Hello, I was diagnosed with NAFLD last January following an ultrasound scan after routine blood tests showed high LFTs. Since then, my alkaline phosphatase has doubled, my AST has doubled and my ALT has tripled. I have also started Atorvastatin a few weeks ago and I’m due to have bloods done at the beginning of March as I was very concerned about the effect these would have on my liver so the GP agreed to check my bloods again.
My question is - how regularly do others with NAFLD get monitored? And how? When I express concern or ask I just get fobbed off and they do more bloods which keep rising, and then they do nothing. I’ve been told I’m not eligible for a fibroscan yet. As you can imagine it’s quite scary watching my LFTs rise and not getting any help. I’ve lost over 3 stone too and I’ve never had an unhealthy diet, drunk alcohol or smoked.
hi, I was diagnosed aged 38 (I’m 56 now) similar that I wasn’t overweight, didn’t drink etc growing up. anyway, bloods every 6 months for a couple of years and put on atorvastatin. Then had ultrasound which is repeated every 3 years. I had a fibroscan in my early 40s. A couple of years ago my ALT rose a lot again so had a fib-4 and elf blood test which indicated fibrosis so had another fibroscan which showed fibrosis so I’m back under the liver team and supposed to have annually but they didn’t do one last year but I’m due another soon. Well done on the weight loss that’s amazing. Keeping fit and well will help. I unfortunately gained weight in this time and struggle. I have other issues (joints, bowels) and when menopause kicked in it tipped me other the limit for diabetes too.
Thank you so much for replying and sharing your story. So sorry to hear that you’ve been through so much. Good luck with your next scan - I hope you don’t have to wait too long.
Sorry to hear that you're going through this. My own experience is very similar. Diagnosed with NAFLD 4 years ago after a Fibroscan. Had various other tests (all clear) and then discharged, but told should have a repeat Fibroscan in 2/3 years. 3 years came and went, hearing nothing from Hepatology, and no monitoring during that time. Eventually went to my GP and pointed this out and asked to be referred for the Fibroscan. He did blood tests and have now had 6 lots of blood tests done in 4 months, showing a rapid rise in Alkaline phosphatase and ALT. Have a Fibroscan in 3 weeks, but no sign of a Hepatology appointment (my GP wrote to them 3 months ago to ask a question regarding a possible issue with blood supply in the liver, but hasn't had a reply).
Could you possibly see another GP? The first one I saw tried fobbing me off, just kept asking for repeat bloods, without doing anything about them rising. I also asked her to do the Fibroscan referral and, in the letter, she just said I'd requested it - no mention of worsening LFTs. So, I saw a different GP, who I know is very thorough - he said he'd take charge of it and he wrote again to Hepatology, which I think prompted the fairly rapid Fibroscan.
The British Liver Trust used to do roadshows, where they did Fibroscans. If they still do, and there's an event near you, maybe you could go to that? I would definitely pursue with the GP, though - especially as you're losing weight. Have they done other tests, besides the LFTs? When my problems initially started, the GP did a whole host of other tests, checking for autoimmune diseases, cancer, etc.
Hoping you get this sorted soon and wishing you well!
Thank you so much for your reply. It’s so reassuring to know that I am not alone in this! So sorry to hear you’ve had similar experiences with being fobbed off and not taken seriously… Good luck with your fibroscan too.
I have a phone call appointment with a different GP (the third different one I’ve discussed my LFTs with) so will see if he can come up with a proper plan forward that ideally stops me resembling a pin cushion when nothing else is actually being done and my results going higher and higher!
I have had loads done including the usual thyroid, diabetes, kidney, celiac’s etc, and I’ve also had some done for hepatitis and liver autoimmune conditions.
Hope the phone call goes well and you can get some action. The British Liver Trust, nurse-led helpline is really good, so you could also call them for advice. If you could speak to them before the GP, it might give you some "ammunition", so to speak.
There's another blood test called FIB 4 that a GP can do which might give a bit more insight but the CAP score of a Fibroscan is the most accurate measurement. What was your CAP score in January?
NAFLD is often linked with bile acid disorders. Do you have any digestive symptoms?
I also have severe BAM as well as NAFLD. It appears that BAM leads to elevated triglyceride levels and NAFLD. Do you take bile acid sequestrants as well as statins or can you manage your BAM via a low fat diet? Which type of BAM do you have?
BAM is also associated with joint problems. Vitamin D deficiency is very common in patients with BAM. It sometimes leads to elevated bile acid levels (probably in patients with type 1 BAM who've had surgery to the ileum).
I have type 2 because I have my gallbladder and had no surgery. I have arthritis and joint hypermobility. Yes I was deficient in lots of vitamin levels and take loads. I take colesevelam 4 a day and a statin. Was on BP meds and statin aged just 40. And despite having issues they didn’t diagnose my bam until 48.
My whole lipid profile inc triglycerides, gamma gt, cholesterol, ALT all high.
Are you on the bad (Facebook) forum where there are lots of people with BAM:bad-uk.org/
There are quite a few people who are trying the weight loss jabs (e.g. monjaro). As the drugs are expensive, getting them via a specialist BAM consultant would make sense.
Colesevelam and the other bile acid sequestrants were first developed as cholesterol lowering drugs and then repurposed for the treatment of BAM. Have you ever spoken to anyone about the interaction between bile acid sequestrants and statins?
I'm in the US. Normal blood tests but ultrasound done for different reason showed fatty liver last spring. Had fibroscan which showed early F2 steatosis and scarring (7.5 kpa). Further blood tests showed genetic Hemochromatosis which may or may not be active. Fibroscan is being repeated at 1 year. I have lost most extra weight. Not related to alcohol but the early scarring could be related to Hemochromatosis.
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