Evaluate whether age-related differences exist in clinical characteristics, diagnostic approach and management strategies in patients with Cushing’s syndrome included in the European Registry on Cushing’s Syndrome (ERCUSYN).
So, I had the Medical Clearance Revision and it was exactly like the Medical Clearance I did just over 30 days ago. It looks like surgery is a go. Thursday, March 9 at 12:15. There’s extra stuff for me to do to prepare, thanks to Cushing’s, the GH deficiency, the Adrenal Insufficiency, the one kidney, etc but I can do it!
We sadly learned that Liz died in March 2012 at the age of 45. She was an active member of the Cushing’s Help Message Boards. She had a photo gallery there. The photo below is from that gallery. Liz in 2002The image at left is from 2002. Liz wrote in her bio: Hello, I’m from Hampton, just outside London. Same old story – at least 6 years of various illnesses […]
Kidney Cancer Awareness is very important to me, because I learned I had it in 2006. I’m pretty sure I had it before 2006 but in that year I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages […]
You may be experiencing high cortisol levels if you’re holding onto weight in your belly or face or have noticed fat deposits in your shoulder or stretch marks on your stomach. Muscle weakness, blood sugar spikes, high blood pressure and hirsutism (unwanted hair growth) may be other red flags.
The National Organization for Rare Disorders (NORD) asks Americans to plan ahead to participate in the Light Up for Rare campaign to raise awareness of rare diseases. NORD is the U.S. sponsor for Rare Disease Day on Feb. 28. The annual awareness day spotlights approximately 7,000 rare diseases that affect more than 300 million people worldwide. More than 2 […]
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
This virtual chat, moderated by Shauna Nelson - MAGIC's Cushing's Division Consultant, is an opportunity for adult members to share stories, discuss treatments and successes that have worked for them.
We are so happy to report Winslow is much better. Though her blood cortisol levels are only reaching 2 despite continuous infusion, her electrolytes have stabilized.
Update 2/12/23 Winslow is still fighting. We are awaiting medical transport to take her to another hospital that can better care for her. The medullary sponge kidney is causing major complications and negatively impacting her body's ability to retain cortisol. She's battling a lot of pain and fighting to get back to us. Please pray and send good vi […]
So much in here is similar to what I went through during my years of being diagnosed with Cushing's. The depression, the weight, the dismissal of everything I knew to be true about what I was feeling.
Update- 2/6/23 As you all know, it is a fight to get cortisol coverage. This morning around 7:30, she went into crisis again. The nurse was alerted that she needed cortisol. The nurse was told by the doctor that Winslow could not have an additional dose and needed to wait until her scheduled 9:00 am dose. Her family members had to intercede to save her life. […]
We describe a patient presenting with a typical clinical picture of Cushing’s Syndrome (CS). Further testing was diagnostic of ectopic Adrenocorticotropic Hormone (ACTH) secretion, but its origin remained occult.
The founder of Adrenal Alternatives Foundation has suffered a severe adrenal crisis yesterday morning. She is alive but fighting for her life. We are unsure of the status of the Foundation at this time. This is the unfortunate reality of this disease, not even the strongest ones are exempt from the toll it takes. Keep fighting, adrenal warriors.
Endocrinologic evaluation revealed grossly elevated 24-hour urinary free cortisol and elevated serum cortisol levels consistent with severe Cushing’s syndrome, and she was started on high-dose ketoconazole.
This trial is testing the safety and effectiveness of a new investigational drug for the treatment of Cushing’s Syndrome. Under the supervision of qualified physicians, cortisol levels and symptoms of Cushing’s Syndrome will be closely followed along with any signs of side effects.
The link below will take you to the trial website where you can review additional information and the patient screener.
Cushing’s and Addison’s Disease. An endocrine NCLEX review on how to differentiate between Cushing’s Syndrome/Disease vs Addison’s and Addisonian Crisis. In this video, I will discuss the pathophysiology, signs & symptoms, and nursing interventions for these endocrine disorders of the adrenal cortex and pituitary glands.
Addison’s Disease and Cushing’s Syndrome/Disease review notes for nursing school and NCLEX exam. In nursing school and for the NCLEX exam, you will need to know how to provide care to a patient with either Addison’s Disease or Cushing’s.
However, many students get these two endocrine disorders confused, but these review notes will help you differentiate between them.
These NCLEX review notes will cover:
Signs and Symptoms of Addison’s Disease vs Cushing’s
Causes of Addison’s Disease and Cushing’s
Nursing Management of Addison’s Disease and Cushing’s
Role of Adrenal Cortex: releases steroid hormones and sex hormones
Role of Aldosterone: regulates blood pressure through renin-angiotensin-aldosterone system, helps retain sodium and secretes potassium (balances sodium and potassium levels).
Role of Cortisol: “STRESS Hormone” helps the body deal with stress such as illness or injury, increases blood glucose though glucose metabolism, break downs fats, proteins, and carbs, regulates electrolytes.
