Poll I'm struggling with Vitamin D levels, and now Hyperphosphatemia

[Not dead yet!]

I'm not sure how well I can describe this today. I'm fighting to focus my eyes. But it's because of today's crash that I"m looking into an "odd" lab result from an osteopath I went to see. I apparently have too much phosphorous in my blood. She didn't think it was a big deal, but what I found seems to connect back with my vitamin D levels, and/or with my suspicion that my parathyroid has issues. The connection for me was when I looked up the Vitamin D receptor (VDR), because apparently infections and tonxins (from infections or other sources) can shut down this receptor. Selected Google results follow, the search term was "nfections or toxins block VDR receptors"

Inflammation and vitamin D: the infection connection - NCBI - NIH

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4160567/
by M Mangin - ‎2014 - ‎Cited by 61 - ‎Related articles
Jul 22, 2014 - Keywords: Vitamin D, Infection, Inflammation, Immunotherapy ... transports 1,25(OH)2D to the vitamin D receptor (VDR) in the cell nucleus [5]. .... The belief that sunscreen lotion blocks vitamin D production is based on a 1987 .... be viewed in terms of vitamin D toxicity such as hypercalcemia, hypercalciuria, ...
The Vitamin D Receptor and T Cell Function - NCBI - NIH

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3684798/
by M Kongsbak - ‎2013 - ‎Cited by 78 - ‎Related articles
Jun 18, 2013 - The vitamin D receptor (VDR) is a nuclear, ligand-dependent .... The VDR-KO mice have significant fewer iNKT cells, due to a block ... infection (Baeke et al., 2011); and hence implying a role for VDR in all phases of T cell differentiation. ..... (1995) plasma toxins from uremic patients was shown to bind to the ...
Vitamin D receptor and epigenetics in HIV infection and drug abuse

https://www.ncbi.nlm.nih.gov › NCBI › Literature › PubMed Central (PMC)
by N Chandel - ‎2015 - ‎Cited by 2 - ‎Related articles
Aug 19, 2015 - Vitamin D receptor and epigenetics in HIV infection and drug abuse .... HIV and MA are more toxic together and both affect the same region of brain; ..... Class IHDAC inhibition blocks cocaine-induced plasticity by targeted ...
Metabolism of vitamin D and the Vitamin D Receptor (MPKB) - MPKB.org

https://mpkb.org/home/pathogenesis/vitamind/metabolism
Evidence for high 1,25-D in patients with chronic disease ..... When bacterial ligands block the VDR, the Receptor is prevented from transcribing ... gliotoxin, a toxin which dose-dependently downregulates VDR mRNA and protein levels.

Vitamin D and the Compromised Immune System

https://www.chronicillnessrecovery.org/index.php?option=com_content&vi...
Jun 16, 2014 - Persistent intracellular bacterial infection compromises the immune system and ... [7] For example, regulation of the vitamin D receptor (VDR) is a ... Aspergillus fumigates secretes a toxin capable of down-regulating VDR in macrophages. .... expression in kidney cells by blocking the NF-kappa B pathway.
Metadichol® and MRSA Infections: A Case Report | Open Access ...

https://www.omicsonline.org/.../metadichol-and-mrsa-infections-a-case-report-2332-0...
They do so by blocking VDR receptor that is responsible for innate immunity, and this ... MRSA-infected patients have lower serum vitamin D levels than non-MRSA ... of how Metadichol works is in its actionably acting on the vitamin D receptor. ... particularly given that it has demonstrated no toxicity at doses of up to 5000 ...
Excess Vitamin D: Too Much Of A Good Thing? - Nature of Healing

www.natureofhealing.org/2176-2/
Feb 14, 2016 - Active vitamin D, in the presence of no open VDR receptors, binds to other receptors: such ... When observing patients with autoimmune disease, inactive 25-D, lacking one hydroxyl group, can block the VDR gene. ... Opportunistic bacteria, yeast, and fungus, and their toxic byproducts (biotoxins), create an ...

Since my results may be different from yours, I'll mention that I"ve had MRSA skin infections form time to time. They seem to go away though with antiviral treatment, so it looks like the probably-herpes virus just opens the door for MRSA. I wish this mechanism were clarified. It's also significant I think, that HIV is mentioned in the Google results. I've found at least a few people online who describe ME/CFS as a non-deadly cousin of HIV. Although we may recoil from that description, I'll accept any and all help as long as it's effective.

The search term came from this article which I think is very helpful about how to reactivate these receptors: https://selfhacked.com/blog/natural...itrol-and-vitamin-d-receptor-gene-expression/

I must say I like that website (selfhacked), once in a while it has a gem in it like this. I struggle with keeping my Vitamin D levels up. But I quickly learned that maybe my body doesn't use what I take, or it ignores it even if the levels are good. Over the years I learned that my body may have permanently switched to using Vitamin D2, or that the active calcitrol that is made from it might work better for me. It makes buying the vitamin very hard since 99% of what you find out there is D3.

