Cirrhosis?: I just had my ultrasound... - British Liver Trust

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Cirrhosis?

Anon99999 profile image
17 Replies

I just had my ultrasound yesterday but awaiting the report to go to Gastroenterologist. The Dr performing the ultrasound yesterday did discuss the results with me but has yet to write the report. I had an inflamed and enlarged liver on ultrasound when admitted to hospital 10 weeks ago (for Alcoholic Hepatitis) along with raised LFT. I haven't drank since and am eating a healthy balanced diet with plenty of water.

LFT are now almost normal as of last week (ALT 60, GGT 80 are the only ones raised everything else in range including bilirubin, albumin, globulin and platelets at 270 (they have been 270, 220, 370, 270 over the past 8 weeks)

The doctor doing the ultrasound advised that my liver is now normal size and there is no longer inflammation but there is scaring however he said it is at the lower end of the scale, I said Fibrosis or Cirrhosis and he said that it was the same which has confused me, I thought that Fibrosis was reversible but Cirrhosis not. I asked if it was reversible but he just said it won’t get any worse if I don't drink but not reverse? My spleen is also mildly enlarged at 14cm (said this is 0.5cm over for my height of 5ft10) but all blood flow is normal. Confirmed no Ascites. Liver appearance is “relatively smooth”. Did not give any further details so am a bit lost at the moment. Gastroenterology are referring me for an endoscopy anyway to check for varices and then I will see the consultant again to discuss both results.

I’m feeling really down at the moment and have all of the below symptoms since being admitted for Alcoholic Hepatitis on May 23rd. From the Ultrasound the inflammation is now gone but there is scaring, just wondering if these symptoms are likely to improve now as it’s really getting me down, I’m off work because I feel so unwell. Feel at a loss as to what else I can do.

Symptoms -

Weight loss Muscle wasting (from 14st7 to 12st13 since the AH)

Nausea

Joint pain/looseness/clicking

Not digesting food properly (undigested food in pan)

Fatigue

Sleep disturbances

Gynomastacia

Testicle Atrophy, lack of libido

Spider veins on face / rosacea

Pale gums

Nail changes - loss of lunar on most fingers

Puffy Bags under eyes

Hair loss on head

Bruises not disappeared since hospital

Other symptoms which have improved -

Spaced out, brain fog

Pain in upper right quadrant - intermittent

Dizzyness and off balance

Muscle twitches / jerks

Neuropathy in hands and feet (prescribed vit b and thiamine)

Thanks.

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17 Replies
AyrshireK profile image
AyrshireK

All you can do is keep up with sobriety, healthy eating and exercise and do ALL you can to help your liver to improve. Doctor has said early cirrhosis so yes that would be fibrosis and your liver isn't showing signs of massively altered structure so hopefully you can stop further deterioration and possibly reverse some of the damage done. Cirrhosis 'used to be' thought irreversible but early stage may be improve.

Obviously you've got several symptoms which indicate your liver has been/is struggling and will potentially take some time to clear. Alcohol related hepatitis has many overlapping symptoms of cirrhosis SO as your liver gets a chance to heal hopefully symptoms will reduce.

The BLT has a page all about cirrhosis which may be useful :- britishlivertrust.org.uk/in...

* All is not lost even with a cirrhosis diagnosis, providing you can do all you can to keep your liver well you can live a good long life even with the condition. My hubby has been living with a diagnosis of cirrhosis since April 2012 when he almost died after a massive variceal bleed. His condition is auto immune in nature and the damage was done before we even knew it.

Katie

Anon99999 profile image
Anon99999 in reply to AyrshireK

Thank you, Katie, I have read a lot of your posts on here over the past few months whilst going through this and they have really helped, hope you and your husband are doing well. I have also spoken with the nurses on the helpline who were lovely, just looking for some reassurance that symptoms can improve and anyone else who may be going through similar as I'm feeling really down at the moment and it seems strange to get all these symptoms with almost normal bloods and just little scaring showing. Being 10 weeks alcohol free and with the inflammation only just going down, can I reasonably expect improvements over the next 3, 6 months, 1 year etc.

AyrshireK profile image
AyrshireK in reply to Anon99999

It's taken years for your liver to get so poorly so you should expect it'll take some time to start showing signs of healing (and it can). My hubby went from decompensated, listed for t/p 2014, delisted 2015 because he stabilized and is still very much alive and kicking with fewer of the nasty symptoms now and that's without being able to do anything about the underlying cause of his illness. He just eats well, exercises and doesn't let it grind him down. You have got to ride the roller coaster - make the most of good days and write off the cr*ppy ones.

Katie

Wolivere profile image
Wolivere in reply to AyrshireK

We celebrated my wifes Birthday Yesterday. Its been just over 6 months since she passed.

Her history was, she had a previous history of Bulimia or we thought it was. But it turned out, she had a sliding hital hernia. And was having issues causing her to throw up now and then after a large meal. So it was ruled out as being a picked up habit. Vs Gastro Reflux, and Bile Reflux.

