hormones - Page 9

Underinsured, Underdiagnosed and Anonymous: My Hormonal Hardships, Part 1

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It all started in my late teens. Recent high school graduates, my then-boyfriend and I were on our way from O.C. to L.A., when a driver entering the freeway rear-ended us as they were coming off the 91 onramp. A suddenly totaled car and severe case of whiplash quickly changed our prior plans, sending us instead to the local E.R. for immediate medical attention. A series of rush diagnostic tests later, my CT and MRI scans confirmed that I had suffered a C2 cervical neck-spine fracture with lumbar nerve involvement in the collision. I was fortunate to be alive, and luckier still to have survived without brain damage or paralysis, but I would not be simply walking away from this, either. Quite the reverse, it was actually just the beginning of a long battle to come.

Injuries sustained from the crash had triggered a myriad of chronic side effects and secondary conditions, including (but hardly limited to) chronic pelvic pressure, lower back pain, hip misalignment, fatigue, dizziness, and at that time, as-yet “undiagnosed hormonal issues.” I was 19, hurting, scared, and tens of thousands of dollars in debt overnight, due to my emergency room stay, all, through no cause of my own. Having to drop out of college to go through rehabilitative therapy and further hormone assessments over the next couple of years only seemed like more of an end-all to my young future back then. Launched head-first into a cold, cruel world of consistently inconclusive diagnoses and expensive, limited healthcare options, I truly felt the social stigma of being sick and uninsured. Splitting up with my high-school sweetheart a mere few years later, in no small part, because he wanted to have “children of his own”, I also really grew to feel the societal shame of being female and infertile, as well. So, I found myself dually disheartened as my abdominal pain and pressure continued to worsen, going on undiagnosed and untreated clear into my early twenties, despite the ever-growing list of costly blood labs, urinalyses, ultrasounds, and other screening tests, that my doctors had already exhausted.

Even with an employer-provided PPO, it would still be almost five years before any specialist would finally suggest what might be wrong with me (maybe endometriosis, maybe not), or explain what could have caused my prospective condition (maybe trauma from the earlier wreck, maybe not), much less tell me about potential treatments (oral contraceptives, laparoscopy, hysterectomy, or just plain living with the pain and hoping for the best). I was again referred to yet another gynecologist for yet another pelvic sonogram when, at long last, the ultrasound image revealed the suspected endometrial mass, once and for all (or, so we thought). The new gyno’ subsequently diagnosed me with endo’ and put me on low-dose combo estrogen-progesterone birth control pills, taken seasonally, as an alternative to surgery and nerve damage risks. The pill helped relieve some of my symptoms for a while, but it was far from being a permanent cure to my ailment, and ultimately became much more of a curse than a relief to me. Additional complications from an unexpected, ruptured ovarian cyst, followed by an increasingly negative response to the synthetic hormones, also lead to questions about my original diagnosis and method of treatment. Did I have endometriosis at all…was it something else entirely…what do I do now…what do I do next? …

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Redefining Healthcare for Women

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As the dust settles on the Komen Foundation decisions of last week, I am reminded once again how compartmentalized and politicized the notion of women’s health has become.  Boobs and wombs seem to represent the sum total of interest in women’s health.  And if the Komen fiasco is any indication, one can’t care about both, because where one stands or one’s employer stands on reproductive issues is now becoming the litmus test that permits or denies access to care. If you are a woman, that is. No such criteria exist in men’s health.

Women’s health is inherently political. We carry the responsibility of continuing the species. With that responsibility inevitably comes intrusion (no pun intended). We seem to forget, however, that women have cancer (not just breast), heart disease, diabetes, immune diseases and the whole host of illnesses that are unrelated to whether or not we bear children. Certainly, whether we have born children impacts these diseases, more so than many are willing to admit, but what we think about birth has nothing to do with our health and should have nothing do with our access to healthcare.

As a private organization, Komen has every right to change its mission. It has every right to fund only those organizations that align with their political or religious views. If it believes strongly in those views, then it should change its mission and hold to it.  However, Komen should be prepared for mass defunding from those who don’t share the same ideology. Early signs of this were evident last week.

There is no delicate or politically adroit way around this issue for Komen and other organizations who believe that views on reproductive rights trump a woman’s access to healthcare or an agency’s access to research funding. If that is the litmus test, however, then say so. Take the stand and own the results. Tell the world that your organization provides preventative healthcare, supports breast cancer research and other activities only for some women and only for organizations that share your views.

Then let the rest of us get on with the business of providing healthcare and research for all women.

Data Matter

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A dirty little secret in medical literature, systematic reviews are only as strong as the individual studies they examine. And when negative data are not published in the major medical or scientific journals, as is commonly the case, these reviews cannot help but be skewed.  A report by the British Medical Journal found that when outcome data were re-analyzed to include the unpublished data for 42 previously FDA-approved drugs, a whopping 93% of the outcomes changed.

