A question of Vitamins

[butterflyEi]

I have been taking a vitamin tablet which includes A D E and K as well as a small amount of other vitamins like various Bs.

I was in the audience at a recent presentation and asked the question of whether those with PBC should take A D E & K. The response from the specialist was that those with PSC should but those with PBC only need take a multi vitamin.

So I have been looking at what is available and some multi vitamins contain copper which I believe is a no no for those with liver disease so I am now totally confused.

As an itcher for quite some time now I have tried removing things from my diet, reintroducing them, going without wheat and then dairy and then both at the same time but nothing has made any difference. I have a good healthy diet as organic as possible and little red meat. I did read somewhere that vitamin K helped the body cope with itching but after a few months I do not think it made any difference to me.

Would like to know if anyone takes a multivitamin and if you have gained any benefit or if you think that multivitamins do not help at all.

best wishes

[Hidden]

I take a multi vitamin but they only have ADEK, C, and various B's. I didn't want the ones with the minerals in them due to the copper and iron( the iron purely because I have high levels without taking more). I also take a prescribed vit D due to deficiency the consultant said to continue with them even though my levels are back up now.

I can't comment if they help the PBC itching though as thankfully I don't suffer with it. I like to think they help keep things in balance a little.

[butterflyEi in reply to Hidden]

Thank you Hidden very interesting and helpful

[Hidden]

Hello butterflyEi.

Could you be getting confused with a liver disorder known as Wilson's Disease that is where the liver stores excess copper. I had this blood check as a final one from my GP before he referred me hospital in 2010. I had a negative for Wilson's.

Copper is needed in our diet.

I've got some info on this site I'll pop link on about vitamins and minerals. Copper is explained.

I don't take any supplements except the urso that I call this due to it being a component of bile and a case of adding it to the system.

Vitamin K as far as I know is to due with blood clotting factor.

nutrition.org.uk/nutritions...

[butterflyEi]

Thank you Hidden

Confused -yes!

I feel I try to help myself and then on different advice I am back at square one!

I am going to have a look at your link and let it sink in.

The information about copper was taken from the PBCers.org web site

"Due to excessive storage of copper in the liver, spleen and kidney, copper intakes should be limited to approximately 2 mg/day or less"

best wishes

PS: another look at the PBCers.org page These guidelines are recommended for many PBC patients in late stage.

no wonder I have managed to confuse myself!

[LisaC22]

Hi butterflyEi

I take an multivitamin & extra vitamin D. Both my GP & my consultant (he is one of the top liver specialists in my country) recommended both. By my own choice the multivitamin is an iron free one because I found the one with iron didn't agree with me. I'm happy I get enough iron in my food anyway plus I got tested & my levels were fine. I have to say I feel the benefits since starting to take them. Generally a lot more energy & overall wellness really. Although I did overhaul my lifestyle quite considerably since diagnosis so I can't say for sure what exactly has brought about the positive changes. I think with most supplements it takes at least 3 months to notice the difference. You could always run it by your own doctor & see what they say. Best of luck 🍀

[butterflyEi in reply to LisaC22]

Hi LisaC22

Thank you for your reply it has been most helpful.

I am glad to read that you feel well with more energy.

Best wishes

[Brummi]

Hi, It's always a problem on what medication or vitamins to take. As for me I only take what a consultant tells me to take, better to be safe. I have recently had a flu vaccination and that was a mistake. Since having it I have not felt too good, when I told the consultant all he said was I should have asked him first. On the other hand multi vitamin may not suit every one.

[butterflyEi in reply to Brummi]

Thanks Brummi

One of the problems of waiting for the specialist to give advice is how long in between it takes to see them and when I do how busy they are so it all feels a bit rushed. Sorry to read you are poorly after having the flu jab, for me it has so far been okay it is strange how we have the same auto immune disease but we all react so differently to everything.

[Brummi in reply to butterflyEi]

Hi, when I have any questions or queries I can pick up the phone 24/7 and usually get an answer within the hour.

[butterflyEi in reply to Brummi]

Wow! I have not tried that.

Back in 2006 I was dismissed into the care of the GP by a specialist at the local hospital. I cannot remember who he was. Last year I asked the GP to refer me to our local hospital. I saw the specialist privately last September because I was desperate but it was too expensive for me to continue privately. I have now seen that consultant at the local hospital on 30 January this year. So I am not very up to date with how to interact with the consultant and his team. He is a really nice chap so I hope to build a good relationship with him and his team but in between I am just so grateful for all the help from others and am happy to help others where I can.

[Brummi in reply to butterflyEi]

I also feel lucky as I only live about four miles from the hospital where my transplant was done. The co-ordinaters are always ready to help and advise, I hope you receive the same treatment..