For those with mild osteopenia but multiple fragility fractures

Posted by juanitalinda @juanitalinda, Jun 22 12:01pm

My dexascans show mild osteopenia ... -lumbar spine -2.1, total hip -2.0 and femoral neck at -2.2.

I am 69 but seem to have lost the genetic lottery. Even though I have lifted weights for over 40 years and walk over 30 miles a week, have taken HRT and calcium/vit D supplements forever, I have had 3 spontaneous fractures this past year.

Communited femur fracture (bent over to pet large dog), broken rib (in my sleep), and compressed L2 (coughed while putting on deodorant.)

My bone specialist said the DEXA scans 'clearly show a false negative' as regards to osteoporosis, but the CT scans also showed 'diffuse osteopenia', not osteoporosis.

The bone specialist started me on Evenity last month and told me to stay active but be careful. I think his quote was 'it's hard to know how much bubble wrap you need'. My PT has prescribed bone-strengthening exercises, but we are being really cautious for now.

At this point, my life is pretty restricted. I walk, do aqua therapy, a gazillion PT exercises, but I know it is temporary.

My question to you is .... 'if the dexascan and CT scans don't accurately reflect my bone strength', how will I know if I have enough bone strength to be more aggressive with my exercises?'

My doctor said an improved Dexascan would show I don't have osteoporosis ... but can I believe that? The current bone scan doesn't show it either. And I don't get another scan until next year.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Have you been tested for secondary cause ?

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@gently

Have you been tested for secondary cause ?

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I had a ton of blood tests (5 vials worth) and 24 hour urine test to eliminate most causes.

My mother and grandmother also suffered from many fractures and height loss, so I figure there is a strong genetic component.
The only insight the dr shared was that the bone density was good, but the structure itself was not strong.

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Structure is an issue that can be caused by Graves disease. Are there any diseases discomforts shared by your mother and grandmother. You may have already been tested for "everything." The number of vials is impressive. You might look at exactly what you have been tested for and what might have been overlooked. I'm not sure "most" is adequate.
Forteo is especially good at rebuilding structure and falls below other meds that increase BMD.

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Your bone density is not osteoporotic, but there is an issue with your bone quality, clearly.

I don't honestly understand why a doctor would tell you that a DEXA will reassure you. Can you have a TBS (trabecular bone score) with your next DEXA? That measures bone quality. Another issue McCormick discusses is the connections of the struts within bones, which can become disconnected and cause weakness.

Your parathyroid is okay? Have you done any steroids?

I am so sorry. I have fractures and know how hard it can be. Both Forteo and Tymlos are good at healing fractures but Evenity may be a good choice too, especially since it acts fast.

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@windyshores

Your bone density is not osteoporotic, but there is an issue with your bone quality, clearly.

I don't honestly understand why a doctor would tell you that a DEXA will reassure you. Can you have a TBS (trabecular bone score) with your next DEXA? That measures bone quality. Another issue McCormick discusses is the connections of the struts within bones, which can become disconnected and cause weakness.

Your parathyroid is okay? Have you done any steroids?

I am so sorry. I have fractures and know how hard it can be. Both Forteo and Tymlos are good at healing fractures but Evenity may be a good choice too, especially since it acts fast.

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He ran a bunch of thyroid tests which came up normal and, except for the broken bones, I have been healthy. Never taken steroids .... or smoked.

Yes, he recommended Evenity because it acts fast. At the rate I was going, I was breaking a bone every 3 months , without even falling or bumping into anything.

Next Dexa, I will make sure talk to them about the TBS. I probably need to check if our hospital has the capability to run those numbers. If not, I will need to find a place that does.

I sure hope this Evenity works .... my dog misses her walks.

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@juanitalinda

He ran a bunch of thyroid tests which came up normal and, except for the broken bones, I have been healthy. Never taken steroids .... or smoked.

Yes, he recommended Evenity because it acts fast. At the rate I was going, I was breaking a bone every 3 months , without even falling or bumping into anything.

Next Dexa, I will make sure talk to them about the TBS. I probably need to check if our hospital has the capability to run those numbers. If not, I will need to find a place that does.

I sure hope this Evenity works .... my dog misses her walks.

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@jaunitalinda I have 7 spinal fractures and know how you feel 🙂 Once you fracture with no or low impact, even McCormick, the chiropractor expert on osteoporosis who urges testing bone quality, said there may be no point in testing with TBS since it is already clear bone quality is poor enough to cause fractures.

I live like you with extreme care every day, to avoid further fractures. I am going to finally do the masterclass offered by Margaret Martin now that I have finished with Tymlos and Evenity, but don't expect to ever return to just moving the way I want to. I walk a lot though! Don't let that dog pull on you to go get a squirrel 🙂 Hope Evenity helps you. So sorry and wanted to say I get it!

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@windyshores

@jaunitalinda I have 7 spinal fractures and know how you feel 🙂 Once you fracture with no or low impact, even McCormick, the chiropractor expert on osteoporosis who urges testing bone quality, said there may be no point in testing with TBS since it is already clear bone quality is poor enough to cause fractures.

I live like you with extreme care every day, to avoid further fractures. I am going to finally do the masterclass offered by Margaret Martin now that I have finished with Tymlos and Evenity, but don't expect to ever return to just moving the way I want to. I walk a lot though! Don't let that dog pull on you to go get a squirrel 🙂 Hope Evenity helps you. So sorry and wanted to say I get it!

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@windyshores

Thanks for the understanding and advice. I can't even imagine 7 spinal fractures. Has that translated into a massive loss of height?

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@juanitalinda

@windyshores

Thanks for the understanding and advice. I can't even imagine 7 spinal fractures. Has that translated into a massive loss of height?

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@juanitalinda um, yes, my kids have taken to calling me "cute." Never a good sign!

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@juanitalinda

He ran a bunch of thyroid tests which came up normal and, except for the broken bones, I have been healthy. Never taken steroids .... or smoked.

Yes, he recommended Evenity because it acts fast. At the rate I was going, I was breaking a bone every 3 months , without even falling or bumping into anything.

Next Dexa, I will make sure talk to them about the TBS. I probably need to check if our hospital has the capability to run those numbers. If not, I will need to find a place that does.

I sure hope this Evenity works .... my dog misses her walks.

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https://www.medimapsgroup.com/download/
I found this site that shows where you can find facilities that have TBS. They also responded to my email questions. They will also lobby your local imaging facility to tell them about TBS (which I did just to help promote awareness... there are
none close by to me). Hope this helps.

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@dianeelizabeth

https://www.medimapsgroup.com/download/
I found this site that shows where you can find facilities that have TBS. They also responded to my email questions. They will also lobby your local imaging facility to tell them about TBS (which I did just to help promote awareness... there are
none close by to me). Hope this helps.

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@dianeelizabeth

Thank you so much for the link.

Luckily, my bone doctor's facility has the TBS equipment. I will make sure he requests the TBS when I do my next scan.

I usually have my Dexa done at a local hospital but will gladly drive the extra miles if it will provide more complete information.

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