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@fearfracture

I hope your fractures have healed and I can understand how you would disagree with my comment "Are you fracturing or have you had any fragility fractures? If you aren’t fracturing, there is no life-or-death situation." But that was directed to one person, a person who already has an osteoporosis diagnosis, meaning she is aware of her condition, and who seems to be taking action to prevent fractures.

In your case, it sounds like you had not yet been diagnosed w/ osteoporosis, meaning when you fractured. Am I correct? Did you 1st discover you had bone loss when you fractured?

It wasn’t until approximately 2.5 yrs after my diagnosis and after discussing my osteoporosis with 2 different doctors that I learned what my t-scores actually meant. In 2019, my lumbar spine t-score was -3.9. Both my PCP and my endocrinologist discussed my BMD with me and never explained anything. In the fall of 2021, I had an appt with a random teledoc dr. and he explained that every standard deviation was 10%.

From July 2019 through November 2021, I made zero adjustments to my physical activities. When I was diagnosed, I was in the middle of moving—lifting boxes, moving furniture. Additionally, in the fall of 2021, prior to my teledoc appt. I spent a good deal of time digging up well established bushes—root ball and all. It was grueling work. I was bending over and jumping up and down on a shovel spade. Fortunately, I had no issues.

As soon as that teledoc dr. explained that my lumbar spine BMD was approximately 39% less than the average 30 y.o., I spent a good deal of time researching how to move to protect my bones.

Two basic things ppl with osteoporosis should avoid are forward flexion of the spine and twisting of the spine. I used to bend over and touch my forehead to my knees and place my palms on the floor—I don’t do that anymore.

I practiced doing hip hinges while holding a yard stick to my back to keep it in line and I watched videos about how to do everyday tasks when you have osteoporosis: laundry, getting in and out of the car, the dishes, etc.

The thing about osteoporosis is doctors take DEXA scan results and act like T-scores mean the same thing for everyone and the truth is they don’t.

I frequently read posts from ppl whose t-scores are better than mine but they are fracturing. Fragility fractures are a bigger indication of bone quality issues than DEXA scan results.

One DEXA scan tells us very little about our bones. It can’t even show bone loss. It only shows approximate areal density of one’s bones at one point in time. Without more info, there is no way to know what that really means. I would bet a million bucks that my t-scores, even between the ages of 25-30, were never 0, meaning I believe my bones were probably always below the mean.

I’m not against taking osteoporosis meds when necessary but I am against taking any medications without a good idea that what you are taking is right for your condition.

Bisphosphonates don’t work for everyone, and I have seen some info that seems to suggest that taking bisphosphonates before anabolics reduces the effectiveness of the anabolics. Additionally, since it seems that it’s not a good idea to take any osteoporosis meds for too long and since other osteoporosis meds need to be followed by bisphosphonates, it seems that taking a little time to make sure there are no other issues that need to be addressed (parathyroid, thyroid, Celiac, T2D, etc) and finding the best solution is better than just taking an osteoporosis med just because that is the only “answer” most doctors can come up with.

In my case, I also have hypothyroidism. It was diagnosed in 2017 and if doctors did their jobs, it would have been caught decades before—there is even a chance I could have prevented it.

I started taking levothyroxine in 2017 and because my endocrinologist failed to do proper testing before prescribing osteoporosis meds, I’m now left wondering if my bones had started to improve on their “own” once I had the hypothyroidism diagnosis and started treating it. My own experience is just another example of why proper testing is critical before just starting meds.

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Replies to "I hope your fractures have healed and I can understand how you would disagree with my..."

@fearfracture I have had osteoporosis since 2007-
16 years now. I tried a lot of meds and worked with a doctor most of that time including 5 years on a cancer med that caused bone loss (and my docs would not put me on Reclast due to afib). I had traumatic fractures from a fall in 2006; more fractures from an unfortunate movement (and yes am careful, do tai chi, and had PT training on movements to avoid, but mistakes are made) in 2021. I finally managed to get on Tymlos in 2021. Because the dose is adjustable.

So I was very aware of my osteoporosis before my osteoporotic fractures and well aware of how to move. But for complicated reasons, I was not medicated- at all- despite my best efforts (I even went to an immunologist to try to get on Forteo).

My post wasn't really about myself. My point was simple: don't wait for fractures. People may feel strong and not be strong! I don't want others to go through what I have gone through. It is just so hard to accept side effects until you have fractured.

I included the opinion in my last post that insurance needs to approve anabolics before anti-resorptives since the latter can affect the effectiveness of the former. I am not sure but I think the insurance criteria for anabolics may be failing at two drugs, and/or serious DEXA/fractures.

ps when people talk about spinal fractures "healing" I am just not sure what that means. Vertebrae don't "heal" the way an arm break does. They stabilize, which is termed "healing," but the spinal distortion, pain and disability remains. Tymlos has made me a lot stronger but I will be grateful to have scores below -3 if ever possible. I accept my pain but hope others avoid it.

I agree completely that doctors tend to go with the most recent medicines for answers without doing any further testing. I've had to do tons of research and I don't like the side effects that can come with prolia, not to mention the fact that it's for a lifetime and if you get off of it you have to go directly on another medicine to keep from fracturing. If I had been made aware that during the first 5 years of menopause is when women tend to lose most of their bone mass I would have made a better effort to exercise more and get more calcium in my diet. I was put on Boniva after my first year when I had been diagnosed with osteopenia. Had no idea about anything other than this medicine would take care of it. My PCP finally told me that after 5 years I needed to get off of it. Did that weaken my bone mass? I don't know and they don't either because my last DEXA scan was after I had a fracture (from trauma). I'm just doing a huge eye roll though because NOW they want me to take huge amounts of calcium and vitamin D. A little late I think.