Vitamin D

I have been reading a lot about taking high levels of Vitamin D for the treatment of auto-immune disorders and I wondered what kind of levels are usually prescribed? Would I have been tested for my Vit D levels? How would I know if I needed to take more? I have Subacute Cutaneous Lupus (SCLE) which is a sub group, having discoid and SLE symptoms, but no organ involvement. I take 400mg of hydroxy a day, plus one iron tablet as I am also borderline aneamic (Ferrous Fumerate 210mg). But I am still constantly tired and battling tog et through the day - and stay up longer than my children! (Also have osteoarthritis and hypermobility) Any advice would be very welcome. Thank you.

18 Replies

  • This is something I am really interested in too but unsure of the answer. My GP refused to test my Vit D levels because he feels that the normal range is different where I live in the far north and we should be able to get enough from spending time outside each day and eating plenty of sardines. I got myself checked privately and was at the lowest end of insufficient at 26 at the end of a good summer and plenty of sardines! So I confronted him with this and after getting a bit defensive he agreed to prescribe me AdCad D3. I went from being severely depressed to okay within 2 weeks of taking this. So I've taken this everyday and got myself privately tested again last year to learn it had gone up to 59.

    The bio-technician at the private clinic suggested I might like to add a couple of extra D3 capsules to the AdCal D3 which I sometimes do but am terrible about remembering! I would find it so much more confidence inspiring if my GP would test me and prescribe the right amount. Presently it's all guess work and I can't afford anymore private tests. I have Hashimoto's, RA and immune mediated small fiber neuropathy and Sjogrens and I think we should be tested routinely once a year with autoimmunity - but there seem to be no NHS guidelines on this and it's an expensive test.

    I like my GP but this does concern me because it's so simple to take vitamin D if we know we need it. But how much? I don't know this I'm afraid.

  • You are extremely unlikely to get a positive d3 answer from an allopathic doctor. But there seem to be ever increasing numbers of people who see enormous benefits in taking extra d3.

    There are sometimes people who take extremely large doses who may have had calcium levels in their blood rise. This is not a good thing as you want it to get to your bones. Taking k2 helps in this respect.

    Dr mercola writes a lot about d3.

    I take 5000iu a day if feeling fluey but have relaxed my regular intake to 2000iu most days and I take k2 as well

  • Nhs choices has a bit of info on vitamin D. It gives some recommendations saying not to take more than 25 micrograms daily.

  • Of course it does.

    Thats why so many ARE posting about vitamin d3.

    Allopathic medicine appears to know a BIG FAT ZILCH about vitamins and our real requirements for them.


  • Well, wow.

  • My vitamin d deficiency was picked up in the battery of tests carried out by my rheumatologist. I was severely deficient. He prescribed a high dose 1 week intense supply of dekristal tablets- 2 a day plus long term adcal- 2 tablets a day. I have dark skin so am at higher risk of deficiency plus I hate the sun. I had put my lack of energy down to my APS and lupus rather than vitamin d deficiency. I'm yet to feel the full benefits.

  • My rheumatologist agreed with my GP - that it was unnecessary to test his patients for vitamin D levels. So if you had him as your rheumy your vitamin D deficiency would still be unrecognised.

    I'm very fair skinned but still managed to be deficient. If you have taken steroids long term and been on an immunesuppressant as I have done (methotrexate) then you are warned to stay out of sun because of the increased risks of skin cancer. People with Lupus often suffer from sunlight anyway. So I do really believe that people such as outselves should be routinely checked for D levels as well as other vitamin and mineral deficiencies annually.

  • Hi Wendy

    You need to ask at your Gp's if you have been tested and if not then ask your Gp for the test. I've seen it on loads of results and I was told it had to be done for me before my initial rheumatologists referral.

    As for how much to take. I was just giving you a web source to check it out on. I know people are given much more and I have taken a lot more myself without any harm but I knew that my levels where low. The problem is if it's borderline you may have to self medicate or request the gps to prescribe - push your symptoms and ask for a trial. They are usually willing to listen.

  • The more you read and research, the more you will wow

    Any testing done may well prompt a response that your levels are 'normal'.

    But just think..

    What if the normal levels are set way too low?

    In fact just at a level enough to prevent rickets but still low enough to be a causal factor in ill health

    What if this is all part of a road to recovery that the rather well funded foundations have 'overlooked'

    Ask an allopathic doctor about the need for vitamins and they poo poo the idea

    I suppose it keeps them busy and in work so there are some winners

  • The problem in England is how much budget there is and what the guideline is that you are supposed to follow.

    Even if you can get them to do the levels and get the answers if like me it is borderline they don't give supplements. But it gives you something to work from. My Gp wasn't concerned so I took it in to my own hands to take a high dose and it had improved. I still take it at slower dose because I work inside most days and I felt so much better during my week in the sunny Alps in December

    How much is suggested as a daily maintenance amount?

  • How much to take is being debated at the moment on the thyroid forum

  • My GP also refused to test me saying he knew I would have low levels as everyone does and to take an OTC supplement. I had the test done privately by means of a finger prick test at home then posted to an NHS lab, I went via a company that then recommend what level of vitamin D to supplement with and send a sublingual oral spray.

    My level was 31.1 which is insufficient, anything below 30.1 is deficient according to these lab ranges. I do feel better but I started a B12 sublingual oral spray at the same time.


  • Last May I went to see my Rheumatologist and asked him if I could have a blood test for vitamin D deficiency because I apply factor 50 sunscreen during the summer months.

    I was feeling very tired and my joints were very painful especially my knees (all signs of low vitamin d).

    The result of the blood test was very low 10 instead of over 50. I had phone calls and a letter to inform me I need to go to my GP for a prescription asap. I am now on Colecalciferol 800iu (200mcg) since June 14

    My consultants wants me to stay on vitamin D.

    Hope this help xx

  • Thank you for all of your replies. I need to see my GP about a few things, so I will add this to the list. I am sun sensitive and wear factor 5o+ on my face all year around and keep covered up with clothing everywhere else. I take a general over-the-counter multivitamin that includes Vit D. But only 5ug. Or whatever the measure is. Fingers crossed the GP listens. Thank you all again.

  • Hi Wendy,

    Mine level was 19 about a year before I was diagnosed w/ lupus.

    I am seeing a nutritionist and she put me on 3 drops of Bio-D-Mulsion Forte which is 2000IU per drop.

    Last test my vit D was in the 30s and we are going for 50-70. I will get it tested again in a few months.

    Not a recommendation, just what I'm going through. I'm also in the states so interesting to contrast experiences. :)

    All the best,


  • A friend sent me this link

  • Thank you for that link, overnighthearingloss, that is a helpful article. I mentioned Vit D levels to my GP but she said it is quite an expensive test and a Consultant has to request it, as a GP she can't. So I am waiting for my next rheumy appt now. Thanks again.

  • My rheumy checked my Vit D levels at my first consultation and found me to be deficient. I have been put on Fultium D3 capsules (800 IU). I have to have 4 a day which equates to 80 mg of vitamin D3 and have to have my levels checked again in a couple of months.

    It puzzles me as I do spend a lot of time in the sun and have also had a strange craving for boiled eggs for about a year!!! Maybe I don't process it properly.

    I do feel my sleep is improving a little and I don't seem to have as many days I have to crawl up the stairs. I have now read up on low Vit D and it is amazing the problems it can potentially cause.

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