Vitamin D question: Hi everyone, Just quick... - LUPUS UK


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Vitamin D question

jnmmum profile image

Hi everyone, Just quick question for those of you who know about vitamin D. Had GP surgery on phone: I was Vit D deficient (30) this time last year and surgery have not tested my vitamin D level since so I got my rheumy to stick it on to the batch of bloods I had done at my last appointment with her. After 3 months of 20,000 and 9 months of 1,000 units I am now up to 67 which is still insufficient and receptionist said I need to supplement or go on holiday (I wish!) I am supplementing! Should I stay on my 1000 units a day or increase especially as we are coming in to winter? How long does it take to get to the sufficient level?! I have ankylosing spondylitis and I think there is a link between that and low vit D anyway. Not seeing rheumy again until January or I'd ask her :)

12 Replies

There is a link between low vit D and most autoimmune disease but no-one knows if it is cause or effect.

Without knowing the units I'd have though that was only barely insufficient - I suspect 75 is the borderline but within reason, the higher the better (not above 150 though). However - your level now is at its peak after the summer and theoretically being able to manufacturer vit D by the action of sun on the skin. It will now fall steadily until the spring. They should have checked after the high dose period - you say 20,000 IU, was that per week? Or per day? Sometimes it goes quite high and then falls quickly again as the reserves in the body fill up more slowly.

I live in northern Italy where, again theoretically, we can make vit D in skin all year round. Nevertheless about 80% of the population is deficient! The local vit D guru says at least 2000 IU/day all winter, even here.

jnmmum profile image
jnmmum in reply to PMRpro

Hi, it was 20,000 twice a week for 3 months then 1,000 daily since. The receptionist just said the Vit D line in the results said 40-250 and then (67) so I assumed this was the level, but could be wrong. I'll nip in tomorrow and ask for a print out of the result so I can be sure. I am amazed they called - they don't usually, but since the diagnosis came through of AS I think they've started to pay attention: previously I was Mrs All In Her Head, Depressed and Hysterical..!

PMRpro profile image
PMRpro in reply to jnmmum

That's a funny range.

Yes - hopefully someone got a small kick for ignoring someone with a real condition. We in the PMR forum get a lot of that sort of attitude. They still insist it only happens in over 50s - I am convinced there are loads of younger patients with AiHHDaH and fibromyalgia diagnoses that aren't...

jnmmum profile image
jnmmum in reply to PMRpro

Yes - even when I presented with all the symptoms of AS and tested positive for hla b27 I still had difficulty getting a referral. In hindsight I have had a lot of symptoms that can be attributed to AS but I'd never heard of it before the positive blood test. All these diseases overlap so much and I was sure something was wrong but when the usual bloods come back normal and a succession of drs insist you need antidepressants and CBT you lose faith in yourself. I told the rheumy my pain was about a 3 because I am just so used to it now. The fatigue was always my big thing and hat can be caused by almost limitless things!


Have you had a bone dexter scan to check if you have Osteoporosis?.

I have SLE and every few years I have a bone scan, unfortunately my last said that I only had Osteopenia and a week later I fell & broke my arm. After that my Rhuematologist prescribed Vitamin D tablets. I take them every morning now. Maybe you should ask your GP or Consultant to prescribe them for you.

jnmmum profile image
jnmmum in reply to Cal66

No, not yet but presume there will be one done at some point, as I know AS can cause osteoporosis. I'm 44 so I'm not sure if they will do it when I am older or now because of the AS? Another question to put on my list for next rheumy apt - I was given diagnosis, a load of leaflets and sent out the door last time! I was just so thankful to finally know what it was and that it was not in my head that I didn't ask many questions!! My GP is useless - no follow ups at all on anything. When I asked to be tested again for Vit D I just got a letter saying that Mid Essex is no longer going to be prescribing Vit D so go to the health food shop to get it!

My mum and sister both buy theirs from the Health shop, they buy Vitamin D3, I’m lucky I mine from the GP, but my Consultant prescribed them.

Your not too young to have a bone Density scan, I had mine 1st when I was 27. If your not happy with your GP change him, I did.

I am pleased that you eventually got a diagnosis, it took a long time for my SLE diagnoses, so I know how you feel, it’s such a relief, good luck.

jnmmum profile image
jnmmum in reply to Cal66

Oh yes it is a huge relief - only took 26 years to get here! I'll ask about the bone density scan. I've stayed with my GP simply because I can ways get a same day appointment there when needed but going to ask rheumys next time what care I should be receiving from the gp

I take 5000 IUs per day. Your doctor could probably tell you best dose for your level. I live in Arizona one of the sunniest places on earth and I'm still low, have SLE. Take care😍

jnmmum profile image
jnmmum in reply to nanleighh

Yes, I think I am actually going to have to go in and speak to someone. I'm just getting my head round the AS diagnosis and learning about it, speaking to other women with the condition (apparently it affects us differently to men) and seeing what symptoms we share to narrow down what is causing each symptom. I get the impression that, like lupus, it affects everyone differently! Could do with some of you Arizona sun right now as getting cold here and that always exacerbates symptoms :)

Yes, this is why I asked my surgery repeatedly to do the test again as I had been on Vit D for 1 year with no follow up. It was only because my friend was told she was insufficient and put on same dose as me then told the test would be repeated in 6 months that I thought - hang on, no one is following this up with me! In the end I got the rheumy to stick it on the round of tests she was doing as she was ordering bloods anyway. I've been on 100IU a day since beginning Jan I think after taking 20,000IU 2x weekly for 6 weeks (I think - I'm trying to remember! I thought it was 3 months but I also think I only got 12 tablets!) Once the kids are back at school I will enquire at the surgery - got enough going on here with my daughter having a broken ankle in a cast. She's not the best of patients :) And Monday is a non-pupil day - aaargghhhhhh!

Vitamin D toxicity is extremely rare and is usually associated with the 50,000 IU doses. For good resource look up and search vitamin D toxicity.

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