Whether Cushing’s syndrome patients who have an adrenalectomy — surgical removal of one or both adrenal glands — are at a higher risk for VTE (venous thromboembolism) is largely unknown. This is important for post-operative management, to decide whether they should have preventive treatment for blood clot formation.

Read more at https://cushieblog.com/2019/02/16/cushings-syndrome-patients-at-more-risk-of-blood-clotting-problems-after-adrenal-surgery/

 Lili is from Florida.  She is testing for Cushing's due to many symptoms. She shares some of her test results.  Lil has had thyroid cancer

Read more at https://cushingsbios.com/2019/05/19/lili-undiagnosed-bio/

The 11th annual Pituitary Day will take place on October 19, 2019  Patients living with pituitary disorders can hear lectures from our pituitary specialists, see movies of pituitary surgeries and hear from other patients about their experience living with pituitary disease and undergoing surgery.

Read more at https://cushieblogger.com/2019/05/19/register-for-johns-hopkins-pituitary-day-october-19-2019/

The Keynote Speaker will be Maria Fleseriu, MD FACE.  July 13, 2019

Read more at https://cushieblogger.com/2019/06/02/ohio-state-pituitary-patient-symposium/

The signs of the disease are often overlooked. It took 14 years to diagnose Ida with the disease and to start treating it successfully. 

See Ida's Story at https://cushieblogger.com/2019/05/19/video-cushings-syndrome-story-of-a-patient/

Cushing’s disease patients who exhibit nodules or masses in their lungs should be thoroughly investigated to exclude fungal infection with Cryptococcus neoformans, a study from China suggests.

While rare, the infection can be life-threatening, showing a particularly worse prognosis in patients with fluid infiltration in their lungs or with low white blood cell counts in their blood.

Read more at https://cushieblog.com/2018/06/16/cushings-patients-at-risk-of-life-threatening-pulmonary-fungal-infection/

...Two different regions are distinguishable--the cortex, controlled by the pituitary hormone ACTH, produces hormones which maintain body chemistry, and the medulla, which secretes adrenaline and noradrenaline to increase body activity.

See the video at https://cushieblogger.com/2019/03/16/video-how-the-body-works-the-adrenal-cortex-and-medulla/

A “friend” pushed me and I hit my head on a radiator and broke it and a few months after a tumor grew. I’ve been having symptoms ever since. Could I go after here and get compensation for medical care I need now?

in the comments area of http://cushieblog.com/2016/12/21/pituitary-dysfunction-as-a-result-of-traumatic-brain-injury

Terry (Terry) is a long time pituitary Cushing’s survivor. Terry had a pituitary surgery (in LA) in October of 2003 which did not cure her Cushing’s Disease. Then, Dec 13th, 2003 she had her BLA in a Wisconsin hospital. She also had an infection in her sphenoid sinus. It originated at the site of her pituitary surgery from October 2003. She had to be on a lot of antibiotics and narcotic pain relievers. In Sept 2005 the surgeon remove the infection from one area, making another area clear…..

Listen at  https://cushieblogger.com/2019/04/16/archived-interview-terry-g-pituitary-patient/

...Diagnosed in & had surgery in 2010, have been in remission since. Life has been somewhat of a struggle, but great improvements everyday.

In the comments area of https://cushingsbios.com/2019/01/11/stefanie-pituitary-bio/

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/

(1876) American anatomist Edward Anthony Spitzka was born. He published 40 papers on brain anatomy and also performed autopsies on brains.

http://www.cushings-info.com/index.php?title=Pituitary_Hormones

Fact: UFC stands for Urinary Free Cortisol. In layman’s terms this test assesses cortisol by collecting urine for 24 hours. It was once thought that this was the gold standard and the end all and be all in terms of assessing Cushing’s in a patient. What we now know is that this is not necessarily true...

