Does anyone have any experience of having a trabecular bone scan please? My understanding is that these give a better indication of bone strength than a DEXA especially in petite women. There was a study some time ago showing that Chinese and Japanese women who tend to be small boned and have low DEXA scores tend not to fracture despite having a low DEXA score.
Secondly I am in San Francisco at the moment visiting family and wondered if anyone could recommend where in SF to go for a trabecular scan?
Thank you
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Mistydawn
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Mistydawn, I do not have experience with a trabecular scan; however, I too am small--4'11" (no height loss) My 2019 DEXA scan showed that my lumbar spine t-score was -3.9 and although my hips weren't quite as low, the DEXA still osteoporosis.
Unfortunately, I have doctors that don't seem to have a clue. My GP and endocrinologist recommended osteo-meds even though I told them I was interested in learning about possible natural ways to increase my bone density. My endo went as far as to call my bones "horrible" and basically scared me into meds. I didn't know what else to do so I took alendronate for 1.5 yrs, which caused digestive tract issues. I quit taking the alendronate in July 2021 and, at my endocrinologist's advice, I had my 1st zoledronic acid infusion in November 2021.
After I got the infusion, I started doing more research on-line about osteoporosis. That's when I found this website and when I posted my bone density and my height (4'11"), I immediately got a reply from someone who said that DEXA scans can be skewed for smaller ppl. Dr. Brown (betterbones.com), Dr. Lani Simpson, and Dr. Susan Ott, all seem to agree that DEXAs are skewed for smaller people.
Eventually someone on this website told me about Dr. Ott's BMAD calculator courses.washington.edu/bone... You should definitely check this out. You will need the ancillary data from your DEXA scans. I had a very difficult time getting my ancillary data from the facility that did my scan but I finally got it. When I entered my data in the BMAD calculator my numbers improved significantly, my spine and right femoral neck show osteopenia NOT osteoporosis.
Hope this is helpful. If you have a link to the study you referenced in your post, I would love to have it. Thanks.
Thank you very much FearFracture for responding. I am so very sorry to learn of your experience. I was diagnosed with osteoporosis of my lumber spine DEXA -3.5 and osteopenia in the hips in 2015. I did my research and declined the Alendronic Acid that was being offered to me plus any other meds. Thankfully my last DEXA scan last year (2021) showed only marginal deterioration from the scores in 2015. I have to date, fingers crossed, not broken any bones and do sometimes worry whether I am doing the right thing by declining the meds. I am petite too. Thank you for the link, I will take a look.
I will see if I can find the link to the original study again as I did a lot of research early on in my diagnosis. I'll send it to you if I find it.
"Marginal deterioration" sounds like good news! Why did you wait 5 years for another bone scan? Also have you considered an REM scan? I think that is available to ppl in the UK.
I was already seeing my endocrinologist for hypothyroidism so I didn't push when he said meds were the only option to treat my "osteoporosis". When he prescribed the zoledronic acid in 2021, he actually told me that he would NOT prescribe it to someone with osteopenia, but because he ignored my height in relation to my DEXA numbers, he did! My current plan is to not have another infusion. So far, I haven't had any horrible side effects from the zoledronic acid but now that I have been researching the issue, I have found that there are legitimate ways to reverse bone loss without meds and that is what I want to try to do.
Since your 1st DEXA in 2015, have you made any changes to your diet or exercise regime to try to reverse your bone loss? I've made a good number of changes including eating 6 prunes a day and a serving of almonds at least 5 days a week, increasing my daily protein intake, and taking vitamin K2 MK7, additionally, I've joined a gym and have been going 3 times a week (every other day).
If you get your ancillary data and enter it in the BMAD calculator, please share if your numbers improve.
Thank you! I decided against the meds due to horrendous long term side effects including osteonecrosis of the jaw but more importantly due to the increase in fragility fractures post treatment!
I have a DEXA scan every two years and was pleasantly surprised my values had deteriorated markedly. I have been a vegetarian since birth but I gave up gluten, dairy milk, refined sugars. I set up a blog on Indian Vegetarian Cooking -see ushasveryown.com.
Not considered an REM scan- thank you will look into it. Also, will keep you posted re: BMAD.
Yes, I too was/am concerned about the long-term side effects from bisphosphonates. Hopefully, given that I haven't been on them "that long" I won't experience the negative side effects. I know ppl who have used bisphosphonates for years with NO adverse side effects, but even when my endocrinologist prescribed the alendronate for me in 2020, he said I could only take it for 5 years, to avoid the potential for spontaneous femur fractures that can occur when bisphosphonates are taken for long periods of time. However, he did not mention ONJ to me, which REALLY bothers me. I only learned about ONJ when I went to the dentist in the Spring of 2021. There was a question on the new patient paperwork about osteoporosis, so I asked the dentist why the question was asked, and she told me about ONJ. I find it highly irresponsible that my endo never mentioned ONJ to me. He didn't even ask me when the last time was that I'd been to a dentist prior to putting me on bisphosphonates and from what I have read, every doctor should ask that and recommend a full dental exam, with xrays, prior to prescribing bisphosphonates.
Sadly the give you the most basic information plus a leaflet. I guess they are busy people but we have to live with the consequences! I found that I had to do my own research.
