Day 1: Cushing’s Awareness Challenge 2015

Posted on April 1, 2015 by MaryO

April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on the 8th.

30-posts

 

Thanks to Robin for this wonderful past logo!  I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year.  More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.

This year’s logo, also thanks to Robin:

cushie-blogger-2015-large

 

April Fool's Day

How fitting that this challenge should begin on April Fool’s Day.  So much of Cushing’s  Syndrome/Disease makes us Cushies seem like we’re the April Fool.  Maybe, just maybe, it’s the doctors who are the April Fools…

Doctors tell us Cushing’s is too rare – you couldn’t possibly have it.  April Fools!

All you have to do is exercise and diet.  You’ll feel better.  April Fools!

Those bruises on your legs?  You’re just clumsy. April Fools!

Sorry you’re growing all that hair on your chin.  That happens as you age, you know.  April Fools!

Did you say you sleep all day?  You’re just lazy.  If you exercised more, you’d have more energy. April Fools!

You don’t have stretch marks.  April Fools!

You have stretch marks but they are the wrong [color/length/direction] April Fools!

The hump on the back of your neck is from your poor posture. April Fools!

Your MRI didn’t show a tumor.  You couldn’t have Cushing’s. April Fools!

This is all in your mind.  Take this prescription for antidepressants and go home.  April Fools!

If you have this one surgery, your life will get back to normal within a few months. April Fools!

What?  You had transsphenoidal surgery for Cushing’s?  You wasted your time and money. April Fools!

I am the doctor.  I know everything.  Do not try to find out any information online. You could not have Cushing’s.  It’s too rare…  April FOOL!

All this reminds me of a wonderful video a message board member posted a while ago:

It’s Literally Impossible to Have Cushing’s

 

So now – who is the April Fool?  It wasn’t me.  Don’t let it be you, either!

 

 

 

 

Filed under: Cushing's, pituitary, Rare Diseases, Treatments, Video | Tagged: , , , , , , , , , , , , , , , , , , , , , , | Leave a comment »

Webinar: Psychosocial Aspects of Pituitary Disease

Posted on March 15, 2015 by MaryO

Jessica Diller Martino
Professor – History of Psychology
City University of New York

Register Now!

After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.

Date: Thursday, March 19, 2015
Time: 10:00 AM – 11:00 AM Pacific Standard Time

Webinar Description:

Please join us on March 19th for a webinar on a topic that is too often ignored: the mental health of pituitary patients. Jessica Diller Kovler, Professor in the History of Psychology at the City University of New York, will join us to discuss psychosocial aspects of pituitary disease.

Learn about the symptoms before and after diagnosis, which symptoms are observed in each type of pituitary dysfunction, and learn ways to cope and connect with others.

Presenter Bio:

Jessica Diller Kovler is a Professor in the History of Psychology at the City University of New York, where she is researching psychosocial aspects of pituitary disease. She is also a medical journalist and former reporter for The New York Times, and has worked collaboratively with the Pituitary Network Association for over a decade.

Filed under: Meetings and Conferences, pituitary | Tagged: , , , | 2 Comments »

What Causes Cushing’s Disease?

Posted on March 12, 2015 by MaryO

0276f-pituitary-gland

 

A condition in which the body produces too much cortisol, Cushing’s disease occurs when a tumor on the pituitary gland makes the gland create too much ACTH, the hormone that stimulates the production and release of cortisol (also known as “the stress hormone”). It may also occur with excess growth of the pituitary gland, known as hyperplasia. For most patients, Cushing’s disease will show itself through symptoms like red lines on the abdomen, abdominal weight gain and roundness to the face. And while the condition only affects 10 to 15 people per million per year, patients who suffer with it understandably wonder why. What are the causes? Where would a pituitary gland tumor come from? What leads to excess growth of that gland? To help answer these questions, here’s a look at Cushing’s disease causes:

Causes of Cushing’s Disease

The most common cause for Cushing’s disease is adenoma, a usually benign tumor on the pituitary gland. Because the tumors are normally pretty small, they can be hard to diagnose. For this reason, many patients who have Cushing’s disease don’t find out right away. Meeting with an endocrinologist can help the diagnosis process, improving your chances for a fast, successful recognition of the disease.

