Saturday, July 21, 2012

Real Talk: Psychological Process of Illness, part 2


Meeting Created: July 21, 2012 1:45 PM


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. 



  • 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!

Saturday, July 21, 2012

Real Talk: Psychological Process of Illness, part 1


Meeting Created: July 21, 2012 11:00 AM


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. 


  • 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


Saturday, July 21, 2012

Phil and the Zebra Undies

MEETING NOTES : Phil and the Zebra Undies

Meeting Created: July 21, 2012 9:14 AM



Saturday, July 21, 2012

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


Focus on pituitary

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

Signs/Symptoms, usual stuff

Pictures of Cushies


  • 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

  • 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

  • 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


  • Endoscopic
  • Image-guided
  • En bloc removal
Advantages of endoscopy
  • Smaller opening
  • See around tumor
  • Reduce nasal complications 
  • 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
  • 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


Saturday, July 21, 2012

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 ( 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 - – 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! 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 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 site have additional features:

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…

Saturday, July 21, 2012

The Trip So Far...

MEETING NOTES : The Trip So Far...

Meeting Created: July 20, 2012 11:56 PM


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.


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 

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...



Friday, July 20, 2012

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


Meeting Created: July 20, 2012 3:18 PM


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


  • 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.

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
  • 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
  • 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?

Friday, July 20, 2012

Magic Conference: Managing Medications and Aftercare of Treatments

MEETING NOTES : Dr. Salvatori, 2

Meeting Created: July 20, 2012 1:33 PM


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


  • 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.


Don't switch labs! Stay with the same lab for all testing, if possible
Minnie G., pitituitary apoplexy? Carney Complex?

  • 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
  • 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%


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?

Friday, July 20, 2012

Magic Conference: Testing and Diagnosis Process for Pituitary Disorders

MEETING NOTES : Dr. Salvatori

Meeting Created: July 20, 2012 11:00 AM


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

  • 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

  • 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

  • Undiagnosed
  • Gradual symptoms
  • Steroid replacement before thyroid replacement
Q & A

Friday, July 20, 2012

Magic Conference: Understanding your Pituitary Gland in Health and Disease


Meeting Created: July 20, 2012 9:00 AM


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. 


Sheep studies, pulses pulsatile

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

High igf= cancer?

Anterior pituitary
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


Hands, feet, facial swelling, sleep apnea, snoring, tall, oily skin, increased soft tissue, Goliath, carpal tunnel
TMJ, osteoarthritis
Metabolic changes
Organ enlargement, hypertension

ACTH, cortisol
Acne, hirsuitism, striae, other usual symptoms

Drugs keto, mifepristone, pasireotide
Radiation stereotactic, gamma knife can cause hypopituitarism

  • Primary, Sheehan's syndrome uncommon today
  • Genetic
  • Trauma
  • Tumor
  • Iatrogenic
  • Traumatic brain injury
  • Anorexia
  • Tumors
  • Steroids
Clinical features
  • Acute
  • Slow
Hypo clinical features

Diagnosis, testing