Not even tanning booths work consistently to solve my vitamin D issues. Perhaps the reason is the ME/CFS itself, maybe this could be the key to finding the cause, if a toxin could be identified (I mean, consistently in all ME/CFS patients), and the source found.

Also, of course, I'm doing this reading to see if I can find something to help myself. If you have ideas that work for you with Vitamin D, I'd like to hear about it. Thanks

Other references:
Hyperphosphatemia (Merck Manual Pro)
http://www.merckmanuals.com/profess...rders/electrolyte-disorders/hyperphosphatemia

Calcitrol (the drug form of active Vitamin D)
https://www.rxlist.com/rocaltrol-drug.htm

 

[AmberHope]

I was not successful at multiple attempts to raise my low vitamin d level, either. I think it has been too long since I had a test which might show my phosphorus level, to see what it is, though now I am wondering, since you said what you did. Of course my doctors would not have thought anything of any phosphorus level I had, as they don't think much about any of my results...ugh....
Thank you for bringing this to our attention. And maybe I will think of something else to add, another day. I will read more of your post, then too, since I could not read and take it all in, at one try.

Thanks again, and I hope for some good info that will help you.

 

[Not dead yet!]

I was not successful at multiple attempts to raise my low vitamin d level, either. I think it has been too long since I had a test which might show my phosphorus level, to see what it is, though now I am wondering, since you said what you did. Of course my doctors would not have thought anything of any phosphorus level I had, as they don't think much about any of my results...ugh....
Thank you for bringing this to our attention. And maybe I will think of something else to add, another day. I will read more of your post, then too, since I could not read and take it all in, at one try.

Thanks again, and I hope for some good info that will help you.

I do tend to write long posts

I had the comical event of being told to take 2000 IU of vitamin D3 by my doctor. It was funny/tragic because I was already taking 10k IU daily, and a 5k IU kicker of D2. So far the only consistent way is to take the 50k D2 pill once a week, with smaller doses during the week. The trouble is, I don' think my body uses it, I often have two or three days of nausea following the weekly pill. This connection to infections might be the reason why. I noticed the selfhacked guy mentioned H.pylorii, which I already had treatment for once, and it hasn't been mentioned since, although the test is simple enough. Doctors just don't have the kits, so they don't test.

I also wonder if my body is seeking calcium when it gives me cravings for cheese. It might be more effective to drink milk during such a craving. Or tofu. Once you get past the "fortified" foods on the USDA list of highest calcium foods, tofu and whey powder stand out as the highest, almost-"real foods" in the list. The real food for those would be cooked soybeans (lacking in calcium sulfate used in tofu making), and regular milk. So we're back to square one, lol.

I was amused to see that baking powder topped the list. Probably need to eat more pumpkin bread... I'm always saying that. Heh.

https://ndb.nal.usda.gov/ndb/nutrie...=0&offset=25&sort=c&totCount=8160&measureby=g

 

[AmberHope]

Yes, pumpkin bread might help us cure a number of our maladies, including.... especially.... pumpkin bread deficiency.
I guess that just sounds good to me today, and I am unable at this moment to write anything more coherent or intelligent, but I am thinking of you.

 

[IrisRV]

I had the comical event of being told to take 2000 IU of vitamin D3 by my doctor. It was funny/tragic because I was already taking 10k IU daily, and a 5k IU kicker of D2. So far the only consistent way is to take the 50k D2 pill once a week, with smaller doses during the week.

I was not successful at multiple attempts to raise my low vitamin d level, either.

I had low Vit D levels that I could not get into range. Well, there was one situation... I was taking a Ca supplement with a bit of D3. After months of taking it, I got a recall notice that the supplement actually had 10,000 times the listed amount of D3 and that I should see my doc immediately.

I was tested and found to have Vit D levels above range! Not dangerously high, but far enough above range that I was told to take no vit D for several months and test again. After that I was stuck below range again. Sadly, the best I ever felt with this damned disease is when my vit D levels were above range, but it simply isn't safe to take that much Vit D.

My ME/CFS specialist recommended that I use sublingual D3 liquid rather than pills because absorption is better. It is also less likely to make you nauseated since the vit D is not absorbed in the digestive tract.

It did help, so I highly recommend it. An additional advantange is that if you have a cooperative doctor, you can increase the dose a bit at a time with liquid. If you get regular testing, you can eventually (theoretically) find the vit D dose that will get you in range without overdoing it. The right level for you might be much higher than the typical dose. Not that that completely resolved my deficiency because I reached the highest D3 dose my doc was willing to recommend before I got in range. Still, I got close to the bottom of the range, which was an improvement.

