Osteoporosis: What tests confirm diagnosis and treatment options?

Posted by leeosteo @leeosteo, Jan 12, 2023

I was diagnosed with Osteopenia in 2014 which progressed to Osteoporosis in my spine in 2016 (as result of DEXA tests). I was on Alendronate for almost 5 yrs and have been on a medication holiday since 2019. My 2022 DEXA now shows progression to Osteoporosis in spine and hip. I'm meeting with my PCP next week to discuss next steps. Net, I'm really worried with disease progression and frightened with going back on Osteoporosis meds. I've read that Osteoporosis should not be diagnosed only on DEXA. What has been your experience? Are there other tests that should be considered? Are you using a PCP or other type doctor to walk you through your options?

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

Hi! I would highly recommend looking into Dr. Susan Brown's Better Bones, Better Body Program. This is an online or sometimes in-person program in which you learn how to build bone strength naturally. I took the course ($350) and was able to improve my lumbar spine bone density t-score from -2.5 to -1.9 in 11 months of working the program. It's been worth every penny. As follow-up to the course, Dr. Brown and her staff offer ongoing support and guidance for all aspects of improving your bone health: diet, exercise, nutritional supplementation, stress reduction, etc.
The most advanced osteoporosis/bone quality testing out there that I know of is: newer DEXA scans which are used in combination with TBS (Trabecular Bone Score) technology and the Echolight REMS ultrasound technology. DEXA plus TBS is just beginning to show up in clinics in the US. Echolight REMS is primarily in Europe, but there is one clinic in North Carolina that offers Echolight scans (Central Carolina Orthopaedic Associates, CCOA). These two new ways of assessing Osteoporosis are game changers for those of us with bone health issues! The reason for this is that our DEXA scan scores are NOT reliable predictors of fracture risk. Fracture risk can only be determined by looking at both bone density and bone strength. The equation is: bone density + bone strength = bone quality. I know this, because I fractured my knee so badly as a result of a really low impact trauma accident, and yet I needed a total knee replacement. The radiologist told me I HAD to do something about my bones. All this and I only have osteopenia!

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Hi again,
In Dr. Brown's Better Bones Program, she covers blood test that help to assess the condition of your bone metabolism in the first section of her course titled, "Assessment of Bone Strength". My PCP ordered some of them and my endocrinologist ordered the rest. Good luck and try not to be afraid.
I highly encourage all women who have been told they need to go on bone meds, to take a breath and instead, take Dr. Susan Brown's Better Bones class FIRST. If you have no success after a year or two, then perhaps go the meds route. Dr. Brown's course is geared for those of us who have been scared by our diagnosis of Osteoporosis (or Osteopenia) and scared equally by the treatment options and the potential side effects of taking bone medication.
I've taken the Better Bones course, worked the Program for over a year, and improved my lumbar spine density in a statistically significant way: from a
t-score of -2.5 in 2020, to a t-score of -1.9 in 2022 (this is after 11 months working the Better Bones Program to the best of my ability (not perfectly)!
Dr. Brown is a medical anthropologist who has studied bone health for decades. I trust her knowledge and her heart for those of us who have fragile bones.

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@somde

My test for osteoarthritis in my hip and knee was diagnosed by x-rays. I wonder after reading your comments if I need any further testing. As certain types of cannabis oils are legal in Canada now, for the pain I am now taking low dose of CBD and TCH oil 0.03 ml Amazed at the pain relief. I wanted to make sure it was the oil was helping so I stopped for a few days and pain started to come back. It is amazing how much pain relief I have now. I almost feel normal pain free. So glad to be off all the Tylenol #1 I was taking. My kidneys appreciate it. Thanks for listening. Debby

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Have never tried the new legal CBD/TCH (yet), but researching supplements for joint health and pain, I learned that MSM and Glucosamine had anti-imflamatory effects (besides their primary goals promoting joint health). I am relatively pain free, but when I feel some joint pain (big toe) in the day, I will pop an extra MSM and it does as well as acetaminophen. I've determined there is no risk, so I'll continue the experiment. For what its worth--realizing that variable joint aches are a far CRY from arthritis.

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@dk68

Have never tried the new legal CBD/TCH (yet), but researching supplements for joint health and pain, I learned that MSM and Glucosamine had anti-imflamatory effects (besides their primary goals promoting joint health). I am relatively pain free, but when I feel some joint pain (big toe) in the day, I will pop an extra MSM and it does as well as acetaminophen. I've determined there is no risk, so I'll continue the experiment. For what its worth--realizing that variable joint aches are a far CRY from arthritis.

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Thank you for reply! I learn something new everyday.

