PBC Foundation
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Young PBC New Diagnosis

Hi everyone,

So I recently have been diagnosed with PBC, but I am only 19 years old. I don't really know much about PBC so please let me know if you have any advice.

Edit: I thought it would be important to let you guys know what my labs were.

I have a positive AMA M2 and GTT test. My AST and ALT are also elevated. Alk phos is not elevated and neither is bilirubin.

28 Replies
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Hi welcome to the group selinihun. Sorry to hear you’ve been diagnosed at such a young age.

Best advice I could give you is to not google too much. A lot of the information out there is outdated and it’s a lot to take in.

Have you joined the pbc foundation? I would highly recommend it. All the info that you need to get a better understanding is there.

I’ve had pbc for just over a year and although it was quite overwhelming at the beginning- It does get easier.

And of course any questions you have don’t be afraid to ask. There’s always someone on here that can help or guide you in the right direction.

Best wishes

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Hello,

Tell us more about yourself, the symptoms that led to your diagnosis. What have your doctors said? Have you been staged? Have you started URSO? (That's the medication for PBC)

How are you feeling today?

Stella ❤

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Hi Stella :)

Thank you for your reply, I guess it would be a good idea to tell a bit about myself. This all started when I noticed I kept having this constant fever right before a surgery I was supposed to have. I went to the emergency to get things under control and they tested my LFT. They found slightly elevated liver enzymes at around 70-90. A few days later I was retested and they went up to around 400. My doctor then found that I have a positive AMA M2. My GI doctor said she is very positive I have pbc besides one factor making it a bit confusing. My ALP has never been elevated. My doctor wants to keep testing for 3 months and then maybe do a liver biopsy.

I can't say I fully trust the doctor I am seeing now which is why I joined this forum. I hear a lot of people get a fibroscan before a liver biopsy. Is that the correct path to go first? Also, when is the right time to start URSO? My doctor has not started me on it yet.

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Hi and welcome, I am new here myself and I found it very helpful to read and learn from others’ experiences, as well as asking questions. I’m sorry to hear you are going through this at such an early age, as all the statistics say this condition comes mostly to women above the age of 30. I think you should seek a second doctor’s opinion. You will also never be sure of what you have unless you do a biopsy. I’m not sure what all the numbers indicate exactly but I know a fatty liver can cause elevated enzymes. I had elevated enzymes for 2 years and when they never went down, I seeked a GI who gave me more tests, then when those tests were elevated too he suspected PBC and ordered a liver biopsy for me. Once we had the biopsy results the doctor prescribed URSO, but not before. This was 9 months ago. Like you, I read a lot and got super scared, but my doctor told me not to read too much. Now instead of reading and focusing on the negative stuff, I try to read and focus on what I can do to help my condition and how to stay positive. I am very optimistic that you probably do not have PBC, and if God Forbid you have it, you are young and you can combat it by changing your diet and lifestyle. I do think that seeking a second opinion is a good idea at this point. Good luck to you and I wish the best health.

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Have the doctor put you on urso? That is the meds used to slow down the progression of pbc. If you are a responder to urso, your life expectancy will be the same as the normal population if pbc is in its early stages.

Simply put, pbc is an autoimmune condition in which an overly sensitive immune system is attacking the microscopic billary ducts within the liver.

Urso is a naturally occurring bile that is less harmful to the liver than other types of bile in our liver. So by taking it, it decreases the production of the other biles since our microscopic billary ducts are damaged & the bile does not flow outward causing inflammation.

This inflammation manifests itself as elevated LFTs, GGT and alk phos in our blood labs. If you are an urso responder, all these numbers will decrease when you are on it.

Pbc cannot be cured, but it can be managed with Urso. People with pbc are suspectible to osteoporosis so your doctor wil order a Dexa Scan to establish a baseline for bone density. Also should check your vitamin D levels. Doctors also order fribroscans which measures the elasticity of the liver & sonograms which give a picture of how the liver looks.

Likely you will need to check in with your hepatologist every few months to monitor your blood markers & how well you are responding to urso.

Establish a good rapport/relationship with your hepatologist & discuss any concerns/questions you have with them. Always feel comfortable to ask questions. When you are in control, makes everything better.

Hope this helps!

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Thank you so much for taking the time to reply :)

My doctor has not put me on urso yet because she thinks my pbc is at a very early stage.

I do have one other question though. My ALT, AST, GTT, and AMA M2, are all elevated, but my alk phos is not. Is that possible with pbc, or could I have something else? My doctor will not put me on urso mainly because of this.

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Writing in context of my own experience. Alk phos can fluctuate & be normal sometimes even as your other numbers are elevated.

In the US, a biopsy is used to help diagnosis pbc or any other liver issue. It can also be used to stage pbc. However since a biopsy is invasive, most doctors won’t order it to stage.