I cannot explain this, nor am I at all convince there is truly any connection, but I'll report the experience as part of my whole Vit D story. As soon as I started getting IVIG (which has no known connection to vit D levels) I could get into mid-normal range for vit D using highish normal vit D doses. After decades of fighting to even get in range. Go figure.

 

[Not dead yet!]

Yes, pumpkin bread might help us cure a number of our maladies, including.... especially.... pumpkin bread deficiency.
I guess that just sounds good to me today, and I am unable at this moment to write anything more coherent or intelligent, but I am thinking of you.

I suffer from pumpkin bread deficiency too... oh woe! LOL

@IrisRV I think you should do whatever is best for you. I'm not one to follow "safe" rules though. I don't think we don't know enough about human health to make such broad generalizations and then apply them to everyone without taking into account individual variation. Basically, I wouldn't sweat it if something "unsafe" works for you. No doubt oxygen concentrators are "unsafe" if you ask a fireman. But they help ME/CFS patients a lot. If we had a truly helpful medical system, they wouldn't use the same "ranges" of low/normal/high for every person, they'd use individualized ones based on your epigenetics and local conditions (nature and nurture). But we're not going to get to that point in my lifetime, so I don't stress about it.

Having researched the effects of overdoses of Vitamin D (the main place where that happens is Kashmir, in India, you can probably find the same articles I can), I'm not that worried. The incidence of OD seems low to me, and the cure is simple. However, you should do what you're comfortable with. I just want everyone to get well (not just me), and I cringe when I see someone get a benefit and then throw it away because of a "safety" measure that may be too strict.

I also haven't worn sunscreen in years and go to tanning salons whenever I fell well enough to get there in winter. I'd probably wear sunscreen if I was in southern Australia, but I"m not. (See? Local conditions. )

 

[Zapped]

Also, of course, I'm doing this reading to see if I can find something to help myself. If you have ideas that work for you with Vitamin D, I'd like to hear about it. Thanks

I gave D3 a try earlier, up to 150k daily, after starting with 50k daily. In summary, I couldn’t tell much difference, but I only went for a couple of months; probably needed more.

You might like a thread here in the Healthrising.org/forums on this very topic, Vitamin D3. In specific there’s a reference to a fairly recent and updated interview with Dr. Coimbra, the Brazilian doctor who originated the D3 research. He gives out some serious advice. Here’’s the link from my notes:
*http://www.vitamind.net/interviews/coimbra-ms-autoimmun Nov 12, 2016
(*may need to get it translated if this link isn’t English version.)

In the interim, you may not be aware of the supplements he recommends when taking high doses, (excerpted): B2, K2, K3, Magnesium, selenium and chromium. Avoid dairy and drink a liter +of water daily to lower the risks of kidney or gall stones.

I hope this isn’t duplicate info, but I didn’t see it in your references

 

[IrisRV]

@IrisRV I think you should do whatever is best for you. I'm not one to follow "safe" rules though. I don't think we don't know enough about human health to make such broad generalizations and then apply them to everyone without taking into account individual variation.

If we had a truly helpful medical system, they wouldn't use the same "ranges" of low/normal/high for every person, they'd use individualized ones based on your epigenetics and local conditions (nature and nurture).

However, you should do what you're comfortable with. I just want everyone to get well (not just me), and I cringe when I see someone get a benefit and then throw it away because of a "safety" measure that may be too strict.

I agree with you on all these points. The vit D was an exception only in that we were up to very high doses -- to the point where if we increased more and anything changed, or even in the normal course of events, a single dose could cause toxicity, we decided that was fundamentally unsafe. Also, once you get to doses as high as I was without making much of a difference in blood levels, something else is going wrong, the D3 was going somewhere unknown and shoving toxic-level doses of D3 into myself was not addressing that.

Yeah, I felt better for a couple of months accidently taking 10,000 times the normal dose for several months, but that doesn't mean I'd continue to feel better or that something bad that I couldn't feel wasn't happening at the same time. On this one I had to give up. And good thing as it turned out, because if I'd been taking very high vit D doses when the miracle occurred and suddenly my blood levels normalized, I could have been taking now toxic doses for a long time without realizing I didn't need them anymore.

It's complicated when our bodies clearly aren't processing many things normally -- one of the many frustrations of living with this damned disease. It's almost impossible to know what's good for us and where the boundaries are.

 

[Not dead yet!]

I agree with you on all these points. The vit D was an exception only in that we were up to very high doses -- to the point where if we increased more and anything changed, or even in the normal course of events, a single dose could cause toxicity, we decided that was fundamentally unsafe. Also, once you get to doses as high as I was without making much of a difference in blood levels, something else is going wrong, the D3 was going somewhere unknown and shoving toxic-level doses of D3 into myself was not addressing that.

