jangle Posted January 24, 2012 Report Share Posted January 24, 2012 Apparently there was a case study reported about someone who went into remission with calcitriol.http://www.mindcull....pplementation/#I can't read the whole abstract because of the annoying website, and I haven't been able to find this abstract anywhere else. I was wondering if anyone has tried calcitriol?EDIT: if you sign up for the website you can read the whole abstract.Apparently they found a woman whose HR increase was very dramatic. She had elevated NE and Epinephrine upon being tilted. They started her on calcitriol, she was in remission in about a month. Quote Link to comment Share on other sites More sharing options...
derekliz Posted January 24, 2012 Report Share Posted January 24, 2012 Here is the whole article....i need to read it too! 1-Alpha Hydroxylation Defect in Postural Orthostatic Tachycardia Syndrome (Type2); Remission with Calcitriol Supplementation.Author(s): AS Sacerdote, JO Mejia, G Bahtiyar, SA Chaudhari, Dept of Med, Woodhull Med Ctr, Brooklyn, NY; SUNY Downstate Med Ctr, Brooklyn, NY; New York Univ Sch of Med, New York, NYPOTS is an increase in heart rate (HR) from supine to upright position of > 30 beats/ minute (bpm) or heart rate >120 bpm with head up tilt. It's postulated that a mutation in exon 9 of the norepinephrine transporter gene Ala457Pro, might provide an explanation for POTS symptoms. 1- alpha hydroxylation defect is a feature of chronic renal failure and Vitamin D resistant rickets, while Vitamin D deficiency is reported in fibromyalgia, a frequent comorbidity of POTS. A 37 yr old female with a history of reactive hypoglycemia, NCAH, osteopenia, and fibromyalgia.After several months of palpitations, POTS ( type 2) was diagnosed by tilt table. Her HR reached 191 bpm at 60 degrees from horizontal. Investigation suggested increase in epinephrine (E) and norepinephrine(N) levels in response to tilt table. Her 25 -OH vitamin D3 level measured by RIA was 35 pg/ ml ( normal 9-54 pg/ml) while her 1, 25( OH)2 vitamin D3 level was 24pg/ml ( normal 30-67 pg/ml). Accordingly, she was started on calcitriol 0.25 mcg orally daily. At her next visit after 5 months, she reported remarkable improvement in her palpitations and had been working full time for the past 4 months. HR both seated and upright was 72 bpm. After 3 months, her 1, 25( OH)2 vitamin D3 level on calcitriol was 40 pg/ml. There is beta -1 receptor supersensitivity with decreased alpha- 1 receptor sensitivity in POTS, which explains why palpitation is a prominent symptom. De Novelli's study of Vitamin D deficiency reported that vitamin D deficient diet induces a decrease in pressor response to NE which explains the prominent supersensitivity to beta- 1 stimulation causing prominent palpitations. Also Brion's study reported that Vitamin D deficiency decreases the activity of enzyme PNMT ( Phenylethanolamine-N methyltransferase) which converts N to E, hence N is higher than E in Vitamin D deficiency. Conclusions: A. 1 -alpha hydroxylation defect causes decreased serum 1,25( OH)2 vitamin D3 level which might be associated with increase in PNMT activity causing increased N levels leading to development of POTS. B.It's also possible that mutation of gene Ala457Pro encoding for N transport is not fully expressed in the presence of calcitriol sufficiency and that its deletion is linked with the defect in 1- alpha hydroxylase transcription, mRNA translation, or post translation expression. We suggest that 1-alpha hydroxylation defects should be sought and treated with calcitriol, if present, in POTS patients.Date: Thursday, June 11, 2009 Session Info: POSTER SESSION: CLINICAL - Clinical Case Reports: Bone & Mineral Disorders in Adults & Children ( Quote Link to comment Share on other sites More sharing options...
derekliz Posted January 24, 2012 Report Share Posted January 24, 2012 I am having labwork tomorrow and sent this to my pcp (not who treats me for POTS) and asking her to check my levels...can't hurt!Going to email this to my POTS md and see what they say....very curious! My vitamin D has been on the low end of the rangeLiz Quote Link to comment Share on other sites More sharing options...
jangle Posted January 24, 2012 Author Report Share Posted January 24, 2012 Somehow I have a feeling this is going to help a lot of POTS patients. Quote Link to comment Share on other sites More sharing options...
derekliz Posted January 24, 2012 Report Share Posted January 24, 2012 My pcp read the article and ordered the vitamin d tests. I only saw the lab tech so O should have results in a few days. Will post the results...if i remember...lolLiz Quote Link to comment Share on other sites More sharing options...