Fibroscans are used for checking liver damage & it measures the stiffness or elasticity of the liver. A sonogram is used to see how the liver looks which can show if there is structural damage. Since pbc occurs at a cellular level, unless there is significant damage, fibroscans & sonograms will look normal. Therefore, a biopsy is considered the gold standard for diagnosing.

Urso is prescribed immediately after pbc is definitively diagnosed.

Per the American Association for the Study of Liver Diseases, 2 out of the 3 conditions must exist to diagnose pbc.

Recommendations: Diagnosis

The diagnosis of PBC can be established when two of the following three criteria are met:

● Biochemical evidence of cholestasis based mainly on alkaline phosphatase elevation.

● Presence of AMA.

● Histologic evidence of nonsuppurative destructive cholangitis and destruction of interlobular bile ducts.

The last one I think can only be investigated by biopsy.

I hope your doctor is able to diagnose quickly so that your condition can be treated as soon as possible.

Seems like you are in early stages & once on urso, if you have pbc, you will be just fine.

Live your life & try not to let this condition overwhelm you. Enjoy your youth & all the wonderful things in your future.

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I echo every word Ningagirlwebb said, and mostly about live your life and enjoy your youth. I will add one thing, try to stay away from alcohol. That’s tough on the liver. Good luck and good health to you 🙏🏻

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Yes it is possible my lfts were on recently raised but a liver biopsy suggested that l had had PBC for many years as my liver biopsy showed slight scaring and mild fibrosis. Im now taking URSO to hopefully slow down process

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I thought one of the blood markers for pbc was elevated alk phos very confusing

I would advise you to get referred to a hepatologist who knows a lot about pbc and speak to someone at pbc foundation you are very young to have pbc generally its between 30 and 60 i was diagnosed at 59 based on blood markers esp elevated alk phos i might be good idea to have fibroscan or biopsy

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Hi, was AMA the only one they tested for? Your LFTs are more like AIH ( Autoimmune Hepatitis ) i have this and ALP isnt usually affected. Mine was because i have pbc/aih overlap. I'm not a doctor though but its another question to ask and its more common in younger people. Easily treated too but need a biopsy for diagnosis.

Sandra

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I had a positive AMA and GTT test with elevated liver enzymes besides the alk phos and bilirubin. What tests did you have done for AIH? Im not sure but I think my doctor ruled that out first with a lab test but I'm not sure if that's correct.

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I had a biopsy done in February as i wasn't responding properly to the Urso and my consultant suspected AIH as my ALT and AST had been elevated for 2 years. I was told AIH could only be properly diagnosed with a biopsy. I started steroid treatment and 3 months in all my results are back in normal range and i feel much better.

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hello dear.I think u should begin the urso treatment.I had elevated alt, ast, cholesterol .Ggt and alk were ok.This condition was from 2012.Last year i was tested for antinuclear antibody and AMA was positive.

now after 1 year of urso 13 mg/kg each day my ast and alt are normal, bilirubin dropped a little bit, cholesterol is optimum.

My advice is to start Urso right away.

Also the diet is most important,No alchool, sweets, or anything that can harm the liver

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Hello andrei :)

Thank you for the reply. I'm glad to hear your labs have been better after urso. I'm going to ask my doctor if I can get can get started on it soon.

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morning.Please begin urso.It only slow s down the pbc.I am taking it for over a year and now i begin to thave itching.I think tha progresion exist but not as it would be without medication

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Talk to the expert advisors at the 'PBC Foundation' who host this site on 'Health Unlocked'. The links to their web site are at the top of this page.

You can access a lot of the info that is on the site, immediately, and everything there is up to the minute, simply explained and trustworthy - unlike most of the overly-scary and out-of-date stuff that is generally online.

If you then join (it's free) you get access to more of the site, as well as the Group newsletter which is written in conjunction with some of the UK's major 'PBC' Consultants. My own consultant is one of them … and as far as I am concerned he walks on water.

You can compare all your results to the details given on the site for diagnosis of PBC, as well as reading the wonderful '8-page, diagnosis synopsis' document, that the 'PBC F' produced. This is an (expert-sanctioned) summary of a much longer official document, which was thrashed out and produced after all the UK PBC experts debated and produced the formal/official (and up-to-date) guidelines to PBC Diagnosis, which is to be used by all UK medics.

Try to read as much of this as possible, and then have your results to hand and talk it all over with the 'PBC F' advisors, either on phone or email. They are lovely, learned and really helpful.

Hope this helps. Meanwhile, as someone has already said: try not to worry. Treat yourself, have fun, do things you love … stress is the worst for any autoimmune condition, so spoil yourself, while also becoming your own best expert.

Take care,

Gritty

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Wow thank you so much I did not know about this. I will definitely sign up. I'm just trying to find more information in the meantime since I don't know when I'll be able to see my doctor since I'm switching from a GI to a hepatologist.

