Low Vitamin D, Calcium Supplements made simple

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.

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Thanks RuthFromOz!
This certainly does help clarify things for me a bit. I have been reading the posts also and thought I had a decent understanding but then something else will come about that seems to contradict what was said earlier!
And if that isn't enough, I heard a radio broadcast the other day where vitamin D was discussed that seemed to put a twist on what I thought I already understood!
All in all, I have learned a lot and all of it has fueled my desire to learn more. It seems to me that a lot of the confusion lies within the 2 different types of vitamin D.
We need to be sure of which type we are being tested for before interpreting and acting on the results.
And make sure we are on the same page as our doctors (or should that say, make sure THEY are on the same page as US!)

Thanks again,
Pam

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Hi guys,

I am the one responsible for confusing everyone with the medical terminology.

Ruth is correct. I may add another rider. In normal people, including those who have osteoporosis, there are hormones and enzymes produced in the kidney that regulate the amount of calcidiol produced. This is why normal people can bake on a beach all summer long and never be affected by high D levels. This is because excess calcidiol made by the kidneys can be mopped up by a kidney-made enzyme, therefore the levels in normal people NEVER get out of hand. But in sarcoid, the calcidiol production has already been curbed by normal bodily mechanisms. This is why sarcoidians test low for vitamin D!!!!! This is not a deficiency in most cases (though it can be, and this is why one vitamin D test is totally inadequate to assess the situation). The lowness of the calcidiol level is due to hormonal shut down of production in order to prevent your kidneys converting the calcidiol into calcitriol. Because granulomas are already producing too much, the body tries to stop making any more via its usual route through the kidney. And because the kidney has no role in the production of the granuloma produced vitamin D, its hormones and enzymes cannot control it. This is why taking vitamin D is dangerous, because it is also coming from an outside source and will go through the normal kidney channel and add to the vitamin D being made by sarcoid granulomas. Therefore doctors must test urine, both vitamin Ds, AND parathyroid hormone before they can identify whether you have a deficiency or not!!!!

Warning : BISPHOSPHONATES ARE ALSO DANGEROUS!!!
Another drug often given to people with calcium and D problems (including sarcies) are bisphosphonates. These usually are Boniva, Actonel and Fosamax. Now this is very, very, very important. These drugs were devised to keep calcium inside the bone structure. In our bones, we have two kinds of cell - osteoblasts which form new bone - and osteoclasts which break down old bone. Left to nature, our skeletons are renewed every decade of our lives.

However, bisphosphonates have caused numerous problems for people. Bisphossy jaw or osteonecrosis of the jaw is one problem for which there are class actions against Merck the makers. Another problem is a new kind of leg fracture which only occurs among people taking the drug. It is not normal to keep bone from breaking down. My aunt has had both hips replaced on three occasions (we are talking eight separate operations and special tendon reconstructions) because she had osteoporosis and had been taking bisphosphonates for ten years prior to her first surgery. The bisphosphonates keep calcium in the bone and do this by preventing old bone from breaking down. When old bone cannot be broken down, new bone cannot be made as speedily. Therefore, my aunt's hip replacements were all failures because new bone couldn't knit around the rough surfaces of the prostheses. She found out about all this the hard way. They now tell people who are having joint replacements to stop taking the drugs.

Even so NEW research has discovered that bisphosphonates keep calcium in bone by actually KILLING the osteoclasts which break down old bone. This leaves only osteoblasts which can make new bone, and the bone has to be made from all new materials, which are rarely as good as what was already in place. Therefore, don't get sucked in to taking bisphosphonates either. They are poisoning bone cells, and no wonder people are having unexpected and unusual fractures. I very much doubt these drugs will be on the market in two to five years time.

Pris

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Hi Pris,
Thanks for putting your hand up, but let me reassure you, you're not the only one sharing their knowledge in ways that can be a little overwhelming to others. I know there's a lot of people (myself included obviously) who like to do extra research into this "thing" we live with. Understanding some of that stuff can be hard enough for those of us with medical terminology knowledge, but when I found myself explaining the calcidiol/calcitriol stuff to a nurse I work with, I realised how much harder it must be for non-medical types to wade through all the medico-babble in the research journals, etc.

Thanks for the extra detail on out-of-control kidneys and the great info on "dem bones". Having decided to avoid supplements because of the Vit. D issue, I hadn't researched any further, but now you've sparked the interest, I'll have to have another look.
It'll be helpful to my nurse colleague as well - her mum has sarc & is on calcium supplements (she's 70+). Fortunately her sarc has been in remission for years, so Vit. D isn't an issue for her at the moment.

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I went to an endocrinologist and gave him an education on this subject to the point he asked me to come back so he could research and confirm my knowledge. He looked pretty sheepish telling me I was right. Drs are not omnipotent. We need to educate them about our conditions at every point along the way. I can't believe there are people with Sarc taking Vit. D.

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Thanks RuthfromOz. I too have had to stop a doctor from prescribing vitamin D supplements. It was by chance that I had come across an article about this. When I went for my assessment at the hospital., the junior doctor was adamant that I should be on the supplements, till I pulled out the printouts that I had carried with me. I was then told that I would be contacted by the consultant in the department- which was Rheumatology. I had then to chase up the consultant who had not bothered contacting me. I was eventually referred to another hospital, because even the consultant was not too sure of my position. Can we ask the team running this website to send out a bulletin to medical councils to inform them of this?

