about to hit enter on their computer which feeds their Google addiction…. go to the message boards to ask for help. One of the other Cushies who have achieved “Google sobriety” will help you down of the ledge.
1. Admit for now that you are powerless over your urge to Google.
2. Believe that a power greater than you (that would be other Cushies) can help you off that ledge
3. Decide to turn your “fingers” over to a higher power as you understand it.
4. Make a searching and fearless inventory of what you hope to gain from googling.
5. Admit to yourself and to another human being the exact nature of your addiction to Google.
6. Allow other Cushies to assist you when you are so scared you are thinking about googling symptoms.
7. Humbly ask for Xanax, Klonopin or Cortef in order to calm yourself from googling symptoms
8. Make a list of all the diseases you think you have or have had and survived and have a burning ceremony and then…. take a nap.
9. Cite all Google sites you have searched diseases on and delete them from your favorites/history.
10. When you start thinking….STOP….. do something else, like take an inventory of your test results.
11. Seek through prayer and/or meditation to improve your thought process. Do not travel to “OMG’ or “What if” land (this is a serious suggestion).
12. Having had a spiritual awakening as a result of these steps, carry this message to all your Cushie friends and anyone else you know who has a Google addiction.13. Now I know there isn’t a 13th step, however, if you have noticed you are drinking too much wine or taking too many pills, please remember there are other 12 step programs for that, lol…
So, what about it – what are *your* suggestions to cure Google Addiction?
Add this page to your favorite Social Bookmarking websites
via cushie.info
Medical Bracelets
Over the years there has been a lot of discussion about Medical bracelets and other awareness jewelery. What should it say? How can we be sure that the proper personnel reads it?
Many doctors insist that everyone who has had pituitary or adrenal surgery have a bracelet – and some will even tell patients what they should say on them.
While I was still a patient at the NIH (National Institutes of Health) after my pituitary surgery, I was given my first bracelet along with my kit in care of adrenal crisis. I had to learn to give myself a shot before I could go home.
Now, my endo checks mine at every visit to be sure I’m wearing my bracelet and reads it to be sure it’s still legible and checks to see what the text says.
He feels that the bracelets – and he insists that they LOOK like medic alert bracelets, not disguised as jewelry – are life savers.
I’m not so sure – I read stories on the message boards that people have gone into AI (adrenal insufficiency and no one has ever looked at their bracelet. That was certainly the case for young Sam. Her mom had instructions everywhere, none were heeded and the situation rapidly turned disastrous.
…We have dealt with Addison’s for 7 years; but I have handled everything. Apparently the vials of solu-cortef with step-by-step instructions hanging on the bulletin board in the kitchen, medicine cabinet and in every vehicle somehow missed his attention… (read the whole story at survive the journey: Stars Go Blue)
A Paramedic wrote on the message boards:
I’d like to add a couple things from the perspective of a Paramedic…
A lot of us are not taught about adrenal insufficiency during our education….nor do many of us (if any at all) have a protocol to administer Injectable for AI unless we are able to contact the ER doctor for permission. So…if any of you should have an AI crisis please gently nudge your paramedic to contact the receiving physician for permission to administer the medication. I know this sounds like a lot of responsibility on the part of the patient…but you have to realize that we’re taught to recognize the most common life threats and endocrine disorders (other than diabetes) most usually do not present with life threats (we all know that as cushing’s is more recognized that this will change)…and our protocols cover the most common life threats….so while we may recognize that you are hypotensive and need fluids (IV) and are sweaty, nauseated, decreased level of responsiveness etc…we are not equipped to deal with the actual cause unless you help educate us….
Also…please don’t get angry with us….if we are having problems understanding…just gently insist that a call be made to your doctor or the receiving ED (usually not feasible for us to call your doctor since they do not come to the phone for just anybody but if you have access to them, as many cushies do, it would be great to talk to them)…
Paramedicine is evolving….someday soon, hopefully, our education will include more diagnostic skills…untill just in the past 5 years or so we were NEVER to make a diagnosis at all…just treat the symptoms!!!! So there is hope out there for futher understanding of such a critical problem for those without adrenal (or asleep adrenals) glands….
The medical alert jewelry is a life-saver and we do look for it….
So, the questions for discussion are:
- Do you have a medical alert bracelet
- Does your doctor check on it or suggest proper wording.
- If you have one, has any medical staff read it during a crisis
- And… what does yours say?
We Can Do It!
Adapted from an email from Tom O'Connor to a third party:
We can do it. We are facing some obstacles but we will chart our way through the dangerous terrain.
And we will... help you build a happier life.
The links below take you to my wife Mary O’Connor’s story.
Mary went from working alone researching a rare disease in a library (pre-Internet)
To diagnosing the illness herself
To finally finding a doctor who agreed with her
(After seeing a dozen or so who did not and who prescribed measures that would have failed and led to her death)
Then to a successful operation at NIH, one of 4 places in the world which could do the operation
(We rejected the Mayo Clinic and the other two candidates)
Then to founding a non-profit organization that puts out vital information on this rare disease to thousands of members throughout the USA and in dozens of countries around the world.
That looked impossible also back when Mary was reading medical research papers in a library.
But it is now accomplished and saving lives and growing every day.
The impediments facing you now will similarly yield to determined and purposeful action.
