1. < Osteoporosis & Bone Health

Bone Marker Results -??

Posted by 255anny @255anny, Apr 18 3:03pm

In an effort to get the best medical care I can for my severe Osteoporosis, I asked my Endo Dr to include Bone Markers. She was ok with it but expressed it's not always a concrete result.
Results so far -
9-19-24. After 2 years of Evenity
75. score for CTX
11 score for Osteocalcin

10-21-24
112 for CTX

4-14-25. I had an infusion of Reclast 12-1-24
81 score for CTX

I plead total ignorance trying to understand these results. I have an appt with my Dr in late August, 2025 and I'd like to feel comfortable with her suggestions for further meds. (ugh) At my last appt, she thought I could go back to Evenity after the 1 infusion of Reclast, then I assume back to Reclast for 1 yr. I refused Prolia. Reclast was rough! But how do the results of the markers dictate what drug sequence and the timing of the meds? Thanks everyone.

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awfultruth | @awfultruth | Apr 21 9:39am

@255anny, The CTX scores you provided show no problem with your CTX at the times you tested. It's good you have gotten these markers done despite the doctors not being that interested in them. You've gotten some good suggestions here. I agree with Gently's suggestion to be sure to have your parathyroid checked. You mentioned suspecting your gut issues being the likely suspect but it's good to be as thorough as possible because you could have more than one issue causing bone loss.
As to CTX levels, Lani Simpson who I consider a great resource on Osteoporosis, suggested in one of her classes that a very general guideline would be that CTX levels below 200 would indicate you are preventing bone loss. That if a med dropped your CTX into that range it was being effective. If your CTX started to climb to 250 - 300 then you need to consider another round of treatment (like if you had Reclast 2 years ago and your CTX has climbed back to 300 then it's probably time to have another round).
She suggests that at 300-400 you might have modest bone loss but at 500-700 you would likely have double or triple the loss you would have at 300-400.
I hope I'm not misquoting her as this is partially from memory and partially from my notes.

For myself I have followed Evenity with monthly Risedronate tablets. I have been getting my CTX tested monthly. That's my idea not my doctors. What I found was that monthly Risedronate cannot hold my CTX down. I have a baseline in the 260's for CTX after Evenity. With monthly Risedronate my CTX starts heading towards 400. If I take a monthly dose mid-month also then I keep my CTX below 200. I've tried this twice and confirmed with the monthly dose it goes up rapidly. With every two weeks it stays below 200. So I'm taking Risedronate every 15 days now.

I included my experience above as an example of how testing CTX can lead to much better modulation of bone loss and gain. I have not had another DEXA yet to verify that the CTX has been a reliable indicator of my bone gain/loss but I'll do that probably when it's been a year since the last DEXA. Fingers crossed.

Best of luck with improving your bone health.

REPLY
2 replies
255anny | @255anny | Apr 23 9:05pm
In reply to @awfultruth "@255anny, The CTX scores you provided show no problem with your CTX at the times you..." + (show)
@awfultruth

@255anny, The CTX scores you provided show no problem with your CTX at the times you tested. It's good you have gotten these markers done despite the doctors not being that interested in them. You've gotten some good suggestions here. I agree with Gently's suggestion to be sure to have your parathyroid checked. You mentioned suspecting your gut issues being the likely suspect but it's good to be as thorough as possible because you could have more than one issue causing bone loss.
As to CTX levels, Lani Simpson who I consider a great resource on Osteoporosis, suggested in one of her classes that a very general guideline would be that CTX levels below 200 would indicate you are preventing bone loss. That if a med dropped your CTX into that range it was being effective. If your CTX started to climb to 250 - 300 then you need to consider another round of treatment (like if you had Reclast 2 years ago and your CTX has climbed back to 300 then it's probably time to have another round).
She suggests that at 300-400 you might have modest bone loss but at 500-700 you would likely have double or triple the loss you would have at 300-400.
I hope I'm not misquoting her as this is partially from memory and partially from my notes.

For myself I have followed Evenity with monthly Risedronate tablets. I have been getting my CTX tested monthly. That's my idea not my doctors. What I found was that monthly Risedronate cannot hold my CTX down. I have a baseline in the 260's for CTX after Evenity. With monthly Risedronate my CTX starts heading towards 400. If I take a monthly dose mid-month also then I keep my CTX below 200. I've tried this twice and confirmed with the monthly dose it goes up rapidly. With every two weeks it stays below 200. So I'm taking Risedronate every 15 days now.

I included my experience above as an example of how testing CTX can lead to much better modulation of bone loss and gain. I have not had another DEXA yet to verify that the CTX has been a reliable indicator of my bone gain/loss but I'll do that probably when it's been a year since the last DEXA. Fingers crossed.

Best of luck with improving your bone health.

Jump to this post

Thank you so much for your help. I never really understood the CTX numbers and now I do!
We really do have to push to get the best health advice we can. I'm impressed you are getting your CTX every month! Are you just doing that on your own or is your Dr sending an order to the lab?