I am at present on fosamax and am planning to bring this up with my doctor. Thanks to all who have taken the time and effort to help each other! Let us carry the flag wherever and whenever we can. I am still mooting the idea of an informal survey compiled by us. See my discussion- ‘Is this where it all begins’ on the 13th of May.

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My 24 hour urine test was normal but 25 d was high. There is scarring in one kidney on ct scan. I just am starting with getting my 21 year old daughter a diagnosis and they advised d based on d3 level of 30! If I hadn't been reading, I wouldn't have known to tell them how dangerous it was. She had a trip to er after 4 hours at the lake. She is in denial, too, about sun because she likes it.

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HI
RuthfromOz
If you can YES get the VIT. D3 for you ,,,1000mg.; take one a day along with Calcium with D and Magnesium, WHY because not all of us get enough SUN and the D3 is the key to the no sun vit. FIND it in wal-Mart or another drug store, it is also heart healthy,,,try it,,PLEASE,,,Hugs Jeanne xx
jeannemjw@yahoo.com

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angeljeanne = angel of death. No offense, but that's the most uneducated posting ever.

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Ruth and Priscurl:
An update on my situation -- until recently I have been enduring a nasty flare with breathlessness, lack of energy, night sweats, pain in hands. Have begun to feel better, in the meantime the doctor who prescribed Fosamax must have done some research when I gave him pushback.
He sent me an email he wants me to take plaquenil and colchine so I can take extra vitamin D.
He gave me colchine once when I had chronic hives, it seemed to do the trick, but I wasn't crazy about the hair loss.
I would like to wait a couple of weeks get tested for the
D3 and the 125 OH D when the sarc is gone.
He is such a charmer he noted that he wished he had never tested those levels since most doctors wouldn't have.
By the way "feel better" means normal breathing, no night sweats, still get tired but am a woman "of a certain age".
Any input appreciated.
jean

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Pris and Ruthfromoz,
This past winter I took about 2 weeks of high dose Vit D because my rhummy insisted it can't cause kidney stones and my D was low. I had a few small ones at that time. Well fast forward a month and one got stuck trying to pass. I ended up in the ER and had emergency surgery to remove that stone. Then the other side has a big one they want to blast and a big ole cyst also. I went back to my rhummy with your printout and he said this was not a proven fact. If he were not the only one in town I would fire him. So no more Vit D for me. My PCP was much more receptive to the information and has agreed to send him a note telling him no more. My Prednisone is only 4mgs and not high enough to control those large doses. I did not ache as much on the Vit D but I will take the pain over surgery any day.
Now that summer is here I will get some natural D when I go to the store etc. I will keep it low dosed if I can.
Bunkie

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Angeljeannie, it looks like you've been reading the article by John Jacob Cannell of the Vitamin D Council, claiming that 70% of Americans are Vitamin D deficient due to lack of sun. This article is about cholecalcidiol which the article's first paragraph defines as Vit. D3 made from animal products. You may have overlooked the (very) brief sentence that states that "Persons diagnosed with sarcoidosis, other granulomatous disease ... should not take vitamin D..."

My original post summarised information gathered from a number of recognised medical journals and textbooks. I've listed just a handful below so people can show their disbelieving doctors. This can be particularly helpful when dealing with specialists, who lose touch with stuff going on in "general" medicine & other specialties, e.g. Bunkie's rheumatologist.

Here's the references:

Therapy of renal diseases and related disorders
By Wadi N. Suki, Shaul G. Massry

Endocrine aspects of sarcoidosis.
Winnacker JL; Becker KL; Katz S, New Engl J Med 1968 Feb 22;278(8):427-34.

Isolation and structural identification of 1,25-dihydroxyvitamin D3 produced by cultured alveolar macrophages in sarcoidosis.
Adams JS; Singer FR; Gacad MA; Sharma OP; Hayes MJ; Vouros P; Holick MF, J Clin Endocrinol Metab 1985 May;60(5):960-6.

Vitamin D conversion by sarcoid lymph node homogenate.
Mason RS; Frankel T; Chan YL; Lissner D; Posen S, Ann Intern Med 1984 Jan;100(1):59-61.

The Protean Face of Renal Sarcoidosis
Gobel U; Kettritz R; Schneider W; Luft FC, J Am Soc Nephrol 12:616-623, 2001

All very heavy scientific stuff and some of it is not so new (New England Journal of Medicine 1968)! I hope some people find the list useful in educating their doctors - I am lucky enough to have a GP who recognises that I've done more research & become more knowledgeable about sarcoid than she has time to, and accepts that sometimes I can sometimes teach her stuff about sarc. I'm very, very lucky!

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My Vit 25D and Vit 1,25D have both been low, does that still mean that I shouldn't take D supplements? I started taking children's vitamins to get a smaller dose of Vit D....about 50 % MDR. But from what I hear you saying, taking a supplement won't help anyway, correct?
Thanks to you all for being here!!
~~Gale~~

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Hi Petlady
Nothing I've come across in my research has said anything about how or why both vit Ds would be low, or how to treat such an event. It certainly doesn't fit within anything I've read on sarc - but then this disease always likes to throw in a curly one to keep us on our toes!
I must admit defeat on your case, it's well beyond my knowledge. Maybe Priscurl could provide some guidance...

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Hi RuthfromOz -In which state do you live? -I'm in Perth Western Australia-my email is du_mes_ad@hotmail.com

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Hi Maiden69

I'm an "Easterner", from Canberra. There are quite a few Aussies here on the site, but I haven't seen very many from your side of the continent. I was almost starting to hope sarcoidosis had missed that part of the country, but obviously no such luck!

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