Worried about liver disease: Hi all... - British Liver Trust

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Worried about liver disease

Adamlon82 profile image
29 Replies

Hi all,

First time poster here, severely worried about my liver. I’m 38 and have a 10+ year history of alcohol abuse. However, 3 years ago after developing abdominal pain on my right side I very gradually slowed down. I was down to less than 15 units/week last year and have been completely sober for the last 6 months.

However, my symptoms have gotten worse over that time. I get loose stool every day, I’ve lost a lot of weight, mild nausea/dizziness, itchy skin (sometimes intensely), long belt of capillaries around my waist and an ache on my right side beneath the rib.

I had an MRI and CT scan in December but it didn’t show any abnormalities so I haven't received a diagnosis so far. However, my ALT has gone from 40 in November to now 60 and that’s after I stopped drinking so I don’t understand. I eat as healthy as I can avoiding red meat, fried food, salt and excessive sugar. I exercise as much as my body allows me. I also tested negative for Hepatitis A, B, C in December.

I spend all day worrying because I don’t know what I can do to stop my health from slipping away. I guess quitting drinking completely wasn’t enough. My question is, if you have liver disease is there anything you can do to stop it from progressing further besides diet and exercise?

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Adamlon82
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29 Replies
Adamlon82 profile image
Adamlon82

Thanks for your reply. However, I read that MRI & CT scans can miss liver damage, especially if it's earlier stages. The fact that the ALT (liver function test) keeps going up indicates that something isn't right with the liver.

I am pursuing this with a GP as well but it's a slow process so I'm hoping to get advice on here in the meantime from anyone that may've had a similar experience.

in reply to Adamlon82

Keep reading through there are numerous posts the same as yours.

TBSW profile image
TBSW in reply to Adamlon82

Congratulations on staying off the booze. I'm sorry your feeling anxious, like Laura said, your doctors are the best people to put your mind at rest, and as you appear to have had a lot of investigations already, then I'd try to look on the positive. I know you are experiencing pain, but someone with liver disease doesn't normally experience any pain. Maybe you've been overdoing the exercise and it's muscular, worth mentioning next time you see your doctor. Good luck

Danubian profile image
Danubian in reply to Adamlon82

I don't think MRI misses any liver damage, and with regard to earlier stages, chirrosis liver damage does not develop in weeks or a few months - and why would any damage develop after you had given up? Anxiety can cause your symptoms, your body is pumpin' out da cortosol and adrenalin like there's no tomorrow. It's pumpin' through your veins and when its hits the digestive system - man that's when the fun starts. I lost 20 kilos - I could have sprayed a field of crops three times a day, that would have been fun, but it was the 24/7 nausea which was killing me and preventing me from sleep. The two hours of sleep per night consisted of nightmares. That was really bad. And all becuase I had anxiety.

Adamlon82 profile image
Adamlon82 in reply to Danubian

Thank you for sharing your experience. Sounds like you've had a rough time. I totally get that anxiety can make symptoms worse and it probably is in my case but I don't think that is the root cause. I generally don't suffer from anxiety and a was fine a year ago. Then in the last 6 months things started to deteriorate. Perhaps there isn't any cirrhosis that would show on the MRI as you said but it feels like my liver is struggling.

Danubian profile image
Danubian in reply to Adamlon82

Well I never had anxiety either, and was never ill and thought I was invincible -until the anxiety hit me. It developed within a couple of months to the full blown variety. Started as cracked corners of mouth then to stomach and moved downwards . Could eat only half a roll a day. Sores developed at the back of my throat - malnutrition -my tongue turned white - I was told by ENT to immediately see skin doctor who thought I might have syphilis LOL. Man the lab here in Lübeck know me well - best customer - been tested for so much. AIDS, gastroparesis, rocky mountain yellow fever - you name it - I thought I had it . I woke up 8 times a night just to look in the mirror to see if I was going yellow. My neighbours who are unpleasant thought I was croaking . I looked bad. It was only after the doctor told me that 100% my body was fine that the nausea left within a day or two. Now I'm a little too fat :-) By the way, MRI will pick up fibrosis too - I specifically asked the radiologist about that.

Kettl profile image
Kettl in reply to Danubian

Bloody anxiety is doing my head in. Can’t function. How did you overcome it? Or was it just the G.P saying all was ok.

Welcome to the forum. Well done with your lifestyle changes.. A diagnosis of liver disease is made with a combination of investigations as you know. If your doctor draws a blank with regard to liver disease then he/she will no doubt investigate further.

We do have a free telphone helpline if you would like to talk to one of our liver specialist nurses:

10:00 - 15:00 Mon-Fri 0800 652 7330

Just for your interest too, here is a link to Liver Tests explained.

britishlivertrust.org.uk/in...

Adamlon82 profile image
Adamlon82 in reply to

Thank you. Just to be clear, I'm not seeking a diagnosis, just opinions/advice. It's taking weeks to get a follow-up with my GP and I'm struggling with stress. When I do see him it's better if I'm armed with more information/better questions which is why I'm here.

If I carried on drinking I would understand if my ALT kept rising but I haven't. Other symptoms like itchy skin, nausea/dizziness are a worry. I'm finding it difficult to maintain my weight even though I eat as much as I can. In fact I have lots of symptoms mentioned on the British Liver Trust website which makes it difficult for me not to believe that my liver is struggling.

