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osteoblast 02-26-2007 07:12 PM

ntx telopeptide test
 
DesertBloom-you seem to be the resident expert on this topic. Last week I had a follow up ntx ( just briefly after the first) along with other tests as well. I've got low vitamin d level which we are working on and slightly elevated serum calcium. The dr. is going to monitor the calcium, but thinks for now the elevation is likely forteo related but could be evolving hyperpara. I see from reading old posts that you have been around the block on this as well and that you were off forteo for awhile. At this time the dr. told me to lower my supplemental calcium to approx. 975. (previously at 1200supplemental and 300 dietary-for total 1500). Everything to be re-checked in 3 months. My system may not be as reactive to forteo because of the above. :confused: I tried to look at the medscape article that you referenced about the ntx test but it said you need to register. Did you register? Anyway, I know you're awaiting your new test results and I hope you do get great results. Say the reference range is something like 19-63, do you know what type of elevated level shows good forteo response?
I really appreciate your input. If anyone else has information on this please do share. Thanks all.

DesertBloom 02-27-2007 10:38 AM

Re: ntx telopeptide test
 
Hi Osteoblast: I have a new reference range for you from OsteoMark (5-65) so I would think that an elevation above 65 would show an increase in bone markers, as a result of forteo.

On the Medscape article, you *do* have to register to read it, but it's free.

Sorry to hear about the calcium level, but I'm curious, is your PTH elevated as well. No one had ever figured out my slightly elevated ionized (only) cal level, and it was elevated before I started forteo and remained elevated while off of it then it returned to normal. Now it's elevated again while on it. My PTH has always been normal, so they don't suspect hyperparathyroid.

I'm not taking *any* supp cal, which has a few drs confused but my mineral metabolism dr feels it's the way to go... I did read that lowering or intermittently stopping cal when serum cal is elevated is the correct action. I think I read that at NIH.

I'm still waiting to get the *order* for my NTx in the mail so I haven't had the test yet. I would imagine it will take some time to get the actual results. The dr doesn't trust the lab to get it via fax so is mailing it. Then I don't see her again for another mo.

I hope they figure out your calcium situation, did they test this at Mayo? Maybe they can figure it out, I haven't had much luck on it. I don't think that your cal would effect the NTx test much, at least it didn't in my case.

I'm on HRT now since the last NTx, and am wondering how that will effect the result. HRT is an antiresorptive which would lower NTx and Forteo is an anabolic which would raise NTx, so we'll see what happens and I'll get the dr to explain it.

osteoblast 02-28-2007 03:53 PM

Re: ntx telopeptide test
 
DesertBloom- thank you for your response. Yes, most recent lab tests were done at Mayo in Rochester. The dr. orders kits to be sent to me (24 hour urine container with preservative , blood specimen vials, local lab instructions re measuring urine-throwing out most and returning just a small container, blood taking and centrifuge instructions)-then all is put in mayo's shipping containers and returned to them.

My pth has on various testing continued to be in mid- range. The dr. seems focused on the slightly elevated calcium but as she is not a talker, there could as well be other aspects that concern her. Believe me-I try to ask the questions to understand what it going on . She answers my immediate question but that's it. So then her answer usually after research leads me to other questions. She is not the type of dr. who just offers up an explanation to teach you what is going on. She gives only the minimal and it seems inadequate to me. In fact, if I had not found this website- and particularly your most knowledgeable info. I don't believe I would have requested further lab testing and there would be no follow up until next visit after approx. twelve months.

Did your doctor explain why not taking calcium supplements would be the right thing in your slightly elevated calcium situation?

Do your doctors educate you? I know you have an inquiring mind and that you are very adept at mining the net for answers to your questions , but do your doctors try to explain things to you ? I wonder if I just have unrealistic expectations?

In your e-mail you brought up other things that I want to follow up on and just haven't yet had the time..I should have the time this weekend. I want to go to the medscape site , nih and look at osteomark again. I believe I saw the reference ranges for the ntx telopeptide test at osteomark...the range I saw was for pre-menopausal women. I am post-meno.

