Hi Alex I am a specialist in rare disease and you need to find yourself a good endocrinologist that will take screening for Cushing’s seriously. Demand an overnight Dexamethasone suppression test to start. Ask to get both a cortisol level in addition to the Dexamethasone level... 

Read more at https://cushingsbios.com/2017/07/07/alex-c-alex-c-undiagnosed-bio/

After Your Transsphenoidal (Pituitary) Surgery

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.

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

Fact: This is a very controversial topic because we don’t like to talk about it. However, many people struggle with this myth.

Read more at https://cushieblogger.com/2017/04/12/myth-it-is-my-fault-that-i-got-cushings/

Unfortunately, adrenalectomy leads to a sharp drop in hormones that are necessary for our bodies. So, post-adrenalectomy glucocorticoid replacement therapy is required for patients.

Hydrocortisone and prednisone are synthetic glucocorticoids that most often are used for glucocorticoid replacement therapy.

Read more at https://cushieblog.com/2018/01/12/study-examines-therapy-options-for-post-adrenalectomy-low-glucocorticoid-levels/

Your Cushing’s site is very valuable to the medical community and should be looked at as a resource of knowledge from people experiencing first hand what the medical community writes.

Read more at https://cushieblogger.com/testimonial/janet-b-2/

Mika is from New South Wales, Australia.  She is not yet diagnosed with Cushing's but thinks she's close.

Read more at https://cushingsbios.com/2018/02/11/mika-undiagnosed-bio/

Using endoscopic or microscopic techniques to surgically remove the pituitary glands leads to similar remission and recurrence rates in Cushing’s disease patients, a review of 24 studies shows.

Read more at https://cushieblog.com/2018/02/12/endoscopic-and-microscopic-surgery-equally-effective-in-cushings-disease/

Corcept, said Korlym’s average cost per patient is $180,000 annually and concedes that “we have an expensive drug. There’s no getting around that.” But, he said, he believes Corcept has a “social contract” to take care of patients and pledged that any patient who is prescribed Korlym will get it regardless of insurance coverage or costs.

The story of Korlym highlights how America’s drug development system can turn an old drug into a new one that treats relatively few — but often very desperate — patients.

Read more at https://cushieblog.com/2018/04/08/korlym-how-an-abortion-pill-turned-out-to-be-a-treatment-for-a-rare-disease/

Relacorilant, an investigational therapy developed by Corcept Therapeutics, may effectively manage the effects of excess cortisol in patients with Cushing’s syndrome, interim data from an ongoing Phase 2 trial show.

In particular, the treatment significantly improved sugar tolerance and the levels of osteocalcin, a bone growth biomarker  commonly suppressed by excess cortisol.

Read more at https://cushieblog.com/2018/05/12/relacorilant-effectively-manages-cortisol-effects-in-cushings-patients/

I have had this weird looking hump at the back of my neck since my late teens and I was a size 9 6 months later im twenty and I went to a size 11 I figured ok I’m still growing and also figured it could have been water weight from the birth control of was taking back then and I continued to take this birth control for years until 2005 as I gained more I figured I stop and the water weight would subside but I was wrong as the years went by i kept gaining but staying at the same weight for a decade and it would increase...

Read more at http://cushings.invisionzone.com/topic/54327-hump-at-back-of-neck/

Karen’s disease started when she was a little girl (7) and she finally got a diagnosis in 2005. She had cycling Cushing’s, Thyroid disease, GH deficiency, and Auto immune Alopecia. She believes she is cured after two Pituitary surgeries. A doctor didn’t advise Vermont’s Karen Nolan (Rooon on the boards) that she might be one of the scant 3.5 per million people diagnosed annually with Cushing’s disease – another Cushing’s patient did.

Read more at https://cushieblogger.com/2017/04/12/karen-nolan-cyclic-cushings-part-2/

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

Some are very sick and believe it can be treated at home, others are low on cortisol and believe they urgently need Emergency Department treatments.  It can be very hard to tell the difference at times.

