Vitamin D

As if I don't have enough to deal with, my Rheumy nurse rang to tell me that my latest bloods show I am very low on vitamin D. I have been taking a daily Fultium capsule 800iu but now I have to take four of these per day for the next three months, then be reassessed. I spent most of last summer hiding from the sun due to my skin rash/sensitivity and apparently you need sunshine to make this vitamin naturally. Nurse said my lack of this vitamin could explain my total exhaustion, tingling in hands and feet and my memory loss !!! Apparently it's quite common with autoimmune diseases. Oh, and my DEXA scan revealed my osteoporosis is still deteriorating - whatever next ? !! Lynda xx

30 Replies

  • Hi,

    I was feeling more tired than usual and told the rheumy team and they just brushed it off. I mentioned it to my GP and he did a blood test for thyroid and vitamin D. My vitamin D level was low too. He rang me and had my meds delivered to my home. I take two capsules weekly for eight weeks then after another four weeks another blood test.


  • I think that just 10 minutes a day in the sun with face and arms exposed if enough to keep levels up or does your skin react after such a short time ? Morning sun not mid day of course

  • I was told you need at least 40% of your body exposed to sunshine (without sunscreen!!) for 30 min per day to get enough Vitamin D naturally. Clearly it's better absorbed that way. I think we've been unnecessarily scared off of going outdoors. Obviously we shouldn't be sun worshipping, and if you're going to be out longer than 30 min you should likely apply some sun protection, but I don't think we should turn ourselves into vampires. :) I'm also reminded that we shouldn't be drinking alcohol, yet a South American rheumatologist friend of my former rheumatologist told him he advises his patients drink no more than TWO glasses of wine PER DAY! (My current ALT scores forbid my even a weekly glass, but that's a different story and I think medication-related versus alcohol intake).

    At my naturopath's recommendation, upon diagnosis of RA 3 years ago, I started taking 4x the daily recommended dose of Omega 3 plus Vit D (Nutrasea liquid version). I only had my Vit D levels tested last Feb (one year ago) and they were in the healthy range, but not too high. I'm currently taking double the dose in capsule form (4 capsules per day, still Nutrasea). I believe there have been scientific studies showing benefits of both Omega 3 (fish oils) and Vit D for people with RA. I'm sure it's a combination of many factors, but my RA is well-managed at present.

  • I take vitamin D as I was told several years a go that it was low, I was also told that having gluten could affect it as well so I tend to do a gluten free diet as well.

  • I believe vitamin D has a modulating effect on the immune system and that is why it is used in RA. I also developed spinal osteoporosis and fractures after prolonged hospital recumbency despite regular Calcichew tablets and think activity is clearly just as important to srengthen bones. I' have decided fractured bones definitely hurt too much so do not want any more and am striving to beat this weakness. The sooner the sun shines again, the better! I don't think that all this snow generates much vitamin D!! so roll on spring and summer for warm weather and dry non-slippery roads.

  • Hawker, sorry to hear you have osteoporosis. I have it too in addition to everything else. It does take determination these days to keep going !!! Lynda x

  • Thanks, I'm not out for sympathy when we all have our problems on this site bu the last two and a half years have been somewhat sifficult. My cycle-racing accident in August 2012; life-threatening skull fractures, and fractured shoulder, five ribs punctured lung, then in 2013 I'd successfully got back on my bike, winning a club trophy in fact, but managed to sustain four vertebral fractures in Nov '13 secondary to osteoporosis from a combination of genetics and long times in hospital beds, plus a fractured left arm, also in November 2013, right arm in July 2914, and now am aiming to get back to better fitness again but doubt I will ever race again. My RA is well-controlled by HUMIRA, and appropriate paracetamol and Naproxen. I've decided broken bones hurt far too much so don't want any more thank you! All the best to everyone out there. Thi saying is absolutely true: Some things you never get over, you just have to get through...

  • Love that saying! Thanks for sharing and gentle hugs to you!

