Blood Marker Testing

Posted by babs10 @babs10, May 17 2:19pm

Hi Everyone,

I had P1NP and CTX serum tests. I expected the numbers would be wonky somehow, but both are in the normal range. Are the numbers only useful as baselines for the sake of comparison once taking medication?

Thanks.

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@gently

@babs10
the normal range is so broad that I haven't seen any numbers in the literature where an osteoporosis patient was out of range. The scales are 20 years old and were developed by the assay labs and adopted by medical providers.

From what I've observed (from my own dxas and from reading) women lose the most estrogen and bone in the first 5 years of menopause. Bone markers would be of value then. There should be a separate range for women from 50 to 55. Speculating; when you first lose bone your bone markers rise. After bone loss your markers will settle back down because you are not building bone. Where bone is lost blood supply and nerve supply are also lost. Without intervention your body hasn't a way to rebuild the bone. Your serum levels of markers reflect reduced rebuilding.
Before Forteo, the only way to medically address osteoporosis was by reducing osteoclasts. Bisphosphonates were the medication we used. Osteoclasts were maligned, undeserveably. Lower really isn't better. More commonly. now, bone specialists are saying that it is best to raise osteoblasts than to supress osteoclasts, especially in osteoporotic women. Reduction in bone formation is the primary reason for age related bone loss. Turnover is said to increase by 50 to 100% within the first years of menopause because of the loss of estrogen. It's higher in a desperate attempt to save those bones.
So babs, your bone markers look perfect.
The bone markers will be of benefit to measure the effect of medications. With Forteo or Tymlos markers are best taken at 2 month not 3 as is common.
Best use for bone markers has not been sufficiently explored.

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Great post @gentlemanjoe

took a cancer med that reduced estrogen below detectable levels (it addressed estrogen from adrenals post-menopause). I had an abrupt drop of 10% in bone density the first year then it stabilized. I think the same thing happened at menopause.

From what my doctor has explained, bone markers kind of oversimplify things but a comparison with baseline seems very helpful and the suggestion of timing made by @gently is a good one. I have kidney disease and read that can also affect CTX and bone specific alkaline phosphatase may be useful.

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@babs10

@mayblin, Interesting. Thanks so much for laying all of that out. Dr. Miller shrugged and said that it could be microstructure of my hip and this may be the way I was born. I was surprised to get a call from the infusion center without having another discussion with him. I don't think I am a candidate for Evenity (not covered by medicare by the way, but neither is Tymlos) because I was diagnosed with a blood clot in my 20s and I have high blood pressure (controlled by low dose meds). It's not from prolonged sitting, that I know. What would be an example of an abnormal mechanical stress?

I'm off to read T-score discordance between hip and lumbar spine: risk factors and clinical implications and hope I can decipher it. I have trouble understanding these studies! Opening commentary: "T-score discordance is common in osteoporosis diagnosis and leads to problems for clinicians formulating treatment plans." Great.

Just read a bit. How do you know if this is a minor discordance vs. major? TIA

Thanks again.

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Would you please share the source of your information about Medicare not covering Evenity or Tymlos? This is the first time I have heard this. Thanx.

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@babs10

@mayblin, Interesting. Thanks so much for laying all of that out. Dr. Miller shrugged and said that it could be microstructure of my hip and this may be the way I was born. I was surprised to get a call from the infusion center without having another discussion with him. I don't think I am a candidate for Evenity (not covered by medicare by the way, but neither is Tymlos) because I was diagnosed with a blood clot in my 20s and I have high blood pressure (controlled by low dose meds). It's not from prolonged sitting, that I know. What would be an example of an abnormal mechanical stress?

I'm off to read T-score discordance between hip and lumbar spine: risk factors and clinical implications and hope I can decipher it. I have trouble understanding these studies! Opening commentary: "T-score discordance is common in osteoporosis diagnosis and leads to problems for clinicians formulating treatment plans." Great.

Just read a bit. How do you know if this is a minor discordance vs. major? TIA

Thanks again.

