I, a 79-yr old Indian American woman, am about to complete my Tymlos treatment and had bllod work done before meeting my Endo.
- My basic metabolic panel #s are normal.
- CTX is 321
- P1NP is 49.
After joining the Mayo Osteo group, I learned about CTX and PiNP markers for OP. I don't have any CTX and P1NP values to compare with. For these stand-alone #s, any guidance on what these #s mean?
Thanks
I, a 79-yr old Indian American woman, am about to complete my Tymlos treatment and had bllod work done before meeting my Endo.
- My basic metabolic panel #s are normal.
- CTX is 321
- P1NP is 49.
After joining the Mayo Osteo group, I learned about CTX and PiNP markers for OP. I don't have any CTX and P1NP values to compare with. For these stand-alone #s, any guidance on what these #s mean?
Thanks
Further to the above post, you asked if I had fractures. Yes 8 in the past 18 months - all in my feet. Crutches for 6 months and limited ability to walk ... but I am walkign slowly now and am so gratufedul I want to create a vision for my life that is promising and hopeful Good luck to you.
Just curious about your fractures in your feet. I have been struggling with 2 metatarsal fractures for 26 months that are very slow to heal. I have taken a variety of OP meds. I have had OP since I was 35. I am now 56. I have done pretty well until 2 years ago with my foot. My P1NP is < 10 and CTX is 76. Did your fractures finally heal? What bones? What finally helped? Thanks!
Wow. Thanks so much for this. My bone density tests showed a decrease after 6 years of no meds and my recent blood test showed a CTX 476 number which I couldn't interpret. The Dr who read the report wrote Normal - I ordered the test online and paid for it myself. My endocrinologist thought it useless.
She felt at my last visit that I shouldn't take Forteo again because of the black box label however I know that's been removed.
My only issue remains the same as it was 6 years ago after Forteo. I can't take Fosamax or Actenol and I refuse to take Prolia. This leaves Reclast and I've read horror stories of long-term effects.
My last bone density showed no change but my spine is -4.0.
I exercise and walk daily and am tempted to stay off meds altogether. Any advice?
Stay off the meds. Work on building bone density naturally. Eat 6 prunes every day to help slow down bone loss. Get at least 30 grams of protein at every meal.
Make sure your taking collagen peptides every single day.
Stay off the meds. Work on building bone density naturally. Eat 6 prunes every day to help slow down bone loss. Get at least 30 grams of protein at every meal.
Make sure your taking collagen peptides every single day.
In particular, please take note of guideline #1 quoted here .
1. Be careful about giving out medical advice
- Sharing your own experience is fine, but don't tell other members what they should do.
- Experiences and information shared by members on the Mayo Clinic Connect are not a substitute for professional medical advice, diagnosis or treatment.
- Never disregard professional medical advice or delay in seeking it because of something you have read on the community.
I, a 79-yr old Indian American woman, am about to complete my Tymlos treatment and had bllod work done before meeting my Endo.
- My basic metabolic panel #s are normal.
- CTX is 321
- P1NP is 49.
After joining the Mayo Osteo group, I learned about CTX and PiNP markers for OP. I don't have any CTX and P1NP values to compare with. For these stand-alone #s, any guidance on what these #s mean?
Thanks
@rajmayo22, hi.
From your numbers I would guess that you are having good response to Tymlos. If you are completing a second year, depending on your dxa results, you might want to ask your provider about taking Tymlos for a third year.
Bone markers are in the toss currently. Protocolled use of bone markers is for determining whether a medication is effective. That would require before medication use testing, and, usually, during medication use testing. It is becoming less fringe to use one set of markers in comparison with each other. This video at 9 minutes and 22 seconds, from an impressive (but very expensive) md, outlines a math method for determining the ratio between P1NP which measures a bone fragment indicating bone acquisition against a CTX protein fragment indicating bone loss.
These bone markers (especially CTX) fluctuate during the day, after eating, with exercise, with the use of biotin and collagen.
With the use of PTH therapies P1NP is said to rise faster than CTX, until the osteoblasts stimulate a rise in osteoclasts and the CTX catches up.
@rajmayo22, hi.
From your numbers I would guess that you are having good response to Tymlos. If you are completing a second year, depending on your dxa results, you might want to ask your provider about taking Tymlos for a third year.
