Vitamin D (D3) - UK

Thought I'd share my experience of the last two weeks with everyone. Most specifically this is for UK people, mileage for others may vary.

So, following Paula's doc and the news about NHS recommending Vitamin D supplements I toddled off to the GP the week before last. I asked for a Vitamin D test and Pneumococcal test.

Went back for results today. Pneumococcal results not back but Vitamin D verdict was in. My Vitamin D level is below recommended at 24.6 with min guidance of 25.

I was not at all surprised, her view was it is common for our latitude. My contribution was that "plus a bit of an own-goal covering up due to CLL".

Very pleased with GP was straight onto it with recommendations. I have 15 days high dose Vitamin D3 supplement (20,000 IU per day) then onto a regular 800 IU per day. Final step to book an appointment for six weeks time to do another blood test to check the results.

Today has been one of those good days we all like, plus I was out in the garden in the sun afterwards (covered up of course).

best, rob

14 Replies

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  • Yes I've done the same about Vit D Rob and am now on supplements. My haematologist wasn't aware of any guidance relating to maintaining optimal Vit D levels for CLL'ers.

    Newdawn

  • I knew the doses are in the hundreds of IUs. I was a bit surprised to see the high dose capsules were 20,000. But there you go, can't really complain, I asked and I received.

    rob

  • I'm on a maintenance dose of 800iu daily but started on that whopper dosage to get me into reasonable range first.

    Newdawn

  • Is there a link to published information in the UK that people can print out and show to their doctors.?

    Many, (most), UK doctors may not be up to date with Vit D and CLL.

    Dick

  • Hi Dick,

    I just went into my GP's and asked referring to the news, so did not have it with me. The GP, in my case knew what I was talking about. It is not a CLL specific recommendation, it is generic across the population.

    You could start from here: nhs.uk/news/2016/07July/Pag...

    rob

  • Thanks for sharing this Rob. I wonder why when I asked my GP many months ago to test for vitimin D, she said she would do a thyroid test. I never followed that up. Going for a blood test in December, I will remember to have it done this time.

    Bubnjay1

  • I think I over-egged the Pneumonia jab thing. Should just have pointed to the Green book ref from Paula's doc. I mentioned it to my consultant when I saw him in September and he added it to is letter to my GP requesting the Pneumococcal serum test. GP thinks they are done in batches as not so commonly requested so that's possibly stuck in the system somewhere.

    I think I'm pleased with the Vitamin D outcome so far.

    rob

  • I know with other cancers ( family ones) they were always prescribed Vitamin D and aspirin. I have now encouraged my partner to book in for test and to also ask about aspirin ( with CLL being a blood disorder) maybe that is why?

  • No aspirin! (or other nsaids)

  • I was on low dose ASA for 15 years while having CLL to thin the blood slightly... never heard of a contraindication in CLL.

    ~chris

  • It is the thin the blood part and the bleeding possibility. I was told only tylenol.

  • Rob,

    I hope you get the great results I received once I found out my vitamin D levels were low. I have so much more energy and am so much more active now. I was at the point where I was needing a daily nap, and that is not my personality. I am always active.

    Best regards,

    Sally

  • You need a level of 50-70 Vit D3 OH 25.

    Please refer to lots of literature via google.

  • Having read about this recently, I intend to take these tablets from now on, in the darker months, anyway - but maybe all year, because I have to use factor 50 on sunny days (UV 4 or more) after a CLL-related skin cancer.

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