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15% spinal bone loss in one year--any help appreciated
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EnviroPoli posted:
I'm a 48 yr old female. I've known I've had low bone density since 2004, when I was diagnosed with Celiac disease. I've been completely gluten free since the diagnosis and have exercised regularly. In 2009 I had another DEXA scan done because, for various reasons, I wasn't convinced that the Celiac disease was the only reason for being osteopenic. It showed additional bone loss, though not yet osteoporosis. Went to an endo and the testing she did showed I had hypercalciuria (I was peeing out my calcium), so I went on HCTZ to help the kidneys retain calicum in my body. After being on the HCTZ for one year I had another DEXA scan in Dec 2010--it showed I'd lost 5% bone density from the previous year and that I now had osteoporosis in my spine (-2.5). Upped the dose of HCTZ, added weight lifting to my exercise routine and started eating a little meat (was previously a 24 yr vegetarian). I just had another DEXA scan in Dec 2011 and it showed I'd lost an incredible 15%, in just one year, from my spine. I plan to go on an osteoporosis drug, but my endo is stumped as to why this has happened. I'm really afraid for what my future holds and plan to aggessively look for this new cause of my bone loss. I'll add that I've been diagnosed with spinal arthritis and fibro. I'd welcome an ideas on what to pursue and where to do that at, plus any other suggestions. Thank you.
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bonebabe responded:
It may very well be that you never reached your peak bone mass during your bone building years, and as you approach and enter through menopause, the density you did have is diminishing. It is not uncommon for women to lose up to 20% of bone mass in the 5 or so years going into and through menopause as the ovaries cease producing estrogen. That, combined with your lack of proper calcium absorption, could certainly do this.

Also, because bone is very slow to respond to any treatment (although HCTZ is not considered treatment) testing is usually done every two years so that an accurate portrait of your bone health can be determined. The fact that you've had DXA's only a year apart and are having this loss is indeed alarming.

I'm assuming you had the test done at the same place? Is the tech doing the test ISCD certified? I would find that out before I went any further. If not, I'd look on the ISCD website (ww.iscd.org) for a certified tech/center near you and cough up the cash for a reliable test. A slight variance in positioning can make a world of difference in a result. A certified tech follows standard protocols. Did the tech scan your forearm as well as the hip and spine? If you have spinal arthritis, it can artificially elevate your spine scores and a forearm might need to be done as well since it has the same type bone as the spine. It would not, however, be repeated in future scans.

Also, if your endo has not checked your Vitamin D levels, that should be done. You could very well be low and that would play a huge part in your bone density.

Unfortunately for you, you have now passed the point where you can do anything "naturally." Your endo is correct to put you on an osteo drug. Make sure you're taking calcium with the drug and that you space it out during the day. The body can only absorb 500-600 mg at a time, so you certainly want to get your maximum amount.

You want to be extremely careful in your exercising that you don't bend forward from the waist or twist side to side. Those movements put pressure on the vertebrae and cause compression fractures with repetitive movements.

Go to the National Osteoporosis Foundation's website (www.nof.org ) and order their booklet "Boning Up on Osteoporosis." We use it as a teaching tool in our center's osteo rehab classes. It's an excellent resource. The website also has a great FAQ section in addition to tons of reliable documented information.

Good luck to you. You're young to deal with this and I hope you many fracture free years ahead.
 
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EnviroPoli replied to bonebabe's response:
I appreciate the information Bonebabe. My forearm was measured and it hasn't changed much from 2010 (-1.3 then & now) I plan to go to the ISCD website to see if the facility is certified. Also, I have had my Vit D checked and it is normal (35.4). I've been to the NOF website. They have a lot of good information. I will order the booklet you suggested.

Thanks again for the information.
 
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bonebabe replied to EnviroPoli's response:
You're welcome. Also just an FYI for future reference. The forearm isn't routinely rescanned because it doesn't respond to change the way the hip and spine do - so don't take a stable forearm reading as an indication that the rest of your body is also stable.

Glad you're getting the booklet. It's great.
 
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EnviroPoli replied to bonebabe's response:
Had an appointment with my endo a week ago. She now thinks the 15% bone loss in 1 yr. is the "high" side of normal, wants me to go on Forteo (I will begin it in about 2 weeks once insurance issues get resolved) & doesn't think I need to look for any other cause for the bone loss. She thinks that since I went through menopause 7 months ago that this is the cause of all the loss. Saw my rheum. yesterday and he thinks the same thing, with perhaps a bit of the loss caused by the immflamation of the spondylitis. If this is indeed the case, I feel I've been greatly let down by my doctors. At no point did anyone warn me that I could have such rapid bone loss--if they had, I would have gone onto an osteo drug sooner. In fact, for years I've been told that bone density doesn't change much from one year to the next.