I am surprised to learn that you have started hrt and state that it is an anti-resorptive. I recall much said here about not blunting anabolic effect of forteo by combining anti-resorptive.

Also given the reference range for ntx telopeptide that you stated ,19-63, do you know what doctors expect when on forteo?

Thanks again!

DesertBloom 03-01-2007 05:36 PM

Re: ntx telopeptide test
 
Hi Osteoblast... It sure would be nice to be able to get to the Mayo Clinic. My mother used to go there for different reasons, and had a couple of surgeries there as well. She was from that area of the country and always trusted the drs there the most. Hopefully they can figure out the cal problem.

Each time my cal was elevated the first thing they would check is my pth level and thyroid and they were always normal so the dr feels that my parathyroid/thyroid gland is working properly and isn't the cause of the cal level. I've had many tests for this cal level, but the dr thinks adding supplemental cal is not a good idea. The only explanation she ever gives me is that if I were to take additional cal beyond what I get in my diet, could be setting me up for problems down the road like, stroke, kidney stones etc.

I haven't always had drs that explained or talked a lot, so in the last few years I've look for this type of dr. With my mineral metabolism dr I just lucked out. She is a professor, research lab co director, and spends most of her time in the lab, so I think she just likes to talk and teach as well. She's not one of those drs that rushes you or limits your questions, and she will answer anything I ask as long as she has an answer, sometimes she has to say I don't know. She thinks I'm one of those rare people who has a slightly elevated cal level to begin with, but doesn't want to mess with it unless she has too.

As far as the estrogen goes, I've only been on it for 2 weeks and am on the lowest dose they make taken every 3 days, due to severe estrogen deficiency. I'm having really bad night sweats that prevent getting much sleep, so that's why I wanted to take it. I'm post menopausal and have had trouble in the past with estrogen, so we'll see how long this lasts. My dr is completely against taking bisphosphonates with forteo, but doesn't have a problem with low dose estrogen, and truthfully I've never asked her about it being an antiresorptive and the possible conflicts with forteo, but I do know she doesn't feel there are any to be concerned about. This seems to be in direct conflict with what I've read, but I'm going to discuss it more with her once I tell her I'm on it. I'm really taking it out of desperation from lack of sleep. She won't let anyone of her patients consider strontium, bisphosphonates or serms while on forteo, and for some reason isn't worried about the low dose estrogen, as long as I watch my mamo's, paps and heart.

I don't think it's unrealistic to expect your dr to explain every detail of your concerns and health with you, but I also know some drs just don't have that type of personality. Luckily I have the type of insurance that will let me pick and choose who I see. But I do want to mention my OB-Gyn who is really maddening. When I see him, he asked a couple of questions then allows a couple of questions from me and then stands up and say's "Your done" and walks out the door, and I refuse to chase him done the hall. I always have to wait 2+ hours to see him and what I find mind boggling is that he has been rated in the top 3 drs for my county. Go figure. I've seen plenty of others as well that I absolutely hated, so I guess it's just the lesser of two evils.

I don't know what increases the drs want to see in regards to NTx and reference ranges, but I do recall reading somewhere that postmenopausal women should be around 30, but until I can confirm that I wouldn't take that as gospel.

I haven't always been as inquisitive as I am now, but maybe that has something to do with age (53) and many years spent in limbo on a lot of medical problems, where I had relatively No answers.

Just keep trying with your dr on explanations, and if you can get a new dr maybe that's an idea.

I'll let you know more about the hormone question with forteo when I talk to my dr, which hopefully will be some time this next week when she calls. As soon as I get the new NTx result I let you know about that as well.

Good Luck...

osteoblast 03-09-2007 02:31 PM

Re: ntx telopeptide test
 
Hi DesertBloom- hope you are doing well. From time to time I check this thread to see if you have any update. You might be interested in a comment made by my dr. I asked her about a local serum ionized cal test that was normal and my more recent elevated cal test at mayo that was not. The mayo report just says cal level it doesn't say what test. Her brief comment was that she doesn't use serum ionized cal test because it is unreliable. I believe you stated that it is your serum ionized cal that is high .
Also, in doing some research on vitamin d, I came across a comment about high serum ionized cal in people with a d deficiency. This was just in passing in a single article and maybe it is right or not-I don't know. But, I wondered if you had this tested recently. Your dr. seems totally on top of it all-but I thought I would just throw it out there. My vitamin d level really took a plunge from late summer to Feb. I know it's predictable- but this stuff is all new to me.

