Osteoporosis Community

I had a grandmother who died from the drug therapies that she underwent in the 1980s for osteoporosis and I also have an aunt (her daughter) who was diagnosed with premenopausal osteoporosis. Both have warned me that I am very high risk for this disease and to insist on early detection for it. Dutifully each year, I asked about it at my annual exam and I was never taken seriously or given any advice on prevention for it. Now I'm 41 and finally underwent my first bone density scan (hip and spine) and I am told that I am osteoporotic! What is wrong with this picture? (I lead a healthy lifestyle, NO drugs, smoking, alcohol, exercise, and eat right. No other chronic health problems...)

Do you have IBS or any other disease like this? It can cause calcium absorption problems I was told. Do you drink cola drinks, diet or otherwise? That depletes your bones. Are you on predisone or steroids? That can cause problems too.

Dr. Lewiecki,
I asked my primary care doctor for a bone density test and was SURPRISED to find I had oseopenia. Two years later, I asked for another one. She made me promise not to ask again, but I found that my bone density had gone down since the first one. I do have IBS. I'm taking calcium and Vitamin D, eat very healthy and exercise a lot. I have diabetes and am on heart medicines.
How do I approach asking my doctor again after I promised not to ask? It's been almost 2 years since my last test. My healthcare facility pays for the test, but I'm sure the doctors were cautioned not to give them too often....cost?

Thanks for response. No IBS, no colas or caffeinated products(a dietary choice), no dieting as I only weigh 100 lbs! Like my original response, I don't take any drugs predisone/steroids legal or illegal drugs. I walk over 2 miles a day, I chase 2 little kids around all day (dressing, lifting, feeding, carrying, ect.) and I eat a well-balanced diet about 2300 calories per day and I don't drink or smoke. I just have a genetic predisposition to this disease; all women affected in my family were PREMENOPAUSAL when we were diagnosed! I just want some answers why the recommendation is 55 or 65 for the screenings when obviously there are exceptions to this guideline, again I am 41 and I probably had this for some years already. The first sign was a dentist in Europe told me three years ago that my teeth had a strange brown stain at the gum lines and that it wasn't really a stain more like an erosion of the teeth themselves!

The recommendation is for bone density testing is for all women age 65 and over and for younger women with risk factors. Family history is a risk factor.

As for a premenopausal diagnosis of osteoporosis, no such thing. A diagnosis is made on postmenopausal women and on men over the age of 50. Premenopausal women and men younger than 50 are given Z-scores as opposed to T-scores. The WHO (World Health Organization) makes the classifications.

That doesn't mean that you don't have low bone density and need to take steps to strengthen your bones. It just means that there is no diagnosis - which is a good thing when you're applying for life insurance or in some other legal situations.

Because you're so small, it may be that you never reached your maximum bone mass in addition to having a strong family history.

Because you're premenopausal and still producing estrogen, you can expect your scores to decrease as you go into menopause. So it's good that you're paying attention now and being proactive.

If you're not on birth control pills, I'd ask the doctor about taking them for your bone health. None of the meds currently on the market are approved for premenopausal women.

It's also imperative that you consume 1200 mg of calcium each day. Split it up because the body just can't absorb more than 500-600 mg at a time. Also have your Vitamin D levels checked if you haven't already. This plays a huge part in bone health. We're finding out more and more about the importance of Vit D every day. If your levels are around 35 or so, you'd just need to be sure to get 800-1000 IU each day. If your levels are low, your doctor will most likely prescribe a loading dose (50,000 IU) to get you to where you need to be.

I'd also go on the National Osteoporosis Foundation's website (www.nof.org ) and order the booklet "Boning Up on Osteoporosis." It costs $6.50 and is a wonderful reference book. We use it as a teaching tool in our rehab classes. Pay particular attention to the illustrations of correct and incorrect body movements for people with low bone density. Especially since you have children at home.

As for the answer to your question as to why the recommendation is for women 55-65, it has to do with the loss of estrogen. It's assumed that women this age are postmenopausal and thereby, have the greatest risk for bone loss. Also, if a woman is not postmenopausal, it may be difficult to get her insurance company to pay for the test.

