jbfm@jbfm
CTX numbers aren't useful in isolation.
The number represents actual particles that are left in your serum when osteoclasts break down bone.
Since those osteoclastic cells are attracted to fissures and weakness in the bone and rush in to clear those areas so that the cell that rebuild bone don't rebuild over a weakened structure, we should be happy with elevated numbers especially as we age. But we also need (to see P1NP bone marker evidence of) bone restoration.
njhornung's response is an important reminder to be wary of simplistic answers. The normals for women 50 to 59 years of age are so high because they are losing the most bone of anyone on the chart. Normal, but its like measuring the "normal number of fractures." "Normal," in this example. isn't advantageous or heathy.
Your CTX is likely high after two years of Forteo. And your P!NP is keeping up with it, giving you good strong bone. After stopping Forteo both numbers will drop. After a month you may be in an excellent position to take Tymlos or retake Forteo. A second application of Forteo is said to be as "robust" as the first. Initally Forteo causes a large jump in the number of bone building cells. Later in treatment the osteoclasts catch up and then we are advantaged by a pause in treatment.
A rather separate point: when we exercise with weight or participate in any impact activity, running, jumping. CTX rises as a functional adaptation to stress. The spicules in our bones actually realign according to our activities by breaking down and rebuilding. Lastly, if you have a broken bone CTX levels can be off the charts, because they are the first step of repair.
You are on the best track. Well, we're on the same track. You're a year ahead.
To further oversimplify, it seems to me that the ratio of CTX to P1NP might be of value if the goal is to maintain a steady state of bone tear-down and bone building. Using the values for middle aged women where the only growth may be in width but not height, CTX seems to be roughly 8 times the value of P1NP, using only the lowest values or the highest for the calculation. If osteoporosis is being treated, obviously, the steady state would not apply
My baseline ratio is 4:1. Am I building more bone than losing it (diagnosed with osteoporosis) or are we putting too much emphasis on these values? The answer may be that we should use them simply as a guide or to monitor changes- further decline or the effect of treatment.
jbfm@jbfm
CTX numbers aren't useful in isolation.
The number represents actual particles that are left in your serum when osteoclasts break down bone.
Since those osteoclastic cells are attracted to fissures and weakness in the bone and rush in to clear those areas so that the cell that rebuild bone don't rebuild over a weakened structure, we should be happy with elevated numbers especially as we age. But we also need (to see P1NP bone marker evidence of) bone restoration.
njhornung's response is an important reminder to be wary of simplistic answers. The normals for women 50 to 59 years of age are so high because they are losing the most bone of anyone on the chart. Normal, but its like measuring the "normal number of fractures." "Normal," in this example. isn't advantageous or heathy.
Your CTX is likely high after two years of Forteo. And your P!NP is keeping up with it, giving you good strong bone. After stopping Forteo both numbers will drop. After a month you may be in an excellent position to take Tymlos or retake Forteo. A second application of Forteo is said to be as "robust" as the first. Initally Forteo causes a large jump in the number of bone building cells. Later in treatment the osteoclasts catch up and then we are advantaged by a pause in treatment.
A rather separate point: when we exercise with weight or participate in any impact activity, running, jumping. CTX rises as a functional adaptation to stress. The spicules in our bones actually realign according to our activities by breaking down and rebuilding. Lastly, if you have a broken bone CTX levels can be off the charts, because they are the first step of repair.
You are on the best track. Well, we're on the same track. You're a year ahead.
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?
To further oversimplify, it seems to me that the ratio of CTX to P1NP might be of value if the goal is to maintain a steady state of bone tear-down and bone building. Using the values for middle aged women where the only growth may be in width but not height, CTX seems to be roughly 8 times the value of P1NP, using only the lowest values or the highest for the calculation. If osteoporosis is being treated, obviously, the steady state would not apply
My baseline ratio is 4:1. Am I building more bone than losing it (diagnosed with osteoporosis) or are we putting too much emphasis on these values? The answer may be that we should use them simply as a guide or to monitor changes- further decline or the effect of treatment.
I agree.
The establishment value of CTX is only within the context of prior and post bisphosphonate use. And then it is only used to indicate whether the medication is "working." Even then, it is questionable because we tend to change up diet and exercise and when we get the diagnosis. And if there a fracture is undetected, mild or in the spicule ( I must have strained a muscle), phase all bets are off.
There is a lot of noise about the over-prescribed osteoporosis patient. I often suspect that I'm one of those taking high-powered drugs who never would have fractured anyway.
It seems to me that the goal should be to "maintain a steady state of bone tear-down and bone building" But I don't know how (or if) you can use the ratio of CTX and P1NP.
Thanks for the insight about the growth in width being reflected by an 8 to 1 ratio.
If osteoporosis is being treated wouldn't the steady state be best, but with an increase in the number of couplets of osteoblasts and osteoclasts at least in regard to strength. It can't be just the ratio.
Norma, I've enjoyed this.rather more than a person should. 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?
CTX at 476 within the context of your bone density and six years of no meds, I'd guess that you have luck . If you were starting the sometimes slow process of vertebral fracture your CTX would be higher. Thats provided that you had an early morning, fasting blood draw.
