PBC Foundation
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Not diagnosed yet but most likely PBC

Hello everyone! My name is Beatris and recently I found out that I might have PBC. I am still in denial, the test came positive but I am still hoping that it's not. I have an MRI scan and a fibrosis scan due in the next few days and I'll take it from there. I am obviously really scared, I don't know what to make of it, I have no symptoms and I feel absolutely fine. I basically went for a routine test, I always do, once a year, and the GAMMA GT test was elevated (high). That's how it all started, after further blood tests the PBC came positive.

I am a strong believer that food is the best medicine but I really don't know what diet is best for someone with PBC. Is this an autoimmune disease? A paleo diet would help? Is anyone following a diet that actually works? I know if won't cure the PBC but I am confident that can help massively.

I would also love to meet people with PBC, do you know if there is a group in London that meet and talk about it? A support group (not only online) would be great.

Many thanks.

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Hi Beatris,

Sorry you have to experience all of this. I, too was skeptical about having anything wrong with me. But you can’t argue with test results & medical expertise. You are probably stage 0 or 1. So here we are...

There is no specific diet for pbc. My hepatologist just told me to continue eating a healthy diet which means low fat, low sugar, low sodium, basically a stay away from processed foods lifestyle.

Once you are diagnosed, urso will be prescribed for you to delay the progression of pbc, which is an autoimmune condition that can not be cured.

My hepatologist told me many times, including at my last visit that when diagnosed early & when you are a responder to urso, life expectancy is the same as the normal population.

This will take time to sink in, but on the bright side it was discovered early for you & shouldn’t hinder your life. Makes you appreciate everything in life even more.

Find a good medical team to help you manage your health. Ask questions & take charge. Leave the worrying to your doctor. Think of taking urso as you would a vitamin & live your life! You will be fine.

Hugs,

Haley

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Thank you Haley :) I am trying to stay positive but it's not easy.

I've read a lot about dieting when you have PBC and it's so confusing...some are saying no meat, we should all go vegan, no eggs, no diary, no grains, no legumes, no seeds and nuts, easy on the fruits because they have sugar...what's left? If it's an autoimmune disease, we should follow the AIP diet. It's so strict though!

I've asked my doctor, he only said that I should try and eat a healthy diet, but they all say that. I think we can do a lot more but I don't know what.

Since the test came positive, I find myself thinking about staff I want to do before I die. I am no longer worried about retirement, 2 months ago all I was focused on was save save save for old age. Now I'm thinking spend spend spend because I don't know how long I have left.

I'm 38! If you don't mind me asking, how old are you and when were you diagnosed? How long did it take you to accept and get on with life?

I'm telling you, I feel completely lost! :(

Thank you.

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It’s been 4 years since diagnosis. I am a few years older than you. A whole lot more of life to enjoy!

We should still save for retirement, but we should not be miserly to ourselves. Do what makes you feel great. Treat yourself to whatever you want if reasonable. Have fun!

It took about 6 months for me to become calm about all of this. A lot of that has to do with my hepatologist. He told me to let him do the worrying about me because stress makes any autoimmune condition worse. He goes beyond what most doctors typically do for patients & for that I am so grateful.

Relax & enjoy the weekend. You can’t control this & worrying is not going to do anything except give you stress.

Haley

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Thank you Haley! Your words of encouragement mean a lot to people like me, who are in complete shock and disbelief. I can't help but think, why me, why you, just why?

Your hepatologist sounds lovely. I haven't met mine yet, I've only met his assistant. I guess I'll meet him when I'll go for the MRI scan, I'm not sure. Are you in London? If you are, what's his name? Can I have him? :))

Have a lovely weekend and once again, thank you! :)

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No, I am in the US. It’ll be fine; you’ll see.

Sometimes there are no answers. But I know your state of mind right now. It is natural to go through these lost feelings.

I exercise & keep a journal. It helped me as well.

Cheers!

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Hi. Which test are you talking about that says you may have Pbc?

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The AA M2 should be between 0 - 6 (in UK) mine is 220

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Mine is very high too but they won’t diagnose me. That’s why I was asking. I have an enlarged liver as well. My only good thing is my liver function tests are within range so I have to basically wait until I’m at the point where I need medication before they will do anything. I go back in a year to have a fibroscan and more bloods. I wish you the best of luck. I hope you are ok 👍

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Hi,

Normal reaction to the diagnosis. Glad you reached out for support, it can really help coping and managing. One thing to hang on to-- they catch it early, URSO slows the progress -- meanwhile there is incredible research going on regarding Auto immune diseases in general and PBC. Because of your age-- you will benefit from break throughs. I believe within next 10 years they will find ways to "switch off" the auto immune attack. ( not just for PBC but MS, crohns, lupus etc)

In the meantime do what you need to do as you get used to the diagnosis.. took me a good year to really let it be ... and just live each day with gratitude and hope.

