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/

The researchers concluded that “hydrocortisone granules are an effective treatment for childhood adrenal insufficiency providing the ability to accurately prescribe pediatric appropriate doses.”

Read more at https://cushieblog.com/2020/10/17/hydrocortisone-in-granule-form-effectively-treats-childhood-adrenal-insufficiency/

Twenty-four Hour Urine:

The doctor will give you a gallon collection jug, usually with boric acid in it. The instructions are usually printed on the side. Generally, you urinate first thing in the morning, as usual. after that, you collect the rest of the urine for the next 24 hours in the jug. The directions usually tell you to refrigerate the jug.

Read more at https://cushings.invisionzone.com/topic/56107-testing-24-hour-urine-tests-ufc/

This sounds a lot like what we have been doing for the last 20 years...

HRA Pharma Rare Diseases, an affiliate of global consumer healthcare company HRA Pharma, has announced it is funding an online platform containing information and news on Cushing’s Syndrome.

The ‘Cushing’s Hub’, developed by Springer Healthcare Education, is set to make all information on the rare condition available in one place for medical professionals to access.

Read more at https://cushings.invisionzone.com/topic/55572-hra-pharma-rare-diseases-funds-online-hub-for-cushing%E2%80%99s-syndrome/

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/

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/

Tanya is from Western Australia. She is testing now for Cushing's and has been diagnosed with other health issues including diverticular disease, hypothyroidism, Hashimoto's autoimmune thyroiditis (including multi-nodular gland), secondary hyperparathyroidism, non alcoholic fatty liver, high cholesterol, major depressive disorder and social anxiety and borderline diabetes.

Read more at https://cushingsbios.com/2021/04/19/tanya-tanylou-testing-for-cushings/

Pituitary tumors start in the pituitary gland. They’re usually benign (not cancerous) and rarely spread to other parts of the body. Dr. Borghei-Razavi discusses pituitary tumors and treatments through minimally invasive surgical approaches offered at Cleveland Clinic Florida.

Read more at https://cushings.invisionzone.com/topic/55668-pituitary-tumors-and-treatments/

Statistics are that people who are vaccinated have a 1:1,000,000 chance of dying from COVID, while people who are unvaccinated have a 1:500 chance of dying from COVID.  I think most people would take the 1:1,000,000 risk.  Dr. Friedman has always been a proponent of the COVID-19 vaccine because he is a scientist and bases his decisions on peer-reviewed literature and not social media posts. As we are getting to the stage where the COVID-19 pandemic could end if vaccination rates increase, he feels that it is even more important for people to get correct information about the COVID-19 vaccine. 

Read more at https://cushings.invisionzone.com/topic/55819-covid-info-from-dr-theodore-friedman-dr-f/

There is an absence of online information regarding the risks of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) nasopharyngeal swab (NPS) testing for patients with a history of sinus and/or pituitary surgery, according to a research letter published online March 4 in JAMA Otolaryngology-Head & Neck Surgery.

Read more at https://cushings.invisionzone.com/topic/55573-nasal-swab-test-for-covid-19-risky-for-sinus-surgery-patients/?tab=comments#comment-475826

Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing's Disease), growth hormone insufficiency, panhypopituitary.  I had some issues after my first COVID-19 injection (Moderna) but not too bad.  My second injection will be March 15.

Read more at https://cushingsbios.com/2021/02/19/maryo-covid-vaccine-1/

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/

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

A team of scientists in Montreal and Paris has succeeded in identifying the gene responsible for the development of a food-dependent form of Cushing’s Syndrome, a rare disease affecting both adrenal glands.

In their study published in The Lancet Diabetes & Endocrinology, Dr. Isabelle Bourdeau and Dr. Peter Kamenicky identify in the gene KDM1A the mutations responsible for the development of this unusual form of the disease.

The scientists also show, for the first time, that the disease is genetically transmitted.

Read more at https://cushings.invisionzone.com/topic/56234-identified-the-gene-behind-an-unusual-form-of-cushing%E2%80%99s-syndrome/

Biomarkers in a majority of Cushing’s syndrome patients with surgically induced disease remission showed a high rate of bone turnover and greater bone mineral density one and two years later, a study reports.

Before treatment, these patients were found to have greater bone degradation and poorer bone formation, as can be common to disease-related bone disorders. 

Read more at https://cushings.invisionzone.com/topic/55535-successful-cushing%E2%80%99s-surgery-leads-to-better-bone-density/

Kim is from Durant, OK.  She has had Cushing’s since she was 12 years old and had a right adrenalectomy in March of 2021.

Read more at https://cushingsbios.com/2021/04/20/kim-m-merrykim-adrenal-bio/

People with Cushing’s syndrome are at an increased risk of developing impaired glucose tolerance and hyperglycemia as a result of increased levels of cortisol throughout the body…

Approximately 10% to 30% of people with Cushing’s syndrome will develop impaired glucose tolerance, while 40% to 45% will develop diabetes.

