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Excess mortality among people with endogenous Cushing syndrome (CS) has declined in the past 20 years yet remains three times higher than in the general population, new research finds.


Among more than 90,000 individuals with endogenous CS, the overall proportion of mortality ― defined as the ratio of the number of deaths from CS divided by the total number of CS patients ― was 0.05, and the standardized mortality rate was an "unacceptable" three times that of the general population, Padiporn Limumpornpetch, MD, reported on March 20 at ENDO 2021: The Endocrine Society Annual Meeting.


Excess deaths were higher among those with adrenal CS compared to those with Cushing disease. The most common causes of death among those with CS were cardiovascular diseases, cerebrovascular accident, infection, and malignancy, noted Limumpornpetch, of Songkla University, Hat Yai, Thailand, who is also a PhD student at the University of Leeds, Leeds, United Kingdom.


"While mortality has improved since 2000, it is still significantly compromised compared to the background population.... The causes of death highlight the need for aggressive management of cardiovascular risk, prevention of thromboembolism, infection control, and a normalized cortisol level," she said.


Asked to comment, Maria Fleseriu, MD, told Medscape Medical News that the new data show "we are making improvements in the care of patients with CS and thus outcomes, but we are not there yet.... This meta-analysis highlights the whole spectrum of acute and life-threatening complications in CS and their high prevalence, even before disease diagnosis and after successful surgery."


She noted that although she wasn't surprised by the overall results, "the improvement over time was indeed lower than I expected. However, interestingly here, the risk of mortality in adrenal Cushing was unexpectedly high despite patients with adrenal cancer being excluded."
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Updates on Treating Hypothyroidism
 
Dr. Theodore Friedman will be giving a webinar on Updates on Treating Hypothyroidism.
 
Topics to be discussed include:

New articles showing patients prefer desiccated thyroid


New thyroid hormone preparations


Update on desiccated thyroid recalls


New article on why TSH is less important than thyroid hormone measurements


What is the difference between desiccated thyroid and synthetic thyroid hormones?


Is rT3 important?


Sunday • April 25• 6 PM PDT
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Via Zoom Click here to join the meeting or
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OR
+16699006833,,4209687343#,,,,*111116# 
Slides will be available before the webinar and recording after the meeting at slides
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      Meeting ID: 420 968 7343 Passcode: 111116
Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button.    
For more information, email us at mail@goodhormonehealth.com

 


                                                                        
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I plan to do the Cushing's Awareness Challenge again. A past year info is here:  https://cushieblogger.com/2018/03/11/time-to-sign-up-for-the-cushings-awareness-challenge-2018/

The original page is getting very slow loading, so I've moved my own posts to this newer blog.

As always, anyone who wants to join me can share their blog URL with me and I'll add it to the links on the right side, so whenever a new post comes up, it will show up automatically.

If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and on Facebook at Cushings Help Organization, Inc.  If you have photos, and you give me permission, I'll add them to the Pinterest page for Cushing's Help.

The Cushing’s Awareness Challenge is almost upon us again!
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COVID-19 Risk With Adrenal Insufficiency

Alarming new data suggested that children with adrenal insufficiency were more than 23 times more likely to die from COVID-19 than kids without this condition (relative risk 23.68, P<0.0001). This equated to 11 deaths out of 1,328 children with adrenal insufficiency compared with 215 deaths out of 609,788 children without this condition (0.828% vs 0.035%).

These young patients with adrenal insufficiency also saw a much higher rate of sepsis (RR 21.68, P<0.0001) and endotracheal intubation with COVID-19 infection (RR 25.45, P<0.00001).

Data for the analysis were drawn from the international TriNetX database, which included patient records of children ages 18 and younger diagnosed with COVID-19 from 60 healthcare organizations in 31 different countries.

"It's really important that you take your hydrocortisone medications and start stress dosing as soon as you're sick," study author Manish Raisingani, MD, of the University of Arkansas for Medical Sciences and Arkansas Children's in Little Rock, explained during a press conference. "This will help prevent significant complications due to COVID-19 or any other infections. A lot of the complications that we see in kids with adrenal insufficiency are due to inadequate stress dosing of steroids."