Cushing’s (Syndrome & Disease)
Cushing’s: hyper-secretion of CORTISOL (watch video for clever ways to remember this)
Cushing’s Syndrome vs Cushing’s Disease
Cushing’s Syndrome: caused by an outside cause or medical treatment such as glucocorticoid therapy
Cushing’s Disease: caused from an inside source due to the pituitary gland producing too much ACTH (Adrenocorticotropic hormone) which causes the adrenal cortex to release too much cortisol.
Signs & Symptoms of Cushing’s
Remember the mnemonic: “STRESSED” (remember there is too much of the STRESS hormone CORTISOL)
Skin fragile
Truncal obesity with small arms
Rounded face (appears like moon), Reproductive issues amennorhea and ED in male(due to adrenal cortex’s role in secreting sex hormones)
Ecchymosis, Elevated blood pressure
Striae on the extremities and abdomen (Purplish)
Sugar extremely high (hyperglycemia)
Excessive body hair especially in women…and Hirsutism (women starting to have male characteristics), Electrolytes imbalance: hypokalemia
Dorsocervical fat pad (Buffalo hump), Depression
Causes of Cushing’s
Glucocorticoid drug therapy ex: Prednisone
Body causing it: due to tumors and cancer on the *pituitary glands or adrenal cortex, or genetic predisposition
Nursing Management for Cushing’s Syndrome
Prep patient for Hypophysectomy to remove the pituitary tumor
Prep patient for Adrenalectomy:
If this is done educate pt about cortisol replacement therapy after surgery
Risk for infection and skin breakdown
Monitor electrolytes blood sugar, potassium, sodium, and calcium levels
Addison’s Disease
Addison’s: Hyposecretion of Aldosterone & Cortisol (watch the video for a clever way on how to remember this and not get it confused with Cushing’s)
Signs & Symptoms of Addison’s Disease
Remember the phrase: “Low STEROID Hormones” (remember you have low production of aldosterone & cortisol which are STEROID hormones)
Sodium & Sugar low (due to low levels of cortisol which is responsible for retention sodium and increases blood glucose), Salt cravings
Tired and muscle weakness
Electrolyte imbalance of high Potassium and high Calcium
Reproductive changes…irregular menstrual cycle and ED in men
lOw blood pressure (at risk for vascular collapse)….aldosterone plays a role in regulating BP
Increased pigmentation of the skin (hyperpigmentation of the skin)
Diarrhea and nausea, Depression
Causes of Addison’s Disease
Autoimmune due to the adrenal cortex becoming damaged due to the body attacking itself:
Tuberculosis/infections
Cancer
Hemorrhaging of the adrenal cortex due to a trauma
Nursing Management of Addison’s Disease
Watching glucose and K+ level
Administer medications to replace the low hormone levels of cortisol and aldosterone
For replacing cortisol:
ex: Prednisone, Hydrocortisone
Education: Patient needs to report if they are having stress such as illness, surgery, or extra stress in life ( will need to increase dosage), take medication exactly as prescribed….don’t stop abruptly without consulting with MD.
For replacing aldosterone:
ex: Fludrocortisone aka Florinef
Education: consume enough salt..may need extra salt
Wearing a medical alert bracelet
Eat diet high in proteins and carbs, and make sure to consume enough sodium
Avoid illnesses, stress, strenuous exercise
Watch for Addisonian Crisis
This develops when Addison’s Disease isn’t treated.
In addisonian crisis, the patient has extremely LOW CORTISOL levels (life threatening).
Remember the 5 S’s
Sudden pain in stomach, back, and legs
Syncope (going unconscious)
Shock
Super low blood pressure
Severe vomiting, diarrhea and headache
NEED IV Cortisol STAT:
Solu-Cortef and IV fluids (D5NS to keep blood sugar and sodium levels good and fluid status)
Watch for risk for infection, neuro status (confusion, agitation), electrolyte levels (sodium and potassium, glucose)
The Westin Lombard Yorktown Center
70 Yorktown Center
Lombard, IL 60148
(630) 719-8000
Hotel Room Rates and Reservations
$104 per night ($115.44 with tax) All rooms have refrigerators!! A limited number of roll-a-ways and cribs are available at no cost so if you need one be sure to request one when making your hotel reservation. To make hotel reservations call the Westin at 888-627-9031, and mention The MAGIC Foundation guest room block, or book online at:https://www.starwoodmeeting.com/events/start.action?id=1602112093&key=3A0B99EE
Airline Transportation
Please contact your local travel agent or search the internet for the most reasonable price. Be sure to search often and book early as great fares sometimes become available. The airport of choice is O’Hare (ORD) which is located closer to the hotel. Midway (MDW) is in Chicago also but a distance from the hotel. Please read “hotel transportation” below before booking a flight to Midway.
