September 2011

Navigating Invisible Illness in the Age of Modern Medicine

Published on September 26, 2011

4.4K views

Much has been about said about empowering and educating patients to be partners in the healthcare dance. From the e-patient and e-health revolutions through the piles of research showing more engaged patients have better outcomes, all seem to point a more active role and increased responsibility for the patient in his or her own care. But how does that work when the illness is not clearly defined, is not easily diagnosed or for which effective treatments are limited? What does it mean to be an empowered patient with an invisible illness?

This is the question that many women face on a regular basis. Indeed, for a number of predominantly female disorders, whether hormonally modulated or not, there are often many years before the symptoms are addressed as real and not figments of the female imagination. Chronic fatigue and fibromyalgia are two such examples, but so are endometriosis and an array of other perhaps more subtle hormone conditions.

During those years before modern medicine and the research community recognize the reality that define a particular disease process; during the years when women are prescribed psychiatric meds for non psychiatric conditions; during the years when pain medications with diverse side-effect profiles blur the line between the original disease and the one that is induced pharmacologically; during those years, how does one become the e-patient, the e-woman, without becoming a physician herself?

Really, we want to know.
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Women’s Hormones: An Intellectual and Ethical Cul de Sac

by Chandler Marrs, PhD

Published on September 21, 2011

10.6K views

Menopause is barreling down with a ferocity that is difficult to ignore. Like many women my age, I’ve had my share of health challenges and, until recently, blindly trusted the pharmaceutical industry to fix all that ailed me. Health by chemistry was a great thing; oral contraceptives, a fabulous invention, allergy meds – ditto, pain killers – wonderful, and on, and on. Take a pill and feel better, isn’t that what we all want? But I, like so many women, have lost faith in pharmaceuticals. It’s not because the science isn’t cool, it is, in every area of pharmacology, except women’s hormone therapies. Here, intellectual curiosity and innovation have been replaced by status quo. Little has changed in this area of hormones and health in 60 years.

Hormones, Hormones, Everywhere and No Innovation in Sight

Since their inception, hormone replacement therapies (HRT) and oral contraceptives have dominated women’s health, immediately moving from seemingly narrow applications when first introduced to the almost mythical status as cure-alls for any female and many general health ailments. The history of both these pills is strikingly inglorious and utterly dumbfounding. Just on general principle, why would anyone believe any medication could be so widely beneficial for so many apparently disparate conditions? It is physiologically impossible.

For HRT especially, if one believes the marketing, the pills provide a veritable fountain of youth. Where is the science? But believe we did, and generations of women may now be paying the consequences.

From the very first estrogens synthesized and marketed to women everywhere (diethylstilbestrol- DES), through today’s HRTs and OCs, profit appears to override health concerns. Even in the 1930’s and 1940s before these drugs came to market, the carcinogenic risks were well known, and yet, they garnered FDA approval and were sold to millions, upon millions of women.

Synthetic Hormones

I have personal experience only with the often ignored side effects of oral contraceptives, as I have yet to reach the age of menopause. In my 20s, while on the presumable high estrogen dose of oral contraceptives that were common then, I had intense bouts of vertigo that would develop even when lying down and ever increasing blood pressure. After years of expensive testing could find no neurological cause for the vertigo and after repeated prescriptions to lower my blood pressure, I stopped taking the pill. I had enough. The vertigo stopped fairly soon thereafter and the blood pressure returned to normal. Over those several years, there was not a single physician that suggested I stop taking the pill, indeed I was prescribed more and more meds to counter the apparently unknown side effects of oral contraceptives and it was recommended I see a shrink because the vertigo had to be psychosomatic.

I look back at that time and I wonder how many other women suffered similar circumstances. What is this propensity to prescribe and continue prescribing medications in the face of apparent ill effects? Why are we ignoring, even at the patient level, the possibility that some meds may not work for some women (or men). The statistics bear this out, but there seems to be a natural inclination to minimize these risks. This is compounded of course, by intense marketing.

As I approach this menopausal stage, I again will be faced with yet another hormone-issue for which the choices are bad and worse. We know from the Women’s Health Initiative (WHI) in 2002, that HRT is not the panacea it was marketed to be and the risks associated with this medication are not benign.