Hugs to all.

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Thank you Eileen for your reply. For the time being it feels like I have a ticking bomb in my body waiting to go off. I have no symptoms yet, just some bearable liver pain occasionally....no itching, no fatigue, no yellow skin....these symptoms that people have scare the heck out of me. I've always been healthy, no visits to the hospital and suddenly I find myself spending so much time in hospitals.

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Was your alk phos elevated also i think with pbc elevated alp and ggt are blood markers for pbc

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Hi there...the serum alkaline phosphatase is in normal range, the serum ALT is elevated and the serum gamma gt is also elevated.

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Doesnt sound like pbc if alk phos is not elevated from reading literature on pbc it would appear that alk phos is elevated your hepatologist will know my alk phos and ggt were elavated when got diagnosis of pbc

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But the AA M2 is positive

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I didnt have biopsy ultrasound and fibroscan the doctors place a lot of value on blood markers alp ggt alt ast when making diagnosis of pbc i have positive ama negative m2 its a strange disease pbc i take urso and i dont dwell on it i am asymptomatic i would never know i have pbc if it werent for the blood markers

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If I were you I would insist on an MRI scan and the fibrosis scan. If u don't ask, u don't get. I've only discovered that there's something wrong with my liver because of a routine test which wasn't done in UK because they wouldn't do it just like that. You have to go with a problem in order for them to take action.

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I had a fibroscan done but not an mri if the blood markers improve i think thats a good indication that we are urso responders

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My alk phos fluctuated over 2 years, mostly normal; sometimes slightly elevated. That’s why doctor said we need a biopsy.

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Did you have a biopsy done?

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Yes; I didn't want to do it at first when it was suggested by my GI primary care doctor. He sent me to the hepatologist who promised me we won’t do a biopsy unless absolutely needed. He did very in depth blood tests. Then he suggested the biopsy to get to the bottom of it. This happened over 3 months.

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Have you joined the pbc foundation, the link is at the top of this page. They have up to date information on pbc and excellent advisors you can call. I called them 8 years ago when I was first diagnosed and didn’t know where to turn and I can honestly say I don’t know where I’d be now without that call. Give them a call you won’t regret it, They have support groups all over the UK and will be able to put you in touch with one in London I’am sure.

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I've joined them. Thank you. Since you've had it for 8 years, can you give me some advice on the diet? Besides alcohol, what did you completely eliminate? Can we still have a slice of cake or a pack of crisps once in a while or are these out of the question for the rest of our lives?

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Its not an easy question to answer, I don’t follow any diet except to say I have IBS that is triggered by lactose and wheat so I don’t have those for that reason now. But I’ve not eliminated anything else.

I asked my doctor early on about foods and was told to eat a healthy diet which I do, or try to do. And to be sure to speak with her before taking any supplements so she could monitor my bloods knowing what I was taking..

And yes I still have cakes, biscuits but I bake my own wheat free due to IBS and can you believe I’am just eating a plain packet of salt free crisps (salt free because of meneires disease) there a treat now rather than daily, purely because I try to balance my carbs, fat and protein since loosing weight.

But I feel well and thankfully I don’t have have the itch. I do have some fatigue but if I go by my consultants diagnosis on that, it’s not related to my pbc and is from the fibromyalgia.

I think the best three things I did which I only did recently was to loose the weight I’d put on and exercise, just exercise bike in the morning and walking 3/4 miles a day. I eat four small meals a day rather than a large dinner, I found that the upper abdomen pain I was getting disappeared I think it keeps things moving so to speak. And I am not so fatigued and my blood sugars are more stable. Try not to worry, I see Robert has replied to you, give him a call after the weekend you will feel so much better for doing so. Take care.

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Thank you thank you thank you. I'm so glad I can still eat a slice of cake once in a while. In fact I'm baking a banana cake today with no sugar and no flour. Went shopping, spent a fortune in order for me to bake a "healthy" cake (maple syrup, coconut flour, pure vanilla extract....so expensive 🤤). This healthy eating will break the bank...most definitely I'll die extremely poor WITH PBC and not FROM PBC. 😉

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My hepatologist told me to eat normally i dont take alcohol and be careful with over the counter medication and supplements i just take urso

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Beatris, do as Candy12 says join the PBC Foundation , they will send you all the information you need . I believe their London PBC volunteer holds meetings in Charing Cross , too far from me unfortunately , I live near Ealing.

