I’ve had elevated liver enzymes for some time together with some numb pain on my right side. When hungry especially. Since I’ve never had a family doctor, doctors just seem to raise their eyebrows at my results but then move right along to whatever reason I was there for (I’ve never gone for my liver specifically).
My latest test showed ALP 2.3 (0.70-1.9), ALAT 1.08 (0.15-0.75). I also have a history of raised GT and ASAT but they weren’t tested at the time. As you can see the elevations aren’t enormous. But as I google desperately to try to help myself as doctors seem too distracted I stumbled on PBC. The fatigue and mouth dryness together with my only slightly elevated enzymes seem too much of a coincidence. I suffer so much from mouth dryness that I’ve had oral fungus for a few years, chronically. I am going to be assessed for Sjögren’s syndrome next week.
I also have other symptoms that matches so well but I’ve read that being asymptomatic is pretty common. I will take new blood tests on Thursday and the doctor will call me again on Friday, he is not suspecting anything at the moment, we just met and he is trying to get a foundation to work off of to make me better if possible. I feel like it all also mimics two other autoimmune diseases, thyroid and celiac and I stumbled in a site saying that is very common with PBC.
PBC scares me a little. And I also don’t want to be dramatic. Should I mentally prepare for a possibility? Or are my enzymes simply “too low” for any liver disease/damage?
I know I’m not asking a doctor. But sometimes I feel asking the people who actually are going through it gives so much more than a doctor. Experience beats knowledge each time. Thank you in advance.
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MeN18
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I would say don’t panic until you have results. Elevated LFT’s can point to a number of conditions, not necessarily pbc. But if it is pbc, no need to worry either. The numbers are only slightly elevated, so chances are you caught it early in its progression. Once diagnosed, you can take urso which slows pbc progression.
My hepatologist tells me that pbc if caught early enough & patient is responsive to urso that the life expectancy is same as the normal population.
It sounds like you have other stuff going on too. Focus on a healthy diet & regular exercise. These will help your body offset the other stuff.
I have also been advised that recent studies show that if you respond to Urso that life expectancy is likely to be normal. How lovely to read the same report here. 😁
Our doctors read the same studies. My hep is extremely nice, always gives me the latest pbc developments & cheers me up.
If your having blood testing for Sjögren s it’s possible they are doing some immune testing. However if your worried about PBC I would ask for the AMA M2 antibody test that is spacific for PBC, if they’ve not done it already.
hi i would ask for blood tests for antibodies.. this is probably more helpful than lfts... could be loads of things.
lots of autoimmune conditions have similarly symptoms so at this point it is almost impossible to tell...
i was quite a long time to get a diagnosis.. but knew that something wasn't right.
not getting an answer quickly probably didn't change anything with the course of my disease.. but it would have been good to know as some decisions in my life may have been different armed with the information.
My health care is tax funded so I don’t have much control of it (I live in one of the “free” health care countries). They will not do antibody testing just because I ask for it, my initial blood test have to alarm them enough and so far it hasn’t but I’m hoping this doctor will at least look more into it because they’ve been elevated for many years now and no one has cared to even just double check that my liver is doing alright.
I suffer the most from fatigue with a big F, hairloss, swelling of my limbs and the dryness of my mouth especially. I do get pain where my liver is but it’s mostly when I’m hungry so I’m thinking it could be something else completely, I’ve never been able to eat food with any fat in it so it’s probably my gallbladder throwing a tantrum when it’s hungry.
Talk to the advisors at the 'PBC Foundation' who host this site on the umbrella group: 'Health Unlocked'.
You can phone or email once you access the site - link at top of page - but just a browse around their website will help, especially if you have to wait to speak to anyone. It is an amazing UK Based Group, set up by a PBC sufferer. Thanks to all her work and the Group's action, PBC is not the obscure overlooked condition it once was - although it is still rare. I am in the UK, and am also health-funded by the state, and I have never seen anyone act so quickly as when my GP first suspected PBC. This is true in both in my current practice (she just hadn't read my notes!), but also in my previous one - decades ago! - where the antibodies were first noticed.
However PBC is a rare condition, and many GPs have never encountered it. 3 of the 4 GPs in my current practice have never had a PBC patient - as a result, they do not always know the protocol to follow. However, checking the antibodies is the first requirement, and I'm astonished that your Dr does not know if you test +ve for AMA-M2 or not (= the most common first 'marker' test for PBC).
I have AMA-M2, have done for years, but as yet I do not have PBC, as my liver/blood tests are always perfect, I have no symptoms, and my health is good. NB Blood donor statistics show that about 10% of the population have AMAs, and only about 1.5 - 2.0 % of those ever go on to develop PBC.
However, as your lfts are slightly raised, it is surprising if AMAs have not been tested for, as several tests are required for a diagnosis of PBC, the main two being the presence of AMAs, and abnormally raised lfts over a period of time, that are compatible with PBC.
These two tests should all have been done, as well as extensive testing to rule out all other liver and autoimmune conditions.
So, please do talk to the people at the 'PBC Foundation' as they will help you on how to best approach your Dr, to make sure that the correct steps and tests have been followed. Testing you now and obtaining correct results is far more a sound financial use of Health funds than if you are ignored and your health becomes worse - although if AMAs are not present, and your bloods are raised for other reasons, then there may be no need to worry. But please do talk to the PBC Foundation'.
