Once a year, review bone-specific topics as part of your annual health check-up with your primary care physician. Discuss what you have been doing and decide whether anything needs to tweaked. General lifestyle factors are a good topic for discussion, too, not only for your bones but for the rest of your overall health.
Just as with measuring blood pressure and cholesterol to see if diet, lifestyle changes, and/or medicines, are improving your health, you can also measure prevention and treatment steps for osteoporosis. Measurement of height, bone density, and bone markers may be helpful. None of these tell the “whole story,” since other factors such as nutritional status, muscle strength, and balance also contribute to fracture risk. These factors should also be included in your routine evaluation.
HEIGHT
Having your height measured once a year should be part of your annual physical with your primary care physician. Height loss may be a clue that a silent spine fracture has occurred over the past year. If you have lost an inch of height, your doctor should search for an underlying cause. If a DXA is planned, a scan of your entire spine (vertebral fracture assessment) can be performed to look for silent fractures. Another option is a lateral spine x-ray (thoracic and lumbar) to further investigate height loss.
DXA SCANS
The most precise way to measure response to therapy is repeating a bone density scan of your spine and hip. The repeat bone scan is usually done no sooner than one year after an initial scan. The recommended interval is two years because of expected changes in bone density with therapy. Also, insurance reimbursement is set at this time frame.
There is some controversy about length of time for follow-up scans and also whether they are needed at all when you are on therapy. Just as with any medicine, one size does not fit all. You may have had a similar experience with blood pressure or cholesterol. Some medicines may work well, others not as well. The medicines for osteoporosis were shown to be effective for the majority of subjects in clinical trials. However, those participants are typically not as diverse as the general population, since study participants are thoroughly screened to eliminate other problems that may have an impact on bone. In addition, study participants are monitored closely to ensure that they take their medicine as directed. As with treatment using any other medicine, you want to monitor its effect to make sure it is working. DXA is currently the best method available. Bone density is the best surrogate measure for bone strength. It is not perfect by any means but no surrogate measure is.
If you start on a bone-specific medicine, expect the greatest improvement in the first two years, with a smaller improvement in the subsequent three to four years. In general, you will have a larger increase in bone density at the lumbar spine than at regions of the hip. It may take longer than the first two years to see a significant change at the hip.
The definition of treatment success or “response to therapy” is bone density that remains stable or increases. A gain or loss of bone density must be “statistically significant” to be clinically meaningful. All scientific measurements have a degree of variability between repeat readings. The machine, the patient, and/or the technician performing the test can influence a DXA measurement. Each DXA center should have a calculation for its variability in doing follow-up tests. The interpretation of the test results should take this variability into account to determine if the change seen on your bone density exceeds the range of variability for that DXA center and is therefore considered to be a clinically important difference.
If bone loss that is statistically significant occurs while you are on therapy, reasons for the loss need to be investigated. A new problem may have developed since the initial evaluation was conducted. With aging, some illnesses that affect bone become more common. A previous evaluation may not have uncovered a hidden problem. Other problems can masquerade as postmenopausal osteoporosis. Low bone density itself does not equal osteoporosis.
- Twenty-four-hour urine for calcium, sodium, and creatinine
- Complete blood count (CBC)
- Erythrocyte sedimentation rate
- Liver enzymes and albumin
- Calcium and phosphorus
- Kidney tests: creatinine, blood urea nitrogen
- Thyroid hormone and TSH
- Vitamin D
- parathyriod harmone (PTH)
- Antiendomysial antibodies or equivalent for celiac disease
- Multiple myeloma screen
- PSA and testosterone for men
- Bone turnover marker
Your clinical situation will determine which tests are ordered in looking for other causes of bone loss. These are some of the tests that may be ordered. A twenty-four-hour urine collection should be done for everyone with osteoporosis. Yes, it is cumbersome to collect but it is also necessary.
BONE TURNOVER MARKERS
Bone turnover markers are complementary to DXA scans. As a dynamic measure, markers provide another tool to quantify response to therapy. Instead of waiting two years for results from a repeat DXA, bone markers can be used to see the effect on bone metabolism in a matter of days or months, depending on the medicine. However, bone markers have not been widely used because of their variability. In general, a change of 30 percent or more is considered significant.
Bone turnover markers are helpful as part of your evaluation if you have lost bone density while on bone-specific medicines. For example, the results of markers may suggest that the medicine is not being absorbed.
YOUR STORIES…
Rosemary, age seventy-three, started Fosamax after a screening bone density showed that she had osteoporosis. She is taking generic alendronate now and has been on therapy for a total of eight years. She had two follow-up DXAs that showed good response to therapy and she had no fractures. Her last DXA was four years ago. This year, she asked about going off of her medicine for a “holiday.” Her doctor ordered a bone density. This time, it showed a significant loss at both the spine and hip.
