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    Old 12-17-2007, 02:59 AM   #16
    PikaB
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    Re: Get your Vit d level tested

    I did a quick web search and found one hopeful article: Response to Teriparatide in Patients with Baseline 25-Hydroxyvitamin D Insufficiency or Sufficiency. The results of this study indicate that Forteo built just as much bone whether or not the patient had the recommended amounts of Vitamin D-25 in the blood.

     
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    Old 12-17-2007, 01:05 PM   #17
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    Re: Get your Vit d level tested

    Hi Pika: Thanks for the info, it's nice to know the Forteo is still working in spite of our D levels. How are you doing??

     
    Old 12-17-2007, 01:20 PM   #18
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    Re: Get your Vit d level tested (1,25D testing)

    Quote:
    Originally Posted by rbbb View Post
    DB,
    That is great that you actually got your 1,25D levels tested -- almost no one does that but it is much more important than checking regular 25,D levels and can tell you much more. Unfortunately a lot of labs and lab techs can do a poor job handling the sample for 1,25D causing it to degrade and give lower readings etc. Quest Labs is supposed to be the best and LabC shld be avoided since they don't care if the sample is frozen or not (it shld be).

    What 1,25D level did you get ???

    jrb
    Hi Jrb: Welcome to the board. Thanks for the info on labs... I normally use Quest and sometimes BioData. I have a dr that likes the D 1,25 test for some reason. I should know why he likes to test it, maybe you could help me an elaborate on it. I've had the 125 done 5 times in the last 15 months and my scores are all over the place. Initially I was at 81.7 and the last one done with the D 25 was 49.8. According to Quest the ref range is 25.1-66.1, but I've seen others where they list it at 15.9-55.6. I have slightly elevated calcium, so the dr has been trying to figure that out by running a bunch of tests, the last one was PTHrP, which was normal.

    Thanks for the info and joining us!!!

     
    Old 12-17-2007, 04:36 PM   #19
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    Re: Get your Vit d level tested (1,25D testing)

    Pika B- I need to look at the article. I have read at Mayo Clinic that vitamin d deficiency causes rickets in children with growing bone, and osteomalacia in adults. So, how could a vit d deficient status allow quality bone growth while on forteo. Did the article pose the question that while the bone growth was not inhibited that it may not be of a good quality or as good a quality as it may have been with adequate vit d level??

     
    Old 12-17-2007, 05:18 PM   #20
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    Re: Get your Vit d level tested

    Hi Osteo: Here's the article PikaB mentioned. You can also find it by typing in the entire title name he lists and it pulls up numerous other sources for the same study. I wondered the same thing, but this has been an issue with me for a long time but with my calcium levels. If my calcium level is elevated wouldn't it pull the calcium from the bone, into the blood, leaving the bone at higher risk for fracture, thus making the Forteo less effective, and according to my Min Met dr the answer was no. I still don't completely understand how elevated or low vitamin and minerals affect the remoldeling process, especially in the case of elevated levels, I understand your reasoning when the vitamin is low. Read it and see what you think.

    Pika-Hope you don't mind me stepping in



    [url]http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&uid=17911178&cmd=showde tailview&indexed=******[/url]

    Well it looks like you will have to type in the title of the article since the above link is truncated But the one I read is from PubMed-National Institute of Health

    Last edited by DesertBloom; 12-17-2007 at 05:52 PM.

     
    Old 12-17-2007, 07:09 PM   #21
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    Re: Get your Vit d level tested (1,25D testing)

    Quote:
    Originally Posted by osteoblast View Post
    ...Did the article pose the question that while the bone growth was not inhibited that it may not be of a good quality or as good a quality as it may have been with adequate vit d level??
    The abstract did state that the study does not exclude the possibility of differences in fracture outcome between the subgroups. So although the BMD was not affected by low D-25, it is unknown whether or not the fracture risk (bone quality) was affected.

     
    Old 12-18-2007, 10:31 AM   #22
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    Re: Get your Vit d level tested (1,25D testing)

    PikaB-Thank you for the follow up. I saw an expert in the osteo field, he is mostly involved in research, and he said that the flaw with the dexa is that it didn't test quality. He said bone quality testing is the next development in the diagnostic field and it isn't too far out that it would be available. I didn't ask the time frame. When thinking quality , I am sure it is multifactorial, but vit d seems to one of the critical components if not the most critical given that with rickets and osteomalacia vitamin d administration is the treatment. Of course , there could be other issues with rickets and osteomalacia- it wouldn't always be so simple in ,for example, cases where a person could not use the vitamin d that is taken in- celiac etc. What I don't understand is why forteo users are expected to have the 19%increase in d 1,25 and 19%decrease in d25. What is going on with the metabolism of vit d?