Read more at https://cushieblog.com/2017/01/02/low-cortisol-or-an-adrenal-crisis-learning-the-difference/

The case report described a woman who was admitted to a specialist clinic after two endocrinologists had failed to diagnose what they suspected was cyclic Cushing’s syndrome.

The woman had complained of fatigue and weight gain over the past four years despite weight loss banding surgery, and declined taking steroid medications. The examination did not reveal particular Cushing’s symptoms.

Read more at https://cushieblogger.com/2017/10/13/would-you-do-this/

Ectopic Cushing’s syndrome can be challenging to diagnose, especially when it comes identifying the problem source. But appropriate hormone management protocols, used in combination with advanced imaging methods, may help physicians identify ectopic ACTH-producing tumors.

...

In half of all Cushing’s patients, ectopic ACTH is produced by small lung cell carcinomas or lung carcinoids (a type of slow-growing lung cancer). But some tumors in the thymus and pancreas also have been found to produce ACTH...

Read more at https://cushieblog.com/2017/12/13/acth-producing-lung-tumors-hard-to-detect-but-may-be-cured-with-surgery/

Robin had Cushing's for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom she found in 2004 said 'endocrine'. She didn't figure it out, either, but at least Robin had a piece of the puzzle and she found cushings-help.com. Robin immediately went into denial and left for several months until she got so sick she knew she had to have help. She had originally sought this PCP because she had been going to all sorts of doctors.

Read more at https://cushieblogger.com/2018/04/10/mary-oconnor-maryo-second-interview-archive-with-robin-smith-staticnrg/

I’m thankful, too, Susan. I’m especially thankful for Mary Kelly O'Connor, who made our meeting each other and other patients possible through her site, www.cushings-help.com. Without all of you and the real advice and advocacy I got there, I don’t think I’d be here. I love my Cushing’s friends! We’ve been down a road nobody else can possibly understand.

From https://cushieblogger.com/testimonial/mary-l/

Ashley's mother has Cushing's and she  just found out she has high cortisol levels, too.

Read more at https://cushingsbios.com/2018/02/12/ashley-d-possible-familial-cushings-bio/

Ectopic ACTH-producing thymic carcinoid tumors are rare, but often behave aggressively with local invasion and distant metastasis. We herein report a case of ACTH-producing thymic typical carcinoid tumor with lymph node metastasis treated by surgery and postoperative radiation therapy.

Read more at https://cushieblog.com/2018/06/13/cushings-syndrome-caused-by-acth-producing-thymic-typical-carcinoid-with-local-invasion-and-regional-lymph-node-metastasis-a-case-report/

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. 

Read more at https://cushieblogger.com/2018/04/13/interview-archive-monica-and-crystal-pituitary-buddies/

These findings highlight the significant burden associated with CD. As current treatment options may not fully reverse the burden of chronic hypercortisolism, there is a need for both improved diagnostic tools to reduce the time to diagnosis and effective therapy, particularly a targeted medical therapy.

Read more at https://cushieblog.com/2017/08/13/the-burden-of-cushings-disease-clinical-and-health-related-quality-of-life-aspects/

I had cyclical Cushing with both my pregnancies…. didn’t know it tho… but my first one was a bad pregnancy….pre eclampsia….low birth weight even tho he was over due….

In the comments at https://cushingsbios.com/2018/04/10/rachelle-l-rachelle-mother-in-law-of-pituitary-patient/

...My husband was diagnosed with Cushing’s disease Nov 2016 and was told the moon face (round swelling of face) and the purple striae (purple stretch marks) were classic symptoms of Cushing’s...

In the comments area of https://cushingsbios.com/2017/10/24/ren-undiagnosed-bio/

Get a free iGive.com account so your favorite cause can earn money every time you shop online. There're over 50,000 causes listed already and if you don't find yours you can add it on the fly. It's free and easy! http://www.igive.com/MaAlgd4
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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

...My dermatologist took one look at me and suggested it was Cushing’s then immediately referred me to an endocrinologist. I have been lucky to have good doctors along the way. I’ve had my pituitary and adrenal glands removed as well as radiation treatment and participated in a drug study. Today I struggle mostly with fatigue, weak muscles, headaches and anxiety...