And with kids starting to return back to in-person schooling, "parents should also be reeducated about using the emergency injections of hydrocortisone," Raisingani added. He noted that the COVID-19 complication rates were likely so high in this patient population because many had secondary adrenal insufficiency due to being on long-term, chronic steroids. Many also had comorbid respiratory illnesses, as well.
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Abstract
Background

Transsphenoidal surgery (TSS) to resect an adrenocorticotropic hormone (ACTH)-secreting pituitary adenoma is the first-line treatment for Cushing’s disease (CD), with increasing usage of endoscopic transsphenoidal (ETSS) technique. The aim of this study was to assess remission rates and postoperative complications following ETSS for CD.

Methods

A retrospective analysis of a prospective single-surgeon database of consecutive patients with CD who underwent ETSS between January 2012–February 2020. Post-operative remission was defined, according to Endocrine Society Guidelines, as a morning serum cortisol < 138 nmol/L within 7 days of surgery, with improvement in clinical features of hypercortisolism. A strict cut-off of < 50 nmol/L at day 3 post-op was also applied, to allow early identification of remission.

Results

A single surgeon (MJ) performed 43 ETSS in 39 patients. Pre-operative MRI localised an adenoma in 22 (56%) patients; 18 microadenoma and 4 macroadenoma (2 with cavernous sinus invasion). IPSS was carried out in 33 (85%) patients. The remission rates for initial surgery were 87% using standard criteria, 58% using the strict criteria (day 3 cortisol < 50 nmol/L). Three patients had an early repeat ETSS for persistent disease (day 3 cortisol 306-555 nmol/L). When the outcome of repeat early ETSS was included, the remission rate was 92% (36/39) overall. Remission rate was 94% (33/35) when patients with macroadenomas were excluded. There were no cases of CSF leakage, meningitis, vascular injury or visual deterioration. Transient and permanent diabetes insipidus occurred in 33 and 23% following first ETSS, respectively. There was one case of recurrence of CD during the follow-up period of 24 (4–79) months.

Conclusion

Endoscopic transsphenoidal surgery produces satisfactory remission rates for the primary treatment of CD, with higher remission rates for microadenomas. ...
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A large study of mortality in Cushing’s syndrome calculated a threefold higher mortality rate for these patients, with cerebrovascular and atherosclerotic vascular diseases and infection accounting for 50% of deaths, researchers reported.

“[We have seen] improvement in outcome since 2000, but mortality is still unacceptably high,” Padiporn Limumpornpetch, MD, an endocrinologist at Prince of Songkla University in Thailand and PhD student at the University of Leeds, U.K., told Healio during the ENDO annual meeting. “The mortality outcome has shown an unacceptable standardized mortality rate of 3:1, with poorer outcomes in patients with adrenal Cushing’s [and] active and larger tumors in Cushing’s disease.”

Atherosclerotic vascular disease was the top cause of death in Cushing's disease, with infection coming in as the second-highest cause of death. Data were derived from Limumpornpetch P. OR04-4. Presented at: ENDO annual meeting; March 20-23, 2021 (virtual meeting).

For a meta-analysis and meta-regression analysis of cause of death among patients with benign endogenous Cushing’s syndrome, Limumpornpetch and colleagues reviewed data published from 1952 to January 2021 from 92 study cohorts with 19,181 patients that reported mortality rates, including 66 studies that reported causes of death.

The researchers calculated the standardized mortality rate (SMR) for Cushing’s syndrome at 3 (95% CI, 2.3-3.9). For patients with adrenal Cushing’s syndrome, SMR was 3.3 (95% CI, 0.5-6.6) — higher than for those with Cushing’s disease, with an SMR of 2.8 (95% CI, 2.1-3.7). Rates were similar by sex and by type of adrenal tumor.

Deaths occurring within 30 days of surgery for Cushing’s syndrome fell to 3% after 2000 from 10% before that date (P < .005). ..
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Adrenal insufficiency increases the risk for severe outcomes, including death, 23-fold for children who contract COVID-19, according to a data analysis presented at the ENDO annual meeting.

“Adrenal insufficiency in pediatrics does increase risk of complications with COVID-19 infections,” Manish Gope Raisingani, MD, assistant professor in the department of pediatrics in the division of pediatric endocrinology at Arkansas Children's Hospital, University of Arkansas for Medical Sciences, told Healio. “The relative risk of complications is over 20 for sepsis, intubation and mortality, which is very significant.”

