$200 PAID Marketing Research Opportunity

Advanced Focus is a national marketing research firm based in New York.

We are currently working on a study nationwide for women, ages 25-45 years, diagnosed and being treated for Cushing's Disease.  This study will be held entirely online at the beginning of August.  All participants will receive $200 for their time.

Thank you for your time,

Cathy

Executive Medical Recruiter

212-696-4455

Ext. 2048

www.advancedfocus.com

Notes on the Magic Foundation Cushing's Conference, 2012

Here are links to all the posts in order, although some still need to be edited.  I posted these directly from the meeting hall with no rereads or rewrites.  If anyone has anything to add, edit or delete, please let me know!

• Magic Conference: Understanding your Pituitary Gland in Health and Disease

Dr. Frohman will present an overview of the pituitary gland. He will cover general aspects of pituitary function and testing and also review the types of pituitary disease that occur, including pituitary tumors and Sheehan’s Syndrome. Many people ask and wonder if Growth Hormone Deficiency can be inherited. Dr. Frohman will also briefly address that concern.

http://cushingshelp.blogspot.com/2012/07/magic-conference-understanding-your.html

• Magic Conference: Testing and Diagnosis Process for Pituitary Disorders

Pituitary disorders can be difficult to diagnose in many cases. Dr. Salvatori will discuss the different testing and diagnostic procedures to determine the pituitary disorder. MAGIC receives many calls asking about diagnostic procedures. This segment will be helpful in understanding what procedures are used today to provide the best treatment available. 

http://cushingshelp.blogspot.com/2012/07/magic-conference-testing-and-diagnosis.html

• Magic Conference: Managing Medications and Aftercare of Treatments

It is crucial to monitor your treatments and aftercare of treatments when living with a pituitary disorder. Dr. Salvatori will discuss the importance of these issues so you will be aware of how to manage your pituitary disorder. A simple diagnosis does not mean that medications may be altered or changed in the future. This segment will assist you with information on how to manage your future.

http://cushingshelp.blogspot.com/2012/07/magic-conference-managing-medications.html

• Magic Conference: Cushing’s Disease, Are We Closer to Medical Therapies?

A significant proportion of patients with Cushing's Disease are not cured by primary surgical treatment, the disease is prone to relapse and significantly damages quality of life. Adjuvant radiotherapy is an increasingly unattractive option for clinicians who wish to spare their patients hypopituitarism and other potential complications. Some pharmacological options are currently available but tend to have dose-limiting side effects. New agents recently approved or under investigation will be discussed and strategies to select the optimal drug or drug combination for individual patients reviewed.

http://cushingshelp.blogspot.com/2012/07/magic-conference-cushings-disease-are.html

• The Trip So Far...

MaryO's personal experiences and thoughts

http://cushingshelp.blogspot.com/2012/07/the-trip-so-far.html

• Cushing's Help Turned Twelve During the Conference!

Twelve  years ago I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself.  We decided that I could.

This website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’ve made  some helpful differences in someone else's life.

http://cushingshelp.blogspot.com/2012/07/today-we-twelve.html

• Magic Conference: Treating Cushing’s Disease with Surgery: Ways of Achieving a Cure

Dr. McCutcheon will discuss the ways of treating Cushing’s disease from the surgical perspective, including the different ways of getting to the pituitary, the chances of success, and the potential complications. In addition, special nuances and pitfalls ofsurgery in Cushing’s (as opposed to other types of pituitary tumor) will be addressed. 

http://cushingshelp.blogspot.com/2012/07/magic-conference-treating-cushings.html

• Phil and the Zebra Undies

Dr. McCutcheon is a surprise participant in a gift to Phil.

http://cushingshelp.blogspot.com/2012/07/phil-and-zebra-undies.html

• Real Talk: Psychological Process of Illness, part 1

This Segment will be broken into two sections. Part I will be provide an open opportunity for participants to ask relevant questions around the emotional/mental issues in living with a chronic illness. Participants will be able to openly talk about depression, anxiety, trauma, and other processes that occur when living illness.