In the comments area of https://cushingsbios.com/2017/10/24/ren-undiagnosed-bio/

Increases in cortisol secretion, even if mild, induce early heart and blood vessel changes that may increase the risk for cardiovascular disease, according to Italian researchers.

The findings continue to support the role of the hormone cortisol in heart disease, and demonstrate the need for carefully monitoring cardiovascular risk in patients with high levels of the hormone, including those with Cushing’s disease...

Read more at https://cushieblog.com/2018/03/14/mild-cortisol-increases-affect-cardiovascular-changes-linked-to-heart-disease-in-cushings/

Rachelle is from Phoenix, Arizona  Her daughter-in-law has been told the tumor is inoperable and the only form of treatment is mifepristone (the abortion pill). After 5 rounds of IUI, they found out on 3/20 they are pregnant!

Read more at https://cushingsbios.com/2018/04/10/rachelle-l-rachelle-mother-in-law-of-pituitary-patient/

...I do have many of the symptoms of hypothyroidism, including feeling cold all the time. I know I have high testosterone levels, as they have been tested and shown as high, and I have some of the affects of that, too, like increased facial hair and chest hair and deepening of the voice....

In the comment area of https://cushingsbios.com/2018/04/10/rachelle-l-rachelle-mother-in-law-of-pituitary-patient/

Dr. John Lee was a doctor who wrote extensively about progesterone therapy for women in menopause. This is one of his books on amazon: https://amzn.to/2JJ1JWw

Here’s a lecture on the HPA Axis...

Read more in the comments area of https://cushingsbios.com/2018/04/10/rachelle-l-rachelle-mother-in-law-of-pituitary-patient/

To all my Cushie friends who are still dealing with this horrible disease, keep fighting, don’t ever give up, you will get better.  I told a very close friend of mine the other day, if I had the power I would heal everyone you today.  Cushing’s is a horrible disease, and unless you have been through it there is no way anyone could ever understand it. 

Read more at https://cushieblogger.com/2017/11/14/letter-to-cushies/

...Thank God for Mary O and her insight to help us all. Take care. Good health.

Read more at http://cushings.invisionzone.com/topic/54370-help-with-diagnosis/?tab=comments#comment-474008   (Please note that I'm sharing this from the Cushings-Help.com message boards. You must be a logged-in member of that board to read the rest of this post. Log in or register at http://cushings.invisionzone.com )

Jenn (StaceyJenn) was diagnosed with adrenal insufficiency, hypothyroidism, and a host of other ailments in 2001 (candidiasis, intestinal permeability, 22 latent food allergies). Once diagnosed, she was on specially formulated hydrocortisone for 7 years as she was allergic to the fillers in the meds...

Listen at https://cushieblogger.com/2018/04/14/interview-archive-jenn-steroid-induced-iatrogenic-cushings-patient/

Primary bilateral macronodular adrenal hyperplasia (PBMAH) is a disorder characterized by multiple lumps in the adrenal glands and excessive cortisol production. It is a rare cause of Cushing’s syndrome...

...Overall, the study “highlights the importance of early recognition of atypical symptoms of Cushing’s syndrome such as exophthalmos, which would save the patient from harmful effects of excessive cortisol exposure,” the researchers said. 

Read more at https://cushieblog.com/2018/02/14/patients-atypical-cushings-symptoms-lead-to-discovery-of-novel-genetic-mutations/

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

Treatments may include surgery, radiation therapy or medication. Transsphenoidal surgery is surgery performed through the nose and sphenoid sinus (located in the very back part of the nose, just beneath the base of the brain) to remove a pituitary tumor. It can be performed with an endoscope, microscope or both and is a team effort between neurosurgeons and ear, nose and throat (otolaryngology/ENT) surgeons. Radiation therapy uses high-energy x-rays to kill the tumor cells and is recommended when surgery is not an option, if the pituitary tumor remains, or if the tumor causes symptoms that are not relieved by medicine.