Hotel Transportation
Free shuttle service is provided by Windy City Limo’s to the Westin Lombard from O’Hare Airport only! The shuttle schedule is as follows: O’Hare Airport to the Westin – Thursday – 11 am, 1 pm, 3 pm, 5 pm and 7 pm Westin to O’Hare Airport – Sunday – Pickups at 8 am, 10 am, noon, 2 pm and 4 pm Shuttle buses will have a MAGIC sign in the window and will pick up at the following O’Hare locations: Terminal 1, Door 1G * Terminal 2, Door 2E * Terminal 3, Door 3G * Int’l Terminal, Door 5E Pick up will be in the middle aisle when you exit the doors from baggage claim. If you are unable to find the shuttle, you can contact Windy City at 866-949-4639. You may choose to arrive at Midway Airport but there is no free transportation available and a taxi will cost approximately $40.
NOTE: If you use a power wheelchair/scooter or other device which cannot be folded and need wheelchair accessible transportation, you can contact Special Needs Chicago at (630) 668-9999 or visit their website to make arrangements online, specialneedschicago.org
“I just can’t seem to lose weight,” the 59-year-old woman said quietly. She had tried everything, she told the young doctor, who was training to be an endocrinologist at Mount Sinai Hospital in New York City. Weight Watchers. Exercise. She ate more vegetables, less fat, then fewer carbs. But still she was gaining weight, 30 pounds during the past seven months, including 12 in the past two weeks. She had never been skinny, she continued, but shapely. In her mid-40s, she started gaining weight, slowly at first, then rapidly. She was considering bariatric surgery, but she wanted to make sure she wasn’t missing something obvious. She had low thyroid hormones and had to take medication. Could her thyroid be off again?
The doctor asked her about symptoms associated with a low thyroid-hormone level. Fatigue? Yes, she was always tired. Changes in her hair or skin? No. Constipation? No. Do you get cold easier? Never. Indeed, these days she usually felt hot and sweaty.
It was probably not the thyroid, the doctor said. She asked if the woman had any other medical problems. She had high blood pressure and high cholesterol — both well controlled with medications. She also had obstructive sleep apnea, a disorder in which the soft tissue at the back of the throat collapse during sleep, cutting off air flow and waking the person many times throughout the night. She had a machine that helped keep her airway open, and she used it every night. She also had back pain, knee pain and carpal-tunnel syndrome. The pain was so bad that she had to retire from her job years before she was ready.
Big, Bigger, Biggest
The doctor examined her, then went to get Dr. Donald Smith, an endocrinologist and director of lipids and metabolism at Mount Sinai’s cardiovascular institute. After hearing a summary of the case, Smith asked the patient if she had anything to add. She did: She didn’t understand why she was getting so much bigger. Her legs were huge. She used to have nice ankles, but now you could hardly see them. Her doctor had given her a diuretic, but it hadn’t done a thing. Everything was large — her feet, her hands, even her face seemed somehow bigger. She hardly recognized the woman in the mirror. Her doctors just encouraged her to keep trying to lose weight.
Worth a Thousand Words
“Let me show you a picture,” she said suddenly and reached over to her purse. The patient’s sister had made a comment recently that led the patient to wonder whether the changes she saw in the mirror were more than simple aging. The patient pulled out a photograph of an attractive middle-aged woman and handed it to Smith. That was me eight years ago, she told him. Looking at the two faces, it was hard to believe they belonged to the same woman. Smith suspected this was something more than the extra pounds.
Two possibilities came to mind. Each was a disease of hormonal excess; each caused rapid weight gain. The first was Cushing’s disease, caused by overproduction of one of the fight-or-flight hormones, cortisol. The doctor looked at the patient, seeking clues. On her upper back, just below her neck, the woman had a subtle area of enlargement. This discrete accumulation of fat, called a buffalo hump, can occur with normal weight gain but is frequently seen in patients with Cushing’s. Do you bruise more easily these days? he asked. Cushing’s makes the skin fragile. No, she said. Did she have stretch marks on her stomach from the weight gain? The rapid expansion of the abdomen can cause the fragile skin to develop dark purple stretch lines. No. So maybe it wasn’t Cushing’s.
Adrenal insufficiency, a rare disorder which is characterized by the inadequate production or absence of adrenal hormones, may be classified as primary adrenal insufficiency in case of direct affection of the adrenal glands or secondary adrenal insufficiency, which is mostly due to pituitary or hypothalamic disease.
Primary adrenal insufficiency affects 11 of 100,000 individuals. Clinical symptoms are mainly nonspecific and include fatigue, weight loss, and hypotension. The diagnostic test of choice is dynamic testing with synthetic ACTH.
Patients suffering from chronic adrenal insufficiency require lifelong hormone supplementation. Education in dose adaption during physical and mental stress or emergency situations is essential to prevent life-threatening adrenal crises.
Patients with adrenal insufficiency should carry an emergency card and emergency kit with them.
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