HOPE!!! My test shows very low Vitamin D

Carlos

"Vitamin D" refers to several chemicals. You were tested for an inactive precursor, 25-hydroxyvitamin D, or 25-D for short. This is by far the most commonly assayed form and is expressed as ng/mL.

The active form, calcitriol (aka 1alpha,25-dihydroxyvitamin D, or 1,25-D for short) is rarely measured and is expressed as pg/mL.

The kidneys convert the precursor (i.e., 25-D) to the active metabolite (i.e., 1,25-D) in a regulated manner in order to maintain endocrine (systemic) levels. But there are also "extra-renal" sources of hydroxylase activity, most notably in macrophages.

In sarcoidosis and Crohn's disease, the macrophage in granulomas convert so much 25-D to 1,25-D that the spill-over of 1,25-D produced at the local level can significantly increase systemic levels of 1,25-D. Some people believe that inflammation has this general property, to varying extents. Here is just one paper discussing the ability of macrophages to convert 25-D to 1,25-D:

http://tinyurl.com/4jllq


Why is your 25-D low?

Perhaps your illness causes you to stay in doors more than other people and you live in an area that gets little sunshine. You therefore acquire less vitamin D precursor. In that case, the low 25-D may not be playing a role in your disease.

Perhaps, your disease results in part due to the loss of 25-D acquisition. In this case supplementation would help. (Supplements provide the precursor form of vitamin D, not the active form).

The third scenario is that your 25-D is low because it is being consumed by a lot of "extra-renal hydroxylase activity"--that is, by inflammation. In that case, feeding the inflammation more substrate (i.e., 25-D) may not have any noticeable effects, may make you feel better due to the so-called "immunosuppressive" effects of 1,25-D, or it may give you hypervitaminosis D symtpoms as your systemic 1,25-D levels spike.


This paper claims to show evidence of inflammation in SAD:

http://tinyurl.com/483ct


It could be useful if you would get your 1,25-D level checked. If it is high, then that would indicate that your low 25-D is the result of inflammation.

There is some dispute over what constitutes healthy levels of "vitamin D" but the Merck manual:

http://www.merck.com/mrkshared/mmanual/section1/chapter3/3d.jsp

says,"In healthy persons, levels are 25 to 40 ng/mL (62.4 to 99.8 nmol/L) for 25(OH)D3 and 20 to 45 pg/mL (48 to 108 pmol/L) for 1,25(OH)2D3".

Since the active form is unstable it is fairly important that you request that it be shipped frozen (otherwise, some of it will degrade and will give a falsely low result).

I'm very interested in how you feel following supplementation.


Matt

Carlos

I am sympathetic to your plight. Very sympathetic. And I don’t mean to tax your strength.

The simple answer is that I don’t know if you’ll feel better or not. My emphasis is more on the interpretation of your 25-D value and less on the possible therapeutic benefits of supplementation. What I don’t want to have happen is for you to supplement, feel no effects (or even feel worse) and think your 25-D lab work was irrelevant. The potential importance of that information is not dependent on you feeling better following supplementation. If you feel worse, the 25-D information may still be useful.

Have you had your calcium measured? If it is near the high end, then this would suggest that your 1,25-D may be elevated. That might help in getting your doc to order the 1,25-D test. On the other hand, normal calcium levels do not preclude a high-normal 1,25-D level. So ideally, 1,25-D should be measured either way.

Here is more complexity that you can ignore if you are too sick to read it (but do read the hypervitaminosis D symptoms so that you will be prepared to recognize them if they occur):

You cited the Mercola web site, which says supplementation is contraindicated in sarcoidosis, tuberculosis and lymphoma.

The macrophages in granulomas (sarcoidosis and tuberculosis) will just take the supplemented vitamin D precursor and convert it to the active metabolite. This can spill over into systemic circulation, sometimes becoming high enough to cause hypercalcemia (and other problems). Crohn’s is another granulomatous disease that Dr. Mercola should cite:

http://www.kissei.co.jp/mnews/gynecology/news/200409/20040907epid003.html

Notice that this study did not measure the precursor (which is what you measured).

Here is a paper discussing the issue as it relates to lymphoma:

http://tinyurl.com/5c6fe


This paper uses the ratio of 1,25-D to 25-D as a measure of disease activity in RA:


http://tinyurl.com/6v6c5

The use of a ratio implies the importance of the dual effect of hydroxylase activity: it not only increases 1,25-D, it decreases 25-D.

And here is a report of an RA patient that experienced elevated 1,25-D and concomitant hypercalcemia following vitamin D supplementation:


http://tinyurl.com/66b9r

And this was resolved with the immunosuppressant, prednisone. That is, when this patient supplemented with vitamin D (i.e., the precursor) his inflammation appears to have been extensive enough that it converted enough of the precursor to the active form that when the active form leached out of the sites of inflammation, it unduly increased systemic levels.


The point of all this is that a variety of types of inflammation (defined here has the presence of lots of macrophages) may lead to enhanced depletion of 25-D. So if 25-D is low, it may reflect a high level of 25-D to 1,25-D conversion, not inadequate exposure to sunlight or inadequate dietary consumption of “vitamin D.” This is why it can be helpful to get both 25-D and 1,25-D checked.

I’m not saying that supplementation won’t make you feel better. Maybe it will, maybe it won’t. For selfish reasons, I’d like to know what the results are if you try this. Either way, I do think that your low 25-D is a potentially important clue. Even if you feel better, the interpretation may not be straightforward. Here, for example, is a report of a sarcoidosis patient that hints at the possible complexities:

http://www.outsidein.co.uk/forum/viewtopic.php?t=96

Is it a coincidence that this person had sarcoidosis and putative SAD? Again, sarcoidosis involves vitamin D “dysregulation.”

I’ve read lots of accounts (on various forums) by people with fibromyalgia, CFS, lyme disease, sarcoidosis, etc., that feel much worse during dark, cloudy weather.

If you supplement with vitamin D, just keep in mind what the symptoms of hypervitaminosis D are. See “overdose symptoms”:

http://www.wholehealthmd.com/refshelf/drugs_view/1,1524,756,00.html

If you already experience any of these signs and symptoms, then you may already be too high in 1,25-D.

I am definitely not trying to talk you out of supplementing vitamin D. I simply want you to realize the potentially confounding issues so that if things don’t go as planned a useful interpretation can still be made.

Matt

It may be worth getting a calcium blood test done in case you have Hypoparathyroidism in which calcium and VitD ( and Parathyroid hormone) levels are often low.

The normal level of 1,25D is between 35-45, which confirms there is no systemic inflammation caused by L form bacteria. Without supplementation normal 25-D level is between 14-18. I have had my 25-D level checked and it is 12ng/ml which is a bit low. My doctor cannot check the 1,25 D levels because its not a standard test under the NHS (she says). Is there a lab in the UK where I can have this level tested. I believe you have to send it frozen to the lab to be accurate. Kind regards, Gin

Carlos
Please let me know if you got diagnosed and treated?
x

May I suggest you look up a Boston Doctor named Hollick - he has countless articles online and also some usperb lectures on Youtube.

He is not into this to make money but to help people and he has had some remarkable case studies of very ill people get better and even well on doses of Vitamin D.

http://www.youtube.com/watch?v=Cq1t9WqOD-0&feature=channel