Friday, November 29, 2013

Lori's Brainiversary

Lori is my good friend who underwent pituitary surgeries 4 and 5 last September 2012.

She is doing very well. Check out her video and see for yourself.

cushingsmoxie sent you a video: "CushieSteph Intro"

cushingsmoxie has shared a video with you on YouTube
My friend Cushie Steph. Go Stephie go!!
CushieSteph Intro
My introductory video for the CushiesUnited channel. Come join us in our Cushie Crusade ( to educated people about Cushing's Syndrome and Cushing's Disease, a rare hormonal disorder in which your body produces too much of the stress hormone: cortisol.
Please also check out my blog:
©2013 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

cushingsmoxie sent you a video: "Cushing's Disease & Acromegaly (brief story of my journey)"

cushingsmoxie has shared a video with you on YouTube
From my sweet friend sweetsmilie1.
Cushing's Disease & Acromegaly (brief story of my journey)
i didn't give much info in this video, but i primarily did it to get over my fear of talking about my illnesses so that i can one day spread awareness globally about my conditions in hopes of saving another precious life from being taken by either of these diseases.
©2013 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

cushingsmoxie sent you a video: "Renée - Cushing's After a Failed Surgery"

cushingsmoxie has shared a video with you on YouTube
My dear friend Renee shares her Cushing's story.
Renée - Cushing's After a Failed Surgery
After meeting with several endocrinologists and internists, Renée was finally diagnosed with Cushing's syndrome. Three months later she would have surgery, and would immediately know that it didn't work. She couldn't get out of bed and felt the same, if not worse than before undergoing surgery. Watch Renée tell her story about diagnosis and her unsuccessful surgery.
©2013 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

cushingsmoxie sent you a video: "Melissa - Cushing's Symptoms & Diagnosis"

cushingsmoxie has shared a video with you on YouTube
My dear friend "Melissa.'
Melissa - Cushing's Symptoms & Diagnosis
Following law school Melissa started to notice changes in her weight and was really exhausted all of the time. She met with her primary care physician, gynecologist, and an endocrinologist to discuss her symptoms and run some tests, but ultimately nothing was found. It wasn't until she did some of her own research that she stumbled upon something called Cushing's syndrome. Watch Melissa tell her story about the symptoms she experienced, and her struggles for a diagnosis.
©2013 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

cushingsmoxie sent you a video: "Phillip - Living with Cushing's Syndrome"

cushingsmoxie has shared a video with you on YouTube
My dear fried Phil.
Phillip - Living with Cushing's Syndrome
Phillip's story is very similar to others that have been diagnosed with Cushing's syndrome. He had difficulty in getting diagnosed, and following surgery his symptoms slowly started to reappear. Watch Phillip describe how Cushing's syndrome has affected his life and the struggle of being re-diagnosed.
©2013 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

What We Know Just Changed: "Adrenal glands produce ACTH"

NOTE:  I wrote this blog entry after taking my sleeping pill for the night. I'll reread this in a few days and catch any errors. Right now, my eyes are blurry and my hands don't want to touch the correct keys. :)

What we know about Cushing's has just changed. I mean, for me, it has changed in a profound way, just in the reading of one press release online tonight.

I have seen many Cushing's patients go through one, two, or more pituitary surgeries once hypercortisolemia is detected.   Once doctors sheepishly diagnose patients with Cushing's, they shepherd us into pituitary surgery.  WHY?  
  • The medical literature indicates that 70% of Cushing's cases are due to a pituitary tumor;
  • Nodules rarely appear on the patient's CT scans of the adrenals that would suggest an adrenal source of Cushing's (syndrome);  
  • These patients can have high ACTH (indicating pituitary source) or normal ACTH, so the likely surgical target is the pituitary;
  • We patients seek a cure from this physical, emotional, and mental H- E- double hockey sticks, and we follow our doctors' advice;
  • It's all we know about Cushing's at this time in history.
Despite all that, unfortunately, patients are often uncured by pituitary surgeries and choose the last resort treatment of bilateral adrenalectomy (BLA) to stop high cortisol at its source and gamble for an improved quality of life.  My minds often drifts back to an informal online survey of Cushing's patients who underwent BLA as treatment indicate that their adrenal glands were "plump" and "dense when removed."  Surgeons note this upon removing the adrenal glands and often include this information into the surgical reports, and pathology reports show that Cushie adrenals often weigh much more than the normal four to six grams each with fat dessicated. It is not uncommon for a patient's adrenal glands to weigh 10 and 15 grams each.  How? Why?  For those I've spoke with online, we don't know the answer.  I personally haven't seen anything written about the size of adrenal glands in relation to high cortisol and Cushing's. These dense behemoth little trouble makers trick us, because they don't appear larger on the CT scans. Radiologist love to say "adrenal glands normal in size" or they run them together with no special mention, such as "kidneys, adrenals, liver, and pancreas appear normal in size".  The surgeon sees the size of the adrenals first, kinda like finding out the gender and weight of new babies, except our surgeon removes adrenal twins, both weighing more than their mamas and papas could safely carry, so they had to come out. The size of the babies are often a surprise to everyone!

Oh, yeah. Back to the press release that says "Adrenal glands produce ACTH."

Today after our Thanksgiving dinner and celebration, I happily turned to my new iPhone 5s, another thing for which I am extremely grateful (as well as communicating with people from my bed while resting).  I stopped in my tracks when I read this press release from the New England Journal of Medicine regarding a genetic link to bilateral adrenal Cushing's.  I couldn't believe my eyes.  

A test? A genetic link?  So this would tell if we patients indeed had Cushing's, which endocrinologists are always insisting we don't really have, and they can screen our family members to get them the care they need more urgently?  WOW. This is good.

