CTX Testing Question

Posted by beanieone @beanieone, Jul 18 1:28pm

All,

I asked my new doc about having a CTX done since I am entering the post-Evenity (and Tymlos) phase of my treatment plan. Since then, I’ve had a battery of blood tests mostly because I think the doc is trying to find a reason as to why I have OP (blood issues??) and to make sure it’s safe for me to have another Reclast infusion.

So, here’s the question, oh knowledgeable and faithful friends . . . what would the blood testing be called for the CTX or what would I look for in the results - I can’t find anything on the patient portal and the once completed, the names of the bloodwork I’ve completed disappear. In the results, I don’t see any kind of “value” that looks like one I should have from CTX. Is there a possibility that CTX testing takes more than a few days to “incubate”?

I messaged the doc and quickly received a response from a member of his team who said all bloodwork was complete. She didn’t mention the CTX and I don’t want to continue to message her. If nothing else, I can wait for the infusion center to call and I can perhaps ask them. And, once I have a date for the infusion, I can message the doc again to ask about having the CTX done.

Please help! Thanks!

Cheers!

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Try PROCOLLAGEN TYPE I INTACT N TERMINAL PROPEPTIDE

It is a separate test from CBC or Metabolic panel.

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@normahorn

Try PROCOLLAGEN TYPE I INTACT N TERMINAL PROPEPTIDE

It is a separate test from CBC or Metabolic panel.

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Thanks for your speedy reply, @normahorn! I don't remember seeing that description on any of the labs. I'll have to message the doc again to see if perhaps he forgot to order the CTX. And, I had a metabolic panel in the recent past, but oddly enough, he didn't order a CBC (pretend there's a confused emoji here).

Cheers!

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@beanieone

Thanks for your speedy reply, @normahorn! I don't remember seeing that description on any of the labs. I'll have to message the doc again to see if perhaps he forgot to order the CTX. And, I had a metabolic panel in the recent past, but oddly enough, he didn't order a CBC (pretend there's a confused emoji here).

Cheers!

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@beanieone the test mentioned by @normahorn is actually the P1NP, another important bone marker that measures growth.

Here is the CTX: "Serum cross-linked C-telopeptide of type I collagen (CTX) is a marker of osteoclast activity and is used to assess the level of bone resorption."

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beanieone, CTX is sometimes called beta crosslaps or C teleopeptide. Both CTx and P1NP are sent out to specialty labs. They can take up to a week longer to get results. Last summer there was a shortage of the reagent for CTx. The wait was almost three months.
Even so, the labs may not have been ordered.
I especially like the pretend emoj.

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@gently

beanieone, CTX is sometimes called beta crosslaps or C teleopeptide. Both CTx and P1NP are sent out to specialty labs. They can take up to a week longer to get results. Last summer there was a shortage of the reagent for CTx. The wait was almost three months.
Even so, the labs may not have been ordered.
I especially like the pretend emoj.

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I waited two months for P1NP last year. The timing of these varies!

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Windyshores, three months is the expiration date for the serum draw, if it's frozen. And then they have to know to stir the sample throughly. Mine was close enough to three month to cause doubt. I hadn't heard about delays with P1NP. Usually they just refridgerate. I guess we have to wonder about all our tests and their interpretations.

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Sorry for my error. I should have copied this from the report: C TELOPEPTIDE (CTX).

For me, both results were reported 5 days after the blood draw.

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I am at UCHealth for Ucsd and they took one month to get mine done. It had to be shipped out of state. I might suggest if you are older like me that you write down or print out the things that are said here so you can talk to your doctor or your doctors team, honestly it’s all too confusing for me and there’s so much over the years that I have to rely on writing things down and remembering I’m gonna forget them! Also a 🤔 for me too! I appreciate everyone’s input here as it is help me get better care from overworked and neglectful doctors and office staff . I had a test lined up for this year’s DEXA on the same machine and location At imaging healthcare services who I like very much. I’ve used for 12 years however they didn’t offer the TBS test with it. I went back-and-forth with scheduling and it takes two months to get an appointment at UCSD and IHS so I kept having to cancel and remake appointments as I changed orders and new information just yesterday yesterday I switched back to UCHealth because it was only they who ordered the TBS test with the DEXA. I spoke to a really nice competent knowledgeable scheduler who told me it is no longer critical to use the same equipment and location at UCHealth. They have equipment that does not require previous deck says to have been done there. This was a tremendous relief, but now I just have to wait another two months to get the DEXA!

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Great idea @loriesco - I, too, began writing things down. Questions for the doc, answers from the doc, what tests were performed and when, except when I miss a crucial detail: Why did I have blood drawn four times in five days?! Sadly, the request disappears after the blood is drawn, never to be seen or heard from again, waaaah!

I was happy to have my post-med DEXA done on a new machine . . . new bones, new equipment ;). There's a good chance the old DEXA scanner was really old - six or seven have been recently replaced within my network. My new bones are considerably better than my old ones, and I'm happily using these numbers as my baseline for future testing.

Fingers crossed that your DEXA results are positive! Cheers!

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@beanieone

Great idea @loriesco - I, too, began writing things down. Questions for the doc, answers from the doc, what tests were performed and when, except when I miss a crucial detail: Why did I have blood drawn four times in five days?! Sadly, the request disappears after the blood is drawn, never to be seen or heard from again, waaaah!

I was happy to have my post-med DEXA done on a new machine . . . new bones, new equipment ;). There's a good chance the old DEXA scanner was really old - six or seven have been recently replaced within my network. My new bones are considerably better than my old ones, and I'm happily using these numbers as my baseline for future testing.

Fingers crossed that your DEXA results are positive! Cheers!

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In my medical system the request disappears after the service occurs but the test results are available online - with all my medical providers. One more point I’d like to make is that the DEXA aren’t perfect. I’ve had Diaz on the same equipment and increasingly better DEXA over the years but when I went in for surgery last summer, my cervical vertebrae C5 fell apart in the doctors hand. It was paper thin, none of us had a clue. So with all my joint replacements, the smaller joints that they can do the taxes on are not indicative of some of the other joint conditions in my body I don’t know what the answer is except for now I know not to feel , entirely secure about the DEXA readings. Good luck to you too!

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