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68 yr. man with -4.9 in L4!

Osteoporosis & Bone Health | Last Active: Mar 22, 2023 | Replies (38)

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@windyshores

@leeosteo my NTX looked normal too, but I had serious bone loss. I think those tests are used comparatively to see if meds are working, but I am not sure.

Interesting that you have sort of held steady. But maybe you could do an anabolic, get your scores up, and then hold steady!

My endo won't use Prolia because of the drop off in bone density when it ends. But that's him.

My lumbar spine and femur neck were beginning osteoporosis way back in 2006- 17 years ago! I went on cancer meds 2015-2020 that removed any remaining post-menopausal estrogen and bones dropped 5% first year, then less for the next 4.

Before cancer treatment my spine was -2.7, in 2014, then -3.1 in 2016, -3.4 in 2018, and -3.7 in 2021.

Left femur was -2.8, then -3.9, -3.1, -3.3. (Note the -3.0 which does not fit the pattern. I look for trends over the years and don't freak out about one value anymore!)

I tried Fosamax years ago and could not tolerate it (GERD). I tried really hard to get on Forteo in 2007 or so, and even went to an immunologist to try to desensitize.

During cancer meds for 5 years, my oncologist wanted me on Reclast but endocrinologist was afraid of setting off afib.

I tried to get into study for the Tymlos patch thinking that Tymlos injections would set off similar reactions as Forto. I actually blamed the solution, not the med. Who knows. I am referring to immediate reactions, not side effects.

Net result of all my efforts was that I was still unmedicated when I fractured in 2021. I tried Tymlos at full and half dose and , whether related or not, landed in the hospital with an afib episode.

I spoke with endo, cardiology and others and thought about Evenity but my docs agreed I could retry Tymlos at a lower dose. At that point, my doc would have been happy with even half the usual dose.

I started at two clicks out of 8 on the Tymlos pen and moved up slowly.

I do take calcium, D3, Magnesium, B complex and folate and did tai chi for years.

I really really wanted to go on meds. If people can tolerate them at all, even with some side effects, I encourage it to avoid painful disabling fractures.

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Replies to "@leeosteo my NTX looked normal too, but I had serious bone loss. I think those tests..."

I've had two NTX tests, 3 years apart (2019-2022) and both results are below the range. I saw a Youtube video with Keith McCormick where if NTX scores are low than giving a person an antiresorptive med will create more problems, essentially stopping bone breakdown... and the primary cause might be sluggish osteoblasts. This is what prompted a second opinion with an endocrinologist.

I'm not a fan of Prolia either. The longer your on it the harder it is to get off it safely. I saw a study that you should not be on it longer than 2 years for this reason.

The question in my mind is if I'm holding relatively steady the past 3 years (without meds) does that mean there is another reason for the slow decline? I'm a very picky eater and I've realized my diet needs major adjustment. I eat well, whole foods vs processed. I just don't eat enough protein, calcium, D, K, and magnesium. Could this be a major contributor to my condition along with post menopause? Can I fix this, at least temporarily, with my diet? And delay meds to when I may really need them in 5-10 years from now? (These meds do have limits in terms of risks and number of years you can take them safely) I'm hoping the endocrinologist could shed some light on this.