Treating Osteoporosis: What works for you?

On the effect of body size on DEXA: (caveat, if DEXA shows severe osteoporosis and you are small, you still have concerning osteoporosis and fracture risk)

Source: https://www.inspire.com/windblown/journal/forteo-results/reply/1478797/......... from a poster called "endodoc" who is a physician, presumably an endocrinologist:

"Most patients and most otherwise good physicians who never specifically
studied bone metabolism are unaware of the fact that DXA machines do not actually measure BMD. I realize that sounds bizarre, but it is true. If you look at the units for your BMD values on DXA, they are grams per square centimeter (g/cm2). There is no universe where mass/area equals density. D=M/V, in other words, density equals mass over volume. The DXA measures your BMC (bone mineral content), based on the level of x-rays that reach the detector. More mineral in the path of the beam, less x-rays make it to the detector = higher BMC. Less mineral in the path of the beam, more x-rays make it to the detector = lower BMC.

If DXA machines divided the BMC they actually measure by the volume of the bone scanned, the units would be g/cm3, it would actually be measuring density, and we wouldn't be having this discussion. However, they divide the BMC by the area of the ROI (region of Interest) that the DXA and/or DXA tech puts over the image of your bone; hence, the units are g/cm2. If you've ever seen your hip scan, you will see a rectangle that represents the ROI for the femoral neck sub-region. You will see a smaller square box, either close to the rectangle or touching/partially within the rectangle - that's the ROI for the Ward's triangle sub-region.

The problem with DXA being an areal measurement as opposed to a true volumetric measurement is that, as a result, it systematically over-estimates BMD on individuals whose bones are larger than average (think: those 5'10" gals with the the big wrists who played rugby in college), and systematically under-estimates BMD in individuals whose bones are more petite than average (think: those 5'2" gals with the the small wrists and ankles who did ballet in college).

Because of the confound of bone size on DXA, many smallish women have t-scores of < -2.0 when they are at their peak BMD at age 25. So if their T-score is -2.5 at the time they enter the menopause, it's likely (absent other risk factors, like bone toxic drugs or diseases) to represent an approximation of their peak bone mass. Most non-expert physicians, however, make the idiotic assumption that "everyone starts at average" (trust me, half are above and half are below, and with DXA it's only the big-boned folks who are above), so they interpret your baseline T-score of -2.5 at age 50 as if you've already lost 2.5 SD [standard deviations] of your bone mass. This is absurd."

ps this also explains why the heavier strontium makes DEXA look better than it is. Also please don't use this info as a reason to avoid meds if meds are needed!

thank you so much for taking the time to reply. I will check out Together.

I had a 20% gain in my spine, going from -3.3 to -2.5, which is now borderline. I had a9% increase in hip which is more than expected.

I am sensitive to meds so started Tymlos at a low dose and ramped up so my body could get used to it. The pen has "clicks" that adjust the dose. I did 6-7 clicks most of the time and the full dose is 8. I still did very well.

The company, Radius, has a patient assistance program. There is a fairly generous income requirement. You can call Together with Tymlos for advice.

hello, my name is Nancy and my osteopenia went to osteoperosis in lower spine and hips and although I did not have a scan of my neck, I suspect issues there as well. My endocrinologist is working with me to find a drug plan I can afford and doesn't affect my heart and we have currently landed on Tymlos and I am waiting to change to an insurance company that covers some of the cost. Still, it will end up costing about $3k per year which is a lot and will mean sacrificing travel for the next few years. Is there anyone who has taken this drug with success? I don't mind the sacrifice if there's a real improvement. Thanks you for any advice you might have on this drug.

Thank you for sharing this great info.
Does anyone know if the Dex machines at the Jacksonville Mayo have this capability??

TBS is trabecular bone score. The only way to get this info is to have a DEXA on a scanner with TBS capabilities. Most scanners do not have TBS software installed and therefore
most DEXA reports do not provide this info. Additionally, most endocrinologists never mention the benefits of getting a DEXA w/ TBS to patients. Trabecular bone is the web-like or sponge-like bone inside your bones and TBS is a better indication of bone health/strength than t-scores. Vertebra are more likely to fracture (collapse) if TBS is low.

What are you doing to improve your balance? And if you don’t mind sharing, what is your age?

I’m 54 and I was diagnosed w/ osteoporosis at age 50. On my 1st DEXA, my total lumbar t-score was -3.9. I don’t have any fractures and my balance is excellent. Over the last 1.5 yrs, I’ve incorporated balance specific exercises to keep my balance up as I age and to potentially increase it.

My 81 y.o. mother was experiencing balance issues and earlier this year she went to physical therapy for her balance and it really helped. If you don’t want to do physical therapy, look up balance exercises for people with osteoporosis.

Also, I can’t find a link to the specific study that I read this in, but about a year ago, I found a study that said that women doing HRT who supplemented magnesium were able to increase their TBS. If you don’t currently take a magnesium supplement you may consider adding it. Start slow. Too much magnesium will over stimulate your bowels—sometimes it just takes a little experimenting with which type of magnesium your body can tolerate best.

Here are some links to info on magnesium. The interesting thing is that labs (blood work) are not necessarily accurate regarding magnesium in the body—even if the numbers come back w/i range, one can still be deficient.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8313472/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5926493/

TBS is trabecular bone score. The only way to get this info is to have a DEXA on a scanner with TBS capabilities. Most scanners do not have TBS software installed and therefore
most DEXA reports do not provide this info. Additionally, most endocrinologists never mention the benefits of getting a DEXA w/ TBS to patients. Trabecular bone is the web-like or sponge-like bone inside your bones and TBS is a better indication of bone health/strength than t-scores. Vertebra are more likely to fracture (collapse) if TBS is low.

What are you doing to improve your balance? And if you don’t mind sharing, what is your age?

I’m 54 and I was diagnosed w/ osteoporosis at age 50. On my 1st DEXA, my total lumbar t-score was -3.9. I don’t have any fractures and my balance is excellent. Over the last 1.5 yrs, I’ve incorporated balance specific exercises to keep my balance up as I age and to potentially increase it.

My 81 y.o. mother was experiencing balance issues and earlier this year she went to physical therapy for her balance and it really helped. If you don’t want to do physical therapy, look up balance exercises for people with osteoporosis.

Also, I can’t find a link to the specific study that I read this in, but about a year ago, I found a study that said that women doing HRT who supplemented magnesium were able to increase their TBS. If you don’t currently take a magnesium supplement you may consider adding it. Start slow. Too much magnesium will over stimulate your bowels—sometimes it just takes a little experimenting with which type of magnesium your body can tolerate best.

Here are some links to info on magnesium. The interesting thing is that labs (blood work) are not necessarily accurate regarding magnesium in the body—even if the numbers come back w/i range, one can still be deficient.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8313472/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5926493/

What is TBS? My balance is dreadful. I have severe osteoporosis.