Cirrhosis and Confused

I was diagnosed with Liver Cirrhosis in March of this year (2024) when I was 29. It was diagnosed through a CT but had ‘deranged’ LFT blood tests since August 2023. I was also diagnosed with type 2 diabetes and an enlarged spleen. The thought of it all scared me and so far I’ve managed to lose 3 stone & have put my diabetes in remission. I recently have been feeling very unwell with little to no energy and very confused with daily headaches and some problems with remembering things. I went to my GP and he did my LFTs again (3 times!) somehow my bloods have suddenly gone from seriously abnormal to ‘normal’. I’ve also just found out that I have an appointment on Monday with a gastroenterology nurse and to get a Fibroscan. I don’t know why. Can anyone relate with the blood test results being suddenly normal? I’ve been told there is no cure and I’m feeling worse. Also why would you see a gastroenterology nurse? Advice for Fibroscan? I still can’t adjust to it (I have autism) and all of this is affecting my mental health. If someone can relate or answer those questions I’d appreciate it! Thanks for reading this!

[AyrshireK]

It's possible that your improved lifestyle and diet have caused the improvement in your bloods - it's not uncommon for bloods to be good even with compensated cirrhosis. The appointment for a fibroscan is obviously to check on your liver and give it a score for tissue density (potentially improved since your initial diagnosis).

Have you previously seen a gastro or hepatology specialist since your diagnosis or has it all so far been GP?

Any one with a cirrhosis diagnosis should be seen by gastro or hepatology with minimum monitoring being 6 monthly bloods and 6 monthly scans to look for changes in the liver.

If you see this gastro nurse make sure you make him/her aware of all the symptoms which are causing you concern - particularly the confusion etc. Are you currently taking any medications for your liver symptoms? Make sure you take a list of those with you to clinic as well as a note of any questions you want to ask.

Katie

[2024October]

Hi, don’t worry they gonna look at scarrings in your liver and yes my fibro was with nurse as well they same from liver team . Mine showed cirrhosis and ultrasound month earlier didn’t show it but enlarged liver . They do every 6 months

[MisterX]

Hi,

Cirrhosis is a measure of scarring - fibrosis - essentially the point at which the entire liver comprises scar tissue. Owing to the liver’s unique ability to regenerate tissue, fibrosis short of cirrhosis can reverse if the cause (the insult) is removed.

It used to be thought that cirrhosis was irreversible but we have discovered over recent years that early cirrhosis can reverse if the insult is removed.

Additionally as you know cirrhosis has two main stages, compensated and decompensated.

Much of what you have to do is the same regardless of the point you are at and it is impressive and to be applauded that you have done it. The normalisation of blood results is a really good sign and the fibroscan will be a good way to get a more accurate up-to-date idea of the level of fibrosis.

At this stage I’d say keep your chin up, hope for the best and continue the good work. Look forward and take it day by day. I’ve had compensated cirrhosis for more than a decade and it’s perfectly possible to live a normal or near normal life with it. If you are fortunate you’ve started the early steps of reducing it.

Hope that helps. Very best wishes.

[Readlots]

Hi, liver nurses and doctors are often part of a gastroenterology team. It’s not unusual for a gastro nurse to do a fibroscan. Hopefully they’re doing a fibroscan to see if it supports the blood results and shows no cirrhosis. Fibroscans are very quick and painless. The nurse holds a probe against your ribs and it feels like someone flicking you. It’s a bit like when they do the pressure test at the opticians. More of a surprise than pain. They often tell you there and then what the result is. You can ask them to explain what it means.

Re feeling unwell. I’m assuming they’ve checked for anaemia and your thyroid? These can both cause fatigue. The other obvious one is Covid. If you’ve had it recently it could be taking its toll. I’m sure the GP will get to the bottom of it. Keep going back until you get answers. But it would be fantastic to find that you’ve reversed the cirrhosis as well as the diabetes. Well done!

[Hdon]

have they identified a cause for your cirrhosis?

[Hidden]

Hi everyone - I thought I’d send an updated post as I struggle to get back to all of your replies individually. Thanks so much to those who replied to my post- my gastro consultant said it was the diabetes and obesity that caused the liver cirrhosis. I’m starting to feel really reassured because the diabetes has reversed. I’m just in shock as I do know that this doesn’t happen much and I’ll be very proud of myself (especially if the results on Monday show minimal to no scarring). I guess I just have to keep up with the weight loss and dietary changes as there is so much that I want to do with my life. This whole year hasn’t been the best but regardless of the results, I’m not going to let it get me down anymore and live my life normally or at least as close to normal as I possibly can.

I do have low MCHC in the blood and my platelets have been dropping but this could be from the spleen as the liver appears to be functioning ok right now - I’ll know more on Monday about the scarring etc and will update this when I get the Fibroscan results.

Time to put one foot in front of the other and take it day by day!

Thanks again,

L

[Hidden]

hi everyone, I need some advice, so I’m just back from my appointment and thought I’d post an update!

I mentioned all of my concerning symptoms, including my recently normal liver function blood results and the nurse found it unusual as my Fibroscan results are at 254 (fat) and 23.9 kpa

She mentioned that my gastro consultant may want to see me sooner than planned.

I’m now more confused than ever as I’m not even eating fatty foods anymore and have been drinking water only.

If anyone has any advice or can relate I’d appreciate it,

Thanks!

[AyrshireK in reply to Hidden]

Sorry you are still feeling a bit muddled with it all.

Your Fibroscan has confirmed the diagnosis of cirrhosis based on the 23.9 kPa score - it's very unlikely that cirrhosis once formed will go away completely.

Your CAP score of 254 puts you in the S1 (Steatosis/Fatty Liver) grade one where less than a 1/3 (11% to 33%) of your liver is showing fatty change SO your dietary changes and weight loss sound like they have improved this element of your condition so well done you.

Going forward you need to keep at a healthy weight and eat a good balanced diet to keep the fat out of your liver.

Normal pattern of monitoring for someone with any type of cirrhosis is 6 monthly bloods and 6 monthly scans (usually ultrasound, sometimes CT just to check for changes in the liver - addtional lumps and bumps plus to check other abdominal organs and for any signs of portal hypertension and/or fluid).

The absence of a higher degree of fatty change may have posed the question as to whether any other agent has been at work attacking your liver which may be why the nurse thinks your doctor might want to see you sooner - just to rule out any other conditions. Obviously, now the diagnosis of cirrhosis is confirmed they will also want to keep an eye on you with regards to the development of any other symptoms that having cirrhosis can bring with it. Not a lot can be do to treat the cirrhosis other than keeping as healthy as possible but they will need to treat other symptoms/side effects as they come along.

You just need to ride the roller coaster now sadly. That's how my hubby and I have always described life with cirrhosis - there will be ups and downs, good days and bad days and you just have to ride along with it.

Best wishes,

Katie