Debby

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@ckramer57

Hi! I would highly recommend looking into Dr. Susan Brown's Better Bones, Better Body Program. This is an online or sometimes in-person program in which you learn how to build bone strength naturally. I took the course ($350) and was able to improve my lumbar spine bone density t-score from -2.5 to -1.9 in 11 months of working the program. It's been worth every penny. As follow-up to the course, Dr. Brown and her staff offer ongoing support and guidance for all aspects of improving your bone health: diet, exercise, nutritional supplementation, stress reduction, etc.
The most advanced osteoporosis/bone quality testing out there that I know of is: newer DEXA scans which are used in combination with TBS (Trabecular Bone Score) technology and the Echolight REMS ultrasound technology. DEXA plus TBS is just beginning to show up in clinics in the US. Echolight REMS is primarily in Europe, but there is one clinic in North Carolina that offers Echolight scans (Central Carolina Orthopaedic Associates, CCOA). These two new ways of assessing Osteoporosis are game changers for those of us with bone health issues! The reason for this is that our DEXA scan scores are NOT reliable predictors of fracture risk. Fracture risk can only be determined by looking at both bone density and bone strength. The equation is: bone density + bone strength = bone quality. I know this, because I fractured my knee so badly as a result of a really low impact trauma accident, and yet I needed a total knee replacement. The radiologist told me I HAD to do something about my bones. All this and I only have osteopenia!

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You wrote that you were “able to improve my lumbar spine bone density t-score from -2.5 to -1.9 in 11 months of working the program”. That’s super-impressive.

I haven’t signed up for Dr. Brown’s program but I frequent her website, am always telling others to check out her site, especially the testing to rule out secondary causes of osteoporosis, and I have read one of her books.

My lumbar spine t-score was -3.9 in July 2019 and in December 2022 was -3.6. I don’t have any fragility fractures and I have had a TBS done.

Unfortunately, I didn’t learn about Dr. Brown before my endocrinologist pushed me toward meds. I’m off of them for now and for the last 1.25 yrs have been hitting the gym and slowing increasing the weights. I’ve tried to incorporate some of the exercises Cindi did (Cindi’s story on Dr. Brown’s website).

If you don’t mind sharing, did you do anything beyond just following Dr. Brown’s plan. I’m assuming you didn’t take any osteoporosis meds but did you/do you do HRT (hormone replacement therapy)?

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@fearfracture

You wrote that you were “able to improve my lumbar spine bone density t-score from -2.5 to -1.9 in 11 months of working the program”. That’s super-impressive.

I haven’t signed up for Dr. Brown’s program but I frequent her website, am always telling others to check out her site, especially the testing to rule out secondary causes of osteoporosis, and I have read one of her books.

My lumbar spine t-score was -3.9 in July 2019 and in December 2022 was -3.6. I don’t have any fragility fractures and I have had a TBS done.

Unfortunately, I didn’t learn about Dr. Brown before my endocrinologist pushed me toward meds. I’m off of them for now and for the last 1.25 yrs have been hitting the gym and slowing increasing the weights. I’ve tried to incorporate some of the exercises Cindi did (Cindi’s story on Dr. Brown’s website).

If you don’t mind sharing, did you do anything beyond just following Dr. Brown’s plan. I’m assuming you didn’t take any osteoporosis meds but did you/do you do HRT (hormone replacement therapy)?

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Hi @fearfracture!
I cannot do hormone replacement therapy with estrogen, as I had estrogen-driven breast cancer. In fact, the Arimidex that I take lifelong to prevent breast cancer recurrence, totally suppresses all my estrogen. In December of 2021, I was considering whether to take bone medication, when I became fearful of the side effects. That is when I discovered Dr. Brown and her Better Bones Program and took her online course in January of 2022. I was due for my biennial DXA bone scan in November of 2022. Since 2010, my t-scores have declined every two years. After incorporating as much of the Better Bones program into my life during the 11 months prior to this scan, I was able to see the first statistically significant increase in my lumbar spine's bone density (from a t-score of -2.5 to -1.9).
I believe that the Better Bones Program works when you attack bone loss from ALL six fronts outlined in the program:
Assessment, Alkaline Diet, nutritional supplements, enhanced digestion, exercise, and stress reduction. It is the combination of all of the above that improves bone density. Next, I will outline briefly, how I have incorporated the six parts of the Better Bones Program into my life in the past year or so.
For me, as to assessment of why my bones are weak, I understand that my bone quality has been negatively affected early menopause, Arimidex, stress, and many other factors. As for the Alkaline Diet, I kept a record of my Alkalinity (Dr. Brown teaches how to do that) and found that I was alkaline ~57% of the time. Re: nutritional supplementation, I added the supplements one at a time over the 11 months and still have two more to add to my regimen. I am religious about taking the supplements, with each of my three meals over the course of the day. I use the supplements that Dr. Brown recommends, as she ensures that they are highly absorbable. I have enhanced digestion by drinking my liquids warm and trying to eat more cooked vegetables. As for exercise, I did not do any formal exercise during my first 11 months on the Better Bones Program. However, I was much more active, in general, as we replaced our landscaping and I put in a lot of steps and hose-lugging last year. This year, I am transitioning to the YMCA's e-gym for strength training, as well as strength-training classes for Active Older Adults. Cardio is also readily available at the Y. I am not ready to take on a "Cindi-type" strength -training regime yet. And as for stress...I have seen firsthand that it hugely affects my alkalinity. I can eat an alkaline diet and be stressed and see my system become acidic and I can eat the SAD (standard American Diet) and be super relaxed and test alkaline. It is incredibly obvious when I track my urine's alkalinity every day. So, stress does a number on our bones, I truly believe.
I hope this helps answer some of your questions about the Better Bones Program and I hope you will consider investing in taking the course. You are already motivated to exercise and that is huge! However, your t-scores are concerning. What did your trabecular bone score say about the strength of the microarchitecture of your bones?