DesertBloom 03-09-2007 04:28 PM

Re: ntx telopeptide test
 
Hi Osteoblast: Thanks for the info on the ionized cal test, I'll mention it to my dr next month when I see her. I've never heard about it being unreliable, but I certainly wouldn't find it surprising if it is. For me it's *always* that test that is elevated and not the total cal, or urinary cal. My d levels are checked quite frequently, and they are always normal (all of them) except for one time my d3 was elevated, but then went back to normal. Do your drs know why yours is low? I also have the added benefit of sun exposure almost year round so I get it there as well.

I haven't had the N-telopeptide test yet, because I've been real busy with other tests MRI, EMG, CT scan and x-rays trying to find out what is wrong with my neck. I have the order for the 2 hr urine, but just haven't gotten around to it yet.

I just found out my most recent mamo showed a spot, so they may take me off the hormones. I had a feeling that this was going to be iffy taking low dose estrogen anyway. I talked to my dr about it effecting the bone markers and forteo, and her answer wasn't what I had hoped for since the hormones are helping with the night sweats.

Theorectically, hormones will act like bisphosphonates on bone therefore possibly diminishing the effect of forteo. When I originally asked about this, she said she had no problem with low dose estrogen and forteo, but she is now contradicting herself, or changing her mind.

According to her, there have been no definitive studies on the combo of estrogen and forteo, but since hormones are antiresorptives "it is possible" that they could blunt the forteo. In the end she left the decision to continue or not up to me, so it is confusing for me since I was finally getting some needed sleep. Now I have this additional issue with the mamo, which she doesn't know about, so I don't know for sure, but this is probably the end of my 1 month on estrogen. She also said it's also possible that it won't hurt the forteo, but theorectically it should--confusing huh!!!!

This is another reason why I've been stalling on the 2 hr urine test, since the estrogen will lower it and the forteo will raise it.:eek: :eek:

Anyway I hope you are doing well, and just thought I would let you know what's going on, and hope you find out what's going on with the d and calcium.

thyme2b 03-12-2007 06:41 PM

Re: ntx telopeptide test
 
Yikes:eek: , I'm on my second month of bio-identical HRT as well as taking Forteo. I sure hope it's not blunting the effect of it. I have so many different doctors with different ideas. It sure is frustrating.

In about a week, I go to the Cleveland Clinic to see Dr. Licata. I will ask him about this, since he has more experience with Forteo. I hope they don't suggest I go off the HRT, since it seems to be helping in some subtle ways. I feel happy and stable with it. I promised to report back once I had this appt, and plan to do that.

I've been scarce on this board lately, since I've been traveling, working an intense schedule (probably a total of 60 hrs/week) and my main health focus has been dealing with gluten sensitivity. I'll write more about that later, once I've gotten more figured out about it.

DesertBloom, your mineral metabolism doctor sounds interesting. I'd be interested in finding someone like that. Is that the official specialty?

DesertBloom 03-13-2007 07:25 AM

Re: ntx telopeptide test
 
Hi Thyme2b: Hey it's been a while... Please let me know what you find out about the hrt and forteo, since I'm not sure what to do. My problem is also having too many drs, plus they also change their minds which is really frustrating.

My dr. is a MD, PhD, MPH in Mineral Metabolism/Osteoporosis and works at an osteo research lab at Loma Linda Univ Hospital. Is that what you're asking?

I was recently checked for celiac, but haven't received the results yet.

Good Luck with dr Licata...

