staticnrg

Do you want to keep the Cushing's Help message boards?  Do you know that MaryO spends thousands out of her own pocket to keep it running?  Do you want to wake up one day and find it gone?   

If the answer to the last one is "no", then take the time to donate what you can each month/quarter/year.   I know I'm not here much anymore since my BLA, but I still care that others have this support.  I would have never found a doctor to help me nor understood this disease if it hadn't been for this site.  There are so many more out there who need them, too.  If you are here, I suspect you do, too.  
 

If you look at the right side of the main page when you login, you will see the donation site and Donations: 801.61 USD || Goal Amount: 2906.00 USD. 

It shows we still need to donate at least $2104.39 for this year.   

So, skip that lunch out at McDonalds or Wendy's and donate the $5 or $6 dollars instead.  PBJ will taste really good that day!    If we all donate just a little bit every month, it will make a difference.

Thank you,

Robin

ALERT DR. F PATIENTS:

The Tuesday night, 9/18/12, clinic, has been moved to Wednesday, 9/19/12.

The Tuesday night, 9/25/12, clinic, has been moved to Monday, 9/24/12.

The Tuesday night, 10/2/12, clinic, has been moved to Wednesday, 10/3/12.

The Tuesday night, 10/9/12, clinic, has been moved to Wednesday, 10/10/12.

Deposits as always will be due at 5PM, the Friday before next week's clinic.

No 10" drive-by phone appointments September 17, 18, 25, and 26.

No 10" drive-by phone appointments October 1, 2, 8 and 9.

I think we can take questions in the BTR chat, too, can't we, MaryO?

Cushings-Help.com Announces The Availability Of An Investigational Drug ForSevere Cushings's Syndrome On a Compassionate Use Basis

November, 2011

We would like to make patients aware that mifepristone, aninvestigational drug that blocks the action of cortisol and is being developedby Corcept Therapeutics Incorporated, is now available on a compassionate usebasis for eligible patients in the United States with Cushing’s syndrome whohave no other treatment options.

Under this compassionate use program, the FDA allowsseriously ill patients who lack satisfactory alternative treatment options touse an investigational new drug that is still under development. Corcept has completed a Phase III trialinvestigating the safety and efficacy of mifepristone in patients withendogenous Cushing’s syndrome. Theinformation from that study has been submitted to the FDA for review of safetyand efficacy.. For information on thetrial results see http://www.corcept.com/cushings_clinical_trials. The company has submitted a New DrugApplication (NDA) seeking approval for this drug.

Patients interested in using mifepristone should consultwith their endocrinologist. Theirendocrinologist, in turn, should contact Corcept for information about thecompassionate use program. Please notethat Corcept will provide information solely to physicians.

Toll Free: 1-877-367-6550

Website: www.corcept.com/cushings_expanded_access

E-mail: EAP@Corcept.com

(Edited/changed at 8:54 PM EST by Dr. F's request. He sent another which changes the wording a tiny bit.)

This post has been promoted to an article

Hi, folks...

Try here: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B3VeLPLQdbGhZGJhODU4YmQtZjgxZS00ZDYwLThjOGItYTY5NmY1YTVlYTdl&hl=en

If you want to download it, go to the left and click "file" and use the download option.

Hugs,

Robin

I don't know if you can view the attached file or not, but that's the full text journal article about what Tofu just posted. Excellent find, Tofu!

The range is 1pM to 10 nM. 2.78 nM = 1ng/ml. I'll do the conversion to units we know (ug/dL) after while. Can't right now...

Robin

C0AN00242A.pdf

Look...it's been done for free cortisol in saliva: http://www.icee-con.org/papers/2008/pdf/O-216.pdf

hugs...

I guess this is one of those times where I'm actually more cynical about the endos than everyone else. I was thinking they wouldn't trust something that was submitted online because it could be so easily tampered with, and they're so resistant to diagnosing Cushing's that they might accuse someone of faking really high reads. I guess that's unreasonable. I mean, I can hack my iPod touch Nike+ mileage reports if I want it to look like I'm running 10 miles a day (there's no point in that) but the concept is the same. I was thinking it would be most helpful in tracking/proving cycles and knowing when to test, but it might actually be better for your endo to see the live data. It may actually save time and money in testing.

 

The thing is, the way I understand how they work, the meter doesn't read the level of the serum glucose, but rather the level of the reaction of the glucose in the blood to the glucose oxidase on the strips. If the reagents they suggested in this assay are sensitive enough, a simple derived function would be all it took to translate the readings on the meter to serum cortisol levels. It may be that "garage level" technology is all it takes to make this work. It also may just be impossible.

 

Forgive my bluntness, but Zhen, do you have any ideas here? (I think there are several obvious reasons why I ask!)

