Since joining this group, I’ve become aware of two major errors in my understanding that I, and I believe others, are making in any self-assessment of their health.
The first is that it is safe to assume that because you don’t have any or many of the (almost identical) lists of symptoms for both cirrhosis and/or cancer the liver, then you are probably OK. I say this because I have read that the liver can continue to work well even when large parts of it are damaged, and that if you have any or all of the symptoms on the list, then you’re probably too far gone.
The second error that as have previously made is that if your liver function blood tests come back as normal, then you are also probably OK. This, again, seems to have been a huge error in my thinking as I have now read that LFT’s can be so wildly misleading, and giving false impressions of a person’s actual health, that you might wonder why any doctor wastes any time at all in conducting tests that are basically useless in giving a clear indication of a person’s actual health.
For every piece of information that I thought was out there that I could ‘pin my hopes on’ to tell, me I was OK, it now seems there are umpteen points that disprove them and send my confidence in my apparent safety crashing to the ground.
I am clear that wild, abandoned drinking is detrimental to our health, but beyond that I’m not sure that I’m sure about anything any more.
Could anyone out there offer their comments on this one, please?
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Kellan38
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I can comment that I agree with your post...-I did ask my doctor about the liver function tests not really meaning anything (as those in support groups let me know when I said mine came back to normal range) The answer he gave me was helpful -I really suggest you ask yours-it truly is situational....Using reliable sites research liver function tests-pitfalls of liver function tests etc. Research everything and then bring list of questions and answers you found to your doctor-it will give you a little sense of power- but I feel you 💯
I know it is now nearly 8 years since my husbands' transplant but the same was true to say
when he first became ill.
We spent 6 months seeing an "endocrinologist "because other areas of his blood results were not pointing to liver issues", but were not within normal parameters either.
Eventually she booked an "abdomen CT". This showed up cirrhosis. We then spent the next four and a half years seeing a Gastroenterologist who just let my husband deteriorate until
I fought the system to see a Hepatologist. Went to kings for next 18 months and all tests were performed including AFP which tests for HCC (Liver Cancer). Even that came back clear.
On transplant his liver was found to contain "over ten" HCC Tumours, which had they been discovered via the AFP test, would have excluded him from transplant. He would have died.
So in our case tests not showing correctly can be in your favour as long as you keep pushing and don't give in.
His problem was a rarer one known as "Alpha 1 Antitrypsin Deficiency" this is inherited from a parents. Maybe that was why it didn't conform to the normal tests!!!!
That’s truly interesting! Didn’t anyone ask him if he had parents who suffered with any significant problems?
I go to both QEHB and my local Hospital Liver clinics alternately post TP - just over a year ago - and I have my local one telling me I have liver disease and QEHB telling me everything is fine. I haven’t had chance to talk to my local one yet as this is very recent! Just shows that there is only one person who can have a holistic view of your health and, despite the fact I was told by the Hospitals that should be my GP, we all know that just can’t be true! The only person is yourself....
Thanks for that interesting story.
Miles
GrahamBB, my understanding is that while LFT's are known not to indicate the liver's state, they serve your specialist as an indicator of change over time. That's why it is no use ever for us to post our LFT results on here because they have no meaning as stand-alone numbers, or in comparison with anyone else's.
What we can have is doctors who communicate well with us, answer our questions, and, if they give us directions/prescriptions they tell us WHY it is important to follow the guidance.
This we have some control over if we do our own research, listen to each other, and be our own advocate in consultation with our doctor. It is the doctor's job to involve you in his care of you but often patients just listen to what she/he says and do not prepare for their consultation. Over time, and with practice we can get better at being active partners in our health care. It isn't always easy but it gets easier. It's a good focus for our energies if we are anxious.
I had exactly the thoughts you express when I learned from other patients that the drug I'm told I shall take for life, while it improves LFT's, it doesn't stop progression of disease. I continue to take it because I trust and believe the existing but incomplete indication that it is some use.
Sometimes, worry can be our worst enemy, and the most important problem to overcome.
Nobody new until we got them tested in the interests of the wider family.
Good Luck
A few other permutations - Bloods come back incorrect or inconclusive you would think they'd be chased up or red flagged subject to one's condition. However we excuse a busy Surgery, time & financial constraints. Is it complacency from some senior GP's. I find the trainees more switched on.
A few other points, can they be arsed. Not the 1st time I've rang a receptionist for results and been told they're fine. I have had to ask are you sure, check footnotes from GP. I mean do they even look at the screen. My partner keeps being told bloods are fine. Far from it.
I’ve noticed this for LFT and even cholesterol tests. The receptionist I spoke to on the phone just said “normal”, and when I asked for the actual numbers, she didn’t understand which number was which anyway. Best to see the figures written down.
I've tried to register with the Surgery online but been told I have to go there to pick up the reg details @ reception. I assume I can link the app already installed thanks 2 ur info.
I ask for printouts every time I have a test. Some people I know make their own graph so they can track changes when they occur. When you are familiar with your own results you can justly be less concerned about your GP not noticing, and you will be able to point them out to him/her in a respectful way that gets his co-operation and explanation as to the cause.