Due to confidentiality issues, most of this segment is not shared.

http://cushingshelp.blogspot.com/2012/07/real-talk-psychological-process-of.html

• Real Talk: Psychological Process of Illness, part 2

Part II will focus on seeing ourselves as survivors of illness and the process of staying empowered through illness that impacts us in such a powerful way. Principles of empowerment and how one can turn adversity into opportunity will be discussed. This segment should create an environment that is non judgmental and motivating.

Due to confidentiality issues, most of this segment is not shared.

http://cushingshelp.blogspot.com/2012/07/real-talk-psychological-process-of_21.html

• The Rest Of The Trip

Wind-up and heading home

http://cushingshelp.blogspot.com/2012/07/the-rest-of-trip.html

Eventually, all these posts will be edited, cleaned up and typos corrected.;

The Rest Of The Trip

MEETING NOTES : The Rest Of The Trip

Meeting Created: July 22, 2012 12:32 PM

Turns out I didn't sleep at all at night.  For a while, Melissa and were trading comments online.  The restaurants weren't open so I couldn't go out for coffee.  Finally, I just made a pot in the hotel room?

I got dressed and found out that the sweater I'd bought at the mall the night before had short sleeves. Who'd have thought?

When I got to the conference room and lined up 3 coffees since the day before they'd taken the coffee away after the first meeting.  Terry lent me a sweater.

The first lecture was Dr. McCutcheon.  He was Phil's surgeon so he did the presentation of Phil's surprise gift.  See http://www.cushingshelp.blogspot.com/2012/07/phil-and-zebra-undies.html for one of the many pictures.

It took a while for the picture taking to end up so Dr. McCutcheon's lecture on surgery ran over by about 30 minutes and they had to cut him off with lots of slides unshown.

A short break, then Karen's first session.  I couldn't write much about those due to privacy issues but she gave great handouts with resources that I can share with everyone.

Kate, the Corcept nurse, had invited me to lunch but I couldn't find her anywhere so I went with the others to lunch. There was a really nice southwestish buffet.  More pictures.

Karen's second session started. At 2, the people going on the zoo trip had to leave.

We did the spoon theory exercise.  About 3, I had to go take a nap.  I was exhausted.  About 5:30 I went downstairs to see what was going on. Pizza had been ordered but hadn't arrived so we hung around the lobby until it got there.

Finally it got there and we all trooped into Magnolia Ballroom A. We did a lot of table moving so we could all sit together.  Lots of pizza, talking, pictures.

We got a heads up that the wedding across the hall would have fireworks about 9:30 so we planned to become wedding crashes.

I meant to take a video of the Cushings Help 12th Birthday Fireworks but I didn't push the on button so it didn't record.  I did get some stills though.

When we came in, four other Cushies had driven in from Ohio and the Midwest so more talk, more pictures...

I finally had to drag myself away since I was on the first shuttle.

Sunday morning, up early, was the first on the shuttle.  Got to O'Harein plenty of time.  The flights from there and New York were both on time, although the second leg had no TV.  We were reimbursed $15 for that.

We got back to Dulles on schedule. I promptly fell asleep.  DH work me at 9 to have half a sub then off to bed.

Monday, I woke up at 8, all sore and achy, cancelled my piano students for the day and slept off and on until about 5. I thin I'm going back to sleep now, as a matter of fact!

I did want to say that it was so wonderful meeting everyone and seeing long-time friends again.  Cushies are the best!

Naptime!

Real Talk: Psychological Process of Illness, part 2

MEETING NOTES : Karen 2

Meeting Created: July 21, 2012 1:45 PM

Lombard

Real Talk: Psychological Process of Illness
Part II

This Segment will be broken into two sections. Part I will be provide an open opportu-
nity for participants to ask relevant questions around the emotional/mental issues in
living with a chronic illness. Participants will be able to openly talk about depression,
anxiety, trauma, and other processes that occur when living with illness. Part II will
focus on seeing ourselves as survivors of illness and the process of staying empowered
through illness that impacts us in such a powerful way. Principles of empowerment and
how one can turn adversity into opportunity will be discussed. This segment should
create an environment that is non judgmental and motivating. 

