Cushings-Syndrome Books

This is the only source for complete information on pituitary disease and all the problems it causes people! Buying this book could completely turn around -- or even save your life.

This is the only source for complete information on pituitary disease and all the problems it causes people! Buying this book could completely turn around -- or even save your life.

This book is what helped me to find useful information on what was an illness that wrecked havoc with my life. I appreciated the fact that so much of the content was written as true medical data. Although that is a little more complex to read it also validated the accuracy of the information to my doctors as I tried to use this to further educate them on pituatary conditions.
As a side note, the Pituatary Network Association is constantly striving to improve their contributions to this cause and they released a fourth edition of this book on their website during 2006. Any edition will be useful but getting the 4th edition will provide the most current knowledge base. Their website is extremely valuable but also having a reference book was a must for me.

This book was really helpful in understanding the many aspects of pituitary tumors and disorders. There is something for everyone and the articles are outstanding. Highly recommended.

I highly recommend this book to anyone who has been diagnosed with a pituitary tumor. There is SO much excellent and easy to understand information in this book. I've never found another resource that covered so many aspects of being a pituitary patient like me. Great articles, and listings of other resources like doctors that actually KNOW what they are doing. I'm so glad I found this book.

I've had a hard time finding information about my tumor on the internet and in book stores. This book answered many of my questions and helped me realize I need to see a more informed doctor!

Cushing's Syndrome is a welcome addition to the literature on a subject that remains among the most difficult and challenging in endocrinology. It is because of these challenges that almost every year the Endocrine Society's annual meeting includes one or two sessions dedicated to Cushing's syndrome, adrenal tumors, or corticotropin-producing pituitary adenomas (Cushing's disease). A comprehensive as well as critical review of what is new in the field is therefore quite timely.

This book is a reasonably up-to-date and well presented review of the clinical presentation, diagnosis, and treatment of Cushing's syndrome and was written by some of the leading experts in the field. It comes from Vanderbilt University Medical Center, which for years was the only academic center on this side of the Atlantic where endocrine research dedicated also exclusively to the study of the hypothalamic-pituitary-adrenal axis was undertaken. Virtually everything we know today about the diagnostic investigation and treatment of Cusing's syndrome is based directly on or is derived from knowledge that was generated in Nashville "by one of two giants in the field, either Dr. Grant Liddle or Dr. David Orth." In addition, some of today's leaders in basic and clinical research on Cushing's syndrome were trained at Vanderbilt and are contributors to this book.

The book starts with a review of the physiology of the hypothalamic-pituitary-adrenal axis. Such a review is a necessary component of any book that covers diagnostic tests for Cushing's syndrome. However, this chapter fails to present a complete story; furthermore, it overlaps considerably with a chapter on corticotropin-producing adenomas. More comprehensive coverage of the actions of glucocorticoids would have been welcome. The chapter on clinical manifestations would have benefited from the inclusion of more pictures and references to more recent literature on vascular and orthopedic manifestations and atypical Cushing's syndrome. There is an excellent review of the psychiatric manifestations of Cushing's syndrome, which are an often overlooked compenent of this disorder.

The chapters on diagnostic evaluation and on asay methods, by Newell-Price and Besser and by Nicholson and Workman, respectively - leaders in the field - are outstanding. Since the mid-1980s, there has not been a comprehensive evaluation of the use of steroid hormone essays in the diagnosis of Cushing's syndrome. I know I will frequently refer to these chapters from now on. The chapters that follow this one, on ectopic and adrenocortical Cushing's syndrome and on surgical and other treatments, are comprehensive reviews of their subjects, although admittedly some experts in the field would not agree with everything that is said in them.

As in any multiauthored book, there are variations in style as well as in opinion (e.g., with regard to the proper cortisol level at midnight). But the book also represents the first major attempt since the early 1980s to gather under one cover the various aspects of this fascinating disorder. The ultimate judge of any book is its audience; the audience for this book is not experts in the field but rather fellows-in-training, general practioners, and endocrinologists in practice. I recommend it to them wholeheartedly. I also would suggest this book to patients with Cushing's syndrome as well as to academic physicians who are interested in the clinical and molecular investigation of this disorder, both as a first step and as a guide to the intricacies and controversies surrounding the diagnosis and treatment of endogenous hypercortisolemia in humans.