I'm starting to think that doctors don't take bone loss in "younger" women seriously. Perhaps they (and medical researchers) don't really understand how bone loss occurs nor the rate at which it can happen when bone loss isn't age-related.

You mentioned in a previous reply that a perimenopausal woman can lose 20% of their bone density in the years leading up to menopause. I've never heard of such a high rate. From where did you obtain that information?
 
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bonebabe replied to EnviroPoli's response:
I've worked in an internationally accredited osteoporosis Center for 16 years. We are one of 40 such sites in the US. When we were first accredited, we were one of 14 internationally. Our information comes from the ISCD and the NOF - the leaders in the field of anything osteoporosis.

The possible 20% bone loss during the perimenopause years can be attributed to the lack of younger women reaching their peak bone mass. With the focus on being slender, being cool by smoking and the lack of outdoor exercise and Vit D, younger women are just not building up their bone mass. When they reach perimenopause (when the ovaries slow down their production of estrogen) the amount of bone density that they've built up begins to decline. If not much was there to start with, it doesn't take long for a younger woman to get into trouble, especially if she elects for whatever reasons not to use hormone replacement.

Also if they've had a history of missed periods during their childbearing years, that too will negatively impact the building of bone mass. It's so important that we educate our daughters and grandaughters about the importance of good bone health. Cut out the sodas, drink milk (or take a calcium supplement) and play outside in the sunshine!

You don't say how much you weigh or how tall you are, but I'm willing to bet you're thin, always paid attention to what you ate and not to building bone mass.

The Forteo is a good drug. It's the only one that builds new bone. Still wish you'd had some more testing, but it's highly likely your present situation was caused by a lack of peak bone mass.
 
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EnviroPoli replied to bonebabe's response:
The issues you discussed on building bone mass (or not) are certainly an issue for younger women. I've noticed with dismay the poor eating and exercise habits of younger woman I know(under 35) and the worse habits of teenagers today. But those don't apply to me in this instance.

If I didn't reach peak bone mass, it wasn't because of my personal eating or exercise habits. I'm 5'3", 116-119 lbs and have been throughout my entire adulthood. I've always had a good diet, even in childhood. Soda and junk food weren't a part of diet except as occasional treats and that continued into my adult life. Dairy products were a central part of my diet until 5 years ago, when I realized how much intestinal distress they were causing me, so at that time I greatly decreased the amount of them I ate, but also greatly upped the amount of the calcium/vit D supplement I was taking. I have also been active all my life--walking, hiking, rollerblading, gardening, biking. I lifted weights sporatically throughout my twenties, but started on a regular lifing program at age 30, which I continued until age 42.

Has your osteoporosis center looked in inflammation as a major cause of bone density? In the last few weeks, as I've tried to pinpoint other bone loss causes, I've been looking further into whether inflammation from my spondylitis could account for this rapid loss. Many things I've read about inflammation make passing reference to its ability to "thin" bones. Just this week I was in an email exchange with someone from the Spondylitis Assoc. of America regarding this issue. They sent me a link to a 2004 article written by a Canadian rheumatologist discussing how on-going severe inflammation, whether, let's say, from inflammatory bowel disease, ankylosing spondylitis or some other inflammatory condition can lead to osteoporosis because inflammation causes the release of certain chemicals into the blood that activate osteoclasts. He notes that inflammation isn't taken that seriously for its bone thinning potential. Is that true today? Does your center look at long-term inflammation when evaluating people for osteoporosis and its causes?

In my case, I'm beginning to think that this might be the reason for such rapid & severe bone loss. I was diagnosed with spondylitis less than one year ago and currently not taking any medication for it. This will change in March, when I will be put on one of the biologic drugs (have to wait until I've taken the Forteo for at least 1.5 mos to note how my body reacts to it).

I'd be interested to know what you all know about the severe inflammation/osteoporosis link. Thanks for your time.
 
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bonebabe replied to EnviroPoli's response:
We have not looked into that specific issue. We do know that inflammatory illnesses, such as Crohns or IBS, etc, do interfere with absorption of calcium and also the meds that are taken for the illness certainly affect the bones. The study of osteoporosis and all the issues relative to it is still very new. It is constantly evolving and being evaluated. We work with what we know.

I wish you success in your quest to better your bone and general health.


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