Vitamin B complex: Hi does anyone know if... - PBC Foundation

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Vitamin B complex

dollydaydreams profile image
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Hi does anyone know if there is anything in Vitamin B complex that we should not have, I thought not but then read somewhere a bit about Niacin sort of being a no no.

Basically I have started taking them a couple of days ago to see if they will help my skin and hair as they have Biotin in them but only 0.05 mg, but i thought better than nothing

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dollydaydreams
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GrittyReads profile image
GrittyReads

My vitamin 'Bible' is a bit old, but does say Niacin 'supplementation' should not be given to anyone with a liver condition. But I would check something more up-to-date (but not whacky/alternative, so many say very dodgy things). Plus we do need it otherwise, so don't try to cut it out - and remember I'm not an expert, just looking in a book!

You could supplement just the Biotin (eg Brewer's Yeast) but again check something ultra up-to-date. Also, it depends what the hair problem is, as I found reference mainly to the use of biotin for alopecia (hair loss) and seborrheic dermatitis (a bit like cradle cap in babies), but if it's the latter I would see a medic, as it's more complicated for adults.

NB my book only talks of it in micrograms, and I'm guessing your mg is milligrams.

dollydaydreams profile image
dollydaydreams in reply to GrittyReads

No idea mg and ug is just what it says on the bottle, i just thought i would give myself a vit B boost as well, everything else looks okay for the liver

cavi profile image
cavi

Hi I have just had my appointment at QE Hospital Liver consultant and he told me to start taking Brewers Yeast so must be ok to take natural levels of B vitamins im now taking Brewers yeast x

dollydaydreams profile image
dollydaydreams in reply to cavi

Oh great, did he recommend a daily dose, I just ordered some Biotin from Holland and Barratt just before your post came in but only the 300ug ones to try, I will try anything i can use to stop looking like something gone wrong round the head

cavi profile image
cavi in reply to dollydaydreams

Hi yes daily dose which will tell you on the bottle its a good health all rounder skin hair and helps towards a healthy liver and a lot more if you read up on it on the websites im giving it a go had a break out of Eczema tried everything with no joy so giving this ago good luck x

dollydaydreams profile image
dollydaydreams in reply to cavi

My vitB complex just says take one, but then it is an asda cheepo one, This is why I ordered the Biotin from Holland and barratt but theirs come in different doses, why does everything have to be so complicated. asked at the chemist but he didn't look very interested and just said we don't have any.

Well good luck with yours, keep us posted and so will I :o)

KD60 profile image
KD60 in reply to dollydaydreams

I have found that not eating bread of any kind keeps the e eczema away. Also taking a magnesium supplement stops the itch. Vit B complex is essential for me every day. I also use milk thistle in an herbal combination. It is called LiverProtect. Xenoprotex also improves how I feel. I get it from a local naturopath. My liver enzyme levels are still a bit high but much better than they were 4 years ago when I was first diagnosed with PBC. Urso seems to make me fat so I stopped using it.

dollydaydreams profile image
dollydaydreams in reply to dollydaydreams

Hi Cavi, so far all the vit B complex and biotin has done for me is to make me hungry all the time, i have a meal and 15 mins later I am searching for something else.

How do you feel on the brewers yeast

Well dollydaydreams not really thought about Vitamin B complex. We do need all the Vit B's but by supplementation I cannot say there.

Suppose it can be a bit tricky now as I have noticed in the last year that foods that tend to contain white flour are being manufactured with the addition of certain vitamins and minerals and niacin is one of them noticing the first reply about this particular one.

I know in the US this started first with the additon of what is known as 'fortified flour' due to white flour being a processed flour. Apparently certain vitamins and minerals that wholemeal contain in the husk are lost during the processing so they are now re-added.

I know just over a year ago I had checks for folate (folic acid) and vitamin B but not sure which of the B's I had, maybe all. I was at the time midly anaemic and a short course of iron tablets did the trick. I was found to be adequate in folate and vitamin B. (My problem of mild iron deficiency was not caused by the PBC, it was due to the fact I used to encounter nosebleeding which seems to have been remedied now by seeing ENT.)

Do you know if you had any of these checks at your GP or would it be worth asking if you can have a check. I know from over-the-counter bought iron (you can buy supermarkets, etc) that isn't the one that you can get on prescription and bought over-the-counter off a pharmacist is only 14mg of iron so not a high quantity. I expect the others in shop bought supplements that we can buy cheaply almost anywhere (even in our pound shops in the UK) only have a small what is considered daily dose in them anyway.

Actually might it be worthwhile enquiring with the pharmacist as opposed to seeing a GP?

dollydaydreams profile image
dollydaydreams in reply to

I had a B12 check i think, iron and folic acid were okay but then they prescribed folic acid anyway when they were trying to push it down everyones throat, one was saying i wanted iron the other was saying no she wants folic acid. so went to Gp an said do i need these, quick blood test and he said no not really, someone, not sure who or where did suggest that they were getting paid for pushing the folic acid, but that did not originate from me or here I don't think.

in reply to dollydaydreams

Hello again.

I know in America if you are diagnosed with PBC without a biopsy it seems the norm to then have one to stage. (I don't go in for the staging.)