Try not to worry , my consultant told me that " People die WITH PBC not because of it " .

I was diagnosed 8 years ago , I'm 65 , the only symptom I have is an occasional stabbing pain in the liver area as I eat.

The only advice my Consultant ( Hammersmith Hospital ) said was to take an Omega 3 supplement and eat foods rich in Omega 3 and eat a balanced diet

........be prepared though, some of the Docs know little about PBC ......twice at my 6 monthly check ups I have been seen by Registrars and asked if I had stopped drinking !!!!!!

Hopefully you will see the Consultant who will explain everything to you .You will then have to have blood tests every 6 month to check your numbers and yearly Fibro Scans ( I go to St Marys Paddington ) and a yearly ultra sound .

Good luck , it took me a few months to learn about PBC and realise I had to live my life as before , and to live life to the full, as I did before I was diagnosed,

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Thank you for your kind response. It does help talking to you all. I've already joined the PBC foundation, I'm now waiting for them to accept my request.

I can't help but worry, I'm overwhelmed, I wonder all the time if the food I eat is good or not for me, if I sleep longer than 7 hours, I wonder if is because of the PBC, I'm constantly checking the colour of my skin and asking my husband if I'm yellowish.....yep, not doing very well.

I need some reassurance from my doctor as well and I need to know exactly what I can and what cannot eat. That's another worry I have, what if for my doctor I'll be just a number, I need a doctor who cares, not just give me some medicine and off you go. When the blood test results were sent to my GP, she typed a letter to the liver specialist and in the letter she said that I need an MRI scan to exclude the diagnosis of cancer. When I've read that letter, I almost fell off my chair, started shaking, crying...no compassion or reassurance from her.

I'm glad you're doing well, I hope to learn to live with it sooner rarther than later. Hugs to you.

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morning.this is normal to feel like this.We all felt the same.I had modified lft from 2012 (30 years)After 4 years and no response from treatment in 2016 at 34 i had my ama elisa and was positive.From 2017 i am on urso 1000 mg per day plus vit E plus spirulin so this diesese can appear at any age.I saw last days on this forum a new member with pbc at 19 yrs old.I am 35 now.

take care.take urso and maybe u will be a responder.If not u will take ocaliva.Stay away from salt, sugar and fat.

all the best

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Hi Andrei! Thank you for your reply. Much appreciated. When you say stay away from sugar, salt and fat.....did you take them out completely? Don't you use salt when you cook? Can we have honey, sweet fruits...the liver doesn't know if the sugar came from a biscuit or from an Apple...sugar is sugar. 😩

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:)) after ama result i did not eat sugar 3 -4 months.After that my result were better.Now i eat them but in small quantities.

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Hi, Beatris.

Welcome.

We have lots of technical information. We have lots of support tools. We have a HUGE number of people in the UK, with a regular meeting group in London.

But for now I want to tell you this: my mum was diagnosed at 38. This was 24 years ago. She is still alive. She still works. In fact, she is CEO of a global charity. Oh, and she still keeps me in order!! ;)

Yes there will be more questions and we can answer them as they come. But for now I wanted to share that with you.

Yours,

Robert.

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Hi Robert! You managed to put a smile on my face.😊 I'd love to meet people who are going through this. 👍

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Hi Beatris, we PBC victims know what you are going through we have been there. I was diagnosed over 10 years ago and am luckily a good responder to URSO still at stage 1, the secret is to have a good Hepatologist and GP mine are great. You could call or email British Liver foundation who gave me great help and as has already been mentioned the PBC foundation are really helpful. There are a few meetings that are held around the London area depending where you are, unfortunately I am in West Yorkshire but have no one in the area to organise meeting groups, there again the foundation can advise you. Cut out alcohol and eat healthier and easy to say but don't worry, you will not die of PBC but it will be with you for the rest of your days. Good luck,

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Thank you for your reply. How exactly can the British Liver Foundation help? For the time being i only had the AA M2 positive, after the MRI scan and the fibroscan I might have a few questions to ask.

How's your diet? Do you use salt in food, do you eat legumes, dairy, red meat, carbohydrates ....did you take anything out of your diet? Are you taking vitamins? Since it's an autoimmune disease, I read that we should follow the AIP diet, the autoimmune protocol diet which is very very strict. Hugs to you.

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Good Morning Beatrix

It is morning here in Canada.

I hear you. When it was confirmed that I had PBC I was terrified as well. Seemed like no matter what assurances I got, I was sure that I was not going to live long. I think this is a normal response when a person hears that a major organ in our bodies may not be working as well as it should be.