I have ideas, but no time to post them now. As with diabetes, a meter would only be used so the individual could track his/her cycles and cortisol levels. I think how many times I would have loved to have one to decide if my trip to the lab or doing a UFC is worth doing at the time. I think for episodic/cyclic Cushing's patients (which tends to be most of us), it would be a treasure and make it so much easier to figure out when to test. Also, I think it would help us determine if we might have a recurrence, taking away the guessing game and sending us back to our endos.

It's hard to refute a diabetic who shows his/her meter showing high blood sugars. I think that a meter would have to be approved by the FDA to be reputable enough to be accepted, but once that hurdle was passed, it would be used and accepted. Some will resist, obviously. I'm sure much testing to validate the levels the meter shows to lab-tested results would have to happen. Shoot , it woul be awesome if it only did increments of 5ug/dL.... a "less than" or "greater than" kind of thing.

Later....must run...students coming in.

Robin

I'd kind of bumped this idea around, wondering if a Cortisol Oxidase could be formulated to work in on the strips used in Glucometers, and finally came across this abstract. I see it's five years old-does anyone have any idea whatever happened with this? A home test probably wouldn't be convincing to a Doctor for a diagnosis, but it could be useful in mapping cycles, charting them to symptoms for research purposes and knowing when to request a suppression test, as well as ruling out patient suspicions.

Claire Cambell,U of M research to use Liifeascan Glucometer to measure serum cortisol.

I found the email address of the professor under which Ms. Campbell was working and emailed him about our questions/dilemma. I hope he responds.

Hugs,

Robin

I have a friend who retired from Pfizer. He has just been named one of Pfizer's Ambassadors -- he travels to medical conferences all over the country. I will write him a note and send him these links. He's followed my Cushing's journey pretty closely so I think he will take a personal interest in this!

Great, Susan!! Awesome.

There's another potentially profitable avenue to pursue, though where the numbers are huge. We know that a significant % of those diagnosed with type 2 diabetes actually have undiagnosed hypercortisolemia, and in hospitals, this is the group with the worst outcomes and diabetic damage.

 

Testing all DMs with cortisol and glucose meters for screening routinely could prevent/avoid a lot of diabetes damage before it occurs, saving money, and selling cortisol meters.

Professional athelets also test cortisol levels. And Addisonians/CFS sufferers would benefit, too. Their are a lot of folks, and if more knew about it, more would benefit from one.

LisaMK looked into one overseas used on pigs but said they couldn't get it sensitive enough for humans. They tried. Here are two other possibilities, though, I've been following. I sent the info to Dr. F a while back: http://www.cnn.com/2...dex.html?hpt=C1

http://www.technolog.../?nlid=2672&a=f

The second is at UCLA.

I think we need to push someone somewhere about this. Pfizer? They are good about the GH. If enough of us do it, maybe.....

Robin

Thank you folks who have shortened your signatures and taken all the "extra" out of there. I think some of our newer folks haven't seen this. Actually, lots of folks probably haven't, so I thought I'd just post a reminder.

Hugs!

Robin

I'm wondering about Actos. It's also a TZD. I just recently found some research published by JAMA just last week regarding Actos. Here's the link:

 

http://www.medscape.com/viewarticle/562715

 

It's mode of action is a little different than the TZD's they used in the Cedar's Sinai Study, I'm just wondering if it could be helpful.

Hi, Cindy....If anyone will know it's Kristy. I do have this article in my files, though: http://jcem.endojournals.org/cgi/reprint/9...1340.pdf?ck=nck

Bottom line.... " We conclude that short-term therapy with pioglitazone [Actos] therapy is unlikely to modulate the HPA axis in subjects with Cushing's disease. However, further studies with more potent PPAR agonists for longer durations of treatment may be warranted."

Hi....

I agree with Susan. THere is actually quite a bit of research out there, and new coming every day. But do doctors read it? No. That's the big problem. If you click on the links in my signature, you'll see just a few of the resources from research that are out there.

Hugs,

Robin

Well, I'm glad I got my large blue bands!! Thanks for the prompt delivery, Mary!! Hugs!

Robin

Family's Despair over Rare Disease

Exclusive By Benjamin Parkes

THE family of a Chippenham man who died of a rare hormonal disorder have told of the despair his illness caused before it was diagnosed.

An inquest held in Flax Bourton on Tuesday ruled that John Goacher, 51, of Stonelea Close, died of natural causes on May 18 last year, after having surgery at Frenchay Hospital in Bristol.

The operation was intended to ease the symptoms of Cushing's Disease, which included obesity, a rounded face, increased fat around the neck and thinning arms and legs.

Cushing's is a disorder that floods the body with the cortisol hormone. It affects 10 in every million people each year. Most people affected are between 20 and 50 years old.