Is it possible that there's an infection (other than hepatitis) that could be attacking the liver?

in reply to Adamlon82

Hi,

Have a look at the Liver Tests info and see what the range of liver tests is, you could then ask your GP which ones have been done in addition to the hepatitis ones. If you feel things are moving too slowly maybe you could speak to the practice manager about your concerns and see if things can be speeded up. Has the GP arranged to repeat your liver blood tests in the near future so you can see whether the ALT is still up?

Adamlon82 profile image
Adamlon82 in reply to

He hasn't arranged for another blood test but I've had a few other the last few months and very time the ALT increases. November - 41, December - 47, March - 56, April - 60. The other indicators within the LFT are within the range. My red blood cell count is a bit below the range but everything else looks ok.

It scares me that it keeps going up so quickly and I have no idea how to make it stop. My next appointment is 3 weeks away and I can't even get a phone call before then. He mentioned the next step would be a referral but I'm afraid that could take months.

in reply to Adamlon82

I would certainly suggest speaking to the practice manager regarding not being able to get a telephone appointment for 3 weeks. Also, I would have thought it might be helpful for the GP if, prior to the appointment, he/she had an up to date blood test to look at the trend in your results.

regards

Adamlon82 profile image
Adamlon82 in reply to

Thanks, I'll try but my practice is not very empathetic. Unless it's an emergency you can't get a telephone appointment for weeks.

WorriedUK01 profile image
WorriedUK01

Are you taking any medications? Have you been unwell with a cold or flu? Have you had a fibroscan or ultrasound done?

Adamlon82 profile image
Adamlon82 in reply to WorriedUK01

I had a chest infection back in October but it wasn't Covid. Then I was diagnosed with asthma which is when things started to go downhill. I've never has a fibroscan done. Is that more accurate than an MRI?

WorriedUK01 profile image
WorriedUK01 in reply to Adamlon82

Google fibroscan. It’s basically a non invasive equivalent of a liver biopsy. Tells you how stiff your liver is there and then. They can then gauge how damaged it is based on this score.

MrsN1976 profile image
MrsN1976

Definitely put it back on your doctor to determine why the increase. There are health conditions and medication issues that can cause that I think. Do you have stretch marks at your waist? Is your doctor aware of that as well? Take care.

Adamlon82 profile image
Adamlon82 in reply to MrsN1976

I'm not on any medications at the moment. I don't have stretch marks but there's a long belt of dilated capillaries around my waist. My GP has seen them and said they could be indicative of liver damage.

youngandworried profile image
youngandworried

Your ALT isn't actually very high at all. Mine is around 300. Your ALT can fluctuate up and down depending upon how active you've been, what you've eaten/drank etc. Obviously still pursue this with your doctor, but I wish my ALT was as low as that.

Adamlon82 profile image
Adamlon82 in reply to youngandworried

Sorry to hear about your results. Hopefully it will improve. Are you experiencing any other symptoms like itchy skin or nausea?

youngandworried profile image
youngandworried in reply to Adamlon82

Hi Adam. The only symptom I have is occasional abdominal pain. I have NASH with some fibrosis but not cirrhosis.

NCanning profile image
NCanning

I have fatty liver. I'm in a slightly similar situation, in that my ALT was 54 but went up to 80 something after 6 weeks of not drinking 🤯I also actively lost a decent amount of weight in that time, my high cholesterol had improved a lot, and they therefore have no clue as to why the ALT has increased. I am having more bloods taken in June to see what they're like at that point

Adamlon82 profile image
Adamlon82 in reply to NCanning

Thanks for sharing. Looks like other people are in the same boat. Mine has increased over 6 months of not drinking and eating healthy. It's frustrating not knowing why and not being able to do anything about it.

NCanning profile image
NCanning in reply to Adamlon82

It's so frustrating. One suggestion given to me is that when you actively change your habits, the body and organs take a while to respond and get used to it, which can cause some stress to them. I.e if your body has been so used to having a lot to drink plus quite a lot of unhealthy food, then it'll take a while to react and adapt to a significant change. I guess it's like a lesser-extreme version of going cold turkey.

Adamlon82 profile image
Adamlon82 in reply to NCanning

That makes sense. Although I very gradually quite my drinking. I wasn't drinking more than 15 units/weeks last year before I stopped completely. Also, I wasn't eating that unhealthy either. It's just now I'm eating even more healthy.

Kuntzie13 profile image
Kuntzie13

It’s crazy how much this story sounds like mine. I have crazy pain on my right side, quit drinking and it continues to get worse. All my labs and scans have been normal it’s insane.

Debs365 profile image
Debs365 in reply to Kuntzie13

Same for me it’s driving me mad

Kuntzie13 profile image
Kuntzie13 in reply to Debs365

Me too. I have some digestion issues but had my gall bladder out 10 years ago and really have always had digestion issues but it’s been different this time. Other than that I’d say everything is normal? Pain in my right side and digestion issues, but the pain trumps all.

Debs365 profile image
Debs365

Yea pain on my right side too pretty much constant sometimes front sometimes side, shoulder too! Feeling tired all the time aswell, and not great appetite of more recent even though I quit drinking 3 months ago,

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