Source: Adobe Stock

Using the TriNetX tool and information on COVID-19 from 54 health care organizations, Raisingani and colleagues analyzed data from children (aged 0-18 years) with COVID-19; 846 had adrenal insufficiency and 252,211 did not. The mortality rate among children with adrenal insufficiency was 2.25% compared with 0.097% for those without, for a relative risk for death of 23.2 (P < .0001) for children with adrenal insufficiency and COVID-19. RRs for these children were 21.68 for endotracheal intubation and 25.45 for sepsis.

“Children with adrenal insufficiency should be very careful during the pandemic,” Raisingani said. “They should take their steroid medication properly. They should also be appropriately trained on stress steroids for infection, other significant events.”

From https://www.healio.com/news/endocrinology/20210321/severe-covid19-risks-greatly-increased-for-children-with-adrenal-insufficiency
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Here's your chance to make your voice heard on Growth Hormone Issues.

Anyone interested would sign up with Rare Patient Voice using the CushingsHelp referral Link. You would then get an email invite to the actual study.



 



 



Study Opportunity for Idiopathic Short Stature (ISS) Caregivers



This is a 30 min online survey and Compensation is $50



 



Please sign up at the link below for more information or to see if you qualify



https://rarepatientvoice.com/CushingsHelp/
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WASHINGTON--Endogenous Cushing's syndrome, a rare hormonal disorder, is associated with a threefold increase in death, primarily due to cardiovascular disease and infection, according to a study whose results will be presented at ENDO 2021, the Endocrine Society's annual meeting.

The research, according to the study authors, is the largest systematic review and meta-analysis to date of studies of endogenous (meaning "inside your body") Cushing's syndrome. Whereas Cushing's syndrome most often results from external factors--taking cortisol-like medications such as prednisone--the endogenous type occurs when the body overproduces the hormone cortisol, affecting multiple bodily systems.

Accurate data on the mortality and specific causes of death in people with endogenous Cushing's syndrome are lacking, said the study's lead author, Padiporn Limumpornpetch, M.D., an endocrinologist from Prince of Songkla University, Thailand and Ph.D. student at the University of Leeds in Leeds, U.K. The study analyzed death data from more than 19,000 patients in 92 studies published through January 2021.

"Our results found that death rates have fallen since 2000 but are still unacceptably high," Limumpornpetch said....
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John P H Wilding 1

PMID: 32061161

DOI: 10.1530/EJE-20-0099


Endocrine disorders such as Cushing's syndrome and hypothyroidism may cause weight gain and exacerbate metabolic dysfunction in obesity. Other forms of endocrine dysfunction, particularly gonadal dysfunction (predominantly testosterone deficiency in men and polycystic ovarian syndrome in women), and abnormalities of the hypothalamic-pituitary-adrenal axis, the growth hormone-IGF-1 system and vitamin D deficiency are common in obesity. As a result, endocrinologists may be referred people with obesity for endocrine testing and asked to consider treatment with various hormones. A recent systematic review and associated guidance from the European Society of Endocrinology provide a useful evidence summary and clear guidelines on endocrine testing and treatment in people with obesity. With the exception of screening for hypothyroidism, most endocrine testing is not recommended in the absence of clinical features of endocrine syndromes in obesity, and likewise hormone treatment is rarely needed. These guidelines should help reduce unnecessary endocrine testing in those referred for assessment of obesity and encourage clinicians to support patients with their attempts at weight loss, which if successful has a good chance of correcting any endocrine dysfunction.


From https://pubmed.ncbi.nlm.nih.gov/32061161/
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There is an absence of online information regarding the risks of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) nasopharyngeal swab (NPS) testing for patients with a history of sinus and/or pituitary surgery, according to a research letter published online March 4 in JAMA Otolaryngology-Head & Neck Surgery.

Noting that blind NPS testing poses a risk to patients with sinus pathology, Taylor Fish, from the University of Texas Health San Antonio, and colleagues examined online preoperative and postoperative patient information regarding the potential risks of SARS-CoV-2 NPS testing for individuals with a history of sinus or skull-base surgery. The top 100 sites for searches on “sinus surgery instructions” and “pituitary surgery instructions” were identified. The authors also noted the presence of any of the following terms on the webpages: COVID-19, SARS-CoV-2, coronavirus, or nasopharyngeal swab.