Thank you. I feel silly contacting them without a diagnosis or a concern yet from my doctor. I guess my worry a bit is that something isn’t 100% with my liver but it’s being ignored because my tests aren’t bad enough or I don’t whine enough during my visits. My real fear I guess isn’t to get a diagnosis like this.. is to learn that I might have had something for a really long time that is causing damage to the only body I have. Just because I tried to be a hero and not complain. Or I didn’t stay put in one place and had the same doctor for years who could discover a pattern.
Don't worry, the 'PBC Foundation' are lovely and helpful, and are used to being contacted about diagnosis, because many, many Drs are still not 'up-to-date' about the 'official/formal' protocols for diagnoses, that they are supposed to follow.
Yes, do try not to worry or obsess too much. But, on the other hand, I went through a very bad experience of misdiagnosis, because the medics in question did not know enough about the diagnosis of PBC. It was only once I had talked to the 'PBC F' and then (informally) to one of the senior consultants who advises them, that I had the courage and facts to challenge my wrong diagnosis [in my case they were saying I had PBC when I didn't]. So it can be worth getting other opinions and checking the facts first.
Sometimes I wish the internet did not exist. There is far too much information on it for those of us searching for an answer to our ailments. I'm in my 21st year post diagnosis and have dealt with a few things over the years. First, let me say, yes, it is scary as hell to think we have an "incurable disease". The not knowing, the waiting, the lack of medical professionals concern....this all fans the fire of panic we start with. Then there are the many symptoms we think are related. I remember thinking that every itch, pain, anything, HAD to be related to PBC. I have learned to relax and laugh at myself...but that took time. You mentioned chronic mouth fungus, Has anyone spoken to you about CANDIDA???? Mouth fungus, or thrush, is a result of candida(yeast/fungus) overload. The dry mouth could be from medications, sleep environment, mouth breathing...you get the picture. Anyway, your numbers are only slightly elevated, and as others have told you, could be caused my many factors. Fatigue is also a symptom of Candida, adrenal fatigue, pre,peri, and post menopause. So...lots to factor in. I hope you can put your worries aside until you need to be concerned. In the meantime, if you like to do research online, check out what you can do for your mouth fungus, The meds given to you by your doctors might be what is overloading your liver and raising LFT's. Be well and let us know what happens with your next test.
Thank you all. Also for the efforts to keep me put. I am not someone who usually google my symptoms. I just started as I feel like I’ve been let down by the doctors I’ve been seeing.
I know about Candida. I’ve been treated for Candida 2 times. The treatments never worked to completely get rid of it. First treatment was for 2 weeks and it was a mouthwash. Second was 1 month with medicine I swallowed. I wasn’t tested for Candida though (if there is a test) and only one of the doctors actually looked in my mouth. Most of my time with the Candida and elevated enzymes I’ve been unmedicated. I don’t take antihistamines unless I get a bad mosquito bite but I rarely do. I’ve switched countries within the last 2 years, continents actually to be precise so my habits have changed. But my symptoms haven’t. They’ve persisted.
I think a lot of different tests on me should have been done. But none were. Maybe because I don’t complain? I haven’t thought much of my elevated enzymes until now recently when I feel like my daily life has started to suffer. First time I heard of elevated enzymes was after an accident I had. Trauma to my abdomen. Since then I’ve gotten these results and my body started acting up. I started putting on weight, have trouble with my stomach, I got tired and couldn’t focus in school. I developed depression. I was a teenager then. When I was around 23 I suddenly got mouth thrush and my mouth started getting very dry. I was thirsty all the time and my urine is almost always dark despite my efforts. I’m 31 now. Still have the thrush, it never went away. Still odd lab results (elevated ammonia, slightly low ACTH, elevated ALT/ALP when I went back to the doctor 2015)
All they did was give me iron straight into my arm for a few months because I didn’t have much left.
I’ve just thought life is hard. My kids are still young. No one feels amazing all the time. People also tell me of course I’m tired when I work and have kids. Then in the beginning of this year my sister told me very firmly that this isn’t normal and I need to solve this. I guess that’s when I opened my eyes a bit?
I don’t even know you guys and still you mean so much already. Just finished my doctors appointment. Tomorrow I will take a blood test for Sjögren’s syndrome and a new liver function test (I JUST took one but not with my regular doctor) and he asked if anyone had done an ultrasound of my liver, I said no never, and that concerned him. He said due to how the system is he can’t order the AMA-M2 on a wild guess hunch (as that’s what it will look like when you have to defend it) but a new liver function test that shows elevated enzymes motives an ultrasound and further testing from there. Also I took it as a positive Sjögren’s (if I have those antibodies) also could motivate a look for other autoimmune diseases.
I have mixed emotions. I’m relieved to be taken seriously. Yet terrified he’s going to say nothing is wrong. And then so confused by that fear, who is terrified of being healthy? And also I don’t want to be “sick”.
I got partial blood tests back today and according to my doctor they indicate an auto immune disease. Seems like finally we are on the right track. Now to see which one
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but I’m hoping this doctor will at least look more into it because they’ve been elevated for many years now and no one has cared to even just double check that my liver is doing alright. 
Biopsy results back... 
Liver Biopsy Negative can it still be PBC?
Concerned with possibility of PBC
Uncertain