It was the first time I had ever seen the words "bilateral adrenal Cushing's."  I have seen Cushing's disease, typically referring to a pituitary source of high cortisol, and Cushing's syndrome, which refers to an adrenal source. What is this "bilateral adrenal Cushing's", asks the person about to undergo a bilateral adrenalectomy?

WHOA. Does this new article due out on Black Friday 2013 really say what I think it says in the press release?  

"The adrenal glands from the same type of patients with two large adrenal glands can produce ACTH, which is normally produced by the pituitary gland." [blogger emphasis] 

Without reading the whole article, this sure sounds to me like these researchers in France might have determined that the adrenal glands produce ACTH, not just cortisol.  I wonder if the production mechanism is similar to an ectopic location such as the lungs or ovary? I can't tell what it means from the press release, which I have pasted below.  We may have to wait until Friday, after Thanksgiving, to see if the NEJM folks are really working or shopping.  

POST THAT ARTICLE!  This way more important than any deal on a waffle iron, a Monsters University DVD, or boots with fuzzy crap on the outside.

We, the Cushing's community, are waiting for the full article!!

Are you carrying adrenal Cushing's syndrome without knowing it?
Genetic research that will be published tomorrow in the New England Journal of Medicine suggests to
Dr. André Lacroix, professor at the University of Montreal, that clinicians' understanding and treatment of a form of Cushing's syndrome affecting both adrenal glands will be fundamentally changed, and that moreover, it might be appropriate to begin screening for the genetic mutations that cause this form of the disease.

"Screening family members of bilateral adrenal Cushing's syndrome patients with genetic mutations may identify affected silent carriers," Lacroix said in an editorial in the Journal. "The development of drugs that interrupt the defective genetic chemical link that causes the syndrome could, if confirmed to be effective in people, provide individualized specific therapies for hypercortisolism, eliminate the current practice of removing both adrenal glands, and possibly prevent disease progression in genetically affected family members."

Adrenal glands sit above the kidneys are mainly responsible for releasing cortisol, a stress hormone. Hypercortiolism means a high level of the adrenal hormone cortisol, which causes many symptoms including weight gain, high blood pressure, diabetes, osteoporosis, concentration deficit and increased cardiovascular deaths.

Cushing's syndrome can be caused by corticosteroid use (such as for asthma or arthritis), a tumor on the adrenal glands, or a pituitary gland that releases too much ACTH. The pituitary gland sits under the brain and releases various hormones that regulate our bodies' mechanisms.

Jérôme Bertherat is a researcher at Cochin Hospital in Paris. In the study he published today, he showed that 55% of Cushing's Syndrome patients with bilaterally very enlarged adrenal glands have mutations in a gene that predisposes to the development of adrenal tumours. This means that bilateral adrenal Cushing's is much more hereditary than previously thought. The new knowledge will also enable clinicians to undertake genetic screening. Hervé Lefebvre is a researcher at the University Hospital in Rouen, France. His research shows that the adrenal glands from the same type of patients with two large adrenal glands can produce ACTH, which is normally produced by the pituitary gland. Hormone receptors are the chemical link that cause a cell to behave differently when a hormone is present. Several misplaced hormone receptors cause the ACTH to be produced in the enlarged benign adrenal tissue. Knowing this means that researchers might be able to develop drugs that interrupt the receptors for these hormones and possibly even prevent the benign tissue from developing in the first place.

More information: 

André Lacroix, M.D., Heredity and Cortisol Regulation in Bilateral Macronodular Adrenal Hyperplasia, New England Journal of Medicine 369;22, November 28, 2013 

Estelle Louiset, Ph.D., Céline Duparc, Ph.D., Jacques Young, M.D., Ph.D., Sylvie Renouf, Ph.D., Milène Tetsi Nomigni, M.Sc., Isabelle Boutelet, Ph.D., Rossella Libé, M.D., Zakariae Bram, M.Sc., Lionel Groussin, M.D., Ph.D., Philippe Caron, M.D., Antoine Tabarin, M.D., Ph.D., Fabienne Grunenberger, M.D., SophieChristin-Maitre, M.D., Ph.D., Xavier Bertagna, M.D., Ph.D., Jean-Marc Kuhn, M.D., Youssef Anouar, Ph.D., Jérôme Bertherat, M.D., Ph.D., and Hervé Lefebvre, M.D., Ph.D., Intraadrenal Corticotropin in Bilateral Macronodular Adrenal Hyperplasia, New England Journal of Medicine 369;22, November 28, 2013. 

Guillaume Assié, M.D., Ph.D., Rossella Libé, M.D., Stéphanie Espiard, M.D., Marthe Rizk-Rabin, Ph.D., Anne Guimier, M.D., Windy Luscap, M.Sc., Olivia Barreau, M.D., Lucile Lefèvre, M.Sc., Mathilde Sibony, M.D., Laurence Guignat, M.D., Stéphanie Rodriguez, M.Sc., Karine. "Are you carrying adrenal Cushing's syndrome without knowing it?." 27 Nov 2013.

Perlemoine, B.S., Fernande René-Corail, B.S., Franck Letourneur, Ph.D., Bilal Trabulsi, M.D., Alix Poussier, M.D., Nathalie Chabbert-Buffet, M.D., Ph.D., Françoise Borson-Chazot, M.D., Ph.D., Lionel Groussin, M.D., Ph.D., Xavier Bertagna, M.D., Constantine A. Stratakis, M.D., Ph.D., Bruno Ragazzon Ph.D., and Jérôme Bertherat, M.D., Ph.D., ARMC5 Mutations in Macronodular Adrenal Hyperplasia with Cushing's Syndrome, New England Journal of Medicine 369;22, November 28, 2013

Provided by University of Montreal

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