Suzanne is from Nottingham, England.  She is not yet diagnosed but test results show high cortisol.  She asked her GP if her contraceptive  (Yaz) could be causing her symptoms and he said no.

Read more at https://cushingsbios.com/2017/07/16/suzanne-suzanna-undiagnosed-bio/

From Kathleen: I feel SO much better, I was 166lbs two days before my surgery on November 9th and today I am 125lbs almost back down to my normal weight! I still get a little tired...

Read more at https://cushingsbios.com/2017/02/06/kathleen-foregonelegacy-pituitary-bio/

Talking about Cushing’s from the spouse/caretaker point of view He is also Monica’s producer/ manager.  For the two years during Monica’s diagnosis and surgeries he worked from home as a computer programmer so that he could take care of Monica. Monica and Kevin were married two years ago, just before Monica’s pituitary surgery...

Read more at http://www.blogtalkradio.com/cushingshelp/2008/04/24/interview-with-monicas-husband-kevin-about-caretakers

...My wife is struggling with Cushing’s as well, and it’s difficult to find people with the same experiences here as I’m sure you know....

Read more at https://cushingsbios.com/2015/09/26/ghadeer-gogo-undiagnosed-bio/

I met Malia just a few months ago. She was such a joy to visit with. I had the opportunity to meet her parents as well... 

Read more at https://cushingsbios.com/2017/01/04/in-memory-of-malia-kenney-january-4-2017/

Pituitary Tumors, Adrenal Tumors, and Other Cushing’s Syndrome Causes

Read more at https://cushieblog.com/2016/10/02/causes-of-cushings-syndrome/

Sheryl had adrenal surgery (BLA) in 1974.

Read more at https://cushingsbios.com/2017/05/21/sheryl-adrenal-patient/

Adrenal insufficiency is a condition that develops when most of the adrenal gland is not functioning normally. Primary adrenal insufficiency arises due to the damage of the glands or because of using drugs that halt synthesis of cortisol. On the other hand, secondary adrenal insufficiency stems from processes that inhibit the secretion of the adrenocorticotropic hormone (ACTH) by the hypophysis as a result of a hypothalamic or pituitary pathology. The former is sometimes also referred to as tertiary adrenal insufficiency.

Read more at https://cushieblog.com/2016/11/20/adrenal-insufficiency-primary-and-secondary/

Robin suggested this at the Pittsburgh Cushing's Dinner.

These are the ones I gave out at the dinner and send out with the awareness bracelets. I print them on special tri-fold brochure paper and that works out well.

I do update these after each meeting, when I have new pictures, so if you print them out, check back now and then for the latest copy smile.gif

Newest version has a Columbus, OH picture

Print your own Cushing's brochures at http://www.cushings-help.com/downloads/brochure.pdf

I would first like to say how happy i am that this website exists it makes me feel so much better that others have gone through what i am currently experiencing and have made amazing recoveries! 

Read more at https://cushieblogger.com/testimonial/victoria/

(Golden Oldie) Mandy is from Southend on Sea, England.  She had several diagnoses and had seen a vast array of medical personnel.  She was diagnosed with PCOS but not yet with Cushing's.

Read more at https://cushingsbios.com/2017/02/18/mandy-undiagnosed-bio/

THE KNOWLEDGE AND SUPPORT IS A LIFE RAFT ...THANKYOU

Read more at https://cushieblogger.com/testimonial/patricia-g/

Mr Cernik suffers from ultra-rare Cushing's syndrome which causes high levels of the hormone Cortisol - a steroid that regulates the metabolism and immune system.

Read more at https://cushingsbios.com/2017/04/18/a-new-newspaper-article-on-jordy/

Danielle is from Toronto, Canada. She has been having Cushing's symptoms since May-Aug 2013 when she was 17-18.  A T3 MRI of her pituitary showed an enlargement of the right side of her pituitary gland.

Read more at https://cushingsbios.com/2017/05/18/danielle-undiagnosed-cyclical-cushings/

...The fatigue is a nightmare I don’t even think the word fatigue does what happens justice. My fatigue ( I call it Zombie status) has been assisted with helping out my adrenal glands, because I know at the very least I have an issue due to testing...

