New Alerts - November 30, 2008

Cushing's: More prevalent and hard to diagnose
By Robin(Robin)
New research has shown Cushing’s syndrome to have a substantially higher prevalence than previously thought. Diagnosing and treating Cushing’s syndrome is sometimes just as difficult as it was 70 years ago. ...
Herding Zebras - http://herdingzebras.blogspot.com/

Got letter rom endo...she quit
My crazy, stupid, weirdo endo that I have been seeing, sent me a ltter yesterday saying that she is closing her practice and that she is doing so on Dec 9th. And she was wanting me to do the cortrosyn test...glad I didn't. ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

New research has shown Cushing’s syndrome to have a substantially ...
By survivethejourney@gmail.com (RobinS)
Each makes the case for Cushing's being both more prevalent than first thought and less easily diagnosed with "gold-standard" testing than once thought. Raff and Findling's research, which I've previously quoted in When the Gold ...
survive the journey - http://survivethejourney.blogspot.com/

Alerts - November 29, 2008

Anyone have trouble walking up stairs or getting up from a ...
I know I have gained a bunch of weight and i've become sedentary these last few months but I was wondering if it was lack of excersise or cushings. Can anyone relate or add a suggestion. Im wiped the hell out. Is this a low, a high, ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

I got brave tonight and booked our flight to LA. I keep thinking I ...
By judycolby(judycolby)
I got brave tonight and booked our flight to LA. I keep thinking I'll get a call and one of the appointments will be changed. Now to call for hotel reservations. UCLA and Cedars aren't very close so I decided I'll just try and book ...
Cushing's Family - http://judcol.blogspot.com/

November 23 Alerts

Should I be happy or concerned?
I thought Cushies have almost zilch chance of losing weight. Dr B (thyroid) doesn't think Cushings (doesn't know cyclical Cushings) & wants me to ask Dr T (Cushie doc) exactly how diagnosed. Does this mean I should question diagnosis?
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

From last Spring: A repost...
By MaryO(MaryO)
I still hate Cushing's. It has taken away some of my best friends. I am sitting here crying...I couldn't believe that our friend, Natalie Fay (Natalie65), died yesterday. She was only 42 and had recently had a BLA. ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

New technology for the removal of pituitary and brain tumors
By survivethejourney@gmail.com (RobinS)
Cushing's patients are notorious for having hard-to-find-and-remove pituitary tumors. Factor in hyperplasia and extension into the adjacent sella and sinus areas, and the problem is magnified. This technology is helping surgeons remove ...
survive the journey - http://survivethejourney.blogspot.com/

Endocrine System
By D.K. Mangusan Jr., PTRP(D.K. Mangusan Jr., PTRP)
Endocrine disorders caused by overproduction of hormones may include acromegaly, Cushing's syndrome, hyperparathyroidism, and Graves' disease, which is a form of hyperthyroidism. Top of Page.
Endocrine Health - http://endocrinehealth.blogspot.com/

From last Spring: A repost...
By MaryO(Robin)
I was talking online today with an old friend and Natalie's name came up. It is so heart-wrenching when another Cushie dies :(. I still hate Cushing's. It has taken away some of my best friends. Read the rest of this post. ...
Herding Zebras - http://herdingzebras.blogspot.com/

Not Many Alerts Today

We need to start writing more!

Cushing’s: it’sa family affair
By Kristin
I’ve been in a reflective mood lately. As it gets closer to the holidays, I’m reminded of the good times (and bad ones) my family and I have enjoyed during the Christmas break. It’s the one and only time of year that our family comes ...
My Battle With Cushing's Syndrome - http://www.mybattlewithcushings.com/

November 18 Alerts
By MaryO(MaryO)
Don't know if anyone remembers me from several years ago, I lost a lot of weight on Atkins when I had Cushing's Disease--I stayed on Atkins up until about year ago when my husband moved out--just got into some bad habits (like eating . ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

November 18 Alerts

Lab Values and Proper Lab Processing
I've been looking around and I can't seem to find this... Do we have a list of what lab values should look like, per our knowledgable specialists (like Dr. F)? Also, do we have something that shows how each test should be processed at ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Justin & I went to Denver yesterday to pick up Jess. We timed it ...
By judycolby(judycolby)
Justin & I went to Denver yesterday to pick up Jess. We timed it pretty good and got there about the same time. It sounds like she had a good time even though it was a fast trip. She took a lot of pictures that I want to take a look at. ...
Cushing's Family - http://judcol.blogspot.com/

