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I first considered having a bone density test when I turned forty a few years ago, but not because I was overly concerned about osteoporosis, ironically. I had decided I was done with childbearing after having three perfectly healthy, wonderful children. I had always thought that I should strongly consider having my ovaries removed preventively, since my mother succumbed to an incredibly virulent form of ovarian cancer in the prime of her life. In addition to my family history, one of the important components of this decision was determining my risk of osteoporosis. As an osteoporosis specialist, I had ready access to bone density testing-the only way to accurately determine osteoporosis risk-but I had never had the test done because I was always either pregnant, nursing, or anticipating becoming pregnant.
Even though I'd been meaning to get the bone density test, what directly precipitated my going in was that a good friend of a similar age was having a screening colonoscopy (her father had died from colon cancer). We had also both had our first mammograms about a year or two earlier. This seemed like a good time to round out the medical picture.
I didn't anticipate anything dramatic in my bone density measurement results. My guess was that I would be close to average. I was always of average size, had regular menstrual periods, no significant smoking history, no excessive alcohol intake, good basic nutrition, and fairly regular exercise. I have always been strong and healthy. Nothing to worry about.
How wrong I was! It turned out that my spine bone mass was in the lower 1 percent for my age. That meant I had full-blown osteoporosis, with a spinal bone mass T-Score of -2.7. Comparing my age-matched results (Z-Score) to those of a majority of my patients, my bone mass was worse than almost all of them. Of course, I repeated the test a few times; it just couldn't be right, but all the results came out very similarly. I was numb with the fear that my back would crumble, I would become deformed and disabled, lose six inches of height, and suffer from chronic back pain, when just ten minutes earlier I'd been a healthy young woman with an absolutely fantastic life.
I shared my bad news with everyone-especially my friends and colleagues at work. We joke now about how I mentioned my bone mass every single day at our daily lunch for at least a year. Every time I came down from the outpatient department at my hospital after seeing patients, I mentioned that my bone mass was far worse than anyone I had seen that day. I had some blood and urine tests done to try to exclude any possible underlying diseases that might cause such a low bone mass. These tests didn't reveal much of anything.
In the days when I first began working in the osteoporosis field, I would have definitely recommended a bone biopsy in a person such as myself. Bone biopsies were occasionally done in patients with particularly low bone mass for their age to help exclude other diseases and to try to gauge the underlying bone turnover rate. Doctors are not doing many of these anymore, except for research purposes. Blood and urine tests have largely taken over for both of these purposes.
I remembered that my mother had had some compression fractures of the spine, seen on X ray, when she was having tests done for the abdominal discomfort that ended up being ovarian cancer. At the time, it was just an incidental finding, of little importance compared to her primary disease. My brother said she often had backaches, though she never complained of any serious back pain and never sought medical advice. She stoically worked through any pains or illnesses. She did have a bit of a stooped posture and had lost some height from her peak at five feet, eight inches. This was 1987, a time when there was little discussion about osteoporosis and bone density tests were not yet standard medical practice. Little was known about prevention or treatment, so I put this out of my mind. However, there is no doubt that having a family history such as mine puts you at higher risk for having the disease yourself. In fact, it may be one of the most important factors.
In assessing your risk of osteoporosis, you must be familiar with the medical history of your parents and grandparents. Many people think that if you have osteoporosis, it always means that you've lost a lot of bone. In fact, you might just have been born with very low bone mass. I'd like to be able to say that I started taking a pill and now everything's fine. That may be the case in a few years, but at the time, because I was so young and still premenopausal, there was very little that I could do about my discovery. In terms of general preventive measures, I had already begun taking calcium supplements and trying to modify my diet to contain enough total calcium. I had already embarked on an exercise program, including both jogging and strength training. I didn't smoke or consume excessive alcohol. I wasn't on any medication that could be altered. My periods were totally regular.
And since there weren't (and still aren't) medications proven safe or effective-or approved by the Food and Drug Administration (FDA)-for the treatment of otherwise healthy premenopausal women, I couldn't take any kind of miracle pill. With one exception (PTH or parathyroid hormone), the medications currently on the market work by returning the bone turnover process from the accelerated levels seen in postmenopausal women to the normal levels of premenopausal women. The drugs simply slow down the bone loss process. If bone turnover levels are in the normal premenopausal range to begin with, there is less of a potential effect that these medications could have on bone metabolism. In general, premenopausal women manifest little total skeletal bone loss until they reach the perimenopausal phase of life. So it's likely that these drugs wouldn't work so well in a healthy premenopausal woman.
The one possibility open to me was to try the oral contraceptive pill. There had been a few studies suggesting that women who took the pill had higher bone mass than women who did not. I also thought it might be wise to try the pill for other reasons-namely, its use in premenopausal women has been linked to a reduction in risk of ovarian cancer. I thought I could take care of two problems with one pill, but when I tried a few different preparations, they all left me nauseated and lethargic. I simply couldn't tolerate them. Furthermore, I was unlucky enough to require a breast biopsy about a year after all of this, and the open issue about whether oral contraceptive use might be associated with a small increase in the risk of breast cancer made me feel less sure of the option. Finally, the potentially positive bone effects of the pill were not, and are still not, proven.