Read more at https://cushingsbios.com/2017/04/03/rachel-undiagnosed-bio/

We're thrilled to announce the date for AIU's first stand alone conference for Adrenal Insufficiency. We have some incredible speakers lined up and hope you'll come join us. A list of speakers will be included with registration information in September/October.

Read more at https://cushieblogger.com/2017/07/18/conference-on-adrenal-insufficiency/

#3– DO NOT MAKE IT “PRETTY” OR “NOT SO OBVIOUS”. I can not stress this enough. Ladies I know that you want the cute ones that look like normal bracelets, and have pretty charms, etc on them… THE ENTIRE point of a medical alert bracelet is that someone needs to see it and know that they should look at it. If it looks like a regular bracelet or regular necklace and it isn’t obvious within the first 3 seconds once we get to you and look in the obvious places (neck/wrist). it will NOT get seen. I promise you, we are too busy trying to play the guessing game of why you are not responding, than to take a look at every single piece of regular jewelry and see if it might have a really small inscribing of what is wrong with you. Once again. Make it noticeable. We will see that we need to look at it. Once we do. The guessing game is more than likely OVER. and we can begin to treat you appropriately.

Read more at https://cushieblog.com/2017/07/18/yes-you-need-a-medical-alert-bracelet/

In the past decade, several studies in adults and children have described the risk of pituitary dysfunction after traumatic brain injury (TBI). As a result, an international consensus statement recommended follow-up on the survivors.

More info at https://cushieblog.com/2016/11/21/pituitary-dysfunction-after-traumatic-brain-injury-are-there-definitive-data-in-children/

Listen as Monica (Monicaroni) talks about the challenges she’s faced maintaining her music career while in testing and treatment. Monica was diagnosed with Cyclical Cushing’s. She had pituitary surgery in November 2006. An 8mm encapsulated pituitary tumor was removed. Since there was no post-op crash, she also had a BLA in December 2006.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/05/02/interview-with-monica-pituitary-survivor

This is a Myth. More current research has explored multiple etiologies of Cushing’s. It was once thought that heredity had no influence on the development of Cushing’s Syndrome/Disease and our knowledge was once limited in this sense.

Read more at https://cushieblogger.com/2017/04/18/myth-men1-and-men2-are-the-only-genetic-causes-of-cushings/

The Add Your Bio form has been updated so that it no longer requires Flash. Your information will help others.

I would like to add that if anyone would like to do something for the Cushing's Awareness Challenge but you don't have (or want to have) a blog, why not consider adding your bio to the website this month?

More info at http://www.cushings-help.com/forms/bio.htm

Add your location and diagnosis to our Cushing's World Map.
Helpful Doctor locations are being added to this map, as well

See the Map at http://www.zeemaps.com/pub?group=342449&legend=1&locate=1&add=1

I’m just in the process of getting diagnosed with Cushing’s Syndrome but I just wanted to let you know that virtually everything you described is also happening to me, symptoms wise...

Read more at https://cushingsbios.com/2016/05/04/susanna-n-susanna-nolt-pituitary-bio/

Just wanted to add much love and thanks for everything you have done. You probably don't even know how many lives you have touched, and saved! ...

Read more at https://cushieblogger.com/testimonial/lisa-t-w/

...The MRI was of the pituitary gland, which there was no growth on it at all. The glucose tests were the 5 hour and an 8 hour one, and the insulin levels were checked with them. With all these tests, nothing abnormal showed up. I guess you can see why doctors would give up on me...

Read more at https://cushingsbios.com/2017/04/03/rachel-undiagnosed-bio/

Just wanted to add much love and thanks for everything you have done. You probably don't even know how many lives you have touched, and saved! ...

From https://cushieblogger.com/testimonial/lisa-t-w/

Many of these tips work for Cushing's patients on Growth Hormone, as well.

Read more at https://maryomedical.com/2017/05/19/9-tips-for-safe-travel-with-diabetes/

More than a century ago, Harvey Cushing introduced the term “pluriglandular syndrome” to describe a disorder characterized by rapid development of central obesity, arterial hypertension, proximal muscle weakness, diabetes mellitus, oligomenorrhea, hirsutism, thin skin, and ecchymoses.

Read more at https://cushieblog.com/2017/04/18/diagnosis-and-differential-diagnosis-of-cushings-syndrome/

Request a midnight cortisol salivary test bc it will help rule out medication causing interference with your results.

