Thursday, November 22, 2012

Dogs and Cortisol


Any person researching Cushing's is sure to come encounter as many articles about dogs as humans. Horses and cats get Cushing's as well. Wanna know which doctors seem to be the most compassionate and know the most about Cushing's? Veterinarians.

This morning, as cortisol woke me as it often does at 3:45 am on the dot, I was reading news online on my beloved and ever-present companion, my iPhone.


Fiona Apple cancels tour, citing dying dog: Read her handwritten note | The Music Mix Mobile | EW.com

Fiona explains her dog has Addison's, a disease that plagues the patient with low cortisol (while Cushing's does it with high cortisol). She mentions her dog needing shots to keep her alive. Might this be the same Solu-cortef doses that we Cushing's patients need when we face secondary adrenal insufficiency, even years after pituitary surgery?

I admire Fiona Apple's love, compassion, and courage for her 14-year old "pacifist" rescue dog. While her music has never found its way to my speakers in the past, I will be sure that it soon will.  

Fiona, my thoughts are with you and your lovely canine friend at this time.

Tuesday, November 20, 2012

Sunday, November 18, 2012

Metabolic and cardiovascular outcomes in patients with Cushing’s syndrome of different aetiologies during active disease and 1 year after remission


Metabolic and cardiovascular outcomes in patients with Cushing's syndrome of different aetiologies during active disease and 1 year after remission

  1. Roberta Giordano1
  2. Andreea Picu2
  3. Elisa Marinazzo2
  4. Valentina D'Angelo2
  5. Rita Berardelli2
  6. Ioannis Karamouzis2
  7. Daniela Forno1
  8. Domenico Zinnà2
  9. Mauro Maccario2,
  10. Ezio Ghigo2
  11. Emanuela Arvat2

Article first published online: 5 AUG 2011

DOI: 10.1111/j.1365-2265.2011.04055.x

Clinical Endocrinology

Clinical Endocrinology

Volume 75Issue 3pages 354–360September 2011


Summary

Objective  Cushing's syndrome is associated with several comorbidities responsible for the increased cardiovascular risk, not only during the active phase but also after disease remission.

Design  In 29 patients with Cushing's syndrome (14 Cushing's diseases and 15 adrenal adenomas), waist circumference, fasting and 2-h glucose after oral glucose tolerance test (OGTT), lipid profile and blood pressure were evaluated during the active disease and 1 year after remission and compared with those in 29 sex-, age- and BMI-matched controls.

Results  During the active disease, waist circumference, 2-h glucose after OGTT, total and LDL cholesterol were higher in patients with Cushing's syndrome than in controls (P < 0·001) but similar in Cushing's disease and adrenal adenomas. The prevalence of impaired glucose tolerance (IGT), diabetes mellitus, dyslipidaemia and hypertension was higher (P < 0·001) in patients with Cushing's syndrome (27%, 24%, 59% and 72%) than in controls (10%, 0%, 21% and 10%), with no significant difference between Cushing's disease and adrenal adenomas. One year following hormonal remission, waist circumference persisted higher than in controls (P < 0·05) in both Cushing's disease and adrenal adenomas. Metabolic and cardiovascular abnormalities were still present in both groups, although with a lower prevalence, as well as with a more marked decrease in adrenal adenomas (P < 0·05 vs active disease for IGT, dyslipidaemia and hypertension).

Conclusions  These results show that chronic hypercortisolism, independently of its aetiology, contributes to metabolic impairment and increased cardiovascular risk, while these abnormalities mostly persist in patients with previous Cushing's disease after hormonal remission. Pituitary hormonal deficiencies, hormonal replacement treatments and/or incomplete cure from Cushing's disease may account for these findings.



Sunday, November 11, 2012

Insurance Questions Loom Over Cushing's Patients

Facing brain surgery, a health economist finds the health-care market hard to navigate


A health economist learns the hard way that picking the right insurance plan isn't easy at all.
 Published: NOVEMBER 05, 11:32 AM ET


"Who, when sick and scared, would be equipped to make wrenching decisions that interweave financial, technical, health and emotional threads?"


http://m.washingtonpost.com/national/health-science/facing-brain-surgery-a-health-economist-finds-the-health-care-market-hard-to-navigate/2012/11/05/0a931b5c-fcf1-11e1-b153-218509a954e1_story.html

PS  Thank you Dahlia for writing this article. These insurance decision trees are quite common and plague me and fellow Cushies for months and months as we find the most fitting juxtaposition between out-of-pocket cost and neurosurgeon skill/ chance for a better life and cure. 

Saturday, November 10, 2012

Adrenal Crisis: The Danger That Looms over the Cushie's Head



Well, isn’t this what we patients have been trying to get folks to do for many moons.

The editorial concludes "listening to a well informed patient in adrenal crisis who says that he or she need steroids and taking urgent action will avoid unnecessary deaths from this eminently treatable medical problem."


How to avoid precipitating an acute adrenal crisis
     
Reference: BMJ 2012; 345: e6333
Source: British Medical Journal
Date published: 09/11/2012 16:53

Summary
by: Yuet Wan

An editorial in the BMJ highlights the risks of failing to recognize the need for hydrocortisone in patients at risk of adrenocortical insufficiency (adrenal or addisonian crisis).

The authors note that all too often, healthcare workers do not realize the urgency of treatment for acute adrenal crisis or fail to heed the requests of well informed patients for hydrocortisone. They reiterate that patients with adrenal insufficiency are at risk of developing life threatening adrenal crisis if steroids are reduced or stopped, or if glucocorticoid treatment is not increased during periods of increased stress.

In this article, they describe the situations in which acute adrenal crisis can occur, features of acute adrenal crisis, its treatment, and cite examples where patients with Addison's disease who present unwell to healthcare services have their requests for hydrocortisone administration turned down or delayed. The authors question why there is such mismanagement? They draw attention to guidelines for the perioperative management of such patients on the websites of the Society for Endocrinology (www.endocrinology.org/), the Addison's Disease Self Help Group (www.addisons.org.uk/) and the Pituitary Foundation (www.pituitary.org.uk/). In addition, the Addison's Disease Self Help Group can issue hospital stickers to be put on to drug charts to draw attention to a patient's steroid dependency.

The editorial concludes "listening to a well informed patient in adrenal crisis who says that he or she need steroids and taking urgent action will avoid unnecessary deaths from this eminently treatable medical problem."



2nd Drug Approved to Treat Cushing's

FDA advisory committee approves Signifor to treat Cushing's disease

  • November 7, 2012
"The FDA Endocrinologic and Metabolic Drugs Advisory Committee has voted unanimously to approve pasireotide injection for the treatment of Cushing's disease. This is the second drug labeled specifically to treat hypercortisolemia."

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. 

***************

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.

<scroll down for answers>


















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

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:

"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."


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.

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.

Wednesday, October 3, 2012

Cushies Never Return to Normal