Read more at https://cushings.invisionzone.com/topic/55671-what-causes-blood-sugar-to-rise-in-non-diabetics/

“My absolute favorite MD. Dr. Maas gets to know her patients and is very thorough. Dr. Maas gave me my life back and I will always love her for that. If you want a great Endocrinologist, she’s your best bet.” – Veronica M.

Read more at https://cushings.invisionzone.com/topic/56235-helpful-doctors-wisconsin/

Joanna is from Colorado.  She is testing now.  Her symptoms are buffalo hump, thin arms and thinner legs, fatigue, extreme leg aching, skin feels like its sunburned, high triglycerides, high cholesterol, weight gain, hair growth on face, the list goes on and on and on. 

Read more at https://cushingsbios.com/2021/05/21/joanna-undiagnosed-bio/

I am trying to find a doctor for my mom.  She is located in Monroe, CT.  Would prefer someone in Fairfield or New Haven county, but I am willing to drive further if necessary. 

https://cushings.invisionzone.com/topic/55733-can-anyone-recommend-a-doctor-for-cushings-syndrome-in-connecticut/

Heart disease and infections rank as top causes of death among those with rare disorder

Read more at https://cushings.invisionzone.com/topic/55577-largest-ever-analysis-of-its-kind-finds-cushings-syndrome-triples-risk-of-death/

I have a very very similar experience. I’m scheduled to go to the mayo clinic in Minnesota in July. I live in Massachusetts so it’s a major decision but I am desperate. Like you I’m a very active runner, cycler, CrossFit etc. and I just I started progressively gaining weight, so much slowly in the beginning and then more rapidly in a bit in the past year. Oddly in 2019, around the time the weight game started happening, I broke out in hives all over my body and angioedema of my feet lip trunk. They had me in the ICU because they thought it was anaphylaxis. It wasn’t and nothing was ever determined as far as the cause. How was your Cushing’s ever confirmed and what was your source?

Read more at https://cushingsbios.com/2018/11/10/michelle-michelle-cyclical-cushings-bio/comment-page-1/#comment-58356

In this case report, we describe the management of a patient who was admitted with an ectopic ACTH syndrome during the COVID pandemic with new-onset type 2 diabetes, neutrophilia and unexplained hypokalaemia. These three findings when combined should alert physicians to the potential presence of Cushing’s syndrome (CS).

Read more at https://cushings.invisionzone.com/topic/55676-rapid-control-of-ectopic-cushings-syndrome-during-the-covid-19-pandemic-in-a-patient-with-chronic-hypokalaemia/

With the goal of reducing false positives for adrenal insufficiency (AI), scientists are recommending a new, more precise diagnostic cutoff of 14-15 μg/dL of serum cortisol, rather than the current 18 μg/dL.

Read more at https://cushings.invisionzone.com/topic/55736-bradley-javorsky-md-on-a-new-cortisol-cutoff-for-adrenal-insufficiency-diagnosis/

Have you had a functional doctor check your B12 levels? B12 deficiency can cause the exhaustion you are experiencing.

From https://cushingsbios.com/2019/06/22/melissa-pituitary-bio-3/comment-page-1/#comment-58365

Here's your chance to make your voice heard on Growth Hormone Issues.

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

Angelique L is from the United Arab Emirates. She is a 54 year old woman with no kids. She had a hysterectomy at age 44 and went through the change…

Fast forward to 2019 and she got a very painful and swollen pituitary gland infection on the right side of her face. Admitted to hospital and administered 60mg Prednisone intravenously.

Read more at https://cushingsbios.com/2021/04/24/angelique-l-angelique-undiagnosed-bio/

COVID-19 was found in the adrenal and pituitary glands of some patients who succumbed to the illness, suggesting that these organs might be among the targets for infection.  One of the first highly effective therapies for COVID-19 infection was the use of IV steroid (dexamethasone) supplementation in hospitalized patients in patients requiring oxygen.

A focused search of COVID-19-related health literature shows 85 peer-reviewed papers that have been published in medical literature specifically on the adrenal gland and COVID-19. This literature focuses on three phases of COVID infection that may impact the adrenal gland: the acute active infection phase, the immediate post-infection phase, and the long-term recovery phase.

Read more at https://cushings.invisionzone.com/topic/55619-how-does-covid-19-impact-the-adrenal-gland/

As mentioned in the March update, patients with endocrine problems such as Cushing’s syndrome, Addison’s Disease, hypopituitarism and diabetes have slightly impaired immune systems, making them potentially susceptible for a more severe infection by COVID-19. He would recommend those patients to be especially vigilant about mask-wearing/social distancing and to get a vaccine when it comes out. 

Read more at https://cushieblogger.com/2020/11/23/dr-friedman-covid-19-november-2020-update/

Adrenal insufficiency increases the risk for severe outcomes, including death, 23-fold for children who contract COVID-19, according to a data analysis presented at the ENDO annual meeting.

Read more at https://cushings.invisionzone.com/topic/55579-severe-covid-19-risks-greatly-increased-for-children-with-adrenal-insufficiency/

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/2019/04/23/cushings-myths-and-facts-each-person-requires-the-same-dose-of-steroid-in-order-to-survive/