(For the General Public) Are there any advantages to human growth hormone?

Posted on June 22, 2016 by MaryO

Harvard Men’s Health Watch

Ask the doctor

Q. I’ve heard about the benefits of human growth hormone (HGH) for older individuals. Is this something I should try?

A. The benefits of HGH supplementation for older adults are unproven, and perhaps most telling is that these products have a negligible effect on HGH levels. In addition, there are concerns about potential side effects.

HGH comes in two forms: injections and pills. Since HGH injections are difficult to administer, pills are often preferred. Yet, these supplements do not actually contain HGH like injections do, because the hormone would quickly break down in the digestive tract. Instead, they contain amino acids that are absorbed by the body, which raises HGH levels. (They are also more expensive and can cost $100-plus for a month’s supply.)

HGH levels naturally decline as people age, which makes sense since our bodies stop growing during the late teenage years. So why would you need higher HGH levels later in life? The hype around HGH comes from a few studies that showed HGH injections can increase lean body mass and shrink body fat, which led to claims of HGH as an “anti-aging” hormone. However, the effects on strength and body weight are quite minimal. In addition, HGH can increase the amount of soft tissues in the body, which can lead to swelling, joint pain, carpal tunnel syndrome, and breast tenderness in men.

There is also a concern that HGH might promote cancer growth. (MaryO’Note:  I always mentioned this to doctors when I was diagnosed with kidney cancer.  Even though I couldn’t take HGH for the first 5 years after diagnosis, none of my doctors would confirm a connection between HGH and my cancer)

If you want to improve your strength, forget about HGH and increase your exercise. Some studies suggest this alone may be more effective than HGH supplementation for raising growth hormone levels in the body.

—William Kormos, MD
Editor in Chief, Harvard Men’s Health Watch

Originally published: July 2016

Adapted from http://www.health.harvard.edu/mens-health/are-there-any-advantages-to-human-growth-hormone

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Ectopic adrenocorticotropic hormone syndrome caused by neuroendocrine tumors of the thymus

Posted on April 30, 2016 by MaryO

Background and purpose: Thymic neuroendocrine carcinomas (TNECs) are extremely uncommon. Certain cases of TNECs can produce the adrenocorticotropic hormone (ACTH) and cause ectopic ACTH syndrome (EAS). The current literature on this topic consists mainly of case reports, and therapeutic guidelines are lacking. The aim of this study was to discuss the diagnosis, surgical management, and prognosis of EAS caused by TNECs to improve clinical experience with this rare disease.

Methods: From June 1984 to June 2014, at the Peking Union Medical College Hospital, the surgical interventions and follow-up outcomes of 16 consecutive patients (eight men and eight women) with EAS caused by TNECs were retrospectively analyzed.

Results: The median age was 32.5 years (range: 13–47 years), and the median disease duration was 8.5 months (range: 1–150 months). All patients presented with clinical and biochemical evidence indicating a diagnosis of Cushing’s syndrome.

Contrast-enhanced thoracic computed tomography scans were critical to locating the ACTH-producing tumor and evaluating the feasibility of resection. All patients underwent surgery. One patient died of septicemia in the intensive care unit 2 weeks after surgery. No other morbidity or mortality occurred during the perioperative period. The median overall survival (OS) was 41 months (95% CI: 30.3–51.7 months), and the progression-free survival was 28 months (95% CI: 21.6–34.3 months). Both overall survival (P=0.002) and progression-free survival (P=0.030) improved significantly after complete resection.

Conclusion: TNEC is an extremely aggressive disease that should be considered when treating patients with Cushing’s syndrome due to ectopic ACTH secretion. In particular, all suspected patients should undergo contrast-enhanced thoracic computed tomography scans to facilitate early diagnosis. The current first-line treatment is surgical resection, and complete resection is a favorable prognostic factor. However, additional patients and a longer follow-up will be needed to determine the variables that are predictive of survival and to improve patient prognosis.

Download this article at https://www.dovepress.com/ectopic-adrenocorticotropic-hormone-syndrome-caused-by-neuroendocrine–peer-reviewed-article-OTT

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Cushing’s Syndrome and Primary Adrenal Disorders

Posted on April 5, 2016 by MaryO

endo2016

 

April 03, 2016

Oral Session: Cushing’s Syndrome and Primary Adrenal Disorders

Patients with diabetes mellitus diagnosed with Addison’s disease have a markedly increased additional risk of death

D Chantzichristos, A Persson, B Eliasson, M Miftaraj, S Franzén, R Bergthorsdottir, S Gudbjörnsdottir, A-M Svensson, G Johannsson

Summary: Researchers sought to determine if patients with diabetes (DM) who are diagnosed with Addison’s disease (AD) have an increased risk of mortality (DM+AD). They concluded that patients diagnosed with DM+AD had a nearly 4-fold increased risk of mortality compared to controls.

Methods:

  • Researchers identified patients who were first diagnosed with DM (type 1 or 2) and then AD using both the Swedish National Diabetes Register (NDR) and the National Inpatient Register between January 1st, 1996 and December 31th, 2012.
  • Each patients was matched with 5 controls based on sex, year of birth, type of DM, year when DM was diagnosed, and period of time in NDR were selected in NDR.
  • Researchers obtained causes of death data for both groups during the same time period from the Swedish Register for Cause-Specific Mortality.