Searches for sinus surgery instructions and pituitary surgery instructions returned 6,600,000 and 1,200,000 results, respectively. The researchers identified 79 websites that displayed the date of the last update, and nine of these had been updated since the declaration of COVID-19 as an international health emergency on Jan. 30, 2020. None of the top 200 websites (53 academic, 93 private practice, and 54 other sites) contained warnings for high-risk patients or information pertaining to SARS-CoV-2 NPS testing.

“Otolaryngologists should inform at-risk patients about blind NPS testing and alternative diagnostic methods,” the authors write. “Health care professionals ordering or administering testing must prescreen patients with a history of sinus and skull-base surgery prior to NPS testing and use alternative testing.”

One author disclosed financial ties to the medical device industry.

Abstract/Full Text

From https://www.physiciansweekly.com/nasal-swab-test-for-covid-19-risky-for-sinus-surgery-patients/
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This sounds a lot like what we have been doing for the last 20 years...

 

HRA Pharma Rare Diseases, an affiliate of global consumer healthcare company HRA Pharma, has announced it is funding an online platform containing information and news on Cushing’s Syndrome.

The ‘Cushing’s Hub’, developed by Springer Healthcare Education, is set to make all information on the rare condition available in one place for medical professionals to access.

Cushing’s Syndrome affects less than one in 10,000 people in the EU, and is categorised as a rare and severe condition caused by prolonged high levels of cortisol in the blood.

The new hub is managed by an independent editorial board consisting of three international Cushing’s Syndrome experts - Professor Frédéric Castinetti from France, Dr Niki Karavitaki from the UK and Associate Professor Dr Greisa Vila from Austria.

According to HRA Pharma Rare Diseases, the ‘Cushing’s Hub’ is the first online platform dedicated to all aspects of the rare condition.

“As a company which is dedicated to improving the lives of those with rare diseases, we felt it was crucial to support the development of a platform that can help healthcare professionals in the diagnosis, management and follow up of Cushing’s Syndrome. We are confident the platform will help improve the lives of many,” said Evelina Paberžė, COO of HRA Pharma Rare Diseases.
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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,
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From board member @sharm - 

 



Please Join Us to Celebrate 20 Years-Pituitary Patient Support Group. Saturday April 10, 2021: 9:00am-11:00am (PST) (Scroll below for Zoom meeting links)



 



We invite you to join the conversation with our experts: Pejman Cohan, neuro-endocrinologist & Daniel Kelly, neurosurgery. Email me or leave your questions in the chat below. We will answer as many questions as time allows.



 



We can't wait to see you on Zoom! T



 



hank you, Sharmyn McGraw, patient advocate, community outreach. pituitarybuddy@hotmail.com



Meeting ID: 849 6356 9824



Passcode: 596170



Zoom: https:/zoom.us/join



One tap mobile



+16699006833,,84963569824#,,,,*596170# US (San Jose)



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Dial by your location



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Meeting ID: 849 6356 9824



Passcode: 596170



Find your local number: https://us02web.zoom.us/u/kdgrvRLBP7
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Patients with adrenal insufficiency may have higher rates of cardiovascular events due to the presence of cardiovascular comorbidities, shows a study published in The Journal of Clinical Endocrinology and Metabolism.

Led by Kanchana Ngaosuwan, MD, PhD, of Imperial College London, UK, the authors of this population-based matched cohort study also found that cerebrovascular events were independently increased in patients with secondary adrenal insufficiency, particularly in those treated with irradiation therapy. Cardiovascular mortality, specifically from ischemic heart disease, was higher regardless of having secondary adrenal insufficiency or primary adrenal insufficiency (Addison’s disease).

Adrenal insufficiency occurs when the adrenal glands fail to produce adequate glucocorticoids. In Addison’s disease, it arises from the adrenal glands, but in secondary adrenal insufficiency, it occurs as a result of a pituitary or hypothalamic condition. Glucocorticoid replacement therapy is usually the first line of defense, but the treatment is associated with a number of adverse events, such as cardiovascular disease. Ischemic heart disease is the leading cause of death for patients with Addison’s disease.
From https://www.endocrinologyadvisor.com/home/topics/cardiovascular-and-metabolic-disorders/adrenal-insufficiency-associated-with-increased-cvd-and-cerebrovascular-disease/
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Case Presentation