We already have the diagnosis and we have selected [treatment], the best and most proven treatment program n the world.
We will build success one day at a time by following this program together.
When it is clear that we are winning, the crowd will gather, many of them saying how they knew all along we would win.
We of course will welcome them.
We will overcome all obstacles in our path; working around them; or going over them; or through them.
(Alert obstacles will get out of our way)
Tom O’Connor
MaryO, pituitary success story
(Cushings/Success Stories)
... the Ladies Home Journal magazine which said "If you have these symptoms...ask your doctor about Cushing's". After that, I started reading everything I could on Cushing's and asking my doctors. Due ...
Tuesday, February 1, 2011
We Can Do It!
Adapted from an email from Tom O'Connor to a third party:
We can do it. We are facing some obstacles but we will chart our way through the dangerous terrain.
And we will... help you build a happier life.
The links below take you to my wife Mary O’Connor’s story.
Mary went from working alone researching a rare disease in a library (pre-Internet)
To diagnosing the illness herself
To finally finding a doctor who agreed with her
(After seeing a dozen or so who did not and who prescribed measures that would have failed and led to her death)
Then to a successful operation at NIH, one of 4 places in the world which could do the operation
(We rejected the Mayo Clinic and the other two candidates)
Then to founding a non-profit organization that puts out vital information on this rare disease to thousands of members throughout the USA and in dozens of countries around the world.
That looked impossible also back when Mary was reading medical research papers in a library.
But it is now accomplished and saving lives and growing every day.
The impediments facing you now will similarly yield to determined and purposeful action.
We already have the diagnosis and we have selected [treatment], the best and most proven treatment program n the world.
We will build success one day at a time by following this program together.
When it is clear that we are winning, the crowd will gather, many of them saying how they knew all along we would win.
We of course will welcome them.
We will overcome all obstacles in our path; working around them; or going over them; or through them.
(Alert obstacles will get out of our way)
Tom O’Connor
MaryO, pituitary success story
(Cushings/Success Stories)
... the Ladies Home Journal magazine which said "If you have these symptoms...ask your doctor about Cushing's". After that, I started reading everything I could on Cushing's and asking my doctors. Due ...
Wednesday, January 26, 2011
Diagnosed for obesity surgery in the US, 35 year Old American Lady weighing 136 kg was correctly detected of brain tumor
In the unique case which will strengthen the confidence of the World in the abilities of Indian doctors, team of specialist Fortis Hospitals Mulund correctly diagnosed and treated a 35 year old US national Ms Michelle Hardin of brain tumor. The US doctors had earlier diagnosed the condition as a case of obesity and recommended Gastric Bypass Surgery.
click to learn more
In the last few years Ms Hardin’s weight increased from 190 pounds to 300 pounds (86 kg to 136 kg). She also suffered from diabetes and hypertension. “I tried various diet control measures but to no avail. Also I had excessive thirst and would drink almost 8 liter of liquid daily and would feel always hungry. My obesity caused breathing difficulty (sleep apnea) and for which I used a special machine (CPAP Machine) to keep oxygen under pressure. Seven months back I took an expert opinion in US, where I was asked to undergo Gastric Bypass Surgery (GBS) to treat obesity. Since GBS was very expensive in US, I thought of undergoing the treatment in India.” Ms Hardin
Ms Hardin decided to visit Fortis Hospital to consult Dr Ramen Goel who has a vast experience of performing thousands of advanced laparoscopic surgeries including bariatric surgeries.
“Ms Hardin visited us with the known fact that she had to undergo Bariatric surgery through Gastric Bypass method. Detailed investigations at the hospital however revealed that she actually had a Pituitary Tumor on the right side of the pituitary gland of about 1cm in diameter. The weight gained was actually because of this pituitary tumour and not because of any case of obesity. I referred her to Dr Milind Vaidya, Consultant Neurosurgeon who has an expertise to remove the tumour through minimally invasive procedure.” said Dr Ramen Goel.
Dr. Milind Vaidya, Consultant Neurosurgeon, Fortis Hospitals Mulund said, “The tumor, situated in pituitary gland at the base of the brain, triggered excessive production of cortisol hormone by the adrenal glands leading to complications like uncontrolled diabetes, hypertension and weight gain. We treated her by transnasal- transsphenoidal excision of the pituitary tumor (a minimally invasive procedure) on 14th Jan 2011.”
Dr Vaidya used an endoscope & microscope to reach the tumour through her nostrils. He used both the nasal openings to reach the tumour to avoid incision or scar. He took special care to remove every bit of the tumour, to achieve cure and preserve the normal pituitary gland.
Ms Hardin had an uneventful excision of the right sided tumor and the normal pituitary on the left side was left untouched. Her nasal pack has been removed and she is doing well post-operation, with diabetes & hypertension under good control.
“I was shocked to learn that I suffered from tumour. I thank the doctors of Fortis Hospital. Had there been no timely intervention from them I wouldn’t know what would have happened to my life. Post operative my thirst & appetite have reduced markedly to normal levels. Doctor assured that my weight will be restored to normalcy gradually.” Ms Hardin.
According to Dr Vaidya, “Ms Hardin’s life is today safe and secure only because of timely detection. Had we continued the treatment of GBS or had we wrongly diagnosed the case, her condition could have been critical. Hence timely detection and right expertise is very crucial. This case is a testimony to the quality and credibility of Indian Healthcare expertise.”
