Can We Please Stick to the Subject?

Editorial by Robert Knutzen, MBA, CEO Pituitary Network Association
April, 2006

Sunday, April 23rd, was another one of those days that tries your patience regarding the understanding of hormonal medicine. The CBS newsmagazine 60 Minutes did a controversial piece on growth hormone, calling it an anti-aging medicine. That definition is completely inaccurate – you might as well describe morphine as an alternative to yoga or meditation! CBS made reference to the patients of an anti-aging guru who prescribes growth hormones for people who are vain, which, again, is akin to calling day spa-visiting society mavens "patients" of the feel good/beauty industry. Frankly, a lot of information needs to be filled in between the extreme viewpoints of the CBS team, the Endocrine Society and anti-aging doctors.

Left out of the whole controversy are the real, legitimate, diagnosed, hurting and suffering patients who need growth hormone/and or testosterone, (regardless of their age) to stay functional, be reasonably healthy, and resume their normal place in family and society. For these patients, replacement with growth hormone and testosterone has been validated, scientifically and unequivocally. The real patients know the agony and misery of being hormonally deficient. We belong in this debate - to debunk (and defend ourselves) from the glib statements of a non-expert who audaciously claims that endocrinologists mostly treat thyroid problems and diabetes.

The debate clearly points out the discrepancy between what is said and what is heard. Sadly, as patients we are rarely listened to and debates/discussions/decisions that affect our lives are often controlled by the uninformed and inexperienced, including policy makers. Case in point: A few years ago policy makers within the government declared that my earlier, (usually hormoneproducing) pituitary gland made a "restricted substance" (testosterone), and decided to make it as difficult as possible to obtain hormone replacement. This took place after surgery on my pituitary gland rendered me hypogonadal and thus in need of testosterone replacement. Ironically, I had surgery to remove a growth hormone secreting tumor that was causing a disease called acromegaly. This disease has afflicted many notable persons throughout history, starting with Goliath (Old Testament) Akhenaton (Egyptian Pharaoh), Primo Carnera (Italian boxer), Andre the Giant (wrestler/actor) and many, many more.

The pituitary gland is the center of human sexuality, including libido. As an aside, it is worth mentioning that youth, alone, is an aphrodisiac, which is why so many middle aged and elderly men (and women) seek younger sex partners. But the fact that growth hormone is being abused as a fountain of youth should not take away from its legitimate uses.

Our concern, as patients with real complaints and authentically documented hormonal insufficiency, centers on the controversy. It is understandable and admirable for the medical community to take a stand on curbing the illicit and inappropriate use of hormone treatment. However, this must be done without tarnishing the practice of prescribing necessary hormone treatments such as growth hormone (or testosterone) replacement. It would seem equally reasonable that the medical community should try to redefine the blurred margins between proven medicine and practices driven by greed.

A healthy pituitary gland, coupled with good health habits and lifestyle, rest and exercise, a good outlook, and a willing sex partner (who is open to experimentation) will probably "cure" many, if not all, of your ills from old age. For those of us who are truly hormonally challenged, a true need for hormonal replacement exists in order to make a normal life possible.

I am not certain that CBS, the Endocrine Society or that feel-good guru took the time to explain that somewhere between 20-30 % of the population has or will develop pituitary diseases/tumors, etc. This was first established by Dr. Robert Costello of the Mayo Clinic in 1934. Study after study shows a wide swing in numbers, dependent upon the quality of MRI, autopsy, etc., but the prevalence is huge and indisputable! We will concede that no one knows how many of these tumors are clinically significant, because no one has bothered to learn it, yet!

We do know, however, that mental, emotional, and sexual dysfunction usually show up first in the patient's galaxy of symptoms, but most physicians (endocrinologists included) hate to intrude and ask such personal questions of patients. So patients go un- or under-diagnosed, and continue to suffer in silence.

The entire issue is one of listening to each other. As a doctor, did you listen in medical school? Do you listen, really listen, and analyze the problems your patients describe? As patients, do you listen to your doctor, and make sure he or she listens to you? Are you seeking help from experts who specialize in treating with your particular symptoms and problems? Or, are you too preoccupied with feeling good to analyze what the real problem might be? If you are looking for love (read treatment) in all the wrong places, it may be unnecessary, very costly, and damaging to your long-term health.