     
    Old 12-18-2007, 02:59 PM   #23
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    Re: Get your Vit d level tested (1,25D testing)

    Quote:
    Originally Posted by osteoblast View Post
    What I don't understand is why forteo users are expected to have the 19%increase in d 1,25 and 19%decrease in d25. What is going on with the metabolism of vit d?
    Well, whatever is going on does not seem to affect bone quality negatively. In the Fracture Prevention Trial, the patients on Forteo only had about 1/3 as many fractures as the patients receiving the placebo.

     
    Old 12-18-2007, 07:37 PM   #24
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    Re: Get your Vit d level tested (1,25D testing)

    Quote:
    Originally Posted by osteoblast View Post
    PikaB-Thank you for the follow up. I saw an expert in the osteo field, he is mostly involved in research, and he said that the flaw with the dexa is that it didn't test quality. He said bone quality testing is the next development in the diagnostic field and it isn't too far out that it would be available. I didn't ask the time frame. When thinking quality , I am sure it is multifactorial, but vit d seems to one of the critical components if not the most critical given that with rickets and osteomalacia vitamin d administration is the treatment. Of course , there could be other issues with rickets and osteomalacia- it wouldn't always be so simple in ,for example, cases where a person could not use the vitamin d that is taken in- celiac etc. What I don't understand is why forteo users are expected to have the 19%increase in d 1,25 and 19%decrease in d25. What is going on with the metabolism of vit d?

    Hi Osteo: This really won't help your situation much but there are some forms of ostemalacia and rickets that are vitamin D resistant.

    I was thinking about this, and wondered if you read the article that Pika posted and also if you'd thought of phrasing your search query differently? I was looking this up myself and haven't been all that satisfied with the results so far, but I will continue to look. But it occured to me that since our PTH levels effect calcium, d 25, d 125, and phosphorous the same way, could you try rewording you search query by substituting the word Forteo for parathyroid gland. Since Forteo has only been around for 5 years there aren't as many studies on it as there are on the effects of parathyroid disorders (high/low readings/adenomas etc) and cal, D, and phosphorous levels. You might be able to find out more if you knew how the parathyroid gland does the exact same thing that Forteo does. Just a thought. But I still feel better knowing that the patients in that trial who started off (baseline) with low D 25 didn't have any decrease in remodeling or suffered any increases in fx's after 19 months with out of wack D. Of course we wouldn't know the quality of the bone that was being made with low D, but evidently it was good enough to prevent fx's, and increase bmd. We still have to treat these problems, in some cases, but I'm glad they "even did" a study about the effects of low D25 with the coadministration of Forteo, who knew the medical community was even thinking about this! Thanks again Pika...good job finding it~~

    I'll let you know if I finding an explanation, and I've been looking, but all I can find is what I mentioned above about the metabolism effects of the PTH gland on those vits and minerals. So even if you weren't taking Forteo we still know this can happen via a malfunctioning PTH gland.

    An example of a query off the top of my head might be "metabolism of vitamin D and Calcium with Forteo" and then replace Forteo with "the Parathyroid gland," putting that query in your search engine instead. I'm sure you can come up with a better query than that, I can't think anymore tonight bad neck/headache pain.

    Talk to you later to give you the latest news, not all that interesting though about the vit D 25

    Last edited by DesertBloom; 12-18-2007 at 07:48 PM.

     
    Old 12-19-2007, 10:03 AM   #25
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    Re: Get your Vit d level tested (1,25D testing)

    DesertBloom-I hope today you are doing much better! Despite your headache and pain,your thoughts on the query were dead on. One particular article at the National Academy of Sciences regarding Unraveling the Enigma of Vitamin D is a treasure trove. It reconfirms some info on vit d that I have seen at other sources .There is a discussion of the metabolism of d that I think is helpful, yet to me confusing. And the article does cover that pesky topic of calcium and its relationship to d and parathyroid. Now having said that , I cannot say I understand what is said.Have you seen this article? It also specifically mentions the reduction of dietary calcium and how that effects serum calcium ,pth and vit d.

    Yes, I looked at the abstract of the article that pika b found.When there I looked around and saw articles regarding raloxifene and teriparatide, raloxifene and hrt, among the topics. When looking at these articles, I feel somewhat a fish out of water. The sciences were not my area of study and these things are quite difficult and sometimes seemingly impossible for me to grasp . I intuit that there is alot there that it would help me to know. Especially regarding the next step in treatment. Have you read the articles there regarding raloxifene as a follow up to teriparatide? Also the article with combined treatment of raloxifene and hrt?

    Last edited by osteoblast; 12-19-2007 at 10:08 AM.

     
    Old 12-19-2007, 01:14 PM   #26
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    Re: Get your Vit d level tested

    Hi Osteo: I'm feeling a little better today because I went to PT which always helps the stiffness and pain. I haven't read the articles from the National Academy of Sciences but I'll try to look at it tomorrow.

