Vasculitis UK
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Vitamin D

Vitamin D has been flagged up as low on my Mums recent blood test.

She gets as much sun as possible but this year has been pretty poor as we know.

I think she will need a supplement of some sort but I'm interested to know if vasculitis, pred or something else is the likely cause of this deficiency?

She eats an egg every day and lots of red meat......

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Hi luggsey,

Vit D deficiency is very common in auto immune disease. I was deficient at first and various polls on here have indicated that lots of us are ( well worth asking for her B12 to be checked as well ).

I stay in Scotland where most of the population are thought to be deficient! There is no consensus as to whether low Vit D drives auto immune disease or is a consequence of it. The majority of our Vit D comes from the sun, not food unfortunately. It's possible to eat a very balanced diet and still be deficient. Some types of Vasculitis ( especially Behcets ) appears to interfere with the absorption of Vit D.

If her levels are very low then best to get a high level supplement from the GP as it may be that the over the counter ones won't contain a high enough level to reverse it.

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I can't download this whatever it is?

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It's an academic article on the role of Vit D in auto immune disease. Not sure why you can't download it as have just clicked on the link and managed to.

There is a Vit D injection that patients who are severely deficient can get to boost their levels ( usually if their Vit D is under 10 ). It's expensive and many Dr's don't know about it.

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Worked for me too - thanks, nice bit of reading for this afternoon!

There are also high dose oral versions - Dekristol capsules - which have to be ordered from Germany but are approved by most specialists and some GPs for prescription.

But the number of GPs who still dismiss low vit D levels amazes me.

My daughter has recently done a research module in her pre-hospital emergency medicine MSc on vit D and its role in asthma. Very interesting...

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It isn't uncommon to find a low vit D in patients with an autoimmune disorder - which vasculitis is. It isn't known though whether than is cause or effect - does the low vit D contribute to the development of the autoimmune disorder or is the result of the illness.

However, the majority of people in the UK have less than optimum vit D levels - what was thought to be "normal" in the past has now been realised to be the levels found in a population who simply don't get enough sun for various reasons. That sun has to be between 11am and 3pm between May and September - the sun's rays must strike the skin at a fairly steep angle to trigger the switch that makes the process happen. Any sunscreen, makeup or clothes reduce the amount that can be made. So does any suntan that has developed. A Factor 8 sunscreen reduces the amount of vit D that is made by over 90%, a suntan is equivalent to a Factor 12 sunscreen. If what you produce at age 20 is taken as 100%, by the time you get to 70 you are down to about 25% production just because it doesn't work so well (like lots of other things as we age). As you age you also tend to spend less time in the sun and wear more clothes when out there.

Less than 10% of your vit D needs can be covered by diet - very few foods contain vit D at all. Strangely, beef doesn't have a very high level of vit D whereas lamb and veal may do though not necessarily, it depends on the fat content of the meat as vit D is fat soluble. Offal has far more - but is rarely eaten these days.

vitamindcouncil.org/blog/vi...

Egg yolk has some - but to get your daily needs you would have to eat something like 17 eggs! Wild oily fish is fairly good - but you would need about 1/2lb 3 times a week - and most oily fish sold in supermarkets is farmed, much lower in vit D.

Mushrooms are good - especially if they have been exposed to sunlight - and that doesn't happen with the supermarket variety!

And while you will read all over the place on the internet that orange juice and milk are fortified with vit D and so are good sources - that is restricted to the USA. During and soon after WW2 they were fortified in Europe as well but an accident with milk whereby small children ended up being overdosed led to it being stopped. Margarine is fortified, but only to the same level as butter is naturally as a fat. There is maybe some in cereals - that I'm not sure about.

So - yes, your mum will need a supplement. How much depends on how low her level is. But the usual supplements handed out by doctors with 400IU per tablet (Calceos or AdCal) are not enough to raise a low level, they MAY maintain a good level but even that isn't sure. If her levels are really low the accepted procedure is to give 60,000 IU per week for 8 weeks, either as a single dose or a 3x 20,000 IU per week and then recheck the level. It may take a couple of such course if she is very depleted - you have to fill up the body stocks in the tissues before it spills over into the blood so it can be measured. It all depends on how deep that black hole is!

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Thanks, that's useful information, I didn't realise it was hard to get the level back up.

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If your Mum's blood test showed low vitamin D she should have been prescribed a supplement by her doctor unless it was not that low, as it seems the NHS often will not prescribe if the blood test reading is over 25 in some areas. However if she is taking pred they should have given her a supplement anyway. Do you know what your Mum's reading is? I believe that around twenty five per cent of the UK population are now supposed to be vit D deficient. It has got a lot worse in the last twenty years or so. Probably all those kids sitting inside with their electronic toys and not outside playing.

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I know her vitamin D level has been borderline for a while, on her previous blood test it was just above the value when the lab prints a warning flag on it so it must now have gone below that?

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In some areas they will tell someone with a result in single figures to go to the chemist and buy some! Part of that is because I don't think they know how much it takes to get it up to optimum levels!

Yes - electronic toys, fear of "nasty people" encouraging parents to keep the kids in, Factor 50 sun cream on any exposed skin - I could go on.

In our region, level with Turin where you are theoretically able to make vit D all year round. it is thought that 80% of the population is deficient. Yes - eighty percent!

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My Mum took every opportunity this year to catch the sun and she goes visibly tanned in no time at all.

That didn't seem to help though?

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It doesn't mean the "factory" in the skin was producing vit D - and if you read my post above again you'll see that as the suntan developed - the amount of vit D made would have reduced. It's a complex process - and all sorts of things can interfere.

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Yes, I understand what you said, I was conforming it!

:)

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Its almost impossible to get enough Vit D through sunlight without bare skin being exposed and if you have auto immune issues and you are on a 'hiding to nothing', so tablets are often the best way.

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I had low Vit D (showed up by aches and pains and feeling grim). It took 40,000 units per day for 10 days, then another Vit D test two weeks later, result another 10 days on 20,000 units per day - another blood test - Bingo.

I have now take 1,000 units per day recommended daily dose of 1,000 units per day (£5.00 for 90 days supply from Boots) and have done so for the past five years, it has never gone down for all they test it every three months for the first year, then six monthly intervals and then they only do it, if I need a blood test for another problem.

Low Vit D can sometimes only be dealt with at Secondary Care, however some Trusts have devo;ved it down to Primary Care (GP level).

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Whilst been off sick I was diagnosed with hypersensitivity vasculitus and after the many blood tests, they found I was low in vitamin D and too much calcium. I have now also been diagnosed with hyper parathyroidism which usually affects older post menapausal women, which I'm not lol. I'm not saying this is what your mother has got but may be worth looking into and see if she had her calcium levels checked.

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