It gave Mr Goacher high blood pressure, diabetes, muscle weakness and osteoporosis and also reduced his life expectancy to a matter of years if left untreated.

But it was the psychological problems set off by the disease that caused the most anxiety.

Before Cushing's Disease caused a raft of psychological problems, Mr Goacher was a senior reliability engineer for a top secret Government agency and used to travel to London to advise Government scientists on missile weapons.

His wife Linda said: "John's personality completely changed and he did some very strange and destructive things.

"We did not get much help or sympathy at first because we did not know that it was Cushing's.

"His friends and family thought he was being deliberately troublesome and it put a great deal of stress on our family and friends.

"He had violent episodes, smashing down doors and wrecking things, and was eventually sectioned because of his mental problems.

"He used to say he felt like he was in a bubble where everything he did inside it seemed to be normal but to everyone outside the bubble he appeared to be losing his mind.

"I did some research on the internet and discovered that Cushing's might be at the root of it and after a lot of pressure we finally got John referred."

Mr Goacher was eventually diagnosed with a particularly aggressive form of the debilitating disease in February last year.

He then had to face the stress of risky surgery to the malfunctioning pituitary gland inside Mr Goacher's skull.

The operation performed by consultant neurosurgeon Richard Nelson initially yielded positive results but within days Mr Goacher's health took a turn for the worst.

Speaking at the inquest, deputy coroner Anthony Woodburn said: "Without the operation Mr Goacher's life would have come to a distressing end quite quickly.

"An infection occurred in his pituitary gland after surgery which cause the massive bleeding and subsequent heart attack that led to his death.

"The underlying cause of this was an aggressive form of Cushing's Disease from which all the other problems stemmed."

Mrs Goacher said: "I can't help feeling that so much pain could have been avoided if John had been diagnosed earlier."

7:34am Friday 27th April 2007

MaryO, what if you take "pre-orders" for the magnetic ribbons? How many would you need from us to make up one order? We could pay you ahead of time for them. Could we use the PayPal site to do it and email you to let you know that's what we are doing? I'd like to order several myself.

Hugs!

Robin

Hi, Barb....

According to the research I've read, it's the cortisol that makes us night owls...we don't make the cortisol different because we are. I've posted a lot about the variation in diurnal rhythm and if you do a search with "diurnal" you'll see a lot. If you do another search with "circadian", you'll find other things.

Hugs!

Robin

Lots of good information! However, it's a very conservative diagnosis site/chart, so be wary. For instance, if one suppresses on the dex, it automatically rules out Cushing's. No salivaries are mentioned, no 10 hour UFC's, and late-night serums aren't really mentioned, either. It does an excellent job of explaing the types of tests and how they are used. And as someone else mentioned, especially good talking about finding WHERE a tumor is once one is diagnosed.

Hugs!!

Robin

For those of you who have high levels of ACTH, this article may explain some things that are going on:

Increased ERK phosphorylation in the adrenal gland in response to chronic ACTH treatment

Full article available temporarily.

Increased ERK phosphorylation in the adrenal gland in response to chronic ACTH treatment

Jorge G Ferreira1,3, C?lia D Cruz2,3, Delminda Neves1,3 and Duarte Pignatelli1,3

1Laboratory of Molecular Cell Biology, Faculty of Medicine of Porto, Porto, Portugal

2Institute of Histology and Embryology, Faculty of Medicine of Porto, Porto, Portugal

3Instituto de Biologia Molecular e Celular (IBMC), Porto, Portugal

 

(Requests for offprints should be addressed to D Pignatelli)

 

(Current address of D pignatelli is at IPATIMUP, Porto, Portugal)

 

--------------------------------------------------------------------------------

 

Abstract

ACTH released from the pituitary acts through activation of cAMP/PKA in adrenocortical cells stimulating steroidogenesis. Although ACTH was originally thought to have anti-proliferative effects on the adrenal, recently it has been described that it could also have proliferative effects acting via other signalling cascades. This is also relevant in humans given the increased levels of ACTH occurring together with adrenal cortex hyperplasia observed in Cushing's disease (CD) and possibly in other situations such as chronic stress. One of the signalling pathways regulating cell proliferation is the ERKs pathway. ERKs are members of the MAPK family of cascades. They are activated by extracellular stimuli such as growth factors and mitogens, become phosphorylated via MEK1/2 and regulate a diversity of cellular processes such as proliferation and differentiation. Until now no study addressed the effects of chronic ACTH administration on the activation of ERKs in vivo.

