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/

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/

I would love to take one of the surveys mentioned in this news article.  My Cushing’s went into “remission” just over 31 years ago but I still feel the effects of having had it.

Pre-Cushing’s I had no problem working a full day, having a piano studio overflowing with students, going out at night, cleaning the house, being a normal mom.

Read more at https://cushieblogger.com/2018/11/10/has-cushings-affected-your-job-or-quality-of-life/

Using immunohistochemistry, researchers determined whether adipose tissue (AT) inflammation in humans is associated with chronic endogenous glucocorticoid (GC) exposure due to Cushing’s disease (CD).

Read more at https://cushieblog.com/2019/02/10/active-cushings-disease-is-characterized-by-increased-adipose-tissue-macrophage-presence/

The plaintiffs were unaware of the steroids in Mario Badescu’s products and used the products on their faces, usually daily, for as long as fourteen years. Many of the plaintiffs allege that they unwittingly became addicted to the steroids such that even a day without use of the Products caused severe and painful withdrawal reactions. Moreover, many of the plaintiffs allege that they suffered from steroid-related ailments while using Control Cream or Healing Cream, including cataracts, glaucoma, mood disorders, heart issues, elevated cortisol levels, adrenal system suppression and Cushing’s Syndrome. Plaintiffs allege that because they did not know they were using steroids at the time, they were unable to inform their physicians about the true source of their injuries and were repeatedly misdiagnosed by their medical providers.

Read more at https://cushieblogger.com/2019/03/10/do-you-use-mario-badescu-skin-care-products/

Sahana is from Mumbai India   Her daughter had many Cushings symptoms starting at 15.  She had laparoscopic adrenal surgery and is now 7 months post-op.

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

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

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/

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/

Adults with Cushing's syndrome, also called hypercortisolism, have a three-fold higher risk of dying from heart disease compared to the general population, according to findings reported by a Swiss research team. Although the researchers found that the risk drops when patients are under care, receiving treatment, and are in remission, the risks don't disappear completely.  

Read more at https://cushieblog.com/2019/03/15/cushings-disease-stresses-your-heart-and-your-mental-health/

 Went to my Endo appt yesterday (prepared) I had a list of all of my symptoms and a few photos of me to show the dramatic changes that my body has gone through over a short period of time. Without my prompting, He is sure that I have Cushings. ...The endo walked in the room, introduced himself, took a good look at me and my pictures and asked me if I had ever heard of Cushings? He told me that I was in good hands and that he would set me up with a great neurosurgeon.

Read more at https://cushieblogger.com/2018/12/15/helpful-doctors-arizona/

Brian is from Pendleton, IN  He had thyroid surgery in October 2015 and a second in December 2015.  He also has had pituitary surgery.  In July 2018 blood tests confirmed his Cushing's is back.

Read his bio at https://cushingsbios.com/2018/12/15/brian-r-mens-bio/

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/2019/04/15/archived-interview-jenn-steroid-induced-iatrogenic-cushings-patient/

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/

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/

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/

...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/

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/

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/

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

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/

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

 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/

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/

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/

...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/

 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 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/

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

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

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

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/

“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/

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/

(1865) American medical practitioner Charles Horace Mayo is born. He is one of the founders of the Mayo Clinic,  a non-profit medical practice and medical research group. He also specialized in nervous system and thyroid surgery.

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/

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/

It's unbelievable but the idea for Cushing's Help and Support arrived 18 years ago tonight.

Read more at https://cushieblogger.com/2018/07/20/were-almost-18/

 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/

These came up in my Facebook Memories from this date in 2009!

Read more at https://cushieblogger.com/testimonial/kind-words-from-a-facebook-post/

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/

In the media: Sharmyn had pituitary Cushing's and is in remission.  This is a compilation of some of her interviews and videos.

Read more at https://cushingsbios.com/2019/03/16/sharmyn-in-the-media/

“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/

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/

Jayne who was diagnosed with Cushing's disease and became pregnant despite her illness, which usually makes women infertile. Jayne was the subject of a Live Interview in the Cushings Help Voice Chat / Podcast series.

Read more at https://cushingsbios.com/2018/11/17/jayne-in-the-media/

Removal of pituitary adenomas by inserting surgical instruments through the nose (transsphenoidal resection) remains the best treatment option for pediatric patients, despite its inherent technical difficulties, a new study shows.

Read more at https://cushieblog.com/2019/06/29/temozolomide-effective-against-cushings-caused-aggressive-tumors/

How are things going now?

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

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/

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/