• 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.

Higher Vitamin D

Messages
83
Location
Kent, England
Hello,

I wasn't quite sure where to post this so please feel free to suggest a more relevant forum if appropriate.

I'm combing through my medical records and trying to assign priority ratings to tests I would like to have done by looking for possible clues.

One thing which showed up, it may not be clinically significant but was unexpected, was that I had a relatively high serum vitamin D levels.

My level was 95 nmol/L (range 30-50)

I know that many consider this a good level to have -however this level was found at the end of the British winter (test was done in April) and I had never at this point supplemented vitamin D (oh to be blissfully ignorant of health issues again!). Nor do I eat fish. I am wondering how I could have achieved such good levels with no supplementation and after 5 months of a relatively dark and cold English winter.

I'm currently quite unwell with myriad symptoms but as yet undiagnosed...for reference my original post can be found here:

http://forums.phoenixrising.me/inde...gestions-and-stories.52415/page-3#post-868961

Is vitamin D implicated in any illness - possibly hormone related?

Thanks for any thoughts...
 
Messages
83
Location
Kent, England
Have you looked at articles like this:

https://en.wikipedia.org/wiki/Hypervitaminosis_D

Notice it references that high levels of D could be caused by low levels of K:

https://en.wikipedia.org/wiki/Vitamin_K_deficiency

Definitely worth talking to your doctor about, particularly if/since you weren't taking supplemental D.

Thank you for the links, yes 'trapped' vitamins resulting from low levels of co-factors..

Although it's a possibility, it does seems unlikely to me - my diet contained dairy and lots of fresh vegetables including greens. My doctor wasn't interested because the levels aren't toxic. I'm digging around for clues as my illness is as yet undiagnosed.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Hello @Booksellercate

I am certainly no expert but from having been here on the forums a while I think you might consider the possibility that while your serum levels are high it doesn't indication massive amounts of vitamin D in your system so much as something in the cycle using vitD is broken and the D is not getting into the tissues the way it should normally.

I have no idea if this is the case but I have noticed, as I said, from reading here that things are not always as they at first seem and the straight forward obvious conclusion to draw is not always what is going on.

PS As I'm typing I'm seeing your response above my post to tenuous grip. I guess that could be one possibility.
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
It is definitely a very strange result. Did you test calcium or phosphate, too at the time? You would be expected to have pretty high values of those as well.

After 5 months of essentially zero Vitamin D intake, I'd expect your readings rather to be in the 15-30 range. And I lived in the UK for some time, so I know it's not like you can really fill up your entire reserves during the summer :D

I think there are two main questions that are important now:

(1) Does the strange reading point to some kind of endocrine disorder? Vitamin D is in a formal sense a hormone, so you might want to see an endocrinologist to check this.

(2) Does the Vitamin D have anything to do with your *current* symptoms? The first step here would be to check if your lab tests today are still so strange. That could also be done by an endocrinologist.

So if I were you, I would make an appointment and let the endo do a full test of the Vitamin D-calcium metabolism.

As far as I know, that would include:

Calcium in the blood serum
Ionized Calcium in the blood serum
Phosphate in the blood serum
Parathyroid hormone (PTH)
25-OH Vitamin D3 (long-term inactive form of Vitamin D)
Calcitriol (active form of Vitamin D)

I would say all these tests are needed before you can make any statement on the Vitamin D.
 
Last edited:

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
To me, and I have no expertise either, but that seems so high, especially for not having taken any supplementation, and not living under high sun exposure location..\
It would make me want to investigate, but how????

Many of us who tried without success to raise our very low vitamin d level, coudnt get it at all, near that.
Certainly seems like it MIGHT be significant, but again, I wouldn't know what doctor or how to find out any more info on it. I would want to, though, if it were me.
 
Messages
83
Location
Kent, England
Hello @Booksellercate

I am certainly no expert but from having been here on the forums a while I think you might consider the possibility that while your serum levels are high it doesn't indication massive amounts of vitamin D in your system so much as something in the cycle using vitD is broken and the D is not getting into the tissues the way it should normally.

I have no idea if this is the case but I have noticed, as I said, from reading here that things are not always as they at first seem and the straight forward obvious conclusion to draw is not always what is going on.