P.S. I'm feeling bad that I was the *one* that told you that my mineral met. dr originally said she had no problem with combining hrt and forteo, but now she has changed her mind so to speak if you want to look at it this way. Her final answer was it should theorectically diminish the forteo's benefits, and in the same breath, said it also *may not*, since it's a low dose, so who knows what to make of that!!! and there are no definitive test on combining the two. Good luck finding this out I'm really curious what dr Licata will say. This is an incredibly tough decision for me, since the hrt was helping some, but didn't relieve the night sweats completely, just some. I'm tired of having to dry my hair several times in the middle of the night and changing my clothes because after that it's really hard to go back to sleep. I desperately need sleep for so many reasons and also need the forteo to work since we can only take it for a short time. If you have any advice please let me know.

thyme2b 03-13-2007 07:13 PM

Re: ntx telopeptide test
 
[QUOTE=DesertBloom;2854700]Hi Thyme2b: Hey it's been a while... Please let me know what you find out about the hrt and forteo, since I'm not sure what to do. My problem is also having too many drs, plus they also change their minds which is really frustrating.

My dr. is a MD, PhD, MPH in Mineral Metabolism/Osteoporosis and works at an osteo research lab at Loma Linda Univ Hospital. Is that what you're asking?

I was recently checked for celiac, but haven't received the results yet.

Good Luck with dr Licata...

P.S. I'm feeling bad that I was the *one* that told you that my mineral met. dr originally said she had no problem with combining hrt and forteo, but now she has changed her mind so to speak if you want to look at it this way. Her final answer was it should theorectically diminish the forteo's benefits, and in the same breath, said it also *may not*, since it's a low dose, so who knows what to make of that!!! and there are no definitive test on combining the two. Good luck finding this out I'm really curious what dr Licata will say. This is an incredibly tough decision for me, since the hrt was helping some, but didn't relieve the night sweats completely, just some. I'm tired of having to dry my hair several times in the middle of the night and changing my clothes because after that it's really hard to go back to sleep. I desperately need sleep for so many reasons and also need the forteo to work since we can only take it for a short time. If you have any advice please let me know.[/QUOTE]Don't feel bad about this, because I also had a doctor who thought it was ok and thus prescribed it. In some ways it seems logical, since hormones are something we already have, at least the bioidentical ones are designed to be similar. I'll see what Dr. Licata says about it.

I'm going armed with a number of tests, including the NTx tests I've had done, the blood calcium levels, all my bone density tests going back some years and summarized in a spreadsheet, vitamin D levels. His office called me yesterday and left a message to ask if I had a bone density test. When I heard the message, I thought "Ha! You have no idea the number of tests I plan to bring!" I'm also going to bring a couple of the medical journal articles on gluten sensitivity and osteoporosis. I figure that there must be some genes for my family to have such a horrible history of it.

When you get the results of the serum gluten antigliadin, etc. tests, you may want to ask for a print out of the results. I've been reading a lot about this and have discovered that it's quite common to get a diagnosis of "no celiac" when in fact there is still a gluten sensitivity. That appears to be the case with me and only one of the blood measures is elevated, the IGa test, which they don't diagnose as celiac, but most likely indicates a gluten sensitivity/intolerance. My next step is to get the gene tests done, so I'm hoping that my insurance will agree to pay for it. I've discovered that the only lab that does all the genes for this is a particular lab and luckily they are nearby and take my insurance, but I still have to get those various authorizations.

FYI, there's a book called "Living Gluten Free for Dummies" that describes some of the testing and how the gluten sensitivity gets missed and what the tests means.

osteoblast 03-15-2007 06:30 PM

Re: ntx telopeptide test
 
DesertBloom Hi- I have been away from the computer for awhile . I want to let you know that I am hoping that the lab tests and other diagnostic work for your neck and mamo turn out ok. Sometimes it seems that there is just no end to it. It would be great if there could just be a time out. Like, I've got enough going on now -no more needed. But it doesn't work that way. Thankfully, it sounds like you've got a great medical team working to get things sorted out.
Have you made a decision about the estrogen? Have you looked at other dietary ways to deal with the night sweats? I'm 54 and didn't have much trouble with night sweats , but remember reading in Christiane Northrup's Menopause book( I think that was it) about dietary changes to help with hot flashes.