Today India is considered as the best treatment destination by foreign patients as they can avail the finest medical facilities at affordable rates. Fortis has partnered with Indushealth in the US who has played a significant role in helping many such international medical travelers avail quality healthcare services at Fortis.
Bilateral adrenocortical carcinoma in a patient with multiple endocrine neoplasia type 1 (MEN1) and a novel mutation in the MEN1 gene
The incidence of adrenal involvement in MEN1 syndrome has been reported between 9 and 45%, while the incidence of adrenocortical carcinoma (ACC) in MEN1 patients has been reported between 2.6 and 6%. In the literature data only unilateral development of ACCs in MEN1 patients has been reported.
We report a 31 years-old female MEN1-patient, in whom hyperplasia of the parathyroid glands, prolactinoma, non functioning pancreatic endocrine carcinoma and functioning bilateral adrenal carcinomas were diagnosed. Interestingly, a not previously described in the literature data, novel germline mutation (p.E45V) in exon 2 of MEN1 gene, was detected.
The association of exon 2 mutation of the MEN1 gene with bilateral adrenal carcinomas in MEN1 syndrome, should be further investigated.
Author: John Griniatsos, Nikoletta Dimitriou, Athanassios Zilos, Stavroula Sakellariou, Konstantinos Evangelou, Smaragda Kamakari, Penelope Korkolopoulou, Gregory Kaltsas
Credits/Source: World Journal of Surgical Oncology 2011, 9:6
Copyright by the authors listed above - made available via BioMedCentral (Open Access). Please make sure to read our disclaimer prior to contacting 7thSpace Interactive. To contact our editors, visit our online helpdesk. If you wish submit your own press release, click here.
Monday, January 24, 2011
It's Literally Impossible To Have Cushings
This video was made by Tofu on the message boards. She wrote: "Maxhirez had made a funny movie showing a doctor/patient interaction. So I stole his...er...was inspired by his idea and made my own movie. These are the fruits of my insomnia tonight. Hope you enjoy!"
Endocrinologists sometimes have a hard time diagnosing cushing's disease. Here is a scene between one concerned patient and her endocrinologists.
~~~
MaryO'Note: I found this to be so true. It's very nearly like many of the conversations I have had over the years with far too many doctors.
Read other comments or add your own to the original thread here.
Sunday, January 23, 2011
Efficacy of Cabergoline in Uncured (Persistent or Recurrent) Cushing Disease After Pituitary Surgical Treatment with or without Radiotherapy
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PDF (780.1 KB)Authors
Anurag R. Lila, MD1, Raju A. Gopal, MD, DM1, Shrikrishna V. Acharya, MD, DM1, Joe George, MD, DM1, Vijaya Sarathi, MD, DM1, Tushar Bandgar, MD, DM1, Padma S. Menon, MD1, Nalini S. Shah, MD, DM1
1Department of Endocrinology, Seth Gordhandas Sunderdas Medical College, King Edward Memorial Hospital, Mumbai, India
Abstract
Objective: To evaluate the efficacy of cabergoline therapy in patients with Cushing disease who remained uncured (had persistent or recurrent disease) after a pituitary surgical procedure with or without radiotherapy.
Methods: We undertook a prospective, open-label, single-arm study, with short-term (5 months) and longterm (1 year) evaluations. In 20 patients with uncured Cushing disease, treatment was initiated with cabergoline at a dosage of 1 mg/wk, with a monthly increment of 1 mg, until midnight serum cortisol (MNSC) or low-dose dexamethasone suppression serum cortisol (LDSC) (or both) normalized or a maximal dosage of 5 mg/wk was reached.
Results: Overall, 5 of 18 patients (28%) responded in terms of LDSC or MNSC (or both) at a mean dosage of 3.6 mg/wk (range, 2 to 5). When the response was defined with use of either LDSC or MNSC level as an isolated criterion, it was achieved in 4 of 16 patients (25%) and 3 of 18 patients (17%), respectively. Four patients were treated for 1 year, and the response was persistent in 2 and 3 patients on the basis of MNSC and LDSC levels, respectively. Lower baseline serum cortisol (basal, MNSC, and LDSC) values were predictive of a therapeutic response.
Conclusion: Cabergoline was an effective therapy in 28%, 25%, and 17% of patients with uncured Cushing disease in terms of LDSC or MNSC (or both), LDSC alone, and MNSC alone, respectively. Further studies are needed to address the persistence of the drug response and the effects on the dynamics of the hypothalamic-pituitary-adrenal axis.
