Saw a specialist today in Sydney .....so thought I would share this with u all . He told me that pbc is prevalent in some areas in UK due to the water ! He spent 6 yrs working in Queen Elizabeth Hospital in Birmingham .
He also told me never to take two antibiotics.......Clavulinic acid (Augmentin in Australia) and Flucloxacillin as they harm the biliary ducts in the liver .
He asked me if I had taken HRT ? So estrogen may well be a factor in triggering Pbc . He told me that the titre of antibodies was not relevant as they change according to other things eg like taking anti biotics .
He also told me that the older you are at diagnosis the better ....I guess that's obvious .
I'm an identical twin ......we both have the antibodies but no symptoms as yet ...we take part in the twin research at St Thomas's Hospital but we may look for a researcher who may be interested in us in the UK . I live in Sydney in the winter .
Hope you found this of interest ! All the very best to you all !
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janeliz
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Hi, Thanks for the infomation, mind you the HRT will not bother me but all pieces of info are always interesting. The doctor who had worked at the QE in Birmingham will be well trained , I had my transplant done there. Thanks again
Thanks for all this info, very interesting. Especially about antibiotics: another GP in my practice gave me Flucloxacillin a year ago - I didn't take any, it was prescribed in case something v mild became worse, as I was going away for a day or two.
I think the studies on UK regional PBC prevalence are quite old - I'll try to find them.
I have been wondering, and asking, for years if there is any link between PBC (and other autoimmune conditions) and female hormones. Mainly because about 10x as many women as men get PBC, and also because it often seems to start in women with the perimenopause. There is research being done, and Keren posted a link to it a few works ago, on a fascinating (45-strong hits and counting) post.
If you want to look the link is: (doesn't seem to be working, but I did find the article ).
I had raised liver bloods . My mother had an auto immune lung disease...pnumonitus so I think there is a genetic link . I think hormones could be a factor.....I have fibroids and was unable to have children because of them ......maybe excess estrogen is a factor too. The specialist asked me if I had dry eyes...that's srogens I think. Thank you for your reply.
There is a video on the PBC Foundation website showing a talk given by Professor Neuberger who puts forward the various thoughts on PBC and its distribution amongst other topics. If you go to the members section you will find it there should it be of interest to you. It seems to me that an idea occurs and then a study is put together and the results are then published and although these ideas may or may not prove to have any foundation it all helps with the puzzle that is PBC. PBC is known world-wide now and in instances where people have never travelled let alone lived in England it is unlikely that we can blame PBC on parts of England's water supply - but of course that is my personal opinion. I think the current research from Canada recently posted on this site is very interesting and hopefully will find the answer to the question of how we get PBC.
It is good to know about the anti biotics and I shall make a note of this - thank you.
Thank you ...I will look that up . The water thing may be one trigger ! I have the cold sore virus......I wonder if anyone else has that ! The hormone link is interesting too . All the best .
Yes I used to get them. Sometimes get the occasional tingle but it comes to nothing. I used to use a product which if I remember correctly it was Zovirax. My Dad used to get them and I assume that at some point he kissed me hello when one was active. I was always a child who liked her cuddles now I am an older lady I still do cold sores are a human papilloma virus.
I don't think that Janeliz (or rather the specialist who was talking to her) was - in any way - trying to suggest that PBC was unique to UK, or that it started here and spread. Merely, that the higher incidence of PBC in some geographical regions of the UK (which was well documented - don't know if records have continued) may be caused by something in the water in those areas.
If there was a verifiable correlation between the water source and a higher incidence of PBC in that area, then surely that is something that should be checked out?? It could be a pollutant that could be eradicated, or a higher level of some natural chemical that has an effect on human metabolism.
Whatever the cause - if there is one that can be traced - there is no earthly reason why the same, or similar, cause could not exist in the water supplies of regions in many other countries, quite independently.
Good point grittyreads. I think sometimes also that some of us are more susceptible to certain things than others but I feel that the "clever" bods will eventually find something to help us.
I'm from Ireland so can't blame the UK water supply however I have read that there is a link through Northern Europe whether genetically or environmentally. Lack of sun and low levels of Vit D, methinks. It's all very interesting. Think he may be correct about the femal hormones, very obvious! I have also recently discovered I have fibroids which are also under hormone control. the research is wonderful, long may it continue and speed up. I hope you continue to be well Janeliz.
I've been living in the mediterranean for the past 15 years, loads of sun. I have only been drinking Well water until recently. I hope they find the cause soon.
I have fibroids too! Maybe spending the English in Australia helps keep me well! All the best to you .
I have to agree with butterflyEi, the world is a big place and regional water supply in the UK as a cause seems unlikely, but with the theory from Canada that it is caused by a virus seems promising.
Perhaps a researcher somewhere needs to look at both the virus and water suppy as the medium of how this virus enters the human body. After all we all drink water but not everyone takes HRT or antibiotics.
My own personal view is an imbalance of all the hormones I had hormone imbalance most of my adult life not just at perimenopause. I am convinced that included the female level of testosterone. Who knows one day our posts may get read by a specialist who makes the link and cracks the puzzle. So keep posting...
Agree with u on female levels of testosterone ! That is one hormone which is rarely measured . Hoping the twin research in St Thomas London does liver function tests ....my twin and I could help with that ! All the best .
I have high oestrogen, & suffered from endometriosis all my life until had the mirena 5 years ago.
I would like to know so much more about this whole female hormone question, as I can't help wondering about all sorts of variables ...
