• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

vitamin D level results --significance?

voner

Senior Member
Messages
592
my doc ran a vitamin D level tested. It's been low before...

Here's the results:

Vitamin D, 25 -- OAH, total = 23 ng/ml normal reference range 30 -- 100.....

my doc said this is actually a quite low vitamin D number.....

I kind of think of it as the same as many other reference levels letter abnormal -- so what? What does that tell me? Other that I should get a lot of sunshine and gobble a bunch of high quality supplemental vitamin D??? ( which are to do -- I get a ton of sunshine and I supplement with vitamin D)..

my docs are not real helpful on this.

/////////////////
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
my doc ran a vitamin D level tested. It's been low before...

Here's the results:

Vitamin D, 25 -- OAH, total = 23 ng/ml normal reference range 30 -- 100.....

my doc said this is actually a quite low vitamin D number.....

I kind of think of it as the same as many other reference levels letter abnormal -- so what? What does that tell me? Other that I should get a lot of sunshine and gobble a bunch of high quality supplemental vitamin D??? ( which are to do -- I get a ton of sunshine and I supplement with vitamin D)..

my docs are not real helpful on this.

It is just as important to get Vit D 1,25 tested and see the balance between them in order to decide on what to do.

Sushi
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
It is just as important to get Vit D 1,25 tested and see the balance between them in order to decide on what to do.

Sushi

I'd never heard that before. What kind of info does knowing the balance provide? I don't think I've ever had it tested.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I'd never heard that before. What kind of info does knowing the balance provide? I don't think I've ever had it tested.

Hi Ocean,

ME/CFS patients tend to have fairly high levels of one of the forms--I think it is Vit D 1,25, but not sure without going back and looking at all my tests. Maybe someone else remembers. I saw the ratio between mine normalize with GcMAF treatment--both came into range.

When 1,25 is too high it can indicate rising calcium levels which can be dangerous. Not many doctors test 1,25 but I was told to get both tested regularly.

Best,
Sushi
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
Hi Ocean,

ME/CFS patients tend to have fairly high levels of one of the forms--I think it is Vit D 1,25, but not sure without going back and looking at all my tests. Maybe someone else remembers. I saw the ratio between mine normalize with GcMAF treatment--both came into range.

When 1,25 is too high it can indicate rising calcium levels which can be dangerous. Not many doctors test 1,25 but I was told to get both tested regularly.

Best,
Sushi

Thanks Sushi.
 
Messages
15,786
I kind of think of it as the same as many other reference levels letter abnormal -- so what? What does that tell me? Other that I should get a lot of sunshine and gobble a bunch of high quality supplemental vitamin D??? ( which are to do -- I get a ton of sunshine and I supplement with vitamin D)..

It's not just any sunshine. To make vitamin D, you need to be exposed to UVB, which won't be available in colorado over the winter, and probably not for much of the spring or fall either. You don't need much of it: 5-10 minutes every couple days, but it's more likely to be around in the middle of the day (12:20-1pm or so at the start and end of UVB season, spreading out to 10:20-3pm in the middle of the UVB season).

So right now it's probably been over 6 months since you got any natural vitamin D from sun exposure. It's possible that you aren't absorbing it properly via supplementation, or you're taking a dose that's too small. The good news is that you're at 40 degrees north, give or take, so your UVB season has probably started already. I'm at 52 degrees north, and have to wait a couple more weeks :p

It's been studied in Boston (actual UVB detection, not just calculations), which is 42 degrees north, and they're UVB-free from November through February. And unless you know to show some skin just a bit after noon in October and March, you may not have been getting much then either.

http://www.ncbi.nlm.nih.gov/pubmed/2839537
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
my doc ran a vitamin D level tested. It's been low before...

Here's the results:

Vitamin D, 25 -- OAH, total = 23 ng/ml normal reference range 30 -- 100.....

my doc said this is actually a quite low vitamin D number.....

I kind of think of it as the same as many other reference levels letter abnormal -- so what? What does that tell me? Other that I should get a lot of sunshine and gobble a bunch of high quality supplemental vitamin D??? ( which are to do -- I get a ton of sunshine and I supplement with vitamin D)..

my docs are not real helpful on this.