I take depo and despite strong concerns about taking it with Cushing’s it has not made any difference.

The traits and actions you describe and mention are also related to high cortisol levels...

Read more at https://cushingsbios.com/2017/07/16/suzanne-suzanna-undiagnosed-bio/

Necessary Silence is from the UK.  She is not yet diagnosed with Cushing's but has many symptoms.  She is keeping a video series on Youtube called Medical Adventures.

Read more at https://cushingsbios.com/2017/02/19/necessary-silence-undiagnosed-bio/

Ferol started noticing irregular symptoms in her late 20’s, but more developed since 2001, and rapidly more chronic as time went by. Finally, at her March 2005 physical, she had enough symptoms listed for her GP to start getting the connection to Cushing’s.

She was immediately referred to Dr. Adam Spitz, endocrinologist, with a battery of tests confirmed the initial diagnosis. Her pituitary surgery was performed 09-30-05. She has lost 30+ pounds after reaching a high of 190 prior to surgery.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/05/08/interview-with-ferolv-pituitary-survivor

I was told that I have Cushing's disease, which has caused diabetes, high blood pressure, hunger, weight gain and muscle loss. I was never sick before this, and I did not have any of those things. I am told I have a tumor on my right adrenal gland. I have been to numerous doctors, but most have not been too helpful.

Read more at https://cushieblog.com/2016/10/04/cushings-disease-best-treated-by-endocrinologist/

If left untreated, adrenal insufficiency can cause serious illness or death. But by working with their doctors and nurses, patients can learn how to manage this condition.

Learn more at http://www.cushings-info.com/index.php?title=Adrenal_Crisis!

Good general info for anyone, no matter what symptoms or disease you may have.

Read more at http://www.cushings-info.com/index.php?title=Help_Yourself,_Part_3

(Golden Oldie) Kathryn is from West Yorkshire, England. She had a pituitary adenoma removed and is on replacement of cortisol, thyroxine and soon to be on growth hormone. She was to be having a hip replacement.

Read more at https://cushingsbios.com/2017/05/17/kathryn-kathryn-pituitary-bio/

Getting a diagnosis and dealing with tests can be a very trying time. Here are some words you'll want to know.

Find them at http://www.cushings-help.com/definitions.htm

Macimorelin, a ghrelin agonist, is an orally-active small molecule that stimulates the secretion of growth hormone. Macimorelin has been granted orphan drug designation by the FDA for diagnosis of AGHD. ...

AGHD affects approximately 75,000 adults across the U.S., Canada and Europe. Growth hormone not only plays an important role in growth from childhood to adulthood, but also helps promote a hormonally-balanced health status. AGHD mostly results from damage to the pituitary gland. It is usually characterized by a reduction in bone mineral density, lean body mass, exercise capacity, and overall quality of life as well as an increase of cardiovascular risks.

Read more at https://cushieblog.com/2017/07/19/nda-for-macrilen-for-the-evaluation-of-growth-hormone-deficiency-in-adults/

Recurrence of hypercortisolism in patients after bilateral adrenalectomy for Cushing’s disease is extremely rare.

Read more at https://cushieblog.com/2016/12/21/bilateral-testicular-tumors-resulting-in-recurrent-cushings-syndrome-after-bilateral-adrenalectomy/

Jackie (samsmom) & Jordan: Cushing’s in young people, the fight to diagnose, the amazing gift of a GOOD endocrinologist. Jackie has appeared on Discovery Health discussing her fight for a cure for her younger daughter, as well. Later, the gene responsible for Sam’s illness was found. Her father carried the gene as did her two sisters. Jordan, Jackie’s oldest daughter, has recently had her adrenals removed.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/05/15/interview-with-jackie-samsmon-jordan

A moment in the scheming mind of Professor Pituitary and his sidekick, Dr. Hypothalamus!! And... their minions, the Hormonal Kitties!

View the video at https://cushieblog.com/2017/02/15/an-amusing-look-at-hormones-and-the-pituitary-gland/

Fact: Everyone does NOT have the exact same symptoms. Not all Cushing’s patients are exactly the same. This is one mistake that non experts tend to make in terms of categorizing patients by whether they meet the exact same classic symptoms or not... 