Jump to this post

babs10,
Evenity is covered by traditional Medicare if you have the injections in an infusion center.
I just had my 12th Evenity injections and every penny of the $5,000+ cost was paid by Medicare.
When I first started the drug, both the endocrinologist and the rheumatologist called the infusion center that very day to schedule it. The infusion center called me before I got home from the doctors office.
I am shocked at the price tag on Evenity and would love to see the breakdown of where the money goes.
As far as results, I have a dexa tomorrow and will report back.

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Medicare Part B covered Evenity for me if given in the doctor's office (80% coverage). Tymlos was also covered but by my Medicare Advantage plan, since it is administered at home, and was slightly less expensive. (For the first 18 months I had Radius Assist and Tymlos was free.)

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@rjd

Would you please share the source of your information about Medicare not covering Evenity or Tymlos? This is the first time I have heard this. Thanx.

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@rjd, When teriparatide was prescribed, the pharmacy called me to make sure I understood the cost. I didn't!!! so I called Medicare and was referred to my supplemental. My supplemental referred me to my Part D prescription plan and I was told $1927/month was the copay. I am not eligible for any financial assistance. I saw a second MD who prescribed Tymlos which is even more expensive and not included in my Part D formulary. I saw a third MD and he prescribed Evenity. I haven't made any decisions about medication and was surprised that he contacted the infusion center without further conversation - I was waiting for the results of the CTX and P1NP. I called the infusion center on Friday and they told me they couldn't tell me if Evenity was covered unless I had an appointment so I made an appointment and hope to hear back from them this week. I don't think I can take Evenity due to a blood clot DX in my 20s, but wanted to play this out pending further conversation with the doctor.

I forgot that Evenity is different (thanks @susanfalcon52) b/c it is given at an infusion center so I'm sure I'm wrong about that one and have to wonder why the my Part D prescription plan and the infusion center didn't tell me that. Based on what @windyshores wrote, I will call Medicare and double check on Tymlos. Nothing about this diagnosis is easy.

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@susanfalcon52

babs10,
Evenity is covered by traditional Medicare if you have the injections in an infusion center.
I just had my 12th Evenity injections and every penny of the $5,000+ cost was paid by Medicare.
When I first started the drug, both the endocrinologist and the rheumatologist called the infusion center that very day to schedule it. The infusion center called me before I got home from the doctors office.
I am shocked at the price tag on Evenity and would love to see the breakdown of where the money goes.
As far as results, I have a dexa tomorrow and will report back.

Jump to this post

@susanfalcon52, fingers crossed for you! Yes, report back!

REPLY
@gently

@babs10
the normal range is so broad that I haven't seen any numbers in the literature where an osteoporosis patient was out of range. The scales are 20 years old and were developed by the assay labs and adopted by medical providers.

From what I've observed (from my own dxas and from reading) women lose the most estrogen and bone in the first 5 years of menopause. Bone markers would be of value then. There should be a separate range for women from 50 to 55. Speculating; when you first lose bone your bone markers rise. After bone loss your markers will settle back down because you are not building bone. Where bone is lost blood supply and nerve supply are also lost. Without intervention your body hasn't a way to rebuild the bone. Your serum levels of markers reflect reduced rebuilding.
Before Forteo, the only way to medically address osteoporosis was by reducing osteoclasts. Bisphosphonates were the medication we used. Osteoclasts were maligned, undeserveably. Lower really isn't better. More commonly. now, bone specialists are saying that it is best to raise osteoblasts than to supress osteoclasts, especially in osteoporotic women. Reduction in bone formation is the primary reason for age related bone loss. Turnover is said to increase by 50 to 100% within the first years of menopause because of the loss of estrogen. It's higher in a desperate attempt to save those bones.
So babs, your bone markers look perfect.
The bone markers will be of benefit to measure the effect of medications. With Forteo or Tymlos markers are best taken at 2 month not 3 as is common.
Best use for bone markers has not been sufficiently explored.

Jump to this post

@gently, You wrote, "Your serum levels of markers reflect reduced rebuilding."

Would you please say a little more about this? I'm not clear on how you can tell. Thanks.

REPLY

hi babs,
You can see the extent of remodeling because bone markers measure specific fragments released in the process. CTX is a fragment of type 1 collagen released in the bloodstream during resorption when the osteoclasts release an acid on bone. P1NP measures fragments cleaved from type 1 collagen when the osteoblasts fits the collagen into the pit letf by the osteoclasts.