  • Thanks Karen,

    It is a saying I've told myself any times during the last couple of years. Also I spotted this Tennyson poem that I've tried to live by through my injuries etc.:

    Though we are not now at that strength which in better days moved earth and heaven, that which we are, we are; one equal temper of heroic hearts made weak by time and fate but not in will; To strive, to seek, to find, and not to yield I have this printed out and in a frame on my wall as a reminder to never quit! All the best , Julian a.k.a hawker.

  • Golly, talk about bouncing back! You have done well.

  • I too am low even though I take 5000iu a day. My rheumy said he read that some people lack the ability to create Vit D from being in the Sun. In addition to supplements I play tennis 2-3 times a week in the Sun and still am on the low end of normal.

  • Marsha, that's a high dose of vit D !! If you can play tennis it must be working, haha. Lynda xx

  • I'm also on MTX, Hydroxy, Humira. I recently slacked off the Hydroxy (on my own, not drs orders) and a flare started after 7 mos

    of normal feeling. Started it up again on regular daily and flare has not returned but dr also gave steroid shot to take the inflammation down. I'm not sure the Vit D is helping but I know I'm at low levels so I take it.

  • Most of us are short of vitamin D. The sun is not bright enough anywhere north of Nice. So take them as it can affect all immune disorders. My advice is to then take a maintenance dose to keep it up. Ask your nurse how much once the hyperdose is finished. If you read this and not been tested then ask when your blood is next taken if they will add it on. Low vitamin D can cause as many problems as an overdose. Thus it is important to get the dosage right for you.

  • Beauty, it's complicated, we autoimmunies have so much to deal with. Lynda xx

  • Yes I agree. I cannot have any painkillers cos of allergies. So have to use all I can in complementary medicine. I love my Tai chi.

  • There is an interesting web site about Vitamin D and all the associated problems caused by low levels. The Vitamin D Council. Worth a look?

  • Thank you Phoebe, it's a good site for info. I've signed up for newsletter xx

  • Hell's bells Lynda you need your Majorca holiday to come soon! I was very low in D - had to get myself tested as bloody GPs refused saying it went against practice policy and all of us in North of Scotland would be deficient as normal levels in England wouldn't apply. We have highest rate of MS in the world where I live so this policy beggars belief! I'm very fair skinned so for me to be deficient at the end of a good summer was surprising to the private clinic and they advised me to tell my GP - which I did.

    In the end it turned out my calcium level was low too so GP grudgingly agreed to prescribe ADCal D3 - one a day. Made a big difference to my moods and improved achy joints a bit too.


  • Twitchy, well with my uveitis and other eye problems I found myself sheltering from sun all last summer and it's going to be same this year as eyes so much worse. It's a real juggling game trying to balance everything out. The exhaustion is overwhelming, not really sure if vit D will help much in that respect. We go to Majorca in Spring because the sun not so overpowering and means I don't have to hide under sun brolly too much, can't wait for it to come. We booked Cyprus for three weeks in November as well, again the sun not too overpowering then. I can't believe your Gp would not test vit D for you and you had to pay privately - that's bad !!!! My new Rheumy is a gem, he runs these tests as standard apparently. I'm glad I found him !!

    Are you still on the Adcal ? Did it affect your tummy.

    Lynda xx

  • My dr wouldn't test my Vit D levels when I asked either. Said it wasn't important to her. So I paid on my own too as I had been trying to up my levels and wanted to know. Test showed I had brought it up from the low 30s to only 47. Consult I spoke to said it was fine, but I was disappointed because I had been in the sun and taking supps. Haven't checked it about a yr.

  • Amazing how practice differs. I was at risk of osteoporosis, but no sign of it, as I'd been taking steroids for alopecia. My GP phoned up to offer me Vit D and calcium tablets plus I've to stay on HRT.

  • Hope he offered you Vit K2 as well or the Calcium won't get to the bones. Interesting, D being a hormone and being on HRT. I must look into that, I am sure its our hormones that gives us jip.