Yeah, I felt better for a couple of months accidently taking 10,000 times the normal dose for several months, but that doesn't mean I'd continue to feel better or that something bad that I couldn't feel wasn't happening at the same time. On this one I had to give up. And good thing as it turned out, because if I'd been taking very high vit D doses when the miracle occurred and suddenly my blood levels normalized, I could have been taking now toxic doses for a long time without realizing I didn't need them anymore.

It's complicated when our bodies clearly aren't processing many things normally -- one of the many frustrations of living with this damned disease. It's almost impossible to know what's good for us and where the boundaries are.

Yeah it's very true that our bodies seem to process things too slowly somehow, so clearing extra might be part of that slowness. I'm sorry you experienced toxicity. I guess I get some mild toxicity too because of the nausea, but I figure that many things give me nausea (due to migraines) so I'm only counting a few of the incidences as purely triggered by Vitamin D2 and D3. (I take both)


I wish I knew more about the ways in which pathogens occupy Vitamin D receptors, and why. I mean, it might be a mortal threat to pathogens, or just an artifact of how they live. Or they can be using my Vitamin D for their own purposes. I just don't know really.

 

[Not dead yet!]

I gave D3 a try earlier, up to 150k daily, after starting with 50k daily. In summary, I couldn’t tell much difference, but I only went for a couple of months; probably needed more.

You might like a thread here in the Healthrising.org/forums on this very topic, Vitamin D3. In specific there’s a reference to a fairly recent and updated interview with Dr. Coimbra, the Brazilian doctor who originated the D3 research. He gives out some serious advice. Here’’s the link from my notes:
*http://www.vitamind.net/interviews/coimbra-ms-autoimmun Nov 12, 2016
(*may need to get it translated if this link isn’t English version.)

In the interim, you may not be aware of the supplements he recommends when taking high doses, (excerpted): B2, K2, K3, Magnesium, selenium and chromium. Avoid dairy and drink a liter +of water daily to lower the risks of kidney or gall stones.

I hope this isn’t duplicate info, but I didn’t see it in your references

I did manage to use Google Translate to read that. It's very good. I had this exact thought process myself when I started to get serious about raising my Vitamin D levels:

"--------------------
The daily dose, which is internationally recommended today, is a poor dose, far below the physiological dose. The physiological dose is, as noted recently, a minimum of 7,000 daytime units for adults with a normal body mass index, the same amount that the body can produce in only 10 to 20 minutes of exposure to the sun - depending on the extent of exposure Body position (lying or standing), pigmentation of the skin, age and the sun. Sunscreens, by the way, block the ability of the body to produce vitamin D and should only be used when sufficient vitamin D has been produced.

10,000 IU are therefore a physiological dose, no super dose. However, most physicians consider this dose to be potentially toxic. Today, the recommended dose is still 600 international units - although this figure has been shown to be the result of a miscalculation! 600 international units are recommended, but if a person is exposed to the sun for only 20 minutes, he / she can easily produce 10,000 units! This is a clear discrepancy between medical practice and the current state of scientific knowledge.
"-------------------------

I'll have to read on to find out if he explains the miscalculation. I sometimes think that doctors quote a baby dose so that overzealous moms won't OD their kids on an adult dose.

Thanks for that reference! Give that man a (sorry, couldn't find the thumbs up smiley, lol)

 

[Not dead yet!]

Wow so the "miscalculation" is actually pretty mainstream:

Canadian News: http://www.ctvnews.ca/health/vitamin-d-recommendations-were-miscalculated-study-suggests-1.2287342

The study it is based on: http://www.mdpi.com/2072-6643/6/10/4472/htm

Quote from the study: ". It also estimated that 8895 IU of vitamin D per day may be needed to accomplish that 97.5% of individuals achieve serum 25(OH)D values of 50 nmol/L or more. As this dose is far beyond the range of studied doses, caution is warranted when interpreting this estimate. Regardless, the very high estimate illustrates that the dose is well in excess of the current RDA of 600 IU per day and the tolerable upper intake of 4000 IU per day [1]. "

... but then again it also warrants from those who suspected all along.

What in the world are they thinking starving people of vitamins? At what point does a crazy declaration like "you don't need vitamins, you should get them from your food" become malfeasance? Because getting Vitamin D from your food would require a food system that includes fish livers (which is why still-traditional people who live way up north don't get Vitamin D deficiency).

Malfeasance?
"12 Ways to Get Your Daily Vitamin D"
http://www.health.com/health/gallery/0,,20504538,00.html

Well I'm the rage against the machine type, so you know what my answer is.