My mum died suddenly with liver cirrhosis, she never drank or over ate. She had no idea she had it until taken into hospital with suspected gall stone pain.Anyway I'm concerned so I had bloods, all ok apart from a alpha 1 antitrypsin deficiency. GP sent me for a ultrasound which showed Garry liver but declined to refer me on or do any additional tests as bloods were ok
I've privately had a fibroscan due to my concerns and advised to contact my GP as my fibrosis score is 8 and CAP is 360
I'm researching the scores and it all looks pretty scary. What does this mean and what do I do if my GP isn't interested?
I live in Shropshire and our hospitals are ranked the lowest ,they are awful!
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Neenie1
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First, I am so sorry for the loss of your mom. I am in the U.S. so not sure of the referral criteria elsewhere. However your Fibroscan scores are in the range where you can likely recover but need to make immediate lifestyle changes. I would hope you'd see a specialist to determine the cause. The British Liver Trust website has a lot of information on what you can do starting now. You can also call their nurse hotline.
In short, lose any extra weight but don't crash diet. Get daily exercise if you are able...walking is great. Eat a Mediterranean diet and especially avoid alcohol completely regardless of cause as it will harm an already fatty, scarred liver. If alcohol is an issue, get whatever support you need for that. Eat fish, a little white meat chicken, lots of veggies and fruit, beans, oats, unrefined grains, olive oil. Avoid added sugar and refined grains like white bread, white rice. Fiber is good for you.
These are actions that will help you right away while waiting for further tests and instructions. You have caught this early enough to stop and hopefully reverse it so take heart in that.
Again, I am so sorry for your loss. This is a lot for you to deal with at once. Be extra kind to yourself. Sending hugs.
Thank you so much for your kind, supportive and informative reply. I have been trying to lose weight but it's so hard and I walk my dog for at least an hour a day. I've recently started mounjaro and lost around a stone so I dread to think what my scores would have been prior to that. I have lost it in a month is that too fast? I was hoping I was doing the right thing
I lost a lot the first month of changing my diet too. Then about 4 pounds a month. It varies by how much you have to lose and I'm not sure how the mounjaro fits in. Great on the exercise. It sounds like you are on the right track already. I had a similar situation where my fatty liver was found during an ultrasound done for something else. It was 3 months before I could get a Fibroscan and I had lost 18 pounds by then so I will never know how much higher my CAP score would have been. I get a second Fibroscan 10 months after the first so I will see if the weight loss, dietary changes and exercise helped. I'm near normal BMI now. My kPa was 7.5 so in same range as yours. My specialist said it should be reversible. I have the added issue of Hemochromatosis but it seems to be fairly dormant now. By the way, my specialist would have recommended the weight loss medication for fatty liver but I don't have enough extra weight to have insurance coverage for it and it is very expensive in the U.S. So hopefully that will help you get where you need to be.
It can be really challenging to make lifestyle changes. Here are the links to information on the British Liver Trust website about diet and exercise, which you may find useful
Sorry to hear about your mum. I discovered that I had NAFLD after a small bowel MRI investigating a bowel issue. The MRI showed I had too much fat in the liver. I subsequently had an MRI of the gallbladder and pancreas which showed I have too much fat in the pancreas.
My liver function tests have always been normal and have given no indication of what's going on inside my liver and pancreas; I have a bile acid disorder called bile acid malabsorption which is closely linked with NAFLD.
Given your KPA score of 8, you could ask your GP for a FIB-4 blood test; this won't give any information about the fat in your liver but will give better insight into your risk of developing cirrhosis.
Doing exercise, dietary changes and reducing alcohol which is very calorific makes sense. I've been trying to tackle NAFLD via fat burn static bicycle exercise. I wish it was easier to access fibroscans to see whether NAFLD was decreasing.
What a shock that must have been about your Mum. I am so sorry abd understand why it prompted you to have all those tests. Are you aware that aat deficiency is a genetic condition that can lead to liver damage such as cirrhosis and fatty liver? This important finding should have been flagged up to your GP as needing further investigation. Please make an appointment to discuss this condition with them.
You should look more into the Alpha One Antitrypsin Deficiency as this can cause cirrhosis of the liver even with good eating and not drinking alcohol. It is a genetic condition that causes your liver to produce an abnormal protein that gets stuck in the liver, which causes scarring that can cause cirrhosis.
Hi Neenie, I’m so sorry for your loss. I also lost my Mum to liver disease and have Alpha 1 antitrypsin deficiency, as well as autoimmune liver diseases. I want to reassure you that even with our backgrounds, our livers can function well and you may have no symptoms.
You’ve done the right thing asking for a referral to a specialist. If your GP won’t refer you, keep asking. If your surgery is like mine, you see a different GP each time, so hopefully one of them will agree. You may feel reassured by being under the care of a specialist team who can monitor you. Tell them about your Mum, if there’s a family history they might take notice. Also, when I was diagnosed with A1AtD my husband and I were offered genetic counselling so I’d ask about that too.
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