Does anyone with PBC take vitamin supplements? - PBC Foundation

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Does anyone with PBC take vitamin supplements?

mojo62 profile image
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mojo62 profile image
mojo62
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19 Replies
kosy2 profile image
kosy2

HI,

I take B12 injection once per month, vitamin D and folic acid once per day.

I actually don't myself. I did have a low 'but not so bad' reading of Vit D during 2010 and also Feb 2011 but the hospital doctor wasn't concerned and said utilise the sun more (I have never been a sun-bather). He said I could consider supplements but with PBC he recommended injection form but I declined and Oct 2011 bloods came back with adequate levels. I looked at the numericals for the Vit D and they were on the line when I was informed the reading was 'low but not so bad' (as the doc said).

I know in the past I have had had 2 bouts of mild anaemia which have resulted in a few mths of iron tablets from the GP BUT I'd not take now as they can have the opposite effect on the liver apparently so I'd not unless advised.

TracyLou profile image
TracyLou

Hi, I take multivitamin with blueberry & lycopene, my own choice. I was prescribed calcium tablets but stop taking them I eat enough calcium reach foods anyway.

Hello - I am reallyinterested in the b12 injections. Every time I go for a blood test I am told that I am deficient in something it seems to change all the time. I have been having terrible thinning and hair loSs and I heard that vit b12 can help although my blood tests don't show up a lack of this. How did you get to have the injections did your blood tests show a deficiency? Also did you have hair loSs symptoms? Finally (sorry for lots of questions) - are you UK based?

kosy2 profile image
kosy2 in reply to

I live in Baltimore, Maryland USA. Blood test showed I was low in B12. In the summer of 2010 I was seeing a doc for Lab Band (my BMI is 54) surgery. He was the one to perscribe B12 injections. Dec. 30, 2011 had to have Lap Band removed. Will have my primiary care doctor to perscribe from now on. As for how much it helps don's really see much difference, but figure it won't hurt so why not.

I too have notice thining hair. Just figure it part of getting old (I'm 54) the menapose thing.

in reply to

Hello nickyl.

I originally had all the Vitamin counts long before I saw an hospital doctor as the GP started doing diff blood tests to check for this and that, rule this and that out. At the time everything was pretty much in order with the exception of a 'not too bad' Vit D level. I know here in the UK normally a GP would prescribe so I expect it would have to be yourself who enquired at your doctor's who may decide to check.

Hope this helps a bit.

in reply to

I have recently noticed hair loss, so you are not the only one. I grateful to be starting with a good head of hair. I didn,t realize until reading your post that there could be a result of the PBC.

Gioielli profile image
Gioielli

Hi - I am a vegetarian so have been taking multi vitamins and iron for years. Now taking Vit D and calcium supplements which I okayed with my consultant. Not sure what my levels are but reckon that you can't have too much of a good thing!!

i take Vitamin D and LiverDetox -

I have low Vit D and calcium levels so have to take a prescribed supplement. I also take B12 as i,m a vegan

Shirleygreen profile image
Shirleygreen

Gosh where do I start, I have had PBC for about 4 or 5 years now and take loads of vitamins etc. I take cod liver oil, honey and cider vinegar, calcium, glucosomine, turmeric, bilberry for dry eyes, (the turmeric and honey and cider vinegar and bilberry I read about in The Bear Facts from the PBC Foundation) Flaxseed (Linseed Oil) for dry skin and eyes. Do I feel any better for taking it all? ,I haven't a clue ! But don't feel too bad get on with life and try not to think about it. I take my Urso prescribed by my consultant who I see once a year and keep my fingers crossed that I may be one of the lucky ones and the illness progresses slowly. Will I ever be brave enough to stop taking it all - I think not!!!! I wish you luck.

mittymouse profile image
mittymouse in reply to Shirleygreen

what strength magnesium do you take and are you doing so because you have had your levels checked or just you want to . im thinking about taking it but wasnt sure if it was safe with p b c! Thanks

I was advised by my consultant in mid December to take Vitamin A for night blindness which I've had for 3 winters.. I couldn't get just Vit A so got Vitamins A & D. My blood results showed a Vit D deficiency, so I was advised to take Adcal D3 in addition to this. My GP said I should stop taking the vit A & D capsules because vit A is dangerous if too much is taken. My bone density scan result has just come back and I have osteopenia. I am very confused about supplements. Had an interesting talk to my pharmacist. In his shop there are vit D capsules which are 500% of your recommended daily allowance. Most people who will buy them have no idea whether they need or should take them! I feel more inclined to get some than not - who of us wants osteoporosis?? I've just written to the liver team: if they will monitor my levels to check I haven't overdone it, I would take loads. I'll let you know if I get an answer. Best of luck. If you feel inclined you can read about vitamin supplements on NHS Choices website and Boots WebMD. The specific problem I think we PBC sufferers have is that we don't know whether our livers are doing the bizz with these vitamins, so it may be we should be on a comparatively high dose, but unless we can get some sensible monitoring and support we may end up making our situation worse. If you search Vitamin D on this forum site you'll find lots of us have Vit D deficiency. At least the clocks will change next weekend. That'll be a shot in the arm for ull of us. Happy summer months, everyone.

mojo62 profile image
mojo62

Thanks for all your comments and advice. Having just been diagnosed I am finding you all so supportive and helpful. Dare say i will be drawing on your experiences during the coming months.Take care everyone.

Magnolia profile image
Magnolia

I take Vitamin D and Calcuim for I have Osteoporsis. The PBC causes my levels of Vit D to always be low. I use Magnesium and a Multi-Vitamin. I use Biotin for hair loss. I use Acidophilus which wards off yeast infections in my case. I was also told not to be taking alot of Vitamin A, for it could be dangerous.

Out of interest here, I've always been a bit of a pessimist regards supplements tho' I do like malt in a jar with added cod liver oil at intervals.

I've always wondered tho' reading the other ingredients in vitamins and minerals and even prescribed medications in pill or tablet form what they could do. Talc is one ingredient that I have noticed and aren't some off a plastic. Don't want to alarm anyone but I am still of the statement if you don't need.....

PS Can't Vit A in high doses prove a bit lethal?

Pat_H profile image
Pat_H

Hi Mojo62

I've taken Vitamin D for years, so have continued since my diagnosis and I haven't been told to stop. I started taking Vitamin D when I read an article about people in northern europe having insufficient levels of the vitamin, particularly in Winter.

I also take Co-Enzyme Q10. Again I began taking this years ago and again I haven't been told to stop.

Pat_H

plizzard profile image
plizzard

i was told by my specialist not to take any natural therapys vit etc after suffering liver failure last year have had pbc for 13 yrs but do get a vit b shot monthly

I was told yesterday to take a multi-vitamin and milkthistle,

after I called the drs office, because like you I was too shocked to ask any questions when I was told the dx.

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