PTSD

DSM IV

• Actual death injury to sell or others
• Response, intense fear, helplessness
• Intrusive thoughts
• Nightmares
• Flashbacks
• Psychological distress/response
• Avoid stimuli
• Avoid thoughts, things that remind you
• Detachment
• Unable to emotionally connect
• Can't envision self progression

Living through chronic illness can bring on PTSD

• Fear or recurrence
• Hyper vigilance
• Fear of getting close to others
• Avoidance, put off doctors

vicarious trauma.  Spouses, caregivers

Coping, deal with reality, hope

We're all different.  Balance!

Codependency  don't do more for others than you do for yourself

Counseling is high priority

Dr. Bernie Siegel

Melanie Beatty book Codependent No More

Inner strength 

Affirmations.  I can do it for today

Normal illness, health, then sickness, treatment, back to normal

• Supported by family and friends

Chronically Ill

• Normal health is lost
• Normal not regained
• Feels better, feels worse
• Treatment
• No return to good health
• Caregivers not familiar
• Can't respond
• Resentment toward people who expect too much
• Avoid feeling well because expectation is too high
• People asking "how are you doing?". I'm about the same but thank you for your concern

Magic wand syndrome. Everything will get better. Avoidance.  Disappointment whe things aren't better

Spoon theory

Express gratitude

Eliminate stress

Never give up!

Confidentiality...

Real Talk: Psychological Process of Illness, part 1

MEETING NOTES : Karen 1

Meeting Created: July 21, 2012 11:00 AM

Lombard

Real Talk: Psychological Process of Illness

Part I 

This Segment will be broken into two sections. Part I will be provide an open opportu-
nity for participants to ask relevant questions around the emotional/mental issues in
living with a chronic illness. Participants will be able to openly talk about depression,
anxiety, trauma, and other processes that occur when living with illness. Part II will
focus on seeing ourselves as survivors of illness and the process of staying empowered
through illness that impacts us in such a powerful way. Principles of empowerment and
how one can turn adversity into opportunity will be discussed. This segment should
create an environment that is non judgmental and motivating. 

Confidentiality

• Handouts coming
• Resources
• Interactive exercises

5 stages of loss, Elisabeth Kubler Ross

• Denial and isolation, suppressing real feelings, avoiding people, doctors, people may avoid YOU, act well so others will stay around.  Don't get mail, answer door...
• Anger, Why me?, spread to others, hostile, empathy.  Make patient feel valued  and understood.  Loss of control, feel weak, life is unfair, no one understands, length of time to treatment, unconscious past hurts
• Bargaining.  Reward for good behavior, I might not be sick if... Maybe I deserve to be sick.  Does not work
• Depression.  Great sense of loss. Physical symptoms, finance loss, loss of job, loss of same role in house. Problems increase, depression increase.  Share meaning of life.  Meaning of life
• Acceptance. Not confused with happiness  hope persists.  You need people around you who are hopeful

Trauma and chronic illness

Normal, chronic

APA and chronic illness

Sharing...

Phil and the Zebra Undies

MEETING NOTES : Phil and the Zebra Undies

Meeting Created: July 21, 2012 9:14 AM

Lombard

Magic Conference: Treating Cushing’s Disease with Surgery: Ways of Achieving a Cure

MEETING NOTES : Dr. McCutcheon

Meeting Created: July 21, 2012 9:15 AM

Treating Cushing’s Disease with Surgery: Ways of Achieving a Cure

Dr. McCutcheon will discuss the ways of treating Cushing’s disease from the surgical
perspective, including the different ways of getting to the pituitary, the chances of
success, and the potential complications. In addition, special nuances and pitfalls of
surgery in Cushing’s (as opposed to other types of pituitary tumor) will be addressed. 

First, there was a special presentation to Phil.  (image in next post)

Medical and Surgical

Dr. Cushing

Adrenal-pituitary axes in various conditions leading to CS

No one wants to operate on wrong place

CS is too much cortisol, CD is pituitary

Ectopic

Focus on pituitary

Raise cortisol: depression, anorexia, stress, alcoholism, drugs (BCP)

Signs/Symptoms, usual stuff

Pictures of Cushies

Also:

• Body builder who lost weight
• Thin, vigorous woman with small weight gain (10-15 lbs). Looks fine
• Cyclical or mild symptoms.  Many patients.  Symptoms come and go
• Steroids
• Have to be smarter than disease
• Cushing called it polyglandular syndrome
• Cushing depended on autopsy for diagnosis
• Dogs, horses, cats

