I have been following all your interesting posts in here for a while, and thought it was about time to share my own story.
I am 48 and Danish, but moved to UK a few years ago, so please excuse my bad english and misspellings.
I was diagnosed with pbc in september 2014, and have had problems dealing with it. My grandmother died, aged 42, from a liver disease 1944, so I instantly thought I was dying too.
I had a routine health check late 2013 that showed elevated liver enzymes and a high count of white blood cells. After being monitored for a year with blood test showing the same every time, and cholesterol increasing from 5 to 6, I was finally referred to a specialist. He diagnosed me, put me on Ursofalk and told me to go home, live my life, forget about it and not read about pbc on the internet! Of course, that is not human possible, so I have been reading all I can about pbc and autoimmune diseases.
I have no idea what stage pbc I have, but thinking back in time I did visit a doctor in 2007 because of itching in my ears. I still have itching in ears from time to time, and also on lower legs. Fatique I don´t know of yet. I have often felt bloated after eating, often had stomach pain and problems with digestion, but never talked to my GP about it. Some years ago I went to a specialist because the nail on my right big toe started looking weird. It was not a fungus, so I have just lived with it, covering it up with nailpolish. Now I have read somewhere, that it can actually be a sign of your liver not working well, and being on Urso now for 5 months...my nail is suddenly growing into normal !! Anyone else with this experience ?
I must admit, after reading about pbc and autoimmunity and found myself a private GP in London who are looking more into the causes of autoimmunity.
In addition to Ursofalk she has put me on 30 mg of zinc citrate every day. She told me that a problem with Urso is, that it allows copper to accumulate in our body over time, and this is toxic. I am not exactly sure how it works, but apparantly it is very important that zinc-copper minerals are in balance. She has also told me about leaky gut syndrome, and that it can cause autoimmune diseases. I have therefore been on a gluten- and milk-free diet with probiotic-suppliment since october....and feeling great. I try to avoid sugar too, but for some reason it is harder for me. I do not drink alcohol, I have had only a few glasses of wine in the last 18 months.
First thing I do in the morning, to clean my liver, is drink warm water with a sqeezed lemon in. I sip it through a straw to protect my teeth. I have also had my hormones tested, since the liver plays a role in the metabolizm of hormones. I have not reached memopause yet, but there were some imbalances though. My private GP has put me on bioidentical hormones, 20 mg dhea and testosterone.
I have just been to my NHS doctor for my first blood test since diagnosis in september, and almost everything are back to normal. I am so happy. Alkaline phosphatate is slightly out of normal range, 161 iu/L after being in 4- and 500´s, and eosinophilcounts are just slightly over normal. My cholesterol level dropped from 6 to 4,6. Only problem I still have is low ferritin, but I will start taking some supplements now.
All in all having pbc has changed my life. It is sometimes difficult to stick to my diet, especially when going out for dinner at restaurants or friends houses. I do not want to be annoing to anyone, so I have only told a few about this. As long as I stick to diet on a daily basis it will be OK. Also eating pills morning and evening is new, and sometimes I forget to take Urso with my meal. If I take Urso later than my meal, it can actually give me some itch(?)
As sad as I am to have this disease -I also have asthma- I must say that I feel better than I have in years. When thoughts are getting dark, I try to think to myself how lucky I am that my pbc was discovered. I have made a lot of changes, and maybe it is just Urso that is the key to my well being.... .but now I do not dare to change anything.
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Lisbeth_66
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Thankyou for sharing with us Lisbeth, and very interesting too. I like the sound of your private GP and hormone tests - this has given me food for thought. You are being very proactive in every way you can - well done - and also given me reminders of things I should be doing as well. I recently bought a nutri bullet and will get that out of the box and start using it today.
I keep trying to keep up to date on vits and minerals, but on my own it's hard to balance them all, and allow for all the various feedback complications (as Lisbeth indicates can happen, with the Urso affecting copper levels). I would like to see someone like Lisbeth's private nutritionist, but not sure that there are any I'd trust in Devon, and imagine I'd have to go private. As I'm already considering that for PBC, this could prove exorbitant.
