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.

In terms of the journey, I don't even have my socks on yet. I await a response from the Endocrine and Osteoporosis Associates to invite me into their arms of restoration.

I had to look up MGUS. Magus is the singular of Magi, btw. So I immediately thought it wise to check on this!

All I have is my desultory DEXA scan results. So many tests, so many theories, so many options for treatment. I am well-read, untested! I'll add the MGUS pages to my Osteo Bookmarks!

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@dk68

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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Honestly, I'm concerned with any drugs. Right now I'm just working off what my PCP recommended (antiresoptive vs anabolic).

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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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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.

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@leeosteo

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.

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I think it is inevitable after a certain age, that we lose bone.

I hear you on waiting. If you can be on such and such a drug for such and such a period of time, and ditto for the next, and the next, and you add up the years, it seems we kind of run out of time if we live long, so common sense tells us to maybe wait .

But I hae read and been told that it is better to do the bone builders first (Forteo, Evenity or Tymlos) and then do Reclast to "lock it in" at which point we can maybe take a break with monitoring. That is when I would return to McCormick!

McCormick suggested Tymlos and so did my endo so I was fortunate in that way.

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@windyshores

I think it is inevitable after a certain age, that we lose bone.

I hear you on waiting. If you can be on such and such a drug for such and such a period of time, and ditto for the next, and the next, and you add up the years, it seems we kind of run out of time if we live long, so common sense tells us to maybe wait .

But I hae read and been told that it is better to do the bone builders first (Forteo, Evenity or Tymlos) and then do Reclast to "lock it in" at which point we can maybe take a break with monitoring. That is when I would return to McCormick!

McCormick suggested Tymlos and so did my endo so I was fortunate in that way.

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windyshores, are you in the northeast? I'm in CT roughly 1.5 hrs from Dr McCormick.

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I watched the McCormick basic vids today. I'm weighing buying one of his supplements -- compared to my usual pile of pills taken individually, it may be comparable cost. It can't hurt while I wait for an appt with the endo. Where did he suggest Tymlos?

I would love to sidestep the medical tsunami. But -4.9 has me freaked out, because I've not seen numbers like mine.

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@leeosteo

windyshores, are you in the northeast? I'm in CT roughly 1.5 hrs from Dr McCormick.

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I'm actually about the same distance away in RI. His info/record request list is daunting.

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I am in MA. @dk68 I met in person with McCormick and he was focused on meds for me with score in the mid to low- 3's. He suggested Tymlos but would have been okay with Forteo or Evenity: he was going with my preference as I remember.

McCormick will see people virtually as well. But he is really of more use after meds, I think, when we want to maintain. He did meds himself first.

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Go to the betterbones.com website and on the site search for osteoporosis tests. Dr. Brown has posted a list of tests that should be run to try to figure way your numbers might be so low. Additionally if you go to https://www.medimapsgroup.com/find-centers-with-tbs-osteo/ you can find an imaging center with DEXA w/ TBS capabilities in your state. TBS (trabecular bone score) give a better indication of bone quality. Most imaging centers in the US use either Hologic or GE Lunar scans; however, REM scanners are popular in Europe. The company that make it, Echolight, opened US HQs about a year ago and there are a few places in the US that have REM machines (I know there is one in NC and think there is one in NJ) I have a list if you want it let me know.

Why are you waiting 3 yrs for another DEXA? If you are being treated for osteoporosis you can have DEXAs annually covered by health insurance.

Did you doctor do BTM (bone turnover marker) testing before prescribing meds? You want to get a baseline before you start. If s/he didn’t just know most doctors who claim to treat osteoporosis, including mine, really only mean that they know how to write prescriptions for osteoporosis meds.

You might be interested in this osteoporosis online event. Lots of helpful info https://morebonehealth.byhealthmeans.com/?idev_id=30380

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@fearfracture

Go to the betterbones.com website and on the site search for osteoporosis tests. Dr. Brown has posted a list of tests that should be run to try to figure way your numbers might be so low. Additionally if you go to https://www.medimapsgroup.com/find-centers-with-tbs-osteo/ you can find an imaging center with DEXA w/ TBS capabilities in your state. TBS (trabecular bone score) give a better indication of bone quality. Most imaging centers in the US use either Hologic or GE Lunar scans; however, REM scanners are popular in Europe. The company that make it, Echolight, opened US HQs about a year ago and there are a few places in the US that have REM machines (I know there is one in NC and think there is one in NJ) I have a list if you want it let me know.

Why are you waiting 3 yrs for another DEXA? If you are being treated for osteoporosis you can have DEXAs annually covered by health insurance.

Did you doctor do BTM (bone turnover marker) testing before prescribing meds? You want to get a baseline before you start. If s/he didn’t just know most doctors who claim to treat osteoporosis, including mine, really only mean that they know how to write prescriptions for osteoporosis meds.

You might be interested in this osteoporosis online event. Lots of helpful info https://morebonehealth.byhealthmeans.com/?idev_id=30380

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Million thanks--this is very helpful.

My PCP gave me an Rx for Fosamax and told me we'd scan in 3 years. I thought it crazy with -4.9 lumbar. She is used to treating PM-OP and saw no reason to treat a man differently. There was nothing remarkable in my blood, she didn't think I needed any more tests or scans. Brilliant to refer for the scan, less so in response. I seem to have convinced her that I need to find out why I had this, before a treatment regime. She has agreed to refer me to an endo. A month on, I am still struggling to even get consultation!

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