From http://www.symposier.com/external_content/17322/http:/aace.metapress.com/content/782k06rg68167149/?p=a5d447c72d104d68ae77bc8c47bd9f12&pi=6
Updated NIH Clinical Trials of interest to Cushing's patients
- A Study to Confirm Recurrent or Persistent Cushing's Syndrome in Patients With Signs or Symptoms of Hypercortisolemia
- Extension Study to Assess the Safety and Efficacy of Pasireotide in Patients With Cushing's Disease
- Prospective, Open-Label, Multicenter, International Study of Mifepristone for Symptomatic Treatment of Cushing's Syndrome Caused by Ectopic Adrenal Corticotrophin Hormone (ACTH) Secretion
- A Study of the Efficacy and Safety of CORLUX in the Treatment of Endogenous Cushing's Syndrome
- Diagnostic Performance of Screening Tests for Cushing's Syndrome
- Long-term Cardiovascular Risk in Cured Cushing's Patients
- Long Term Post Operative Follow-Up of Cushing Syndrome
- Jugular Vein Sampling for Hormone Levels for the Diagnosis of Cushing Syndrome
- New Imaging Techniques in the Evaluation of Patients With Ectopic Cushing Syndrome
- An Extension Study of CORLUX in the Treatment of Endogenous Cushing's Syndrome
- Study of Hypercortisolism in Cushing's Syndrome and Stress-Induced Pseudo-Cushing's Syndrome
- Preoperative Bexarotene Treatment for Cushing's Disease
- Glucocorticoid Receptor Antagonism in Subclinical Cushings
- Safety and Efficacy of Different Dose Levels of Pasireotide in Patients With de Novo, Persistent or Recurrent Cushing's Disease
- Adrenalectomy Versus Follow-up in Patients With Subclinical Cushings Syndrome
- Insulin Sensitivity and Substrate Metabolism in Patients With Cushing's Syndrome
- A Study to Assess SOM230 in Patients With Pituitary Cushing's Disease
- Study of Cushing's Syndrome Not Related to ACTH Production
- Study of Depression, Peptides, and Steroids in Cushing's Syndrome
- Hippocampal Complex Volume and Memory Dysfunction in Cushing's Syndrome
Thursday, January 20, 2011
Do You Have a Favorite Health/Medical App?
I don't have a Droid so most of my info will be about iPhone/iPad apps. Please feel free to add any apps you might like and tell us a bit about them. Thanks!
Part one was a blog post here. That page includes comments and suggestions from readers.
National Library of Medicine Launches Mobile MedlinePlus to Meet the Health Information Needs of an On-the-Go Public
Wondering what the side effects are for your new prescription? Go to Mobile MedlinePlus (http://m.medlineplus.gov) while you're waiting for the pharmacist to fill your order!
Or, instantly look up the symptoms of H1N1 flu if you're at the supermarket and your child's school calls you to tell you he doesn't feel well.
The National Library of Medicine's Mobile Medline Plus builds on the NLM's MedlinePlus Internet service, which provides authoritative consumer health information to over 10 million visitors per month. These visitors access MedlinePlus (http://medlineplus.gov) from throughout the United States as well many other countries, and use desktop computers, laptops and even mobile devices to get there.
The mobile Internet audience is large and growing fast, almost doubling from February 2007 to February 2009. Some experts predict that within the next five years, more people will connect to the Internet via mobile devices than via desktop or laptop computers. People use their mobile devices to accomplish a variety of tasks, including finding health information. With this in mind, NLM developed the mobile version of MedlinePlus to bring high-quality health information to users on the go.
"We know that a huge number of people are seeking good health information on the Web, noted NLM Director Dr. Donald A.B. Lindberg. What better way to reach out to them than by offering this new mobile service, which delivers trustworthy, consumer-friendly information instantly, anywhere?"
Mobile MedlinePlus is available in English and Spanish (http://m.medlineplus.gov/spanish) and includes a subset of content from the full Web site. It includes summaries for over 800 diseases, wellness topics, the latest health news, an illustrated medical encyclopedia, and information on prescription and over-the-counter medications.
For instance, you could visit the "Talking With Your Doctor" page on Mobile MedlinePlus to learn how to get the most out of your doctor’s visit.
Mobile MedlinePlus can also help you when you're trying to choose an over-the-counter cold medicine at the drug store.
And if you're traveling abroad, you can use Mobile MedlinePlus to learn about safe drinking water.
Mobile MedlinePlus puts reliable health information at your fingertips.
*High resolution screen shot of Mobile MedlinePlus available upon request.
The National Library of Medicine is part of the National Institutes of Health, an agency of the U.S. Department of Health and Human Services. It is the nation's largest medical library.
The National Institutes of Health (NIH) — The Nation's Medical Research Agency — includes 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 it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
From http://www.nih.gov/news/health/jan2010/nlm-22.htm?utm_source=twitterfeed&utm_medium=twitter
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Massachusetts General Hospital Launches iPhone App to Locate Emergency Rooms
FindER Connects Users to the Most Complete Database of ERs in the U.S. BOSTON—Researchers at Massachusetts General Hospital’s (MGH) Emergency Medicine Network (EMNet) announced today the launch of EMNet findER™, a free iPhone application designed to help users locate the closest emergency room to their current location, as well as provide directions and additional information with a touch of the screen. FindER uses the iPhone’s global positioning system to quickly direct patients to emergency rooms anywhere within the United States. “FindER is designed to provide key information to people experiencing health emergencies,” says Carlos A. Camargo MD, of MGH’s Department of Emergency Medicine and EMNet director. “FindER uses information from EMNet’s own database of emergency departments, which is the most complete and accurate in the nation.” Along with directions and general information, findER is designed for quick phone calls to both the care-center itself and in cases where necessary, 911 emergency services. “EMNet researchers maintain a database of nearly 5,000 emergency rooms in the United States. Unlike a simple Google search where the results may include many emergency centers that have closed or moved, or even veterinary hospitals, findER’s results are based on an aggregation of emergency room listings from multiple sources that have been confirmed by researchers at EMNet,” says Camargo. “FindER is designed to help patients get to emergency rooms in the shortest amount of time.”FindER is ideal for travelers, especially those suffering chronic medical conditions, or those traveling with friends or relatives with health problems. FindERis available now as a free download in the iTunes app store. Simply click this link or search "EMNet findER," to download. For a short demonstration video, users can visit YouTube.