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@ckramer57

Hi @fearfracture!
I cannot do hormone replacement therapy with estrogen, as I had estrogen-driven breast cancer. In fact, the Arimidex that I take lifelong to prevent breast cancer recurrence, totally suppresses all my estrogen. In December of 2021, I was considering whether to take bone medication, when I became fearful of the side effects. That is when I discovered Dr. Brown and her Better Bones Program and took her online course in January of 2022. I was due for my biennial DXA bone scan in November of 2022. Since 2010, my t-scores have declined every two years. After incorporating as much of the Better Bones program into my life during the 11 months prior to this scan, I was able to see the first statistically significant increase in my lumbar spine's bone density (from a t-score of -2.5 to -1.9).
I believe that the Better Bones Program works when you attack bone loss from ALL six fronts outlined in the program:
Assessment, Alkaline Diet, nutritional supplements, enhanced digestion, exercise, and stress reduction. It is the combination of all of the above that improves bone density. Next, I will outline briefly, how I have incorporated the six parts of the Better Bones Program into my life in the past year or so.
For me, as to assessment of why my bones are weak, I understand that my bone quality has been negatively affected early menopause, Arimidex, stress, and many other factors. As for the Alkaline Diet, I kept a record of my Alkalinity (Dr. Brown teaches how to do that) and found that I was alkaline ~57% of the time. Re: nutritional supplementation, I added the supplements one at a time over the 11 months and still have two more to add to my regimen. I am religious about taking the supplements, with each of my three meals over the course of the day. I use the supplements that Dr. Brown recommends, as she ensures that they are highly absorbable. I have enhanced digestion by drinking my liquids warm and trying to eat more cooked vegetables. As for exercise, I did not do any formal exercise during my first 11 months on the Better Bones Program. However, I was much more active, in general, as we replaced our landscaping and I put in a lot of steps and hose-lugging last year. This year, I am transitioning to the YMCA's e-gym for strength training, as well as strength-training classes for Active Older Adults. Cardio is also readily available at the Y. I am not ready to take on a "Cindi-type" strength -training regime yet. And as for stress...I have seen firsthand that it hugely affects my alkalinity. I can eat an alkaline diet and be stressed and see my system become acidic and I can eat the SAD (standard American Diet) and be super relaxed and test alkaline. It is incredibly obvious when I track my urine's alkalinity every day. So, stress does a number on our bones, I truly believe.
I hope this helps answer some of your questions about the Better Bones Program and I hope you will consider investing in taking the course. You are already motivated to exercise and that is huge! However, your t-scores are concerning. What did your trabecular bone score say about the strength of the microarchitecture of your bones?

Jump to this post

Dealing with cancer had to be tough. I went through early menopause (age 32, I’m 54 now) for unknown reasons and didn’t get HRT.
I was diagnosed with hypothyroidism in 2017 and was taking 75 mcg of Levothyroxine daily until about one month ago when it was upped to 88 mcg.

My TBS results L1 - L4 = 1.287 (partially degraded microarchitecture). That is the average of all 4 lumbar vertebrae.

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 a good sign. Now, here's where I question my TBS results. 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 red (low TBS) the image of my spine, or TBS Mapping, shows each vertebrae shaded in these colors to show what my trabecular bone looks like. On page two, there is a chart 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 (the average)

My TBS scores 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. 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 or 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 there is a good amount of blank space captured, which I believe may be skewing my L4 TBS.

Lani Simpson, lanisimpson.com/ talks a lot about how most ppl (doctors, radiologists, technicians) have no idea what they are doing when it comes to DEXA scans and they make mistakes because of this. Ex. When I told the technician who did my DEXA w/ TBS that there was a difference of .5 in my t-scores, she made the comment, "A 1/2 pt is nothing." She apparently doesn’t know that a .5 difference in t-scores is not a 1/2 point, it's half of one standard deviation, which, when it comes to bone density, is HUGE.