Read more at  https://cushieblogger.com/2019/04/17/cushings-myths-and-facts-ufcs-are-the-gold-standard-for-cushings-testing/

In her bio, Krista added her helpful doctor, Maria Fleseriu

Read more at https://cushieblogger.com/2018/11/19/helpful-doctors-oregon/

 Lili is from Florida.  She is testing for Cushing's due to many symptoms. She shares some of her test results.  Lil has had thyroid cancer

Read more at https://cushingsbios.com/2019/05/19/lili-undiagnosed-bio/

...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/

A noninvasive 7 Tesla MRI scanner at University of Southern California is the first 7T scanner to be used on a patient with Cushing's disease in the U.S., according to a USC news release.  

When a brain tumor was found to be 'MRI-negative' in a 28-year-old female patient, physicians at the USC's Pituitary Center were unsatisfied with the results. After deciding to use the Neuroimaging and Informatics Institute's (INI) new ultrahigh field 7 Tesla MRI scanner to localize the tumor, the patient was officially diagnosed with Cushing's disease and researchers were finally able to be see the tumor that would've otherwise appeared hidden in a standard MRI.  

Read more at https://www.healthimaging.com/topics/neuroimaging/uscs-7-tesla-mri-scanner-first-identify-cushings-disease-us-patient

Were your itching, flushing and elevated BP episodes (cyclic) or there all of the time?

In the comments area of https://cushieblogger.com/2018/05/30/guest-question-is-itching-common-with-cushings-syndrome/

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/

Diana Lynn Alexander Crosley, age 58, of Sidney, passed away peacefully on Wednesday, June 18, 2014, at 10:10 p.m. at her residence surrounded by her loving family. 

Read more at https://cushingsbios.com/2015/06/18/in-memory-diana-crosley-2/

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 https://cushingsbios.com/2018/08/28/we-have-a-new-bio-form/

 Lili is from Florida.  She is testing for Cushing's due to many symptoms. She shares some of her test results.  Lil has had thyroid cancer

Read more at https://cushingsbios.com/2019/05/19/lili-undiagnosed-bio/

Cynthia is from Ruckersville, VA.  She is testing for Cushing's due to many symptoms. She also has  Lupus, Sjgrens, Hypothyroid, High BP, Arthritis and Fibromyalgia. 

Read more at https://cushingsbios.com/2019/05/18/cynthia-m-undiagnosed-bio/

Functional remission did not occur in most patients with Cushing syndrome who were considered to be in biochemical and clinical remission, according to a study published in Endocrine. This was evidenced by their quality of life, which remained impaired in all domains.

Read more at https://cushieblog.com/2018/08/18/cushing-syndrome-results-in-poor-quality-of-life-even-after-remission/

One is from Pittsburgh, PA, i from Udine, Italy snd one from Roanoke, VA

See the MemberMap

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/

#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/

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/

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  https://cushieblogger.com/2019/04/18/archived-interview-monica-pituitary-survivor/

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

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

Krista is from Eugene, OR   She had pituitary surgery in April, 2015.  She has also dealt with thyroid cancer.

Read more at https://cushingsbios.com/2018/11/19/krista-pituitary-bio/

 Lili is from Florida.  She is testing for Cushing's due to many symptoms. She shares some of her test results.  Lil has had thyroid cancer

Read more at https://cushingsbios.com/2019/05/19/lili-undiagnosed-bio/

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/

I dropped by this site because my friend’s daughter has Cushings and I wanted to learn more. Is there any chance that Cushings might be manageable or improvable in a way similar to what Izabella Wentz proposes for Hashimotos?

Can you help?  https://cushingsbios.com/2018/11/17/jayne-in-the-media/

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/

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/

“Medical treatment is a reasonable treatment option for Cushing’s disease patients in case of a contraindication for surgery, a recurrence, or in patients choosing not to have surgery,” Broersen told Endocrine Today. “In case of side effects or no treatment effect, an alternate medical therapy or combination therapy can be considered.”

