MaryO
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Status Updates posted by MaryO
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This study was performed to assess how frequently preoperative medical treatment (PMT) was given to Cushing's syndrome (CS) patients across Europe and to investigate differences in preoperative characteristics of patients who receive PMT and those who undergo primary surgery.
Read more at https://cushieblog.com/2018/02/14/preoperative-medical-treatment-in-cushings-syndrome/
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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
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From Tips from LindaP
Things I've learned and wanted to share
By LindaP, with a little help from other Cushing's Message Board members. This is a continuing list, if you want to share.
I have learned so much on this Cushing's journey, much of it from all of you and this site. I wanted to share those learnings, in the event that it helps anyone else.
Obviously - my own opinions here!
My best wishes to everyone on their Cushing's journey.
Read more at http://www.cushings-info.com/index.php?title=Help_Yourself,_Part_2
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The worldwide prevalence of metabolic syndrome in obese people is estimated at about 10%. Conversely, the incidence of undiagnosed Cushing’s syndrome is about 75 cases per 1 million people.
Cushing’s and metabolic syndrome share significant clinical similarities, including obesity, hypertension, and type 2 diabetes. Therefore, “making the diagnosis is the least certain aspect in the care of patients with [Cushing’s],” Dr. Lynn Loriaux wrote.
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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/
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The latest The Cushings Daily! https://t.co/c1LWVb1omn Thanks to @aautomo884 @AcroCommunity @CBSNewYork #hcsm #meded
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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/
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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/
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Myth: “It is MY fault that I got Cushing’s. I did something wrong that caused me to be sick! Fact: This is a very… https://t.co/PW56PUy7Iz
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Myth: “It is MY fault that I got Cushing’s. I did something wrong that caused me to be sick!
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/
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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
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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/
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Cushing’s Diagnosis and Symptoms, part 2
Listen as Robin Smith (staticnrg) and Mary O’Connor (MaryO) co-host Cushing’s message board members calling in to talk about their fight for diagnosis and treatment. The show will be opened with a brief explanation of what Cushing’s is and what the symptoms are.
Listen at http://www.blogtalkradio.com/cushingshelp/2008/03/13/-cushings-diagnosis-and-symptoms-part-2
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The Pituitary Gland: Small But Mighty
Not only does the pituitary make its own hormones, but it also triggers hormone production in other glands. The pituitary is aided in its job by the hypothalamus. This part of the brain is situated above the pituitary, and sends messages to the gland on when to release or stimulate production of necessary hormones.
Read more at https://cushieblog.com/2016/12/31/the-pituitary-gland-small-but-mighty/
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Cushing's Disease or Syndrome?
Cushing’s disease is the most common form of endogenous Cushing’s syndrome. It is caused by a tumor in the pituitary gland that secretes excessive amounts of a hormone called Adrenocorticotropic hormone, or ACTH. Fortunately, this type of tumor is typically benign. Unlike a cancerous (malignant) tumor, a benign tumor stays in its original location and will not spread. After you are diagnosed with Cushing’s syndrome, it is important that your doctor continues the diagnostic process to determine the cause of hypercortisolism.
Read more at http://www.cushings-info.com/index.php?title=Cushing%27s_Disease_or_Syndrome%3F -
We welcome all families living with any rare disease to join us in celebrating their strength and courage, while also recognizing their daily challenges and sacrifices. The interactions between our employees and families provide a first-hand education about living with rare disease and further inspires the work we do for patients and families.
Read more at https://cushieblogger.com/2018/02/08/invitation-to-patient-day-2018/
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The latest The Cushings Daily! https://t.co/Prec1sfzen Thanks to @TomOConnorGroup @lifetimetv #hcsm #worldcancerday
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Medical therapy has an important, albeit secondary, role in patients with Cushing’s syndrome. While medications are not currently used as definitive therapy of this condition, they can be very effective in controlling hypercortisolism in patients who fail surgery, those who are not surgical candidates, or those whose tumor location is unknown. Medical therapies can be particularly helpful to control hypercortisolism in patients with Cushing’s disease who underwent radiation therapy and are awaiting its salutary effects.
Read more at https://cushieblog.com/2016/12/04/medical-therapies-in-cushings-syndrome/
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The latest The Cushings Daily! https://t.co/Lz2Sa3Gp8s Thanks to @Bella_Chanelle @LuvLibertyPeace #hcsm #healthcare
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Primary adrenal insufficiency (PAI) in children is an uncommon, but potentially fatal. The current symptoms include weakness, fatigue, anorexia, abdominal pain, weight loss, orthostatic hypotension, salt craving and characterized by hyperpigmentation.
Read more at https://cushieblog.com/2017/05/06/primary-adrenal-insufficiency-pai/
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Patients with different subtypes of Cushing’s syndrome (CS) have distinct plasma steroid profiles. This could be used as a test for diagnosis and classification, a German study says.
A quick diagnosis of CS is crucial so that doctors can promptly give therapy. However, diagnosing CS is often complicated by the multiple tests necessary not just to diagnose the disease but also to determine its particular subtype.Read more at https://cushieblog.com/2018/01/03/cushing-patients-could-be-diagnosed-subtyped-using-plasma-steroid-levels/
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No universally accepted glucocorticoid replacement dose exists for patients with adrenal insufficiency. Read more… https://t.co/TXQTeRUCGs
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No universally accepted glucocorticoid replacement dose exists for patients with adrenal insufficiency.
Read more at https://cushieblog.com/2016/11/04/hydrocortisone-dosing-for-adrenal-insufficiency/
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Myth: Even Though You Are Chronically Ill, You Should Have The Same Amount Of Energy Every Day…
Christine Miserandino (2010) uses the spoon theory to answer the question, “What does it feel like to be sick?” The spoons serve as a symbol for resources available and energy spent to get through every moment of every day.
