Vitamin D Guidelines UK

[ITYFIALMCTT]

There have been several comments recently about vitamin D levels so I thought it might be helpful to give an overview of some UK guidelines tho' the implementation of them will vary from one Clinical Commissioning Group (CCG) to another.

NICE treatment and prevention summary for Vit D deficiency in adults:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regimes are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each CCG has their own implementation of the guidelines and I'd like to say that they're very similar but they're not. However, in the context of the people posting on NRAS, particularly those who are taking a corticosteroid, it's worth chatting to your GP or rheumatologist and requesting treatment in accordance with NICE guidelines and loading doses if there's no contraindication for these. (My CCG does not permit a GP to prescribe >2400IU per day nor a loading dose.)

Once loading dosages have been completed you will need a reduced amount to maintain your appropriate vitamin D level: whether or not this is 800IU or more/less than this will depend on several factors including what your sun exposure is and preferred dietary sources. And not all CCGs will consent to re-testing which is why it might fall upon individuals to fund their own testing if they want to do this. Again, it may be worth discussing this with your rheumatology team who might be permitted to run repeat tests.

I will mention that depending on your liver and kidney function tests it would be helpful for a rheumatology team to collaborate with your GP in correcting vitamin D deficiencies. Similarly, the NICE guidelines detail lifestyle advice however there's a need for some joined-up thinking on:

dietary intake if you have known absorption issues;

appropriate sun exposure, particularly if there's any photosensitivity (whether idiosyncratic or associated with a medication): nras.org.uk/photosensitivity

Hat-tip to a member of another forum for the link to the NICE guidelines.

ETA: Catherine Collins is a Fellow of the BDA & registered dietician - see her vitamin D response: healthunlocked.com/user/cat...

ETA 2: There are so many news items about almost everyone being deficient in vitamin D in the UK when what is really meant is that they're below the optimal level for some of the year that it's easy to lose sight of the fact that there's a difference between that and severe deficiency. Severe vitamin D deficiency can have such extensive systemic effects that it has been misdiagnosed as secondary bone cancer in some published cases:

ncbi.nlm.nih.gov/pmc/articl...

[Ali_H]

Thanks

Ali

[Kai--]

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Thank you kindly, ITYFIALMCTT. 🙏 😌

(Now linked to from: Supplements/ Nutrients (B12, Vit. D, Potassium, Protein . . . ) for RAers/ Autoimmuners & Plant-Based Dieters (Vegans, Vegetarians, . . . ): healthunlocked.com/cure-art.... 👍 )

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🙏 🍀 🌺 🌞

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[nomoreheels]

Thanks for this, very helpful.

[LizzieR]

Thank you x

[Nicole2000]

Thanks. I started on a loading dose as my vit D was nonexistent and now on 800 units for the past 2 years. It’s made a huge difference.

N x

[ITYFIALMCTT in reply to Nicole2000]

It is quite startling the difference supplementation can make when you're severely deficient in vitamin D, isn't it.

It's good that you're managing to maintain an adequate/sufficient categorisation with 800IU after your loading dose. Do you need to tweak during Winter or do you manage to stay within bounds for the whole year, may I ask? (Ignore this if it's intrusive.)

[Nicole2000 in reply to ITYFIALMCTT]

I’ve stayed the same for the past 2 years, but my PsA drugs make me feel additional tired so sometimes I wonder if the work at all. But they do because on a good day I still feel much better than I did when I walked into the rheumatologist office for the very first time.

N x

[Gillian15649 in reply to Nicole2000]

Same for me. Certainly makes me less depressed.

[dhall54]

Thank you for this - and the link to Catherine Collins’ post which I found fascinating. When I stopped taking methotrexate (with rheumatologist’s blessing - I have spondyloarthropathy) and cut right back on Naproxen the Registrar told me the one thing I should definitely take is the highest dose vitamin D I could find - even though my bloods showed adequate levels.