Before I joined a gym, I asked my endocrinologist and an orthopedic doctor what exercises would be safe for me. Neither had much to offer so I tried seeing a physical therapist but the exercises she was recommending were way too simple/easy for me so I decided to join a gym and to take it slow. I spend 45-60 minutes at the gym 3 days a week. I’m small (4’11”, 107 lbs) and, after 1.25 yrs of going to the gym, I’m up to 110 lbs on the back extension machine, 260 lbs on the leg press, and I carry 60 lbs (30 lbs in each hand) when I do the farmer’s carry.

I may at some point sign up for Dr. Brown’s program and if money weren’t an issue I would sign up immediately. I’m still also considering getting a Marodyne LIV platform.

It’s awesome that you had so much success withDr. Brown’s program.

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Besides the blood and urine tests mentioned, There is a newer test out if Italy called a REMS ultrasound by Echolight. There are 5 in the US in NJ, NC, Tx, not sure the other too. It doesn’t measure density, but rather bone strength and fragility. What most don’t know is you can have low bone density but strong bones. On the other hand, you can have dense bones, but fragile bones that opens you up to fracture. REMS measures both and no radiation. This machine is used all over Europe and just starting to be accepted in the US. It’s worth looking into. You can google the company for more information. The other option is a trabecular test which measures fragility but only in the spine. It’s a software add to DEXA, but not every machine has one. Good luck!!

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@artscaping

Good afternoon @leeosteo, you are certainly asking the right questions. I, too, was overwhelmed by the number of medications available to help prevent fractures. My journey has been a difficult and sometimes frightening experience. One of the things I learned from my endocrinologist at Mayo Clinic was the importance of pursuing a FRAX evaluation. This is a test, a fracture risk assessment tool. You can learn more about it on this link.
http://www.frax.shef.ac.uk.
FRAX will give you the 10 year probability of fracture of the hip, and of a major osteoporetic fracture of the clinical spine, forearm, hip and shoulder.

You may want to discuss this option with your PCP. Absolutely, knowledge gives you decision making power. Do you have additional concerns at this point in your exploration of options to protect you from fractures?

May you be safe, free, and protected from inner and outer harm.
Chris

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Thank you!
I’m reading and researching until I get myself in a real funk and have to put it aside for a day.
My 2nd appointment with the Endocrinologist is next month, at that appointment, she expects me to give her an answer about the medication choices.
I appreciate all the information, opinions, advice and links that I’m finding on this site.
Thank you.

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@fearfracture

Dealing with cancer had to be tough. I went through early menopause (age 32, I’m 54 now) for unknown reasons and didn’t get HRT.
I was diagnosed with hypothyroidism in 2017 and was taking 75 mcg of Levothyroxine daily until about one month ago when it was upped to 88 mcg.

My TBS results L1 - L4 = 1.287 (partially degraded microarchitecture). That is the average of all 4 lumbar vertebrae.

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 a good sign. Now, here's where I question my TBS results. 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 red (low TBS) the image of my spine, or TBS Mapping, shows each vertebrae shaded in these colors to show what my trabecular bone looks like. On page two, there is a chart 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 (the average)

My TBS scores 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. 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 or 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 there is a good amount of blank space captured, which I believe may be skewing my L4 TBS.

Lani Simpson, lanisimpson.com/ talks a lot about how most ppl (doctors, radiologists, technicians) have no idea what they are doing when it comes to DEXA scans and they make mistakes because of this. Ex. When I told the technician who did my DEXA w/ TBS that there was a difference of .5 in my t-scores, she made the comment, "A 1/2 pt is nothing." She apparently doesn’t know that a .5 difference in t-scores is not a 1/2 point, it's half of one standard deviation, which, when it comes to bone density, is HUGE.

Before I joined a gym, I asked my endocrinologist and an orthopedic doctor what exercises would be safe for me. Neither had much to offer so I tried seeing a physical therapist but the exercises she was recommending were way too simple/easy for me so I decided to join a gym and to take it slow. I spend 45-60 minutes at the gym 3 days a week. I’m small (4’11”, 107 lbs) and, after 1.25 yrs of going to the gym, I’m up to 110 lbs on the back extension machine, 260 lbs on the leg press, and I carry 60 lbs (30 lbs in each hand) when I do the farmer’s carry.

I may at some point sign up for Dr. Brown’s program and if money weren’t an issue I would sign up immediately. I’m still also considering getting a Marodyne LIV platform.

It’s awesome that you had so much success withDr. Brown’s program.

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Interesting.
Lots of things in your post that I’ve never heard before.
More reading and research today for me!

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