  • I am still on AdCal D3 and take extra D3 capsules at the advice of the biochemist at the private clinic. This got my levels up from deficient to low normal when I got it done again last year. I don't know if it's affected my tummy because my tummy is so lawless anyway! Can't afford to do it again but am now pretty confident that my levels are low enough that I'm never going to OD on vitamin D! I get Rosacea in the sun and have always struggled with heat rashes etc but these days I could murder some sunshine and warmth! I have photolightsensitive varifocals as my eyes hurt in brightness. Again nothing on yours I know but I find they really do help me cope with sun and I can read at same time.

    So great about your new rheumy. Won't say I'm jealous because you so deserve this but if and when we move I'm going to do my research very carefully.

    Anyway I've just emerged after 3 days in a blackened out room so this opening the curtains to daylight without needing to be sick is a great improvement for me! Husband and son noticed that I've these little red spots all under my eyes and across my forehead - burst blood vessels from severe pain vomiting - yiuck I look a fright! X

  • Hi Jockety,

    I had some pre cancer spots removed and told to keep out of the sun, Doctor did my bloods and I was D deficient, no doubt due to staying out of the sun.

    Doctor only gave me 1000iu dose and told me it was very high dose, but not so when I checked on the vitamin D Council for an up to date safe dose to take.

    Since taking the higher dose I got rid of my tailbone pain my Doctor said was not curable, my hips no longer hurt, sciatica and restless legs at night and stiffness when getting out of bed and chairs have all gone, but come back if I forget to take my D3.

    Out in the summer sun for 20 mins gives you 15- 20,000 iu international units of sunshine apparently.

    I take 5,000iu daily, but on the odd dull day my body tells me to take a little more.

    D3 is good for bones I take it with K2 as K2 puts calcium into the correct places (your Joints etc.,) or takes it out of the wrong places and puts it where it should be in your body.

    Exhaustion, tingling in hands and feet and memory loss can be down to either B12 deficiency or Hypothyroidism or both. (B12 deficiency mimics Hypothyroidism)

    Do you have cold hands and feet ?

  • Thank you all for your Vit D comments, I've learnt a lot and realise now many of us in our group are also suffering the same !! We are martyrs to our disease !!! Lynda xx

  • Interesting, my notes on D say ave dose = 5000 per day and take blood test after 2 mths. That also deficiency causes Osteoporosis and excess increases it. That we need to be in the range of 50 - 70 nano-gram per CC. not that I understand nano grams. D3 is a hormone I am told. I had it for years in Adcal, maybe that's why I have bad Osteoporosis - nobody told me it should be monitored. Anyway have stopped my Adcal as without vitamin K2 it won't go to bones but into organs - was not told that either, hence my Femur like eggshell so the surgeon says!

    That said, isn't your dose high and what is your level in nanograms?

    As for memory loss are you taking Adcal as that lets Calcium go to the brain too if no Vit K. I hear Vit B3 as Niacinamide helps memory and nerves, I'm taking 250g 3 x a day. Good too for depression and heart disease, oh and helps sleep and energy!

    Hope you get better soon.

  • Hello, I also take vitamin D (1,000 International Units a day) along with Risedronate Sodium (once a week) for osteoporosis. Both of these were on prescription from my consultant (who specialises in osteoporosis). I was referred to her by my rheumatologist. I have another DEXA scan soon so will be interested to see what impact the medication has had. Did your consultant suggest another treatment plan after your DEXA results? All the best.

  • Hi Francherry. My dose for three months is 3200 units per day, then reassessment. I have been taking 800 units per day for over 12 months but levels still very low. I have had adcal in past but suffered badly with my tummy so had to stop. We have not discussed another treatment plan yet following my dexa scan, but I am seeing Rheumy again in Few weeks. I have a lot of horrible things going on presently, psoriatic rash, uveitis etc. I think the osteoporosis has been ignored a bit !! I hope you see an improvement when you have your dexa scan following your vit D meds. Lynda xx

  • Sorry to hear you're having a tough time at the moment. Hope things improve for you soon. Thanks - I hope so too but have to wait until April for the scan - I thought it was next month but got it mixed up with another appointment. The DEXA is to mainly look at how the risedronate sodium has worked as it is unusual to prescribe it to women my age (30s). Good luck with your next appointment x

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