It is wonderful that you ordered your own test. A P1NP at the same draw would give us more information to guess your status. Testing 2 months into medication treatment would give you an idea if the meds were working.
At -4.0 my advice would be to begin Tymlos as soon as you can. If there aren't other reasons opposing HRT, I'd advise a low dose estrodial patch. Having already seen the endocrinologist, you should be able to make a request for the prescription by phone or message (today). Meanwhile be careful not to fall, don't do heavy lifting and avoid exercises that twist the spine. Be gentle with yourself as if you were fragile.
You should question advice from anyone. I don't see a choice here. But I'm not any expert.
The process for Tymlos or Forteo insurance approval can take a bit of time. Ask your endocrinologist for a free sample pen. And ask that she expedite the process.
And keep us posted remembering that we respect any choice that you make without judgement. Bless your bones.
CTX at 476 within the context of your bone density and six years of no meds, I'd guess that you have luck . If you were starting the sometimes slow process of vertebral fracture your CTX would be higher. Thats provided that you had an early morning, fasting blood draw.
It is wonderful that you ordered your own test. A P1NP at the same draw would give us more information to guess your status. Testing 2 months into medication treatment would give you an idea if the meds were working.
At -4.0 my advice would be to begin Tymlos as soon as you can. If there aren't other reasons opposing HRT, I'd advise a low dose estrodial patch. Having already seen the endocrinologist, you should be able to make a request for the prescription by phone or message (today). Meanwhile be careful not to fall, don't do heavy lifting and avoid exercises that twist the spine. Be gentle with yourself as if you were fragile.
You should question advice from anyone. I don't see a choice here. But I'm not any expert.
The process for Tymlos or Forteo insurance approval can take a bit of time. Ask your endocrinologist for a free sample pen. And ask that she expedite the process.
And keep us posted remembering that we respect any choice that you make without judgement. Bless your bones.
Thank you very much.
I am traveling to Italy for 6 weeks in a few days and will certainly be careful. I have a scheduled appointment with my endocrinologist to repeat bloodwork and begin Reclast. As I need a tooth extraction in July, I won't be beginning Reclast nor do I want to. So I'll have to ask her about Forteo and Tymlos at my appointment. Unfortunately I will still need a maintenance drug so I'll be back to the same dilemma in a year or two!
Thank you for your interest, advice, concern and support!
CTX at 476 within the context of your bone density and six years of no meds, I'd guess that you have luck . If you were starting the sometimes slow process of vertebral fracture your CTX would be higher. Thats provided that you had an early morning, fasting blood draw.
It is wonderful that you ordered your own test. A P1NP at the same draw would give us more information to guess your status. Testing 2 months into medication treatment would give you an idea if the meds were working.
At -4.0 my advice would be to begin Tymlos as soon as you can. If there aren't other reasons opposing HRT, I'd advise a low dose estrodial patch. Having already seen the endocrinologist, you should be able to make a request for the prescription by phone or message (today). Meanwhile be careful not to fall, don't do heavy lifting and avoid exercises that twist the spine. Be gentle with yourself as if you were fragile.
You should question advice from anyone. I don't see a choice here. But I'm not any expert.
The process for Tymlos or Forteo insurance approval can take a bit of time. Ask your endocrinologist for a free sample pen. And ask that she expedite the process.
And keep us posted remembering that we respect any choice that you make without judgement. Bless your bones.
I’m not quite as low, but getting closer. I may start Tymlos and hope I can tolerate it and continue to exercise a lot. I do not want to take any of the follow up drugs. My endocrinologist suggested that I might just be able to stay on Tymlos for life. He’s not in favor of six months on and six months off. I’ve had previous soft tissue sarcoma, so scared to stay on, but Tymlos/Forteo seem like the only drugs I would consider. Any help here on long term use?
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Here are the standard ranges from Mayo Clinic https://www.mayocliniclabs.com/test-catalog/overview/83175#Clinical-and-Interpretive
In general, you want lower numbers like 150 to 400. They can be much lower while on most osteoporosis drugs (except Tymlos and Forteo).
Females
< 5 years: 347-1508 pg/mL
5-9 years: 383-1556 pg/mL
10-15 years: 311-1776 pg/mL
16-17 years: 146-1266 pg/mL
18-29 years: 148-967 pg/mL
30-39 years: 150-635 pg/mL
40-49 years: 131-670 pg/mL
50-59 years: 183-1060 pg/mL
60-69 years: 171-970 pg/mL
> or =70 years: 152-858 pg/mL
Premenopausal: 136-689 pg/mL
Postmenopausal: 177-1015 pg/mL
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6 ReactionsThe problem I have with these numbers is that they encompass the normal values found in the general population. They do not represent ideal values,
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5 Reactionsjbfm@jbfm
CTX numbers aren't useful in isolation.
The number represents actual particles that are left in your serum when osteoclasts break down bone.