Clinical History and Laboratory Findings

A 47-year-old woman was admitted to the endocrinology department of our hospital with chief complaints of bilateral lower extremity edema, left lower limb pain, abdominal purplish striae, and abdominal distension for 9 months. Two years ago, the patient had a hysterectomy at a local hospital for hysteromyoma. She had no previous radiotherapeutic treatment or other medical history. She weighed 90 kg and was 165 cm tall with a body mass index (BMI) of 33. Physical examination showed typical features of Cushing’s syndrome, including centripetal obesity, moon face, pedal edema, and buffalo hump. Her skin was thin and dry, with acne and hirsutism. On admission, her blood pressure was 146/115 mmHg and routine biochemical blood tests confirmed comorbidity with diabetes mellitus, hyperlipidemia, and hypokalemia.

Endocrine measurements showed that her serum ACTH was 169 pg/mL (reference value: 5–50 pg/mL), cortisol (8 am) was 933 nmol/L (reference value: 138–690 nmol/L), and cortisol (4 pm) was 778 nmol/L (reference value: 69–345 nmol/L), indicating that her ACTH and cortisol levels were dramatically increased. Cortisol secretion was increased and had lost its circadian rhythm. The low-dose dexamethasone suppression test showed that cortisol suppression was < 50%, while a >50% suppression of cortisol was found in the high-dose dexamethasone suppression test. Serum prolactin, follicle-stimulating hormone, luteinizing hormone, testosterone, free thyroid hormone (FT3 and FT4), and thyrotropin values were normal. Endocrinological evaluation suspected that pituitary lesions caused Cushing syndrome...
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Walter Jean, MD, has joined Lehigh Valley Health Network (LVHN) and will serve as Chief of Neurosurgery.

Jean is a board-certified neurosurgeon with expertise in complex intracranial surgery. He is known world-wide for his expertise in complex brain surgery. With nearly 20 years’ experience in both open and endoscopic skull base surgery, Jean has several clinical interests including acoustic neuromas, pituitary adenomas, skull base meningioma, intraventricular tumors, and trigeminal neuralgia. His acclaimed textbook, “Skull Base Surgery: Strategies,” is used by neurosurgeons across the globe to learn about open and endoscopic skull base surgery.

“I’m excited to join LVHN and continue to build on their solid foundation,” Jean says. “I hope to take LVHN Neurosurgery to the next level with robust clinical activity, research and innovation as well as education.”

As a pioneer, Jean utilizes virtual reality in neurosurgery.

“Virtual reality allows everyday people to fly to new lands in video games, augmented reality takes fighter pilots through scenarios training them for the unexpected,” Jean says. “Now brain surgeons and patients can also use these technologies to fly through the brain.”

Why is this so important? Jean says for those who find themselves in need of complex brain surgery, not only can they better visualize their upcoming procedure, their surgeon also gains additional insight. Jean is the only physician in the area using this groundbreaking technology.

“We meet hundreds of patients and explain to them our surgical plan,” Jean says. “That communication can be difficult at times. Once we have a patient’s brain scans loaded into the augmented reality software, they have the ability to see their own anatomy to gain a better understanding. When patients place the headset over their eyes, they are transported to a virtual replica of their own brain.”

The experience offers a visual explanation which is often easier to understand than medical terminology.
...
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For years before and after their diagnosis, people with Cushing’s disease use more psychotropic medications — those that affect mood, thoughts, or perception — for mental health problems than their healthy peers, a study in Sweden found.

Notably, patients experiencing long-term disease remission still showed higher use of antidepressants and sleeping pills than healthy individuals.

These findings highlight Cushing’s persistent negative effects on mental health, according to researchers.

Additionally, the results of this study, based on prescribed medication dispenses in Sweden, support the importance of earlier diagnoses of Cushing’s disease — and the need for close and long-term monitoring of neuropsychiatric symptoms in this patient population, the researchers said.

The study, “Psychotropic drugs in patients with Cushing’s disease before diagnosis and at long-term follow-up — a nationwide study,” was published in the Journal of Clinical Endocrinology & Metabolism.
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Register Now! 2nd annual WAPO eSummit March 19 & 20, 2021



 



World Alliance of Pituitary Organizations represents the voice of 37 patient advocacies around the globe. This event is also translated into Español, there’s something for everyone!




The World Alliance of Pituitary Organizations (‘WAPO’) represents the voice of 37 patient advocacies around the globe.

