P1NP and CTX

Posted by codythedog @codythedog, Mar 29 9:48am

Hello,
I have never had P1NP and CTX tests done before. I have seen an Endo chronologist, and she did not order these. I would like to see if my Primary care would order these so that I could have a baseline along with the Bone Density Tests. I am trying to do as much as I can without medication as of yet. Let me know if anyone has had success with their Primary Care Doctors.

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

Profile picture for babs10 @babs10

@loriesco That’s a fair perspective, and it does line up with what that paper is saying. BTMs like P1NP and CTX aren’t critical for diagnosing osteoporosis, and they’re not something every patient needs.

Where they can be very helpful is on the management side. They give earlier feedback on whether a treatment is having the expected effect, which can be useful in some situations especially when you don’t want to wait a year or two for changes on a DEXA scan. But even then, they don’t always change what a doctor would do, which is probably why some clinicians don’t rely on them heavily.

So I’d agree they’re not essential, and I still think they can be a useful tool in the right context. It probably just depends on the individual case and how much that early feedback would actually influence treatment decisions.

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@babs10 well I am an overachiever and if I can get a baseline on something, I always want to do that, myself! 🙂

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Profile picture for babs10 @babs10

@loriesco That’s a fair perspective, and it does line up with what that paper is saying. BTMs like P1NP and CTX aren’t critical for diagnosing osteoporosis, and they’re not something every patient needs.

Where they can be very helpful is on the management side. They give earlier feedback on whether a treatment is having the expected effect, which can be useful in some situations especially when you don’t want to wait a year or two for changes on a DEXA scan. But even then, they don’t always change what a doctor would do, which is probably why some clinicians don’t rely on them heavily.

So I’d agree they’re not essential, and I still think they can be a useful tool in the right context. It probably just depends on the individual case and how much that early feedback would actually influence treatment decisions.

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@babs10 my doc only did CTX at my request after 8 months of fosamax. Now after about a year after reclast he is doing that test. After fosamax CTX was 58, after reclast it is 76, he is thrilled with that. I asked about getting another yearly DEXA scan but unless the “doctors” at the insurance companies allow it I have no idea if reclast helped a little, or a lot, or hardly at all. He did point out that since my one bad number was -3.5 (others -2.6 to -2.8 before reclast) that number could not have possibly changed enough to change the course of treatment. I am scheduling an out of pocket DEXA since I can’t stand not knowing my numbers (good or not so good) after treatment with a very powerful drug. After they tell us DEXA is the gold standard, BTMs seem hit or miss?

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It is beyond reason that docs do not to a baseline test before putting anyone on an Osteoporosis drug, and then have any judgement at all to pass on the test score 8 months later. SMDH. I apologize for my deep frustration, and my voicing it.

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Profile picture for mlwh @mlwh

It is beyond reason that docs do not to a baseline test before putting anyone on an Osteoporosis drug, and then have any judgement at all to pass on the test score 8 months later. SMDH. I apologize for my deep frustration, and my voicing it.

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@mlwh I 100% agree with you. It's extremely frustrating.

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Profile picture for jozer @jozer

@babs10 my doc only did CTX at my request after 8 months of fosamax. Now after about a year after reclast he is doing that test. After fosamax CTX was 58, after reclast it is 76, he is thrilled with that. I asked about getting another yearly DEXA scan but unless the “doctors” at the insurance companies allow it I have no idea if reclast helped a little, or a lot, or hardly at all. He did point out that since my one bad number was -3.5 (others -2.6 to -2.8 before reclast) that number could not have possibly changed enough to change the course of treatment. I am scheduling an out of pocket DEXA since I can’t stand not knowing my numbers (good or not so good) after treatment with a very powerful drug. After they tell us DEXA is the gold standard, BTMs seem hit or miss?

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@jozer "Gold standard" is the party line for sure. Personally, I think BTMs are essential so you know if your meds are working or not. I don't want to be on one for one minute longer than necessary if it's not doing what it's supposed to do.

P.S., I have paid out of pocket for a DEXA - be sure to get a "good faith estimate" from wherever you are getting in. That locks in a ceiling price that they can't exceed.

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I will be paying out of pocket...20% discount if I pay cash at the same facility my doctor originally sent me too. Seems like a doctor's referral is necessary for most facilities; mine gave me one but Medicare will not cover - I get one every 2 years. If I have to trade off with Medicare coverage and pay for one every other year that's fine. Not ideal of course but we pay A LOT for care along with A LOT for insurance, whether through an employer or Medicare. I also think BTMS are essential; another tool to help define treatment. Not everyone does, however. Some facilities also tack on TBS; would love that (the more info on our bones the better one would think) but not everyone has this; I will not be able to get it as the facility my doc gave me a referral to does not have TBS software. And I can't go anywhere else without a referral I don't think (per research thus far).

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