Her doctor ordered additional tests, which revealed a slightly high calcium blood level and a high parathyroid hormone level. Everything else was normal, including a vitamin D level of 46. The blood test suggested a problem called “hyperparathyroidism,” which is when the parathyroid produces too much of its hormone. High levels of parathyroid hormone cause bone loss.
A special scan of her parathyroid glands (four of them sit adjacent to your thyroid, which is located in the neck) showed that one was larger in size and quite active. She was referred to a surgeon who successfully removed the culprit, called an adenoma. This resolved the cause of her bone loss. She continued on a regimen that included good nutrition, vitamin D, calcium, exercise, and alendronate.
WHAT IF YOU FRACTURE?
The goal is to reduce your risk of fracture. Medicines, with even small changes in bone density, may decrease fracture risk by about half. Medicines reduce risk but do not eliminate fractures.
Should you change your medicine after a fracture? The temptation is to make a switch. Reassess. Look for other factors that could contribute. Did you start a new medicine or develop another problem? Go back to square one. The same evaluation used for assessing bone loss applies. Do you need to work on balance and build up core muscle strength to prevent falls? Talk with your doctor about lifestyle, nutrition, exercise, calcium, and vitamin D.
Although the measurement of height, bone density, and bone markers is useful, these measures don't account for all factors, such as bone microstructure, or those factors not associated with the skeleton, like fall risk. Studies suggest that taking your medicine as prescribed is itself a good predictor of success in reducing fracture risk.
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The Bare Bones Success” is measured by…
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Living and Coping with “Osteopenia” and Osteoporosis
“Osteopenia” is not a disease. Strike this word from your vocabulary. That is what the experts in the bone field are doing. “Low bone density” is the term replacing osteopenia. Why is that? The attempt is to try and disassociate the finding of low bone mass with disease. A T-score on DXA between -1.0 and -2.5 is “low bone density.”
Thin bones do not necessarily mean weak bones. Your fracture risk is what is important. In fact, the majority of fractures occur in women with low bone mass. Age is a huge factor. Measurement of bone density does not account for the microstructure or the fragility of bone that occurs with aging. That is where fracture risk assessment comes in to play. The use of tools like FRAX will help determine if you are at high risk. The younger you are, the less likely you are to fracture. Age and previous fracture are major risk determinants.
In addition, you cannot go by only one bone density test. One snapshot in time will not tell if your bone density is stable or if you are at risk for fast loss of bone in the next year.
Assess your risk with your doctor. By having a bone density measurement, your awareness of your bone health is increased. In addition, knowing those numbers forces you to re-examine your lifestyle and hopefully make positive changes to improve your bone health and overall health.
DIAGNOSIS OF OSTEOPOROSIS BY BONE DENSITY ALONE
Discovering you have any “silent disease” is always a shock. You most likely had the test just because your doctor recommended it but you did not expect to find anything wrong. Emotions run high after learning a test is “abnormal.” A new diagnosis creates an instant sinking feeling. I, myself, have had that reaction. I know how traumatic it is.
Dealing with a new diagnosis of low bone mass or osteoporosis is challenging. All of a sudden, there is a major imbalance between how you look (healthy) and how you feel (fragile, vulnerable). You are in disbelief. You feel frustrated. Typically, the first question is, “How can I have osteoporosis when I am healthy and I have done everything correctly?”
As an eternal optimist, I ask you to see the glass as half full. It is better to know than to not know. Once a silent problem is uncovered you have the advantage of being able to do something positive about it. Just as when you discover that you have high blood pressure or high cholesterol you can take steps to improve those conditions to decrease your risk of heart attack or stroke, you are going to do the same with osteoporosis and take steps to lessen your chances of fracture.
Do not panic. Although there is no cure, you have plenty of options to help you strengthen your bones and decrease your risk of fractures. Learn all you can. Share the information with your family members so that their awareness is heightened and they can offer you support.
After your discussion with your doctor, do not feel “rushed” into anything, especially when you may be skeptical about taking medicines. It is natural to be terrified of medicine and possible side effects. By getting the facts and carefully weighing the risks and benefits, hopefully you will be able to make better-informed decisions.
You have time to decide about what do. In the clinical trials, women diagnosed by bone density who had not experienced fractures continued to have low risk of fractures over three years regardless of treatment assignment. Those in the placebo group, who took calcium and vitamin D, having become conscious of their diagnosis, also improved their lifestyles. As a result, they, too, had low numbers of fractures.
In most cases, bone loss is a very slow process, so take your time, do your research, change your diet, and increase or augment your exercise. But if you are eighty-plus or are experiencing rapid bone loss from taking medicines like steroids or aromatase inhibitors for breast cancer, you do not have the luxury of time. You need to make a treatment decision.