I did once see a video online with a patient called Emily who was being diagnosed with PBC by a Dr. Palmer but can't seem to find it now. I know after she was diagnosed a biopsy was mentioned. At diagnosis this patient was given certain vitamins and calcium with the explanation that we can be prone with having PBC. I know in the Uk it doesn't appear to be the norm.

After I was diagnosed I was found to have what was considered Vitamin D being 'a bit low' but I asked for the results in a figure to see. The hospital consultant put in his letter that it 'wasn't bad' and he wasn't recommending supplements of Vitamin D but if I wanted to do so, ask the GP what to get. I chose not to take any Vitamin D. I was found to have a pretty adequate reading at the next check as that summer I made sure I did go out in the sun as prior to PBC diagnosis in 2010 I worked during the day so wasn't out and about in the sun nor not much over the weekend and I was never a sun-lover anyway. Since 2010 I just dont' bother now. I walk about in the sun and have an half hour slouch and hopefully my Vitamin D in this case remains so.

I don't think that expectant mothers are offered iron and folic acid like they used to be these days. Back in the mid-1980s when I was expecting my first child and then my 2nd these were thrown at you.

Seems that things change all the time and it does get pretty confusing a lot of the time.

dollydaydreams profile image
dollydaydreams in reply to

Well you are prone to osteoporosis with out calcium an vit D when you have PBC so maybe that's what they meant about certain vitamins

in reply to dollydaydreams

Hello again.

Yes we are apparently said to be that bit more vulnerable to osteoporosis but I think that it is also a case of if we strike lucky not to be.

It's also said that women who have gone through the menopause and who are smokers are quite prone to osteoporosis. My own mother-in-law has osteoporosis and hers was discovered when she hurt her shoulder several years ago but she has been a lifelong smoker.

On the other hand I have also read that we can have an intake off too much calcium and the bones can then start to suffer in another way. There seems to be a fine line between phosphorus which I think might be some medication additive used in treatment of osteoporosis in the fact too much can cause the effect that it is supposed to help avoid.

I have to say I am one who would rather not jsut take something just in case.

I know of some women in particular who have regular Vitamin B injections at their GP surgery but I can't help but wonder if at times it isn't required.

dollydaydreams profile image
dollydaydreams in reply to

I would not recommend or say to anyone that a treatment they are having is not required as i am not medically trained, I wish I had not poo poo'd things I had been told to do, like take vit b, have a dexa scan earlier and fought and fought like hell not to have a biopsy for two years, I thought I knew it all, I now realise i didn't, but each to their own, as we say :o)

in reply to dollydaydreams

Agree there with you. Me neither can tell someone not to have or to have any certain treatment/meds.

I think that with an adequate explanation from one of the medical profession as to why it is thought we may require something seems to me a lot of the time lacking. I think it best if areas of treatment are come to a decision on by both patient and doctor. I do think this is the problem that myself has encountered since 2010.

I know if I'd have listened to a GP back in 2012 and gone down his route it wouldn't have been the right one at the time. I had gone several times over a few years explaining I kept having nosebleeds to no avail as often if a doctor cannot see anything when you go it can be put aside. I had a just below lilne in HB count for a few years and the doctor was saying it could be 'internal bleeding' and he wanted me to go for the cameras 'up and down'. I told him I didn't feel that was the problem, I did think due to my nose.

Needless to say I stuck to my guns. I was found to have a slightly lower than normal ferritin count at some point later but was still encountering my nose issue even though I had finally got ENT appointments.

I last saw a doctor re ENT a year ago and ever since I've not really had an issue there and my bloods have returned to a normal

semblance.

I am still adamant though regards liver biopsies. If you have been diagnosed with PBC in our case then I personally cannot see what that would achieve except for some staging that it is said to give one (but that can be a bit fallible due to the area of liver wehre biopsy taken). Also a liver biopsy isn't going to alter any treatment.

I do think where bones are concerned, yes if recommended by a doctor and you are in agreement then treatment would probably be the best option to halt any progressive bone issues later on.

I think we all feel that more vulnerable when we are informed we have something that is 'incurable' and then find out there is just one available treatment out there (urso). I might feel fit and strong at the moment but there's no way of knowing in future if anything starts to develop further how my views might change.

Hope you are keeping as well as can be.

dollydaydreams profile image
dollydaydreams in reply to

No idea, i was diagnosed with a biopsy and i thought they scanned your liver first to see if there was a damaged bit they could take it from, i could see mine on a screen as he was doing it plus i had also had an MRI done of it. I did ask my consultant registrar what stage i was at and he said he had never heard of staging and looked a bit blank, he said the biopsy was done for other reasons, i presume he meant to make sure it wasn't lupus or something of that ilk, but then again like you say who knows.

in reply to dollydaydreams

Unlike yourself I was diagnosed with PBC via abnormal LFTs, 2 symptons and also I had the AMAs. I know had the AMA turned up nothing (nor any other antibodies I was checked for - my ANA was negative) then the next step would have been to have a biopsy. PBC can be definitely diagnosed via a biopsy apparently due to the fact the changes in the cells are present across the liver.

I think it is the staging that might be a bit trickier due to the liver being a large organ and there not necessarily being any damage at the biopsy site. But I do believe it can be known via bloods and a scan anyway, that is how we are fairing with PBC.

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