Eg Is it possible that PBC has not developed in me (I test +ve for AMAs, but have stayed clear of PBC, with no symptoms and perfect lfts, ultrasounds etc. for 23 years now) because I have not had children, so didn't have all that hormone disruption ... or because I've spent much of my life on anti-endo type contraceptives ... and didn't develop at perimenopause because of the mirena ... Or one of any of a hundred other variables... that as yet have not been investigated?
There are so many variables, and we don't know if they are all being comprehensibly investigated.
Are the research pathways that end up being followed, just the ones that interest the drug companies, because they can make billions out of a drug???
I do worry that because of the way researchers follow their individual pathways (see the news on the chap in Alberta who argues that PBC is caused by a betaretrovirus) whether someone is looking at the overall picture or not. It's great that this guy had funding for his work, but how many possible research pathways are there that don't get investigated because they are not financially viable?
One of the doctors here in Australia I see for the trial drug OCA is in the middle of her PhD investigating the link between Vitamin D and PBC( specifically Vitamin D exposure during teenage years) Watch this space!
Too little. This theory is behind one of possible causes of MS, the prevalence of which is higher in colder/less sunny climates. Worldwide, PBC would seem to be more prevalent in particular areas such as NE England, Scandanavia....research is being conducted on various fronts it would seem.
I also wonder if that is to little , as I have never been a sun worshiper, and always need to stay in the shade or I overheat even as a child I would faint if I got too much sun.
I do have a deficiency at the moment and take 1000iu daily as a maintenance dose following a much higher dose as it was so low.
I just want to echo your last paragraph - exactly applies to me - hormones out of balance including testosterone since the birth of my daughter 25 years ago. Who knows one day .....
Hello janeliz.
Interesting....but.....I have been finding reading posts on here for several months now that a lot of it is just speculation as to how we develop PBC. I have to say I have wondered but I am still of the belief that it is something that we are all exposed to that causes PBC. Like a virus that goes round, the plague in history for one, I expect there will always be people who do not succumb to certain things. I for one don't seem to prone to colds.
I am in the UK and I actually do not think that water is the cause of developing PBC. I know for a fact that years ago the water here in Lancs used to be local reservoirs but then at some point - think around 15yrs ago - we had it altered and we now receive water from Cumbria which is in the Lake District, as daft as that sounds. If this was to be sited as a cause then I am certain that Cumbrians would have a more prevalence of PBC but from what I can see on figures of areas of PBC occurrences they do not seem to do so. I know when I was diagnosed with PBC aged 46 back in 2010 the consultant I saw said at diagnosis that he reckoned that I had started with PBC a few years prior.
I also think that maybe the majority of medications out there can be stressful to the liver as they act like a poison, even paracetamol that we have as a painkiller in the UK is treat like that by the liver. Augmentin used to exist here in the UK but I am not sure if it is still available. I remember my late father being prescribed this. I've not had any other medications except for urso in Dec 2010 in this time and pre-2010 I hadn't had any meds since 1999 when I had to take amoxcillin for a bad bout of tonsillitis.
I agree with the AMA (antibodies) that they can fluctuate. I was found to have a 'high titre' that gave the diagnosis of PBC back in 2010. I saw a doctor early 2010 with itching and at the time I did have fatigue also. I've never been checked since for the AMAs and can't see the point if PBC is said to remain for remainder of life. I believe though that at times when the bloods are exceptionally well on checking then that perhaps means that the antibodies are in a reduced capacity and though no guarantee they'll remain that way, I do believe that this is when the PBC has slowed down considerably. I think too that with PBC one can encounter a sudden halt but there's no guarantee again if it'll restart up at some point.
Interesting about the progression of the disease...why it progresses faster in some people? There must be factors. Hope someone finds the answers soon . Thanks for your reply . We should all call the twin research unit in St Thomas and ask them to research auto immune diseases because they are all horrid ! Thanks for your info .
Hi it's funny you should mention water. I live in Featherstone and our tap water smells of chloride/bleachy it also tastes a bit off. I have PBC/AIH overlap and have become very reluctant to drink tap water and have turned to bottle water. I wonder if it would be wise to complain to Yorkshire Water about this issue and if they would doi anything to rectify it.
Just to put another theory on the list, or maybe to scotch some of the ideas above on this thread. I live in New Zealand, never been pregnant, have Scleroderma and Sjogren's as well as PBC which are all AutoImmune and Mitral Stenosis which is as a result of childhood Rheumatic Fever. I got lots of sun as a youngster and actually until the last 3 years when I have been less well than before. I have from time to time had the antibiotics mentioned as no-no's but never for a very long duration. I have never smoked tobacco, or anything else for that matter, and have never been a drinker of alcohol. Used to drink socially a bit when I was younger but almost nothing for the past 40 years. Maybe one nip of a spirit sometimes until I was diagnosed with PBC.
I think,myself it is just the luck of the draw some people get these things and some don't.
I think the point is judy that researchers are looking for patterns, evidence, clusters, similarities etc rather than isolated, anecdotal stories, valuable those these are. There must be a reason why there is a cluster of people with PBC in NE England and also a higher than average incidence of it in Scandinavia. The fact that I have PBC and grew up in the sun in Australia is not as interesting to me as the fact that generally speaking the prevalence of PBC is less pronounced here than in the northern hemisphere ....why ?? Food for thought indeed !
Would you mind sharing with me the name of this specialist you saw in Sydney and which clinic or hospital He/She is located? We are desperately in need of a second opinion for my wife's PBC.
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cold sores are a human papilloma virus.
Just diagnosed with PBC
Liver Biopsy Negative can it still be PBC?
im scared and dont know what to do
To take or not to take Urso!!!!
I really need some advice
