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. 

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ENDGAMES

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⇓.

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Answers

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

Notes

Cite this as: BMJ 2012;345:e6963

http://www.bmj.com/content/345/bmj.e6963

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.

A Cushie Tale: Chondra

I 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:

"SELF-DIAGNOSIS: CUSHINGS

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."

Read Article

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

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. 

Click here to read full article.

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.

THEODORE C. FRIEDMAN, MD, Ph.D.

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.

Cushies Never Return to Normal

Cushies Never Return to Normal. Patients know this. Sometimes their immediate care takers and family members know this. When will doctors and extended family and friends understand? When will society understand we will never be the same?! When can Cushies shed the burden of guilt over a situation that is beyond our control and certainly not our fault?

In this study, patients with Cushing's Disease were found to have lower quality of life, lower body image perception and higher levels of depression compared to healthy controls, particularly if the disease is persistent despite surgery. [blogger emphasis]

Evaluation of depression, quality of life and body image in patients with Cushing's disease.

Author(s)

Alcalar N, Ozkan S, Kadioglu P, Celik O,Cagatay P, Kucukyuruk B, Gazioglu N 

Institution

Department of Consultation Liaison Psychiatry, Istanbul Medical School, Istanbul University, 34080, Çapa, Istanbul, Turkey, nilalcalar@yahoo.com.

Source

Pituitary 2012 Aug 28.

Abstract

The aim of this study was to evaluate patients with Cushing's disease (CD) who had undergone transsphenoidal surgery in terms of depression, quality of life (QoL), and perception of body image in comparison to healthy controls. Forty patients with CD and 40 healthy controls matched for demographic characteristics were included in the study. The subjects were evaluated with the Beck depression inventory (BDI), the health survey-short form (SF-36) and the multidimensional body-self relations questionnaire (MBSRQ). Subgroups of the patients with CD were formed on the basis of remission status and BDI scores. In this study, QoL in the general health category and body image were lower in the patients with CD than in the healthy subjects. However, no differences in depression scores were found between the two groups. When the CD group was evaluated according to remission rate, the mean BDI score was significantly higher in the CD patients without remission than in both the CD patients with remission and the healthy subjects (p = 0.04). However, the physical functioning, bodily pain and general health scores of the CD patients without remission on the SF-36 questionnaire were lower than in the CD patients in remission and the healthy subjects (p = 0.002, p = 0.04, p = 0.002, respectively). Fitness evaluation, health evaluation and body areas satisfaction scores of the MBSRQ were significantly different in the three groups (p = 0.003, p = 0.009 and p = 0.001, respectively). In this study, patients with CD were found to have lower QoL, lower body image perception and higher levels of depression compared to healthy controls, particularly if the disease is persistent despite surgery.

http://www.springerlink.com/content/m06530qt347vl200/

Cushies are Diamonds

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