68 yr. man with -4.9 in L4!

Posted by dk68 @dk68, Mar 13, 2023

A first DEXA has revealed that I have osteoporosis in one my femoral necks (-2.7) and average -4.4 in Lumbar vertebrae (one region was -4.9). I am a small-framed (wrist diameter 6.5") man, just shy of 5'5, 140 lbs. I believe my GP ordered the scan, because my stature is closer to her average post-menopausal patients. It was a good call (she claimed it was because I was underweight (I'm not) and had been treated for prostate cancer). I have, however, no risk factors: normal weight, normal diet, normal exercise, no GERD, no corticosteroids, no HT for prostate cancer (brachytherapy, PSA undetectable), normal testosterone levels, normal thyroid, and no signs in blood of parathyroid issues. She gave me an Rx for Fosamax, told me to gain weight (!), lift weights, take Ca supplements--we'll scan again in 3 years! I've requested that I see an endocrinologist.

Does anyone have experience with Lumbar Numbers like mine? Is my GP being cavalier in her treatment?

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

@dk68

Do you remember what your score was when your sword tai chi stabbed your in the back?

I am totally freaked out by my numbers! Since, osteoporosis numbers like mine are not discovered until there is a fracture, I've not seen any numbers like mine scouring the internet, associated or not with low-impact fractures.

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I did not have an injury from a sword doing tai chi! I practiced that form of tai chi, which requires a lot of strength.I was just saying that I felt strong and powerful at the time. No symptoms of osteoporosis.

I had 4 thoracic fractures in 2006 from a horrible fall, causing my upper back to hit the corner of a concrete (icy) step. That was before I had actual osteoporosis.

In 2021 I had three lumbar fractures from an unwise movement (similar to pulling a bathing suit on while seated in the car). My scores at the time were between -3.4 and -3.7 for lumbar spine.

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@windyshores

@pami I wish you had been able to go on Tymlos, Forteo or Evenity. A score of -3.6 is still very risky. I fractured three lumbar vertebrae at that level, with one unwise movement. (I also have 4 thoracic fractures from a fall, not osteoporotic).

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I know. I even had my insurance ok the Forteo. They don't pay for Tymlos. My coinsurance for Forteo would be $7,000.00 a year!

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@windyshores

@pami I wish you had been able to go on Tymlos, Forteo or Evenity. A score of -3.6 is still very risky. I fractured three lumbar vertebrae at that level, with one unwise movement. (I also have 4 thoracic fractures from a fall, not osteoporotic).

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windyshores, could you share your osteoporosis/med/T Score journey briefly?

Here's my progression. My PCP wants to put me on Prolia. I've scheduled a second opinion with an endocrinologist. I'm debating whether to try a natural approach. The reason is I've been holding at -3.3 on spine and my NTX test shows I'm not breaking down bone quickly. I've noticed a huge deficit in my diet in all essential bone vitamins and minerals. All this will be discussed the endocrinologist. I'm guessing she will be concerned with hip, femoral, forearm numbers.

2014 - spine -3.5, hip -1.7, femoral neck n/a - started Alendronate
2016 - spine -3.3, hip -1.5, femoral neck -2.0 - Alendronate
2018 - spine -3.3, hip -1.9, femoral neck -2.6 - Alendronate
2019 - 2022 - Alendronate holiday
2022 - spine -3.3, hip -2.2, femoral neck -2.7, forearm -2.4

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@leeosteo

windyshores, could you share your osteoporosis/med/T Score journey briefly?

Here's my progression. My PCP wants to put me on Prolia. I've scheduled a second opinion with an endocrinologist. I'm debating whether to try a natural approach. The reason is I've been holding at -3.3 on spine and my NTX test shows I'm not breaking down bone quickly. I've noticed a huge deficit in my diet in all essential bone vitamins and minerals. All this will be discussed the endocrinologist. I'm guessing she will be concerned with hip, femoral, forearm numbers.

2014 - spine -3.5, hip -1.7, femoral neck n/a - started Alendronate
2016 - spine -3.3, hip -1.5, femoral neck -2.0 - Alendronate
2018 - spine -3.3, hip -1.9, femoral neck -2.6 - Alendronate
2019 - 2022 - Alendronate holiday
2022 - spine -3.3, hip -2.2, femoral neck -2.7, forearm -2.4

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Are you skeptical about switching to the bone-building drugs? Your scores-history with Alendronate is why I am hoping to jump to the anaerobic treatments first. I feel as if my -4.9 lumbar score is a sword of Damocles hanging over me. Until I get to the endocrinologist, I am trying to get the nutrients (including Vitamin K2 (mk7) and walking (worried about lifting weights with my numbers).

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@pami

I know. I even had my insurance ok the Forteo. They don't pay for Tymlos. My coinsurance for Forteo would be $7,000.00 a year!

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@pami did you check on financial assistance for Tymlos (call Together with Tymlos) or Forteo?

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My insurance said they would check to see if they could get me a lower rate so I might have the doctor write me a prescription so the insurance could go ahead.

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@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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@pami

My insurance said they would check to see if they could get me a lower rate so I might have the doctor write me a prescription so the insurance could go ahead.

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@pami you can also call the companies.....

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@windyshores

@pami you can also call the companies.....

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Thank you!

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@dk68

Thanks for the advice. I was thinking similarly. I thought my numbers merited more attention to ameliorating the loss of bone than curbing it enough to allow bones to rebuild (by the likes of Fosamax). Prolia worked wonders on my 80+ year old mother-in-law. [I believe the box claimed it is not for men, but I've seen articles that contradict that.]

I've read that a key factor in proper regulating Ca in blood and bone is the conversion of sex hormones to estradiol. I believe that the advanced drugs you mention targets that mechanism. An expert might be able to address this. I am waiting on a consult with an endocrinologist specializing in osteoporosis. At this point, I don't know if my other bones bear comparable degradation of BMD--not included in the scan.

I should stress that I am absolutely symptom-free (if my anxiety regarding my numbers is ignored). None of the usual factors predisposing one to osteoporosis are present. Normal blood, normal Testosterone levels, no GERD, steroid, hormone-ablation medications, no fractures or balance problems, except I am undeniably small-boned for a man. This hardly seems sufficient to explain my conditions. Loss of estrogen can't explain it!

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have you been checked for MGUS?

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