All data matter, especially in medicine.  With systematic reviews and meta analyses, the gold standard in scientific publishing, researchers seek to make claims about a particular drug or health event based upon the totality of the published research. Physicians and other scientists use these systematic reviews to guide decision-making. Prescribing a drug based upon the positive findings of a systematic review gives one considerably more confidence than doing so based upon a few unrelated studies. When the systematic reviews are based upon insufficient reporting of negative or null results, the review is likely inaccurate.

Publication bias, as it is called in research circles, is a well known problem to many. By nature, scientific journals gravitate toward positive and novel results, in much the same way TV news reporting tends toward negative, salacious events. Both are clamoring for market share. Unlike in TV news, bias in the research industry can and does have serious consequences when medical-decision making rely on those results. Noted physician and medical blogger Harlan Krumholz, contends that medicine’s biggest threat is not some exotic virus, but missing data.

Case and point, when data about adverse events are withheld from publication, bad drugs, such as Vioxx are released into the market place and presumed safer than they actually are.  A similar scenario is emerging for Yaz/Yasmin. These birth control pills are currently facing a bevy of lawsuits  for some serious adverse events.

So what is one to do, who does one trust?  I don’t know the answer to that question, but I think that good first steps include transparency and open access to data and research. As a patient, this includes access to scientific and medical research as well as access to our own medical data. As we report in the stories below, access to research is at risk if the Research Works Act passes.

A next step is to demand all data be published in drug studies, the good, the bad and the ugly. The British Medical Journal reports, those data are available in many, but not all cases, through FDA and other repositories. However, culling and analyzing those data along side the published reports is no easy task.

Perhaps a third option, is post-market crowdsourcing. Granted, not the best option when dealing with potentially dangerous therapeutics, but in this new environment of empowered patients and big data, crowdsourced research is becoming more common. The organization adverseevents.com is aggregating patient-reported adverse reactions to medications. It’s freely available to patients and physicians globally. A myriad of other companies have come on the market in recent years to crowdsource the research for all sorts of medical conditions. These companies offer patients the opportunity to participate and learn directly from the research conducted. Unlike traditional clinical research, the data and results are not cloistered, but are open and readily accessible.

In the end it all comes down to data and how we use it to make decisions about our health.  I believe data matter. I believe data ought be open and accessible. What do you think?

Participate in Crowdsourced, Post-Market, Adverse Events Research

Take a few minutes to complete a survey about the medications and surgical procedures you have utilized. Take as many health surveys as are applicable and share the surveys with your friends. All surveys are anonymous and completely voluntary. We’re adding more surveys every month, so check back frequently or sign up for our weekly newsletter to keep abreast of the latest research news.

Take one of our health surveys:

Crowdfund Research on Medications that Matter to You

Lucine Health Sciences and Hormones Matter, are unfunded and run by Dr. Chandler Marrs along with a cadre of dedicated volunteers. We know the work we do is important and needed and so we’re doing it anyway, despite the lack of funding. We’re bootstrapped to the nth degree, but determined to fill the critical data void in healthcare, one study at a time.

We’ve set up an unsubscription model to fund our education and research programs. We call it an unsubscription because it is not really a subscription in the true sense. It’s just a mechanism to fund the work that maintains our commitment to open access health information on Hormones Matter.  By purchasing an unsubscription you are supporting our continued operations and research; research and health information we all need but can’t get anywhere else. To help fund additional research: Crowdfund Us.

 

The Stress of Modern Living

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I’m stressed, my friends are stressed, and let’s face it, the entire nation is stressed. In modern life, we’re bombarded with the daily list of to dos, the noise of 24 hour news and cable, the incessant activity of the internet and in the current economy, the constant threat of job loss and financial insecurity. True, the stressors we face today compared to those faced by previous generations are not generally life-threatening, but they are deadly, just over a longer period of time.

Chronic stress, the underbelly of modern life (pun intended), is perhaps as much to blame for the increased rates of obesity, cardiovascular disease, and diabetes as are other lifestyle variables such as diet and exercise. Our physiological responses to stressors were meant to be acute, short-term adaptations that allowed us to survive an immediate threat. The chronicity of modern stress has turned a very basic survival mechanism into a death trap and I’m not sure we’ve fully evolved to adapt to this new, never-ending state of stress.

Think about what happens to the body when it is faced with a stressor; it mounts a physiological response against the stressor. It doesn’t necessarily matter what the stressor is, the physiological responses are quite similar. Have you ever noticed that the early stages of illness look a lot alike, GI disturbances, heart rate changes, loss of appetite, sometimes fever, aches and pains- that general feeling that you are coming down with something? This is your body reacting to an internal stressor, an illness.
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Cortisol: The Stress Hormone

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Cortisol is a steroid hormone produced in the cortex of adrenal gland. It belongs to a class of hormones called glucocorticoids and plays an important role in regulating cardiovascular function, blood pressure, glucose metabolism, sugar maintenance, and inflammatory response. Cortisol is best known as the stress hormone. It is released in response to stress, and is part of the fight or flight system.