PS As I'm typing I'm seeing your response above my post to tenuous grip. I guess that could be one possibility.

I agree that things may not be as they seem-in fact this vitamin D query is a side issue! Goodness know how we find out about the side issues of side issues!
I don't know much about vitamin D-my results are strange but not toxic levels so there is very little info relevant to my particular case. I wondered if I'd chance across somebody who had something similar. Somebody once mentioned high vitamin D levels in relation to the parathyroid-but I couldn't find much.

Low vitamin K is a possibility-although I find it unlikely given my diet.
 
Messages
83
Location
Kent, England
It is definitely a very strange result. Did you test calcium or phosphate, too at the time? You would be expected to have pretty high values of those as well.

After 5 months of essentially zero Vitamin D intake, I'd expect your readings rather to be in the 15-30 range. And I lived in the UK for some time, so I know it's not like you can really fill up your entire reserves during the summer :D

I think there are two main questions that are important now:

(1) Does the strange reading point to some kind of endocrine disorder? Vitamin D is in a formal sense a hormone, so you might want to see an endocrinologist to check this.

(2) Does the Vitamin D have anything to do with your *current* symptoms? The first step here would be to check if your lab tests today are still so strange. That could also be done by an endocrinologist.

So if I were you, I would make an appointment and let the endo do a full test of the Vitamin D-calcium metabolism.

As far as I know, that would include:

Calcium in the blood serum
Ionized Calcium in the blood serum
Phosphate in the blood serum
Parathyroid hormone (PTH)
25-OH Vitamin D3 (long-term inactive form of Vitamin D)
Calcitriol (active form of Vitamin D)

I agree- they're strange given the circumstances. Also, my understanding is that these sort of levels are usually only attainable via aggressive supplementation not the more natural form of sun exposure.

Calcium and phosphate were checked and within range-both lower end but within.

I'm hoping to get my vitamin D checked again (although I have supplemented regularly since last year).

I requested seeing an endocrinologist but was declined (more generally for my symptoms)- you might remember the NHS as well as the lack of sunshine if you lived in the UK! The trouble as well is that the doctors don't think these levels are clinically significant - although given the circumstances it is an abnormal reading. Getting real help here is like getting blood out of a stone. I'm doing my own digging but I'll look into vitamin D-calcium metabolism.
 

alicec

Senior Member
Messages
1,572
Location
Australia
My level was 95 nmol/L (range 30-50)

I think the range you are quoting is for ng/ml, not for nmol/l, also I suspect the figure is a suggested optimal level rather than the full normal range.

A typical range in nmol/L is 50-300, with at least 75-88 likely to be optimal. Above that, optimal levels are not clear but, provided vit A and K are adequate (these mediate vit D toxicity), 100-125 nmol/l may be ideal. This would translate to a range of 20-120 ng/ml with a minimum of 30-35 or up to 40-50 ng/ml with adequate A and K being ideal.

Vit D toxicity occurs at levels >375 nmol/l or 150 ng/ml.

Your result is in the ideal range, stop fussing.
 
Messages
83
Location
Kent, England
To me, and I have no expertise either, but that seems so high, especially for not having taken any supplementation, and not living under high sun exposure location..\
It would make me want to investigate, but how????

Many of us who tried without success to raise our very low vitamin d level, coudnt get it at all, near that.
Certainly seems like it MIGHT be significant, but again, I wouldn't know what doctor or how to find out any more info on it. I would want to, though, if it were me.

Yes, it is definitely strange. When you have a mystery illness with many symptoms which evades diagnosis, these little things must all be taken as potentially significant. I don't know how to investigate either-I'm also up against the restrictive NHS who will, and do, refuse basic tests such as ferritin, active B12 and potassium. I think I would struggle to find a doctor who would be willing or authorised to investigate. I've been off work for a year and have found myself in a wheelchair with no explanation-and been refused a referral to an endocrinologist. The healthcare here is crumbling :(
 
Messages
83
Location
Kent, England
I think the range you are quoting is for ng/ml, not for nmol/l, also I suspect the figure is a suggested optimal level rather than the full normal range.