So I was a healthy forty-year-old woman with osteoporosis and nothing to do except follow the preventive measures that all of us should be practicing anyway! It was obvious to me that when I reached menopause, I would need some type of medication, and probably should continue taking one for the rest of my life. There was no evidence that anything active was going on in my skeleton; it was likely that I happened to have been born with an extremely low bone mass, largely due to genetic factors. But I felt fine! Osteoporosis is a symptomless condition for many years or even decades. The major challenge at that point was to work on my psychology. Did it make sense to limit my activity to prevent fractures? No way. Not surprisingly, I had never had a fracture-fractures from osteoporosis are exceedingly rare in premenopausal women, even with low bone mass. I simply needed to forget about this until the time when my periods became irregular and continue doing what I was doing anyway. Of course, this was a bit hard to do considering that I was confronted daily with the often devastating consequences of the disease. Additionally, there is not a single day of my professional life that I don't look at one or more bone density test results.
Ultimately, this is why I am opposed to routine bone density screening in premenopausal women. (This does not mean that women with specific diseases or on certain medications should not be tested or treated. In otherwise healthy women, however, it should not be routinely done.) Many young women come to see me after a bone density test with results substantially higher than those I had. Some of them have been told they have severe "bone loss" and have already been put on medicines without proven efficacy or safety in their age group.
Some of these women may be having children in the near future, and the impact of these drugs on fetal development is unknown.
I am extremely sympathetic to these young women, since I know the fear they have to face. It is a true psychological challenge; I don't think that finding out about osteoporosis at an early age, when there's nothing you can do about it, is necessary or even healthy. Some people would argue that getting a test may help younger women stick with good preventive measures, but there is little evidence to support this argument, and it is hard to justify the cost of these tests in a medical system already overburdened with expenditures.
That said, it's imperative to find out about your osteoporosis risk at the time of menopause, or at the latest by the age of sixty to sixty-five. It would be irresponsible to be ignorant of a diagnosis for which treatment can dramatically modify the course of the disease. This is why I stress throughout the book that we should concentrate our diagnostic and treatment efforts on older individuals, in whom the probability of osteoporosis is much higher, the frequency of fracture occurrence is much higher, and the effectiveness of treatment has been tested and proven.
The fear and worry that I've personally experienced in my battle against osteoporosis have helped me generate a unique professional perspective and empathy for my patients. Humor, perspective, and the certain knowledge that there will be medications available when I need them are what help me cope with my condition. There is also comfort in knowing that I am doing everything I can at this stage, and will continue to do so in the future, to prevent myself from suffering from the consequences of osteoporosis. I fervently hope that readers of this book will come away with similar knowledge and comfort.
Excerpted from What Your Doctor May Not Tell You About Osteoporosis by Felicia Cosman Copyright © 2003 by Felicia Cosman, M.D.
Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
|Part I||Understanding Osteoporosis||1|
|Chapter 1.||My Personal Journey||3|
|Chapter 2.||What Is Osteoporosis?||9|
|Chapter 3.||The Architecture of a Disease||22|
|Part II||Preventing and Slowing the Effects of Osteoporosis||35|
|Chapter 4.||Prevention: The Universal Message||37|
|Chapter 5.||Prevention Step One: Reducing Risk Factors||40|
|Chapter 6.||Prevention Step Two: Nutrition||49|
|Chapter 7.||Prevention Step Three: Exercise||72|
|Chapter 8.||Prevention Step Four: Supplements and Vitamins?||89|
|Part III||Diagnosing Osteoporosis||101|
|Chapter 9.||Are You at Risk?||103|
|Chapter 10.||Getting Tested: Measuring and Reporting Bone Mass||112|
|Chapter 11.||Blood and Urine Tests and Radiologic Procedures||129|
|Part IV||Medication and Treatment||141|
|Chapter 12.||Fracture Care and Rehabilitation||143|
|Chapter 13.||Medication for Osteoporosis in Women||158|
|Chapter 14.||Estrogen or Hormone Therapy||165|
|Chapter 15.||Selective Estrogen Receptor Modulators||182|
|Chapter 18.||Parathyroid Hormone||214|
|Chapter 19.||Non-FDA-Approved Treatments||226|
|Chapter 20.||Monitoring Treatment||235|
|Part V||Special Cases||241|
|Chapter 22.||The Premenopausal Woman||249|
|Chapter 23.||Osteoporosis Associated with Steroids||256|
|Afterword: The Future||263|
|Appendix A||Interpreting Medical Evidence||265|
|Appendix B||Web Sites with Good Information about Osteoporosis||277|