Results:

  • A total of 1,355 patients were identified: 226 patients had DM (type 1 or 2) and AD and 1,129 matched DM controls.
  • At baseline, patients with DM+AD and patients with DM had a mean (±SD) age of 52.3 (±20.1) and 54.1 (±18.9) years, respectively.
  • In both groups, 47% were women and 65% had type 1 DM.
  • Mean (±SD) HbA1c at baseline was 7.8% (±3.5%) or 62.0 (±14.7) mmol/mol for the DM+AD group and 7.6% (±3.5%) or 59.6 (±14.7) mmol/mol for the DM controls.
  •  More than one-quarter of patients with DM+AD (64/226, 28%) died vs 112 of 1,129 controls (10%).
  • The estimated relative risk increase (hazard ratio) in overall mortality in the DM+AD group was 3.83 (95% confidence interval, 2.80 to 5.24) compared with the DM controls.
  • There was no significant association between type of DM and gender on relative mortality risk.
  • The most common cause of death in both groups was cardiovascular diseases (33% and 34%, respectively).
  • The second most common cause of death in DM+AD patients was DM and its related complications (23%) and cancer in the DM group (29%).
  • Fourteen percent of DM+AD patients died from cancer.

From http://www.mdlinx.com/endocrinology/conference-abstract.cfm/ZZ6AA1CEC190F5428EA690616DAA054518/56981/?utm_source=confcoveragenl&utm_medium=newsletter&utm_content=abstract-list&utm_campaign=abstract-ENDO2016&nonus=0

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Rare Disease Day, 2016!

Posted on February 29, 2016 by MaryO

rare-disease-day-robin

There are events all over the world today.  What are *You* doing to raise awareness for Cushing’s, Addison’s or other rare disease you have?

Many thanks to Robin for the great graphic!

 

The USA joined Rare Disease Day in 2009, making the campaign a truly international affair. Diverse events and campaigns have been organised since then, including educational programmes in schools and a collection of photographs entitled “Handprints across America” with the Rare Disease logo across the USA. In 2013 President Barack Obama sent a letter proclaiming his support of the day. In 2015, the day was a nation-wide affair, with events everywhere from California to New York to Texas. More than 35 states participated, holding conferences, artistic events, fundraising walks, and benefit dinners. In Chicago, a “Rock Rare Diseases” event created a playlist that was featured at many hospitals on the special day.

NORD, the National Organization for Rare Disorders, is committed to the identification, treatment, and cure of rare diseases through programmes of education, advocacy, research and patient services. They can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder. Find their contact information on the bottom of this page.

You can also get involved! Do you know of any events not listed here? Email us at rarediseaseday@eurordis.org.

On Monday, February 29th, Rare Disease Week on Capitol Hill kicks off! Hundreds of advocates from around the country will be in Washington, D.C. for a full week of events. Space remains for the Caucus Briefing on Thursday March 3rd and the Rare Artist Reception. Can’t make it to Washington D.C.? NORD is helping coordinate State House Events across the U.S.

On Wednesday, March 2nd, the EveryLife Foundation for Rare Diseases is holding a Virtual Lobby Day for advocates who cannot attend the events in D.C. The event will ask advocates to contact Congress and ask that they co-sponsor the OPEN ACT, legislation to double the number of rare disease treatments. Please share widely on social media.

On Thursday, March 3rd, the first bicameral Congressional Rare Disease Caucus briefing will be held in the Auditorium of the U.S. Capitol Visitor Center at noon. Attendees will hear from the co-chairs of the Caucus and a panel discussion featuring key thought-leaders from the patient, regulatory, and industry communities who will discuss the Rare Disease Ecosystem.

On Wednesday, March 9th, the Senate Health, Education, Labor, and Pensions Committee (HELP) will hold its second hearing as part of its biomedical innovation initiative. To date, the Advancing Hope Act (Priority Review Voucher program at FDA) is scheduled for consideration. The final hearing is slated for April 6th, although no bills have been announced for consideration.

On Wednesday, March 16th, the EveryLife Foundation for Rare Diseases will hold a public webinar on newborn screening. The Foundation has just launched newborn screening legislation in California to expand and streamline screening for rare diseases.

On Wednesday, March 23rd, RDLA will hold its next monthly webinar. The agenda is OPEN! Please send suggestions for action items or policy issues to Vignesh Ganapathy at vganapathy@everylifefoundation.org.

Filed under: adrenal, adrenal crisis, Cancer, Cushing's, pituitary, Rare Diseases | Tagged: , , , , | Leave a comment »

Woman Shaves Head Before Wedding to Support Best Friend

Posted on November 24, 2015 by MaryO

(IOWA) WCMH– An Iowa woman shaved her head three months before her wedding to support her best friend who was diagnosed with Cushing’s disease.

 

Alycia Kuberski didn’t think about how her wedding photos were going to look, but instead focused on her best friend Gina Gregoire Helton.

Helton was diagnosed with Cushing’s disease in 2014. It’s a rare illness that was caused by a cancerous carcinoid tumor in her left lung. In January of 2015, doctor’s removed Helton’s left lung and found the cancer had spread to her lymph nodes.

Four months later she went through chemotherapy and radiation. The treatments caused Helton to lose her hair in clumps. She decided to take control of her body and throw a head shaving party.

Helton did not expect her best friend to shave her head right before her wedding.

gina 1
Alycia with Gina on her wedding day.

“It meant so much to me that my friend would be willing to shave her head for me, especially 3 months before her wedding. I tried to talk her out of it, but she insisted, stating ‘It’s just hair, it is nothing compared to what you have been through,’ Gina Gregoire Helton said.

Helton said this brave and selfless move helped get the word out about Cushing’s disease.

“Her shaving her head did bring awareness because people would ask and she was able to share my story and bring awareness to Cushing’s disease, which is something I am very passionate about,” Helton said.

Helton has been cancer and Cushing’s disease-free since August.

gina 2
Best friends Alicia and Gina.
gina helton
 Alicia and Gina before shaving their heads.
gina2
Bold is Beautiful! Gina’s shaving head party.

From http://nbc4i.com/2015/11/23/woman-shaves-head-before-wedding-to-support-best-friend/

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