Read more at https://cushieblog.com/2017/02/15/what-you-should-know-about-pituitary-tumors/

Currently, pituitary imaging is insufficient to confirm a Cushing’s diagnosis. This is because 70 percent of pituitary adenomas in Cushing’s are microadenomas, which are physically very small. As a result, 40 percent of Cushing’s patients are reported as being healthy.

This means that a Cushing’s diagnosis requires a combination of techniques including clinical symptoms, imaging methods and endocrinological assays that include measures of serum cortisol and ACTH levels.

Read more at https://cushieblog.com/2017/11/15/desmopressin-is-promising-alternative-in-diagnosing-cushings-disease/

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/

Cushing’s syndrome: The abnormal amount of cortisol in the human body causes a condition known as the Cushing’s syndrome. And one of the symptoms of the disorder is hyperpigmentation of the skin.

Read more at http://cushings.invisionzone.com/topic/54341-2-health-conditions-that-can-cause-hyperpigmentation/

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/

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/

The use of intraoperative MRI, especially with transsphenoidal reoperations for invasive and noninvasive pituitary macroadenomas, leads to significantly higher “gross tumor resection” rates. This method prevents additional operations or treatment, such as radiation, because it reduces the number of patients with residual adenoma after surgery. This technology is usually found in specialized tertiary care hospitals but should be considered for reoperation for large pituitary macroadenomas or initial operation for large invasive pituitary macroadenomas.

Read more at https://cushieblog.com/2017/10/18/intraoperative-mri-improves-complete-resection-of-pituitary-macroadenoma/

...It took almost 12 years to finally get my Cushings Syndrome diagnosis because my monthly blood, urine and saliva tests came back one positive/one negative. Finally I had them send all the test results to NIH and they came back with a definite diagnosis....

Read more at https://cushingsbios.com/2018/01/11/janice-not-so-cushie-upcoming-book-installment-1/

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/2018/04/16/myths-and-facts-about-cushings-ufcs-are-the-gold-standard-for-cushings-testing/

Cathy is from Wellington, New Zealand and had the left side of her pituitary gland removed and a BLA. Cathy has been through 2 cycles of IVF fertility treatment and the second one worked. She had a baby girl. Cathy updated her bio in September 2009. She has another new 5mm tumour on the right side of her pituitary gland. She has Nelsons Syndrome and Addison's after having both adrenals removed. They want to give her radiation and she's looking for suggestions.

Read more at https://cushingsbios.com/2017/10/16/cathy-t-pituitary-bio/

Post- traumatic brain injury (anterior) pituitary gland dysfunction (PTPD) is common following traumatic brain injury and clinical and radiological factors at the time of trauma may predict the risk of developing long-term PTPD.

Read more at https://cushieblog.com/2017/09/16/in-the-uk-a-study-to-investigate-the-prevalence-of-pituitary-gland-dysfunction-and-its-risk-factors-following-traumatic-brain-injuries-tbi/

Wright suffered a head injury 17 years ago that damaged his pituitary gland. In 2003, he was diagnosed as having an abnormally low level of growth hormone, which caused him to suddenly become overwhelmed with fatigue.

That’s a potentially life-threatening condition if an episode should occur while driving, walking down stairs or performing some other physical activity.

Wright’s doctor prescribed the self-injected human growth hormone Humatrope, manufactured by Eli Lilly & Co.

Read more at https://cushieblog.com/2017/08/16/growth-hormone-drug-companies-are-growing-less-generous-in-helping-patients-pay-for-meds/

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/

Measuring cortisol levels in saliva multiple times a day is a convenient and useful way to determine the best course of treatment for patients with Cushing’s syndrome, a preliminary study shows.

