1. < Osteoporosis & Bone Health

Initial blood tests to ask for ?

Posted by alexxa @alexxa, Sep 16, 2023

Hello...
I just had a dexa indicating osteoporosis, and will discuss soon with my PCP. I had a CBC done earlier this summer. I have seen CTX as an important test. I am wondering if I should ask for that on my discussion visit, or anything else, for that matter. Endo initial visit is not for a few months.

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windyshores | @windyshores | Feb 16 6:30pm
In reply to @mayblin "It's interesting that there are certain % of non-responders (in terms of btm) with different bisphosphonate...." + (show)
@mayblin

It's interesting that there are certain % of non-responders (in terms of btm) with different bisphosphonate. Dr. P Miller who does a lot of anabolic therapy states that he had a few pateint who were non responders (in terms of P1NP), who ended up with good dexa results after all! Maybe you belong to the latter.

I wish I have a set of baseline markers, too bad too late...

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My results on Tymlos have been great but my P1NP did not go up much. Ditto with Evenity so far. CTX did go down some. Markers don't match DEXA!

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1 reply
cpd54 | @cpd54 | Feb 17 6:24am
In reply to @babs10 "Hi Everyone, I asked my endocrinologist to please order the CTX and P1NP blood tests to..." + (show)
@babs10

Hi Everyone,

I asked my endocrinologist to please order the CTX and P1NP blood tests to get a baseline before starting Forteo (which he did). Soon thereafter, I read on this site (love this site) that the tests aren't always covered by Medicare. I called Medicare and they said they will be covered if the MD considers them "medically necessary."

I followed up and he wrote back:
"I generally don't order these tests because I don't think they generally change how I am treating you. I do think they are reasonable to do however and likely would be covered by insurance. The question is, will the results change our management? I don't think so, which is why I don't usually order them." (Isn't the whole point of the tests to be able to gauge the success and make changes if the meds aren't working, but I digress).

I followed up with: "Thank you. Especially for the first year of treatment I want to have a baseline and then a follow up to see how I am doing on the meds. Would you be willing to deem them medically necessary under these circumstances?"

He wrote back: "I can and have ordered these tests but it's not up to me if they are covered by your insurance."

Anyway, would you take your chances? I don't know how much the tests cost but I'm already going to be paying $1920 per month for the Forteo so anything sounds hard, but I do want the baseline. All input and suggestions welcome.

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@babs10 You can order the CTX and P1NP yourself through Life Extension. https://www.lifeextension.com/search#q=CTX&t=coveo4A2453FD and https://www.lifeextension.com/lab-testing/itemlc140850/intact-n-terminal-propeptide-of-type-1-procollagen.
The cost seems reasonable but of course you have to pay for it yourself. You go to a LabCorp collection site for the blood draw and I don’t know the cost of that. I had one GP tell me he wouldn’t order the test because he doesn’t know how to interpret the results. If the other GP I use won’t order them this is what I’m going to order them through Life Extension.

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babs10 | @babs10 | Feb 17 6:31am

Wow, that's amazing and I had no idea. I'll find out how much it costs to get that done. I've never heard of Life Extension. Thank you so much.

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mayblin | @mayblin | Feb 17 2:09pm
In reply to @windyshores "My results on Tymlos have been great but my P1NP did not go up much. Ditto..." + (show)
@windyshores

My results on Tymlos have been great but my P1NP did not go up much. Ditto with Evenity so far. CTX did go down some. Markers don't match DEXA!

Jump to this post

Your Dexa results are gold! Your doctors must be baffled seeing your btms vs Dexa... no wonder a lot of docs don't do them. Depending how often they get tested, the cost adds up quickly.

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1 reply
Michael Lavacot | @michaellavacot | Feb 19 2:02pm

Hi Alexxa,
While I'm sure your endocrinologist will have there own list of standard tests for osteoporosis, there are a handful of tests that you want to make sure are included to check for secondary causes of osteoporosis. Attached is a picture of those tests. I have a presentation that outlines why you want to get some of these tests if you want to watch it. It's the "New to Osteoporosis" presentation listed here youtube.com/@michaellavacot. Start at the 2:21 mark through 16:44 mark. There is an exhaustive list of tests in the backup of the presentation but not all are necessary.
Good luck on your journey!
Mike
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1 reply
alexxa | @alexxa | Feb 19 2:10pm
In reply to @michaellavacot "Hi Alexxa, While I'm sure your endocrinologist will have there own list of standard tests for..." + (show)
@michaellavacot

Hi Alexxa,
While I'm sure your endocrinologist will have there own list of standard tests for osteoporosis, there are a handful of tests that you want to make sure are included to check for secondary causes of osteoporosis. Attached is a picture of those tests. I have a presentation that outlines why you want to get some of these tests if you want to watch it. It's the "New to Osteoporosis" presentation listed here youtube.com/@michaellavacot. Start at the 2:21 mark through 16:44 mark. There is an exhaustive list of tests in the backup of the presentation but not all are necessary.
Good luck on your journey!
Mike

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Thank you, Mike, I've not been reading/commenting here for a while but I did go ahead and get all of the above blood tests done, although I've not managed those 24 hour tests yet.
I appreciate your following up! Now I am at the point of following up and trying to catch up on all the osteoporosis information I put aside for a bit, because it just became too much to absorb for me for a while!
A.

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Michael Lavacot | @michaellavacot | Feb 19 2:21pm

I get it, we have all been there. I highly recommend you watch the full one hour of the "New to Osteoporosis" presentation I posted at youtube.com/@michaellavacot. I put it together after 18 months of research on all of the latest information from the top osteoporosis doctors from around the world. I try to make it so the average person can understand and get their feet planted on the ground so they can have a productive discussion with their doctors. You will feel much better, I promise 🙂
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judyso | @judyso | Feb 19 10:03pm
In reply to @mayblin "It's interesting that there are certain % of non-responders (in terms of btm) with different bisphosphonate...." + (show)
@mayblin

It's interesting that there are certain % of non-responders (in terms of btm) with different bisphosphonate. Dr. P Miller who does a lot of anabolic therapy states that he had a few pateint who were non responders (in terms of P1NP), who ended up with good dexa results after all! Maybe you belong to the latter.

I wish I have a set of baseline markers, too bad too late...

Jump to this post

mayblin, do you have contact info. for Dr. P Miller? Where does he/she practice?

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mayblin | @mayblin | Feb 19 10:17pm

I only know he is in Colorado, Dr. Paul Miller. Watched his presentation on ytube and also someone recommended him once, that's how I remembered his name. It seems he does a lot of anabolic therapy. Wish you luck!

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1 reply
windyshores | @windyshores | Feb 20 6:17am
In reply to @mayblin "Your Dexa results are gold! Your doctors must be baffled seeing your btms vs Dexa... no..." + (show)
@mayblin

Your Dexa results are gold! Your doctors must be baffled seeing your btms vs Dexa... no wonder a lot of docs don't do them. Depending how often they get tested, the cost adds up quickly.

Jump to this post

So timing of blood test bone markers is important. Not only should CTX be done early in the morning, fasting, but these tests should be done when treatment is peaking. For Evenity, the P1NP needs to be done on day 14, according to my doc, when the drug (and side effects) are peaking. I would actually do day 12. My P1NP was lower than expected after my first injections but the test was done at the end of the first month of treatment.

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