osteoblast 03-15-2007 06:39 PM

Re: ntx telopeptide test
 
Thyme2B- Hi, I have read your post regarding going to Cleveland Clinic and preparing your paperwork including ntx test results. I don't recall whether you have indicated if you are on any osteo meds now. DesertBloom and I are sharing info on forteo treatment and its effect on ntx telopeptide test results. In a continuing effort to get info on this topic, would you mind sharing regarding your current osteo treatment and the ntx test results?
Thanks so much.

osteoblast 03-15-2007 06:47 PM

Re: ntx telopeptide test
 
Thyme2B-ooops. I should have read back further-I was in too much of a hurry. I see that you did mention that you are on forteo. How long have you been on forteo and did you have ntx after taking forteo? I recently had an ntx test - results barely above range and the dr. said she didn't see much effect of the forteo. I am now on my 6th month. I am bummed out.

thyme2b 03-15-2007 08:42 PM

Re: ntx telopeptide test
 
[QUOTE=osteoblast;2861036]Thyme2B-ooops. I should have read back further-I was in too much of a hurry. I see that you did mention that you are on forteo. How long have you been on forteo and did you have ntx after taking forteo? I recently had an ntx test - results barely above range and the dr. said she didn't see much effect of the forteo. I am now on my 6th month. I am bummed out.[/QUOTE] I'm in about my 5th month of Forteo, I think. I have had 3 nTx tests. Here are the results:

First test - no treatment reading of 17
Second test - 6 months later after 2-3 months on Strontium reading of 21.5
Third test - 6 months later after 2 months on Forteo reading of 44

After the second reading, the doctor told me that the strontium wasn't working. This is because he read it backwards, thinking the higher number was bad and the bone was getting worse, when in fact it was improving. This is why I went on Forteo, since it seemed like the strontium wasn't working. When the next reading of 44 came back, he said it was getting even worse. I felt gloom and doom but then looked at a lot of material about testing with Forteo and found out that higher was better, not worse. I sent him the references for this and he said that I was right.

Long story short, perhaps I could have stayed on the strontium, but the Forteo seems to be working better. And I plan to go on bioidentical HRT and strontium after forteo, though I'm still trying out the BHRT now to see how it works, though may ditch it after visiting the Cleveland Clinic.

I will probably have a bone density scan in a couple of months and will let everyone know the results. That will give me more info about how this is working. Perhaps I'll ask for another NTx test soon.

I'm sorry to hear that yours doesn't seem to be showing results.

osteoblast 03-16-2007 09:33 AM

Re: ntx telopeptide test
 
Thyme2B-Thank you for responding regarding your ntx test results. Would you look at your lab results and see what the lab stated as the reference range. I had two ntx tests at different labs and the reference ranges were really different. I have to get more information about that. It must have been pretty weird for your dr. to flip flop on the meaning of the results-

thyme2b 03-16-2007 10:43 PM

Re: ntx telopeptide test
 
[QUOTE=osteoblast;2862139]It must have been pretty weird for your dr. to flip flop on the meaning of the results-[/QUOTE]Yes, I get used to this with doctors. I don't mean to sound vain, but I frequently seem to know more than they do about specific things related to me or to family members. I'm just good at using the internet and have always liked science. Plus, they have bunches of patients with various conditions and I just have myself and family members plus a few friends who ask me to look things up for them. I find errors that they make a lot, like this one about the test. So, I make it my business to look a lot of stuff up. Obviously they know lots and lots I don't know, but it is about many things that don't relate to me.

This doctor is new, so there's a lot he doesn't know. But he is willing to talk and listen and is into alternatives (but not dialogue). He's also smart. Today I talked him into a gene test for gluten sensitivity. He was reluctant, but I gave good reasons and had done my homework. He's a GP who works with alternatives, and it sometimes gets weird for me to get conflicting opinions from him and some of the other docs, but then I try to sort it out as best I can.

Sorry, this is a bit of a rant, but it does bother me to have these folks be so arrogant and then get stuff wrong so much of the time. I just needed to let off some steam about it.

Tomorrow I will find those tests (I had put the results in a spreadsheet but not the reference range for the NTx, though I'd done that for some other tests.


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