Bone markers are in the toss currently. Protocolled use of bone markers is for determining whether a medication is effective. That would require before medication use testing, and, usually, during medication use testing. It is becoming less fringe to use one set of markers in comparison with each other. This video at 9 minutes and 22 seconds, from an impressive (but very expensive) md, outlines a math method for determining the ratio between P1NP which measures a bone fragment indicating bone acquisition against a CTX protein fragment indicating bone loss.
These bone markers (especially CTX) fluctuate during the day, after eating, with exercise, with the use of biotin and collagen.
With the use of PTH therapies P1NP is said to rise faster than CTX, until the osteoblasts stimulate a rise in osteoclasts and the CTX catches up.
My CTX and P1np #s were after overnight fasting and no Ca and VitD 72 hours prior to drawing of blood. I stopped taking Biotin before beginning Tymlos two years ago and never taken supplemental collagen.
I am mostly vegetarian with reliance on lentils, some greens and veggies, nuts and fruits, and dairy and occasional eggs and chicken as protein source. (Excuse me for my sharing of diet info. here.)
I will watch the video before my Endo appt. and contact Radius Labs to see if they any guidance on 3rd year of treatment.
Just curious about your fractures in your feet. I have been struggling with 2 metatarsal fractures for 26 months that are very slow to heal. I have taken a variety of OP meds. I have had OP since I was 35. I am now 56. I have done pretty well until 2 years ago with my foot. My P1NP is < 10 and CTX is 76. Did your fractures finally heal? What bones? What finally helped? Thanks!
Dear Lisanne,
I am very sorry to hear of your two decade long journey with OP. I assume you have a very skilled and knowledgable doctor to guide you. ( if not, find one - mayo clinic or bone specialty group ) My OP is not primary - and it is excerabated by metabolic and genetic issues. My foot fratures ( over the course of 6 years) in both feet included metatarsal, calcanesous, talus, cubiod and cuneform bones - so all the bones of the feet were weakened. That is not charariteristic of OP - however improving bone quality will help and has helped them. Thank God. I used a Exogen machine, mind body visualization, to help healing and was on tymlos ( still on tymlos). Your situation with early onset OP is unque so get the best care you can. I suggest reading Great Bones by Keith McCormick ( he still does counseling if you are intersted) so you get began it understand bone metabolics. As offered in above post the below two articles are helpful in understadning bone markers so you can ask questiosn about your current levels ( and make sure you took the test correctly at the right time and being off certain supplements.)
I send you psoitive energy for your healing and postive outlook for a healthy and happy future. https://www.mayocliniclabs.com/api/sitecore/TestCatalog/DownloadTestCatalog?testId=83175
. https://food4healthybones.com/wp-content/uploads/2022/10/The-Importance-Of-Bone-Markers-With-Dr.-Keith-McCormick.pdf
Dear Lisanne,
I am very sorry to hear of your two decade long journey with OP. I assume you have a very skilled and knowledgable doctor to guide you. ( if not, find one - mayo clinic or bone specialty group ) My OP is not primary - and it is excerabated by metabolic and genetic issues. My foot fratures ( over the course of 6 years) in both feet included metatarsal, calcanesous, talus, cubiod and cuneform bones - so all the bones of the feet were weakened. That is not charariteristic of OP - however improving bone quality will help and has helped them. Thank God. I used a Exogen machine, mind body visualization, to help healing and was on tymlos ( still on tymlos). Your situation with early onset OP is unque so get the best care you can. I suggest reading Great Bones by Keith McCormick ( he still does counseling if you are intersted) so you get began it understand bone metabolics. As offered in above post the below two articles are helpful in understadning bone markers so you can ask questiosn about your current levels ( and make sure you took the test correctly at the right time and being off certain supplements.)
I send you psoitive energy for your healing and postive outlook for a healthy and happy future. https://www.mayocliniclabs.com/api/sitecore/TestCatalog/DownloadTestCatalog?testId=83175
. https://food4healthybones.com/wp-content/uploads/2022/10/The-Importance-Of-Bone-Markers-With-Dr.-Keith-McCormick.pdf
Thank you for your reply. I have talked with Dr. McCormick twice. I do have his book and have read it. I did do the tests correctly in terms of timing, fasting and no supplements. I also do see a doctor at Mayo Clinic since last November. I did have an endocrinologist locally that was knowledgeable. I also have been using the Exogen bone stimulator. I keep wondering if there is some other underlying cause to the low bone turnover. I was recently prescribed Tymlos but I am not sure I really want to start another med. I have taken this in 2018 for 15 months and then again from August 2022 through February 2023 when I switched to Evenity for 5 months which I discontinued due to side effects. I have taken HRT since 2018 when I hit menopause. If it is not too personal, I am curious about the genetic and metabolic issues that you have faced. I also discovered I have MGUS in 2023 because of some bloodwork I had done looking for any autoimmune disease. Thank you for your help and I certainly wish you a healthy and pain free future.