From http://www.massgeneral.org/about/pressrelease.aspx?id=1248Just as info - the iTunes store said that there was nothing called FindER when I did a search. I found it only by typing EMNet findER. I have the app - looks great - and I hope I never need it again!
~~~~
I just found a new iPhone app today which looks pretty good. You can add family members and send the info to another phone so everyone has the info they need. It's only $.99 in the iTunes store:
It's called Capzule PHR and the website is http://capzule.com/phr/ with help files at http://capzule.com/phr/phrhowto.html There's a free version to try called Capzule PHR Free Features * Push Notification to alert appointments* Data Visualization via Interactive Timeline
* Edit records and upload files from Desktop/Laptop
* Record conditions and allergies
* Store doctor appointments
* Enter medications
* Email summary and graphs
* Print or download summary from Desktop/Laptop
* Maintain immunization records
* Enter vitals in Metric or Standard units
* Analyze line graphs of vitals and lab results
* Keep family, social, and medical history together
* Create custom health screening templates
* Enter notes, upload results and files
* Manage physician and insurance information
* Reset password when password is lost
* Categorize Notes and Attachments
* Email flowsheet data in CSV format along with graphs
* Email Summary with graphs embedded
* Backup and Restore from Desktop/Laptop
* Export CSV data from Desktop/Laptop
* Email documents
* Add files from other Apps (iOS 3.2+)
* Summary Reporting Filter
Saturday, January 15, 2011
Pediatric Endo in California?
Can anyone help with this? on the Cushing's Facebook Group Danielle asks: "does anyone know of any Doctors names who specialize in Pediatric Cushing's in the California area? thx"
On the topic of endos, we can always use info for the Helpful Doctors lists. If you have a doctor you'd like to add, please share his/her info here. Thanks! As always, advertising is not accepted. Doctors (or doctor's staff members) may not submit his/her own information.
Friday, January 14, 2011
Something New...again
Whenever there's a new service, or site, I like to try it out to reach as many people with Cushing's as possible. I know that all Cushies aren't on Facebook, or Twitter or even on the Cushing's Help message boards. So, I'm giving this a whirl :)
The Basics:
Cushing's syndrome, also known as hypercortisolism or hyperadrenocorticism, is an endocrine disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol (in the blood) from a variety of causes, including primary pituitary adenoma (known as Cushing's disease), primary adrenal hyperplasia or neoplasia, ectopic ACTH production (e.g., from a small cell lung cancer), and iatrogenic (steroid use). It is relatively rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year. Cushing's was discovered by American physician, surgeon and endocrinologist Harvey Cushing (1869-1939) and reported by him in 1932.
Normally, cortisol is released from the adrenal glands in response to ACTH being released from the pituitary gland. Both Cushing's syndrome and Cushing's disease are characterized by elevated levels of cortisol in the blood, but the cause of elevated cortisol differs between the two.
- Cushing's disease specifically refers to a tumor in the pituitary gland that stimulates excessive release of cortisol from the adrenal glands by releasing large amounts of ACTH.
- In Cushing's syndrome, ACTH levels will normally drop due to negative feedback from the high levels of cortisol. All forms of Cushing's are correctly called Cushing's Syndrome.
Cushing's syndrome occurs when the body's tissues are exposed to excessive levels of cortisol for long periods of time. Cortisol helps maintain blood pressure and cardiovascular function and is responsible for helping the body respond to stress. Many people suffer the symptoms of Cushing's syndrome because they take steroids such as prednisone for asthma, rheumatoid arthritis, lupus and other inflammatory diseases, or for immunosuppression after transplantation. Prednisone is well-known for a "bloating" look that it gives people who take it.
Others develop Cushing's syndrome because of overproduction of cortisol by the body due to a tumor on the pituitary (usually an adenoma or benign tumor of the pituitary glands) or adrenal glands, or elsewhere in the body Adrenal cancers, or other adrenal abnormalities may be the cause of Cushing’s Syndrome as well.
People who have been diagnosed with depression, alcoholism, malnutrition and panic attacks tend to have higher cortisol levels as well. These types of Cushing's may be called Pseudo-Cushing's.
The Signs and Symptoms of Cushing's
The message boards are very active and we have weekly online chats, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum in honor of Dr. Harvey Cushing's birthday April 8, phone support and much more. Whenever one of the members of the boards gets into NIH, we try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and much more.
Tuesday, January 11, 2011
Coping Strategies in Patients after Treatment for Functioning or Nonfunctioning Pituitary Adenomas
The Journal of Clinical Endocrinology & Metabolism , doi:10.1210/jc.2010-2490
Jitske Tiemensma*, Adrian A. Kaptein, Alberto M. Pereira, Johannes W. A. Smit, Johannes A. Romijn, and Nienke R. Biermasz
Departments of Endocrinology and Metabolism (J.T., A.M.P., J.W.A.S., J.A.R., N.R.B.) and Medical Psychology (A.A.K.), Leiden University Medical Center, 2300 RC Leiden, The Netherlands
* To whom correspondence should be addressed. E-mail: J.Tiemensma@lumc.nl.
