Vitamins an.d supplements.Ok?

I have just recently been diagnosed. 

51yr.old Male.

Over the past yrs my Vitdhad been so low I was taking 50,000 in a week for months.that was before blood test revealed PBC.i had also developed gout which was mistakenly attributed to diet.

Now a lot of things are making more sense.

Like being tired, all the time.

I knew I wstill too young to feel this old.

So my question, over the counter vitamins and supplements. Should they be avoided now too.?? 

13 Replies

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  • Hello dbjdid3.

    Vitamin D is one of the vitamins that absorption can be compromised due to PBC and they can be found to be low.   I am at the moment 51 myself and was diagnosed aged 46.  At the time my Vitamin D on a check was found to be 'a bit low' as the hospital consultant said but he wasn't at the time recommending taking Vitamin D though he said if I wanted to then to do so.  I got the actual reading of the result from the blood test in a number and saw it was 'on the line'.  I hadn't spent a lot of time outdoors in the sun during the UK summers when we had sun as never been a sunbather prior and then worked in jobs where I was inside during the best times to utilise the sun to manufacture Vitamin D through the skin.  After diagnosis I decided I'd be in the sun as much as I can and I have done.  My Vitamin D on a recheck was perfectly adequate.

    Vitamin D is a fat soluble vitamin as is Vitamin for eg and also K plus E so that is more than likely why in PBC we can be deficient as the liver stores them and if our livers are compromised then I suppose it figures.

    I have gone through the odd time where I've had heartburn (I never had pre-urso in December 2010, had this as an initial side-effect for a few months of the urso in the early days) and I bought a supermarket brand cheap tub of calcium with Vitamin D as in the UK anyway where I am it is basically what the indigestion tablets Rennies are (except calcium and Vit D do not have colours and flavourings added like the indigestion tablets do plus and the calcium with Vit D is cheaper too).  I sometimes take the odd calcium and Vitamin D tablet if I get a short bout of heartburn, can't see any harm.

    You can apparently get a prescription from a GP for calcium and Vitamin D but I excpet these are higher mgs than what we can buy off the supermarket shelf.

    Personally I don't take any vitamins or supplements but a time or two I've had one of the Complan packets if I've been feeling a bit low as being a woman and having our cycles, always did feel a bit more drained then.

    I'd speak to the doctor if you are in any doubts as to what you should and shouldn't take re supplements now you have PBC.  The only thing I know is that certain vitamins we can store in the body so you can overdo it but others we need daily as we do not store them.  I know in the case of Vitamin C we can't really overdose on that as it is flushed out of the system in urine apparently.

    I myself try to have a varied diet and eat certain foods that are rich in certain vits or minerals (beetroot for eg is good for iron and other things).  I did post on here recently an article about certain foods that are rich in certain things and are thought to be quite detoxifying.

  • Thank you for you input,I get plenty of sun now.i moved to South Florida. So that should help. I've had heartburn off and on for the last three yrs.wich is when I think I was starting with the symptoms.

    But as a self employed contractor, I just wasn't seeing aDr.fir about four yrs.for anything.too expensive.

    Maybe they would have coach UT sooner whoknows.but I've have had symptoms for almost three yrs. Before beginning urso.

    I'm sure that's not good...

  • I am in Arizona now - plenty of sun but I still have to take 50,000 mg of Vitamin D every week.

  • Hi I was diagnosed in November last year and on recent blood tests my vitamin d was low so my dr told me to buy over the counter tablets and take them. I was doing that when a bone scan showed I had osteopenia and now I am on vitamin d and calcium combined which dr has prescribed. No longer on over the counter vitamin d. I also had low iron count on last blood test but was not anaemia so I'm on low iron tablet too until next bloods.

    This is a great site and people share experiences. 

  • Hi dbjdid3

    craigcameron.us/vits-mins-a...

    You might like to take a look at the above link taken from face book Living with Liver Disease which is a closed group.  Although this group is not specifically for PBC they have some quite interesting articles relating to PBC.

    For myself I recently organized a blood test through Better You and my vitamin D was barely adequate after a sunshine holiday.  I now take a vitamin D spray.  Around the same time I managed to get a Vit B12 blood test from the GP and that was also found to be very low.  I was given a loading dose and will have injections every 3 months.

    I believe self medicating is not ideal but here in the UK some surgeries are so busy it is difficult for the doctor to spend time to explain and evaluate each persons problems.  If you are able to afford it an alternative route would be to seek professional advise from someone qualified such as a dietician or better still a nutritional therapist.  The Institute for Optimal Nutrition in the UK can be found :-

    ion.ac.uk/

    best wishes

  • Hi I had a bone scan a few years ago and it showed I have osteopenia however, at that stage, I wasn't given any specific advice. Since being diagnosed with PBC in Dec. 2015 (I'm also 51 now) I have had another bone scan and that showed the osteopenia. What I don't know however, as I had the scans at different hospitals, is what the readings showed/whether there has been any deterioration nor what my vit D reading was but my GP did say "it may be an idea to start taking vit. D". I too purchased some from local supermarket. On reading other posts, I think I need to ask

     my GP about my vit D levels! Thanks all

  • Hi treefrog,  

    I'm sorry to hear you weren't given specific advice for osteopenia!  The normal advice is to build up bone mass to delay the onset of osteoporosis, or in my case, I was able to eliminate the osteopenia.  I was diagnosed with osteopenia in 2008.  My bone scan from last year came back normal (I'm 36 years old).

    Here's what I learned about fighting Osteopenia:

    Build up bone mass by ensuring you have adequate intake of Calcuim and Vitamin D.  Calcium comes from milk, calcium-enriched products, leafy greens, and over the counter supplements.  Vitamin D comes from eggs, fish, and other dietary sources plus our body makes Vitamin D in response to sunlight.  The doctor can monitor your Vitamin D levels through blood tests, but if the doctor is a moron (ahem), you might have to request it.  Calcium plus Vitamin D supplements are thought to help the body absorb the vitamins better than a calcium-only supplement, but do eat healthy, too.

    Pair this with weight-bearing exercises to build bone mass, such as walking, hiking, push ups, lift weights, or any resistance exercise where the bone has to be strong, not just the muscle. 

    Avoid things that leach nutrients out of the bone such as smoking, excessive drinking, and drinking soda.  Make sure your diet does not contain too much salt, animal protein, or caffeine as these are suspected to interfere with calcium absorption and/or increase the calcium removed from bone storage.

  • Thank you. This answered some of my questions too. Best explanation I have read about calcium/vitamin D. 

  • I'm 36 and male.  Bone scan showed healthy bones, but my d and b12 are very low.  So I take some over the counter pills to hopefully get those numbers up.  Both my gp and gi doctor gave me the green light on taking them.

  • so sorry you're not feeling well..my Specialist the top in NYC said that bc I am on a lot of meds she doesn't recommend me taking any supplements especially VIT C, supposedly VIT C bad for this PBC condition!! I am luckily a symptomatic on URSO, but of course everybody is different, so please check with your Doctor. All the best to you

  • Thanks for the help today I. Appreciate it 

  • Vitamin C is bad for PBC?  *looks suspiciously at orange on desk and does emergency google search* 

    Do you have any more info, mollymom?  I eat a citrus fruit daily!  Maybe I should cut back?

  • Don't worry...ok my Doctor who knows how many meds I am on said don't take Vit C Supplements.....said nothing about eating Oranges....it was only referring to taking the large amounts in supplements Sorry I probably didn't word it correctly...All the best

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