Caught in the middle....
By survivethejourney@gmail.com (RobinS)
... without a proactive patient (or caregiver) pointing it out. So....what's the answer? I don't pretend to know. I just know I'm willing to do my part to make it better. For more help with Cushing's, visit http://www.cushings-help.com.
survive the journey - http://survivethejourney.blogspot.com/

I'm Back....
By javaaddict
Don't know if anyone remembers me from several years ago, I lost a lot of weight on Atkins when I had Cushing's Disease--I stayed on Atkins up until about year ago when my husband moved out--just got into some bad habits (like eating ...
Low Carb Friends - http://www.lowcarbfriends.com/bbs/

November 17 Alerts

Sleep, tired, nap, Sleep...
By MaryO(MaryO)
Seems like an endless cycle of either sleeping or being sleepy, napping or dozing off. I miss the olden days when we used to have "project weekends" and get so much done, things built, rooms organized, going places, doing things, ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Just how do you define "unremarkable? Geez...
By survivethejourney@gmail.com (RobinS)
Thus, rather than having "unremarkable" biochemical evidence, maybe the testing was "unremarkable". Just my two cents worth... To read more: Mayo Merck NIH. For more help with Cushing's, visit http://www.cushings-help.com.
survive the journey - http://survivethejourney.blogspot.com/

November 16 Alerts
By MaryO(MaryO)
We have to deal with electrolyte issues more often with Cushing's and/or after surgery than the average patient. This article explains the various electrolytes and what having too much or too little can do. For more help with Cushing's, ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

November 16 Alerts

Higher than a kite
I'm having my pit surgey on Dec.1st, and I have been on a cortisol high for weeks. I can't stop my hands from shaking, People look at me like I need a drink! The shaking is also inside my head. I have xanx but it wont stop it. ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

In the news.....
By survivethejourney@gmail.com (RobinS)
We have to deal with electrolyte issues more often with Cushing's and/or after surgery than the average patient. This article explains the various electrolytes and what having too much or too little can do. For more help with Cushing's, ...
survive the journey - http://survivethejourney.blogspot.com/

I've had a strange thing happen a few times in the last many ...
By judycolby(judycolby)
I've had a strange thing happen a few times in the last many months. The first time it happened was when the kids and I were on our way home from Houston after their surgery. We were staying at Susan's house. The kids and I all ended up ...
Cushing's Family - http://judcol.blogspot.com/

Today's Alerts
By MaryO(MaryO)
Traci will discuss the long lasting effects on Cushing's. She writes: "I was undiagnosed for about four years. I was finally got some answers in October of last year. I had one of my adrenal glands removed, it had a mass attached to it. ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

"Cancer is the least of your worries"
By Misty(Misty)
For 1 1/2 months we tested Cortisol levels looking for Cushing's Syndrome. Finally, December 28th, 2007 - we receive a phone call from the Endocrinologist. "Hello" "Is this Haven's Mom?" (they always call and ask that now) ...
My Ride...... - http://hot29.blogspot.com/

Today's Alerts

Mind body balance
By Kristin
I’ve been anxiously waiting two weeks to meet with my new endocrinologist. I had fears of him telling me that something else was wrong with me or that nothing was ever wrong with me. I know, I know - totally irrational. ...
My Battle With Cushing's Syndrome - http://www.mybattlewithcushings.com/

Well, the good news is that both Cedars and UCLA Med Center said ...
By judycolby(judycolby)
Of course now he needs to get another physical, etc. Hope he has time soon to do that. I got the results of Justin's first midnight. It was 6.6. Not quite a 7.5 diagnostic number, but high enough to know that his Cushing's is back. ...
Cushing's Family - http://judcol.blogspot.com/

Interview with Traci
Traci will discuss the long lasting effects on Cushing's. She writes: "I was undiagnosed for about four years. I was finally got some answers in October of last year. I had one of my adrenal glands removed, it had a mass attached to it. ...
Cushie Calendar - http://cushings.invisionzone.com/index.php?act=calendar&calendar_id=1

Cushing's Alerts

Newsletters
By MaryO(MaryO)
I post links to the newsletter archives everywhere, on Facebook, on cushie.info, on cushings-help.org on the message boards. Of all the "hits" links to the newsletters have gotten, only one person has ever commented on them. ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