Most Cushings is pituitary

Measure cortisol

• Am/pm cortisol.  Better at midnight?
• UFC
• Salivary
• Dex (not sex) suppression.  Low dose confirms CS, high dose addresses etiology of cortisol excess
• CRH stimulation
• Petrosal sinus sampling

Circadian rhythm

ACTH

• Half-life is 17 minutes in plasma
• Must cool specimen, add protease inhibitors
• Adrenal:  ACTH down
• Ectopic:ACTH very high
• Pituitary tumor: ACTH nl or up

ACTH-secreting tumors are usually small but visible on MRI

Less than 10% of tumors are large.

Occult tumor

• BiochemicalnCushing's but tumor doesn't show up
• 10% show no tumor during surgery
• Plan for this!
• Tumors of less than a millimeter can cause CD

When tumor is not shown

• Current MRI allows about 95% of tumors to be detected
• Small dark path may be only clue
• Scan is truly normal, surgery may show tumor, hyperplasia or no abnormality

3T is strongest MRI available to public.  9T is available to research

• No evidence that increasing the strength of MRI increases diagnosis in small pituitary tumors
• 3T won't help if tumor didn't show on 1.5T.  Not worse, either
• Dynamic MRI makes scan more sensitive
• Sella protocol
• For dynamic, get contrast while sliding into machine

Petrosal sinus sampling

• Controversial
• 50-70% correct in predicting tumor side.  Same as flipping a coin
• Midline tumors and crossover venous drainage can occur
• Best for actively producing ACTH
• Time of day matter?  Lab has to get samples fast.  Best done in middle of day for staffing
• CRH is now absent in the US so they have to use DDVAP.  Wait until they make CRH again if possible

Aims in management

• Suppression of hormones
• Reduce tumor mass with correction of visual and neurological deficits
• Preserve pituitary function
• Quality of life

Surgery first line unless too risky, or radiation better option

Different ways to get to tumor

• Transnasal, preferred now
• Endonasal
• Sublabial, wider, better angle, more working room, tooth numbness, better for suprasella
• Trans-ethmoidal, on side of eye, angle to target, not many done
• Trans-palate, very big tumor, not standard
• Craniotomy
• Cut side of nose.  Really large tumors

Turbinates (flexible bones) move out of the way usually

Mesh, fat plug

No way to prevent a new tumor that anyone knows

Dr. Hardy, trained Dr IMMC. First to remove microadenoma in 1964. Before that, only large tumors were removed

30-day (yes, DAY) mortality improving since Cushing's day thanks to improvements on many levels

Problems

• Hole in septum
• Loss of sense of smell
• Carotid artery
• Opening too small
• Hurt optic nerve
• Hurt pituitary

find a surgeon who has done 500, if possible

Post op

Endonasal fewer complaints?  Depends on reporting surgeon

Change

• Endoscopic
• Image-guided
• En bloc removal

Advantages of endoscopy

• Smaller opening
• See around tumor
• Reduce nasal complications 

Disadvantages

• Need equipment
• One hand skill
• Hard to learn
• Blood gets in way
• Lack of 3D

Computer-assisted surgery

Trajectory is very important

image guidance as extra scan, use for wandering carotids

Intraoperative MRI

Cushings surgery problems

• Electrolyte
• Hypertension
• Cardiomyopathy
• Obesity makes hard to position
• IV problems
• Bleed more
• Bleeding
• CSF leak

Failure

• Don't find tumor
• Invasion of other areas

Occult tumor

• Cushings but no tumor on MRI
• Small or hyperplasia.
• He moved on too fast to get all this 

Dual-producing tumor or 2 tumors, producing different hormones

Hyperplasia, less well-defined. Hard to get all edges.  Remove more than you think, removing normal gland or remove less and see how patient does

Today, We're Twelve!

 

Twelve  years ago yesterday  I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself.  We decided that I could.

This website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’ve made  some helpful differences in someone else's life.

Who could have known how this site – now sites – could have grown and grown.