Read more at https://cushieblog.com/2018/07/19/medical-therapy-reasonable-option-vs-surgery-in-cushings-disease/

Sosei Group Corporation ('the Company'; TSE: 4565), announces that the first healthy subject has been dosed with a novel small molecule HTL0030310 in a Phase I clinical study, marking the start of a new in-house clinical program targeting endocrine disorders, including Cushing's disease...<br />
<br />
HTL0030310 has been designed to modulate the excess release of hormones from adenomas (benign tumors) of the pituitary gland. Highly elevated plasma levels of pituitary hormones result in a number of serious endocrine disorders, including Cushing's Disease.

Read more at https://cushieblog.com/2019/02/20/sosei-heptares-starts-new-clinical-development-program/

A patient with depression developed Cushing’s syndrome (CS) because of a rare ACTH-secreting small cell cancer of the prostate, a case study reports.

Read more at http://cushings.invisionzone.com/topic/54471-rare-prostate-cancer-associated-with-cushing%E2%80%99s-syndrome/

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 https://cushieblogger.com/2019/04/19/archived-interview-monicas-husband-kevin-about-caretakers/

Transsphenoidal surgery — a minimally invasive surgery for removing pituitary tumors in Cushing’s disease patients — is also effective in children and adolescents with the condition, leading to remission with a low rate of complications, a study reports.

The research, “Neurosurgical treatment of Cushing disease in pediatric patients: case series and review of literature,” was published in the journal Child’s Nervous System.

Read more at https://cushieblog.com/2019/01/19/transsphenoidal-surgery-leads-to-remission-in-children-with-cushings-disease/

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

How is your daughter doing? I have an adrenal adenoma and am having a right adrenalectomy soon...

Read more at https://cushingsbios.com/2018/11/14/sahana-sahana-adrenal-bio/

(1865)  English physician George Redmayne Murray was born. He is credited with pioneering the treatment of endocrine diseases, which include thyroid cancer.

Juilliard graduate Samantha Cohn, 34, crawled out a window in her 16th-floor apartment at West 71st Street and Broadway and jumped at 10:10 a.m.

Cohn, who was wearing workout clothes, landed on the sidewalk on Broadway and nearly hit a neighbor, Matt ­Kovary.

Her mother told investigators she had been diagnosed with Cushing’s syndrome, police sources said.

Read more at https://cushingsbios.com/2015/06/20/in-memory-of-samantha-cohn/

 Lili is from Florida.  She is testing for Cushing's due to many symptoms. She shares some of her test results.  Lil has had thyroid cancer

Read more at https://cushingsbios.com/2019/05/19/lili-undiagnosed-bio/

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

I have been struggling with progressive symptoms of extreme fatigue, muscle weakness, increased anxiety and depression, rage, acne, weight gain, and sweating just doing small tasks over the last 3 to 4 years. I also have a very hard time controlling my body temperature.

Read more at https://cushieblogger.com/2019/02/20/can-you-help/

The Endocrine Society today (10/13/16) issued a Clinical Practice Guideline that recommends treating insufficient hormone levels in individuals with hypopituitarism by replacing hormones at levels as close to the body's natural patterns as possible.

Read more at https://cushieblog.com/2016/10/15/endocrine-society-issues-new-guidelines-on-hypopituitarism/

“Our study demonstrates the high sensitivity of [gallium Ga-68 dotatate] in the localization of [ectopic Cushing’s syndrome], for both occult primary tumors and metastatic lesions,” the researchers wrote. “Importantly, the use of [gallium Ga-68 dotatate] impacted clinical management in 64% of patients with [ectopic Cushing’s syndrome] overall.”

The researchers noted that the high cost and limited availability of PET/CT imaging might preclude the widespread use of gallium Ga-68 dotatate for imaging in patients with suspected ectopic Cushing’s syndrome, and that experience with the scans remains limited vs. other imaging studies.

