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I am a UK citizen ho is frustrated by the NHS prescribing policy on Vitamin D. I suffer from multiple autoimmune syndromes and 2.5 years ago was found to have a vitamin D level of 12nmol/L at the time I was barely able to walk 20m and had 65% coverage of psoriasis. I as also showing signs of fibromyalgia and/or Lupus and my Sjogrens symptoms were worsening as were my incontinence problems. After 2 months on 50,000IU per week and a further 2 months on 30,000 IU followed by 800 IU per day maintenance I was Psoriasis free, pain free, and continent for the first time in 10 years. My levels had gone up to 80nmol/L and I was swimming up to 3 miles a week, walking my dogs twice a day and working full time. it was at this point therapy stopped and I was left thinking everything would be fine from now on. 2 years on and I am back to square one, all symptoms have returned. My D levels are 56nmol/L and the prescribing guidelines are

Asked by  pippa230169839000 on February 28, 2015

  •  pippa230169839000 on

    See title

    Answered by  pippa230169839000 on
  •  pippa230169839000 on

    and the prescribing guidelines are <50 nmol/L = lifestyle advice/ OTC supplementation <35nmol/L = deficiency/ prescription Vitamin D

    I am planning to write a literature review and primary survey to lobby the NHS to change its policy on not prescribing Vitamin D at therapeutic levels for autoimmune patients. I believe it will be more cost effective as well as safer than Methotrexate or Biologics.

    If anyone has any information or can point me in the direction of recent research to help with this quest I would be very grateful.

    Answered by  pippa230169839000 on
  •  IAW on

    Pippa are you a member of the Vitamin D Council? It will make it easier to point you in the right direction for the information. If you are not a member it will take me a little longer but can still supply the information.

    Answered by  IAW on
  •  Ian Hodgson on

    Pippa if you are doing a Iiterature review to present to the NHS then the Council website will provide you a wealth of properly reviewed papers (better than anywhere). I recommend a membership to get access. It is well worth it. In addition check out Dr. William Grant’s site SUNARC. You can also get a general list of papers and summaries from the VitaminD wiki.

    To answer your question about the recommended 5000iu daily you need to read many of the papers around this topic, particularly those presented by Dr. John Cannell on the VDC because the answer to this question comes from many different angles and no single study answers the question. In fact if you do propose a modification of the NHS guidelines or regulations you will need a very solid background of research.

    Like you in UK we in NZ have the most ridiculous regulations around vitamin D supplementation and sloppy advice about sun exposure.

    Answered by  Ian Hodgson on
  •  pippa230169839000 on

    Thanks for the replies both but I’m afraid my current financial situation will not allow me to set up any more monthly subscriptions and I am unable to afford yearly fees. Living on UK benefits for some time now due to illness has left me in debt. I am desperate to get my life back but I’m being told to go take OTC supliments. In order to take enough to get my levels anywhere near 75 nmol/L will cost me about £40 a month. Apart from that this is about more than just me. I have two autistic children born in the spring following winter pregnancy and one non autistic child born in the Autumn following a glorious summer. The links I have found between Vit D and Autism, autoimmunity and autism, Vit D and autoimmune conditions and pregnancy remission of autoimmune diseases, estriol and autoimmune diseases as well as many other studies linking T-Cell activity and reactivity to Vit D and estrogens are astounding. These are all separate studies but when you put them together they all amount to the same thing. I believe the lowest level every person needs is 75nmol/L and pregnant women should aim for higher.

    Proper supplementation of Vitamin D could save the NHS millions in reducing the incidents of autoimmune diseases and Autism not to mention relieve the suffering of millions of people. I am not saying it is a cure but its the nearest thing we have to one and it doesn’t seem to be taken seriously enough.

    If my lack of finances mean I am going to find it more difficult to write this review then I guess it will just have to be difficult!

    Answered by  pippa230169839000 on
  •  IAW on

    Pippa, the Vitamin D Council is run purely on money they get from donations and membership fees. (Just in case a yearly membership runs 50.00 US dollars and yes I understand if you do not have it, you do not have it!) It was really not long ago that Dr. Cannell himself could not do this job full time but had to keep his “day job” to support his family. We have come a long way. He works full time at the Vitamin D Council and has been helping families with Autistic children. Did you know that he has written a book about Vitamin D and Autism? I think it comes out in April 2015.
    I understand your circumstances. If you were a member I would point you to the following article.
    In September 2011 Dr. Cannell wrote a piece titled “Why Should You Keep Your Vitamin D Level Around 50ng/ml? https://www.vitamindcouncil.org/blog/why-should-you-keep-your-vitamin-d-level-around-50-ngml/. “Why should you keep your vitamin D level around 50 ng/ml?” “Four different sources, using four different rationales, and four different lines of reasoning, all lead to the same conclusion”.
    1. Our closest “simian relative” the chimpanzee, has levels between 40 -60 ng/ml (Reinhold Veith)
    2. Lifeguards in summer have 40 -60 ng/ml levels without supplements.
    3. It takes a Mother having a level of between 40 -60ng/ml herself to then have Vitamin D show up in breast milk for her baby. (Professor Bruce Hollis and Carol Wagner)
    4. Humans do not “store” Vitamin D until they reach a level of 40ng/ml. (Professor Robert Heaney)
    Of course after that came more information. New study: Vitamin D levels of the Maasai and Hadzabe of Africa Posted on January 25, 2012 by John Cannell, MD. http://www.ncbi.nlm.nih.gov/pubmed/22264449

    You are also correct when you say there are so many studies that point to Vitamin D deficiency causing so many diseases! They have also tried and continue to try and change the guidelines here in the US.

    I do not know if this would help but BioTech http://www.biotechpharmacal.com/catalog/d3-5-5000-iu/ ships anywhere and it appears to me, for example, their bottle of 5000iu that has 250 pills would be 15.70 US dollars plus shipping of 10.00 US dollars for total of 25.70 US dollars. Looks like you could get 4 bottles and the shipping does not change but it does say “estimate shipping”.
    If you have not already please read http://www.vitamindcouncil.org/blog/petition-to-ask-the-fnb-to-revise-rda-for-vitamin-d/.

    Answered by  IAW on

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