REPLY
julie59 | @julie59 | Apr 24 9:27am
In reply to @gently "255anny, good thinking. I'll throw some ideas your way. When I hear about the anabolics not..." + (show)
@gently

255anny, good thinking. I'll throw some ideas your way.
When I hear about the anabolics not working two things come to mind: first parathyroid and second kidneys.
You may know that your have four parathyroid glands. If even one of them is not working the anabolics won't wore either. The best way to check the parathyroid glands is to image them. This can be the trouble that remains undiscovered with osteoporosis. Kidneys usually announce themselves through lab work.
Even the low response to Evenity indicates that there is an unknown factor draining your bones.
Do you have a before and after density number for Forteo use.
Some experts, especially those obtaining their degrees before 1990, aren't using bone markers. You might ask , at least before and after the first several months of a drug that barely worked in the last application.
I agree that it is important to always listen, listen first and respectfully, to the experts we've engaged.
How can we help to load your guns with good ammunition?

Jump to this post

I am glad you mentioned the effect of your parathyroid gland, because my doctor never did.
I have had one parathyroid gland removed. Are there any anabolics that will not help with osteoporosis if you are missing one parathyroid gland?

REPLY
1 reply
ncabbott | @ncabbott | Apr 24 9:46am

Why did you refuse Prolia?

REPLY
dmshope | @dmshope | Apr 24 12:30pm
In reply to @awfultruth "@255anny, The CTX scores you provided show no problem with your CTX at the times you..." + (show)
@awfultruth

@255anny, The CTX scores you provided show no problem with your CTX at the times you tested. It's good you have gotten these markers done despite the doctors not being that interested in them. You've gotten some good suggestions here. I agree with Gently's suggestion to be sure to have your parathyroid checked. You mentioned suspecting your gut issues being the likely suspect but it's good to be as thorough as possible because you could have more than one issue causing bone loss.
As to CTX levels, Lani Simpson who I consider a great resource on Osteoporosis, suggested in one of her classes that a very general guideline would be that CTX levels below 200 would indicate you are preventing bone loss. That if a med dropped your CTX into that range it was being effective. If your CTX started to climb to 250 - 300 then you need to consider another round of treatment (like if you had Reclast 2 years ago and your CTX has climbed back to 300 then it's probably time to have another round).
She suggests that at 300-400 you might have modest bone loss but at 500-700 you would likely have double or triple the loss you would have at 300-400.
I hope I'm not misquoting her as this is partially from memory and partially from my notes.

For myself I have followed Evenity with monthly Risedronate tablets. I have been getting my CTX tested monthly. That's my idea not my doctors. What I found was that monthly Risedronate cannot hold my CTX down. I have a baseline in the 260's for CTX after Evenity. With monthly Risedronate my CTX starts heading towards 400. If I take a monthly dose mid-month also then I keep my CTX below 200. I've tried this twice and confirmed with the monthly dose it goes up rapidly. With every two weeks it stays below 200. So I'm taking Risedronate every 15 days now.

I included my experience above as an example of how testing CTX can lead to much better modulation of bone loss and gain. I have not had another DEXA yet to verify that the CTX has been a reliable indicator of my bone gain/loss but I'll do that probably when it's been a year since the last DEXA. Fingers crossed.

Best of luck with improving your bone health.

Jump to this post

THere may another consideration to take into account when looking at bone markers and that is the proportaion between the traditional markers CTX ( boen dissolvers) vs bone builders ( P1NP).
When I was on tymlos my P1NP was high 92 and CTX was 500. This proprotion was acceptable. AS my PN1P normalize the CTX also had to go down or I would be losing bone.
So one cannot simply say a CTX above 400 is too high. You must know more. There are people who normally have high bone trunover and people who normally have low bone turnover. SO the numbers for one that are good are not the same as the numbers for the other. The proportion of building vs dissolving must be considered. Meanwhile, any CTX below 100 must be carefuly watched so not to be vulnerable to bone fractures and ONJ.
I hope this helps... Sending postive energy for your healing

REPLY
gently | @gently | Apr 24 12:32pm
In reply to @julie59 "I am glad you mentioned the effect of your parathyroid gland, because my doctor never did...." + (show)
@julie59

I am glad you mentioned the effect of your parathyroid gland, because my doctor never did.
I have had one parathyroid gland removed. Are there any anabolics that will not help with osteoporosis if you are missing one parathyroid gland?

Jump to this post

No. Forteo and Tymlos can be ineffective if a damaged gland remains. But many take these anabolics after surgery with success.
Honestly most all drugs trip more than one lever. And not only are are providers unaware, but the entire scientific community is unaware. The awareness that arises in each one of us is often denied ( with an eyeroll).
There was a fascinating new one (for me) from pmshope about the parathyroid just last week. I'm looking for the link.

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