It started as a one-page bit of information about Cushing’s  In people, not dogs, horses, ferrets…

Then, it started growing and growing, taking on a life of its own.  To truly emulate Alice, I added message boards in September.  They were really low-quality, a type put together by an old HTML editor but we had members and actually had discussions.

Not too long after, a real board was opened up and things really started happening.  Then we outgrew that board and ended up in our current home.

The message boards are still very active and we have weekly online text chats, live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Things have changed over the years, though.  The original Cushings-Help site is still updated with new bios, new Helpful Doctor listings, meetings and more but all new articles have moved to a new site - http://www.cushie.info/ – which is much easier to maintain than the older strictly-HTML site.

Also new are a CushieWiki, a site for the Cushing’s Help Organization, several blogs (of which this is one), three Facebook entities (Cushing's Help Cause; Cushing's Help and Support Group; and the Cushings Help Organization, Inc.); a Twitter stream and much more.

New recently:

NEW! Daily News Summary at Cushing's Daily News

NEW! cushie.info is now optimized for viewing on PDAs and mobile phones

NEW!  Medical Centers. These are centers which specialize in Cushing's, pituitary or adrenal patients.  If you, as a patient, have one that you'd like to have added, please send any info you may have to Mary O'Connor (MaryO).  Thank you!

Occasional Newsletters are Back: Members of cushie.info will automatically receive these occasional newsletters. Of course, you may opt-out at any time. Thank you for your interest.  Non-members may subscribe through the Newsletter Subscription module on the left side of this page.

Cushie Toolbar: Be the first to know! The Cushie Toolbar features a Google search box, the 911 Adrenal Crisis! page, the Cushie Reads book recommendations page, Cushie Calendar, all the bios, arranged by diagnosis type or date, add (or update) your bio, our locations around the world, the message boards and chatroom, Helpful Doctors list, add (or update) your Helpful Doctor, support page, scrolling message area for Cushing’s news, Cushing’s blogs, NIH Clinical trials for Cushing’s, pituitary and adrenal, the Cushings Help Organization cause on Facebook, Staticnrg and Cushings on Twitter, new CushieWiki and listen to the Cushing’s podcasts right from this toolbar.

CushieWiki: Please feel free to contribute! The CushieWiki is an ever-changing, ever-growing body of Cushing's knowledge provided by *YOU* and other patients.

Members of the cushie.info site have additional features:

• Your Profile
• Contact Us
• Member List
• How To Add Friends
• Local Liaisons
• Pen Pals
• Add an Article!
• Access the Archives.  News items and abstracts are archived after one month
• Calendar: Add Events
• Calendar: Add a Meeting Venue
• Photos and Images
• Upload Images
• Submit a Link
• Track Health & Fitness Achieve your goals, print charts for your doctors. Add anything else that you would like to track. These are private graphs, available only to you.
• A special menu along the bottom of each page where you can take notes, make changes to your profile, subscribe to RSS feeds and much more.
• Add your Twitter user name and the last 10 "tweets" will show up in your profile for other members to see
• Members can submit links (URLs), send each other PMs, email each other directly, add avatars, add Helpful Doctors and rate current ones or add reviews.  They can also add articles, events and meeting venues. Some articles are available to members only.

We’ve grown out of control from that simple one-page info sheet to way more than I could have ever imagined in that phone conversation with my friend.  I would never have thought that I could do any of this, provide these services and touch the lives of so many others.

I also never thought that I would spend hours a day updating, adding, improving, helping, emailing, phoning, paperwork, writing…

But it’s all worth it if the lives of other Cushies are made better.

-->

Here’s to another 12 years…

The Trip So Far...

MEETING NOTES : The Trip So Far...

Meeting Created: July 20, 2012 11:56 PM

Lombard

Thursday morning I got up about 5 am to head to the airport.  I hadn't slept much the night before because I always get nervous flying.  My first flight was at 9 and left onetime, no problems at all.

I got to Boston for the layover. The first thing I needed to do was get cash for the rest of the trip.  Unfortunately, the ATM didn't play nice and no cash came out.  I called the number on the machine and got the old "push 1 for...". I finally figured out what was the right number and I got a recording telling me to call my bank.