Context and Objective: Coping strategies may affect quality of life, which is decreased in patients after treatment for Cushing's disease, acromegaly, or nonfunctioning pituitary macroadenomas (NFMA). We aimed to explore coping strategies in these patients because this has never been done before.
Design: We conducted a cross-sectional study.
Subjects: We included patients treated for Cushing's disease (n = 42), for acromegaly (n = 80), and for NFMA (n = 61). These patients were compared with three reference populations: an a-select sample from the Dutch population (n = 712), patients with chronic pain (n = 59), and patients receiving primary care psychology services (n = 525). Furthermore, the three patient groups were compared with each other. Coping strategies were assessed by the Utrecht Coping List.
Results: Compared with the a-select sample, patients with pituitary adenomas reported less active coping (P < 0.0001), sought less social support (P < 0.0001), and reported more avoidant coping (P = 0.008). In contrast, patients treated for pituitary adenomas reported somewhat better coping strategies than patients with chronic pain and those with psychological disease. When patients with different pituitary adenomas were compared, patients treated for Cushing's disease sought more social support than patients treated for NFMA (P = 0.035).
Conclusions: Patients treated for pituitary adenomas display different and less effective coping strategies compared with healthy controls. A targeted intervention might help to stimulate patients to use a more active coping strategy and to seek social support instead of an avoiding coping strategy. This might, in turn, improve their quality of life.
From http://jcem.endojournals.org/cgi/content/abstract/jc.2010-2490v1
Saturday, January 8, 2011
Symptoms of Addison’s disease
How to tell if your patient is having an acute crisis.
It’s 8:30 on a Tuesday morning, and your crew is responding to an unresponsive 18-year-old male patient. You and your partner are well-seasoned paramedics who have responded to thousands of calls in your careers. Your mobile data computer (MDC) provides further information from the 9-1-1-center that states, “patient is a known diabetic and the patient’s father is attempting to administer oral glucose.”
On arrival, you’re greeted by the patient’s stepmother. She says, “I think it’s his blood sugar.” You’re directed to the third floor of an old farmhouse. After climbing two sets of stairs, you find a male patient partially clothed, lying on the floor and moaning.
As you approach, his father states, “I tried to give him his oral glucose, but I don’t know how much I got him.”
The patient’s room is disheveled with no obvious threats to EMS, and it appears as though the patient may have been out of control or trashing around prior to your arrival. He continues to moan incomprehensibly.
When approached, he moans louder and becomes agitated. You also note that he’s partially covered in feces. After numerous attempts of trying to perform an assessment, the patient becomes more agitated, and you request assistance from the police department.
Patient Assessment
Although no immediate threats are noted, you maintain a safe distance from the patient until the police arrive. His father is able to calm him, so you can make contact. However, the patient still doesn’t communicate with you when questioned during your assessment, and he continues to moan.
The patient can be non-forcefully rolled over onto his back, and you’re able to obtain a baseline set of vital signs, including blood glucose level. The initial set of vital signs are as follows: heart rate is 86, blood pressure is 88/60, respiratory rate is 16, and non-labored, blood glucose level is 113 mg/dL.
His skin is warm, slightly pale and dry, and you note no visible trauma, bleeding or other abnormalities. While questioning the father further, he reports that his son may have overdosed on something because he found a blue liquid-like substance in a coffee cup next to the patient’s bed. The father says he’s unaware of the patient having any history of alcohol or substance abuse, although he believes the patient may occasionally use marijuana and does smoke cigarettes.
On further assessment, you notice a tattoo on the patient’s left forearm. In addition to the patient’s name, the tattoo reads “insulin dependent diabetic, Addison’s disease, no allergies.”
The crew comments about the tattoo having his medical information, and the father reports that because the patient has had many problems with his diabetes while out in public, he feels it was appropriate that the information be tattooed on his son’s arm.
Transport
The patient again becomes agitated and aggressive, attempting to bite your partner. With the assistance of the police department, he’s secured in a Reeves stretcher, and you begin to carry him down the stairs. He continues to thrash around, almost uncontrollably, and he almost slides out of the stretcher several times.
Your protocols don’t allow the use of Ativan without verbal orders from a physician, so you make contact with the medical command physician at the hospital to obtain orders to administer it in an attempt to chemically subdue the patient. A report is relayed to the medical command physician, and he authorizes your request to administer 1 milligram of Ativan and orders an additional 1 milligram if needed.
The patient continues to be uncontrollable, and you have two failed attempts at IV access because of the patient’s thrashing around.
You then attempt to administer the Ativan intranasally, and the patient fights you. After several attempts, you decide to switch to the intramuscular route and are successful. After a minute or so, the patient calms down and is resting on the stretcher. At the patient’s father’s request, you transport the patient to a hospital that isn’t the closest.
Prior to departure, the patient’s father says he’s only seen his son act like this one other time he can remember, which was when he was diagnosed with Addison’s. During transport, your continued assessment reveals no major trauma, other than some abrasions on the patient’s shoulders and knees. You also note that he’s extremely thin, but he appears to be healthy and has a bronze hue to his skin.
