What they never told me about dexascans

Posted by joegor @joegor, Jun 2 4:52pm

I had my first scan 4 years ago at the same facility where I was starting treatment for prostate cancer. My numbers were -2.4 and -2.5. Two years later a rheumatologist I was seeing for another issue ordered another scan. Not knowing any different I had it done at the facility closest to me. Although my T-scores were down slightly my BMD numbers were improved. When I asked the doctor about the seeming contradiction he shrugged and said you really can't compare tests done on different machines. Nice time to tell me.

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Profile picture for donnabutcher @donnabutcher

At least you got a scan and treatment if needed! Most men don’t. My husband’s oncologist (prostate)office has just started doing them for men going on hormone depravation meds. That is another factor that contributes to osteoporosis and is important to know.

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@donnabutcher I think our lifestyle over the last 60 odd years is going to result in a lot more men having osteoporosis. It's my understanding that soda is bad for the bones. Also PPI's like Prilosec. That being said it's doubtful men will ever be screened on a regular basis unless they're already being treated for something else.

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Profile picture for maine @maine

So we are being diagnosed by machines unable to produce consistent results?! What happens when the one facility you have been using updates to a new machine? Suddenly your results go haywire? Somebody in manufacturing needs to go back to the drawing board!!!!

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@maine Precisely this. What if you move? Change docs? It’s maddening.

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Profile picture for jozer @jozer

I asked my MD how important it truly was to be on same machine, same technician, etc. I said that people move, technicians quit, machines get replaced, etc. He said it is preferred, not required. My thought right now is to go to a facility near me that does DEXA with TBS (the one my doc sends me to doesn't know what TBS is). Of course it would be private pay; plus every one of them need a referral from a physician (which I have). Medicare doesn't cover every year just every two. Some of us have doctors that must get around that; mine (so far) does not. But I don't think our numbers would be dramatically different on different machines/technicians etc. I think numbers would be in the "range" for needing treatment regardless of what machine we are tested on.

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@jozer
I am on Medicare and my plan pays for a yearly DEXA scan; I wonder why yours does not?

Pam

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Profile picture for pam52 @pam52

@jozer
I am on Medicare and my plan pays for a yearly DEXA scan; I wonder why yours does not?

Pam

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@pam52 I don't know; will be asking about that at my appointment in July (where I am sure we will discuss scheduling my second Reclast infusion). I do need to contact Medicare; I know they only do every 2 years unless (I believe) you are being actively treated for osteo (which I am). Personally, for my mental health, I need to know what my BMD numbers are. Spent the entire year worrying and wondering about how the Reclast infusion is helping/not; (CTX numbers indicate it is working, according to the doc, but what are my T-scores?). If DEXA gold standard and we are being treated with powerful medication perhaps for years/forever I really need to know.

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Profile picture for jozer @jozer

@pam52 I don't know; will be asking about that at my appointment in July (where I am sure we will discuss scheduling my second Reclast infusion). I do need to contact Medicare; I know they only do every 2 years unless (I believe) you are being actively treated for osteo (which I am). Personally, for my mental health, I need to know what my BMD numbers are. Spent the entire year worrying and wondering about how the Reclast infusion is helping/not; (CTX numbers indicate it is working, according to the doc, but what are my T-scores?). If DEXA gold standard and we are being treated with powerful medication perhaps for years/forever I really need to know.

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@jozer Bones change slowly and DEXA results are not precise. A difference in DEXA from just one year to the next is likely to be less than the "least significant change" error margin of the machine.

3% to 6% of BMD change you see between DEXA scan can just be the precision variation. You can see this in slide #43. Note that this is % of the density measurement, not of a T-score.
https://cme.nof.org/sites/default/files/DXA%20Basics-%20Morgan_Jankowski.pdf
I would still rather have yearly DEXA measurements because even just averaged together then I would get a better idea what my situation really is. But seeing a 2% decrease, or 2% increase in your BMD between 12 months is apparently not something that we can take action on because it may be just DEXA error.

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Profile picture for jozer @jozer

@pam52 I don't know; will be asking about that at my appointment in July (where I am sure we will discuss scheduling my second Reclast infusion). I do need to contact Medicare; I know they only do every 2 years unless (I believe) you are being actively treated for osteo (which I am). Personally, for my mental health, I need to know what my BMD numbers are. Spent the entire year worrying and wondering about how the Reclast infusion is helping/not; (CTX numbers indicate it is working, according to the doc, but what are my T-scores?). If DEXA gold standard and we are being treated with powerful medication perhaps for years/forever I really need to know.

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@jozer I'm on Fosamax, which I assume is considered active treatment, and none of my doctors have indicated that Medicare covers a Dexa more frequently than every two years.

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Not sure how you can get one every year - other than private pay - had one in 4/2024, results sent me to an endo, did Fosamax for about a year; had another Dexa in 4/2025, Reclast infusion 7/2025 (took a couple months to work up the courage to get the infusion!), 4/2026 appointment and found out Dexa is every 2 years; so I will not know T scores until 2027. I may have been borderline between private employee health insurance (through hubby) and Medicare start. I would be very willing to pay for something (DEXA, REMS, whatever for my peace of mind) and my doc did give me a referral (necessary in my area) but my Dexa center can't give me a straight answer...$400 to $1200, depending on discounts, etc. I would like to go somewhere else but again, I would need a referral for medical DEXA. Very disheartening (especially after doing Reclast, which I was told was a great, powerful, improve your bone health dramatically drug) after anxiously waiting a year for what I thought would be my yearly DEXA. Oh well; doc says it isn't really necessary because the treatment protocol would not change, and very doubtful my T scores would improve so much that I would not need another infusion. Unfortunately, I was told that it was possible I would only need one infusion (possible, not probable) and I naively thought a DEXA would be required to show that. So another year of waiting and worrying. You'd think there would be a better way!

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There probably is a better way just like there probably is a cure for cancer.

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Profile picture for jozer @jozer

@pam52 I don't know; will be asking about that at my appointment in July (where I am sure we will discuss scheduling my second Reclast infusion). I do need to contact Medicare; I know they only do every 2 years unless (I believe) you are being actively treated for osteo (which I am). Personally, for my mental health, I need to know what my BMD numbers are. Spent the entire year worrying and wondering about how the Reclast infusion is helping/not; (CTX numbers indicate it is working, according to the doc, but what are my T-scores?). If DEXA gold standard and we are being treated with powerful medication perhaps for years/forever I really need to know.

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@jozer the difference could be original Medicare and Medicare Advantage plans.

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