Elevated Vitamin D 1,25 Dihydroxy and Low Vitamin D, 25-OH

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Hello all,

I have an abundance of multi-system symptoms that seem to be some sort of chronic version of ME, dysautonomia, autoimmune or other "zebra" type issue yet to be diagnosed.

Recently, an endocrinologist that also specializes in Mast Cell Activation Syndrome (a hunch that I had and we are still awaiting some results) discovered that I have elevated Vitamin D 1,25 Dihydroxy (the active version) and low Vitamin D, 25-OH (the precursor often measured by doctors when determining deficiency). Normal parathyroid hormone and calcium levels.

We are running other tests for certain infections, sarcoidosis, granulomous diseases, etc. however none of these seem at all in-line with the symptoms I am experiencing. I am wondering if anybody else has had this show up and if so, were you ever able to determine what was causing it. Thanks!
 

Wally

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@jpredsoxdude00 - Not sure if this will be helpful to figure out what may be going on with Vitamin D blood level tests, but I have been posting some interviews with Dr. Stasha Gominak that involve her research, findings and hypotheses about Vitamin D. In one of her videos, she explains how different equipment at labs used for testing Vitamin D can produce different results. While I believe she was discussing the 25 OH test when blood levels are above 40, it may be important to know exactly what assay was ordered to determine how accurate the result might be for future testing. Here is the link to the video where she discusses this issue.
- Discussion re lab equipment used to test Vitamin D can produce different results starts at hour/minute marker 1:50 to 1:54. This is the name of the Vitamin D blood test that uses the more expensive mass spectrometer lab equipment for testing the 25 OH level - D3 25OH level (LC/MS technique).

As to the difference between the two Vitamin D Blood Tests and why they might show a high level on one and a low level on the other, this link might provide a possible explanation as to why the two test levels might be different. https://education.questdiagnostics.com/faq/FAQ199

Also here are a couple of papers and a recent blog post re MCAS and Vitamin D that might be of interest to you.
1) https://www.ncbi.nlm.nih.gov/pubmed/27998003 (2017)
2) https://www.ncbi.nlm.nih.gov/pubmed/29212100 (2017)
3) https://europepmc.org/article/PMC/4405605 (2015)
4) https://mastcell360.com/will-vitami...activation-syndrome-or-histamine-intolerance/ (Sept. 2019)

Also if you are interested in reviewing more of Dr. Gominak’s work related to illness, microbiome, vitamin D and restorative sleep here is the post(s) I have recently added to the Forum. https://forums.phoenixrising.me/thr...ess-microbiome-vitamins-d-b5-and-sleep.78899/
 

Art Vandelay

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Yes, I've always had low 25 D and very high 1,25 D.

My doctor's theory is that some pathogens (herpes viruses, borrelia) can block the vitamin D receptor. This causes the kidneys to crank out more 1,25 D (I think - my memory is very bad).

This imbalance in vit D seems common in CFS and other conditions and was also noted by the people behind the Marshall Protocol (see attached paper).
 

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uglevod

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Your macrophages were upregulated to convert D25 into D125 without limit(feedback) hence the high D125 and low(downregulated) D25. The conversion speed is determined by VDR expression level which in turn increases with any pathogen(virus, bacteria) and toxin challenge of TLR receptors.

> Dr. Stasha Gominak

Does she know anything about VDR?

> why they might show a high level on one and a low level on the other

Does she know what "half-life" means and the D1.25 half-life?
 
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Hi there,

Does anyone know what constitutes low vitamin d 25oh? As opposed to defiency. My test results over 2 years came back at 95 (OH) in the autumn and 109 (hydroxy) in the spring. The 95 seems low? But lowest range for the test was 50 so maybe not.

My immune strength seems to take a nose dive in December which is winter start here and then stays that way without really recovering until April 1st.

Thanks
 

uglevod

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People's D25 drops as they age due to their chronic in-cells microbiome growth. Some immune defficiency conditions like HIV greatly accelerate bacterial replication hence those people generally have negletible D25, but actually any superinfection will do, just at the different rate. D25 is the best marker of overall(true) health.
 

jen1177

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Hello all,

I have an abundance of multi-system symptoms that seem to be some sort of chronic version of ME, dysautonomia, autoimmune or other "zebra" type issue yet to be diagnosed.

Recently, an endocrinologist that also specializes in Mast Cell Activation Syndrome (a hunch that I had and we are still awaiting some results) discovered that I have elevated Vitamin D 1,25 Dihydroxy (the active version) and low Vitamin D, 25-OH (the precursor often measured by doctors when determining deficiency). Normal parathyroid hormone and calcium levels.

We are running other tests for certain infections, sarcoidosis, granulomous diseases, etc. however none of these seem at all in-line with the symptoms I am experiencing. I am wondering if anybody else has had this show up and if so, were you ever able to determine what was causing it. Thanks!
First, what does "zebra" type mean?
I have the same blood test results as you. The one level of vit.D is just a bit over the limit, the other is always low or low normal. I take 1000 IU of D3 each day. No calcium supplements. I've been suspecting a parathyroid problem for years but can't find an endocrinologist who thinks it's from that. My blood calcium level is on the high end of normal and sometimes is slightly above the upper limit but my PTH is always normal in the mid range. I went back through my older blood test results from years ago and found one blood test where my calcium level was what it usually is but I had LOW PTH which would mean that the parathyroids were working better back then and maybe aren't working right now. I do have nearly all the symptoms of hyperparathyroidism and even recently had a small stroke. I am now thinking that my parathyroids were probably damaged during my thyroidectomy surgery back in 2002. I never fully recovered from that surgery and have been disabled (unable to work) ever since.