Over a one year period, for every 10,000 women taking and estrogen plus progestin, the risk of developing these conditions increases by:

• Heart disease: 7 additional cases
• Breast cancer: 8 additional cases
• Stroke: 8 additional cases
• Blood clots: 18 additional cases

For estrogen only:

• Stroke: 12 additional cases
• Blood Clots: 6 additional cases

Consider however, the millions of women who will take or have taken HRT for years. As of 2010, over eight million women in the US alone take HRT, and will likely do so for at least a couple years. In this light, the increased risk of disease looks a lot scarier.

• Heart disease: 5600 new cases per year; 28,000 in five years
• Breast cancer: 6,400 new cases per year; 32,000 in five years
• Stroke: 6,400 new cases per year; 32,000 in five years
• Blood clots: 14,400 new cases per year; 72,000 in five years

When the WHI was published, some 17 million women in the US had been taking HRT for many, many years, even decades. That’s 13,600 new cases of breast cancer per year, 68,000 in five years! Despite these data, and the thousands of lawsuits that followed, HRT is still one of the most frequently prescribed medications worldwide. I think we can do better.

Statistics from the Mayo Clinic

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What do male rodents and human females have in common?

by Chandler Marrs, PhD

Published on September 14, 2011

6.1K views

Drug Development Conducted mostly in Male Rodents

According to most researchers, male rodents share enough in common with human females to extrapolate findings about the mechanisms and treatment of pain. A review of research in the journal Pain (2007) found that over a ten year period, fully 79% of all animal studies published, performed drug testing on male animals only. Only 8% of the published research included female animals and a mere 4% investigated the possible differences between males and females.

The preponderance of male rodents in animal research is in stark contrast to the higher prevalence of women suffering from pain related disorders. I find it difficult to justify using male rodents for drug research that will be translated to the female population, especially when the estrus and menstrual cycles influence so many pharmacokinetic variables.

What do you think? How do the numbers stack up in other areas of research?

Greenspan et al. Pain. 2007 Nov;132 Suppl 1:S26-45. Epub 2007 Oct 25.
To read the full article click here.

Every Man Knows a Woman with Hormones

by Chandler Marrs, PhD

Published on September 14, 2011

4.7K views

And we all have hormones. Those wonderfully mysterious chemicals circulating and cycling with the regularity and rapidity that makes one’s head spin, female hormones are at once the bane and the joy of man’s existence. Our hormones are what make us find you attractive, laugh at your jokes, date you, sleep with you and bear your children. Our hormones can also turn us into stark, raving lunatics at seemingly benign comments. Most men know and understand this, at least intuitively. You are prepared for the ‘wrath of raging hormones’ if not from direct experience with your mothers, sisters or girlfriends, then from the many locker room and sitcom epithets ever present in modern culture.

What most men (and many women) are not prepared for, and I’d venture don’t understand, is the very real chemistry changes behind the wrath. Much of this goes far beyond just mood changes, often eliciting a bevy of symptoms and disease processes that we’re only now beginning to understand.

In many ways, hormones are just like every other chemical circulating in our bodies, regulating this system or that, entirely responsible for certain functions, secondary and tertiary players in others. Men have the same hormones as women, just in different concentrations. And hormones cycle in men, but not so radically and regularly. What is different between ‘men’s hormones’ and ‘women’s hormones’ is not the hormones themselves, but the systems and structures on which they operate and the reproductive functions that ensue.

To state the obvious, women have ovaries and a uterus. Those structures, along with the brain form the foundation of a beautifully orchestrated and incredibly complex chemical feedback system that not only controls reproduction, but influences just about every aspect of our lives. Estradiol and progesterone concentrations increase several fold across an average cycle, preparing the uterus for a possible pregnancy. In the absence of pregnancy, hormone levels plummet and the lining of uterus, the endometrium sheds. The all-too-familiar mood changes and pain commence.

As a man viewing this process from the outside, it is difficult to appreciate the magnitude of hormone changes affecting the women in your life. When hormones act on the brain or in the body, they do so in much the same manner as many common drugs. In terms of chemistry, menstrual cycle hormone changes are very similar to a drug addiction/withdrawal pattern with increasing dosages of stimulants (like amphetamines) during the first two weeks, a combo pack of sedatives (like Valium or alcohol) plus a few stimulants during the second two weeks, followed by cold turkey withdrawal. Rinse and repeat, over and over again, approximately 450 times during the course of her lifetime. Pregnancy and postpartum follow the same pattern only the dosage of hormones, the duration of exposure and the magnitude of the withdrawal are increased exponentially. The veritable cocktail of hormones that make these functions possible is breathtaking.

