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ME Assoc. June survey - Vit. D testing

Mij

Senior Member
Messages
2,353
Great wonder what thats supposed to mean....

Well sir everything looks within range.....your good to go....but????......there is nothing wrong with you sir

It's possible they're updating their knowledge concerning vitamin D? It's the same with B12, in Canada our reference range is too low compared to Japan and other countries. I was within range for B12 (below 300) and had B12 deficiency symptoms but my doctor said, 'you are fine you don't need shots'. I felt terrible.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
I had a naturopath prescribe my methylB12 shots - though I think the rules about what NDs can and cannot do may differ in each province.

Here in Ontario, my ND was telling me a new rule required that she pass an exam before being able to prescribe vitamin D - and iirc, NDs had adhere to a daily maximum of 5k?? (so she couldn't endorse my 10k / day).
 

Justin30

Senior Member
Messages
1,065
I had a naturopath prescribe my methylB12 shots - though I think the rules about what NDs can and cannot do may differ in each province.

Here in Ontario, my ND was telling me a new rule required that she pass an exam before being able to prescribe vitamin D - and iirc, NDs had adhere to a daily maximum of 5k?? (so she couldn't endorse my 10k / day).

Cant you buy vitamin D at the supplement store. I am bit confused?
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
@ScottTriGuy is your ND testing your vitamin D levels when you are taking this amount? both D tests

My new GP (who has a keen interest in ME, worked with Klimas for a month) said on Tuesday my vitamin D level was fine - not sure which D test, kind of remember her saying the 25 test.

@Justin30 I recently switched to D-drops which are apparently more bio-available - should be available at quality health stores.
 

Mij

Senior Member
Messages
2,353
My new GP (who has a keen interest in ME, worked with Klimas for a month) said on Tuesday my vitamin D level was fine - not sure which D test, kind of remember her saying the 25 test.

@Justin30 I recently switched to D-drops which are apparently more bio-available - should be available at quality health stores.

A friend who was taking D-drops (only one a day) told me just recently that his D levels were very low. I"m guessing one drop isn't enough.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
A friend who was taking D-drops (only one a day) told me just recently that his D levels were very low. I"m guessing one drop isn't enough.

Yea, I'm taking about 5 or 6 drops I'd guess, to be honest its hard to tell coz the dropper is in my mouth - plus I get another 2k from multi-vitamin.
 

Kati

Patient in training
Messages
5,497
Vitamin D supplementation eliminated my seasonal affective disorder/depression symptoms. When tested, despite over recommended dose (I was at 4000 I.U. per day), my levels were still sub-optimal. So I am at 6000 I.U. now. And like @Justin30 said, a regular GP can no longer order it.
 
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Justin30

Senior Member
Messages
1,065
Certain CFS Drs have found issues with the vitamin D receptor itself. As per the low D levels.
 

Justin30

Senior Member
Messages
1,065
Results back today lowest range 40 -130 I was 45.

I already know through testing that the receptor is messed up.....

A bunch a swear words....start FUNDING this!!!!!
 

Justin30

Senior Member
Messages
1,065
@Justin30 how much vitamin D are/were you taking?

I was only taking 2000 IUs over the last week I have been titrating up and am now up too 6000 IUs.

My guess with this illness is that absorption and conversion of foods to energy is seriously messed up....Mito and Gut which leads to high levels of free radicals, toxins and tissue damage to organs and the brain....
 

Mij

Senior Member
Messages
2,353
@Justin30 yeah our gut is big issue. Are you taking enough magnesium?

Magnesium status appears to impair vitamin D metabolism. My D levels (both 25OHD and 1,25) were below normal years ago and I was able to increase my D levels once I increased Mg (which was also below normal).

I take 2000-3000iu/day of vitamin D and it keeps my levels up around 70ish.

Low serum concentrations of 1,25-dihydroxyvitamin D in human magnesium deficiency.