/////////////////

You just may need to be taking more vitamin D3. I myself find my vitamin D level is on a dropping fall with just taking the standard D3 dose found in health shops. My specialist now has me taking 4000 IU daily.

Being very deficient in D increases your risk of cancer.
 
Messages
85
my doc ran a vitamin D level tested. It's been low before...

Here's the results:

Vitamin D, 25 -- OAH, total = 23 ng/ml normal reference range 30 -- 100.....

my doc said this is actually a quite low vitamin D number.....

I kind of think of it as the same as many other reference levels letter abnormal -- so what? What does that tell me? Other that I should get a lot of sunshine and gobble a bunch of high quality supplemental vitamin D??? ( which are to do -- I get a ton of sunshine and I supplement with vitamin D)..

my docs are not real helpful on this.

/////////////////

some say low Vit D indicates TH1 TH2/17 imbalance
 

voner

Senior Member
Messages
592
vitamin D level question clarification

thanks for the responses. I want to clarify my question about low vitamin D levels.

If someone has low vitamin D levels -- does this point to any dysfunctions that can be related to ME/CFS/FMS or a autoimmune disease or related dysfunctions???

I'm not interested in cancer, or any other dysfunction not directly related to symptoms of ME/CFS/FMS (except for "neurological" pain symptoms -- which a lot of us have)......

where I'm coming from here is that -- I'm sure a lot of us have been tested for this and that 10 occasionally there's something that comes up with an almost -- like for me red blood cell count for magnesium is always low -- well that's interesting -- but how does it lead to some sort of protocol that may result in improving my symptoms?

for example -- low vitamin D levels just may be something that is a result of whatever dysfunctions/diseases/etc. is going on in my body, but it in itself does not point towards any protocol that improves symptoms. It's like all these research reports that come out -- they say this is anomalous, that is anomalous, etc in ME/CFS/FMS patients, but what good is this in current clinical applications? if it's doesn't result in any clinical application, then I don't need to pursue it at this time. Maybe in the future -- but not at this time......
 
Messages
15,786
where I'm coming from here is that -- I'm sure a lot of us have been tested for this and that 10 occasionally there's something that comes up with an almost -- like for me red blood cell count for magnesium is always low -- well that's interesting -- but how does it lead to some sort of protocol that may result in improving my symptoms?

It seems like a common problem in people with ME/CFS, but it's also a common problem for everyone else. And as far as I know, there isn't a strong theory on how it might specifically be involved with ME/CFS. I think most doctors put patients on a high dose of vitamin D (sometimes with injections?) and monitor it until it improves. I haven't heard of treating it curing anyone though, or even relieving ME/CFS symptoms.
 

xrunner

Senior Member
Messages
843
Location
Surrey
I agree with testing for 1,25d first. You may want to know first why D is low rather than assuming you just need to take in more. It could be low for different reasons: intake has been subpar or meds may have affected its metabolism (my case), or the metabolism of D is dysfunctional.

It is just as important to get Vit D 1,25 tested and see the balance between them in order to decide on what to do.

Sushi

Sushi,
what lab do you get your D levels tested?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Sushi,
what lab do you get your D levels tested?

I have used various labs in different countries--in Belgium, Laboratorium Voor Medische Ontledingen, in Spain, Laboratorio De Analisis Dr. Echevarne, and different ones in the States.

Most labs (and Doctors) tend to just test Vit D 25.

Sushi
 
Messages
80
What to do?

I too have low vitD, but taking the supplements make me feel worse. It's just now getting warm enough to get out in the sun here in Minnesota. But that leaves about 7 months of no D. I did read that castor oil could work. Does anyone use that?
 

xks201

Senior Member
Messages
740
Clearly you are deficient. My doc says anything under 50 is deficient. I got mine up from the low 20s to 50 from taking oral vit d for a couple weeks. I take it everyday. Notice a huge improvement in nervousness and energy if I keep taking it.