Constantine A. Stratakis, M.D., Ph.D., National Institute of Child Health and Human Development, Bethesda, MD 20892-1862,
N ENGL J MED 349:8 August 21, 2003

I personally find the article to be excellent. I greatly appreciated the author's interest to write on a topic so poorly publicized. Recent studies show as high as one in five adults may have a pituitary brain tumor but yet, they are truly one of the best kept secrets in medicine today.

As you can see by the article I suffered for seven years with Cushing's disease caused by a pituitary tumor and over and over I was told by highly educated medical professionals, there was nothing medically wrong with me. By the grace of God, on April 14th, 2000 Dr. Daniel Kelly of the UCLA division of neurosurgery, removed the tiny but deadly tumor and literally gave me my life back.

For the past six years, I have dedicated my life to helping others with pituitary brain tumors. A small group of us started the UCLA Pituitary Patient Support Group April 2001 and it is still the only one in CA, in fact the only other pituitary patient support group even remotely similar in the entire United States is the one at Rush Medical Center in Chicago. I work full time as an outside sales person, driving over 2500 miles a month (in Los Angeles Traffic). I choose to stay in outside sales so that I can continue to have the extra time in my car during the day to make phone calls to people that have asked for help trying to find doctors in their local area that will know how to diagnose them properly. I also stay in outside sales because I am often asked to give talks at a neuroendocrine conference or patient symposium. Most of the time I have to use one of my personal vacation days to get the time off, without any kind of financial compensation. But I don't mind because I truly care about people suffering because I am truly one of the lucky ones and I got my life back and I need to help make a difference others.

I write this review only because of the previous reviewer "Annie". Her slanderous remarks are very upsetting because so many people need help and there are just a handful of us out there working our tails off to help raise awareness and to help educate about this insidious illness that so many people are effected by but yet so few are familiar with. It's a shame someone like Annie goes through life missing the big picture.

Well many blessings and great health,

Sharmyn
pituitarybuddy@hotmail.com

to the Cushing's community. Not only is Ms. McGraw admittedly uncured, but she is only out to hype herself, not do service to anyone but herself.

Having been just diagnosed with Cushings Syndrom last year- I found this book not only informative but it also gave me hope and direction as to what mode of treament- ie-alternative vs- 100% medical-was best for me- thank you

Frankly, I expected a higher calibre of book. It looks like Mom & Pop published it. It is rife with spelling and punctuation errors. Pituitary is spelled...pituatary. Give me a break. What kind of credibility does this woman deserve if the she can't even master the mechanics of spelling and punctuation. So she spent one whole day at Cornell Medical library doing research (5 hours, 2 of which she admittedly slept). Her three hours of research at Cornell are about what the book is worth. It has pedestrian information about Cushing's syndrome. A trip to the internet is worth five of her books.

As a patient with Cushing's, I was very excited to see a book about Cushing's in print. Especially from a patient's perspective. However, this is not a typical patient. I'm quite positive this story could've been told without reference to the in-home nurse, the maid, shopping for a house in London. I would venture to say that the majority of people with Cushing's are much more concerned with problems like going back to work, raising their children, etc. A major concern in my recovery was not wondering when I could return to the summer home (as was in her list of suggested questions for the patient to ask her doctor).

The author also heavily puts down the experiences of other Cushing's patients. She has sadly missed out on a lot of valuable information. She complains that nobody warned her of the potential steroid withdrawals she would be going through. Perhaps if she had no been so quick to dismiss the other patients she spoke with, then she would've been better prepared for what was to happen. I belong to an online support group for Cushing's patients, and I know what I'm facing. Yes, many Cushing's patients do recount the horror stories of how long it took them to be diagnosed. Not all of us are fortunate enough to have doctors who return our calls or quickly schedule life-saving tests. There is a lot of pain in this disease - part of working through the pain is to talk about it.

I do believe this story would be helpful for family members to read. It details the depression very well. However, the author does not detail much about the other symptoms. Many others with Cushing's have problems with things like bone loss, weight gain (she gained 25 lbs - I believe the average is around 80), missed menstrual cycles and a host of other problems.