Start by taking small steps. Do not try to change everything at once, although that is what you may feel you should be doing. Make an intelligent plan.
Attention to detail and lifestyle is essential. Daily exercise, a well-balanced diet, adequate calcium intake, and vitamin D supplementation are keys to bone health. Be sure that any other problems are well controlled. Even if you are already doing all of these things, there will still be room for improvement. You will have to make some adjustments in your physical activity, such as learning to lift objects by bending your knees and activating your core muscles—instead of bending forward. However, do not think that you should stop physical activities altogether.
Beware of information overload! Support groups are a wonderful way to meet others who have similar concerns and interests. Members of support groups share stories and knowledge and can help you sort out all of the new information you will have to confront. They still do happen in various communities on a regular basis but in the new media era, support groups are more readily available via the Internet. You will have twenty-four-hours-a-day, seven-days-a-week backup.
If you want to talk with someone locally and a support group is not available in your community, ask your doctor if there are other patients who might be willing to talk with you. Also, a support group does not have to be disease specific.
DIAGNOSIS WITH FRACTURES
Falls should not result in broken bones. One study even suggests that fractures with trauma may be related to underlying structure problems. Under normal circumstances, a fall from standing height, even if you “hit hard,” should not cause a fracture. Many times, you or even your doctor may not connect the dots that you have a bone health problem that needs attention. Even if your bone density shows that you are above the “osteoporosis” range, the fact that you have fractured means that your bones are fragile. If an evaluation to look for other causes finds none, you will be diagnosed with osteoporosis based on the fracture.
Many people are shocked to find out they have osteoporosis after they have sustained a fracture. It is discouraging to learn that the odds of another fracture occurring right away are high and that this high risk persists for about ten years. Once again, the cup is half full. There is always a positive solution to every problem. Armed with your new knowledge, you can make a difference to lower your risk. It will take some energy and persistence to get there but you can achieve it.
When fractures negatively impact your physical quality of life it is difficult to maintain your mental quality of life. Unfortunately, little attention is paid to the emotional ramifications and burden of fractures. Medical professionals tend to focus on the physical aftermath of problems associated with fracture without including psychological impact. In addition, if fractures have changed your physical appearance, redrawing your body image is scary.
It is healthy to express fears. Keep talking. Keep connecting. You will find help where you least expect it. You may complain that others do not realize or cannot understand the emotional turmoil caused by fractures. The feeling of being alone, in any situation, is difficult to cope with. Emotional support is paramount. Connect with others; this is how communities and support groups work.
Expert Medical Advice:
Asking the Right Questions
Your primary care doctor—internist, family physician, or obstetrician/gynecologist—is the person who takes care of your general health needs and bone health. This doctor is a fundamental part of your overall health. As part of your annual check-up, talk with your doctor about bone health. If you are over fifty, you should see your doctor at least once a year, even if you do not think it is necessary.
An informed patient gets the best care. You have to be your own advocate. If your doctor does not mention bone health, you will need to raise the topic and initiate the discussion. You will have a lot to cover with him, and the subjects may run the gamut from your mother's health to your marital problems.
YOUR ANNUAL CHECK-UP
The challenge for your annual primary care doctor's visit is covering everything in a short amount of time. Your doctor will have an agenda and a scheduled time allotment. He will want to talk with you, perform a physical exam, make healthcare plans, and counsel you. In addition, you have topics that you will want to cover. It may be difficult to thoroughly cover both of your agendas.
Therefore, prior to your visit, make a list to help you better organize your medicines, your questions, and your concerns. Place all of your medicines and supplements in a bag and take them with you to your appointment. Do not take only a list of your medicines and supplements. Hand your questions to your doctor or his staff when you are taken to the exam room. However, time may not allow absolutely everything to be addressed. In addition, information from more blood work or other tests may be needed in order to answer your questions. Schedule a follow-up appointment to continue the dialogue and the process.
For bone health, questions you may ask depend upon your age or your stage of life. Everyone, no matter what age, should discuss daily calcium and vitamin D requirements, exercise, and nutrition. For women in the transition to menopause or postmenopause, questions should include when to measure your bone density. Bone density serves as a basis for your assessment of fracture risk, along with other factors from your medical history.
Questions You Should Ask Your Doctor
- How much calcium do I need each day?
- How much extra calcium should I supplement to my diet?
- How much vitamin D supplement do I need?
- Should my vitamin D level be checked as part of my annual lab tests?
- Do you have exercise and diet tips to recommend?
