PBC Foundation
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Highly likely I have PBC and scared it’s stage 4

Hi everyone, I’m a newbie in need of some reassurance!

I have raised liver enzymes which has been raised for 3 years but remained stable so my GP wasn’t too worried. However, recently it raised quite a bit so he did a full liver screen and found I tested positive for a liver antibody (presumably AMA). My GP then spoke to a hepatologist for advice who both agreed that I may have PBC. I’m currently waiting for an appointment with the hepatologist but found out this week that the waiting list is 33 weeks but I’m not sure if I will be seen quicker as my case has already been discussed.

Anyway, my story behind the fear of being stage 4.

12 years ago, I tested positive for anti-mitochondrial antibodies (I assume that’s AMA) but after a referral to a rheumatologist, I was discharged because I eventually tested negative for the same antibody.

For years, I have had unexplained fatigue. I believe it’s been unexplained but doctors have put it down to my blood disorder (I have low platelets, B12 deficiency which I have injections every 12 months for, and now and again I’m anaemic and need iron). When my iron levels go back to normal after treatment, I never feel any different, hence believing my fatigue is unexplained. The same goes for when I have my 3-monthly dose of B12, nothing changes.

I was also diagnosed with postural hypotension 12 years ago and the dizziness on standing can get quite bad. I’ve read that dizziness on standing can be a symptom of PBC.

I recently went into hospital to have my appendix removed. I had a CT scan to confirm appendicitis and the scan report (which I somehow managed to get my hands on) showed my liver to be minimally enlarged. I questioned doctors about this, but was reassured it was nothing to worry about. I also had an ultrasound which showed my spleen to be enlarged (I can feel it under my rib). Doctors put this down to having a nasty infection with the appendicitis and I was advised to give it a few months to settle down.

The enlarged liver (although only minimally) and the enlarged spleen is what prompted me to head back to my GP. I told him I wasn’t happy with those scan results and want further tests. Because of the raised liver enzymes, the liver screen was requested which then showed positive liver antibody (I assume to be AMA as that was raised 12 years ago).

So, the reason I’m so worried about being stage 4 (even though PBC has not officially confirmed) is because I fear that the years of unexplained symptoms is down to that and the enlarged liver and spleen, both quite recent, are signs that my liver is quite damaged.

Am I worrying too much? I’m now starting to get paranoid and every little abdominal twinge I feel (I have IBS - unless that’s a misdiagnosis!) is now liver pain!

I’ve just turned 34 and am otherwise quite healthy. I’ve got 3 young kids and want to stay healthy. So all this uncertainty with the high likelihood I have PBC has made me completely anxious. ☹️ I’m even starting to wonder if I will see my kids become adults, meet my grandchildren (if I have any!) and will I be around long enough to enjoy retirement?

It’s good to read so many positive stories on here, but until I know exactly where I am, it’s difficult to be positive about myself when I feel it’s gone untreated for at least 12 years! Hope someone can make me feel a bit better (!)

Thanks in advance. xx

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Hi,

Sorry about everything you've been through. Especially the stress you're experiencing now. Many of us have been there. Hope the friends on here can help rest your fears a bit. I'll share the little I know. Fatigue is definitely a PBC symptom. Raised liver enzymes like AST, ALT and Alk-phos too are also associated with PBC but not always. Two out of three markers are needed to be diagnosed with PBC. For me it was a positive AMA-M2 and a raised Alk-phos.

Many complain of itching but I haven't experienced that yet. I had a raised LFT (liver function test) for years too, possibly 8 years. I wasn't diagnosed until 2016. There are tests that need to be done in order to stage a person. A Fibroscan is very useful in determining the texture of the liver. A lot of doctors still do biopsies of the liver, I had one. And still others reccomend having a ultrasound. From what I've learned, getting a "Fibroscan" is now the way to go. The other tests aren't as conclusive. Many on here have had all 3 tests.

Try to find a good hepatologist that is educated in PBC. I've learned that many doctors don't know much about it. For instance, I've had a raised AMA-M2 along with a raised Alk-phos for 8 years as I mentioned yet none of my doctors caught it. During those years I had several surgeries for several other problems but, even with all those blood draws and scans etc. they never caught it. A bout with gastritis sent me to a GI and she caught it.

