Should I take vitamin D supplements

[0105luppyabby]

As I have to wear Factor 50 every day should I start taking Vitamin D supplements as I don't eat many foods with vit D in every day so am lacking in this particular vitamin.

[PMRpro]

There are very few foods with a vit D content that could make up for not getting vit D from sun anyway. Anyone who has limited exposure to the sun - medical or merely where they live being too far north for effective sun exposure all year round - needs to take appropriate vit D supplements. I live in northern Italy where you would think we are fine - but the local osteoporosis guru says we should take 2000 IU vit D a day during the winter!

[kulie13 in reply to PMRpro]

My GP insists that I take 1000 IU’s daily all year. Has to be the right kind so check with your own GP - but apart from a big dose jab if you are seriously deficient it won’t be available on prescription. I take D3 from Holland & Barrett.

[0105luppyabby in reply to kulie13]

Funny you should should mention D3 from Holland & Barrett, was off to get some later as they are half price at the moment, can't see it doing me any harm!!!

[0105luppyabby in reply to kulie13]

I have just brought 400 D3 tablets from Holland and Barrett as were half price, should see me through to 2019!!!!!!

[Paul_Howard Partner LUPUS UK]

Hi 0105luppyabby ,

It is worth discussing this with your GP. Most people with lupus have low vitamin D levels, both as a result of decreased sun exposure and due to lower levels generally being observed with the disease. Your GP may wish to do a blood test to check your levels and prescribe a suitable supplement.

[0105luppyabby]

Thanks, will do!!

[chrisj in reply to 0105luppyabby]

That advice from Paul is the best you'll get

[Joy_1]

Hi

I am a food scientist. And yep it is very difficult to get all the vitamin D you need from your diet. Hence foods like cereals are fortified with vitamin D.

For those of us with autoimmune conditions, we need even more vitamin D.

I need to take 2000IU's a day to keep me in the 'healthy zone' despite having a good diet.

However, I do ask my Rheumatologist to add the vit D test to my blood form on the odd occasion to make sure I am in the right zone as too much vit D is not a good thing either. By the way I ask the Rheumatologist not the GP as GP's are reluctant to do this as the test costs around £400.

[PMRpro in reply to Joy_1]

If you are in the UK the test does NOT cost "around £400". I know there are doctors who will tell you it costs hundreds, it is not true.

vitamindtest.org.uk/vitamin...

This site gives the details of a DIY test available from City Assays - the path lab at City Hospital Birmingham which does vit D testing for the NHS as well as privately. They have had to increase the price this year, as of April, but it is still only £29 for a single test. Buying 10 at a time they cost £24 - and 50 at a time, which is what a practice should be ordering, is even less.

There is absolutely NO excuse!

[Joy_1 in reply to PMRpro]

Well I am sure you are right PMRpro. Just as you say going on what my GP told me. However whenever I ask my Rheumatologist to run something he always does without any hesitation what so ever. So I will stick to that route.

I have to add though that not all testing is the same and sometimes cheaper tests can be unreliable and along with that reproduciblity is poor. Just speaking as a scientist and past experience of the 'testing' market as a whole.

[PMRpro in reply to Joy_1]

You are speaking to another scientist who worked in the NHS

My concern is all the other patients who should have their vit D checked - where their GP is lying to them too and they don't have a specialist to ask. There are testing offers I wouldn't accept - but one from an NHS lab is fine by me.

[Joy_1 in reply to PMRpro]

Yes you are right folk can be fobbed off by their GP.

However, my local hospital was complete pants and along with that so were their test results. Methodologies do vary as I learned when me and my autoimmune disease were moved to a teaching hospital outside of my area. But let us drawn a line under all that. I am sure across the board standards are good.

[0105luppyabby]

Thanks so it would be ok for me to take a Vit D Supplement and get a Vit D test at my next dermatologist appointment?

[Penguintaz in reply to 0105luppyabby]

Yes but let them know you are taking a supliment as it will impact your results or don't take it for a couple weeks leading up to you right test so it'll be your "normal" levels

[Lizard28]

I was told by my gp that the blood tests done at the hospital showed I was deficient in vit D. She prescribed theiCalD3 1000mg. She told me the labs will only let me get tested once a year, so now I'm not sure if I have to take them for a year or stop them after my 2 months supply are finished. I will have to call them. I hate taking them, they are making me gag, they are the chewable ones and seem to stay in my mouth for ages, are the ones from Holland and Barrett like this or just a swallow one?

[0105luppyabby in reply to Lizard28]

The D3 tablets from Holland and Barrett are tiny

[Lizard28]

I might swap, I think mine have calcium in them as well, but honestly, I have just taken one, missed them for a few days as I hate the feeling of them in my mouth. Now I feel sick, yuk, I think I will buy some, thanks for your reply

[chrisj]

My body doesnt make vitD any more, apparently its packed up..whatever it is thats supposed to work doesnt work, so sunshine is no good for me

I talked to my rheumatologist a few years ago about some difficulties I was having....muscle aches and pains, shortness of breath and fatigue were the main culprits and she said straight away it sounds like your vitD is low. They took blood test that day and asked me to take a 24 hour urine sample, which I did and took it back the next day

A short time later I was asked to attend hospital for capsules, think I went over a period of 2 months, they werent available outside of hospital..so a boost to the levels and then 4 caplets a day of Adcal which I'll take for the rest of my life. I would never buy them OTC, have always taken them under NHS supervision after a proper diagnosis, and they check the vitamin once a year when I go for Lupus checks. I've no idea what the cost is, never asked, never been told

[Gcart]

I am no expert but I understand that you have take K2 with Vit D so that the extra calcium your body takes up is directed to your bones and teeth , not soft tissue

[PMRpro in reply to Gcart]

You don't HAVE to take K2.

[jean85]

Hi luppyabby. I too have to wear Factor 50+ every day I also have to take Vit.D supplement even though I don't go out much at all in the sun.

Take care,

[Coffeetime]

You could ask if you can get these on prescription both my doctor and consultant are strong believers of Vitamin D and sunscreen with worst luck. I have been prescribed Vitamin D since I was diagnosed.

[Joy_1]

Just going on what the GP told me . Since the GP told me this I naturally assumed it was correct. Good to hear it's a lot cheaper!

[kulie13]

I can only speak about my own experience. When a blood test showed serious deficiency about 5 years ago I was prescribed a mega boost shot which was a dose for 3 months and it was given by my GP who does all my blood tests (although tests are requested by consultants). From then on, I was told to take a daily dose for the rest of my life, but because it was available easily over the counter I couldn’t have it on prescription (I’m over 60 so prescription is free). The version I take, 1000 IUs D3 from Holland & Barrett, was approved as the right strength and type. I’m slightly annoyed I have to pay for it, but I understand why, especially in light of recent NHS problems and announcement that anything available over the counter shouldn’t be on a prescription. If your GP surgery or consultant use different rules, that is our postcode lottery at work. Thanks to 0105luppyabby for pointing out how cheap D3 is at the moment - I went and topped up my own supply. I’ve had lupus diagnosed since 94 so have many regular blood tests. No idea why D deficiency wasn’t noted till recently but i have had lots of referrals and tests in more recent years so maybe it was just thrown in the mix. Ironically I don’t feel any noticeable benefit from taking them, I’m just following instructions. I think Norfolk NHS are brilliant and I feel very sorry for anyone who has unhelpful GP or Consult.