Rude RK, Adams JS, Ryzen E, Endres DB, Niimi H, Horst RL, Haddad JG Jr, Singer FR.
Abstract
The effect of magnesium deficiency on vitamin D metabolism was assessed in 23 hypocalcemic magnesium-deficient patients by measuring the serum concentrations of 25-hydroxyvitamin D (25OHD) and 1,25-dihydroxyvitamin D [1,25-(OH)2D] before, during, and after 5-13 days of parenteral magnesium therapy. Magnesium therapy raised mean basal serum magnesium [1.0 +/- 0.1 (mean +/- SEM) mg/dl] and calcium levels (7.2 +/- 0.2 mg/dl) into the normal range (2.2 +/- 0.1 and 9.3 +/- 0.1 mg/dl, respectively; P less than 0.001). The mean serum 25OHD concentration was in the low normal range (13.2 +/- 1.5 ng/ml) before magnesium administration and did not significantly change after this therapy (14.8 +/- 1.5 ng/ml). Sixteen of the 23 patients had low serum 1,25-(OH)2D levels (less than 30 pg/ml). After magnesium therapy, only 5 of the patients had a rise in the serum 1,25-(OH)2D concentration into or above the normal range despite elevated levels of serum immunoreactive PTH. An additional normocalcemic hypomagnesemic patient had low 1,25-(OH)2D levels which did not rise after 5 days of magnesium therapy. The serum vitamin D-binding protein concentration, assessed in 11 patients, was low (273 +/- 86 micrograms/ml) before magnesium therapy, but normalized (346 +/- 86 micrograms/ml) after magnesium repletion. No correlation with serum 1,25-(OH)2D levels was found. The functional capacity of vitamin D-binding protein to bind hormone, assessed by the internalization of [3H]1,25-(OH)2D3 by intestinal epithelial cells in the presence of serum was not significantly different from normal (11.42 +/- 1.45 vs. 10.27 +/- 1.27 fmol/2 X 10(6) cells, respectively). These data show that serum 1,25-(OH)2D concentrations are frequently low in patients with magnesium deficiency and may remain low even after 5-13 days of parenteral magnesium administration. The data also suggest that a normal 1,25-(OH)2D level is not required for the PTH-mediated calcemic response to magnesium administration. We conclude that magnesium depletion may impair vitamin D metabolism.

PMID:
3840173
 

Justin30

Senior Member
Messages
1,065
Magnesium status appears to impair vitamin D metabolism. My D levels (both 25OHD and 1,25) were below normal years ago and I was able to increase my D levels once I increased Mg (which was also below normal).

I take a ton of Mag Malate and Glycinate and was just tested and was at the bottom of the scale it think the range was .8 - 1.2 and I was .8 besides taking 900mg daily.

I will start doing magnesium shots again to raise the deficit. I Have another mag test to be done in a few days as well as a potassium so I will do both.
 

Mij

Senior Member
Messages
2,353
@Justin30 I was depleted in magnesium, so yes I took tons of magnesium and taurine injections for years, I felt so good on them- as though I had extra fuel in the tank. I now rub magnesium chloride gel on my skin to keep my levels up.

I didn't benefit from taking mg supplements because I wasn't absorbing it.

What testing are you having for mg levels? RBC? It's not an accurate test, but if you are lowish then you are already 1/3 depleted.
 

Justin30

Senior Member
Messages
1,065
Does the magnesium chloride gel work good?

Where do you get it?

I do Mag Taurine Shots as well....but have backed off them a bit.

Do you have Dyautonomia as well I felt th Mag Taurine was messing with my POTS a bit.

On our forms it just says Mag. RBC is separate.

My Gut and Pots have both been messed up from a crash 6 months ago.

How is your gut overall?
 

Mij

Senior Member
Messages
2,353
@Justin30 this is the brand I buy. You can buy through a Canadian distributor. Scroll down the page and you can see the chart from ExaTest (where they measure mg in the cells) and how well transdermal works.

http://www.ancient-minerals.com/transdermal-magnesium/

My gut has improved quite a bit by eating fermented foods and taking digestive enzymes. It was terrible for many many years.

I have OI symptoms but I've never been properly tested for it.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
I recently discovered that Dr De Meirleir (KDM) is finding the usual Vitamin D test (for 25-OH Vitamin D) not helpful, as, according to him, ME/CFS patients, while having low serum 25-OH Vitamin D, often have "near toxic" levels of 1,25 OH Vitamin D (the activated version). Standard clinical labs generally don't test for 1,25 OH Vitamin D, but KDM does.

The only reference I have at the moment is this video. The vitamin D discussion starts after 4:30.
 

Justin30

Senior Member
Messages
1,065
1,25-Dihydroxyvitamin D

45
Performed by mass spectrometry. The reported result is the sum of separately quantified 1,25 dihydroxyvitamin D3 and D2.

40-170

pmol

I have been treated by KDM remember not everyone has the same presetation.

I believe the video is old but you have to remember that ME is not all the same disease. If your body has a malabsorption problem and/or magnesium deficiency then there is a problem.

I dont know what his thoughts are on this now.