Good morning all,

I know we have had this conversation about supplements before and the general idea is not to take anything other than our prescribed medicine. However I seek your thoughts on the following please:

I am in my early 60s and was diagnosed some 10 years ago. I am being encouraged by my wonderful caring step daughter to take a supplement for Vit D and Vit K. She is very knowledgeable about foods, supplements etc as knowledge for this forms part of her working life. I would like to take her advice but again there is that big but. About two years ago I took a dandelion and artichoke capsule (on her recommendation) about the same time my itch went into overdrive but I was also going through a very stressful time and I had put the itch down to stress rather than the supplement. I currently take Cetirizine to control the itch but in the last couple of days this tablet is no longer keeping the itch at bay. Am I stressed - no come on - its nearly Christmas! :-)

Apparently when our liver is compromised so is our Vit D and Vit K. (She did explain this better than I can type it.)

Has anyone had their Vit D and K levels measured? I have found a company who can do the Vit D test for £25.00 (don't want to ask the GP just now - seems like the NHS is just about to fall over and I am lucky that I can afford £25.00 for such a thing).

I would as always value your advice and input on the above, and apologise for the length of this post.

many thanks


19 Replies

  • I had my vit D checked after presenting with muscle and bone pain and the rhumatoligist found it was very low(10) and prescribed me vitamin D3 at 20,000iu 3 times a week for 3months. My levels are now (50) and I take what he calls a maintenance dose of 1000iu daily. I now have my levels checked on each repeat bloods to keep an eye on it.

    I would suggest getting tested before taking any vitD3 due to its relationship with calcium if you get a low result privately you can take these findings to you GP or consultant. Hope that helps in some way.

  • Yes this is really helpful Candy12, thank you.

  • Hello butterflyEi.

    I have had vitamin levels taken since the year I started to itch and after diagnosis. My Vitamin D level was said to low pre-diagnosis. My GP was recommending buying Vitamin over-the-counter and said to just buy the standard off the shelf ones as opposed to via the pharmacist (these I found can be on prescription also. I pay for prescriptions so they would have worked out expensive as I did ask at the time). I never actually bought any but odd times I've had heartburn I've taken a calcium with Vitamin D tablet that I bought a cheap drum of in the supermarket (Tesco brand). The Rennies that are sold for heartburn are exactly the same formulation but the calcium and Vitamin D don't have flavourings and colourings. I noted too that they are the same mgs.

    When I was diagnosed a few months later the consultant took bloods and he wrote on his letter he sent me that my Vitamin D 'was a bit low but not too bad' and wasn't recommending supplements. I rang secretary to ask for an actual figure so I might have a better idea myself. On looking it was on the line. I started going out in the sun during the warmer months during 2011 and on a recheck my Vitamin D was found to be quite normal. I don't take supplements.

    I doubt it would be too much trouble for a GP to request Vitamin checks from time-to-time and these can be done easily when you have your repeat bloods. My GP did state last yr that it wasn't overly-significant me having the kidney part of the bloods done each 6mths but I always mention to the nurse when I go and she puts them on. Granted they have always been normal. Regarding the fat soluble vitamins like D and K for instance, with having PBC I am sure it would be advisable at intervals to have these checked.

  • Hello Peridot

    Thank you for your reply, you always seem to hit the right spot. No one in the mendical profession has ever mentioned Vit. D but then I never used to be proactive about PBC - a form of denial!

    best wishes

  • Hi Butterfly, my doctor ran a vitamin D blood test when he diagnosed me with PBC. The results were low, so he prescribed a Vitamin D supplement that I take once a week. I think it might be a good idea to get your levels checked.

    If it were me, I would want my doctor's opinion before I start any new supplements, just in case. Your situation might be different from mine, though. I would ask my doctor if supplements should be started now, or if waiting until after the holidays would be better because of the stress.

  • I have sent for the Vit D test kit. If it shows a low level I will make a GP appointment before starting any supplements.

    Thank you for your experiences.

    best wishes

  • Hi ButterflyEi, I take Q10, omega 3 and vit D. Never took any supplements before I was diagnosed. I have terrible muscle and bone pain and I think the vit D helps (a little maybe...). The Q10 is against the fatigue and the omega 3 I hope will help me with the mind buffling stupidity I experience when I am so so tired. So I have turned into a "supplementist" 😀. Don't know how much good it does, but I guess I feel that I am trying to do something... Before I started the vit D the body aches were unbearable!