We seek to empower and improve the Quality of Life of Pituitary Patients, by sharing knowledge and inform you about treatment choices.

By registering to the WAPO eSummit 2021, you will have a unique opportunity to learn about the latest medical research, raise questions and dialogue with international experts on the pituitary gland!

Get involved and register in one of the provided languages.

We are looking forward to meeting you!

For more information visit the link below.



 



https://web.cvent.com/event/aaf5e35f-793d-49ff-9f4b-138f155dbbc2/summary?fbclid=IwAR0-ah0tkUnx7HmBkQlEoIMOEBvQOGxnvz_XP7fC7BDKhEKkuBhgXfVQL04



 



 
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~ RECORLEV® (levoketoconazole) New Drug Application is Supported by Previously-Reported Positive and Statistically Significant Results from the Phase 3 SONICS and LOGICS Studies ~

~ Nearly 40 Percent of Prescription-Treated Endogenous Cushing’s Syndrome Patients in the U.S. Are Not Well-Controlled, Underscoring Need for New, Safe and Effective Pharmaceutical Options to Help Regulate Cortisol Levels ~

~ If Approved Following a Projected 10-Month Review Cycle, RECORLEV is Anticipated to Launch in First Quarter of 2022 ~..
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Over the past few months, COVID-19, the pandemic disease caused by severe acute respiratory syndrome coronavirus 2, has been associated with a high rate of infection and lethality, especially in patients with comorbidities such as obesity, hypertension, diabetes, and immunodeficiency syndromes.1
These cardiometabolic and immune impairments are common comorbidities of Cushing's syndrome, a condition characterised by excessive exposure to endogenous glucocorticoids. In patients with Cushing's syndrome, the increased cardiovascular risk factors, amplified by the increased thromboembolic risk, and the increased susceptibility to severe infections, are the two leading causes of death.2
In healthy individuals in the early phase of infection, at the physiological level, glucocorticoids exert immunoenhancing effects, priming danger sensor and cytokine receptor expression, thereby sensitising the immune system to external agents.3 However, over time and with sustained high concentrations, the principal effects of glucocorticoids are to produce profound immunosuppression, with depression of innate and adaptive immune responses. Therefore, chronic excessive glucocorticoids might hamper the initial response to external agents and the consequent activation of adaptive responses. Subsequently, a decrease in the number of B-lymphocytes and T-lymphocytes, as well as a reduction in T-helper cell activation might favour opportunistic and intracellular infection. As a result, an increased risk of infection is seen, with an estimated prevalence of 21–51% in patients with Cushing's syndrome.4 Therefore, despite the absence of data on the effects of COVID-19 in patients with Cushing's syndrome, one can make observations related to the compromised immune state in patients with Cushing's syndrome and provide expert advice for patients with a current or past history of Cushing's syndrome.
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About

Who Should Attend: Individuals with Cushing’s disease and their caregivers.

When: Thursday, March 4, 2021, 6 PM, Eastern

Where: Virtual presentation via Zoom. Click the Zoom link for the online event or call one of the phone numbers below:

833-548-0276 (US Toll-free)
833-548-0282 (US Toll-free)
877-853-5257 (US Toll-free)
888-475-4499 (US Toll-free)

Whether you log on via computer or telephone, you will be asked for the meeting ID and password.

Meeting ID: 969 3392 7432
Passcode: 945590

Attendees will be muted until the end of the presentation, at which time we will take questions.

There is no fee for this event.

Contact Maggie Bobrowitz with any questions: Margaret.Bobrowitz@DignityHealth.org or (888) 726-9370.
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The Journal of Clinical Endocrinology & Metabolism, dgab079, https://doi.org/10.1210/clinem/dgab079

Abstract

Context



Psychiatric symptoms are common in Cushing’s disease (CD) and seem only partly reversible following treatment.

Objective



To investigate drug dispenses associated to psychiatric morbidity in CD patients before treatment and during long-term follow-up.

Design



Nationwide longitudinal register-based study.

Setting



University Hospitals in Sweden.

Subjects



CD patients diagnosed between 1990 and 2018 (N=372) were identified in the Swedish Pituitary Register. Longitudinal data was collected from 5 years before, at diagnosis and during follow-up. Four matched controls per patient were included. Cross-sectional subgroup analysis of 76 patients in sustained remission was also performed.

