Vitamin D deficient...

[lizp28]

I have recently read that a lack of Vitamin D in the system really affects those of us with Lupus. I had a Rheumatologist appointment a couple of weeks ago and asked her advice as I have so many flares especially during the winter and queried whether I could be low in Vitamin D. She is the first Rheumatologist who agreed to a blood test to find out and low and behold I am deficient! Now starting on a course of Vit D so keeping everything crossed! If you look up on the net it clearly states that lack of Vit D really affects not only autoimmune diseases but others too.

Urging you all to ask for a blood test to check on your level of Vit D!!!

Love to you all

Liz x

[suki65]

hi do you take statins i have done on and off for 2 years my vitamin d is low 17 they want it up to 25 and now i take vitamin d and calcium together the statins have made my muscles ache and sore check this out youtube.com/watch?v=MN7BoE8...(Not working as expected?)

I now intermittent fast articles.mercola.com/sites/... i eat 11am -7pm and this is working great for me without side effects

[lizp28 in reply to suki65]

No..not on statins..only Plaquenil but find it really interesting that so many of us have low levels of Vitamin D which clearly has an affect on us.

[gabs in reply to suki65]

Thank you so much suki65 for sharing this with us. My husband has had some really bad affects with statins and this clarifies exactly what we have ourselves concluded that they do us no good at all in fact they cause further problems. I think this video will get quite a bit of airing once it starts to get around as we have a number of friends suffering similar problem with statins. Thanks again. Gabs.

[suki65 in reply to gabs]

If he has muscle or bone weakness i an looking into my b12 i have been told its normal but im going to find out what the level is as there is advice differently on this and i have read that statins can also add to b12 deficiency ,200-900 is what some say your levels should be but i have heard on dr biffas if its below 450 then its too low ,i am also trying ubiquinol at the moment as this is for your bones if you are aged over 40 ,below 40 and its called coq10.

i dont want anyone else going through what i have

[SarahHeney]

My level was less than 14. The 20, 000 units of Vit D made a dramatic difference to my bone pain and fatigue. I remain on permenant maintenance dose of 800 a day. We should all be given it as standard as we cant go in the sun.x

[lizp28 in reply to SarahHeney]

Hi Sarah,

Yes mine is the same so hoping I will see some benefit as I dread the winter when I pick up every cough and cold going not to mention being asleep most of the time anyway!

I too gave up my career, Sales Manager for a luxury tour operator and I now realise that I stayed reasonably well in the winter as I was abroad most of the time.

Hope you have a good and pain free weekend.

Liz x

[SarahHeney in reply to lizp28]

Similar story to mine. Life changing doesnt cover it. If you want to FB friend me I am Sarah Heney x

[lizp28]

Ah I don't do facebook Sarah...what a shame..not sure how safe it is to put email address on here?

Liz x

[Herb]

If you live in the UK or North of the Equator it is likely that you will be deficient. It is because the main source of vitamin D is sunlight and the suns rays are not long enough. If you are dark skinned or stay out of the sun or use sun screen you will also be at risk.

My specialist nurse told me they test people in the clinic and a lot of them are deficient. Fortunately I have been on supplements for a number of years because I have low bone density due to steroids. She tested me and it came back normal. I am fairly sure it is only normal die to the supplements, calcichew d3 forte.

[saranne in reply to Herb]

Just wanted to add that I was low in Vit D and given calcichew d3 forte but they made me feel sick i hated chewing them so often missed the dose! Finally said something and found that I could have Adcal-D3 Caplets to swallow instead! Much easier, I thought that may help if anyone else dislikes the chewables. Also to give the levels an initial boost I took very high dose for a short time which worked.

[Zoezoe752 in reply to saranne]

Aw great advice I miss my calcium chews all the time as they make me gag deffo goin to ask

[Loopylooby]

I too have an extremely low vit d level. I have to have it injected monthly as otherwise if be on a ridiculous amount every day and apparently it would be too many tablets to take. As the injection wears off I see a big difference in my symptoms as they get much worse! Xx

[chrisj]

My rheumatologist did blood tests for vit D levels earlier this year after I complained about muscle fatigue, aches and being shorter of breath than usual, it came back low. I went for booster capsules once a month for 4 months at the hospital and then she prescribed daily doses of Adcal which will probably be permanent as my body doesnt make vit D any more..according to the specialist nurse.

I've read that northern areas of England tend to have lower levels. When I was little my mother took me to see a doctor - dont remember much about it but I recall my mom talking to family - and his advice was that I would benefit from living in a warmer country. My parents considered emigrating to Australia, even got the app forms but nothing came of it..think it had to do with dads mental health. I've often wondered how my life would have been if we'd gone...

[lizp28 in reply to chrisj]

Yes Chris I think we should all move to warmer climates! I lived in Canada for 10 years which probably hasn't helped...I have Sjogrens too..dry everything!

Liz x

[chrisj in reply to lizp28]

..and me Liz...I'm a yorkshire lass born and bred take care xxx

[JacquieCD]

I have a very low Vit D level too. I take calcichew, but it got so low last year I was given an injection. The level went up for a while, but it is on the way back down again. I may have to have injections regularly if the calcichew is not enough. I am originally from Scotland, but now live in Bedfordshire, which is the sunniest and driest area. I am allergic to the sun so rarely go outside and if I do I keep covered, but still suffer. So with Lupus I dont think it matters where you live if you cant sit in the sun. Lots of others I am in contact with on Facebook all say the same all over the world about low Vit D and Lupus.

[caninecrazy]

I did ask my GP about my vit d level being a factor in making me feel worse, he wouldn't do a blood test as it wastes NHS money so gave me a sucky,chalky orange flavoured tablet. I took them everyday for a week but they made me vomit so stopped taking them. im taking vit d suppliments from Holland and barrett but not in that high dose. thankyou saranne I will ask for the tablet you've been given as I so want to feel a bit brighter

[madmagz]

Hi I had a pretty low Vitamin D due to keeping out of the sun so much but now that I am on steroids and taking a joint calcium and vitamin twice daily things have improved, it is not something that is often thought of so thanks for bringing the subject up it is worth getting checked we all have enough problems without getting rickets too.

Hope you carry on doing well

Madmagz x