Remember that PBC is a "slow" progressive disease. Taking the medication for it makes the progression process slower yet. That's good news! ❤

If I were you, I'd get myself a good hepatologist who believes Fibroscans are the gold standard over biopsies. Or at least a doctor who covers all bases and requires both.

Don't stress. I know that's easier said than done. Knowledge is power. Read all you can on this site. Join the foundation above too. Continue to ask questions, especially with your doctors. Remember, they work for you. If you want a Fibroscan and they only want to do a biopsy.... then find a doctor who will do what you ask.

I'm sorry you have to be here at all but, you've found the right place. You're not alone. Just remember PBC isn't a death sentence. It's a new normal for sure but there are things to be done in order to get help and feel better. Should you find you are further along in this PBC journey, there are still things to be done to help you. There are some on here that have had liver transplants too. They are alive and telling the rest of us how they are doing and how they are feeling. The ones I've read about are feeling good and definitely feeling grateful.

Keep us posted how you are and what you find out. Take a deep breath. Give yourself time to wrap your head around everything as you find out what's really going on in your case.

One step at a time...😌

Stella ❤

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Hi Ktltel, so when you said there has to be at least 2 out of 3 to be considered PBC... Do you think I have PBC, AMA was negitive, but M2 positive. Only other one was slightly elevated LFT. All other blood tests were normal. What else could it be, if it's not PBC? I'm having to wait 2 more months to see a hepatologist so my anxiety is over the top right now.

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Hello, I totally understand your stress. It takes time to calm down and get used to the idea of having this autoimmune disease. And you are quite young with little ones❤.

As far as knowing if you have PBC I can't say. But I was told they do make a positive diagnosis with just 2 out of 3 markers. You said you have more than one raised LFT? And you have a positive M2? I was told I was positive with having raised AMA-m2 and as I said, a raised Alk-phos. You mentioned you're negative AMA. I do know on this site there are some who have been diagnosed with PBC who are AMA negative but have raised LFTs. Its a weird disease. We all have some things in common, and other things we don't. Please, please.... try to be just who you were before this happened. Maybe be a bit more conscious of taking good care of yourself. Eat right, watch salt and sugar intake as well as fats and carbs. We all should do that anyway. How are you feeling? I can't believe you have to wait so long until you know for sure. I had to wait several months before I saw a hepatologist too. But it was my Gastroenterologist who diagnosed me and started me on Ursodiol. It's been 2 years in October that I've been diagnosed. The first 4 months I was such a wreck. I was prescribed Xanax. I'm much better now. ❤

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Thank you for responding. This is so scary for me so it's so nice to have someone to talk to. I haven't been feeling well and it has me very worried. I get extremely bloated after I eat and my tummy pushes out so bad. I have stabbing like pains in my liver area that wraps around to my back. I also have had very orange stool and when I wipe it's very bright yellow. I think that's the one that scares me the most. I have no energy on some days and now I'm getting cold chills ad sweating at night when I sleep. I am almost 48 so that could possibly be related to starting menopause.

I barely go pee anymore and I'm so constipated which isn't normal for me. So I just don't know what's going on. I think I've had this disease allot longer through out my life. But I'm trying to stay positive.

I really appreciate you talking to me, thank you so much :)

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I understand❤.

Try to get in to see your doctor sooner. Be a squeaky wheel. Call and ask to be contacted if someone else cancels their appointment.

Autoimmune diseases like to run in packs. Your other symptoms sound as if other things are going on. You need to be checked out to make sure.

I was diagnosed with PBC and soon thereafter RA and Dequervains tendonitis. Painful. I'm on Ursodiol and Sulfasalazine.

I have that yellow tinge in my stool as well. As I mentioned, watch your salt intake. Too much salt can cause bloating with some.

This all comes down to the fact that you just need to be seen to be absolutely sure whats really going on in your case. The only thing that's gonna take those nerves away is actually knowing what's going on and getting on the meds to make things better.

I'm a woman of faith. I pray. If you are too, pray for calm. Pray for answers and peace of mind.

Keep me posted.