But the liver is a very tough organ. It can regrow even after having part of it removed. PBC is now very well controlled with the drugs that have been developed, and as we speak many more are being trialed.

I am 71. I’m still very active. I do not look sick, so people often do not believe me when I share that I have an autoimmune. I’ve had symptoms- increased liver enzymes since I was about 50. (Probably even before that, but they were not checked.) but it took a long time before the doctors decided they best figure out why I consistently had increased ALP. Finally, I was diagnosed.

The long and short of it is- if you are feeling okay. Live your life. Keep your appointments, eat healthy. I do not follow anything for a diet except making sure I eat from all food groups. I do not have any alcohol. (Have not for years) . Take only medications that are prescribed. If I need any supplements. I trust my speculalist to let me know.

If I feel like cake and ice cream I eat it. I am however, gluten free. I try to keep my weight at a good level, by exercising and eating well. So do not eat cake and ice cream a lot, unless I feel like a run to get rid of it. Lol.

Sounds like you are in good hands with your doctors. Trust them. Take a deep breath. Worrying and stress is one of the things that can make any illness worse, so try to keep busy, enjoy the things you like to do. Eat what makes you happy and you enjoy. Just don’t eat unhealthy all the time. But that’s good advice for everyone.

I’m a retired nurse. (I worked until could take my retirement)

I hope my few words have helped. One thing I did was, get some relaxation/meditation apps for my IPad and those helped me become more focused.

Jeanette .

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Great advice 👍🦋

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Awww Jeanette, your words helped massively❤❤❤. They've not only helped me, but my mum as well who's extremely worried about me. I tried to keep it a secret and not tell my mum but I couldn't. I share everything with my mum and somehow a mum "makes it all better".

I should print your reply and put it on my fridge. Every time I shall feel bad, I'll read it. Great advice, may God bless you, I'm sure you were an amazing, very much loved nurse. I wish you lived in London, we'd be great friends 😊 Thank you. Have a great day!

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Thank you.

You made my day.

Jeanette

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Regarding AI diet... don't overwhelm by trying to make every change at once. Try some things that are doable for you. Cut out fried food or add more more veggies to daily diet.. reduce added sugar in your diet... see how you feel with the changes.. we all learn to listen to our bodies. For me personally my specialist told me to lose 10-12 lbs. A lot of that was belly fat and belly fat is very hard on the liver.

I also do my best to do 35-40 minutes fast walking 5 days a week. It helps physically and mentally. As others have said - you have every reason to stay positive and eventually the shock wears off. You're gonna be ok! Enjoy the day.

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Thank you Eileen. Much appreciated 😊

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Be positive

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Hello. I was napping. Lol. Im 61. I was diagnosed 5 yrs ago. When I asked about diet they said no shell fish. Im tired, hate going to the bathroom. Lol. My side is hurting more. My liver is a little enlarged. Your a young one. But you will be fine. Doctors are not to good at giving information. Keep us up to date. Blessings in Jesus Christ name.

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No shellfish? Hmmm...I wonder shy? Is fish ok though? And why do u hate going to the loo? 😨

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Hi Beatris03

Welcome to our club! Sorry you may have joined us, but as someone else said, it can really make you appreciate life and live it consciously and with joy, which is a great gift. Really.

Regarding diet - there's no evidence that fine-tuning it to such a degree influences the outcome of PBC, just an average healthy diet is fine. Please don't torment yourself with this, because being relaxed is more helpful for your immune system. We like to give ourselves the illusion of control because it's comforting, but it is an illusion! Just take things as they come, exercise moderately preferably outside, do the things you enjoy and you will soon feel calmer.

We've all been where you are now, so be reassured that we know this phase will pass. You're still you, and I can tell you're a lovely person and a great communicator - you've responded to every person who took the time to write.

All best wishes my dear.

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Thank you for your kind reply. I appreciate every single person who took a few minutes out of their time to reply to me, I owe you all for being so nice and offering such encouraging words. I shall do the same for other people, obviously when I'll know more about this condition and I'll be fit to give advice.

Best wishes to you too and don't be a stranger, your words are comforting 😊

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After 2 years of high liver enzymes, I am having a biopsy a week from tomorrow, and then, of course, it's waiting for the results. It's the waiting that gets me. It took months to diagnose my husbands non-Hodgkins Lymphoma, and I wound up in the hospital for 2 nights from the stress. I will try very hard not to worry myself, and if there is something wrong, I will come to you wonderful people for advice and support.