The patient remains non-verbal and doesn’t respond appropriately when questioned. He appears to drift in and out of consciousness, but he maintains a patent airway.
The patients’ vital signs are reassessed with no changes noted, and an ECG is obtained with no abnormalities or ectopy present. The rhythm is sinus tachycardia at a rate of 118 beats per minute. You repeat a blood glucose test, which reveals a reading of 126mg/dL.
You’re able to successfully establish IV access with an 18-gauge needle and administer a 250 mL bolus of normal saline solution followed by titration to KVO. You also attempt to administer oxygen via numerous devices, but he fights off all efforts.
Arrival
On arrival at the emergency department (ED), you ask your partner what he knows about Addison’s disease. Neither of you knows anything more than it causes renal insufficiency and that most people who have Addison’s also suffer from insulin-dependent diabetes. Your differential diagnosis is still leading to you think this patient may be suffering from some type of overdose or adverse reaction to an unknown substance.
You transfer the patient to the awaiting nursing staff and attending ED physician. After reporting your findings, assessment, scene and patient presentation, while you’re cleaning up your equipment, the ED physician comes over and asks whether you know that you saved the patient’s life. You and your partner look at each other
in amazement.
You ask him what’s wrong with the patient, and he replies that it’s an acute Addisonian crisis, explaining that the patient was at a critical level and could have potentially suffered irreversible effects. He said it would be several hours before they knew the outcome and that says he’s only seen one case like this in his 17 years of practicing medicine.
You wish the family well and clear the hospital. As you return to the station, you and your partner discuss the dynamics of the call.
Although you are both seasoned paramedics with lots of experience, you agree that you’ve never seen anything like this.
Addison’s Disease
After returning to the station, you contact your medical director and ask for some insight into the disease, its process and how to treat and recognize it should you cross paths with it again. He tells you that Addison’s disease is a rare disorder of the endocrine system caused by a lack of the steroid hormones that are produced by the adrenal glands.
Treatment is exactly what you did: monitor the patient, keep them safe and rapidly transport them to a hospital for definitive care. The disease initially presents subtly and without any real prodrome or awareness until the majority of symptoms present.
The most common symptoms include fatigue, lightheadedness, headache, muscle weakness and pain, fever, weight loss, nausea, vomiting, diarrhea, excessive sweating, sudden changes in mood and personality, excessive craving for salty foods and a bronzed or tanned skin color. Large populations of people with Addison’s disease also suffer from Type I diabetes and require insulin injections.
An acute Addisonian crisis presents when someone previously diagnosed with Addison’s suffers from an infection or traumatic injury or if they suddenly stop taking their glucocorticoids. This may also be how the onset of Addison’s is diagnosed for the first time in some patients.
Symptoms of an acute crisis include severe vomiting and diarrhea resulting in dehydration, hypotension, syncopal episodes leading to unconsciousness, confusion, psychosis, slurred speech, agitation, combativeness, hypoglycemia and seizures.
If untreated or improperly treated, an acute Addisonian crisis can be fatal. These patients require prehospital administration of steroids, such as Hydrocortisone, Prednisone, or Solu-Cortef to replace the missing cortisol.
When you identify someone with a past history of Addison’s who is presenting as this patient did, it’s paramount to protect the patient and rapidly transport them to a hospital for treatment. Remembering the signs and symptoms of Addison’s may make the difference between life and death for these patients especially when they’re in an acute crisis state.
This patient was admitted to the local hospital, was subsequently transferred to a pediatric specialty hospital and was discharged after two weeks.
He had been complaining of cold and flu-like symptoms for a few days prior to our encounter, which may have triggered the acute crisis. JEMS
This article originally appeared in January 2011 JEMS as
“Crisis Averted: Recognize the symptoms of Addison’s disease before they escalate.”
From http://www.jems.com/article/addison-s-disease/do-you-think-i-should-send-my
Friday, January 7, 2011
Congratulations to Donna Sellers, Founder of John’s Foundation for Cushing’s Awareness
Cambridge Who’s Who® member Donna Sellers is the founder of John’s Foundation for Cushing’s Awareness (JFCA, Inc.), a nonprofit foundation that raises awareness about Cushing’s syndrome in children. Ms. Sellers became involved in promoting Cushing’s awareness after her son, John, experienced a series of misdiagnoses before pediatricians determined that he had Cushing’s syndrome — a condition that occurs rarely in children. Through her work with JFCA, Inc., Donna Sellers empowers parents to push pediatricians to accurately diagnose children with Cushing’s syndrome by raising awareness of the disease.
Cushing’s syndrome occurs when the body accumulates too much cortisol, which is a hormone produced in the adrenal glands that regulates blood pressure and metabolism. When the body produces too much cortisol, significant changes occur in the body’s tissues and organs. Children diagnosed with the disease experience rapid weight gain accompanied by a decrease in growth rate (linear height). Other problems that may occur include: facial roundness; excess hair growth on the cheeks, arms and legs; development of pubic hair at a younger age than usual; irregular or absent menstrual periods; easy bruising; and, high blood pressure1. An estimated 10 to 15 of every one million people are affected each year, and only about 10 percent of new cases occur in children2.