Stella❤

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Thank you so much!! Your right, I need to just try and relax and hope for the best! I called this morning and low and behold they had a cancellation. I go in tomorrow morning. They are doing the fibroscan then too. Thank God!

I pray that everything turns out alright. I appreciate your help. I'm allot calmer now.

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Let us know how things go❤

Stella

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Hi there ,

So I just found out this last week that I have Fatty Liver disease and a Positive AMA with PH being 152 and ALT elevated and one other ...I have an appt with a gastroenterologist on July 25th for a colonoscopy and to possibly diagnose me with PBC ...my dr seems concerned but not telling me much until after my Gastro appt.

I have been so emotional I can barely eat this week I’m scared confused and everything your feeling ... I have 3 small boys that I want to be active with and the fatigue I have doesn’t always let me ... this has all come on the last year and since I’ve been in full menopause for a year now I have chalked everything up to that until this constipation bothered me so bad the last 5 weeks that I made my own Colonscopy appt to make sure I don’t have polyps and schedule a dr appt to check my cholesterol and thyroid ... and this is where I’m at now ... I had never heard of this before and was the last place I’d thought I’d be when I went in for my appt .... I guess what I’m trying to say is I have no answers for you as I’m in the same boat but I’m here if you ever need to chat from one scared momma to another ... hang in there ♥️

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Hello and welcome to the group.

Stella has given great advice and until you see your hepatologist you will be in this limbo stage. I am guessing that you are in the UK and that is the reason for the wait. You have had quite the journey to get to this stage and unfortunately it is not uncommon. Many of us have waited a long time for diagnosis but once on treatment (Ursodeoxycholic acid) our outcome is the same for the rest of the community.

My story is that I presented with itching around the mid nineties and it was all dismissed without any blood tests etc. The doctor did suggest depession which apparently is not uncommon. Around 2006 I had a different problem and PBC was diagnosed almost as an aside. I saw a GI who prescribed URSO and I started to feel better. I was dismissed from the care of the hospital after about 4 years and went on taking the URSO until another problem arose some 8 years later and the GP said "people like you really should be under a specialist". As the waiting list was long and I was so desperate with the "itch" I paid privately to see the hepatologist who very kindly got me on some treatment and as I did not have insurance put me on his list to see him under the NHS. There is a great deal more to the story but I have cut it a bit short.

I have pernicious anaemia and the 12 weekly shots were not enough. I negotiated with my GP to get it down to every 8 weeks which I feel has helped. With PBC it may be that you are not getting vitamins A D E and K so a multi vitamin may help you but discuss this with the specialist. Mine was okay with the vitamins that I take.

It is good to read that apart from your difficulties you are well, this is a good start. Try to eat a good healthy diet rich in vegetables low in salt and sugar. Keep red meat to a minimum. There is some dietary advice for specific liver condition on the British Liver Trust web site. Also in the compendium of the PBC Foundation (members section) you will find a great deal of information. The web site for the PBC Foundation is free to join and back copies of the Bear Facts magazine can also be found if you have a moment to read them as I suspect you will be busy with your children.

There may be a support group in your region, if I am right and you are in the UK then you can find this information from the PBC Foundation.

One thing that most of us agree on is that stress is not good and worrying can bring us very low. Try to concentrate on that well feeling that you have and enjoy your family while you wait. One thing that I read which helped me in the very beginning was that we are more likely to die with PBC than because of it. One patient was a woman of over 100 years of age who died with PBC not because of it - it gives us hope.

best wishes

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Hi Rachie34

Where in the world are you?

I would invite you to call us and speak directly.

We can Skype or FaceTime using data if you are not in UK.

Yours,

Robert.

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Hi, I am in the UK. Thanks for the offer to call you directly but I'm Deaf, so can't hear the phone! Discussions on here works for me, and I'm already feeling a bit more positive. :-)

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That is good to know, thank you. Happy to chat using Skype if that helps.