I too, like the sound of your private GP. I have a niggling worry that my hormone levels haven't been tested despite a clear unexplained imbalance since the birth of my daughter (24 years ago!). Also my cholesterol levels haven't been checked although I have what appears to be small xanthelasma on one eyelid.
I don't know why but the thought of going to a private doctor with a list of concerns and asking for tests is somehow easier than doing the same with my GP. Maybe I've been way too passive, way too long.
I, like you, am trying to change my lifestyle for the better, eventhough according to my consultant I haven't got PBC (just AMA M2 antibodies). Just fell off the healthy bandwagon a bit a Christmas and haven't quite got back yet. However, I did manage this week to run 1/4 mile without collapsing or peeing myself! For me, that was a major achievement.
There are just so many, many things that can take your mind off the idea of running....good book, cup of tea, warm house.....
I was under the misapprehension that because I walk the dog, I was reasonably fit. O Lord was I wrong! Gentle jogging 1/4 mile nearly killed me!
Hello Lisbeth66.
Easy for a medic to say to go home, get on with life and forget about reading anything on PBC, on the internet in particular. I was diagnosed with PBC Dec 2010 and I was 46 by then. I started on urso and tried to get on with life best I could despite having the itch badly at diagnosis.
I went round in circles awhile and then simply decided I'd just get on with life best as I could, enjoy it, make a few small changes to my current life at the time (I had a full-time demanding job back in 2010) as there was nothing I could do to rid myself of PBC, it was with me for the rest of my life (unless a cure came along).
As the year mark came along and I was still itching and in a way although I started to have better blood results I didn't think I was progressing towards the normal me at the time. But as time went by the itching lessened a bit and I only tend to have it at night time now. Yes it causes broken nights sleep and I feel tired later afternoon with it but that is all I have apart from still abnormal bloods though not so abnormal. I have been diagnosed for 4yrs now but it is almost 5yrs since I started itching and went to the doctor. I think it needs time to start feeling you are doing well.
I think over time with urso due to it helping digestion much better it then means the liver gets to start attempting to rejuvenate itself and can cope that much better so I think we see certain changes in other parts of the body.
I think too once you have PBC and you start to eat even better than you thought you did, those changes can add to a better feeling.
I've only experiemented over a year span with milk thistle myself but decided that it wasn't making any difference and I wasn't going to continue spending money on it as it worked out far more expensive than a prescription of urso is (I have to pay for our NHS prescriptions).
I started going through the menopause myself 2yrs ago and thought I had about finished but last weekend realised that I haven't completed yet. I had no problems with my cycle over the years, regualr as clockwork and only in the last 2yrs has it gone a bit haywire and spaced out more but nothing untoward to cause me to question it. I have been lucky in the fact that I've not actually experienced any of the 'hot flushes' that are talked about as such. I've experienced 3 in the last 2 yrs and that is all. I am not far of being 51 now. I was raised that you just get on with things like this so I've not seen a doctor at all with regards to the menopause as to me it a natural thing and I am not experiencing any problems so no need.
It can be usual for one to have a high cholesterol count when they are being investigated for PBC. Mine was slightly but nothing untoward. It can also mean that it is the healthier cholesterol apparently. But I've not followed up on that one and I'm not interested.
As much as tests can be done to find out what is or isn't working right in the liver (ie hormone tests) it has to be remembered the liver has a multitude of things that it does so I do think certain things can be a glitch, others notso. At the end of the day how I see it is that even though we can try to correct these as we can with certain, our system is still producing these antibodies that are causing us to have PBC. This is why I reckon the only way to call a halt to PBC would be to find a solution to this. Maybe something to destroy what is causing our bile ducts to be under attack. I only take urso, nothing else and as far as I know PBC is the only thing that I have. I rarely frequented a doctor pre-2010, this is what I found hard to accept when I was informed I had PBC.
I think we all have to go with our own way of thyinking to deal with our PBC and I do think it is interesting to find out others are doing, managing. I do think that we culd all switch off, get on with it and never read anything else on PBC but listen to our doctors but I don't think that is wholly the way to go. I do think we can keep abreast of new developments out there for treating PBC via the internet and who knows one day someone might just come up with some question that maybe points someone of a scientific background to wonder and who knows where it will go from there.