Main outcome measures



Data from the Swedish Prescribed Drug Register and the Patient Register.

Results



In the 5-year period before, and at diagnosis, use of antidepressants (OR 2.2[95%CI 1.3-3.7] and 2.3[1.6-3.5]), anxiolytics (2.9[1.6-5.3] and 3.9[2.3-6.6]) and sleeping pills (2.1[1.2-3.7] and 3.8[2.4-5.9]) was more common in CD than controls. ORs remained elevated at 5-year follow-up for antidepressants (2.4[1.5-3.9]) and sleeping pills (3.1[1.9-5.3]). Proportions of CD patients using antidepressants (26%) and sleeping pills (22%) were unchanged at diagnosis and 5-year follow-up, whereas drugs for hypertension and diabetes decreased. Patients in sustained remission for median 9.3 years (IQR 8.1-10.4) had higher use of antidepressants (OR 2.0[1.1-3.8]) and sleeping pills (2.4[1.3-4.7]), but not of drugs for hypertension.

Conclusions...

Cushing’s syndrome, hypercortisolism, neuropsychiatry, depression, sleeping disorder
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https://doi.org/10.1002/jbmr.4033

 

ABSTRACT

Endogenous Cushing's syndrome (CS) is a rare cause of secondary osteoporosis. The long‐term consequences for bone metabolism after successful surgical treatment remain largely unknown. We assessed bone mineral density and fracture rates in 89 patients with confirmed Cushing's syndrome at the time of diagnosis and 2 years after successful tumor resection. We determined five bone turnover markers at the time of diagnosis, 1 and 2 years postoperatively. The bone turnover markers osteocalcin, intact procollagen‐IN‐propeptide (PINP), alkaline bone phosphatase, CTX‐I, and TrAcP 5b were measured in plasma or serum by chemiluminescent immunoassays. For comparison, 71 sex‐, age‐, and body mass index (BMI)‐matched patients in whom Cushing's syndrome had been excluded were studied. None of the patients received specific osteoanabolic treatment. At time of diagnosis, 69% of the patients had low bone mass (mean T‐score = −1.4 ± 1.1). Two years after successful surgery, the T‐score had improved in 78% of patients (mean T‐score 2 years postoperatively −1.0 ± 0.9). The bone formation markers osteocalcin and intact PINP were significantly decreased at time of diagnosis (p ≤ 0.001 and p = 0.03, respectively), and the bone resorption marker CTX‐I and TrAcP 5b increased. Postoperatively, the bone formation markers showed a three‐ to fourfold increase 1 year postoperatively, with a moderate decline thereafter. The bone resorption markers showed a similar but less pronounced course. This study shows that the phase immediately after surgical remission from endogenous CS is characterized by a high rate of bone turnover resulting in a striking net increase in bone mineral density in the majority of patients. © 2020 The Authors. Journal of Bone and Mineral Research published by American Society for Bone and Mineral Research...

 
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Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing's Disease), growth hormone insufficiency, panhypopituitary.  I had some issues after my first COVID-19 injection (Moderna) but not too bad.  My second injection will be March 15.

January 12, 2021 my Mom's doctor called and offered her the vaccine but she didn’t want it. She said she didn't go anywhere.  True but my DH and I do - and she has a friend visit once a month.  I joked to a friend that I could put on a wig and go as her since we have the same first name.

I have been doing the COVID-19 Patient Monitoring System through my doctor’s office since it was first offered.  Just a few boxes of how I’m feeling, if I wore a mask and so on.  I am a strong believer in helping to participate in medical trials, as I mention below.  This one is very easy and takes about a minute out of my day.  Easy-peasy.

I’ve been on the Fairfax Waiting List since January 19, 2021.  As of right now, they are still scheduling people from January 18 - I read somewhere that 41,000-some people registered on the 18th, so it may be a while to get to my date.  They have set up an interesting dashboard to track how things are going  - https://www.fairfaxcounty.gov/health/novel-coronavirus/vaccine/data

I got a link from a friend when CVS opened up clinics in my state - https://www.cvs.com/vaccine/intake/store/covid-screener/covid-qns

I kept the CVS link open and checked it every morning.  Everything was full until Saturday, February 13.  I was able to register at about 5 am.  When I went back about 20 minutes later, everything was gone...
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