Read more at https://cushieblogger.com/2017/04/20/myth-all-cushings-patients-have-the-exact-same-symptoms/

In this article, hormonal evaluation in a middle-aged woman with diabetes, hypertension and incidentally discovered unilateral adrenal myelolipoma revealed underlying subclinical Cushing’s disease.

Read more at https://cushieblog.com/2017/08/16/adrenal-myelolipomas-as-presenting-manifestation-of-subclinical-cushings-disease-eutopic-acth-dependent-cushings-syndrome/

You have provided an invaluable service to many, many people with Cushing's and other Cushing's-like diseases and syndromes...

...You have been a pioneer in this field and you created an avenue for people to find information, when it was often withheld by the medical profession as proprietary. Thank you so much for all you have done.

Read more at https://cushieblogger.com/testimonial/susan-sdsather/

(1994) Sierra Leonean academic, diplomat, and physician Davidson Nicol passed away. He was the first person to analyze the the breakdown of insulin in the human body.

Synthesized Cortisone

In 1948, Edward Kendall and Philip Hench created the first of the many “miracle drugs,' which were actually synthesized hormones, to treat rheumatoid arthritis and other diseases. Hench and Kendall, who each headed a medical department at the Mayo Clinic in Rochester, Minn., realized that the adrenal glands play an important role in rheumatoid arthritis.

The two noticed that a woman with rheumatoid arthritis had a lessening of symptoms while she was pregnant, and they worked to discover what caused the change. They were able to isolate a hormone in the cortex, or outer part, of the adrenal glands, which they called cortisone.

On Sept. 21, 1948, Hench administered a synthesized version of cortisone developed by Kendall to a patient with arthritis. The two researchers were awarded the Nobel Prize in physiology or medicine in 1950 for their achievements.

This trial is testing the safety and effectiveness of a new investigational drug for the treatment of Cushing's Syndrome. Under the supervision of qualified physicians, cortisol levels and symptoms of Cushing’s Syndrome will be closely followed along with any signs of side effects.

Learn more at http://curec.lk/1X0J6kT

Going back on Growth Hormone? I've been dealing with Cushing's since 1883.  The after effects of pituitary surgery since 1987, kidney cancer since 2006.  It's time I felt better, already!

Read more at https://cushingsbios.com/2017/06/21/maryo-growth-hormone-update/

Unfortunately, problems with the pituitary gland may not always be visible on MRIs or other imaging tests because the pituitary is so small. Endocrinologists who handle hormone therapy frequently are not familiar with brain injuries, and may not make the connection that your brain injury was the cause of the problem.

Read more at http://cushieblog.com/2016/12/21/pituitary-dysfunction-as-a-result-of-traumatic-brain-injury

Craniotomy is worth considering for total tumor removal. Pituitary adenoma apoplexy needs further studies since its different features between children and adults in present study. Specialized care and teamwork of neurosurgeons, pediatricians, and endocrinologists are important.

Read more at https://cushieblog.com/2017/07/20/a-retrospective-review-of-34-cases-of-pediatric-pituitary-adenoma/

Image-guided (navigation-assisted) endoscopic trans-nasal trans-sphenoidal pituitary surgery is what we are about to view being performed in the country (Sri Lanka) only since October this year. For, the 38-year-old patient lying inert on the operating table has a tumour just above her pituitary gland, between the optic nerves and the carotid arteries, making it a difficult operation-site to access. (The pea-size pituitary gland is dubbed the ‘master gland’ as it produces many hormones for the whole body, while also stimulating other glands to produce other hormones.)

Read more at https://cushieblog.com/2016/12/21/into-the-brain-through-the-nostrils-sri-lanka/

Clinicians should be aware that even extremely low doses of topical ocular steroid therapy can cause iatrogenic Cushing's Syndrome.

Read more at https://cushieblog.com/2017/01/21/topical-ocular-glucocorticoid-leads-to-cushings-syndrome-in-9-year-old/

Scalp hair cortisol measurement is an accurate first-line diagnostic test for Cushing’s syndrome in adults and offers several advantages over other first-line diagnostic procedures, according to findings published in the European Journal of Endocrinology.