Her issues back in 2018-2019 was an under performing thyroid. She had hurt her hip in a fall. And the hospital here did an Ultrasound and CT of her Abdomen, to see if pain was radiating from the Gallblader to the hip. And her CT showed a normal liver/Gallblader.

We moved to Vegas with my work in May of 2019. Her brother was a heavy drinker, he use to like his 4 finger shots. Margaret would pour a few shots for her self. Not 4 finger, she and we are non drinkers. So the only time we drank was a glass of Wine at Christmas, and Thanksgiving. But she would take a sip and toss it out. So I would say over 3 weeks we stayed with them while waiting to get our house, she may have drank 12-18 ounces of Jack Daniels. To me not a lot.

In January of 2020 she got covid. She spent a week in hospital, they hit her with Heavy Anti Biotics. The also did a CT of her Chest Abdomen and although they were not looking at the liver. It said Liver nothing abnormal, and Gall bladder spleen etc no abnormalities.

After that she struggled to eat, she could taste nothing. Smell nothing. We went as far as buying her nose plugs to try and eat.

Her weight started to plumet, she went from 195 pounds down to 97. In Sept of 2020 we took her back to the Hospital. They ran numerous tests her LFT's were normal, except GGT was at 55, and her Billi's were just a touch high. But her liver was at 25cm. Spleen Normal.

They said she had sudden onset NASH from rapid weight loss. And it will resolve itself with proper diet. And sent her home.

By Oct she was worse, we rushed her to a different hospital. Her liver was now at 32cm. She had masses on her liver. 2 were compressing the IVC, and Portal vein. Her Spleen was around 12.1 cm.

She had raised cancer markers, so they thought she had developed liver Cancer. And started numerous tests. They did 2 liver biopsies. One showed Grade 1 Fibrosis? right lobe, the other showed grade 3 fibrosis. Both showed normal liver architecture, one showed bridging with no portal damage, the other showed no bridging.

Her LFT's remained perfectly normal AST 16, LFT 14, ALP 89 LD 118. But raised Billis, with a slightly increased INR that would bounce around from 1.0 to 1.4.

CT/Ultrasound showed normal liver contours, with a mildly echogenic texture.

While trying to figure out what to do with the masses. The compression on the Portal Vein, she developed grade 1 and 2 varices, with 1 bleed. Mild bleed, but they also said they think she had friabal mucosal lining due to portal hypertension. The Lining was easily injured but showed no tell tale mosiac pattern.

Suddenly the masses vanished, and the varices vanished. Doppler showed a normal portal vein with normal pressure.

The Doctor ruled her liver should return to normal. A follow up in may her liver was down to 25cm, then in June of 2022 it was down to 16cm. And in Nov 2022 she went back in she had grade v Eshaphugeral erosion, with a bleed. The Ultrasound was normal, the CT was normal. Her LFT's were normal. Except elevated billis and a low hemoglobin. Good Platlet count.

Someone though got confused with her US biopsys and wrote into her chart she had NASH Grade 3 vs Fibrosis grade 3. So the doctor said the biopsys says your wife has cirrhosis. Yet I see no signs of it. So we are going to work on the hypothesis she has cirrhosis, while we figure out what is going on.

By Jan 30th she was dead.

What we have now discovered, during her initial Covid stay they used a combination of Medications, Cefalexin, and Vancomycin. They believe the Cefalexin caused a drug induced hemolytic anemia causing her bills to rise. And she received an AKI from the Vancomycin.

She did well after though. And they again used Cefalexin in Oct 2020 when she went back in.

In June of 2022 she went in for cellulitis, was mild topical on her left calf. Again they used a combination of Cefalexin and Vancomycin.

Again her HGB dropped like a rock, and her Trough levels for Vanco was in Toxic levels. And they admited her to treat the AKI.

She stayed in for 3 weeks, stabilized came home.

When she went in again in November for the erosion, again they used the same combination. Suddenly her HGB crashed, and she had serious AKI. Which they admited her for, then she got covid, RSV, went into a coma for 3 weeks from use of a different medication she had a bad reaction to.

The doctor was so confused, as to what was going on. Her LFT's were stable and normal CT/US normal. But could not figure out why her INR was up was at 1.4 went as high as 1.8, then dropped back to 1.

Over the course she had 4 vanco troughs that were higher than 45, she then passed in her sleep from Renal failure.

But one doctor continued to argue she had Cirhosis. which drove me bonkers.

My wife is gone, but all I can tell people get second opinions get an advocate.

Millie09 profile image
Millie09 in reply to Wolivere

Hi wolivere, I'm so very sorry for your loss, and my ... how you both went through so so many trials and tribulations.. that in itself is enough to get you down .

My condolences to you and yours ,and thank you for your post

My best wishes

Linda

Realy profile image
Realy

did you have a regular ultrasound or fibroscan ?