A typical range in nmol/L is 50-300, with at least 75-88 likely to be optimal. Above that, optimal levels are not clear but, provided vit A and K are adequate (these mediate vit D toxicity), 100-125 nmol/l may be ideal. This would translate to a range of 20-120 ng/ml with a minimum of 30-35 or up to 40-50 ng/ml with adequate A and K being ideal.

Vit D toxicity occurs at levels >375 nmol/l or 150 ng/ml.

Your result is in the ideal range, stop fussing.

What an extraordinarily rude and unhelpful response!
The range and measurements are correct and taken directly from my results sheet. If you're in America, we use a different measurement range in UK, which might explain your misunderstanding.

Also, I am fully aware that my results are optimal-and stated this in my original post. My query concerned my levels in spite of no sun or supplementation. I know for a fact that these levels are quite difficult to obtain as my sister suffers from vitamin D deficiency. She has never been able to get above 50 and she supplements with high dose prescribed vitamin D.

You have completely missed the point of my post.

I am open to ideas and suggestions. But you have not only misunderstood my post, you've been insulting. Unless you have anything useful or productive to add to my query I would prefer it if you left this discussion.
 

alicec

Senior Member
Messages
1,572
Location
Australia
The range and measurements are correct and taken directly from my results sheet. If you're in America, we use a different measurement range in UK, which might explain your misunderstanding.

I am an Australian and am very familiar with nmol/l - that is the range used here.

30-50 is NOT the normal range for vitD in nmol/l so either you are misreading your report or the pathology company is reporting something else.

I have quoted you ranges not just from pathology companies in Australia but also from the vit D council, plus from the very considered articles on vit D by the nutritional scientist Chris Masterjohn.

I haven't missed the point of your post. I was simply suggesting that if you understood the normal range better you might not be so concerned.

Maybe you just have very efficient vit D metabolism - there is a wide range of responses possible at the VDR.
 
Last edited:
Messages
83
Location
Kent, England
I am an Australian and am very familiar with nmol/l - that is the range used here.

30-50 is NOT the normal range for vitD in nmol/l so either you are misreading your report or the pathology company is reporting something else.

I have quoted you ranges not just from pathology companies in Australia but also from the vit D council, plus from the very considered articles on vit D by the nutritional scientist Chris Masterjohn.

Maybe you just have very efficient vit D metabolism - there is a wide range of responses possible at the VDR.

That is the normal range quoted-and no, it's not optimal. How many national healthcare services understand or advocate optimal vitamin D?

Again - my post is not about what optimal ranges are, or how they're measured-but how I reached that point with no sun and no supplementation.
I had next to no vitamin D for a whole season to metabolise - and limited prior to that as I live in UK. Our bodies are finely tuned and this does not make sense.
 

alicec

Senior Member
Messages
1,572
Location
Australia
Again - my post is not about what optimal ranges are, or how they're measured-but how I reached that point with no sun and no supplementation.
I had next to no vitamin D for a whole season to metabolise - and limited prior to that as I live in UK. Our bodies are finely tuned and this does not make sense.

You are trying to convince yourself there is something wrong with your vitamin D levels. Well possibly there might be, though I haven't come across anything definitive that would support the notion.

There are alternatives you should consider before seeking further investigations.

There is a lot of natural variation in vit D levels, hence the need to understand the normal range. Some of it is genetic, some is environmentally based.

Here is a twin study trying to understand the heritability component.

The natural range of vitamin D measured in winter was 34.25 - 139.25 nmol/l. The study found that 70% of this variability was due to genetic factors.

In summer values were slightly higher and variability was entirely determined by environmental factors.

I am suggesting you consider that your result is within this normal response and is likely to reflect your genetic make-up.

An alternative possibility is laboratory error. Vit D tests are notoriously inaccurate. A repeat test could rule out this possibility.

If you are still convinced there is something wrong, then ensure you have calcitriol (1,25 diOH vit D) tested along with the normal vit D test (25 OH vit D), and things like PTH and ionised calcium.
 

Hip

Senior Member
Messages
17,824
One thing which showed up, it may not be clinically significant but was unexpected, was that I had a relatively high serum vitamin D levels.

My level was 95 nmol/L (range 30-50)

Was the testing lab that performed this test a reputable organization, like say the NHS?