Read more at https://cushieblog.com/2017/03/21/scalp-hair-cortisol-accurate-in-cushings-syndrome-diagnosis/

Finding may lead to therapies that prevent pituitary tumor recurrence.

Read more at https://www.nih.gov/news-events/nih-researchers-find-potential-genetic-cause-cushing-syndrome

Through these results, we suggest that substrate rewiring may contribute to Cushing's Syndrome disease etiology, and introduce a powerful new paradigm for investigating mutation-induced kinase substrate rewiring in human disease.

Read more at https://cushieblog.com/2016/12/15/cushings-syndrome-mutant-pkal205r-exhibits-altered-substrate-specificity/

Thank the gods, you have saved so many of us xxx

Posted at Thank the gods, you have saved so many of us xxx

thank you so much for sharing your journey through your surgery! How are you feeling now?

Read more at https://cushingsbios.com/2017/02/06/kathleen-foregonelegacy-pituitary-bio/

Natalie Stokes, of Saint Agnes Close in Studley, suffers from Cushing’s disease, a condition where the body produces excess steroid hormones. She had her disability benefits withdrawn eight weeks ago.

Read more at https://cushingsbios.com/2017/04/21/natalie-stokes-pituitary-bio/

Currently recruiting clinical trials at the NIH (National Institutes of Health)

Read more at https://cushieblog.com/2017/05/21/cushings-testing-at-nih/

Hydrocortisone substitution and subsequently a reduction schedule were implemented, after which endogenous cortisol production recovered after 4 months. Physicians should be aware that unregistered herbal medicine can contain potent drugs such as glucocorticoids.

Read more at https://cushieblog.com/2017/04/21/exogenous-cushings-syndrome-due-to-a-chinese-herbalists-prescription-of-ointment-containing-dexamethasone/

Sheryl talked about what it’s been like living with Addison’s after a BLA – for over 30 years.

Read Sheryl’s bio at https://cushingsbios.com/2017/05/21/sheryl-adrenal-patient/

Listen at http://www.blogtalkradio.com/cushingshelp/2008/08/07/interview-with-ashleigh-marinewife05

Diagnosis is based on a review of the patient's medical history, physical examination and laboratory tests. Often x-ray exams of the adrenal or pituitary glands are useful for locating tumors. These tests help to determine if excess levels of cortisol are present and why.

No single lab test is perfect, and usually, several are needed. The three most common tests used to diagnose Cushing's syndrome are the 24-hour urinary free cortisol test, the measurement of midnight plasma cortisol or late-night salivary cortisol, and the low-dose dexamethasone suppression test (LDDST). Another test, the dexamethasone-corticotropin-releasing hormone (dexamethasone-CRH) test, may be needed to distinguish Cushing's syndrome from other causes of excess cortisol.

Read more at http://www.cushings-info.com/index.php?title=Diagnostic_Testing

In simple terms, Adrenal Insufficiency occurs when the body does not have enough cortisol in it. You see, cortisol is life sustaining and we actually do need cortisol to survive. You have probably seen the commercials about 'getting rid of extra belly fat' by lowering your cortisol. These advertisements make it hard for people to actually understand the importance of the function of cortisol.

Read more at http://www.cushings-info.com/index.php?title=Adrenal_Insufficiency

http://www.cushings-help.com/maryos_story.htm

In this '3 in 3' video, Ji Hyun (CJ) Chun, PA-C, BC-ADM, covers 3 types of pituitary disorders and describes useful workups for use by primary care clinicians.

Read more at https://cushieblog.com/2017/03/22/suspecting-pituitary-disorders-whats-next/

Fact: In simple terms, Adrenal Insufficiency occurs when the body does not have enough cortisol in it. You see, cortisol is life sustaining and we actually do need cortisol to survive. You have probably seen the commercials about “getting rid of extra belly fat” by lowering your cortisol. These advertisements make it hard for people to actually understand the importance of the function of cortisol....

Read more at https://cushieblogger.com/2017/04/22/myth-each-person-requires-the-same-dose-of-steroid-in-order-to-survive/

... I have every single symptom of Cushing’s, and I believe it is cyclical and has been happening for about 26 years. It will be what kills me, I fear. Of course, it will be deemed because of obesity and health issues related to it. It is frustrating that doctors just think-it’s so rare, this cannot be what’s wrong. I think it is rarely diagnosed because it us hard to get the tests to give the accurate information. I do not think they will ever diagnose me...

