Hello, I was diagnosed with NAFLD in January after high liver enzymes and an ultrasound scan.
My question is, at what point did anyone else with this see a specialist? My GP has been doing all the bloods and doesn’t seem concerned, however I’ve lost 2 and a half stone and yet my blood tests still are rising, the LFTs are 2/3/4 times the highest normal range.
I exercise with daily walks and swimming when I can - I’ve had chronic fatigue for the last 2 years so this isn’t easy! My diet is healthy and balanced with lots of fruit and veg so my GP doesn’t think it’s all diet related.
So my question is, when should I be asking to be referred for additional scans/tests/specialist advice? My GP says I’m not at the threshold for a fibroscan.
As you have a continued pattern of elevation in blood tests despite your healthy lifestyle changes I'd be pushing for a referral to liver specialist. Have any tests been carried out to rule out other non alcohol related issues - such as auto immune conditions? Especially in light of symptoms and pattern of elevated bloods.
There are protocols (NICE guidelines) in place for NAFLD which you can find at :- nice.org.uk/guidance/ng49
The continued pattern of elevated enzymes coupled with fatigue would suggest something else is at play - you say your doctor has said he doesn't think it's all diet related. The longer elevated bloods persist the more likely that damage will occur. I'd ask for referral for further tests - a fibroscan is of no use when you have elevated bloods (any inflammation in the liver can give a false result on fibroscan). Further tests for auto immune issues and such like may be more valuble.
Thank you. Yes they’ve done hepatitis screenings and antibodies, all fine, although my A1 anti-trypsin was just very slightly above range - unsure what this means and my GP said it was fine… I’ve also had coeliac and thyroid screenings, kidney function tests and HBA1c and glucose tests, all normal. I do have B12 deficiency which was picked up when they did the routine bloods that picked up my liver condition, so this could play a role in my fatigue although I am on injections for this, and I had Covid 2 years ago which could also be playing a role so it’s hard to know.
Thank you for the guidelines too that’s very helpful! I’ll keep pushing with my GP too I think as the results keep going up, my last lot showed my bilirubin was high too which is new as my previous tests have shown that as normal, my cholesterol is also high (I don’t know how long though as this is the first time it’s been checked)
I edited my post after you'd read it and liked it - might be worth a re-read as I cover fibroscan and it's limitations when you have ongoing inflammation etc.
Now! Insist on being referred. I had to push and push. I always keep copies of my blood test results and my surgery knew there was a problem with my liver but the response from one GP was that it's quite common. After having a camera down it was established, among other things, that my liver was enlarged and that I had stage 4 liver disease NAFLD in other words cirrhosis. I now have 6 monthly blood tests and scans as there is an increase chance of developing liver cancer. You can imagine my thoughts on that GP. But this is the problem with liver disease. It is not given enough gravitas in my opinion and easily dismissed. Sorry for my rant but this is down to lack of information as to easting habits but also there is a genetic element as its now been established that 5 of my cousins have it and my sons readings are becoming a concern as his latest blood test has shown a chance that he will get it too. So push for it and good luck.
Thank you. I’m so sorry to hear of the battle you and your family have had to go through to get the help you need. This is my concern too, considering how high my lfts are and they’re increasing each time, yet my GP doesn’t seem to be concerned. I have a phone appointment with one of the Drs in a few weeks so I’ll definitely push this.
My GP was great did many blood tests to see where the high ALT score was coming from … all turned out OK
I was also under gastroenterology and they gave me an ELF test that came back as 9.8 and then another at 10.00 - they said referal to liver specialist was when ELF score gets to 10.2
Meanwhile I was diagnosed with fibro, fatigue, arthritis and kidney disease stage 3 … bloods every six month show my folate and B12 are very low normal. Like you my cholesterol was high with high LDL. I tried statins couldn’t tolerate them, also any meds for fibro just put my liver score higher so I have to watch medication.
6 months ago was referred to endocrinology as cholesterol was still high, it runs in my family and now I’ve been put on Praluent injections to bring it down. This is the first medication that I feel has improved my health, fatigue is better, movement is better, inflammation is down and my liver is doing Ok in blood tests. Some long term studies show this medication might help fatty liver over time. I know I don’t feel as poisoned in my system which is something I have had to deal with for quite some time. I don’t drink alcohol and I eat clean and I exercise daily …. Non of that helped me.
I think the point I’m making to you is it’s worth following up your high cholesterol score and if statins or Ezetimibe don’t help then keep pushing.
Thank you so much for replying. It’s scary seeing my bloods increase and increase yet I keep being told not to worry! I have a phone appointment with a GP in a few weeks so I’ll definitely make sure I’m pushing for a referral or at least more of a plan of action. I don’t drink alcohol, never have, my diets balanced and healthy and I’ve lost 2 and a half stone through daily exercise this year so I don’t really know what else I can change to help!
As someone who is now in ‘ end stage care’ of NAFLD and Cirrhosis after first being diagnosed 16 years ago I would say that everyone with NAFLD and Cirrhosis is very proactive in their treatment/care. I was advised by a Professor of Hepatology who was called in to complete an emergency operation that I had this disease but it had not been noted in my bloods, which showed no changes. I have Type 2 diabetes for over 30 years and was doing just fine but my body was putting excess fat into my liver and not my butt! So I abided by the advice given, and last year was hit by sudden illness and now unfortunately I’m now looking at the end.
So my advice is take any advice and if you’re not happy demand to see a Hepatologist especially if you have auto immune or any other co morbidities.
Thank you so much for your reply and sharing your story. I’m so sorry. It’s scary seeing my bloods increase and increase yet feeling like it’s not being taken seriously. I have a phone appointment with a GP in a few weeks and I will definitely be pushing for more help/referral.
You’re very welcome, I think that sometimes people are seen as ‘ worried well ‘ - but we need to make sure that we’re happy with the treatment/the information we are given and by whom!
We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers), including one for NALFD/MASLD/Fatty Liver Disease. If you are in the UK and would find it helpful to speak to others with shared experience, you can register to join a group here: britishlivertrust.org.uk/vi...
We also have a nurse-led helpline so, again, if you are in the UK and would find it useful to talk things over, the helpline is open Monday 9am to 3pm and Tuesday to Friday 9am to 4pm on 0800 652 7330 (excluding bank holidays)
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