Absolutely Baffled and Terrified

[LuckyStar37]

Hello all

I’ll try to keep to a brief set of facts!

Nearly 37, overweight, and have had 3 children who are all under 10.

Have drank over the years but not binged! Anyone who knows me will say “you don’t drink that much and you always stop when you’ve had enough”.

Liver levels started changing about 3 years ago, various elevated levels. Doctor maintains it’s because I have developed fatty liver (but was specific that I haven’t reached fatty liver disease yet)

Recently attended FibroScan which shows F3, and “they don’t know why”.

The guy doing the scan was flummoxed and said when we discussed weight etc that “this hasn't caused this, yes you are the higher end in terms of fatty liver but you do not have fatty liver disease. This scarring is not moderate it is severe”

This was 13th Nov, next app 20th Dec and liver biopsy to be organised although consultant said there is “no urgency” as the liver functions.

HOWEVER.

My mum just had transplant due to reaching end stage liver disease without even knowing it. Yes she liked a bit of wine but only the last 15 years - never drank when we were children - absolutely shocking.

How can I have a reading as severe as this yet there is no urgency?! How can they be fully aware they may be a hereditary element and just not act?

I am absolutely more sensitive to the whole thing after nearly losing my mum, but I don’t understand how this could’ve happened. Yes I need to lose weight, and since the scan have stopped drinking completely (even though I hardly did!)

In a spin- need advice

[LuckyStar37]

just to add - I suffer with itchy palms with no rash constantly and feel like there is something wrong. I have liver spots round my eyes that started during pregnancy over 10 years ago. I thought my stomach popped out a bit from my babies but I think it could be liver.

Even the letter I received said the FibroScan results could’ve been skewed by weight, but I just don’t see how that could be the case.

[Onesmallstep1969 in reply to LuckyStar37]

Hi Lucy,

You've taken a good step in coming to this forum. We all have seen bad days and most of us have come out of them into better days. So, welcome!

Your itchy palms are a common sign of liver disease. Itchiness occurs because of high levels of bile acid in your blood. If you have your "bilirubin" tests handy, they may show higher than normal levels in your blood.

The best thing you can do is hard--don't worry yourself too much. Then, take action. Liver disease can be slowed or even reversed if you're lucky and do the work to help your body heal. That will mean making lifestyle changes, and believe me, this is not easy. even after you know the consequences of bad habits.

Of course, stop drinking. But find something healthier to replace it with. Find your favorite and make it a habit to sip it. It will over time help you to stay away from the alcohol. That, plus counseling to reinforce good behaviors. Remember, habits got you to where you are and habits will lead you toward a better place.

You may also need to make changes to the food you eat. A consultation with your doctor needs to cover this.

Exercise, if you don't already. Walking is wonderful for the body generally and your liver loves it. With little ones around the house, you may already do more running and weight training than professional athletes.

Sorry to have gone on too long. Again, welcome, don't worry and start to put in place new healthier habits!

[MINTVCX]

Well you have to wait for your liver biopsy result. Meanwhile maybe you can ask if there is a result of your mum's biopsy origin (removed) liver. It can help for your diagnosis. Good luck.

"Genetic liver diseases include Wilson disease, hemochromatosis, and alpha-1 antitrypsin deficiency."

But you we can only guess if this is your case. I think your liver biopsy is going to show more.

[LuckyStar37 in reply to MINTVCX]

Thank you so much for the reply!

[BritishLiverTrust14 Moderator]

Dear LuckyStar37,

If you would find it useful to talk things over, our nurse-led helpline is open Monday 9am to 3pm and Tuesday to Friday 9am to 4pm on 0800 652 7330 (excluding bank holidays).

If you have liver disease eating a good, balanced diet is essential to maintain strength and a healthy weight. Here is the link to information on Diet and Liver Disease on our website, which you may find useful

britishlivertrust.org.uk/in...

You might also need to change the food you eat depending on:

the type of liver disease you have

the stage of the damage to your liver - people living with cirrhosis have special dietary needs

any eating difficulties you experience such as loss of appetite or feeling sick (nausea)

If you have already been given dietary advice you should not make changes without first talking to your consultant or dietitian. If you haven’t seen a dietitian, or you have specific questions about your diet, you can ask your doctor to refer you.

Best wishes,

British Liver Trust

[TheTimer in reply to BritishLiverTrust14]

Hi BLT, just a note to say thanks for this site! Nothing like it that I have seen in the US. My wife has NASH/MASH or whatever they are calling it these days. Reading real-time experiences of other people gives a great perspective. I've done a lot of online research on the topic but BLT is near the top of my list.

[Readlots]

Hi Lucky, I know how scary it can be to have the same scenario happening to you as happened with your Mum. I’ve been in the same shoes. Fatty liver seems to be the standard diagnosis for anyone who has raised liver enzymes and isn’t a big drinker. However, further tests including fibroscan, biopsy, ultrasound and blood tests can show up other causes of liver problems. My Mum and I both had/have autoimmune diseases and I also have a genetic condition. The good news is that there are treatments for some of the diseases so hopefully you’ll get a diagnosis and start treatment. You’ll get through this scary stage of knowing somethings wrong but not what and not starting treatment. Hang in there

[LuckyStar37 in reply to Readlots]

Thanks so so much for your reply. Such a comfort at the moment! Xxx

[2022minks]

Sending you some Big love, and as others here have said that once you have test results back your consultant will be able pin point what is the cause, and how to treat going forward.

One thing in relation to your mum not being diagnosed till it was too late and transplant was her option, hopefully in something being spotted in your livers health that this earlier diagnosis will mean your livers health can be managed with lifestyle changes and medication and that your treatment will be different to your mums. Let us know how you get on, this community is here for you and your family xx

[LuckyStar37 in reply to 2022minks]

Really appreciate the love, really has comforted me being able to put it out there and tell people I am so scared if I hadn’t just seen my mum nearly leave us because of her liver I don’t know I would be as worried. But it definitely wasn’t nice and I don’t want my babies to see their mummy go through it too xxxx

[2022minks]

Can I also say when you next see your consultant that you reiterate your mums history as to me they shouldn't regard you saying no urgency because of your mums history if they are able to spot something earlier in you that results in you being able to make changes and avoid a transplant like your mum then having these tests to pin point if anything is wrong is still in your best interest. Xx