Read more at http://wp.me/p3tb2N-r0

Steve Owens (sowens) returned on May 29, 7:30. His topic was building up support networks and using available agencies to get back to work (rehab, PT/OT, job coaches, etc)...

Listen at http://www.blogtalkradio.com/cushingshelp/2008/05/29/steve-owens-sowens-returns-to-talk-about-support-networks-and-agencies

Love this picture that came up in one of the Cushing's Conference presentations.

See the slide at https://cushieblogger.com/2017/07/22/love-the-slide/

May I ask, what your symptoms were before surgery and what led to the initial discovery of your pituitary adenoma?

Was Cushings a secondary diagnoses?

Read more at https://cushieblog.com/2017/02/04/neurosurgeon-and-otolaryngologist-team-up-to-remove-tumor-in-pituitary-gland/

After your physicians have determined that it is reasonably safe to discharge you from the hospital following transsphenoidal pituitary surgery there are a number of important situations that may arise. Most people feel well after discharge. However, you should be aware of these possible problems, just in case. The following general guidelines are provided to promote your health and safety.

Headache, facial, and sinus pain are not uncommon following pituitary surgery. As you may have noted, the pain and discomfort typically improve on a daily basis following surgery. If you should experience a worsening of your pain or discomfort, please contact your neurosurgeon immediately.

Read more at http://www.cushings-info.com/index.php?title=Pituitary_Post-Op

Cushing’s syndrome of pituitary origin was associated with worse health-related quality of life, especially for physical functioning, social functioning and mental health. In Cushing’s syndrome, health-related quality of life was generally worse during periods of hypercortisolism, but scores for these patients were lower than those of patients with Addison’s disease even during periods of hypocortisolism or eucortisolism, according to the researchers.

Read more at http://addisonshelp.blogspot.com/2017/04/lower-health-related-quality-of-life.html

Because tumors within the skull cannot be palpated, researchers used Magnetic Resonance Elastography (MRE) to assess pituitary tumor stiffness by measuring waves transmitted through the skull into pituitary macroadenomas (PMAs). MRE reliably identified tumors that were soft enough for removal with a minimally-invasive suction technique versus harder tumors requiring more invasive surgery.

Read more at https://cushieblog.com/2017/01/28/imaging-technique-measures-tumor-stiffness-to-aid-surgical-planning/

Patients with adrenal insufficiency may accrue substantial health care costs and have more hospital stays and outpatient visits compared with healthy controls, according to findings published in the Journal of the Endocrine Society.

Read more at https://cushieblog.com/2017/04/23/health-care-expenditure-burden-high-in-adrenal-insufficiency/

The Guest Forum has returned on a trial basis.  At the moment, new guest questions are not moderated.

Check it out at http://cushings.invisionzone.com/index.php?/forum/316-guest-forum/

Not only does the pituitary make its own hormones, but it also triggers hormone production in other glands. The pituitary is aided in its job by the hypothalamus. This part of the brain is situated above the pituitary, and sends messages to the gland on when to release or stimulate production of necessary hormones.

Read more at https://cushieblog.com/2016/12/31/the-pituitary-gland-small-but-mighty/

Heather, pituitary surgery on January 18, 2006 after years of medical problems, June 5, 7:30PM 

Listen at http://www.blogtalkradio.com/cushingshelp/2008/06/05/interview-with-heather-s-pituitary-cushings-survivor

Have you tried a ND? Naturopathic doctor. Mine did some alternative tests and treated the syndrome as a whole instead of what my medical doctor did...

Read more at https://cushingsbios.com/2016/07/07/kali-undiagnosed-bio/

New Doctor added to Dallas, Texas.

See the map at http://www.zeemaps.com/pub?group=342449&legend=1&locate=1&add=1

Clinical trials are research studies that test new treatments to see how well they work. Our Pituitary and Skull Base Tumor Center is leading clinical trials investigating new medical therapies for patients with Cushing’s disease and acromegaly. They are also involved in quality-of-life studies aimed at improving long-term follow-up care for patients who need it.

Read more at http://www.cushie.info/index.php/clinical-trials/214-sloan-kettering-new-york-city-clinical-trials-research