So, I had to make another call.  I am not a phone person at all so this was not a great way to spend my free time.  I finally got through that phone tree and got to a real person.  I told him I had a receipt.  When I actually looked it, I saw that the machine had never intended to give me any money - I had chosen savings instead of checking account. DUH

This time when I tried, I actually got my cash.

The next plane was over an hour late, waiting for a plane to arrive from DC. Huh?  Why did I have to take an earlier flight if there was this later one?

Many babies and toddlers on this flight. The row ahead of me had 2 babies and right across the aisle was a toddler.  So much for a nap.

When we got to Chicago, my bag was the third on the carrousel.  Unheard of.

I called the shuttle company and the person hung up on me.  Called again and the person said I had to wait until 5. I was 3:30.  So I wandered around O'Hare a bit and finally went out.  The shuttle was about 20 minutes late.

Got to the hotel and Terry came over to greet me.  I checked in, took my stuff to my room and back down to the exhibit hall.  I saw Sarah (again) and met several new folks, including 2 Corcept nurses.  Picked up some cool stuff.  

Several of us went to dinner at the hotel then unpacking and bedtime for me.

Friday:

I'm still on eastern time so I woke up earlier than I'd have liked.  I couldn't get back to sleep so I checked email, did some web work.

The first lecture was Dr Frohman. I got a fruit plate and 2 cups of coffee so I wouldn't have to go get more during his talk.  I got to sit next to Denise, who I haven't seen for several years.

Dr. Frohman's and all the lectures are available on http://www.cushingshelp.blogspot.com 

So far, I've been able to get them available within 5 minutes of the end of the lecture-a first for me.

After the break, I found that they'd taken the coffee away.  Aacckk!  Will have to hoard more tomorrow so I don't get a headache.  Karen had a brilliant idea and she ordered a pot from room service, which we split.

Dr. Salvatori was next, then lunch followed by Dr. Salvatori again (see lecture notes!). Then Dr. Heaney and a bit of a break before dinner.  I bought a blue short sleeved golf shirt, the same as Denise.

Back to the room to brush my teeth and off to dinner.  It was nice, conference-y food:  chicken in a sauce, roast potatoes, beans, carrot, asparagus, salad and a rich apple caramel dessert.

After dinner, the obligatory pictures.  

Then off to the mall.  I got a sweater.  It's cold in the meeting room!  

A few of us went in the pool but there were lots of kids.  Maybe tomorrow, when they're at the zoo...

Night!

Magic Conference: Cushing’s Disease, Are We Closer to Medical Therapies?

MEETING NOTES : Dr. Heaney

Meeting Created: July 20, 2012 3:18 PM

Lombard

Cushing’s Disease, Are We Closer to Medical Therapies?

A significant proportion of patients with Cushing's Disease are not cured by primary surgical
treatment, the disease is prone to relapse and significantly damages quality of life. Adjuvant
radiotherapy is an increasingly unattractive option for clinicians who wish to spare their
patients hypopituitarism and other potential complications. Some pharmacological options are
currently available but tend to have dose-limiting side effects. New agents recently approved or
under investigation will be discussed and strategies to select the optimal drug or drug
combination for individual patients reviewed. 

Dr Anthony Heaney

Cushings

• Iatrogenic 1% taking oral steroids
• Creams, inhaled, parental, rectal, articular

Endogenous, 2-3/million a year

• Pituitary-dependent (75%), ACTH secretion

Ectopic ACTH, CRH secretion 

At risk populations for Cushing's?

• Adrenal incedentaloma. 9.2% have Cushing's

Why treat?

• Increased mortality, survival 4.6 years untreated
• Quality of life
• Improve blood pressured and bone density

Clival chordoma?  (look this up later) Clivus bone behind pituitary. http://en.wikipedia.org/wiki/Clivus_(anatomy)

Surgery is first-line therapy

• Experienced surgeon
• 65-90% remission
• Large tumors is less than 65%
• Success rate for repeat surgery is lower
• Reoperation has greater risk for pituitary damage
• Microadenoma 5-10% risk of remission at 5 years
• 30% don't get remission

Radiation

• Control, in 50-60 %
• Relapse possible
• Nelson's
• Can take a long time to control symptoms