What you say is right concerning the LFTs being in normal range whilst a large part of the liver is actually no longer performing. It certainly is difficult to understand when you are feeling lousy, but they then tell you "but you have good liver function". Basically as someone said above, they are looking for patterns. So when your LFTs are stable, then if you feel rubbish, they know they need to look at the wider picture. However, if they begin to steadily rise and stay at these levels, then they know, for me anyway, that they need to increase the meds to maintain stability.
If the LFT levels become more difficult to keep in range, then they know that for me the disease is progressing. So absolute numbers are not being used, but trends and patterns. As my disease (AIH) progresses, then my LFTs become stable at slightly higher numbers and these are my new "normal", but they wouldn't necessarily be normal for anyone else.
So in short, it is not useless to look at the LFTs, indeed, depending on which numbers increase, they can conclude if you are progressing with cirrhosis and what to expect next, as well as dismissing the presence of other problems. Trends are what they look at, not specific numbers (unless you are being newly diagnosed). Hope that helps in some way.
Hello, I was interested in how long you have been diagnosed with AIH? What do you find most difficult with your condition?
I also was diagnosed with AIH only in February this year, but had been feeling unwell for about 12 months before. On steroids and immune suppressants, but just not getting back to health? Hope you don’t mind my questions but have never chatted with anyone with same issues
I have been diagnosed over 10 years. It took a good 12 months for the meds to bring me some stability. The most difficult thing is the unexpected fatigue- I mean how you have no energy without warning. It makes planning difficult especially for hols.
Other difficulties are side effects, but these can be very different for each individual. I have type 2 which is the more aggressive version, so that has brought its own challenges.
If you want to ask me more specific questions feel free to PM me. Also there is a Facebook group just for AIH conditions. It is worth joining for the access to the files which fully detail meetings that have been held with the lead specialists in London and Birmingham.
The files explain the condition, research that is being done and how to deal with problems such as recurrent UTIs , pain relief and more. You can also of course ask other members about anything that is bothering you, for instance flu jab, exercise or whatever.
I am happy to answer any questions you may have in the meantime. When I can, I will post the Facebook link. All the very best to you.
Thank you for your reply... yes I need to wait at least a year for meds to get me to a level of functioning. As you said it’s fatigue that is most crippling.
That’s a very informative reply, Carpe Diem11, thank you very much. I’d never have worked out the real purpose of TFT’s for myself, and I’m grateful for your help....
All tests are there to be used in correlation with others and assessed by a liver specialist who will give his or her diagnosis based on the evidence and their experience. A fibroscan is probably the only true non opinionated way of non invasive diagnosis.
I have to say that from my own experience, this is not true. I have a very low score and it has been done twice, 3 years apart. Fibroscan would indicate fibrosis at the lower end for me, but I have cirrhosis. It certainly can't be used to diagnose as the numbers correlate differently depending on what has caused the damage.
So for fatty liver, there is one scale and for alcoholic hepatitis, the scale is different. For my condition, there is no actual scale!!! One of my hepatologists did say it ( the fibroscan) is most reliable for alcoholic hepatitis, but I have learned over the years that not all hepatologists have the same views, even regarding results.
I didn't have a fibroscan for 7 years after diagnosis, so it was not used to diagnose me at all.
Sorry to disagree with you, but I wanted to give my experience in case others find themselves in the same boat!!
LFTs and other tests are really all just part of a bigger picture. Its everything combined that is best to give a diagnosis and even then it can be difficult.
I was asked by one doctor if I would get another liver biopsy just to make sure all is well as my first one a few yrs back showed mild inflammation..i was going to just not bother as my LFTs were almost normal ..i decided i would just do it and it came back with cirrhosis!!
So yes although LFTs can help they don't always show the whole picture!
I was real curious at your response. Why would your Dr. want another test if things improved from your previous visit? If your LFTs were normal, What prompted you to want a retest? Is it common for a Dr. to want a biopsy over mild inflammation in the first place? Just wondering if you had some symptoms or other things making you suspect your liver prior? Sorry for all the questions. Knowledge is power😀
Well guessing ..as I contracted it from my husband after we got married..obviously he didn't know at the time!
He got vaccinated as a young man in Egypt and they used the same needles for multiple people!!
Anyway when my husband got sick we discovered that he had Hep C.
I then got tested and was told unfortunately I had contracted it from him!
At the time I was told most likely as I'm a woman that my Condition will be mild!
They done a biopsy that showed mild inflammation at the time and most of my LFTs were normal so I was monitored..as a few yrs had passed although my LFTs were normal I started to feel symptoms of the virus!
They decided to do another biopsy just to reassure me!
..it came back with severe stage 4 fibrosis incipient cirrhosis plus portal hypertension
I have went on to clear the virus 4 yers ago!
Since then my ALTs are normal but I have developed varacies and developed PHG
So yes liver function test don't tell the whole picture at times.
I agree with what everyone has said about LFTs not being totally conclusive when looked at in isolation but they do give an indication of how things are progressing with the disease.
I do get a bit irritated when I go for a review at the Liver clinic and they pick up my latest bloods and tell me how I am doing without asking how I am feeling !! It would be nice to be asked how my appetite is, whether I have any pain, am I sleeping etc.....
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