Read more at https://cushieblog.com/2019/05/20/imaging-agent-effectively-detects-localizes-tumors-in-cushings-syndrome/

Post-traumatic stress disorder (PTSD) following Cushing’s disease is a real issue many of us face. However, we don’t have to let it control our lives — there are ways to cope.

Cushing’s changes us both mentally and physically. We become forgetful. We lose strength. We become someone we don’t recognize in the mirror. We lose hair on our heads and gain it everywhere else. We’re always in pain, and we’re always sick, with no end in sight (or at least it feels that way).

Read more at https://cushieblog.com/2018/10/20/finding-ways-to-deal-with-post-surgery-anxieties/

I'm having to rebuild the Cushing's Member Map from old info and the newer bios that are coming in.  Find the new MemberMap here

Add your information - or your doctor's - at https://cushingsbios.com/2018/10/28/we-have-a-new-bio-form/

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

Dr. Krisht earned the honor — sometimes known as the Nobel Prize for neurosurgery — for his cerebrovascular, pituitary and skull base tumor surgery work.

Read more at https://cushieblogger.com/2019/03/21/dr-ali-krisht-receives-2019-herbert-olivecrona-award/

 Lili is from Florida.  She is testing for Cushing's due to many symptoms. She shares some of her test results.  Lil has had thyroid cancer

Read more at https://cushingsbios.com/2019/05/19/lili-undiagnosed-bio/

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

Mutations in USP48 and BRAF genes contribute to the overproduction of adrenocorticotropin (ACTH) hormone by the pituitary gland and consequent development of Cushing’s disease, a study shows, linking these genes to the disease for a first time.

The study, “Identification of recurrent USP48 and BRAF mutations in Cushing’s disease,” published in the journal Nature Communications, also identified a possible treatment for patients with BRAF-related mutations.

...

It is still not clear why some people develop these tumors, but studies have pointed to mutations in the USP8 gene as a possible cause. They are present in 35%–62% of all tumor cases, and influence treatment response and long-term outcomes.

Read more at https://cushieblog.com/2018/11/21/mutations-in-two-genes-usp48-and-braf-linked-to-cushings-disease/

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/

A clear understanding of the pitfalls in the performance and interpretation of adrenal CT can help prevent incorrect and inappropriate investigations, award-winning researchers from a top London facility have found. It's essential to keep aware of the full range of pseudolesions and mimics, they said.

'Evaluation of adrenal tumor function is limited on imaging, but may be inferred from imaging findings,' noted Dr. Gurinder Nandra and colleagues from the department of radiology at St. George's University Hospitals NHS Foundation Trust in an e-poster presentation that received a cum laude award at RSNA 2018 in Chicago.

Read more at https://cushieblog.com/2019/01/21/how-to-avoid-pitfalls-in-interpretation-of-adrenal-imaging/

I remember my first guest post in 2007, was overjoyed to find I wasn't the only medical anomaly lol!

Congratulations to Cushing's Help for coming of age! ?

Posted at https://cushieblogger.com/testimonial/melanie-c/

What do you think?  Are your allergies worse or are you having new ones after being post-op Cushing's?

Read more at https://cushieblogger.com/2018/10/21/what-do-you-think-2/

http://www.cushings-info.com/index.php?title=Pituitary_Hormones

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

This could be me! I need to talk to the person who wrote this. We have so much in common! We need to chat,

Read the original bio at https://cushingsbios.com/2015/06/16/diana-m-dbear12003-adrenal-bio/

 Lili is from Florida.  She is testing for Cushing's due to many symptoms. She shares some of her test results.  Lil has had thyroid cancer

Read more at https://cushingsbios.com/2019/05/19/lili-undiagnosed-bio/

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/

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

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

... 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

Yes absolutely. Post surgery 7 years and I have low tolerance for food and real allergies to things and food.

From https://cushieblogger.com/2018/10/21/what-do-you-think-2/