Fibro scan newbie

[Sam1917]

Hi, recovered alcoholic 8 months sober. Since out of rehab been unwell. At first everyone said just body recovering but severe fatigue, seems to be getting worst, but think maybe it's all in my head as had so many tests. Also lost alot of weight, over 10kg and was not over weight before, bad IBS never had that, sweating and cold. Had bowel checks, gastro, bloods , CT scan to check for cancer and all seem fine. So just felt I must be going crazy. Then centre near me offered a fibro, unrelated to my docs/hospital so went Fri and said 'I know all fine as had all past tests recently' them result was 15.5. I dont know what that means but poss stiffness. Told will have ultrasound and bloods.. How will these bloods be different to last just had and CT scan not pick up anything. What does around 15 mean, if true going fwd. Sorry for ramble and I know no one can diagnose but any feedback greatly appreciated. Thank you

[Grassroots112]

HI and congrats on going sober, that’s amazing, you need to see a gastronomic/hep doctor regarding your scan results, however, as a reading of 15 + is suggestive of advanced liver disease.

I’m a recovering alcoholic myself who this time last year was in hospital with ascites and jaundice and what they termed as alcoholic hepatitis, my fibro scan read 22.2kpa a month or so later which my doctors described as advanced fibrosis/cirrhosis.

But they didn’t want to diagnose me as having cirrhosis as they believed with further abstinence from booze and a healthier diet, that my at the time heavily damaged and inflamed liver may heal enough to achieve a lower reading with a follow up scan and it did to a 9. Meaning they now state I have moderate fibrosis of the liver which is scarring, but not cirrhosis.

I’m no doctor of course, and certainly don’t want to alarm you, but a fibro scan tests the stiffness of your liver and how fatty it is and the kpa reading they use to scale what level of liver disease a person as based on that reading. Mine is moderate fibrosis, but was advanced fibrosis and at 22.2kpa had it not went down would have meant cirrhosis.

The good thing is you’ve remained sober and taken measures to allow your liver to heal and get better and it took 10 + months for my liver stiffness to come right down after I stopped drinking, and I’m hoping it comes down even more the longer I stay sober. Try and schedule an appointment with your GP and get referred to a GI/Hep doctor to find out more about what these results mean and for further tests. Good luck and again, congrats on going sober 👍

[D6C2L30E-48 in reply to Grassroots112]

My fibroscan as gone down from 65 to 10 but ultrasound still says cirrhosis any ideas sorry to jump in

[Grassroots112 in reply to D6C2L30E-48]

That’s amazing to get it down from such a high score, I believe it only goes to 70 max, I could be wrong though. I’m no doctor so can’t really comment about your own readings. I do know with alcoholic related liver disease, they use different parameters in diagnosing and interpreting results.

For example a fibro scan reading of say 15kpa with ARLD isn’t considered as cirrhosis, where as other forms of liver disease with such a high reading would be. I also know a high reading isn’t just factored in, that things like platelets, INR and other factors are all considered too.

Even at 22.2kpa which is considered cirrhosis with ARLD, can be interpreted differently if a person’s platelets and INR are considered normal. What are yours if you don’t mind me asking? One of the reasons why they wanted to hang fire and give my liver more time to see if it would heal or become less stiff to rule out cirrhosis was because my platelets and INR wasn’t suggestive of cirrhosis, which in terms of platelets can decrease massively even in those with compensated cirrhosis, where as INR is often elevated from a standardised 1.0 (U.K.). My platelets for example are 224 I believe and my INR 1.0 and have always been that way even when I had jaundice and ascites.

Again with liver disease however, who really knows, the experts certainly don’t hence why my doctor is still cautious and told me unless they removed my liver and put it under a microscope they just can’t really say for 100% sure. That’s why they go off so many other things and look at a totality of results and that changes with the cause of the liver disease.

I’ve definitely got a scarred liver which is fibrosis, but I’m told or understand cirrhosis is kind of like scarring over scarring, where the first layer so to speak of scarring g has healed over like a scar on your skin will or can. But when it scars over again, it can’t heal itself any more, the room for healing has gone, only more scar tissue will grow and of course spread especially more and more covering larger areas or all of the liver the more damage done to it. Hence why if you have cirrhosis you must never drink alcohol again or have to cut out damaging foods from your diet and things like sugar and salt.

And why a liver so scarred may need extra vitamins, nutrients and minerals to keep working or to improve it, for example selenium helps with bile, a damaged liver may need more of it. A damaged liver needs more protein too because it struggles to metabolise it.

[Sam1917 in reply to Grassroots112]

Thank you so so much for taking the time to send such a supportive and helpful reply. I will definitely follow up as you say. I am so pleased for you that you have managed to turn things around. Thanks again

[Grassroots112 in reply to Sam1917]

You’re welcome, I’ve got my fingers crossed for you, I’m sure your results will continue to improve and you’re doing the best thing possible for your liver and health by remaining sober.

[Sam1917]

Thanks so much! These chats have been such a life line when no where else to ask and not want to worry others. I shall hopefully have some updates soon and if it is as suspected will look into learning how to alter my diet for the best. Thanks

[Grassroots112 in reply to Sam1917]

Yes unfortunately our doctors don’t seem to be able to communicate what this and that exactly means so we can digest information in a way that we can learn from and actually use, I arm myself with lots of questions whenever I see my doctor, like a check list and I’ve learned that the more you push the more answers you get. I understand their time is limited and to them they know and understand all the technical details off by hand, but we don’t and this is my time and it’s precious so if I have anything wrong with me I want to know every single facet of it so I can treat it, help myself and not be a future burden on them if I can help it. I’m convinced for example my home made own herbal tea remedies have helped my liver just as much as me not drinking or me sourcing what vitamins, minerals and nutrients my body lacked and needed the most and adding them to my diet, all through natural food sources and not some manufactured tablet made in a chemical pharma factory. This place is a great source of information because it comes from peoples real life experiences and not some doctor jargon or the dreaded Internet/google rabbit hole.