Thanks again for response and all of the related information. I have the report in my hands and I am still mystified by the idea of a null-diagnosis for me as the report stated: "The bone mineral density classification is OSTEOPOROSIS." My physician made the statement, "You are Osteoporotic..." So what is wrong with me (and several female members of my family) if we are/were all having these bone issues before menopause? For sure when we are 55, we all look more like we have the back of a 75 or 80 year old and that is when the guideline is telling us to start to look for Osteoporosis. For us 55 is just too late! What are the differences in these T and Z scores? My left hip [Femoral Neck> reading was:
Bone Mineral Density: 0.533g/cm2
T-score: -2.8
Z-score: -2.5
WHO Classification: Osteoporosis


Thanks also for recommended treatment, I am going to follow-up with a holistic DO to see what she is going to suggest as well. I am real wary of taking drugs and/or supplements (or getting too aggressive too fast) with this for fear of risk of stroke, cancer, bone shearing, tooth loss, and kidney stones, as I''m assuming any treatment I start now at 41 is going to be for the rest of my life. (Grandma died of a stroke from the hormones they gave her to treat her Osteoporosis. She weighed 80 lbs, never drank smoked or ate a high fat diet). Perhaps there are some dietary work-a rounds with soy as well as some Calcium/Vitamin D power foods that I can consume on a regular basis to minimize heavy doses of drugs and/or supplements. That is my new focus for being proactive on early detection and treatment. Thanks again for the generosity of your time and interest!
Kind Regards,
BlueAge

Your bone density is not going to improve without medication. Unfortunately for you since you want to avoid it, your scores are just too low for improvement into a range that lessens your risk.

Your Z-score is comparing you to women of your age. What the Z-score is saying is that for your age, your bone density is very low. If you were postmenopausal with these scores, you would be osteoporotic, The key is menopause.

You need to be extremely proactive now. The soy mimics estrogen. I went to the National Osteoporosis Foundation Annual Symposium last year and a Pharm D spoke of soy as treatment. The results of many studies showed significant improvement in bone density while consuming soy, but only for 2 years. After that, there was no change. Also soy can interfere with some medications. I'd be careful about relying solely on it.

Your risk of fracture and a lifetime of less than independent living is much greater than the risk of any side effect of a medication. There are no risk free treatments. You have to look at your scores, your risk for fractures and your family history and weigh that against the very small number of people who've had tooth loss, bone shearing, kidney stones, etc.

There are no calcium/Vitamin D power foods that will improve your bone health like you want. The body is limited to the amount of calcium it can absorb and it is very difficult to get what you need on a daily basis thru diet. You'd have to time your consumption, kind of like trying to get pregnant at the right time. Vitamin D is not in enough foods for you to depend on it for what you need.

Because your bone loss will intensify as your estrogen level drops and it's already at a low point, if I were you, I wouldn't waste any time and allow further bone loss by trying to go the way you want. There's nothing wrong with taking a medication and it doesn't make you a better/smarter/healthier person to avoid it when it's needed.

I know you have fears, but you're fortunate to have this information now. Get the booklet. Read it and talk to your doctor. Once you fracture, there's no do-over.

I wish you the best of luck with your bone health.

One of the most common causes of low bone density in premenopausal women is low peak bone mass. Having lower peak bone mass increases your chance of getting osteoporosis. This is because women with low peak bone mass have low bone density. All women lose bone density after menopause and later in life. For women who start with lower peak bone mass, this age-related bone loss is more likely to lead to osteoporosis.

When premenopausal women are diagnosed with osteoporosis, it may be due to an underlying medical condition or a medicine that causes bone loss. Osteoporosis that is caused by a medical condition or a medicine is called secondary osteoporosis. If a premenopausal woman has osteoporosis, it is important to determine if this is the case. A list of many of these conditions and medicines is located at http://www.nof.org/prevention/risk.htm .

