Challenging Doctors

By : Jon Danzig

I recently told an email buddy how I closely questioned every doctor about the treatment I would receive for my recently diagnosed acromegaly. This is what she emailed back to me just days before I was due to fly out to Erlangen in Germany for an operation to remove the tumour from my pituitary:

"I hope above all that you can feel completely trusting and relaxed about the medical team who will attend to your operation and your recovery. It is no good if you keep on challenging them. There are times when you have to select the people who you feel are the best professionals and then let them get on with it. Have you ever thought that your apprehension and antagonism may be part of the condition? You will not get yourself any better by 'doing battles' with doctors."

Oh, that got to me! And I felt that I had to reply with some of my own experiences about what has happened with me. Because, on the eve of flying to Germany for my operation, I find myself in disagreement so much of my buddy's advice.

Real Financial Value of a Good Endocrinologist

By Robert Knutzen

It strikes us as absurd that we even feel compelled to write this piece of personal opinion. Sadly, it is even more absurd that the hospital/university/medical center administrators and chiefs of internal medicine across the world has such little understanding of the value of the pituitary endocrinologists on their staffs that they continuously undercut the operating budgets and the staffs of these departments and divisions because they are not "profit-centers".

Allow us please to strongly disagree and share with you the basis for this opinion. Even in major university hospitals (and we know where they are) the pituitary endocrine staffs are kept at a minimum and in some it is only considered part time work to be shared with diabetes care.

Allow us, since we know first hand, to recite but some of the associated disorders and medical needs faced by an average pituitary patient and managed by a GOOD pituitary endocrinologist. (Yes, some of us DO find our way to good endocrine care, no thanks to the Deans of Medical Schools who clearly, in many cases, do a very substandard job of teaching the basics of physiology and endocrinology to their medical students and nurses; we do not know where they teach it well enough to do their students, society and the patients much good).

Androgel 1%, a 400% price increase: How many men are affected by it?

by Charles H. Babb

Perhaps you recollect me. We met over the phone in 1996 or 1997 and shared stories before I became a subscriber. My tumor was 3 ½ cm, acromegaly. After a surgery and 26 subsequent stereotactic radiation treatments, my brain was burned in 14 areas. I am mostly recovered from that now, but lacking medical insurance. Now I must pay cash for annual endocrinological tests, bi-annual MRI's, and my prescriptions.

In September of 2002 in California I learned that Androgel 1%, 5 grams, which I am prescribed for the rest of my life - had been repriced on the retail market with an amazing 400% mark-up, directly as the result of, it seems, a corporate buy-out. According to the stories of two knowledgeable pharmacists: "Early in 2002, Solvay Pharmaceuticals, Inc., having purchased Unimed Pharmaceuticals Inc., then selectively decided to reprice Unimed's product AndroGel 1% metrically. Because each packet or unit dose contains 5 grams, the new price became five times the old price". The price immediately jumped from $38. to $189 per quantity of 30. "AndroGel" is synthetic testosterone and a controlled substance, hence not available through foreign markets, although Canadian suppliers of minimum cosmetic quantities of testosterone may also have repriced.

A Desperate Effort: The Pitfalls and Frustration of a Woman's Quest For Competent Medical Care

By Martha Merino

I am a health professional; an Occupational Therapist. I have worked in the neo-natal intensive care unit of a major hospital and other acute care settings. My experience taught me the fallibility of doctors and the limitations of the health care system. As you will read, the training, knowledge and experience referenced above gave me the ability I would need, and temerity necessary, to doubt what I was told by doctors, listen to my own body; and, in the process, diagnose myself, and save my own life.

On five different occasions I was told by four different doctors that nothing was wrong. It was all in my head and just "STRESS". I felt like telling the doctor okay you are right, it is all in my head, so why don't you take a picture of my head and make sure everything is okay. Believe me, it would have saved me quite a few doctors bills, counseling visits and years of knowing something was not "quite right". It is amazing how easily we take for granted waking up with a healthy body.

During my illness - more for mental health than anything else - I kept a diary of events. It appears below. I hope and pray that others will learn from my experience and avoid the needless suffering endured by myself and countless others.

An Unexpected Twist - By Ana

My story is like any other one of an acromegaly patient, well maybe with a little Latin twist. Very active, physically and intellectually, in the prime of my life, hopes, dreams, places to go, people to meet.

All of a sudden everything starts to become an uphill battle; I go from 20 minutes step-ups to stepping out of bed in 20 minutes, from jogging to juggling to stay awake, from pushups to pulling my pants up, from sweating in the gym to sweating in bed. Probably all too familiar for acromegalics.

My first encounter with the physical change was when after 3 years, I go back to my home town to visit family and friends, and to my surprise, some didn't recognize me due to the "weight gain"(20lbs.). Others mentioned that my features had changed. A Physician friend indicated that the hair growth could be an effect of the hormones in our food, and suggested to eat less chicken. All of these only came to ratify my discomfort not only physical, but emotional; where I looked at myself in the mirror and was seeing a different woman. My professional background made me very aware of the changing proportions, worrying more when accompanying lack of energy and the increasing pain. If this is aging, how can people live to a hundred? I'm only half way there.

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