Read more at https://cushieblog.com/2018/02/16/repeat-checks-of-cortisol-levels-in-saliva-may-improve-use-of-metopirone-as-cushings-treatment/

Based on long-term patient outcomes, researchers were able to identify six categories of common diagnostic and surgical failures. They include:

• persistently high cortisol levels despite the successful removal of lesions
• the failure of tumor resection
• recurrence of disease
• a failure to identify the source of ACTH secretion
• the absence of identifiable lesions during exploratory surgery
• concurrent tumors.

Read more at https://cushieblog.com/2018/05/16/study-describes-6-common-surgical-failures-in-cushings-disease-treatment/

Message board member sherryc presented this PowerPoint at pioneer Pacific College. It took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing's and her journey with this awful disease. 

Read more at https://cushieblogger.com/2017/08/16/cushings-slideshow/

The surgical removal of two-thirds of the pituitary gland is associated with high initial remission rates and low operative morbidity in patients with suspected Cushing’s disease, when no tumor is found on the gland during surgical exploration.

Read more at https://cushieblog.com/2017/12/16/pituitary-gland-resection-may-help-manage-presumed-cushings-patients/

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/

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/2018/04/16/archived-interview-with-terry-g-pituitary-patient/

'It can be challenging to differentiate the milder forms from pseudo-Cushing's states,' which are characterized by altered cortisol production and many of the same clinical features as Cushing's syndrome, according to Roberto Salvatori, MD, the medical director of the Johns Hopkins Pituitary Center, Baltimore, Maryland. These may include alcoholism, obesity, eating disorders, and depression. 'Because Cushing's can cause depression, for example, it is sometimes difficult to determine which came first,' he says. In these states, however, hypercortisolism is believed to be driven by increased secretion of hypothalamic corticotropin-releasing hormone, which is suppressed in Cushing's syndrome

Read more at https://cushieblog.com/2017/08/16/mild-cases-of-cushings-syndrome-present-diagnostic-challenges/

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

Lynne is from the United Kingdom.  Her Cushing's has been caused by corticosteroids. She has been on steroids or 40 years daily.for severe brittle asthma. She has been on prednisolone and IV steroids on hospital admissions for years.

Read more at https://cushingsbios.com/2017/08/18/lynne-jim4lynne-steroid-induced-bio/

The 5-year-old boy’s over-production of adrenal gland hormones led to both symptoms of Cushing’s syndrome and signs that he was starting puberty, the researchers said.

One reason the case was rare is that the average age when Cushing’s develops is 40, doctors say. Another is that epithelial adrenal gland tumors account for only 0.2 percent of all tumors in children, the researchers said.

Read more at https://cushieblog.com/2018/02/17/adrenal-gland-lump-led-to-5-year-old-developing-cushings-starting-puberty/

Patients with recurrent CD showed higher pretreatment ACTH levels and ACTH/cortisol ratio than those who achieved sustained remission. CD patients also exhibited more invasive, atypical and larger tumors, as well as lower postoperative remission and higher recurrence rates.

“Higher ACTH/cortisol ratio might predict poorer prognosis,” the investigators said.

Read more at https://cushieblog.com/2018/03/16/acth-cortisol-ratio-may-be-simple-reliable-test-to-diagnose-cushings-disease/

...I too have Cushings. I have a recurrence of my tumor and I am currently taking medication. You are not alone.

In the comments area of https://cushingsbios.com/2018/04/03/tamara-k-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 https://cushieblogger.com/2018/04/17/archived-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/

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/

 (1873) American gynecologist John Albertson Sampson was born. He studied  endometriosis (a disease where tissue that normally grows within the uterus escapes and grows in another area) and had an artery (Sampson artery) named after him.

“Surgical resection of the causative pituitary adenoma is the first-line treatment of choice for most patients with Cushing’s disease, which leads to remission in greater than 75% of patients if done by an expert pituitary surgeon,” Andre Lacroix, MD, professor in the department of medicine at University of Montreal teaching hospital, and colleagues wrote in the study background. “However, surgery is not always successful, and disease recurrence can occur several years after initial remission, while some patients refuse or are not candidates for surgery. As a result, many patients require additional treatment options.”