My CTX and P1np #s were after overnight fasting and no Ca and VitD 72 hours prior to drawing of blood. I stopped taking Biotin before beginning Tymlos two years ago and never taken supplemental collagen.
I am mostly vegetarian with reliance on lentils, some greens and veggies, nuts and fruits, and dairy and occasional eggs and chicken as protein source. (Excuse me for my sharing of diet info. here.)
I will watch the video before my Endo appt. and contact Radius Labs to see if they any guidance on 3rd year of treatment.
rajmayo22, my pleasure.
We talk about diet all the time on connect.
Since our exchange will file under your question, it doesn't divert the original posters question. Your question, though, may go unnoticed by other responders. If you start a new message on your profile page, you'll likely receive more response. I'm definitely not the expert on bone markers on this site.
While I am trusting the bone markers in my own treatment, I want the CTX number close to the P1NP number. I place high value on osteoclasts. I struggle with what might be the "best" ratio. I'd like to know the speed of one osteoclast compared to the speed of one osteoblast. And I want to know their relative weight and size.
Thanks for revealing your Bone Marker numbers. Every piece of information helps.
I have read that Asian identity gives a person an added burden in osteoporosis. Some thinking is that there is a genetic inclination toward lactose intolerance. I realize (as an Indian American) you might not be Asian.
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I, a 79-yr old Indian American woman, am about to complete my Tymlos treatment and had bllod work done before meeting my Endo.
- My basic metabolic panel #s are normal.
- CTX is 321
- P1NP is 49.
After joining the Mayo Osteo group, I learned about CTX and PiNP markers for OP. I don't have any CTX and P1NP values to compare with. For these stand-alone #s, any guidance on what these #s mean?
Thanks
maybe this will help: https://www.mayocliniclabs.com/api/sitecore/TestCatalog/DownloadTestCatalog?testId=83175
https://food4healthybones.com/wp-content/uploads/2022/10/The-Importance-Of-Bone-Markers-With-Dr.-Keith-McCormick.pdf
-
Like -
Helpful -
Hug
1 ReactionJust curious about your fractures in your feet. I have been struggling with 2 metatarsal fractures for 26 months that are very slow to heal. I have taken a variety of OP meds. I have had OP since I was 35. I am now 56. I have done pretty well until 2 years ago with my foot. My P1NP is < 10 and CTX is 76. Did your fractures finally heal? What bones? What finally helped? Thanks!
Stay off the meds. Work on building bone density naturally. Eat 6 prunes every day to help slow down bone loss. Get at least 30 grams of protein at every meal.
Make sure your taking collagen peptides every single day.
-
Like -
Helpful -
Hug
1 ReactionHi @whilloba and welcome to Mayo Clinic Connect. As a new member, you may not be aware of the Community Guidelines. I encourage you to read them in full here https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/
In particular, please take note of guideline #1 quoted here .
1. Be careful about giving out medical advice
- Sharing your own experience is fine, but don't tell other members what they should do.
- Experiences and information shared by members on the Mayo Clinic Connect are not a substitute for professional medical advice, diagnosis or treatment.
- Never disregard professional medical advice or delay in seeking it because of something you have read on the community.
@whilloba, do you have osteoporosis?
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Helpful -
Hug
2 Reactions@rajmayo22, hi.
From your numbers I would guess that you are having good response to Tymlos. If you are completing a second year, depending on your dxa results, you might want to ask your provider about taking Tymlos for a third year.
Bone markers are in the toss currently. Protocolled use of bone markers is for determining whether a medication is effective. That would require before medication use testing, and, usually, during medication use testing. It is becoming less fringe to use one set of markers in comparison with each other. This video at 9 minutes and 22 seconds, from an impressive (but very expensive) md, outlines a math method for determining the ratio between P1NP which measures a bone fragment indicating bone acquisition against a CTX protein fragment indicating bone loss.