Her "Technical" section is sorely misinformed. She states that the ectopic form of Cushing's is from extra-adrenal tissue. That is not true. She believes that she has found little known medical studies. Anyone with an internet connection has access to these articles, and most Cushing's patients have looked at these studies, in depth. She also doesn't review the testing very well. She highly advocates some forms of testing (specifically, the dexamethasone test) that has the highest false-negative rates in Cushing's testing. As any Cushing's patient will tell you, testing is the most important part of gaining a diagnosis and getting well.

I would like to offer the author kudos for publishing this book (I'm fairly certain this is self-published). There is precious little written about Cushing's, and any time we can get the word out a giant step is taken towards public recognition. However, she seems to believe she is a spokesperson for Cushing's; as a patient and fellow sufferer, I can say that I don't believe she speaks for me.

Overall, I liked the book. I was very happy to finally see something in print that gave creedance and validation to the nightmare of steroid withdrawl and the multiple challenges of recovery. The author correctly points out that there is virtually nothing published or studied about this in the United States. As we all know, after surgery we are basically left to our own devises.

I related to many of the author's experiences with regard to the illness and recovery. I felt that she very accurately described how it is to only have limited reserves of physical, emotional and intellectual energy, at the start of each day. When they are used up they are gone and that is that. This is my life, as well, and I am glad to have the words to relate it too. Before reading the book, it was basically just a feeling of frustration that I had that I had not yet been able to describe.

The author was fortunate on many counts, as she admits herself. She is very financially secure and does not have to contribute to the income of their home, even though she is a lawyer herself. Because of her financial security, she has been afforded the kind of help and support that many of us will never know. She has a housekeeper that is also available to take on responisbilities with her 2 children. When she speaks of the events of her day, she never speaks of cleaning a toilet or doing multiple loads of laundry. Her main responsibilities, as she stated, were taking her children to school, exercising, doing medical research, volunteering occasionally at the children's school, picking them up from school, helping with homework, getting dinner, and putting them to bed. Now, I absolutely understand that to a Cushing's patient in recovery, that is alot. I got winded just typing it all. However, many of us have those responsibilities, as well as maintaining the home with little to no help, and holding down jobs outside of the home. The author was also able to afford a private nurse to take care of her for the first 2 weeks after surgery. I absolutely do not begrudge the author these luxuries. Hey, I wished that I had them myself. But, I do think it is important to note that this could alter ones perspective a bit.

Reason unknown, but it appeared that the author had excellent access to healthcare, beyond what is typical of the experience of your average American. It seemed that each time she needed an appointment, she got one immediately. She frequently had doctors returning her phone calls promptly. There were not stories of endless voicemails left to doctor's assistants that were never returned. She did however, make one reference to it being difficult to contact her psychiatrist at times and having to go through the answering service. There were no accounts of having to haggle with insurance companies or having to wait for authorization of medical services. All things that the majority of Cushing's patients face, that sometimes cause as much distress as the disease itself.

The author had the means to not only see a psychiatrist weekly, but also see a psychologist on a regular basis to assist her with the emotional turmoil of Cushing's. She also had access to consultation from a specialist that specialized purely in obtaining correct combinations of psychiatric medication for complicated cases.

Again, I point these things out, not as a criticism, but because they are unique to her situation, I believe, and do not represent the journey of most cushing's patients with regard to the areas noted. I do understand that she has titled her book "One Woman's Journey". However, she does make many assertions in the book that imply that if others would only follow her lead, they would be better off in their recovery. She does not back this up with science, (because there is none) but with personal anectodal experience.

The only real problem I had with the book was the fact that I felt the author's view to be from an extemely narrow perch. She stated that she spoke to a "handful of cushing's patients, but never connected with one who had a positive attitude. It began to annoy me", she said. She then went on to say that she found "many Cushing's patients quick to recite their history of misdiagnosis and the horrors of their illness." My response to that is "Well excuuuuuuse them!"

The author had a very easy diagnosis. She did not experience the frustration, humiliation and dispair of going to multitudes of doctors and being told you are simply fat and depressed. She did not experience the needless loss of years that that struggle brings. I gratefully did not have to experience that either. However, I would never be so brazen as to judge someone else with experiences that I will never understand. And ironically, she did not want to be judged either, and many times made reference to the fact that only another cushing's patient could understand, because they had been through it themselves.