HELLO ALL, here's my story!
Finally, a friend that was a PCP brought up Cushing's after a thyroid test came back normal and he saw many physical signs of Cushing's (weight gain, straie, buffalo hump, weakness etc) I was referred to an endo and he was skeptical. ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Cushing's Alerts
By MaryO(MaryO)
Melatonin - twice a day, to balance out her hormonal imbalance due to Cushing's. 5. Lysodren - this is compounded exacty for Daphne's needs. It's what keeps her adrenal masses from growing (or slows down the growth). ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

We maybe got some good news yesterday. The cardiologist cleared ...
By judycolby(judycolby)
We maybe got some good news yesterday. The cardiologist cleared Bill for IPSS & AVS. Thanks to everyone for praying for that. I called Cedars & UCLA and asked if I could fax the letter from the cardiologist to them and make sure it was ...
Cushing's Family - http://judcol.blogspot.com/

Cushing's Alerts

Got my MRIs today
Here's the pit. MRIs, a coronal view with and without contrast and the other view. I have my adrenal MRI too, but not sure which views at what cuts are the best to show?
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Cushing's Alerts
By MaryO(MaryO)
Melatonin - twice a day, to balance out her hormonal imbalance due to Cushing's. 5. Lysodren - this is compounded exacty for Daphne's needs. It's what keeps her adrenal masses from growing (or slows down the growth). ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

White Blood Cells and Platelets
By liveonearth(liveonearth)
--Cushings (increased cortisol) DECREASES NEUTROPHILS --overwhelming infx --VIRAL infx --aplastic anemia --radiation --Addisons (decreased cortisol) --chemo --poor nutrition LYMPHOCYTES = B cells, T cells, NK cells NORMALS ...
we live in INTERESTING TIMES - http://liveonearth.livejournal.com/

The Journey Begins...
By Steve(Robin)
I am also a Cushing's survivor. Cushing's is a disease that strikes about 200 people a year in the US. In reality, it probably strikes many more who never know what it making them sick. I am fighting recurrent Cushing's, ...
Herding Zebras - http://herdingzebras.blogspot.com/

Cushing's Alerts

Anyone want to educate this person?
I have to go to work...no time. If you have statistics to help educate this person, it would be nice. Ranting and raving over that won't help us, but logical posts will. ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Daphne's current medications
By nobody@flickr.com (daphne31)
Melatonin - twice a day, to balance out her hormonal imbalance due to Cushing's. 5. Lysodren - this is compounded exacty for Daphne's needs. It's what keeps her adrenal masses from growing (or slows down the growth). ...
Uploads from daphne31 - http://www.flickr.com/photos/syzygy/

Cushing's Alerts
By MaryO(MaryO)
"Like when only months after she graduated from Fashion Careers College in San Diego in 1993, Sanchez was diagnosed with Cushing's Syndrome, a hormonal disorder caused by a benign tumor in her pituitary gland. ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

I had a phone appointment with our endocronologist is Los Angeles ...
By judycolby(judycolby)
I had a phone appointment with our endocronologist is Los Angeles tonight. Some was good, some wasn't. Jess-labs definitely looks like a recurrence, need to get an MRI to see if a tumor shows, if it does he will approve her for a 2nd ...
Cushing's Family - http://judcol.blogspot.com/

Cushing's Alerts

Features | SignOnSanDiego.com | The San Diego Union-Tribune -- 'I ...
By MaryO(MaryO)
"Like when only months after she graduated from Fashion Careers College in San Diego in 1993, Sanchez was diagnosed with Cushing's Syndrome, a hormonal disorder caused by a benign tumor in her pituitary gland. ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

verbal abuse
through every day, having cushings and most likely Acromegaly on top of it. I've lost all there is to Nicole, I don't think or remember things in visual ways. My mind simply does not work. It just really sucks to have to live in this ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Cushing's & Cancer
By MaryO(MaryO)
Cushing's & Cancer: Robin's Cushing's Summary in survive the journey: Blech...: ...Thus, my life is a rollercoaster. And it is for most folks trying to figure out hormone replacements 'manually' instead of being on autopilot like normal ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

Pituitary Alerts

Pituitary Tumor Cause Superabundance Hormone Endocrine Disorders ...
By rayforinfo
Health Blurbs is all about blurbs of information relating ttk health. Yoohll find bits about many asoects of everyday health situations that xre designed to of fer quick insight to possible causes. ...
Online Top Medicine - http://rayforinfo.blogvis.com/