These bone markers (especially CTX) fluctuate during the day, after eating, with exercise, with the use of biotin and collagen.
With the use of PTH therapies P1NP is said to rise faster than CTX, until the osteoblasts stimulate a rise in osteoclasts and the CTX catches up.
-
Like -
Helpful -
Hug
1 ReactionThank you so much for your feedback.
My CTX and P1np #s were after overnight fasting and no Ca and VitD 72 hours prior to drawing of blood. I stopped taking Biotin before beginning Tymlos two years ago and never taken supplemental collagen.
I am mostly vegetarian with reliance on lentils, some greens and veggies, nuts and fruits, and dairy and occasional eggs and chicken as protein source. (Excuse me for my sharing of diet info. here.)
I will watch the video before my Endo appt. and contact Radius Labs to see if they any guidance on 3rd year of treatment.
Dear Lisanne,
I am very sorry to hear of your two decade long journey with OP. I assume you have a very skilled and knowledgable doctor to guide you. ( if not, find one - mayo clinic or bone specialty group ) My OP is not primary - and it is excerabated by metabolic and genetic issues. My foot fratures ( over the course of 6 years) in both feet included metatarsal, calcanesous, talus, cubiod and cuneform bones - so all the bones of the feet were weakened. That is not charariteristic of OP - however improving bone quality will help and has helped them. Thank God. I used a Exogen machine, mind body visualization, to help healing and was on tymlos ( still on tymlos). Your situation with early onset OP is unque so get the best care you can. I suggest reading Great Bones by Keith McCormick ( he still does counseling if you are intersted) so you get began it understand bone metabolics. As offered in above post the below two articles are helpful in understadning bone markers so you can ask questiosn about your current levels ( and make sure you took the test correctly at the right time and being off certain supplements.)
I send you psoitive energy for your healing and postive outlook for a healthy and happy future.
https://www.mayocliniclabs.com/api/sitecore/TestCatalog/DownloadTestCatalog?testId=83175
.
https://food4healthybones.com/wp-content/uploads/2022/10/The-Importance-Of-Bone-Markers-With-Dr.-Keith-McCormick.pdf
Thank you for your reply. I have talked with Dr. McCormick twice. I do have his book and have read it. I did do the tests correctly in terms of timing, fasting and no supplements. I also do see a doctor at Mayo Clinic since last November. I did have an endocrinologist locally that was knowledgeable. I also have been using the Exogen bone stimulator. I keep wondering if there is some other underlying cause to the low bone turnover. I was recently prescribed Tymlos but I am not sure I really want to start another med. I have taken this in 2018 for 15 months and then again from August 2022 through February 2023 when I switched to Evenity for 5 months which I discontinued due to side effects. I have taken HRT since 2018 when I hit menopause. If it is not too personal, I am curious about the genetic and metabolic issues that you have faced. I also discovered I have MGUS in 2023 because of some bloodwork I had done looking for any autoimmune disease. Thank you for your help and I certainly wish you a healthy and pain free future.
rajmayo22, my pleasure.
We talk about diet all the time on connect.
Since our exchange will file under your question, it doesn't divert the original posters question. Your question, though, may go unnoticed by other responders. If you start a new message on your profile page, you'll likely receive more response. I'm definitely not the expert on bone markers on this site.
While I am trusting the bone markers in my own treatment, I want the CTX number close to the P1NP number. I place high value on osteoclasts. I struggle with what might be the "best" ratio. I'd like to know the speed of one osteoclast compared to the speed of one osteoblast. And I want to know their relative weight and size.
Thanks for revealing your Bone Marker numbers. Every piece of information helps.
I have read that Asian identity gives a person an added burden in osteoporosis. Some thinking is that there is a genetic inclination toward lactose intolerance. I realize (as an Indian American) you might not be Asian.
There isn't data on the third year of Tymlos because the black box limit of two years has only recently (too lazy to look it up) been lifted. Radius Labs and your endo may be thinking that there remains a limit of two years. https://www.drugdiscoverytrends.com/fda-approves-removal-of-boxed-warning-from-label-for-osteoporosis-drug-tymlos/
Post back with your dxa improvement and any information about the third year, if you like.
Best wishes