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I know what you mean Louise. This waiting game is not easy to manage. We have to stay positive though, keep busy, keep our minds busy and do things we enjoy. We're not helping ourselves by worrying. Easier said than done, I know, but we owe it to ourselves to try. I'm having and MRI and a fibroscan done very soon as well. The sooner we know what's wrong, the better. Best wishes to you!

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Thanks for responding! Best of luck to us both!

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Hello Beatris,

I completely understand the fear. When I was diagnosed it was not broken to me in a good way. I subsequently scared myself into a complete nervous breakdown. This was ten years ago now. I have been mostly fine and only recently been having some issues with itching. This condition is so treatable. It is not a terminal illness. We are all different and we all progress at different rates. In my case, it has been very slow and completely manageable. I have been on urso since the start. It seems to work as a protective thing. My scans have been pretty good, with no significant cirrhosis. My main advice would be to focus on being well, and g wrt yourself a good specialist who shares information with you. Many people live perfectly normal lives with pbc. It is always a shock to be diagnosed with a disease. I have three autoimmune diseases. I go to the gym four times a week, eat healthily, and love life. Don't let it scare you. Xxx

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Thank you for taking a few minutes out of your time to reply to me. There are so many nice, understanding people on this forum. You get me, you understand my fears and my worries. Once again, thank you. I'm not gonna lie, I'm scared, I'm angry, I'm upset. I can't focus, PBC is all I'm thinking about. I guess I need time to process everything that's happening. I cannot wait for those scans as well, the sooner I know, the better. Best wishes. Xxx

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I was exactly the same Beatris. So anxious and afraid. But, life goes on! Recently I have been a bit obsessed again, due to the itching suddenly occurring. But, it is under control now. I think we all fear the unknown, and like to think we can control our lives and health. But, we are so lucky to be living in the 21st Century. Take care, and remember you have support. You will be ok.

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Hi Beatris. First thing to say is you've done the right thing in getting in touch with the PBC Foundation. They have loads of information. Like you I thought the bottom was falling out of my world when diagnosed, especially when I did the usual and 'googled' it - very scary stuff but not balanced with the reality of what this condition actually means for us as individuals. I've been lucky to have a GP who's very familiar with the condition and he picked it up after I went complaining of ongoing fatigue. I thought it was either down to my hypothyroidism or low iron levels (that was common for me in the past). He was really on the ball though and got all the relevant tests done and the GGT was the big kicker. At the end of the piece I was diagnosed formally by the liver unit in Kings College Hospital and put on urso.

Since then all my liver tests have come back normal(yippee!). At diagnosis they carried out a fibroscan that showed there was definitely fibrosis (came out at 10.4) - that really brought it home to me for sure. Since then though I've reduced alcohol substantially, even though I wasn't a heavy drinker, but still have the odd glass of wine, and got my act together on the exercise front and have more recently reduced the amount of fats in my diet (also got told I have a mildly fatty liver ... more ughh!!). I just had another fibroscan done a couple of weeks ago and whilst the mildly fatty liver is still there (damn!), the actual fibrosis has reduced considerably and it's much closer to the norm (which is anything <7.0 I think) at 7.9. I put it all down to the exercise. I'd also seen a spike in my cholesterol which went from a pre PBC level of 4.8 to 6.6. I put that down to the PBC but the reality was that it coincided with me getting a bit lazy and not exercising much, after being a regular at various keep fit activities. So since I've got my self back to doing regular vigorous and varied exercise sessions it's back to 4.9.

My dietary change was primarily aimed at the fats as I have very little salt in my diet anyway and eat very little processed food (unless unknowingly). All in all I just follow a healthier lifestyle and don't cut out all the good stuff - just make sure it's a treat.

I'm now 58, diagnosed in 2016 and I was told all indications mean I'm in a low risk category for disease progression. Ultimately, it's just something to be aware of and make healthy eating and lifestyle choices. I'm lucky I'm a responder to Urso and I have no other symptoms other than the fatigue. It sounds like you're lucky you discovered it so early too - although it doesn't feel that way just now. Take heart from all the great support here and huge knowledge base that's grounded in real experience and not just the scary stuff on the internet. Plan your like normally - I'm lucky to be in a place where I can enjoy my early retirement and have no real stress in my life. But even though you're a bit younger, alright, ALOT younger, you can have your normal life with minimal impact of the condition. Have fun and the odd bit of cake! Adele

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Hi Adele! Thank you for your encouraging words! Can i ask...what is the meaning of fibrosis? How badly affected is the liver? Is that what it Is? And do you ever feel pain in the (liver) area?

I'm glad to hear that your liver tests came good. X

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