    My gastro is ok with all this.

  • Thank you Jowen,

    I already take 11 tablets a day and have been so reluctant to take more but from the input of all you lovely people I think I might also become a supplementist. :-)

  • I am on Vit D3, and found a marked improvement as to how I feel, my appetite has returned ,and feel generally better, although my bloods showed that my illness had worsened, I think that was because I came off the Urso, , been on vit D now for 2 months and would highly recommend it , . Mylo2, best wishes

  • Hi Butterfly. I googled sometime ago,that with PBC one has to take supplements like Vit A.D, E and K. In South Africa I dont have a PBC support group, and the doctors also not that knowledgeable on the subject.

  • D and K are synergistic and very safe to take. The majority of people with autoimmune conditions are low in D and benefit from boosting serum levels to the high end of the normal range. There has been quite a bit of research done on this. My medical team all monitor my D level and we try to keep it at 70-80. I take 5000 IU/day to maintain it at those levels. In summertime if you are in the sun quite a bit you can cut back some, and moderate sunshine is beneficial. K protects from any D toxicity, which is extremely rare even at very high dosages. I agree with your stepdaughter on this one. :-)

  • Thank you dianekjs

    I think from all the input most people agree with my stepdaughter and I will be following her advice. I do not have a medical team I was discharged back to the care of my GP years ago. If I want a blood test I have to ask for it. I need to be more proactive, not very good at that. :-)

  • I understand, and am sorry that your GP hasn't been more proactive. He or she should be very aware of the role vitamin D plays in health and illness and should be checking it routinely. I can't imagine any resistance to a request that he check your vitamin D levels. Also, if you're not in the habit of getting copies of all test results, you need to be - every patient needs to keep their own file of all medical documents and learn to advocate for their own care and health. If this GP isn't covering the bases or listening and explaining appropriately, you need to find someone who will. Best of luck and take care.

  • I have vitamin d3 with calcium on prescription, I'm in the UK. I know of another person where I live who also has pbc and she gets other vitamins which incudes vitamin k and d3 and she has them on prescription. I wouldn't feel guilty about going to your doctor to ask for test, the nhs is still free at source.

    I have taken dandelion and artichoke in tonic form, but before having pbc. I eat artichokes and dandelion though (I'm married to a Frenchman). We like to eat dandelion salad. Dandelion is a natural diurtic, hence name in french pisenlit ( pee in bed). Personally I wouldn't take anything until I got green light from consultant but you could eat them. I am going to ask consultant about taking vitamin k to help with osteoporosis. I have recently had my vitamin d3 and calcium tested. I drink guensey milk which is high in vit d and calcium amonst other vitamins and don't take my supplements of calcium and vitamin d3 everyday.

    To be honest I don't understand with pbc how some people are automatically given calcium and vitamin d3 on diagnosis. I was diagnosed in Spain and was given this straight away. It seems to me that there should be be some sort of global normalisation of what to give pbcers in terms of vitamins and what to test for.

  • Good morning IOWCARO

    You have certainly made me smile this morning.

    As to a more easily found global normalisation of symptoms and treatments for those of us who are not so familiar with modern technology I also think it would be a good idea.

    Thank you for the information

    best wishes

  • I have just been to see my consultant he took bloods for my D & put me on a very high dose of D 3.

    There is more than one kind & lots of strengths. He didn't mention K. But said he will be checking A & E next. DO NOT JUST TAKE OVER THE COUNTER ONES. Go to your Dr & ask for a blood test to check them.

  • Thank you teddybear7. I think I have learned a great deal from everyone because of this post not least that I have to be more proactive and possibly forceful in my approach to PBC.

    I have sent for the Vit D testing kit and will progress from there.

    best wishes

  • I have taken a multi vitamin every day since I was a child... My PBC specialist told me definetly not to take Vit Primary physican also said don't take a supplement because as we all know, every chemical is filtered through the Liver..but she did add that if my LFTS are normal (which they are thank goodness) I could take but be careful...I take a daily mega vitamin for women..but you don't ever want to make your Liver work harder to filter any un needed vitamins..I would check with your Dr. .. Good luck.

  • When I was first diagnosed in 2008 I was told that along with calcium I had to take 600mg of vit d daily. I take combo pill of calcium and vitamin d

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