Under normal conditions the body regulates cortisol levels which are usually high in the morning and low at night. But under stressful conditions more cortisol is secreted. Small increases in cortisol produce positive effects such as increased sustained energy, diminished pain sensitivity or memory enhancement. But a prolonged cortisol increase during chronic stress results in negative side effects: increased blood pressure, sugar imbalance in blood, decreased bone density, cognitive problems, and reduced thyroid function. It also slows down healing processes and suppresses the immune system, perhaps the reason we are more apt to get sick when we are stressed.

Continuously, stress-induced elevated cortisol levels lead to an increase in the level of other hormones (testosterone, estradiol, insulin).  High cortisol levels are often linked to insulin resistance (Type 2 Diabetes), weight gain and general inflammatory conditions. High cortisol is toxic to the brain and can cause memory loss and contribute to Alzheimer’s disease or senile dementia. Elevated cortisol levels and lack of diurnal variation have been identified with Cushing’s disease. Low cortisol levels are found in primary adrenal insufficiency (e.g. adrenal hypoplasia, Addison’s disease).

Cortisol and progesterone bind to common receptors in cells. Cortisol blocks progesterone activity, and some suggest, that high levels of cortisol, initiated by chronic stress, dispose one to a condition called estrogen dominance.  Estrogen dominance is condition where women cease to ovulate regularly and progesterone concentrations are lower than necessary during the second half of the menstrual cycle. Many suspect estrogen dominance underlies PMS and other cycle related symptoms.

Hormones and Mood

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Hormones and Mood: Most Women Experience the Mood Changes

Mood swings and depression can occur anytime in woman’s life. But women seem to be more vulnerable to mood changes during the time of hormonal fluctuations – peri-menopause, pregnancy, or their periods. Eighty percent of women acknowledge some increased emotional sensitivity before their period starts, 8-10% have severe ‘hell-on-earth’ mood changes the 2 weeks before their period. For some women hormonal flux can trigger mild to severe mood disorders including depression and bipolar disease. Postpartum depression can affect 10 to 15% of women and can last up to a year after the child is born.

Hormones and Mood: Premenstrual

Research suggests 8-10% of women experience PMDD (Premenstrual Dysphoric Disorder) which is characterized by severe moods swings, depressed mood, irritability, anxiety and physical symptoms (occurring exclusively during the luteal phase (weeks 3-4) and remitting within 3 days of the onset of menses.

Hormones and Mood: Brain Chemistry

Hormonal problems are believed to be linked to the imbalance in neurotransmitters that are directly responsible for mood state, particularly serotonin, norepinephrine, dopamine, GABA, and acetylcholine. Estradiol is a hormone known to affect mood. It increases serotonin and beta-endorphins that are associated with the positive mood state. Estradiol acts to increase neuronal excitability thus producing a brain stimulant-like effect.

Decreased level of estradiol was shown to be linked to panic attacks. Additionally low estradiol can cause headaches, foggy mind, memory lapses, and sleep problems.

The progesterone metabolite, allopregnanolone (ALLO), produces a sedating/calming Valium-like effect. ALLO works on GABA receptors in the brain and is a powerful anxiolytic, anticonvulsant, and anesthetic agent which decreases anxiety and depression.

 

More Turkey News: Big Breasts, No Sex

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A more humorous story for this Thanksgiving holiday; big breasts mean no sex for holiday Turkeys.  According to a recent Freakanomics report, our predilection for big breasted turkeys impairs turkey sex- the breasts get in the way of copulation. This has ‘forced’ commercial turkey farmers into artificial insemination.  There is not a Turkey on the market today, lest they be a ‘heritage’ turkey that has had the pleasure of sex. Nor for that matter, have most other livestock (90% of all cattle are artificially inseminated). Imagine if big breasts had the same effect on human sex.  Unnatural Turkeys: A New Marketplace podcast

 

We Cannot Manage What We Do Not Measure

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Pay attention to the whimper or be forced to cry uncle. Those are your choices. Those were the choices that faced the nation ten and twenty years ago as naysayers to the economic policies certain to bankrupt our country became evident, but they were ignored or lambasted as fringe. The collective wisdom forged forward with derivatives, with the merging of investment and saving banks, against the whimpers of many, only to cry uncle in 2008 as the catastrophe loomed.

As the ‘other 99%’ seek to realign our political and economic situations, women must lead the changes in the health industry. We must pay attention to the whimpers, to the evidence that something is off, and more importantly, we must take heed before uncle is cried. How do we do that within such a flawed system of industrialized, profit-based medicine? Education, measurement, transparency and responsibility.

Education. The number one factor contributing to health is education. The more educated women (and men) are the better health they experience. Why? Better decision-making. Although there are clear associations between income and health, the association between education and health is stronger.

Education allows one to navigate the morass of medical marketing, cut to the truth, and identify the untruth in advertising. Education permits women the confidence to seek alternate directions in health and not simply take what is prescribed to them as gospel. Quite simply, education permits responsibility in health choices. It doesn’t necessarily lead to taking responsibility or making the right choices; we’ve all seen really smart, highly educated people do really stupid things. Rather, education creates the environment where those choices can be made.
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