Risk Factors for Cushing’s Disease

Even though it’s a rare condition, Cushing’s disease occurs more commonly in women, particularly those between the ages of 20 and 50. Other factors that may increase the risk of Cushing’s disease include obesity, type 2 diabetes, poorly controlled blood sugar levels and high blood pressure. While none of these factors are a direct cause of the condition, they are associated with higher prevalence of it.

Cushing’s Disease vs. Cushing’s Syndrome

Often mistaken for one another, Cushing’s disease and Cushing’s syndrome are actually not the same condition. What they have in common is that they both involve the body’s producing too much cortisol. Cushing’s disease is a medical condition, however, while Cushing’s syndrome is a symptom of it. Cushing’s syndrome will often occur when a patient is taking corticosteroid medication.

Why You Should See an Endocrinologist

If you believe you or someone you love may have Cushing’s disease, it is best to see a specialist. Symptoms develop slowly and sometimes in cycles, so without proper testing it can be hard to identify what’s happening. A skilled endocrinologist can conduct hormone blood tests to measure blood cortisol levels at different times. He or she can also schedule an MRI for an individual who is not taking cortisol medications, in order to isolate the location of any tumors.

Have you been dealing with the symptoms of elevated cortisol levels, such as unexplained weight gain, particularly in the abdominal area and/or back of the neck? Is your skin or vision changing? These symptoms could be indicating a deeper problem in your body — so schedule an appointment to have your condition evaluated by a professional as soon as you can. Through proper treatment, you may be able to reduce or even eliminate your symptoms and be restored to full health again.

From http://www.hormone.org/diseases-and-conditions/pituitary/secretory-tumors/cushings-disease/cushings-disease-causes

Filed under: Cushing's, FAQ, pituitary | Tagged: , , , , , , | 1 Comment »

Does a normal urine free cortisol result rule out Cushing’s syndrome?

Posted on March 7, 2015 by MaryO

ENDO_2015

 

March 07, 2015

SAT 379-412-Cushing’s Syndrome

Does a normal urine free cortisol result rule out Cushing’s syndrome?

ST Sharma, LK Nieman

Summary: Researchers conducted this study to assess the diagnostic accuarcy of urine free cortisol (UFC) and 24-hour urine 17-hydroxycorticosteroids (170HCS) in patients with Cushing’s syndrome, concluding that in patients with mild CS, UFC can be falsely normal or only minimally elevated. Further, they found that to help in making a diagnosis and prevent treatment delays, clinicians may consider incorporating multiple collections and use of complimentary screening tests including 24-hour urine 17OHCS and late night salivary cortisol (LNSC) testing.

Methods:

  • For this retrospective study, researchers included all CS patients evaluated at the National Institutes of Health (NIH) from 2009 to 2014.
  • The screening tests used for CS included UFC, 17OHCS, midnight serum cortisol and low dose (1 mg overnight or 2-day 2 mg/day) dexamethasone suppression test (DST).
  • They defined abnormal as values above reference range for UFC, 17OHCS and LNSC, a midnight serum cortisol ≥7.5 mcg/dL, and post-dexamethasone cortisol values ≥1.8 mcg/dL.
  • Hourly 24-hour sampling for cortisol was performed in a few cases with a mild clinical phenotype and equivocal test results.
  • Researchers measured UFC using liquid chromatography/tandem mass spectrometry (LC-MS/MS), and 17OHCS was measured using colorimetric methodology with Porter-Silber reaction (reported as mg/g of creatinine).
  • For this study, they used the mean of the first two UFC and 17OHCS values (appropriate collection by urine volume and creatinine) obtained within 30 days of initial NIH presentation.

Results:

  • In all, 72 patients were diagnosed with CS (aged 18-77 years, 51 females), 51 of whom had CD, 10 had ectopic CS, and 2 had an adrenal source of Cushing’s based on pathology.
  • Biochemical tests such as inferior petrosal sinus sampling (IPSS) suggested ectopic CS, but no tumor was found (occult) in 6 patients.
  • In 2 patients with failed transsphenoidal surgery, IPSS was indicative of a pituitary source, and one patient did not complete evaluation for ACTH-dependent CS.
  • UFC results were available in all patients, 17OHCS in 70, LNSC in 21, midnight serum cortisol in 68, and DST results in 37 patients.
  • UFC was falsely normal in 6 patients and only minimally elevated (<2 x ULN) in 13 patients (normal renal function, no history of cyclicity, all had CD); of these 19 patients, 24-hour 17OHCS was abnormal in all, LNSC was abnormal in 12, midnight serum cortisol was abnormal in 18, and DST was abnormal in 12 patients.
  • Hourly 24-hour sampling for cortisol performed in 3 of these patients revealed abnormal nadir (>7.5 mcg/dL) and mean daily serum cortisol (>9 mcg/dL) levels.