Medical therapy

• Ketoconazole: antifungal, lowers testosterone and cortisol.  Several side effects, no impact on pit tumor, adjust dose over time
• Metyrapone: side effects.  Can be used in pregnancy, clinical trials coming soon, no impact on pituitary tumor, dose adjusted over time
• Mitotane
• Pasireotide, control within 1-2 months or not at all, decrease in BP and UFC.  Hyperglycemia.  Some patients discontinued due to that
• Korlym, trying to find correct dose, not an accurate assessment of adrenal insufficiency.  May need sprolactone for hypokalemia?  Blocks all cortisol, need to monitor.  Korlym reps say it's only blocking number 2 receptor.  Could become hyper adrenal/adrenal crisis.  It's a challenge.  Blocks progesterone receptor-termination of pregnancy, pregnancy tests, unopposed estrogen can cause hypertrophy of uterus and unexplained vaginal bleeding
• Combination therapy. Start with pasireotide, then add Cabergoline, then Keto.  Possible AI but can measure cortisol with these drugs
• LCI 699 originally for high BP. Normalized UFC in 11 of 12 Cushies.  US study

Advantages

• No/less surgery
• Gradual reduction of cortisol. Is that better?
• Life-long therapy

Somatostatin action in Cushing's

Normalizing UFC

Orphan disease has major pharmacy attention-we are getting closer?

Magic Conference: Managing Medications and Aftercare of Treatments

MEETING NOTES : Dr. Salvatori, 2

Meeting Created: July 20, 2012 1:33 PM

Lombard

Managing Medications and Aftercare of Treatments

It is crucial to monitor your treatments and aftercare of treatments when living with a pituitary
disorder. Dr. Salvatori will discuss the importance of these issues so you will be aware of how
to manage your pituitary disorder. A simple diagnosis does not mean that medications may be
altered or changed in the future. This segment will assist you with information on how to
manage your future. 

Usually prolactinoma easier to treat

Therapy

• Larger the tumor, less likely surgery will work
• Medications, dopaminergic drugs
• Shrinkage on meds

Bromocriptine, cabergoline.  Cabergoline: take less often, works better, fewer side effects.  Heart valve abnormalities in Parkinson's patients but they take 20-40 times as much, also Pergolide.

Acromegaly...

Cushing's:

Don't switch labs! Stay with the same lab for all testing, if possible

Minnie G., pitituitary apoplexy? Carney Complex?

Hypopituitary

• Take glucocorticoids
• THS is not useful blood test to diagnose
• Testosterone or estrogen
• Growth Hormone

Circadian rhythm

• Cortisol dosage
• Most patients are over treated
• No test tells right dose
• Use the lowest dose that keeps you going
• Always increase for illness
• Always get a flu shot at the beginning of the season

Growth Hormone Deficiency

OTC growth hormone no good

GH deficiency:

• Cholesterol
• Osteoporosis
• Diminished quality of life

Tips:

• No long term studies
• Not for cancer patients
• Maybe need for more cortisol, thyroid hormone
• Serum IGF-1 monitored bi-annually

Secondary hypothyroidism

• Several weeks for improvement
• Twice a year testing
• Do not rely on TSH
• Wide range of normal
• He sees no advantage to "natural" preparations, variable by batch (armour)
• "Wilson syndrome" does not exist
• Because someone wrote a book doesn't make it true...

Diabetes Insipidus (DI)

DDVAP, nasal spray lasts longer

All should have a period during the 24 hours when DDVAP has worn off. 

Brain can only expand 8%

Q&A

Correlation cortisol and blood pressure

ERs not giving steroids even with medic alert bracelet and letters from doctor.

Solu-cortef, troubles getting it in the ER

Take 5-20 mg pills if you can keep it down.

Shouldn't need an emergency kit unless far from hospital

Doctor meeting patient at ER, or calls attending

Rectal version for steroids?

Magic Conference: Testing and Diagnosis Process for Pituitary Disorders

MEETING NOTES : Dr. Salvatori

Meeting Created: July 20, 2012 11:00 AM

Lombard

Testing and Diagnosis Process for Pituitary Disorders 

Pituitary disorders can be difficult to diagnose in many cases. Dr. Salvatori will discuss the

different testing and diagnostic procedures to determine the pituitary disorder. MAGIC
receives many calls asking about diagnostic procedures. This segment will be helpful in under-
standing what procedures are used today to provide the best treatment available. 