Six years ago, Ms. Sellers took her son, who was five years old at the time, to his pediatrician because she noticed he weighed substantially more than other children his age. Within weeks after the doctor’s visit, John experienced a rapid weight gain and developed facial and pubic hair that normally develops in children between 10 to 12 years old. After notifying John’s pediatrician of the drastic changes, he underwent additional testing. Through a bone age scan, doctors found that John had the bones of an 8-year-old. They also found a tumor on his left adrenal gland that needed to be surgically removed. After the surgery, John was diagnosed with bipolar disorder, ADHD, OCD, borderline Asperger’s syndrome, and attachment disorder, among others, before his doctors were able to determine he had Cushing’s syndrome.
After enduring the experience of determining what was wrong with John physically, Donna Sellers decided to spread a message to physicians to encourage them to better recognize the symptoms of Cushing’s syndrome in children. She advocates for community education about Cushing’s, and provides support to families who are having their children tested for the condition. “I don’t want another family going through this alone,” Ms. Sellers noted. She continues to write articles about Cushing’s in local newspapers, and has reached out to government officials to sign proclamations for appropriate medical diagnoses in children.
Ms. Sellers home schools her son through the Georgia Cyber Academy, an online public school that offers Georgia students in grades K-12 an exceptional learning experience. The virtual school provides curriculum packages that include high-quality lessons with mastery-based assessments to ensure students achieve success at each and every grade level from elementary through high school. Georgia Cyber Academy accommodates gifted and special needs students who require a more rigorous or customized academic program, and students with health concerns that prevent them from learning in a traditional classroom setting.
To learn more about John’s Foundation for Cushing’s Awareness, or to receive information about Cushing’s syndrome, visit http://www.jfcainc.com.
1-2Keil, Meg (Winter, 2004) “Cushing’s Syndrome in Children” Retrieved November 5, 2010 from Cushing’s Support and Research Foundation website.
From http://cambridgewhoswhocares.wordpress.com/johns-foundation-for-cushings-awareness/
New National Drug Code for injective hydrocortisone (September 2010)
It has come to the attention of the PES (Pediatric Endocrine Society) that the National Drug Code (NDC) for injectable hydrocortisone (Solu-Cortef, Pfizer) has changed. Pharmacies use NDCs when ordering drugs from suppliers, thus if the wrong NDC is used, then the drug is mistakenly believed to be 'discontinued' or 'back-ordered'. Pharmacies may not be aware of the change in NDC and thus use outdated NDCs when ordering Solu-Cortef from suppliers. Some families of patients with adrenal insufficiency have reported an inability to obtain the drug from pharmacies despite assurances from Pfizer that the drug is still in production. Drug can be obtained if the correct NDC is used.
The new NDC numbers for Solu-Cortef are as follows:
Solu-Cortef 100 mg vial (without diluent) NDC 0009-0825-01
Solu-Cortef 100 mg vial as Act-o-vial (w/2mL diluent) NDC 0009-0011-03
Solu-Cortef 250 mg vial as Act-o-vial (w/2mL diluent) NDC 0009-0013-05
If your patients have difficulty obtaining Solu-Cortef, please inform the families and local pharmacies about these updated numbers so that it can be ordered correctly.
More drug information is available at:
http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=18255
Drug and Therapeutics Committee
Friday, December 31, 2010
Endoscopic endonasal approach for pituitary adenoma: surgical complications in 301 patients
Jackson A. Gondim, Joao Paulo C. Almeida, Lucas Alverne F. Albuquerque, Michele Schops, Erika Gomes, Tania Ferraz, Wladia Sobreira and Meissa T. Kretzmann
DOI: 10.1007/s11102-010-0280-1
Abstract
The authors investigate the complications of transnasal transsphenoidal endoscopic surgery in the treatment of 301 patients with pituitary adenomas. A retrospective analysis of complications in 301 patients submitted to transsphenoidal transnasal endoscopic surgery at the General Hospital of Fortaleza, Brazil between January 1998 and December 2009. The complications were divided in two groups: anatomical (oronasofacial, sphenoid sinus, intrasellar, suprasellar and parasellar) and endocrinological complications (anterior and posterior pituitary dysfunctions). We observed a total of 81 complications (26.9%) in our series. Anatomical complications occurred in 8.97% (27 cases): 8 CSF postoperative leaks (2.6%), 6 cases (1.9%) of delayed nasal bleeding, 5 cases (1.6%) of sphenoidal sinusitis, 3 cases (0.9%) of carotid artery lesion, 2 cases of meningitis (0.6%) and one case (0.3%) of each of the uncommon following complications: intrasella-suprasella hematoma, pontine hematoma and chiasmaplexy. Endocrinological complications occurred in 17.9% (54 cases): additional postoperative anterior lobe insufficiency in 35 cases (11.6%), and postoperative diabetes insipidus in 19 cases (6.3%). In our series, 3 cases of deaths (not directly related to the procedure) were also observed. Endoscopic transsphenoidal surgery represents an effective option for the treatment of patients with pituitary tumor. Complications still occur and must be reduced as much as possible. Successful endoscopic pituitary surgery requires extensive training in the use of an endoscope and careful planning of the surgery. Additional improvement can be expected with greater experience and new technical developments.
Keywords Pituitary - Adenoma - Transphenoidal - Endoscopy - Complications
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