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hi, please don't assume the worse...

i have found for myself that when my body is under pressure e. g. illness, stress, both physically and emotionally tends to make the liver function tests worse.... mine have been up and down quite dramatically over 19 years of diagnosed pbc... before that I had symptoms for at least another 10 years... but didn't know what it was as it was mild...

i was then ill whilst pregnant with my fourth child and had glandular fever... my ltfs were way off the scale.

my baby is now at uni.

at that time I was told I was 3/4stage...so its not very Accurate... so please don't panic that it may be worse than it may be.

i had a transplant last year after 19years of fatigue etc... no all that time hasn't been easy but our 4 children are doing well... the eldest is 28 and a daddy...

yes ive made it too grandma status... lovely...

treat yourself kindly eat well, rest when you can and delegate little jobs to your children... even if its putting a few things away or putting a damp cloth around.

mine learnt to feed the cat, change their beds, lay the table... even a 3year old can put a few mats on the table...

its done them no harm and they are stronger people for helping...

please enjoy your family and don't worry about what might or might not happen for 30/40years or never.

at my diagnosis i was told probably 5 yrs and i would need a transplant... 18years later i did have one... but as you can see its all so variable!!!

also there are now treatments.. e. g. urso

i which you all the best... but please try to stop worrying about tomorrow and enjoy today. cazer.

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Good morning and welcome to your new best friends. Each one of us has been right where you are today...unsure, lost, panicked, questioning everything! It will pass. I'm sorry to hear that at such a young part of your life that your health is less than great. With that being said, PBC usually doesn't show up in people your age. Not that it couldn't, just statistically doesn't present until later in life.

We do tend to worry, don't we? Stomach ache is always cancer, headache is a tumor, foot pain requires amputation...you get it. Our heads tell us stories based on too little or too much knowledge. I have an ongoing love/hate relationship with the amount of information at our fingertips, so try not to give too much credence to internet info.

My PBC was first noticed while doing some labs for a medication I took after a car accident. LFT's never went down. So about 4-5 years later, I had a biopsy to rule out other things and PBC was diagnosed. I am allergic to URSO, so have turned to natural remedies over the last 20+ years. My fibroscan last week showed a "normal liver". I was expecting some fibrosis, but much to my surprise, I was wrong. My AMA was also normal. I feel good on some days, ok on most, and lousy on some. I eat very clean, rest when I need to, practice my yoga, keep the news off, and play when I can.

In my humble opinion, you've got yourself way too ramped up over what may or may not be. Stay in the day...find a power greater than you to guide you, and be ok with who and where you are right now. I look forward to hearing what happens for you in the future. Until then, be well and stay close

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I’m impressed to read you’ve managed this on diet alone, can you tell me what that entails? Have you gone Veggie or vegan? Do you take other herbal remedies and vitamins? I have managed to get my LFT’s back to normal in 5mths on urso but also went mostly veggie and take vitamins, I’d be interested to hear how you achieved it without the urso

Thanks Sylvia

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I'm interested to know more about this too - as I have to wait to see a hepatologist, it would be good to make changes to my diet and feel like I'm doing something positive. x

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Good morning...I don't know if it's diet and supplements alone, but I'm glad I made the changes I did. I do not drink alcohol or soft drinks. Mainly water and some unsweetened iced tea. I have been on and off of coffee several times, but currently I drink a cup or 2 of great java in the morning. I have tried RAW, vegan, vegetarian, pescatarian, you name it. I have some bottom lines of what I refuge to eat. Definitely cannot tolerate meat, pork, chicken. Sometimes a little fish, but usually regret it. I stay away from any processed foods, most grains, sugar, cow dairy, and soy. I try to keep away from foods that cause inflammation as I find they bother my arthritis and cause be gastric troubles. As far as supplements go, I use D3, E, Fish oil, Turmeric(that's new for me), B17, B complex, milk thistle, Livaplex, an antioxidant drink, electrolytes. I also have and use a Lanta-Z which is a medical device from the Soviet Union.

I just had another LFT panel draw last week and am waiting for the results. The odd thing is that my LTF's are always quite high. Never go into normal or close to normal range. My bilirubin is normal, fibroscan normal, and AMA is negative. Doctor thinks I have negative AMA PBC. I think there may be more to this story than meets the eye

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Hello Rachie , sorry you are feeling the way you are, I was diagnosed about 9 months ago , and have felt very worried too. I can say this forum is wonderful , and all the advise from the people from your replies are so reassuring . They have been so helpful to me the last few months . Hope you start to feel a little better soon .