Pituitary Hyperplasia
Apparently, my entire pituitary gland doesn't light up well in a relatively diffuse pattern as he put it. He said that normal glands will light up fairly uniformly throughout and a little less lighting in right and left edges. ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Blech.........
By survivethejourney@gmail.com (RobinS)
As a quick recap, I had transsphenoidal endoscopic surgery to remove a pituitary adenoma almost 2 years ago. Prior to the surgery, I had a very Cushie body with numerous symptoms, and had most of those for a very long time (over 20 ...
survive the journey - http://survivethejourney.blogspot.com/

Cushing's & Cancer

Cushing's & Cancer:
Robin's Cushing's Summary in survive the journey: Blech...:

...Thus, my life is a rollercoaster. And it is for most folks trying to figure out hormone replacements 'manually' instead of being on autopilot like normal people. Just one hormone replacement is not so bad. But factor in several, and it's a different story. Both GH and thyroid replacements need enough cortisol to work correctly. They can cause an already 'low' person to go into AI without sufficient cortisol replacement. Too much cortisol replacement, and one is back into being 'Cushie'. Working one-and-a-half jobs while riding it isn't easy.

Damned disease. I hate it. I used to love a good rollercoaster ride....

Cushing's Alerts

eye lid drooping?
Im very new to this Cushings stuff, and I have yet to find a doctor that will order tests, because it is "too rare" and I "dont look like someone who has Cushings" and I am "just fat, and a little crazy" ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Jackie's tale sets alarm bells ringing
By MaryO(MaryO)
From http://www.guardian.co.uk/commentisfree/2008/nov/08/badscience-addisons-disease. Ben Goldacre; guardian.co.uk, Saturday November 8 2008 00.01 GMT; The Guardian, Saturday November 8 2008; Article history ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Well, it's been about a month since we started this whole process ...
By judycolby(judycolby)
Well, it's been about a month since we started this whole process of getting ready for IPSS & AVS. It was 10-10-08 when Bill got his physical, bloodwork & chest x-ray. Now we're still waiting for stress test results. ...
Cushing's Family - http://judcol.blogspot.com/

Alerts

Five years of weight gain, pelvic pain, no period, etc
I've never been tested for cushings, and no doctor has ever suggested i might have it. i've been to MANY doctors. here are some things i'm afflicted with that fit the cushings profile: - excessive sweating on my palms and feet all my ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Still needing results of Bill's nuclear stress test. It was last ...
By judycolby(judycolby)
Still needing results of Bill's nuclear stress test. It was last Monday. After the test they told him 2 -3 days. This past Monday they told me Tuesday for sure. Yesterday (Tuesday) they told Bill if we hadn't heard anything by Thursday ...
Cushing's Family - http://judcol.blogspot.com/

Here am I
By Steve(Robin)
We have no sports stars to put a face on Cushing's. We have no pink ribbons. We have no simple tests to tell us if we have it. If no one cures us, our lives will be shortened at best and ended at worst. We are the sick who are forgotten ...
Herding Zebras - http://herdingzebras.blogspot.com/

Gimme Shelter: round one
By Sara Piasecki(Sara Piasecki)
The detailed and profusely illustrated case reports are, like all of Cushing's case reports, a course of instruction in themselves." Heirs of Hippocrates, 1163; Courville No. 527; Fulton p.563; Walker No.516; HC 14 ...
Historical Notes from OHSU - http://ohsu-hca.blogspot.com/

All "Us" and One Dog

Feeling railroaded, but I know I'm not alone.
I didn't think there was any way I could have Cushings at first. I was so used to blaming myself completely for all the symptoms, even though some appeared so suddenly and for no apparent reason (extra hair on my face, vertical stretch ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

K-State Veterinarian Discusses Treating Dogs With Cushing's Disease
A new medication is available to treat dogs with Cushing's disease, but pet owners should be prepared for the cost of managing the disease, according to a veterinarian at Kansas State University's College of Veterinary Medicine.
SunHerald.com: Press Releases:... - http://www.sunherald.com/prnewswire/index.rss

Dr. Harvey Cushing
By MaryO(MaryO)
Cushing was the first to discover Cushing's disease that results in rapid weight gain in the face and torso, muscle degradation and insomnia, as well as the weakening of skin tissue, thereby causing it to haemorrhage. ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

My High and Low Cushie Life
By Christina(Christina)
Ludlam felt strongly that I was Cyclical Cushings. (You can read more about Cyclical Cushings in my sidebar). I have been testing ever since. I am now seeing Dr. Wahlen in Ogden, he is closer and when I have surgery, I want it to be ...
Just Another Day in Paradise - http://christinapay.blogspot.com/