Dr. Cushing picture

Dr. S only sees diagnosed patients

Dr C 1932 description from Johns Hopkins, pre-MRI

Causes do CS

• Prescriptions, iatrogenic
• ACTH independent adrenal 20%
• ATCH dependent, 80%, 85%of those Cushings

Signs best to discriminate

• Bruisings
• Facial plethora, redness
• Weakness
• Striae

Symptoms

• Fat pads
• Moon face
• Thin skin
• Acne
• Depression
• Fatigue
• Weight gain
• Menstrual
• Decreased libido
• Irritability

diagnosis

• UFC
• Overnight sex
• Salivary
• Dex-CRF

Why bedtime cortisol?

Diurnal rhythm, changing time zones, what helps you wake up

Is CS ACTH-dependent?

Where is the ACTH coming from?

• Up to 30% not visible on MRI
• Up to 10% of normal people suggest pituitary incidentaloma
• MRI is not good test to diagnose

First do no harm, be sure before surgery

IPSS, not to diagnose Cushings, just to find where ACTH is coming from 

Lose more blood testing for Cushings than during surgery

Prolactinoma vs. pseudo-prolactinoma

• Pregnant
• Psychoactive drugs

Acromegaly: IGF-1 not whole story

Hugo brothers

Hypopituitarism

• Many undiagnosed
• 45/100,000 from Spanish study
• 94/100,000 from Belgian

Secondary, TSH isn't a good test

Testicle size

Adrenal insufficiency

AM cortisol less then 3 ug/dl

Random cortisol above 15 ug/dl rules it out

Tests

• ITT
• ACTH stimulation

Adrenals shrink

Pituitary apoplexy=acute adrenal insufficiency

GH deficiency

IGF-1 not good test

Glucagon used now at Hopkins.  Cutoff is 3

Heavier you are, lower GH on stimulation test

Pan-hypopituitary don't need stimulation testing

Causes of hypopituitary

Traumatic brain injury, mostly young men

Cancer, radiation to brain

Hypopituitary

• Undiagnosed
• Gradual symptoms
• Steroid replacement before thyroid replacement

Q & A

Magic Conference: Understanding your Pituitary Gland in Health and Disease

MEETING NOTES : Dr. Frohman

Meeting Created: July 20, 2012 9:00 AM

Chicago

Understanding your Pituitary Gland in Health and Disease

Dr. Frohman will present an overview of the pituitary gland. He will cover general aspects of
pituitary function and testing and also review the types of pituitary disease that occur,
including pituitary tumors and Sheehan’s Syndrome. Many people ask and wonder if Growth
Hormone Deficiency can be inherited. Dr. Frohman will also briefly address that concern. 

Pituitary

Sheep studies, pulses pulsatile

GH secretion at night, varies with age.  Most in teens then downhill, follows diurnal rhythm

High igf= cancer?

Hypothalamus

Chris

Anterior pituitary

ACTH

Cortisol

Then back to hypothalamus

Inhibin to inhibit ovary and testes

Types of tumors

Alpha subunit no signs or symptoms 

Microadenoma, macroadenoma

Mass effects

Headache, visual disturbance, neurological damage

Impaired pit function...hypopituitarism

Hypersecretion 

Acromegaly

Hands, feet, facial swelling, sleep apnea, snoring, tall, oily skin, increased soft tissue, Goliath, carpal tunnel

TMJ, osteoarthritis

Metabolic changes

Organ enlargement, hypertension

Cushing's

ACTH, cortisol

Acne, hirsuitism, striae, other usual symptoms

Therapy

Surgery

Drugs keto, mifepristone, pasireotide

Radiation stereotactic, gamma knife can cause hypopituitarism

Hypopituitarism

• Primary, Sheehan's syndrome uncommon today
• Genetic

Secondary

• Trauma
• Tumor
• Iatrogenic
• Traumatic brain injury
• Anorexia
• Tumors
• Steroids

Clinical features

• Acute
• Slow

Hypo clinical features

Diagnosis, testing

Q&A