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Hello,

I have somewhat of the same story. I was diagnosed in 2009. I was immediately put on Urso. My liver function levels have never been below 3x above normal. Fast forward to this February. I started getting restless leg syndrome out of nowhere. I did not believe such a disease ever existed until then. A day later, I was climbing stairs (something I do all the time as my workplace is on the side of a mountain and there are 175 steps to the top of campus) and had to stop three times and kept blacking out. I had just gotten back from a flight so assumed I had a blood clot. Called my former doctor. They did tests, came back severely anemic. This started a whole round of new tests, colonoscopy, endoscopy, swallowed a camera to take pics of my small intestine, liver biopsy, and a whole new team of doctors...BECAUSE it was found that I am now stage 4 PBC, stage 3 cirrhosis, gastric varices, esophageal varices, an enlarged liver, an enlarged spleen, super-low platelets, and will likely become anemic again because of oozing out of varices. I'm telling you all of this because I want you to be informed. I never knew you could be a non-responder to Urso. My former doctor was not paying attention and had no knowledge of my disease, although she acted like she did. The practice's gastroenterologist was a battleax and yelled at me for even researching my disease so I never went back to her, thinking my GP had it handled. I had no idea how sick I truly was until these past three months. I am now facing a reality I thought I would never get to. They put me on Ocaliva and it seems to be helping, but TOO LATE. The damage is already done. All I can hope is that my new therapy will help stave off a transplant for a while.

Please make sure you go to a reputable gastroenterologist or better yet a hepatologist. Make sure they watch you closely. Because I lived in rural areas (one being Alaska), there were no specialist available to me. I have since moved and my new team of doctors is pretty good so far. I am scheduled to see a transplant team, including a team of hepatologists, next month but the hospital is 4 hours away. I wish you the best and hope for a good outcome.

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I have been there also when i was diagnosed last october i became depressed but then i met other women with pbc through this forum who have lived with this disease for over 20 years and then i started to feel positive

I take urso go for blood tests every few months and i dont dwell on it

You do need to see a specialist have a fibroscan also and start on the meds

Good luck

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Hi! I'm pretty new here as well. I did have a week of feeling panic and worry (Mother of an adult daughter with Autism/nonverbal) but once I had liver biopsy settled in to the reality of it all. I'm fortunate in getting diagnosis quickly as that is the stressful part. I have PBC Autoimmune Hepatitis Overlap Syndrome. I am able to work full time, care for my daughter. Changes had to be made (medicines, diet, labs every 2 weeks, doctor visits) but it's become the new normal. If you are diagnosed with PBC you will do much better than you think. Try not to dwell. If a negative thought pops up- try to push it away. You may get better news than you are imagining. Hang in there and let us know how your journey progresses.

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Thank you all for taking the time to reply - I am feeling much more positive now. I do need to get diagnosed soon though so I know what I'm dealing with and get out of this limbo stage! I am in the UK, hence the long wait to be seen on the NHS. However, I do have health insurance and am considering seeing a consultant privately, but I found out recently that any procedures that requires my platelets to be monitored closely, my haematologist can't help out. So I need to work out what that means for private healthcare as I would imagine a liver biopsy (if I have one) requires close monitoring due to the risk of bleeding.

The more I've thought about this, the more symptoms I realise I have that have gone unexplained. My muscles ache, some days worse than others. The tense muscles in my neck/shoulders are almost a daily thing and I'm no stranger to tension headaches. My upper arm strength isn't brilliant and when I reach up to do some chores (i.e. clean the shower head, peg a king size duvet cover on the washing line), my arms struggle to stay up for long. I cleaned the house on Friday and on Saturday I woke up feeling I had spent the day in the gym! - Is this a symptom of PBC? My GP suspected Fibromyalgia Syndrome back 12 years ago when I started complaining of aching muscles and I've gone around thinking I've had that ever since, but have never quite shook off the feeling that diagnosis isn't quite right. The more I read about PBC, especially people's experiences on here, the more I feel I'm reading about myself and finally feel I'm not alone in how I feel and I'm not lazy for feeling I can't be bothered to run around with my kids for long (something I used to beat myself up for and gave myself a lecture for not pulling myself together!)

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