I should have written your serum levels of markers reflect less rebuilding than higher number of balanced CTX/P1NP would.
The way we commonly look at the numbers, your's look perfect. The osteoclast/osteoblast couplet looks balanced. And the numbers are at the lower end of normal rather than the higher number.
In perfect balance you aren't removing more bone than you are replacing. And your BMD ( though not your bones) would be stable or (wouldn't change). We need higher balanced numbers to increase BMD.
(Unless,
we are taking bisphosphonates or Prolia. The antiresporptives completely alter the balance. Eliminating the remodeling process, increasing BMD by collecting older bone preventing renewal.) CTX/P1NP numbers are low when there isn't as much bone turnover.
Research hasn't revealed a perfect balance. The numbers aren't used for diagnosing osteoporosis. The are used separately to determine response to medications.
I'm leave this link because I like the video
https://www.youtube.com/watch?v=Cd0YT-OV97c

REPLY
@gently

hi babs,
You can see the extent of remodeling because bone markers measure specific fragments released in the process. CTX is a fragment of type 1 collagen released in the bloodstream during resorption when the osteoclasts release an acid on bone. P1NP measures fragments cleaved from type 1 collagen when the osteoblasts fits the collagen into the pit letf by the osteoclasts.

I should have written your serum levels of markers reflect less rebuilding than higher number of balanced CTX/P1NP would.
The way we commonly look at the numbers, your's look perfect. The osteoclast/osteoblast couplet looks balanced. And the numbers are at the lower end of normal rather than the higher number.
In perfect balance you aren't removing more bone than you are replacing. And your BMD ( though not your bones) would be stable or (wouldn't change). We need higher balanced numbers to increase BMD.
(Unless,
we are taking bisphosphonates or Prolia. The antiresporptives completely alter the balance. Eliminating the remodeling process, increasing BMD by collecting older bone preventing renewal.) CTX/P1NP numbers are low when there isn't as much bone turnover.
Research hasn't revealed a perfect balance. The numbers aren't used for diagnosing osteoporosis. The are used separately to determine response to medications.
I'm leave this link because I like the video
https://www.youtube.com/watch?v=Cd0YT-OV97c

Jump to this post

@gently, I am starting to think I have a learning (processing) disability or maybe it's my anxiety kicking in. You said, "The way we commonly look at the numbers, mine look perfect, and then, "I should have written your serum levels of markers reflect less rebuilding than higher number of balanced CTX/P1NP would." Can you help me understand that? Message me privately if you prefer.

I liked the video, too. Thanks for attaching it. I haven't tried natto and it doesn't look too appealing. haha. Would these food suggestons make a difference once you have the diagnosis or are they preventative? I thought it was interesting that they called heel drops preventative and not for people with osteoporosis b/c they can cause fractures. Onero (Belinda Beck) includes them as part of her program.

There is so much to learn. Thank you very much for sharing your vast understanding. I have a lot of catching up to do!

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Babs, I'm certain that the disability is in my expression. I hope you don't give up until you're thinking--Why didn't she just say that to begin with.

If your bone density were that of the (non existent) 30 year old that our densities are compared to 324pg/mL with in the range of 104- 1008pg/mL is low normal 60mcg/L P1NP is mid normal in range of 16 to 96 mcg/L So your rebuilding is keeping up with the breaking down. You have effective remodeling.

The markers say that you are maintaining the bone density you now have. If your bone density is low you are maintaining that low bone density.

If your CTX were 1008pg/mL and your P1NP 16mcg/L, you'd be losing bone density according to the bone markers.
The way medical practitioners use the markers is to determine patient compliance with taking their medications and to determine if a medication is working. The markers aren't used to diagnose osteoporosis. They have been used to determine which medication should be prescribed. After Forteo was approved it was thought that the bisphosphonates were best if CTX was high. Now thinking is shifting toward anabolics first.
My private opinion is that you can't regain very much bone loss without pharmaceuticals. There are wonderful ways to try and some people seem to be successful. It is a slower process than meds and the risk of a meanwhile fracture is why many of us take medications.
"Vast understanding" gave me a good laugh. Whatever my understanding, I have even less experience. It's best to question anything I write.

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