According to this article, the safe upper limit for blood levels of vitamin D is 150 nmol/L (= 60 ng/ml).

Higher than that, and I think you would have hypervitaminosis D, which can be a sign of a number of diseases (listed here).
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,995
Dairy is typically fortified with vitamin D (At least it is around here)

Low vitamin K is a possibility-although I find it unlikely given my diet.
I agree, being vegetarian and assuming you eat plenty of vegetables means your K1 should be excellent, and the body purposely only absorbs a small amount, its has been artificially bypassed and there was problems (i forget the details)

Honestly i think this has nothing to do with your condition
 
Messages
15,786
My query concerned my levels in spite of no sun or supplementation.
The sun and supplements are far from the only sources of Vitamin D. In addition to a wide range of fortified foods (including orange juice, dairy, dairy substitutes, & cereals), there are also meats, cheeses, fish, liver, eggs, and mushrooms.
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
What an extraordinarily rude and unhelpful response!
The range and measurements are correct and taken directly from my results sheet.

I also didn't like the tone, but the point about the reference ranges could have merit.

30-50 is a usual normal range for Vitamin D in ng/ml, but the unit of your actual reading is in nmol/l, so this doesn't really fit together.

But: The conversion factor between nmol/l and ng/ml is 2.5, so 95 nmol/l is about 38 ng/ml and that is still high given the lack of supplementation, low intake otherwise and low sun exposure. For example, without supplements, I had 16 ng/ml last November.

I agree with @alicec that a lab error could be possible (given that they obviously didn't get the units right).

And I also agree with your doctor that 38 ng/ml (=95nmol/l) is definitely no toxic level, and if your calcium and phosphate readings are normal (even lower bound), it is very unlikely that Vitamin D toxicity or too much of it causes your symptoms.

Something could be wrong with Vitamin D metabolism, e.g. a genetic thing or something like that, but as far as I can tell, that would be exceptionally rare. And it probably would cause other symptoms, especially those associated with high or low calcium levels. I know it's not very helpful, but I think the only way to find out would be to do the tests I mentioned above. Everything else at this point is speculation because your lab test is old and perhaps there might be something wrong with it (at least the units definitely don't fit).

I don't want to distract from the topic, but given that you obviously have a CFS-like problem, did you check the usual suspects, e.g., Epstein-Barr and other Herpes viruses?
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
The sun and supplements are far from the only sources of Vitamin D. In addition to a wide range of fortified foods (including orange juice, dairy, dairy substitutes, & cereals), there are also meats, cheeses, fish, liver, eggs, and mushrooms.

Apparently champignons generate huge amounts of d-vitamin, even after picked, when exposed to the sun for a few minutes. Though that was cool
 

alicec

Senior Member
Messages
1,572
Location
Australia
I also didn't like the tone, but the point about the reference ranges could have merit.

so 95 nmol/l is about 38 ng/ml and that is still high given the lack of supplementation, low intake otherwise and low sun exposure. For example, without supplements, I had 16 ng/ml last November.

Well I didn't like the tone of the extreme over-reaction of the original poster, particularly when I was trying to suggest she was worrying unnecessarily. So what.

Perhaps I was exasperated that with so many serious problems to contend with in this disease, people are looking for problems where they are unlikely to exist. I'm sorry if this offended anyone.

I'm pleased you at least partially appreciate the point of the reference range, but you are perpetuating the notion that there is something abnormal about vitD levels in the mid-range (the full normal range in ng/ml is about 20-120) in winter without supplementation.

The whole point of a normal range is to show the normal variability in a population. Very few of the people whose results are included in the range are actually supplementing vitD. Some of them just naturally have high levels.

The recommendations about optimal levels don't say there is anything wrong with the high end of the range, just that there appears to be no advantage in having the higher levels. In other words, if you need to supplement to achieve reasonable levels, getting to mid-range is fine, but if you naturally have high levels, this is not a problem.

Vit D toxicity occurs at levels >375 nmol/l or 150 ng/ml.

As the study I linked shows, natural unsupplemented levels in winter in the study population ranged from about 34 nmol/l (13.6 ng/ml) to as high as almost 140 nmol/l (56 ng/ml). Most of this variability was found to be due to genetic factors.
 
Last edited: