Low Vitamin D and Lupus: So today I get a letter... - LUPUS UK

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Low Vitamin D and Lupus

ScottishGirlGla
ScottishGirlGla
47 Replies

So today I get a letter from Rheumatologist say that I have low Vitamin D Levels, no other detail but go to your GP and get a supplement.

I'm still waiting for other results of bloods and still to see an ENT with regards to nasal sores.

However in reading low vitamin D does seem to be more prevalent in those with Lupus and autoimmune conditions. Anyone else got any input?

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stiff19

I don’t know so can’t comment as I don’t have lupus diagnosis but do know constantly told need vit d lately and have been taking supplements for month or more . Funny thing is been low for years but never had all these symptoms just always during routine bloods given iron vit d and folic.

Last blood taken,months to year ago told vit d iron , given months supply of iron but tests never follow to check.

I hope taking supplements of vit d now boost it up and see what else they blame such symptoms on. Soz little faith when vit d low always without such array of symptoms.

Good luck 🙏

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ScottishGirlGla

Thanks, just got letter in so will have to make GP appt and will check on other bloods taken a few weeks ago. Will have to give meds a go but my energy level is zero and I tire so quickly so this could give me a little bit of a reason why that is happening

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Lupiknits

I have low VitD alerts to my GP every time I have blood tests. I have no idea if it’s related: it’s said a lot of the population is low ( but not that low) on VitD. I put it down to being to my Celtic fair skin, a lifetime of sun dodging and now being advised to wear Factor50 year round. My diet is also very restricted.

VitD is very important though, and can cause aches and pains as far as I know.

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ScottishGirlGla

Thanks, I have noticed especially in the last couple of days how achy I am feeling and the lethargy is awful x

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Lupiknits

The VitD may well help! I do hope so.

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PMRpro

I'm not sure you can say it is a symptom of lupus: low vit D levels are found in a lot of autoimmune disorders and it isn't yet clear if it is cause or effect. However, low vit D has its own set of symptoms, getting the vit D level up to an optimal level should show if any problems are due to that. In asthma it can make a major difference to attacks - not so clear elsewhere.

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ScottishGirlGla

Sorry not been clear, what I meant to say that from what I read it is seen in more people with Lupus and autoimmune

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Oshgosh

When they say see your GP,it makes me go funny.

I don’t think they are aware of how hard it is to get an appointment.

Van never get an advance appointment,phone appointments seem to be disappearing.

So get up early,ring at eight

And wait ( note poetry)

Then hang on in the queue,desperately hoping the appointments won’t have all gone when it gets to my turn.

Happy. Days eh.

Hope you’re having a good day

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ScottishGirlGla

Done that waiting on the phone dance many times. You phone minute they are open and are in queue no.26 😂

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Oshgosh

Or number 37

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ScottishGirlGla

🤣

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miccika1

You don't need to wait for GP you can buy vitamin D over the counter.

And as the other person said , vit d is often low in autoimmune disease but nobody knows why.

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RachelD1972

You can buy it to start you off, but prescription strength on calcium/vit d/iron is always a lot higher x

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Krock1

My wife has had issues with vitamin D for a few years. Although she has RA the problem with the Vit D has been due to hyperactive parathyroid glands and the balance of vitD, calcium, and parathyroid hormone (PTH). You should get those tested in blood work.

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alrick_1980

I have that but be very careful because that can easily affect your bones.

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Krock1
Krock1
in reply to alrick_1980

I strongly agree. She has had six or seven spontaneous fractures and both shoulders replaced. Two of the four parathyroid glands were removed before getting it under control. The D3 is a key factor we watch closely.

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Doey1962

I to have low vitamin D reading all these seems like it's part of lupus,

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ScottishGirlGla

Yeah I'd rather see GP as want to see all my other bloodwork too . Need to see any additional changes from my last bloods . The Vitamin D wasn't flagged up last time so something must have changed

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HazelW

I have Lupus and had low Vit D levels. GP initially prescribed Vit D but under new rules can no longer prescribe so I have to buy it over the counter. Exactly the same strength & dosage - only difference is the cost ! 😀

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ScottishGirlGla

Thats interesting to know, however even if they can't prescribe I still want to know the level, and will need to keep bloods under review

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eekt

GP's in Scotland can prescribe VitD. I had a high loading dose for six weeks and now have it on repeat prescription.

Lupus and low VitD have long been linked, it's part of the immune system. This research paper from 2017 suggests VitD deficiency is partly a cause of SLE:

healthunlocked.com/lupusuk/...💥💥💥

And of course, the BSR guideline recommends sunblock for anyone with SLE! xxx

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ScottishGirlGla

thanks, thats really useful 😃

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cowhide

Yes, low Vit D very common in autoimmune diseases. I was deficient and initially prescribed a very high dose as bog standard would not be likely to restore levels and high dose expensive. After about 4 months I was up to normal and then told to take 1000 iu per day after a few years we upped this to 2000 iu. I just get the levels checked at end of summer and end of winter as obviously it is winter it tends to drop down again. Vit D3 is very cheap there is no need to buy an expensive brand and I buy my own now, it works out £1/month.

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ScottishGirlGla

Will see what doc says and how it corresponds to the rest of my bloods taken a few weeks ago

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Lizziequink

Hi, I've been on Adcal-D3 (containing 10 micrograms of Vit D) x 2 daily for almost 30 years following a diagnosis of osteoporosis (family history of the condition). No-one has ever mentioned low Vit D levels in relation to auto-immune. In fact I under the impression it was just to safeguard my bones. Following blood tests a few months ago GP also prescribed Folic Acid but level of Vit D wasn't mentioned. Have to admit that since joining this site I'm starting to wonder about all the health issues I've been diagnosed with over the years and which are connected. Hope you find the answers :)

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ScottishGirlGla

I am thinking more and more that things that have happened over the last 10 years are all connected but because they are all apart then medics not joining dots

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Lizziequink

I totally agree. I have a number of conditions that have been diagnosed over the years that now all appear to be linked but, as you say, nobody is joining the dots and if we suggest it to the 'experts', we're imagining it. Keep up to good fight :)

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ScottishGirlGla

Yeah, apparently there has been studies that mothers who have auto immune conditions are more likely to have kids with ASD. Both my kids have Aspergers. I said that to rheumatologist and she looked at me like I was bonkers

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Lizziequink

Hi again, I wasn't aware of the ASD connection. That must be difficult for you to deal with. Your rheumatologist sounds just like the one I had - wouldn't accept anything he hadn't thought of himself. Thankfully I see a new one at the beginning of next month. Look after yourself x

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ScottishGirlGla

There is quite a few studies spectrumnews.org/news/immun... and yes it is difficult but we cope. And yes when someone can't put all symptoms, past medical history, family history and some bloods but focuses on one thing to dissuade them from taking you seriously it's difficult. Take care of yourself too

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Lizziequink

Thanks from one Scottish Girl to another x

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Krazykat26

I'm prescribed Evacal which is vit d n calcium..I'm diagnosed with Cutaneous Lupus n am very light sensitive..I'm on steroids too.

As far as I understand it..we get vitamin d from sunlight..n steroid use can damage the bones!!

Kat 😽😽 xx

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nanleighh

Hi Scottish GirlGla, I don’t know if this helps, but I had the symptoms of lupus for years before I finally had bloodwork that enabled them to give me a diagnosis, but all along had very low vitamin D levels. Take care and good luck on your journey 🍀❣️

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ScottishGirlGla

Thanks I have probably been having active symptoms that have concerned me for about 5 years but looking back some pointers long before that. Its just getting doctors to put things all together in the big picture

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Maureenpearl

Hi ScottishGirlGla,

I asked my consultant four years ago if I could have my blood tested for the Vitamin D level because I use factor 50 sun block and cover up as much as possible in the summer.

My vitamin D level was very low and my GP prescribed meds for me to take and after a month I had to have my blood level checked again and I though that will be the end of taking the the med but I was told I have to take this Vitamin D supplement forever.

I was diagnosed with lupus and autoimmune disease which of course causes fatigue and a lot of joint pain so I would not have bothered mentioning to the doctors these symptoms. I think I read somewhere that a lot of black people are lacking in Vitamin D and I think I also saw it on this forum.

Your GP will choose the right vitamin D supplement that will be right for you based on your other medications that you are taking.

All the best, Praying that you will soon be feeling strong, pain free and energised.

God bless.

Maureen

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ScottishGirlGla

Thanks, will be making Doctor appt. tomorrow to discuss supplement

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linda96

Yes, I’m low Vit d, lupus diagnosis.

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ScottishGirlGla

Thanks. It just adds up with the +ve ANA and anticardiolipin antibody too but symptomatic that there is something afoot, hopefully will be clearer soon

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chrisj

I'm on a vit D supplement that I was told I'd need for the rest of my life.

Not sure if its SLE related or not but my body stopped making vit D some time after I was diagnosed with Lupus. I had shortness of breath (partly down to undiagnosed asthma) aching muscles, couldn't lift my arms long enough to comb my hair and no energy, sleeping all the time. I have Sjogrens as well.

I was asked to take a 24 hour urine sample back to the hospital the following day and the low levels showed up in that. A vit D capsule was taken every month over 4 months at the hospital, they weren't prescribed outside the hosp dep, and then prescribed supplements 4 times a day ever since. I was asked to buy them by a gp recently but I refused, may change my mind if I can a proper dosage set up.

My immune system is currently stable and last sept's appointment hydroxy was stopped, she said it'd been stable "for a long time".....I had no idea, assumed because the pills kept coming I needed them. I go back next month for follow up bloods to make sure all is ok. I must ask if the vit D defficiency is down to Lupus...I imagine it is I've never been sure, I dont ask a lot of questions. Whenever I asked to stop the supplements I was told no.

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ScottishGirlGla

I will see what the GP says . I'm getting repeat bloods in January unless need then before but deffo feeling extreme lethargy just now so not surprised something was flagged up

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Beautifulwoman

I also have low vit D levels. I was taking 1000mg, doc has since boosted me to taking 3000mg of vit D3 daily. Since Vit D supports immunity and lupus affects your immune system; it probably isn't a bad idea to have a vitamin that supports us anyway. It cant hurt. Just another pill that we have to add to the daily regimen.

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ScottishGirlGla

Yeah, just hoping it's not a big pill, lol!

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KatieRL

I'm an SLE patient and about 5yrs after diagnosis my Vit D levels began to dip. My rheumy/renal doctors put me on Alfacalcidol 1 microgram per day. These meds have worked really well for me - I used to take 1 x 1microgram daily for 7 days, now its the same dosage but only three times a week. One of the few meds I've taken with no side effects either!

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Minimum

I have the same, I get vit D from Asda and it has helped loads. take care. xx

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ScottishGirlGla

My husband is picking up my prescription today but when i questioned on getting levels checked there was vagueness so I guess will just press for it every few months

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catblue1865

I am low in vitamin d and on vitamin d tablets but no diagnoses for lupus (or anything else), despite lots of symptoms, presumed it was because I try to stay out of sun as much as possible due to my light sensitivity, although I still get burnt anyway, got one more follow up appointment with dermatologist so might ask her about it. I'm learning a lot from this site including lots of medical terms I've never heard of. It would be so nice for one doctor to take an overall view and investigate symptoms properly.

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ScottishGirlGla

I agree so much with your last sentence!

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