From http://www.mdlinx.com/endocrinology/conference-abstract.cfm/ZZ5BA369FDE9DE4CED82CB6A7CD5BFD1BE/42581/?utm_source=confcoveragenl&utm_medium=newsletter&utm_content=abstract-list&utm_campaign=abstract-ENDO2015&nonus=0

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Reduced mortality in patients with GH replacement therapy – a Swedish study based on more than 4,000 patient-years

Posted on March 6, 2015 by MaryO

ENDO_2015

 

March 06, 2015

OR20-Pituitary Tumors-New Clinical Considerations

Reduced mortality in patients with GH replacement therapy – a Swedish study based on more than 4,000 patient-years

DS Olsson, AG Nilsson, P Trimpou, B-A Bengtsson, E Andersson, G Johannsson

Summary: In this study, researchers assessed mortality in patients with hypopituitarism with and without long-term growth hormone (GH) replacement therapy (GHRT). Theirs is the first study to report a reduced mortality in non-functioning pituitary adenoma (NFPA) patients with long-term GHRT compared with both the general population and NFPA patients who have not received GHRT, despite a more severe hypopituitarism. Further, researchers found that mortality due to circulatory diseases was not increased in NFPA patients regardless of GHRT. Finally, they found that death due to malignant tumors was decreased in the GHRT-group.

Methods:

  • To eliminate the influence of the etiology of hypopituitarism on mortality, researchers included only  patients with NFPA were studied.
  • Using the Swedish National Patient Registry, researchers identified NFPA patients within the Sahlgrenska University Hospital’s catchment-area (1.5 million inhabitants), and retrospectively reviewed records of all identified NFPA patients from 1987 to 2011.
  • Standardized mortality ratios (SMRs) with 95% confidence intervals (reference: Swedish population) were calculated and cox-regression analyses were used to identify predictors for mortality.

Results:

  • Researchers identified 437 patients with NFPA, of whom 435 (99%) had complete records and were included in the study.
  • They observed that GHRT had been used for at least 1 year by 188 patients (132 men, 56 women), while 247 patients had not been treated with GHRT (148 men, 99 women).
  • Mean (±SD) age at diagnosis was lower (P<0.001) in the GHRT-group (54.2±11.7) compared to the non-GHRT-group (63.8±15.6).
  • Mean duration of GHRT was 10.9 (6.7) years, and mean follow-up time in the non-GHRT-group was 7.0 (5.4) years.
  • In the GHRT-group, ACTH deficiency, gonadotropic deficiency and thyrotrophic deficiency were more frequent (71%, 74% and 93%, respectively) compared with the non-GHRT-group (38%, 34% and 50%).
  • The total number of events/deaths in the study was 83.
  • In the GHRT group, SMR was 0.49 (0.27-0.80, P=0.002) compared with 0.98 (0.76-1.24;P=0.94) in the non-GHRT-group; SMR was lower in the GHRT-group compared to the non-GHRT-group (P=0.02).
  • Researchers found that Cox-regression analyses identified GHRT (P=0.01) and younger age at diagnosis (P<0.0001) as predictors of decreased mortality.
  • They also found that cause-specific mortality due to circulatory diseases was not increased (GHRT-group, SMR 0.62; 0.25-1.28; Non-GHRT-group, SMR 0.96; 0.65-1.36).
  • SMR for malignant tumors was reduced in the GHRT-group (SMR 0.19; 0.02-0.68; P=0.003), and as expected in the non-GHRT-group (SMR 0.74; 0.37-1.31; P=0.37).

From http://www.mdlinx.com/endocrinology/conference-abstract.cfm/ZZ5BA369FDE9DE4CED82CB6A7CD5BFD1BE/42341/?utm_source=confcoveragenl&utm_medium=newsletter&utm_content=abstract-list&utm_campaign=abstract-ENDO2015&nonus=0

Filed under: Cushing's, growth hormone, Meetings and Conferences, pituitary, Treatments | Tagged: , , , , | Leave a comment »

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