    Don't worry about not understanding it all, because I have the same problem. Sometimes it helps to break it up, and substitute words or phrases for more familiar language as long as it means the same thing. It's sort of hard to explain how I do this, but it's similar to using a thesaurus for words except they would be medical terminology.

    I'm familiar with the antiresorptive/anabolic theory, and have read a lot on it. The problem with it is I can usually find as many pro articles as con using top resources and or medical facilities. When I started Forteo I was on Actonel, as you know, and my Endo told me I had to stay on both, which I did for about a month, or he said I could switch from Actonel to Evista (Raloxifene) instead, because it was less expensive. At that point I was sent to the mineral metabolism dr at llu, and she told me to stop the Actonel and NOT take it with the Forteo because of the blunting effect. I felt really stupid at that point because she wanted to know why I was doing that, and I explained my Endo told me to. Anyway, she said that she wouldn't expect him to know the complexities of mineral metabolism, and stop the Actonel. She concluded that I could go on either Evista or Actonel "after" the Forteo was over. I posted an article about a year ago on this, and I'll see if I can find it. I don't know what to tell you on this, since it goes against what I was told by my dr, and what I feel is right. However having said that, I'm doing the same thing anyway with the low dose hrt/forteo which is combining a antiresorptive with an anabolic. I guess the difference is I feel the hrt is necessary, and may not hurt the forteo, but taking fosamax (alendronate) with forteo isn't something that I would do because the Actonel had too many side effects for me. I'm still healing very slowing from the tooth extractions, and wondering if it's a side effect from the Actonel, but I guess I'll never know. I'm not one who thinks that ONJ is extremely prevalent, but I know it does exist in some cases, and I don't like the idea of having that drug in my system for 10+ years.

    This is all very confusing to me as well, and I would like to know more about the D/Calcium issue. My Endo decided that I shouldn't go on high dose D, for several reasons, one is it could raise my calcium even further, and the other is that he feels D 125 is more important than 25. My 125 level is normal, so he thinks that is more important since it's the biologically active form of D. I can't say I agree with him on that, but until I can talk to the mineral metabolism doc, I'll continue on my current regime of OTC D.

    I'll get back to you after I read the articles you mentioned thanks for telling me about them.

    Last edited by DesertBloom; 12-19-2007 at 01:48 PM.

     
    Old 12-22-2007, 05:43 PM   #27
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    Re: Get your Vit d level tested (1,25D testing)

    You are incorrect. Dihydroxyvitamin D is tightly hormonally regulated and does not change significantly in response to vitamin D deficiency. 1,25(OH)2D should only be ordered in rare cases to diagnose the cause hyper- or hypocalcemia of unknown origin. For vitamin D sufficiency, you only need the 25OHD. Unfortunately, most physicians learned in med school that "1,25(OH)2D is the active form of the hormone", which it is, but that doesn't mean it's the best biomarker for vitamin D deficiency. <removed> 1,25D is the active form. <removed> 25OHD is the best indicator of vitamin D status. Get it over 30 or even better 40 or 50 ng/mL.

    Last edited by mod-anon; 12-22-2007 at 10:32 PM. Reason: peer sharing only

     
    Old 12-22-2007, 05:46 PM   #28
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    Re: Get your Vit d level tested

    You have to try *very* hard to overdose on vitamin D. There are a handful of cases in the literature, usually from incorrectly formulated supplements or mistakes in milk fortification. But the 2000IU/day upper limit that the USA has is way too low. Experts in the field believe that the upper limit for safety is closer to 10000IU/day.

     
    Old 12-22-2007, 05:57 PM   #29
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    Re: Get your Vit d level tested

    umass-welcome!What you are saying squares with what I have read. Can you tell my why vid d 1,25 would become elevated?Why it would go up significantly over base line?And, could you answer the nagging question what is the relationship between vit d 1,25 and d25?????If a person had a mid range 25oh and an elevated 1,25 what would be the questions that should be asked?

     
    Old 12-22-2007, 06:00 PM   #30
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    Re: Get your Vit d level tested

    Hi umass2ucr: I'm not quite sure who you are talking to but if it was me, I have hypercalcemia, of unknown origin. I don't agree with my Endo on his approach to resolving my low D25, which is to continue at 1000 IU a day of d2/d3, but I have a Mineral Metabolism dr who will be checking in with me on this issue and will hopefully give me further and more accurate info for treatment. I've had hypercalcemia for 2 years, and have had all the tests you can think of for that and none of them explains my calcium levels or my recent (1 only) low D 25.

    If you could inlighten me on this issue on hypercalcemia which occured "prior" to starting Forteo, that would be wonderful!!!

    Last edited by DesertBloom; 12-22-2007 at 06:04 PM.

     
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