I know it has been a while since you originally posted but if you haven't yet found a place to get a DEXA w/ TBS check out this website medimapsgroup.com/find-cent... and they were pretty quick to reply once I found their website and submitted the form. Also, you may have noticed that many Europeans on this website talk about REM scans and that might be a better option than traditional a DEXA even one with TBS. Echolight is the manufacturer of REM scanners and the company opened a US headquarters about a year ago. There aren't many REM scanners in the US and the scan is not covered by insurance, but at the once imagining center that I considered going to to have an REM scan the cost of the scan was less than $100 and the other costs could be covered by insurance. I ultimately opted not to have an REM scan because the imagining center was out of state so in addition to the cost of the trip (5 hours away) I would have had to pay about $650 out of pocket. I'm hoping that in the next couple of years and imagining facility in my state gets an REM scanner. I emailed Echolight about a year ago and they sent me a list of facilities in the US with REM scanners. As of last February, there were REM scanners in NJ, NC, and MD, and imaging centers in TX and MO were supposed to be getting REM scanners in the near future.
BELOW is my experience with getting a DEXA w/ TBS.
Over the summer, I watched a webinar on bone turnover markers. If you are interested, you can go to my bio and there are several links, one of these links is a pdf that I got when I signed up for the webinar. It contains a lot of information regarding bone turnover markers.
During the webinar, one of the speakers, a doctor, brought up TBS (trabecular bone scan/score) being and important part of the diagnosistic process for smaller ppl. In August, I asked my endocrinologist to order a DEXA with TBS for me but when I asked him where I could get this done, he had no clue--seriously, if a doctor can't tell a patient with osteoporosis where they can get a TBS, can that doctor really claim he is capable of treating osteoporosis?
I sent an e-mail to the facility that did my previous DEXA to see if they had DEXA with TBS capabilities. As usual, sigh, I had to reach out to them multiple times and finally they let me know that they did not. After a couple of months of hunting, I finally found a facility 4 hours away that does have TBS capabilities and during the 1st week in December, I drove up to have the DEXA with TBS done. Note, I spent a great deal of time confirming with this facility that they could in fact do a DEXA w/ TBS prior to scheduling my appt and driving up.
On the day of my scan, I walked into the room and the technician said, "I know we told you we could do a DEXA with TBS but we might not be able to give you that data." Seems the entire medical-osteoporosis world is a haphazzard clown show. I did the scan anyway because they would need my scan/data to even try to attempt to figure out on the problem million dollar plus machine they imaging facility had purchased.
I got my DEXA numbers from that scan a day or two after the scan but my TBS was not included. Note, if you look at my bio and see a link to my DEXA results, those results are all from the GE LUNAR scanner from a different facility--I had a DEXA w/o TBS done at my normal imagining center because the only way to "compare" bone scans even remotely reliably is by having the scans done on the same scanner--this alone makes most of us question how accurate any of these scans are.
The scan I had done on the DEXA that was supposed to have TBS capabilities was done on a Hologic machine. Data from Hologic and GE Lunar machines can't be compared. I got my t-score results from this scan and because it was a Hologic machine and these scans showed that my bones were worse. I called the facility because as the technician had mentioned might be the case, there was no TBS. Finally, the last week in December, I received a letter from the facility that contained my TBS numbers.
Spine TBS L1 - L4 Normal microarchitecture > 1.31; Degraded < or = 1.23.
Given that my 1.287 is closer to 1.31 than 1.23 I took that as an awesome sign.
Now, here's where I question the report I received a bit. On page one of the report there is an image of my L1 - L4 called TBS Mapping and the colors are green (high TBS), yellow is in the middle, and orange (low TBS) so the image of my spine, or TBS Mapping, shows each vertebrae shaded in these colors to show what my trabecular bone looks like (hope that makes sense). Then on page two there is a spreadsheet chart that labeled "Detailed Spine Results" and it lists the TBS for each vertebrae.
L1 = 1.278 TBS
L2 = 1.323 TBS
L3 = 1.342 TBS
L4 = 1.205 TBS
L1 - L4 = 1.287 TBS
If you look at my TBS score for L2 and L3 both are in the normal range because they are both above 1.31. Additionally L1, which is 1.278 shows as partially degraded; however, according to the report that I received my L4 is 1.205 or degraded.
My gut feeling is that the TBS they listed for my L4 is wrong. Here's why: from everything I have read about DEXAs and bone density, generally speaking unless there is an identifiable reason, such as cancer or a hurt or broken bone, generally speaking t-scores are somewhat in alignment in certain areas of the body. So unless there is a cause/reason, it would be usual for someone to a LEFT hip t-score of -5. and a RIGHT hip t-score of -1, and you won't usually see people with extreme diffences between their total lumbar t-score and their hip t-scores. Additionally, the TBS Mapping image on the first page of the report, shows that my spine is slightly curved, this shows up a little in L3 and more in L4. In this mapping image they have rectangles on blocks around each vertebrae, and the L4 block is bigger than any of the other blocks because of the curve in my spine and because of this ther is a good about of blank space captured, which I believe may be skewing my L4 TBS. If you look up Lani Simpson, she talks a lot about how most ppl have no idea what they are doing when it comes to DEXA scans and some of the common mistakes made. For instance, when I told the technician who did my DEXA w/ TBS that there a difference of .5 in my t-scores between the two machines, she made a comment like, "A 1/2 pt is nothing." A .5 difference in a t-score is not a 1/2 point, it's half of one standard deviation, which, when it comes to bone density is HUGE.
Ultimately, other than the hassle, I would say that I glad that I chose to have the DEXA w/ TBS. I now feel much better about my overall bone health.
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My 2019 DEXA scan showed that my lumbar spine t-score was -3.9 and although my hips weren't quite as low, the DEXA still osteoporosis. 
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