 

Objectives: Using rats submitted to different ACTH dosages as well as variable durations, we determined if ACTH induced ERKs activation and by establishing a parallelism with Proliferating Cell Nuclear Antigen (PCNA) expression we aimed to demonstrate a role of ACTH induced ERKs activation in cell proliferation. Blood was collected for hormonal analysis and the role of ACTH induced ERKS activation in the stimulation of steroidogenesis was also studied. We confirmed that ACTH increased adrenal weight and Corticosterone levels when compared with Control or Dexamethasone-treated animals. We also demonstrated that ACTH increases ERKs activation and PCNA expression in a time- and dose-dependent manner. When ERKs activation was blocked by the use of a specific MEK inhibitor (PD98059), there was a decrease in ACTH-induced Corticosterone release and PCNA expression. We conclude that chronic ACTH induces ERKs activation and that this plays an important role in the induction of cell proliferation as well as steroidogenesis.

 

Journal of Endocrinology

Hi! I've missed a lot of posts lately, too, so I haven't seen this elsewhere. This is VERY INTERESTING!! Thank you for sharing it.

Hugs!!

Robin

I'm with Dawn.... How'd they know what was what? I'm glad my eyes will be covered.... (I know...I know...I'll be out)

Thanks, MaryO!!

Robin

Excellent article! It is an ugly disease. Not so much for what it makes us look like, but for what it does to our lives and the difficulties of diagnosis. This was well-written. The author took some time to get good information. Thanks, Mary!!

Robin

Doctors using Google to diagnose illness....

 

The internet search engine Google has added another impressive string to its bow - by helping doctors diagnose illnesses, according to a new study.

 

Researchers found that almost six-in-10 difficult cases can be solved by using the world wide web as a diagnostic aid.

 

Doctors fight disease by carrying about two million facts in their heads but with medical knowledge expanding rapidly, even this may not be enough.

 

Misdiagnosis is still a common occurrence in the medical profession despite all the tools available such as the blood tests and state of the art scanning equipment.

 

Studies of autopsies have shown doctors seriously misdiagnose fatal illnesses about 20 per cent of the time.

 

So millions of patients are being treated for the wrong disease. And the more astonishing fact may be that the rate has not really changed since the 1930s.

 

So a team at the Princess Alexandra Hospital in Brisbane identified 26 difficult diagnostic cases published in the New England Journal of Medicine last year, including obscure conditions such as Cushing's syndrome and Creutzfeldt-Jakob disease.

 

They selected three to five search terms from each case and did a Google search while blind to the correct diagnoses. Google gives users quick access to more than three billion medical articles.

 

The researchers then selected and recorded the three diagnoses that were ranked most prominently and appeared to fit the symptoms and signs, and compared the results with the correct diagnoses as published in the journal.

 

Google searches found the correct diagnosis in 15 (58 per cent) of cases. Respiratory and sleep physician Dr Hangwi Tang, who led the study, said: "Doctors adept at using the internet use Google to help them diagnose difficult cases.

 

"As described in the New England Journal of Medicine, a doctor astonished her colleagues including an eminent professor by correctly diagnosing IPEX (immunodeficiency, polyendocrinopathy, enteropathy, X linked) syndrome.

 

She admitted that the diagnosis 'popped right out' after she entered the salient features into Google."

 

The researchers, whose findings are published online by the British Medical Journal, suggest Google is likely to be a useful aid for conditions with unique symptoms and signs that can easily be used as search terms.

 

But they stress the efficiency of the search and the usefulness of the retrieved information depend on the searchers' knowledge base.

 

Dr Tang added: "Doctors and patients are increasing proficient with the internet and frequently use Google to search for medical information.

 

"Twenty five million people in the United Kingdom were estimated to have web access in 2001, and searching for health information was one of the most common uses of the web.

 

"Computers connected to the internet are now ubiquitous in outpatient clinics and hospital wards. Useful information on even the rarest medical syndromes can now be found and digested within a matter of minutes.

 

"Our study suggests that in difficult diagnostic cases, it is often useful to 'google for a diagnosis'. Web based search engines such as Google are becoming the latest tools in clinical medicine, and doctors in training need to become proficient in their use."

Well, well, well............

Hugs!!

Robin

I got a response already!!

Robin:

Thanks for your interest. Unfortunately, we do not yet have a breath test for Cushing's disease, but who knows what the future might bring?

Best regards, and good luck!

Michael

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Michael Phillips MD, FACP

Menssana Research, Inc

Business office: 1 Horizon Road, Suite 1415,

Fort Lee, NJ 07024-6510, USA

Telephone/fax: 201 886 7004

 

Breath Research Laboratory,

EDC III, 211 Warren Street,

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Phone: 973 643 5464 Fax: 973 643 6464

 

Clinical Professor of Medicine,

New York Medical College, Valhalla, NY

e-mail: mphillips@menssanaresearch.com

website: www.menssanaresearch.com

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