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You are welcome - anytime!

Great to see that Robert has checked in with you. Also very good advice to get a liver specialist rather than a GI.

Take care and check in here as often as you like.

Gritty xx

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Hello and welcome. This forum will become your new home away from home where you can share thoughts and find lots of wonderful information. I have read the other replies and wanted to add some additional thoughts.

I was diagnosed 21 years ago through a liver biopsy. There were over 4 years of blood tests prior to the biopsy to establish a pattern. Frankly, I thought 1 year would have been sufficient, but 4 was the magic number then. I find it odd that a doctor would give that diagnosis so rapidly with such little data. Like others said, it might be something else. I am not on URSO...just cannot tolerate it. Guess what...I'm still here after the dread 20 yr prognosis mark established on the internet. I can fully understand being totally freaked out at being so very young and having to face such a daunting journey. I was really bummed out in the beginning, thinking I my death was imminent, but that was just my crazy head. I would definitely seek a second or third opinion. Advocate for a Hep/Liver specialist, not just a G.I.

A liver specialist will have a much broader scope of knowledge regarding what these numbers could actually mean. My Alk. Pros. has always been in the 400-600 range. That seems to be my normal. I have finally been referred to a Hep and am looking for a fibroscan, as I have never been staged. That might be because I have been asymptomatic most of the time, but more so, I believe my insurance has been the gatekeeper of this. the all mighty dollar in healthcare is tight.

Anyway...breath, stay off the internet research, and talk to us. I look forward to hearing how you are doing.

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Thanks for that great to hear you are doing well 20 years later gives the rest of us great hope

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So glad that you are doing well after 21 years!!! That’s great news. Much better than what Ive read online about life expectancy with this. I was diagnosed about 3 months ago and began taking urso last month. I’m hoping I’m a responder. On another note, I have always enjoyed drinking on a social basis. Maybe 2-3 drinks a week. Wondering is you have given up alcohol entirely? My numbers are low and I have no symptoms, I’d like to continue to indulge in a cocktail from time to time. And, I have never been told to change my diet. Do you eat low fat? Any information you can provide is greatly appreciated!!

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Morning...yes, I am one of the people who gave up alcohol completely when diagnosed. I wanted to do all I could to reduce the work load on my system. My doctors never said anything to me about alcohol or diet...all done through research and common sense. As far as diet goes, I started having problems digesting any animal products in about my second year post diagnosis. At that time, I was vegetarian about 5 days weekly. So, I gave up all animal products for a long time. Over the years I followed vegan, raw(too much prep time!), diets. Sometimes I eat a little fish, but sparingly and with digestive enzymes.

I'm mostly vegan. I do eats good fats...avocado, olive oil, flaxseed oil, seeds, nuts.

Protein sources are a challenge, but I have found protein powders I can tolerate. I just get tired of the same stuff everyday. I must say that I feel better when I'm eating clean than when I'm not. I avoid inflammatory foods, eat small amounts at a time and drink water all day long. I do allow myself one cup of really good coffee in the morning and an occasional iced tea. I found a wonder RAW GOAT MILK cheese that comes like real cheese. They make a monetary jack and a cheddar. A small piece of this alone, or grated on some black bean spaghetti is delightful.

Bottom line is this...you will figure out what works best for you. It's progress, not perfection in all aspects of your life. The best thing you can do for yourself is to not take this or anything else too seriously. Life it too short to spend in worry every moment.

Next time you're out with your friends, have an Absolute Citron tonic with lime for me! That was one of my favorite concoctions. Be well...Micheline

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My pleasure...you deserve to know the truth about your body. If it is PBC, remember we are always here for you

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Of course you would feel anxious...that is normal ❤️ You are doing the right thing by going to a heptologist. Good for you for learning so much...i am positive for ama m2 also with a normal alp. For now, I am just followed once a year by a heptologist. I have had a fibroscan, but no biopsy.

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Welcome to this forum!

Please do join the Foundation then we may be able to help you specifically and in more detail. It is unusual to be diagnosed with PBC with normal Alk Phos but not impossible.

It is also possible that it may be something else, e.g. AIH.

It might be worth seeing a specialist Hep as opposed to a GI if you can.

Feel free to PM me also if that helps.

Yours,

Robert.

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Hi Robert,

Thank you for the reply :) I really appreciate all the information I can get for now.

Selin

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Everyone seems to have Covered everything that’s important

I just wanted to say I was diagnosed with PPC 25 years ago stage one I was immediately put on urso and was lucky that I responded well my liver biopsy came back normal I am still in stage one and have only adjusted my Urso once in 25 years

the doctor told me when he diagnosed me I would die of something other than PBC. there is no problem as long as I take my medicine exactly as prescribed and see him every three to six months good luck hope to see you on this forum

By the way I forgot about it for twenty years til I started to itch and get tired lol

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