Things appear different when one is in a silo. I don't believe that you can make accurate and broad assessments about a disease, if you have only your own experiences to draw from. I know for myself, I really had no meaningful understanding of this disease in its entirety until I met many other cushing's patients, from all over the world, from many different socioeconomic backgrouds, with different access to healthcare, etc. I believe the author has cheated herself and her readers by not reaching out beyond a "handful of cushing's patients" to share with and gain knowledge beyond her own world.

Cushing's is a rare disease but perhaps it is only rarely diagnosed. Getting the word out is very important to public understanding and this book can claim a small part in that. It was good to see one patient's perspective on Cushing's, but I would have preferred a more typical experience than this one, or those of several patients.

Perhaps this book is best read by someone who doesn't have access to a computer, who can't find a support group. It would be better than nothing, easier to read than the medical textbooks I had to wade through during my diagnosis. I, too, had Cushing's, although I had the pituitary version, known as Cushing's Disease.

My personal journey was a world apart from the author's.

Perhaps Ms. "Walsh" thought she was doing other patients a favor by glossing over her symptoms. If her book listed all her true symptoms, she had a very mild, easily diagnosed case. Most patients have to go through years of frustration trying to get a diagnosis, being humiliated by doctors telling them they're only "fat" or "depressed" without looking for the true cause of their problems. I personally went to seven different doctors before getting a hint of a diagnosis - and that was after suggesting to doctors that I had Cushing's. I was brushed off by every one of those seven doctors.

Nowadays, I run an online support group for Cushing's patients and communicate with hundreds of Cushing's patients. Virtually none has had a diagnosis or recovery as easy as the author's was. In saying that there are "no developed support groups because there are not many of us," she lets us know that she didn't look very far. We have a national organization and local meetings on a regular basis.

A helpful appendix to this book would have included names, phone numbers and/or email addresses of people involved in these support groups, as well as websites and national organizations for Cushing's. Cushing's is a very lonely disease. We need to be able to talk to others who truly understand what we're going through.

It's a shame that the author of this book did not feel that way.

By her own admission, Ms. "Walsh" has effectively insulted all of us as a group by saying that she spoke to a "handful of Cushing's patients, but never connected with one who had a positive attitude. It began to annoy me," she said. She then went on to say that she found "many Cushing's patients quick to recite their history of misdiagnosis and the horrors of their illness." This is the average Cushing's patient's experience, whether it annoys the author or not.

Most of us do not have the benefit of a private nurse post-op, or any of the other helpers that the author Mary "Walsh" had. Most patients have to deal with insurance issues, doctors who won't return phone calls or run tests, steroid withdrawal, major depression, surgeries that aren't effective, recurrences - all on their own, without a bevy of personal assistants. The author's friends and family rallied around to help. Most Cushing's patients find that their friends and family don't understand at all.

This book reads more like an unedited diary than a work for publication. I find it appalling that this book was edited by someone with a Masters Degree in Education. Spelling, punctuation and grammatical errors can be found on nearly every page.

This is more of a personal account than a Patient Guide. It's a story with a nice ending.

The book provided me, a family member of someone with Cushings, with more insight into Cushings, which gave the syndrome/disease, more credibility in my eyes. I gained a better understanding of my family member and am definitely more sensitive to the issues. Prior to reading it, I had no concept of the extent of the symptoms of this disease. The author has the unique and fortunate situation of obviously being financially secure -- always helpful when dealing with a long-term, medical situation.

The book would have more value and a wider audience (perhaps professionals in the field of Case Management and Psychology)if it included some outcome or general prognosis information on a variety of cases with information on socio-economic factors.

If you are even slightly internet savvy, then you're already aware of the information in this book. It mostly gives a high level overview of Cushing's, with no more useful information than you'd find in your own internet searches.

Anyone with half a brain knows to check the accredited medical sites that appear in your search results. This book is nothing but a glorified dump from someone else's internet search.

I am so sorry that I wasted my time and money on this. I got absolutely zero help from this book.