Since those osteoclastic cells are attracted to fissures and weakness in the bone and rush in to clear those areas so that the cell that rebuild bone don't rebuild over a weakened structure, we should be happy with elevated numbers especially as we age. But we also need (to see P1NP bone marker evidence of) bone restoration.
njhornung's response is an important reminder to be wary of simplistic answers. The normals for women 50 to 59 years of age are so high because they are losing the most bone of anyone on the chart. Normal, but its like measuring the "normal number of fractures." "Normal," in this example. isn't advantageous or heathy.
Your CTX is likely high after two years of Forteo. And your P!NP is keeping up with it, giving you good strong bone. After stopping Forteo both numbers will drop. After a month you may be in an excellent position to take Tymlos or retake Forteo. A second application of Forteo is said to be as "robust" as the first. Initally Forteo causes a large jump in the number of bone building cells. Later in treatment the osteoclasts catch up and then we are advantaged by a pause in treatment.
A rather separate point: when we exercise with weight or participate in any impact activity, running, jumping. CTX rises as a functional adaptation to stress. The spicules in our bones actually realign according to our activities by breaking down and rebuilding. Lastly, if you have a broken bone CTX levels can be off the charts, because they are the first step of repair.
You are on the best track. Well, we're on the same track. You're a year ahead.
-
Like -
Helpful -
Hug
6 ReactionsTo further oversimplify, it seems to me that the ratio of CTX to P1NP might be of value if the goal is to maintain a steady state of bone tear-down and bone building. Using the values for middle aged women where the only growth may be in width but not height, CTX seems to be roughly 8 times the value of P1NP, using only the lowest values or the highest for the calculation. If osteoporosis is being treated, obviously, the steady state would not apply
CTX: 150-635 pg/ml (30-39 years)
P1NP: 19-83 mcg/L (Adult female premenopausal)
My baseline ratio is 4:1. Am I building more bone than losing it (diagnosed with osteoporosis) or are we putting too much emphasis on these values? The answer may be that we should use them simply as a guide or to monitor changes- further decline or the effect of treatment.
-
Like -
Helpful -
Hug
3 ReactionsThanks so much for the information!
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Helpful -
Hug
2 ReactionsWow. 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?
-
Like -
Helpful -
Hug
1 ReactionI agree.
The establishment value of CTX is only within the context of prior and post bisphosphonate use. And then it is only used to indicate whether the medication is "working." Even then, it is questionable because we tend to change up diet and exercise and when we get the diagnosis. And if there a fracture is undetected, mild or in the spicule ( I must have strained a muscle), phase all bets are off.
There is a lot of noise about the over-prescribed osteoporosis patient. I often suspect that I'm one of those taking high-powered drugs who never would have fractured anyway.
It seems to me that the goal should be to "maintain a steady state of bone tear-down and bone building" But I don't know how (or if) you can use the ratio of CTX and P1NP.
Thanks for the insight about the growth in width being reflected by an 8 to 1 ratio.
If osteoporosis is being treated wouldn't the steady state be best, but with an increase in the number of couplets of osteoblasts and osteoclasts at least in regard to strength. It can't be just the ratio.
Norma, I've enjoyed this.rather more than a person should. Thanks
-
Like -
Helpful -
Hug
1 ReactionCTX at 476 within the context of your bone density and six years of no meds, I'd guess that you have luck . If you were starting the sometimes slow process of vertebral fracture your CTX would be higher. Thats provided that you had an early morning, fasting blood draw.
It is wonderful that you ordered your own test. A P1NP at the same draw would give us more information to guess your status. Testing 2 months into medication treatment would give you an idea if the meds were working.
At -4.0 my advice would be to begin Tymlos as soon as you can. If there aren't other reasons opposing HRT, I'd advise a low dose estrodial patch. Having already seen the endocrinologist, you should be able to make a request for the prescription by phone or message (today). Meanwhile be careful not to fall, don't do heavy lifting and avoid exercises that twist the spine. Be gentle with yourself as if you were fragile.
You should question advice from anyone. I don't see a choice here. But I'm not any expert.
The process for Tymlos or Forteo insurance approval can take a bit of time. Ask your endocrinologist for a free sample pen. And ask that she expedite the process.
And keep us posted remembering that we respect any choice that you make without judgement. Bless your bones.
-
Like -
Helpful -
Hug
2 ReactionsThank you very much.
I am traveling to Italy for 6 weeks in a few days and will certainly be careful. I have a scheduled appointment with my endocrinologist to repeat bloodwork and begin Reclast. As I need a tooth extraction in July, I won't be beginning Reclast nor do I want to. So I'll have to ask her about Forteo and Tymlos at my appointment. Unfortunately I will still need a maintenance drug so I'll be back to the same dilemma in a year or two!
Thank you for your interest, advice, concern and support!
-
Like -
Helpful -
Hug
2 ReactionsI’m not quite as low, but getting closer. I may start Tymlos and hope I can tolerate it and continue to exercise a lot. I do not want to take any of the follow up drugs. My endocrinologist suggested that I might just be able to stay on Tymlos for life. He’s not in favor of six months on and six months off. I’ve had previous soft tissue sarcoma, so scared to stay on, but Tymlos/Forteo seem like the only drugs I would consider. Any help here on long term use?
-
Like -
Helpful -
Hug
2 Reactions