jangle Posted January 24, 2012 Author Report Share Posted January 24, 2012 I'll also see if I can get my vitamin D levels checked. Make sure they're testing the 1, 25( OH)2 vitamin D3 levels because the other one will probably be normal. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 24, 2012 Report Share Posted January 24, 2012 Jangle,I had kind of read a similar study back in November, and polled people on their levels. You can look at the poll and read the link to the study here:http://forums.dinet.org/index.php?/topic/18572-how-low-is-your-vitamin-d-level/page__hl__vitamin__fromsearch__1When I read what the patient in your link above had, it was like a check-list for me: reactive hypoglycemia, NCAH, osteopenia, and fibromyalgia. I'm actually not sure I have the NCAH, but possible, as I do have a growth on each adrenal. I am supposed to be intensively getting my vit. D levels up, but I take it for a few doses and then skip a few weeks to let my intestines settle down. It kind of makes me constipated. I will take my next dose TODAY! Quote Link to comment Share on other sites More sharing options...
jangle Posted January 24, 2012 Author Report Share Posted January 24, 2012 Jangle,I had kind of read a similar study back in November, and polled people on their levels. You can look at the poll and read the link to the study here:http://forums.dinet....__fromsearch__1When I read what the patient in your link above had, it was like a check-list for me: reactive hypoglycemia, NCAH, osteopenia, and fibromyalgia. I'm actually not sure I have the NCAH, but possible, as I do have a growth on each adrenal. I am supposed to be intensively getting my vit. D levels up, but I take it for a few doses and then skip a few weeks to let my intestines settle down. It kind of makes me constipated. I will take my next dose TODAY!I think you have to take calcitriol, not all vitamin D is the same, calcitriol is the final "version" of vitamin D after your body has processed it. In this patient, she had normal pre-vitamin D levels, but abnormal "after processing" vitamin D levels. That's why I don't think vitamin D supplements and calcitriol are the same thing. Regardless, it seems like the people in your survey weren't able to get their levels much past 30. It seems like you need it at 40 to be well off. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 24, 2012 Report Share Posted January 24, 2012 Sorry, I'm confused! I was assuming when I looked up calcitriol and it said "man-made Vitamin D" that that's what my presciption vitamin D was(vit. D2). So it isn't? What exactly is it?If it's OTC vitamin D3, I'm out of luck. I don't handle that well at all. For some odd reason, I handle the D2 better. Quote Link to comment Share on other sites More sharing options...
derekliz Posted January 24, 2012 Report Share Posted January 24, 2012 I emailed my md the whole article so fingers crossed that she ordered the right one Quote Link to comment Share on other sites More sharing options...
jangle Posted January 24, 2012 Author Report Share Posted January 24, 2012 Oh honestly I have no idea. They might be the same thing. If you can look up the compound in the merck manual and see if it is the same chemical structure as calcitriol. It should have three "OH" chemical groups on it. Quote Link to comment Share on other sites More sharing options...
derekliz Posted January 24, 2012 Report Share Posted January 24, 2012 just found my levels taken 9/2010 which I was only having fatigue at the time:VITAMIN D, 25 OH TOTAL 45 RANGE 30-100VITAMIN D, 25 OH, D2 <4 (NO RANGE)VITAMIN D, 25 OH, D3 45 (NO RANGE) Quote Link to comment Share on other sites More sharing options...
jangle Posted January 25, 2012 Author Report Share Posted January 25, 2012 I hate to say anything, because I feel like it might in some way curse the future results to being erroneous. However, as I read over the explanation they gave, it all seems very plausible and most excitingly, it seems to touch some of the fundamental ideas associated with POTS. Things like the NET dysfunction, the alpha/beta receptor dysfunction, and the elevated norepinephrine.But what worries me is why hasn't this received more attention? Is it that POTS researchers are completely unaware of this case study? I mean there isn't a lot of people researching POTS, perhaps only a handful. Still I would think something like this would be known to them, especially after 2 and a half years. It concerns me that maybe there's something flawed about the whole idea.But then, the better half of me really does think that they never actually did notice this report, and that no studies have been conducted on the manner, it represents a potentially new and exciting method of treating POTS! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 17, 2012 Report Share Posted August 17, 2012 I'm bringing Jangle's thread up again. If only I had paid more attention to it back in January. But, then again, I didn't have my 23andme genetic results, so wouldn't have seen a connection with me.So, Jangle or Derekliz, did you have your 1,25 D levels checked? Were they normal or not? Quote Link to comment Share on other sites More sharing options...
jangle Posted August 17, 2012 Author Report Share Posted August 17, 2012 I'm bringing Jangle's thread up again. If only I had paid more attention to it back in January. But, then again, I didn't have my 23andme genetic results, so wouldn't have seen a connection with me.So, Jangle or Derekliz, did you have your 1,25 D levels checked? Were they normal or not?Ya, but don't be discouraged, you might have a type of POTS that is responsive. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted August 17, 2012 Report Share Posted August 17, 2012 Ya, but don't be discouraged, you might have a type of POTS that is responsive.Confused. Did you have the test done and it was normal? Did you try the Calcitriol? Quote Link to comment Share on other sites More sharing options...
jangle Posted August 18, 2012 Author Report Share Posted August 18, 2012 Sorry ya I had it done and my levels were actually high. I tried calcitriol but had to stop due to side effects. Probably because of the high levels. Quote Link to comment Share on other sites More sharing options...
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