Reading through various posts, particularly recently I have seen that lots of people are being told by their doctors to take vitamin D supplements, or calcium supplements with vitamin D in them. While this is normal treatment for people with low calcium levels in normal, healthy people, science is starting to show that this is WRONG, WRONG, WRONG for people with active sarcoidosis.
There are a few posts on this site which go into detail about this, but they tend to be pretty heavy & scientific and a bit off-putting.
But this is important stuff for us to know, so here's a short and hopefully simple version of what they're finding:
Basically, there are two forms of vitamin D - the one doctors usually test for is 25 hydroxyvitamin D (calcidiol), the other one is 1, 25 hydroxyvitamin D (calcitriol), which is the one most doctors don't often test for.
In normally health people, calcidiol gets converted into calcitriol in the kidneys and nowhere else, so a low calcidiol level implies a low calcitriol level.
In active sarcoidosis, cells within the granulomas also convert calcidiol into calcitriol. This means that for people with sarc, the conversion is not just happening in the kidneys, but in other parts of the body as well.
Because it's being converted in so many more places it happens much faster than normal, so our calcidiol levels will be lower than normal .
This also means that we end up with much higher than normal calcitriol levels.
Calcidiol helps the body absorb & use calcium, which is why it's in calcium supplements and is often added to milk & dairy products.
However, calcitriol actually "sucks" calcium out of our bones & back into our blood stream.
The end result: low vitamin D levels, high calcium levels. If our doctors do urine calcium tests, they would find unusually high calcium levels, because the kidneys are trying to get rid of the extra calcium.
One extra: Because there is extra calcium in our bloodstream, sometimes our kidneys can't work fast enough to get rid of it & it builds up, forming kidney stones. Lots of people with sarc suffer from kidney stones, but the link between sarc & kidney stones is often unknown or not even considered.