Anon99999 profile image
Anon99999 in reply to Realy

Regular Ultrasound.

I had a Fibroscan 6 and 3 weeks before the Alcohoplic Hepatitis and the scores were 14KPA and 12.5KPA (CAP was high S3 and then S1) (I was in a country where I was able to get them done cheaply and next day) but I understand these may be inaccurate as I had only just stopped drinking on the first one and the other one was 3 weeks after stopping drinking. Unfortunately I felt a lot better then and and my bloods returned to normal after 6 weeks abstinence, I drank for a week and ended up in hospital with the AH. Also had a bacterial infection in my elbow and cellulitis a few weeks after AH which landed me back in hospital agin on 8G Flucoxicilin IV for 5 days and then 2 weeks at 4G oral Flucoxicilin although the last week I had them change the antibiotics as I was feeling so ill, infection cleared, antibiotics were finished 5 weeks ago now.

Realy profile image
Realy

I was unaware that ultrasound could see scarring. I thought only architectural changes . I’m sure he will send for more testing to correlate.

Anon99999 profile image
Anon99999 in reply to Realy

I will get more information when I see the Gastroenterologist again after the endoscopy is done. I’ve gone private for all the tests so far as still waiting for the NHS referral since coming out of hospital. I’ll try and get another Fibroscan also now the inflammation is gone. Just hoping the scaring can be reversed and symptoms improve as I feel terrible at the moment. I’ve had my GP run blood tests for vitamin levels too, these were also normal but not sure if there’s specific ones I need as I’m sure I have malnutrition. I noticed Creatine kinase was right on the low end of normal (30) but neither GP nor Gastro was concerned although I read it can indicate muscle wasting which I’ve had a lot of, giving me lots of pain with my back, shoulders, basically all joints are loose and clicking, aching. Smart scale also shows Bone density right on the bottom of normal whereas it was consistently on the top end until I’ve lost the last half a stone, appreciate these are not really accurate though. Is there anything I can take to help with this? Worried about Osteoporosis, would a DEXA scan be worthwhile? What referral would I need for this? I’ve got Bupa through work so going private is fortunately not a problem at the moment, although I desperately need to get back to work!

Realy profile image
Realy

I’m in the states so for me it’s been blood work?ultrasound, fibroscan, and Fibrosis blood test. And more ultrasound and bloods. Due for another fibroscan in November.

Anon99999 profile image
Anon99999 in reply to Realy

Hope you are doing well. Have you been diagnosed? What were your symptoms if you don’t mind me asking? My AST, ALT, GGT have been mildly elevated for years but were all massively elevated during the AH but have now subsided with only ALT and GGT just outside range. I’m not sure if Fibrosis blood test is available in the UK however I’m not sure if it’s needed now, I guess Fibroscan would be worth having again now inflammation has gone. I’ve read about people having improvements after 6 months or longer following quitting drinking so hoping I am just at the start of recovery now I’ve stopped and these symptoms can improve.

Realy profile image
Realy

I have fatty liver fibrosis/ steatosis. Fibroscan last august. I got my metabolic issues to Normal and have lost 60 pounds. Had fibrosis blood test in February and came back minimal Fibrosis. Kept on track and had follow up ultrasound liver now normal and Homogenous Parenchyma,wich the Dr said is good. All bloods and no longer type 2. So I’m due for fibroscan in November. I’ve learned a lot here on this site.

Paul_Mac profile image
Paul_Mac

Don’t recall how I came across this, but saccharomyces boulardii (S. boulardii) might help? (It’s a type of probiotic ("friendly" organism). It's a yeast that is actually a strain of Saccharomyces cerevisiae. WebMD) might help. Here’s a link to one study regards cirrhosis.

wjgnet.com/1948-5182/full/v...

Galo profile image
Galo

Exatamente como eu. fui diagnosticado com Esteatohepatite alcoolica Reduzi o consumo de alcool mas não parei. Vou indo bem. Não pretendo parar de beber. Isso tornaria minha vida insuportável. Não vou despertizar os anos que me restam comendo biscoitos e vendo televisão. (Tenho 77 anos) Deus os abençõe.

Qwertrew profile image
Qwertrew in reply to Galo

Caro, ja tem muito tempo bevendo assim? tem mesmo idade avançada. Mas con um fib-4 a 4,8 nao nem ainda sintomas cronicas, alem daquela vez do hepatite?

Galo profile image
Galo in reply to Qwertrew

Bebo acima do razoável há cinquenta anos. Atualmente reduzi minha média de consumo em 75%. Não tenho nenhum sintoma ainda e vou levando. (Aliás, não confio na fib-4). Mas não quero servir de referência. Não me tome como exemplo. Te cuida!

BritishLiverTrust3 profile image
BritishLiverTrust3AdministratorBritish Liver Trust

Dear Anon99999,

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Kind Wishes,

British Liver Trust

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