Confused about my TBS score

Hi @katgirl
I’m no expert, but you are around the same age that I was when first diagnosed, I was 58. We had similar dexa results, although you haven’t provided all of them in this post, I’m going by what is included- I was told I had severe osteoporosis, scared out of my mind, and told I needed to take Prolia. So I did.
Huge mistake! 7 years and 6 fractures later, I’m still paying for that decision.
If I had it to do over again, I would not start meds so young. Your scores are not bad and you’ve never fractured.
Up your supplements, there are a few that are known to help osteoporosis and up your exercise. The spine is the easiest to build bone. Lift weights, use a weighted vest etc…
I will tell you honestly that nutrition, supplements and exercise are not enough to build bone, especially after menopause.
If you are post menopausal and you are a candidate for hormone replacement therapy, I would go that route.
I wish I had done my research prior to starting any meds, I would have started HRT back then, and would have likely had a better outcome than I did.
Once you start osteoporosis meds, you have to commit to taking them the rest of your life. Not everyone has side affects, but for those do, it can be life changing.
You are doing the right thing by questioning what you are being told, following your instinct, and doing the research.
These are just my opinions based on my experience and many years of researching this topic.
Best,

Thank you so much for your kind reply! I am so sorry for what you have been through.

This is actually all the information I received on my DEXA. I have the report in front of me.

Yes, my age is giving me pause on starting down this path.

I am VERY active, but looking back over my adult life, during the warmer months my activity always skewed toward lots of biking, which does not help bones.

But during the colder months I always hike and walk. Now, Minimum 5 miles at a rapid pace when out to get exercise. I will have to make sure I walk/hike in addition to biking now. (And sadly I just bought a new bike and was planning to get out on it all the time.)

I haven't weight trained in years due to thoracic outlet syndrome, ripped rotator cuffs and a neck injury from a severe car accident in my 20's. I will have to find a safe way to do some sort of resistance training, because all I've done for years is cardio. I am a massage therapist, so I also can't put anymore stress on my wrists and elbows so I can continue to work.

I think I probably went through menopause early, but don't know for sure because I had a hysterectomy in my late 30's. I was of the generation that watched their mothers ripped off hormones for cancer risks and the ensuing side effects of that removal (my mother had crazy anxiety after abrupt removal. )

I sure wish I'd known that HRT wasn't vilified anymore or I might well have gone on hormones for a decade. At this point, I'm not sure I want to monkey with it. And my doctors do not support it. They just want me on the osteoporosis meds. But it's something else to investigate.

I am deficient in vitamin D but not as badly in the past, so I'm sure that has been a contributing factor. I have to find a D supplement my stomach can tolerate. I have to get back to that.
But I don't know if supplementation works when I am on a PPI (see below)

Other contributing factors; I am on a PPI, omeprazole for decades. No one ever told me it can contribute to osteoporosis. 🙁

I have celiac disease and was undiagnosed for years, which would have compromised all of my nutrient absorption.

Like I said, I go back and forth daily. I think if I didn't have horrible side effects to everything (including supplements) I would feel less averse to taking drugs. It's no fun to be horrible sick from meds all the time. At least the osteoporosis drugs bypass the stomach for the most part with injections and infusions. That is my really weak link. I have a horrible delicate stomach.

Anyway, I have realized I probably shouldn't start a 12 month course of therapy not knowing if my insurance will change mid stream, so I think the soonest I would want to start all this, IF I do choose to start all this, is in December or January. And by that time I'd be 9 months out from my two year dexa scan.

Anyway, I'm not feeling as pressured to make a decision now which is good.

I just don't want to lose my endo for being "non compliant" and end up back with my GP who will only give reclast.

I will be very interested to see what my endo says about the TBS score.

Thanks again for your input.

you sound like a very strong person, that has gone through more than your share of health concerns. You’ve taken care of yourself and you’ve definitely educated yourself on a lot of the important details around osteoporosis.
I have always taken excellent care of my health, eat well, exercise, take the needed supplements etc.
I went through menopause in 2010, I was 50 years old. It wasn’t too long before that when the WHI study came out that negatively impacted health care for millions of women.
Is it any coincidence that the number of osteoporosis cases has increased so much since that time??? We need estrogen to protect our bones that’s clear.
HRT was never offered to me as an option for my overall health or even for bone health.
I was however prescribed 5 different osteoporosis meds in the last 7 years. All have caused side affects that made everyday living very difficult. The first med I was prescribed was Prolia. I became seriously ill from that drug and after 3 injections I had to stop. I took fosamax as a relay drug and after 6 months, lost 25% of my body weight and could no longer go out of the house. 1 1/2 years later I had 6 pelvic fractures that were considered rebound fractures from stopping the Prolia.
Since then I’ve been on Forteo, Actonel, and finally Evista.
I also have several autoimmune conditions. One that was triggered by Prolia which has caused me to lose 50% of my hair. It’s scarring alopecia, so it will never grow back.
I believe that my history of autoimmune conditions does not make me a good candidate for osteoporosis meds.
At 65 years old, and with the blessing of my cardiologist and family doctor, I have started HRT. 15 years out from the start of menopause.
My gynecologist was against this, citing the WHI study- are you kidding me!!! That study had been debunked for years!!
I found a gynecologist near me that specializes in hormone optimization.
I’ll see how this all goes. But I am hopeful for the first time in a long time. Mostly because I’ve taken back control of my health decisions.
You could always look for a specialist near you, just for a consultation regarding HRT, and have it as part of your toolbox.
Don’t ever think you have to stay with a health provider, sometimes they just aren’t a good fit and you can find someone who is more aligned with your thinking.