Read more at https://cushieblog.com/2017/10/20/long-acting-pasireotide-safe-effective-for-recurrent-cushings-disease/

Rare Disease Awareness Scarf 
Cushing’s Help and Support – Forever Brave Infinity Scarf

$10 from each purchase will be donated to Cushing’s Help and Support

Read more at https://cushieblog.com/2016/04/01/forever-brave-infinity-scarf/

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

I used to carry a print out of this everywhere I go because I find it very soothing.  This print out was in a plastic page saver. On the other side there is a Psalm 116, part of the post from Day Fifteen of the 2018 Cushing's Challenge.  These days, both these readings are available on my phone.

Read more at https://cushieblogger.com/2018/04/16/day-16-cushings-awareness-challenge-2018/

Researchers report a new technique for collecting blood samples from tiny veins of the adrenal glands, called super-selective adrenal venous sampling (ssAVS). The technique can be used to help diagnose diseases marked by excessive release of adrenal hormones, such as subclinical Cushing’s syndrome (SCS) or primary aldesteronism (PA).

Read more at https://cushieblog.com/2017/10/18/blood-sample-from-tributary-adrenal-gland-veins-may-help-to-diagnose-subclinical-cushings-syndrome/

...I hope this is helpful. But this post of mine is very limited. So I suggest you introduce yourself in the I’m new section under welcome and tell us more about yourself and situation. When you scroll down the list of sections you will notice there is a section for people to help answer your questions and that would be a much better place to post things to get more people to react and answer. This is a wonderful caring and sharing site Mary has founded and I know you will find it as helpful as I have. Take Care. Wishing you better health and friendship.

Read more at https://cushingsbios.com/2018/01/11/janice-not-so-cushie-upcoming-book-installment-1/

...have hashi, ON, endometriosis, adrenal failure, and cysts...

Read more at https://cushingsbios.com/2018/01/20/stacy-b-pituitary-adrenal-bio/

In April 2017, the patient arrived at the emergency room with sepsis — a potentially life-threatening complication of an infection — that originated in the gut.

Because ketoconazole had failed to lower cortisol levels, the patient started receiving infused etomidate, an inhibitor of the enzyme 11‐beta‐hydroxylase that prevents cortisol synthesis.

This treatment was stopped one day before the bilateral removal of the adrenal glands as a definitive treatment for the elevated production of cortisol.

Read more at https://cushieblog.com/2018/05/18/etomidate-found-effective-in-severe-cushings-syndrome/

Steve was diagnosed with HyperBeta Adrenergic Syndrome in August, 2005. Doctors thought he might have a pheo, now they’re checking for ACC cancer. Steve also has a newspaper article written about him. Steve’s daughter may also have Cushing’s.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/04/10/interview-with-steve-owens

I found it 11 years ago quite by accident and it not only changed my life but saved my life! Thank you, Mary Kelly O'Connor!  

Read more at https://cushieblogger.com/testimonial/christina-p-5/

It has been two years since your post, and I hope that you are feeling better...

Read more at https://cushingsbios.com/2014/10/23/raveh-i-adrenal-bio/

“Cortisol levels, as represented by late-night salivary cortisol, in Cushing’s disease patients without variable symptoms fluctuate much more widely than many endocrinologists may realize,” Laurence Kennedy, MD, FRCP, chairman of the department of endocrinology, diabetes and metabolism at the Cleveland Clinic, told Endocrine Today. “In patients with recurrent or persistent Cushing’s disease, the late-night salivary cortisol can be normal much more frequently than has been appreciated.”

Read more at https://cushieblog.com/2018/01/18/late-night-salivary-cortisol-often-fluctuates-widely-in-cushings-disease/

#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/

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/2018/04/18/myths-and-facts-about-cushings-men1-and-men2-are-the-only-genetic-causes-of-cushings/