Diagnosing osteoporosis in premenopausal women is not straightforward and can be quite complicated. A diagnosis of osteoporosis in premenopausal women cannot be made based on just one bone density test alone. Many women have low bone density before menopause; that is not necessarily osteoporosis. A diagnosis of osteoporosis means that a woman is losing bone over time. Two BMD tests at least one year apart can help to determine if a person is actively losing bone or just has low bone density to begin with. A diagnosis of osteoporosis may also require looking at a person's medical history as well as other tests. These may include x-rays, lab tests and a physical exam.

To answer your questions about why BMD tests are not routinely recommended for young women, here are some reasons:

"022 Most premenopausal women with low bone density do not have an increased risk of breaking a bone in the near future. Therefore, having information about their bone density may only cause unnecessary worry and expense.

"022 Some premenopausal women have low bone density because their genes (family history) caused them to have low peak bone mass. Nothing can or should be done to change this.

"022 DXA tests can underestimate bone density in women who are small and thin. Therefore, a DXA test may indicate that a small person has low bone density, but the bone density is actually normal for the person's body size

"022 Osteoporosis medicines are not approved or advised for most premenopausal women, except when secondary osteoporosis is caused by glucocorticoid (steroid) use. BMD tests are used to help guide decisions about treatment.

Most of the osteoporosis medicines available at this time are not approved by the FDA for use in premenopausal women. But, as noted above, women who have taken steroid medicines for a long time and have osteoporosis, three osteoporosis medicines are approved for the prevention and treatment of glucocorticoid-induced osteoporosis.

In very rare cases, a healthcare provider may recommend that a premenopausal woman consider taking an osteoporosis medicine for other reasons. Examples include when a woman breaks a bone because of low bone density or has severe bone loss due to a medical condition.

Make sure you are getting the recommended amounts of calcium and vitamin D every day. It's also important to eat plenty of fruits and vegetables, exercise regularly and avoid having too much sodium (salt). Don't smoke or drink too much alcohol. These lifestyle habits can help you protect your bones. Talk to your doctor each year about what steps you can take to monitor your bone health and prevent fractures (broken bones).

Thanks for the interest of your reply Dr. Gold. Just a FYI, I don't take any drugs nor do I have a history of taking any drugs, steroids or otherwise. I have enjoyed 41 years free of any of the diseases mentioned in the link you've included in your prior response. Perhaps I just fit in the category of low bone peak mass because many of the women in my family weigh under 100 pounds and we are all of small frames. On the other side, by 55 most of us look like we are 75 or 80 with the typical ugly 'hunch' of the back. As far as prevention, I feel good about the diet and exercise part on my end. I do not smoke, drink or take in any more caffeine than a couple cups of decaf coffee a week. (I'm not even a candy or chocolate hound!) If you know of a specialist in the Metro-Detroit area, I should see please pass along the name it would be greatly appreciated.
Kind Regards,
BlueAge

If only we knew all factors which contribute to our risk of this disease...! I can remember talking with a patient who said that her mother had experienced spinal fractures and, as a result, she herself had done everything right: calcium and vitamin D, weight-bearing exercise, whatever. When it came to her first bone density test, she had low bone mass; when it came to the second one, she had osteoporosis. She was angry because she had done everything right and STILL had problems. And all I could think was, "Imagine how severe the disease would be without those efforts on your part!"

The historical low weight in your family certainly may play a part in this. We will know more about you when you have a second bone mineral density test which should either tell us that you just have low bone mass or you are still losing.

Regardless, stick to the high road. There has been a great deal written about the impact of caffeine on bone health, but I don't think we have enough evidence to suggest to people that they should drink no coffee, no soda, no chocolate shakes!

The NOF offers something called the Professional Partners Network. In it, we list certain specialists by state. You should certainly consult that site at http://www.nof.org/ppndirectory/index.asp. You also might consider looking elsewhere on the NOF website (for example, at the Board of Trustees http://www.nof.org/aboutnof/gov_boards.htm) for other names. There are many excellent specialists who devote their careers to fighting this disease and who could be of major help to you.

Best wishes. Please let me know if there are other ways I can help.