If your bone density is in the osteoporosis range, it does not automatically mean you have postmenopausal osteoporosis. Further testing may be indicated to look for other causes. Postmenopausal osteoporosis is the most common reason for low bone density; even so, make sure everything else is “normal.” Vitamin D is the most common abnormal test. If no other problems are found, discuss your options for therapy. You may want to work on optimizing “everything else” in your lifestyle before beginning a medicine. Unless you are losing bone quickly due to a medicine such as steroids or you have had a previous fracture, time is on your side. Take it one step at a time. You need to work on reducing the risk of falls. This is paramount at any age.
Questions to Ask When You Are Perimenopausal or Postmenopausal (Men Should Ask, Too)
- When should I get a bone density DXA scan?
- If you have already had a DXA scan: When should I get another one?
- If your bone density is low: What is my risk of fracture?
- If your bone density is in the osteoporosis range: What other tests will I need to undergo to look for other causes?
- If I am at high risk for fracture or have osteoporosis: What are my options?
When should you ask about seeing a specialist or getting a second opinion?
Most of you will be well taken care of by your primary care physician. A primary care physician can manage the majority of people with osteoporosis. At times, the evaluation or treatment may be beyond either the level of expertise of your primary care doctor or his comfort zone. In some situations, a second opinion or consultation with a specialist is helpful. For instance, if you do not have a “typical” presentation, are not responding to therapy, or have other problems complicating the picture, referral to an osteoporosis specialist should be considered. Your comfort zone is important, too. If you feel a second opinion would be beneficial, raise the issue with your doctor.
Second Opinion
When a referral may be appropriate:
- Young individual with fracture not due to trauma
- Normal bone density, but fractures anyway
- Unusual laboratory findings on the evaluation
- Declining bone mineral density while on therapy
- Fracture while on therapy
- Unable to tolerate therapy
- No desirable therapy choices
- Multiple other illnesses
- You and/or your primary care physician want another opinion
There are no board qualifications for doctors specializing in osteoporosis. In your community, the specialists who have a focus on osteoporosis may be endocrinologists, rheumatologists, or sometimes a nephrologist or geriatrician. Your doctor will know which specialist is best for you. Many university medical centers have an osteoporosis center or metabolic bone unit. Finding a specific type of doctor is less important than finding a doctor with knowledge.
In addition, your choices may be limited to what is available through your insurance or healthcare plan. If you want to go to, or your doctor wants to send you to, a doctor whose services are not covered, you may need to pay out of pocket for the consultation. Most specialists' consultation costs are in the $200 to $300 range. If you are paying on your own, a discount may be available. Also, any additional testing recommended by the consulting doctor may be directed to your primary care physician who can order the tests.
YOUR STORIES…
Tara, age fifty-four, started on Fosamax after her baseline DXA showed osteoporosis. Her lowest T-score was -2.9 at the lumbar spine. Her two-year follow-up DXA revealed a significant loss of six percent at her lumbar spine. She had some additional testing done. A low vitamin D blood level of 18 ng/ml was discovered. Her physician recommended that she take an additional 1,000 IU a day of vitamin D on top of her calcium supplement of 1,200 mg a day, which also contained 400 IU of vitamin D.
She was scheduled for a repeat bone density in one year because of her physician's concern over the bone loss even in light of her vitamin D deficiency. In the interim, her vitamin D level was rechecked during the summer and was 42 ng/ml. On the new one-year follow-up DXA, her spine showed loss again and the hip density was not significantly different. She and her doctor decided that a further investigation was needed and an endocrinology consultation was requested.
The endocrinologist reviewed her medical history and laboratory records and performed a brief physical examination. He ordered several tests not previously done to look for possible hidden causes. Her vitamin D level drawn in March was lower at 27 ng/ml. Her twenty-four-hour urine showed too much calcium. The rest of the tests were normal.
In reviewing total calcium intake, the endocrinologist determined that she was taking more than she needed. Her diet and supplements averaged a total of 2,200 mg a day. Therefore, he advised her to decrease her calcium supplement use from 1,200 mg a day to 400 mg of calcium citrate. In addition, he increased her supplemental vitamin D to a total of 2,000 IU a day.
After six weeks of an average of 1,200 mg of calcium daily from diet and supplements, she repeated the urine collection. The follow-up twenty-four-hour urine was still high in calcium. The next step to decrease the calcium loss in her urine was the use of a water pill called a thiazide diuretic in low dose. Another urine collection after eight weeks of taking the diuretic resulted in the normal range for calcium. The new diuretic therapy was effective in preventing excessive calcium loss in her urine. Her endocrinologist expects to see a bone density increase the next time it is checked, in one to two years.
Sometimes it is challenging to find doctors who will listen to you and take the time to answer your questions and concerns. They definitely exist, and I believe that they are in the majority. If you are not happy with your current arrangement, let your doctor know which of your needs are not being met. If you cannot accommodate one another, it is time to find someone else. Having a doctor with whom you can communicate is crucial to your health.
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The Bare Bones
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