I am so glad that you seem to be on a good keel at the moment with PBC. I hope you continue to be as well as you are sounding.
I know you are right, that urso is the only treatment at the moment. Luckily it seems to work well for most people.
I just can´t help myself to wonder why my body is attacking itself in the first place..there must be a reason. There must be a cause to autoimmunity.
I guess it is a little odd that I take hormones when I don´t have any problems with memopause, but it was recomended by my doctor. She tells me it is good for pbcérs. The hormones are bioidentical so they are very mild, and they have done a lot of good to my mood (says my husbond) and has done wonders to my skin as well. I have more energy now and I see possibilities instead of obstacles. I have never used birth control pills, because I have been very much against the use of hormones. Now I feel I need them, and that they do me good. I tell myself that not using the pill before, I have space in my hormone account to do it now.
Regarding milk thistle, I have been told to stay away from any kind of herbs.
I am pleased that you are doing so good 4yrs on. I think urso will keep you well, but let´s hope the future will bring a real cure to this rare disease. All the best to you xx
Interesting indeed your posting about your doctor recommending taking hormones with having PBC.
I've not heard that one before. I remember when I first saw the hospital consultant back in early November 2010 (the day he was to take the antibodies blood test that led to PBC diagnosis for me the following month), he asked me twice if I was still having a menstrual cycle and I recall getting annoyed the second time I told him that yes I was and that I'd never had any problems, regular as clockwork over the years. I started going through the menopause 2 years ago now and have to say I've not really experienced any problems. Can be a bit irritating at times when I have no idea of when I am going to have a cycle as it got a bit mroe spaced out but nothing untoward. I had hoped that was the end of it when I never had one when I might have done end of 2014 and started counting the days since the last. I got to 67 and then thought great that was it but then on the 68th....so I've not yet completed but I will be thankful when I do. Think almost 40 years of having a cycle 13 times a year is by far enough now (though I've had only about half in the last 2 years).
I did take birth control pills when I was 18 after my late first husband and I got engaged and then married but it only last 18 months as I was never keen. I have never liked taking medications or preventatives unless absolutely necessary and with birth control tablets, you are basically altering the cycle pattern I think.
I know now if a doctor was to suggest I take hormones with age and menopause I have to say I personally could not do it. I was raised to believe that a woman's system is designed for childbirth in the event of (I have 2 children grown-up now) and then later life it winds down to become non-existent in reproduction so that is how I see it.
I know the liver plays a part in hormones but it also does a lot of other things too, an immense amount really. I think at the end of the day we all make our own choice regarding certain things and even though I have stated my view, for all I know it might just be of some aid in the long run but we don't know it yet.
That is my biggest puzzle with PBC, how did it start up? If we knew then I am sure we could have done our best to perhaps avoid it? I think the way forward with PBC is to find something to destroy the antibodies that are slowly destroying the bile ducts that gives us PBC as once the bile ducts are gone unlike our liver that can repair itself to a certain extent if it hasn't gone to a stage beyond, they cannot rejuvenate themselves.
Hope you continue to be well as can be with PBC just like I do.
I too am tempted to see a private consultant about PBC, and had not imagined someone being so precise about vitamin and mineral levels, even though I know they should be looked at more with all PBC (and potential) sufferers.
Like badpiglet, I only test +ve for AMAs, and have now had 23 years of 'perfect' liver function tests, and no real symptoms of PBC. I am currently embarking on the process of having my diagnosis reassessed, as after having lft tests for about 12 years and then being told to stop - on the grounds that after after all that time I would never develop anything (PBC had never been mentioned) - a few years later, when the +ve AMAs were re-noticed by a new-to-me GP, I was sent to a new consultant. He still stuck to the line of: 'only AMAs, so just have annual lft tests' .. . but nevertheless he then diagnosed me as having 'pre-symptomatic PBC' which does not strictly exist as a diagnosis, but plays havoc with insurance.
Basically, I have reached a stage where I want someone to either remove the spurious diagnosis, or prove I have PBC.
I'm also very intrigued about what you say about Urso. I don't remember other people on this site talking about the risk of it causing copper to accumulate. I wonder if you could post another comment, where you highlight that in the question comment, so that all people will see it? I think a lot of people may have missed that little piece of information, as it was buried in your post. I'm sure lots of people (possibly including GPs) are not aware of that risk.