Dear Doctor, I can help....
By survivethejourney@gmail.com (RobinS)
Great health care--getting it is getting harder Why primary care doctors are a dying breed Various and sundry linked from KevinMD. For more help with Cushing's, visit www.cushings-help.com.
survive the journey - http://survivethejourney.blogspot.com/

Today's Alerts

Introduction
It was 14.8 mcg/dL and from the reading that I've been sifting over for the past 4 days - anything over 1.8 mcg/dL can possibly be cushing's. Is that correct? I can see that people are tested over and over again before they get a ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Treatment of pituitary dependent Cushing's disease with the multi ...
By MaryO(MaryO)
Abstract Context: There is currently no medical therapy for Cushing's disease that targets the pituitary adenoma. Availability of such a medical therapy would be a valuable therapeutic option for the management of this disorder. ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

The fruit of my Labour
By precocious_bird(precocious_bird)
Cushing was the first to discover Cushing's disease that results in rapid weight gain in the face and torso, muscle degradation and insomnia, as well as the weakening of skin tissue, thereby causing it to haemorrhage. ...
...tHe HoVeL... - http://precocious-bird.livejournal.com/

Overwhelming day...
By ♪♫ Mac ♪♫(♪♫ Mac ♪♫)
I'm also doing the cortisol saliva test the night before to check for Cushing's disease, which will probably be negative, but b/c of PCOS and how it is similar to cushings, they check. They'll also do an u/s (trans vag of course) and ...
Another Day In Mac Paradise - http://themacparadise.blogspot.com/

Google Web Alert for: cushing's

MedlinePlus Medical Encyclopedia: Cushing’s disease
Cushing’s disease is a condition in which the pituitary gland releases too much adrenocorticotropic hormone (ATCH). The pituitary gland is an organ of the ...

Cushing's Alerts

Change in sexual preference
I have been in a relationship with a woman for the past six years who was diagnosed with cushings this past April. She a tumor removed from her pituitary gland in June. She has since been recovering experiencing weight loss, ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Two Days Worth of Alerts
By MaryO(MaryO)
I'm 23 years old and I was recently diagnosed with Cushings. I have read a lot people's stories on here and it seems like I am reading my own. I have always been a chubby kid. Once I hit puberty especially. But the chubbiness was in my ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

Steroids and "cushingoid" appearance
By Havoc
Does anyone have any input from experience or otherwise on how long it takes for the cushing's syndrome like appearance to go away (moon face, fat redistribution etc.)after stopping the dex? I'm hoping it's fairly quickly as people I ...
Cystic Fibrosis - http://forums.cysticfibrosis.com/index.cfm?forumid=1

Two Days Worth of Alerts

Sorry I have to be here :(
I'm 23 years old and I was recently diagnosed with Cushings. I have read a lot people's stories on here and it seems like I am reading my own. I have always been a chubby kid. Once I hit puberty especially. But the chubbiness was in my ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Well, I guess I could of saved my money for a while longer. No ...
By judycolby(judycolby)
Well, I guess I could of saved my money for a while longer. No phone call tonight from Dr. F. I know he doesn't always call on time. But mine was set for sometime between 8:30-9:30 PST, which is 10:30-11:30 CST. ...
Cushing's Family - http://judcol.blogspot.com/

Parathyroid glands removed without incision or scar
By survivethejourney@gmail.com (RobinS)
... procedure to remove parathyroid glands without an incision or scar on the patient's neck." To read more: Robotic Assisted Neck Surgery Spares Incision, Scar. For more help with Cushing's, visit http://www.cushings-help.com.
survive the journey - http://survivethejourney.blogspot.com/

~~~~~~~~~~~~~~~~~~~

WARNING!
I don't know if this reaction happened because my body is just soooo messed up, or if the vaccine may affect people with Cushing's differently. I got my pneumonia and flu vaccine at the same time, so that may have contributed too. ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

OK, time for a new doctor
By Kristin
I haven’t seen my Portland-based endocrinologist since I moved to Seattle more than three months ago. Turns out the 3+ hour trek to Portland from Seattle just wasn’t in the cards for me. Initially, I was uneasy about finding a new ...
My Battle With Cushing's Syndrome - http://www.mybattlewithcushings.com/

Found the results of Jess' second UFC in the fax machine today ...
By judycolby(judycolby)
Found the results of Jess' second UFC in the fax machine today. Guess I missed it yesterday. It was 92 (94?), top of range 34. Two high UFCs & three high midnight serums. No results yet from Bill's stress test. I thought they said about ...
Cushing's Family - http://judcol.blogspot.com/