You might be interested in reading this journal report on the utility of TBS in osteoporosis management:
https://erar.springeropen.com/articles/10.1186/s43166-024-00252-x
Here's a link specifically to the discussion summary of the article: https://erar.springeropen.com/articles/10.1186/s43166-024-00252-x#Sec24

My takeaway from reading the article is that TBS can be helpful in determining fracture risk but should not be relied on as the only measure for determining how to manage osteoporosis.

I would agree that since your TBS score was included in your FRAX, it did lower your risk. Sounds like good news!

Sounds like a good discussion to have with your doctor on whether you should go ahead with anabolic therapy or if they have other suggestions that don't include medication.

Thank you so much for the links! I

You have low bone mass but good microarchitecture.
This is the silent part of osteoporosis. Your network of trabecular bones are still intact. The loss of density can eventually results in disconnection. You don't fracture, but you become more vulnerable to compression.
https://www.researchgate.net/figure/Cancellous-bone-occurrence-and-macrostructure-as-illustrated-here-with-the-femur-of-a_fig1_328641052
It looks at though at 56 you've begun to lose bone density and you are catching osteoporosis before it causes permanent damage to your bones. I'm guessing that the loss of estrogen and that the next couple of years would be the time of greatest loss unless you engage treatment.
You are in a great position to protect your bones.

And this is how I see-saw back and forth. I don't disagree with what you are saying.

I just wish that I had more than one Dexas scan under my belt. What if I've stabilized?

I have a feeling I went through menopause earlier than the average. If so, I really should have been on HRT. No one ever talked to me about it.

I know for sure I was done by 49, because my other endocrinologist (for my rare, one of a kind neuroendocrine tumor) ran tests to find out if I was done with menopause because I was having some weird flushing and they were trying to rule out hot flashes as a cause or if I had another weird cancer brewing. She ran the test in May 2018 and it showed I was already past menopause. But I don't know how long past because I didn't have periods to track without a uterus (hysterectomy in my late 30's, ovaries left in tact)

Perhaps, if I hadn't been thick in the cancer weeds menopause and estrogen and bone loss might have come up but not a single person talked to me about it. But granted I was mainly meeting with the cancer specialists all this time and didn't even have a yearly physical until two years ago. It was just never offered. So I was being checked head to toe by the cancer docs but not getting the usual medical attention.

If I went through menopause at say 45 (I don't know if this is what happened), then wouldn't a lot of my bone loss be from the estrogen drop then? I wish I had more years of scans to know!

I also wonder what having blood sugar below 50 for years from the undiagnosed tumor did to my bone health. I think people with diabetes are more likely to have osteoporosis but I don't know if that is from high blood sugar, or low (I only had extremely low). But again, that tumor has been removed (along with my spleen and half of my pancreas) so I have normal blood sugar now (but am still somehow hypoglycemic and tend to need to eat every 4 hours or so)

But yes, I hear you.

I think on a day like today, where we are having a heat wave in WI (60 degrees in March!!) where I should be out hiking and biking with friends but instead have come up sick with a virus and feel crappy, it's hard to think about taking meds that might make me feel like this all the time. (Especially because I have such issues with fatigue on a day to day basis anyway.). And I did everything to avoid getting sick this year, just met up with friends outside most of the winter, because last year I was sick for TWO MONTHS and wanted to avoid that. And then I got sick anyway. OK, whine fest over. But in WI, days like this are GOLD, and to miss them after being healthy all winter and giving up a lot of fun stuff to STAY healthy, it really SUCKS. OK, NOW the whinefest IS over.

Oh shoot, the link didn't work.

katgirl,
you could have a self-pay dxa. Last I looked they were from 79 to $100 at separate radiology labs. Much more at the hospitals. Dxa makes smaller bone look less dense.

Given the early onset of pause, you have probably stabilized. But you've stabilized in a negative growth pattern. You don't currently have enough estrogen to restore bone.
You could take HRT now. Some, on site, are noting positive effect with initial replacement starting ten years after menopause. And it might protect your brain as a bonus.
I'm sorry you're sick and missed a sunny day. I feel so much more alive outside in the sunshine.
It's possible that you won't have side effects, but don't think about it until you are feeling better.

katgirl, I really just want you to look at the picture of trabecular bone. This one is actually better. TBS looks at all those tiny bone. Your network is intact. Many people, like me, are compromised. A thousand of those tiny connection can break without breaking or compressing the bone. I have many broken connections, but no compression. "Degraded" my TBS says.
But I'm on Forteo and it's really working restructuring those connections.
https://www.istockphoto.com/photos/trabecular-bone