Tuesday, October 30, 2012

Game Time: Anatomy of the pituitary region

If you ask a Cushie, they will tell you that radiologists have an awfully difficult time finding tumors on MRIs of the pituitary. In their defense, these pituitary tumors are very small, often 3-8 millimeters, or a quarter to a half of an inch. These tumors sometimes fall between the 3 mm 'slices' an imaging machine makes, and the patient ends up with images with the 'slices' touching the front and back bumpers of the pituitary tumor but never see the tumor.  Many Cushing's patients have MRIs that radiologists read as clear of tumors. Uneducated primary care doctors and endocrinologists thus rule out Cushing's,  thus extending the time that the patient wanders around undiagnosed, unhelped, and unwell. 

Patients should seek out second opinions from a well-vetted neurosurgeon specializing in pituitary tumors. These doctors understand that tumor detection is more nuanced, and as such, they can usually locate these tumors by examining the structures surrounding the pituitary gland for compression, indentions, or asymmetry. In addition, these doctors are in the unique position to read the MRI before surgery and compare it to what is seen/ found during surgery, thus honing their MRI reading skills.  A radiologist has no such environment to do so. 



Anatomy Quiz

Anatomy of the pituitary region

BMJ 2012; 345 doi: http://dx.doi.org/10.1136/bmj.e6963
(Published 24 October 2012)
  1. Correspondence to: O Shaw at olga.shaw@doctors.org.uk
Identify the structures labelled A-F in this magnetic resonance T1 weighted unenhanced sagittal image of the pituitary region of the brain.

<scroll down for answers>


  • A: Optic chiasm
  • B: Hypothalamus
  • C: Pituitary stalk
  • D: Posterior lobe of pituitary gland
  • E: Anterior lobe of pituitary gland
  • F: Suprasellar cistern


Cite this as: BMJ 2012;345:e6963

Friday, October 19, 2012

Watch PNA's PSA

Thanks to the Pituitary Network Association for launching this public service announcement. It is awesome, eye-catching, and informative. It's clever approach will certainly drive folks to look into the pituitary as the culprit behind their multitude of ailments.

Thursday, October 18, 2012

A Cushie Tale: Chondra

was so happy to read my newsletter from the Pituitary Network Association (www.pituitary.org) yesterday. Chondra's self-diagnosis is quite common among Cushies including myself. May both sides be reminded that patients know their bodies best, and medical professionals should be there to help, not mock. Basic advice, but life-saving. 

Hug a Cushie you know. Their bravery can never be discussed too often, particularly in a world who hardly admits they are sick. -m 

Excerpt from Pituitary Network Association's newsletter:


The online article linked below emphasizes why the PNA and increased media exposure are so important and why pituitary tumors and disorders need more attention than they currently receive. If this woman's doctor had been more knowledgeable, if the symptoms were more readily known she may not have had to diagnose Cushing's herself. The internet has become an invaluable tool in helping pituitary patients worldwide get the diagnosis they so desperately need. However the diagnosis is just the first step. Getting the right treatment by physicians who have pituitary experience is also necessary. The PNA is an essential resource for Pituitary patients to help find the best medical care available to them in their area."

NOTE: photo 3 was not included in this post only because the iPhone limits attachments to five photos.

Saturday, October 6, 2012

Cushies and Growth Hormone Deficiency

For people with Cushing's, the presence of pituitary tumors often leads to growth hormone deficiency. After the tumor is removed, surgical damage from just cutting the pituitary often leads to growth hormone deficiency. For this reason, it is important to understand the signs and symptoms of growth hormone deficiency and the benefits of GH replacement for patients' quality of life.

This article presents an extensive review of the medical literature and concludes that overall, patients benefit from growth hormone replacement, as measured by instruments such as various quality of life questionnaires.

As a Cushie, I had very low IGF-1 levels of 50-90 (normal > 150) since first tested in June 2007. After my pituitary surgery, these levels continued to be low. A doctor administered an insulin tolerance test, a timed test administered to measure the body's levels of growth hormone in reaction to being administered a drug to stimulate GH. Patients with normal growth hormone production see their numbers stim over the 5 mark. I did not stim past 2.55. I was officially declared GH-deficient, and I started growth hormone replacement in August 2010. I have taken injections daily for 26 months. It is imperative to note that while growth hormone replacement has given me back my will to live -- as my friend PB says -- I have had to continually adjust my dose upwards after two pituitary surgeries (0.4 to 1.0) after labs show my IGF-1 levels dropping despite replacement. This can be attributed to the presence of an unseen pituitary tumor on imaging; however, I battle the effects every day. Thus, I face signs and symptoms of growth hormone deficiency each time my dose is too low to keep my IGF-1 levels in range. Growth hormone deficiency is not a disease that ever leaves me, and GH replacement is not a "set it and forget it" solution. Patients are acutely involved, just fighting to have some normal days mixed in with illness.

For help fighting insurance companies to pay for your growth hormone medication, contact the Magic Foundation, leaders in fighting growth hormone-related illnesses in children and adults.

* * * * * * * *

The Open Endocrinology Journal, 2012, 6, (Suppl 1: M12) 91-102 91 Open Access

Quality of Life in §Adult Hypopituitary Patients Treated for Growth Hormone Deficiency

Marianne Klose, Åse Krogh Rasmussen and Ulla Feldt-Rasmussen*
Medical Department of Endocrinology Rigshospitalet, University of Copenhagen, Denmark

Abstract: Growth hormone (GH) affects all organ systems and several studies have also indicated an influence on health related quality of life (QoL). Assessment of QoL is therefore considered as one of several valid indicators of whether or not treatment with GH is beneficial. Two main types of QoL measures are generally used: disease-specific and generic. A combination of the two is generally advocated as they seem to be complementary. Methodologically, questionnaires must be correctly validated in the relevant context of language and a sufficient population based reference group.

In this review, the previously published studies on the effects of GH replacement therapy on QoL in adults will be scrutinized. Although many of the studies on the influence of GH replacement on QoL assessment are either having a too short follow-up period, are uncontrolled, or using supra-physiological GH doses or inappropriate QoL instruments, there is a growing body of evidence for impaired QoL in GH deficient patients with improvement or normalisation after GH replacement.

Keywords: QoL, GH deficiency, pituitary, patient reported outcome, generic, disease specific. 

Thursday, October 4, 2012

Surgical Versus Medical Treatment for Cushing Disease, the New and the Old

I appreciate the input of my doctor, Dr Friedman, on this confusing and ever-changing matter. As a Cushie, we are always trying to determine the best course of treatment. For most of us, survival requires a combination of surgical and medication intervention.

Surgical Versus Medical Treatment for Cushing Disease, the New and the Old

Click here to read Dr Friedman's descriptions of surgical and medical treatment.

Wednesday, October 3, 2012

Cushies Never Return to Normal

Monday, October 1, 2012

Cushies are Diamonds

Cortisol is the stress hormone that Cushies have in abundance, making us the most precious jewels of them all.