Should all Lupus patients have Vitamins and miner... - LUPUS UK

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Should all Lupus patients have Vitamins and minerals checked as Vit D deficit often missed?

Footygirl profile image
13 Replies

Hi

Following our talks on Vitamin D deficiency and how a lot of us find an improvement after we take regular prescribed doses, have any of you subsequently had a full screen of vitamin and mineral levels?

It just seems to me that if we sometimes struggle to get D checked, when we have our lack of exposure to the sun as a causal factor, who knows what else may be depleted and giving us symptoms?

I don't know which element affects what, but if zinc has been linked to hair problems in general, for example, could it not be linked to Lupus hair loss?

What do you think guys? Should we ask our doctors and find the response and then compare levels if successful? Am I footygirl come lately and this has already been explored? please let me know.

Much love

⚽️

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Footygirl profile image
Footygirl
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13 Replies
Barnclown profile image
Barnclown

I agree. My lupus clinc checks my vit D & C levels at least 1x per year, and various other levels are also checked regularly depending on my symptoms e.g. various Bs. Sodium, iron, phosphates etc are also checked

Wendy39 profile image
Wendy39

Hello. I often wonder about this. My rheumy ordered my Vit D levels to be checked early on in my diagnosis and the levels, I was told, were within normal range. But they haven't been checked since. Diagnosed in Oct 2013. I take a shop bought, run of the mill, multi vitamin that gives 100% of your Vit D, I.e. 5ug. But I am sun sensitive. Always cover up. How does it work, do your Vit D levels deplete over time? Wendy

Andy-1978 profile image
Andy-1978

Im still undergoing diagnosis for Lupus, however with LDH inflammation levels being high my GP decided on a Vit D check. I was found to be insufficient at a score of 32 but it wasnt believed to have been the cause. I was treated with 40,000 IU for seven weeks and cannot say for sure if it helped. Vit D treatment has been completed, and problems still persist. Although I am not in as much pain as I was when the flare started. cannot say for sure if its down to the Vit D or not. I supplement every day with a D3 1,000 IU regardless before and after so surprised it was a little low in the first place.

chrisj profile image
chrisj

My rheumatologist ordered a vit d test when I mentioned not feeling well and it came back as low, so yes I think it should be included with the other regular ones they do for lupus

Footygirl profile image
Footygirl

Thanks for you replies, guys. I got to thinking there are some tests which are done by some docs as run of the mill. Some docs may do some dont and we've met the poo-poo merchants who scoff at the idea of checking vit D. I just wondered with all the vitamins and minetals needed by the body daily, most of which we get through our diet, what if other things are depleted and their cumulative depletion added to our misery via different symptoms. Perhaps those of you with kind helpful docs could ask for a full check just to get a random sample. I shall be asking the Professor hen I get to see him.

Andy 1978, hang in there buddy. We have all been where you are. Sorry that your Vit D treatment didn't result in a boost for you but though  I am no medic I can promise that if you needed the Vit D, it did a lot of good somewhere in your body. Good luck with your continuing quest for diagnosis and remember that you have a lot of friends here who hear you, and share your plight and support you. You are welcome anytime to moan, rant and share. This forum is like a library. You bring a query and you will have a wealth of experienced advice given to you, about anything, however trivial you may think that niggle may be. 

Good luck

Love as always to my wise friends

XOXO

⚽️

noonoo52 profile image
noonoo52

Hi Footygirl ⚽️ Is it true that if you take Vit D3 you should also take K2, I am sure I have read this on one of the Amazon supplement discription or several reviews.

Oh by the way can I ask which team you support.

Take care love noonoox

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to noonoo52

According to this article there is conflicting evidence about whether vitamin K is effective in helping to treat bone loss - webmd.com/vitamins-and-supp...

Vitamin K affects blood clotting so it is very important not to use vitamin K supplements unless your healthcare provider advises you to. People using Coumadin for heart problems, clotting disorders, or other conditions may need to watch their diets closely to control the amount of vitamin K they take in.

Footygirl profile image
Footygirl in reply to noonoo52

Sorry noonoo dont know the answer to that one

Xx⚽️

Penelope-Mary profile image
Penelope-Mary

Hi footygirl! I'm late to read this as usual...being 🙃. Good reading! I was told that I don't manufacture vit D and this is not unusual with lupus. And, low vit D increases joint pain. Just what we need -not! 

PM 🐨

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Footygirl,

We would advise everybody with lupus to have their vitamin D levels checked if possible because most people with the condition are deficient. Vitamin D is essential for proper functioning of the immune system and its deficiency has been associated with more severe cases of SLE. 

Many GPs or consultants will run regular blood panels to check for important deficiencies that could be contributing to symptoms. To try and prevent deficiencies we recommend all people with lupus have a healthy, balanced diet. More information about lupus and diet can be found in our booklet at lupusuk.org.uk/diet-and-exe...

maurice1 profile image
maurice1

I have my vit d checked every 6 months by my GP and 6 monthly checks on calcium, phosphates etc by Rheumatology. My vit d tends to deplete requiring a loading dose. Calcichews don't do the job so now I have the 20000 units vit d3 monthly

johare profile image
johare

As one mineral or vitamin interacts with another for adequate absorption, you would think that with our condition GPS would check vit d and associated, every six to twelve months. However, in my case I have to remind them that my vit d, calcium, iron(in many forms) ferritin, thyroid, ++++++ are always low despite supplements.

Footygirl profile image
Footygirl

Thank you all. I have been stranded in no ether land ie software update scrambled a lot of passwords or should I say swear words so I felt all alone without access to you guys but 

I am back.

Sigh. Still have issues as curser disappears at random so dare not adjust, correct or stop forward typing.

Anyway, thanks for all your input. As some of us thought, here seems to be no one rule about testing for levels of Vit D or minerals.  Thanks Paul, as always for the promising update that there IS a logical reason for having vit D done at least, lets spread the word to our docs guys and press for a D test once a year?

Thanks for all the info guys. I do think that the next test is a comprehensive one needed. I am off to research all things vit and mineral to see if I can find any links... all being stored for my lucky Prof Bruce. Watch out Doc Is a comin for you. (No referral date yet)

Cheer me dears

⚽️

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