What happens when one or more of these chemical messengers gets a little out of sync and the system become dysregulated, as is inevitable in any system that cycles so frequently? Or what happens when an illness or disease, maybe not caused by hormones, develops in the context of this ever fluctuating female chemistry? You get a bit of chaos (think butterflies, not randomness).

As a man, who has women in his life, you have two choices, ignore and avoid the chaos and hope there are no storms on the horizon, or embrace the chaos and find ways to anticipate and alleviate the pain. Many choose the former, including much of medical science. This is the avoidable ignorance, I wrote about last week. I’d like to think the men who love us, choose the latter. Certainly, the men who shared their wives’ and daughters’ stories recognize the need to investigate and develop better treatments for women. They may not understand fully the complexity of women’s hormones, but they understand the suffering, sense that symptoms are being ignored and want nothing more than to make it all better.

Avoidable Ignorance: Implications for Women’s Health

by Chandler Marrs, PhD

Published on September 7, 2011

7.2K views

It is difficult to read the stories of suffering expressed by the women featured in our blog and not become incensed. We can joke about women’s hormone health and deride the science to fringe status, but our failure to recognize, investigate and create options for women has serious consequences. In my mind, this is an avoidable ignorance.

I borrowed that phrase from a quote by Dr. Albert G. Mulley, the new Director of the Dartmouth Center for Health Care Delivery Science. The full quote “no decision should be made in the face of avoidable ignorance” speaks volumes about the state of women’s health care.

How many women have sought treatment for a dysregulated menstrual cycle, menstrual cycle related pain, or other presumably hormonally modulated events only to be sent home without so much as a lab test but with oral contraceptives? Worse yet, how many women have had an endless array of invasive procedures only to receive an uncertain diagnosis and oral contraceptives. This is avoidable ignorance.

Why don’t women get routine hormone testing for what are presumably hormone related conditions? We wouldn’t treat high blood pressure without first measuring blood pressure or diabetes without first measuring glucose. Why then would we treat presumably hormonal conditions, with hormone modifying drugs, without ever measuring hormones before or during treatment? Is the pill so successful at treating all female symptoms that no testing is ever needed? Or is there some avoidable ignorance at play? Judge for yourself.

The most common arguments against hormone testing include:

1. The clinical reference ranges for hormones are too broad to be useful
2. The test results will not modify clinical decision making, so why test
3. Hormones are too complicated and variable
4. A good clinical interview suffices

It’s not that we cannot develop more robust hormone reference ranges, more sensitive hormone testing methods, perhaps link a woman’s unique biochemistry to her clinical symptoms, we just have not. The often repeated excuse that ‘hormones are complicated, variable and too difficult to analyze’ just doesn’t hold true given the state of science and technology today, neither does the clinical interview argument. A good clinical interview is always important and maybe even a lost art in this era of high tech diagnostics, but wouldn’t it be nice if the average time to diagnose some of these conditions wasn’t 5-10 years?

This brings me back to Dr. Mulley and his discussion on ending avoidable ignorance in healthcare. The responsibility, Dr. Mulley contends, rests with the patient. As a supporter of the e-patient movement, Dr. Mulley believes patients have the responsibility to educate the physicians and other decision-makers about what’s important to them. He says “unless we know what you care about, we have no information to inform investment or disinvestment” in any particular area of health.

In this context, it becomes clear, that maybe as patients, we have failed to own up to some of our responsibilities. Menstrual cycle disorders are uncomfortable to talk about. Who really wants to talk about never ending periods or blood clots—that’s just gross. And pain, one shouldn’t whine about menstrual pain, it’s unbecoming. Then there is the brain fog, fatigue, moodiness— all part of being a woman, or at least that’s what we’re led to believe. What if this isn’t normal? What if we, as women, are relegating our health prospects to ignorance? The Susan G. Komen Foundation did not come to prominence through silence, neither did the Endometriosis Foundation of America or any of the other women’s health organizations.

It is when we begin talking to each other and to our doctors that we can make it clear that these things are important; that the paucity of women’s health options is not acceptable. We need to become experts in our own health, to discern what’s normal and what’s not. We must drive the discourse, guide the research and build understanding for ourselves and our own well-being. We can’t wait for someone else to do this for us. Ignorance can be avoided.

See the full video clip with Dr. Mulley.