I'm also doubly alarmed, as I know that there are people in my situation - AMAs only - who have had consultants or GP s pressure them into having urso, when they don't yet need it. Another site user, 'Keren', posted on here a few weeks ago, saying that her leading consultant will not give her Urso until she really does have PBC (she's another AMA only). Look back through her posts, they are interesting. I've been quibbling for ages about the role of female hormones in relation to autoimmune conditions, and Keren sent me a link about recent research.
Thanks so much for a great post. I'm so pleased all your efforts are reaping benefits, long may you continue to improve and flourish. Do keep posting on here and letting us know how you are.
I have recently been to my private doctor, and I usually get a report shortly after. This time I have asked her to tell me exactly what the problem with copper accumulation is and to describe why I need to take zinc citrate. When I get her reply I will post a question about it here. I was not aware that not everyone could read my post, as I clicked that box (?) After reading your comment I suddently came into doubt about the reason for copper accumulation. I am quite sure she said it was caused by URSO, but it is probably the disease itself that causes this. I have seeked the internet, and I find several hits about it when googeling " pbc copper accumulation"
I will have a look for the 'copper accumulation pbc' online links, but will wait to see what you see when you have seen your consultant again with anticipation.
I think everyone can read your post, it's just that at certain times of the week (eg weekends, or later in the day, for some) not as many people seem to log in - or at least there are definitely fewer questions and contributions - esp. w'ends. Also, I think some people don't read on, if the main thrust of the question doesn't relate much to their experience of PBC. It is such a varied condition for most, that some people tend to limit their responses to areas they can identify with.
However, I just felt that the issue of copper accumulation was important, and needed to be flagged up.
Thanks also for the additional info on diet below. I will give the non-dairy milk another try. Otherwise I'm okay with my diet - don't have a sweet tooth, although I find gluten-free cereals, bread etc, do not give enough fibre, and I get constipation(!) So - yes - now making my own granola with gluten-free oats, plus nuts, seeds, fruit etc. I don't have PBC, yet, and I want to do everything I can to keep it that way.
Hi, I think you're wonderful, my situation is so similar to yours and for the first time in a while I feel great, pbc isn't a death sentence, it's just about a few different lifestyle changes, thank you xx
I was first diagnosed with PBC but then went on to be diagnosed also with AIH so now on steroids. I did take URSO for a while when I was being treated for solely PBC but my specialist doesn't even talk to me about URSO as I take budesonide (steroid) for AIH - I wonder if I should suggest it as I also have gall stones.
I really think you should talk to your specialist about this. Ask why you can´t have both..and read all you can about PBC and AIH overlap on the internet. If you find something interesting, print it out and bring it to your specialist.
It is not the easiest thing to do, especially when everyone else in the family eats "normal". For me it has quickly become a habit to look at ingredient labels on everything I buy. It is amazing how gluten is sneaked into a lot of products. It has really surprised me. Even in soya sauce. I guess this new diet has become my new hobby....just hope I can keep my interest for the rest of my life. The odds are not good
thanks for your notes. At least I am trying to avoid gluten free. I have already feeling better in these two weeks. With my weekly acupuncture treatment, I feel even better. I will have blood test this weekend. Hope it's improved.
It is not so that I eat tons of vegetables, raw food and have gone super-healthy.
I try to eat the same as before diagnose, but I use soya/rice/almond/hazelnut-milk instead of cowmilk, and buy glutenfree bread/rice cakes and g-free pasta etc. Glutenfree bread is really not as nice as normal bread, but it helps to toast it.
For breakfast I eat a bowl of glutenfree oat with raisins, pumpkinseeds and banana, and it keeps me full for many hours. Before diagnose I never ate breakfast, but since Urso needs to be taken with food, I have to start my day with a meal. I bought a slow-juicer and make gingershots to have during the day, as it is supposed to give energy and protect the liver.
I have a hard time staying away from sweets and when the craving kicks in I often make some popcorn instead. At least it is a treat..and it is actually really healthy if made the old fashion way, and not drowned in salt and other stuff.
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