Need help understanding

[Djc5455]

so my wife has been a heavy drinker for a good part of 30 years now.

The other week her hands became very red and "blotchy" looking. she had also been itching for a good week when she read it "could" be related to liver disease

We paid for an abdominal scan the next day which scanned all sorts around her liver and the report said " appearances are indicative of chronic liver disease"

She even showed my wife where the Cirrhosis is.

went back to her doctors with this information who ran blood test and they said the results are fine and normal and to carry on with life etc and have further tests in 3 months.

We are now worried that either the scan was wrong or the doctors have missed something

could do with some advice as not sure where to go next

I can post blood test results if this helps anyone?

TIA

[1football]

Hi

The thing is blood tests can look pretty good with liver disease especially if someone stopped drinking even for a couple of weeks, think I would go back to GP and ask for a referral to see a hepatology consultant.please don’t think am trying to scare you but am surprised at your GP with evidence from a scan

All the best

[Djc5455 in reply to 1football]

Thanks for the reply

This is exactly what we thought but GP said they don’t reffer with such blood results so sounds like we’ve hit a dead end with them so unsure how to proceed seeing as they won’t help!

[1football in reply to Djc5455]

What scan did you have and with who? Maybe somebody else on here or the admin team have some advice. Doesn’t sound right to me

[1football in reply to Djc5455]

Totally agree with what Katie said,I was diagnosed with hepatitis c 3 years ago and had been carrying it for over 30 years undetected although I’d had numerous blood tests for various illnesses over that time.As a result of this I have cirrhosis & HCC and on the transplant list(11 months)they treated the hep c and am clear and don’t drink alcohol since first being diagnosed as a result my liver function tests are normal and Infact the hospital have said that if it wasn’t for my MRI scans showing my tumours you’d never know how ill I actually am as your liver is quite remarkable in coping despite serious problems but I also know people who’s body doesn’t cope aswell and are in considerable pain & struggling day to day.we are all different.I would definatley go back to GP and be firm with them that you want at best reassurances from a liver specialist.

Best wishes

Huw

[Djc5455]

Hiya it was this scan here:

ultrasound-direct.com/mobil...

Thanks

[AyrshireK]

Even with advanced liver disease Liver Function Tests can return to normal as the liver is 'compensating'. My hubby has known cirrhosis, diagnosed in 2012 after a massive upper GI bleed and late stage symptoms. He has even spent time on the liver transplant list and yet his more recent LFT's are all normal, none are out of range and as we know from his scans and other symptoms he very much still has cirrhosis.

I wonder if putting your request for referral to a hepatologist in writing would help - detail symptoms, detail the findings from the scan results, detail the fact that LFT's can appear normal even in advanced liver disease and perhaps copy both the GP and Practice Manager into your letter. This might get you somewhere as it's going to land in your wife's medical file and then if they don't act on it and your wife deteriorates they don't have a leg to stand on legally. Knowing this they might well act rather than 'risk' this potential fallout. [We did similar when hubbies Gastroenterologist was going to refer hubby to transplant unit in January 2013, by May 2013 we'd heard nothing so I chased it up (in writing) only to find out doctor was off sick himself and no referally was done ..... a locum did it within days!!].

A scan indicating she has liver damage should be acted upon and not ignored. I hope you wife has now hit the booze on the head .......... some medics are reluctant to refer liver cases onto specialists if the patient appears to be doing nothing to help themselves.

Let us know who you get on.

Katie

[Hidden]

dear Daniel

Please do call our helpline between tomorrow after 10am and our liver nurse can talk it all through with you and explain your rights and options.

Best wishes

BLT admin team

[Hidden]

If your current doctor won't refer your wife to a specialist then find one who will. Your story about your wife reminded me of my own situation which I’ll explain to make the point that you shouldn’t necessarily accept what a GP concludes on the basis of a blood test being normal or near normal. Bear with me for going into some detail to make my point.

About 4 months ago I started suffering serious symptoms of liver damage-encephalopathy, pruritus, bouts of extreme tiredness, chronic yawning etc. On researching my symptoms I realised that I had a badly damaged liver from long term use of painkillers (I don’t drink alcohol). I'd had yearly blood tests for many years which were largely normal apart from subtle clues that my liver might be stressed. The only consistent clue was a raised ferritin level (a marker for inflammation) probably resulting from the regular intake of painkillers. My mother died of liver failure from long term use of medications so I may have an inherited susceptibility to liver damage from the use of things like painkillers.

Two years ago I asked my doctor to send me for an ultrasound of my liver and nothing unusual was found so my GP assured me that my liver was fine. Had I known about FibroScans I'd have asked my GP to send me for one. I’m guessing that my GP didn’t know they existed and so sent me for an abdominal ultrasound like your wife had. My understanding is that an abdominal ultrasound may detect liver cirrhosis but not necessarily. I believe that a FibroScan would have shown that my liver was damaged & if I'd stopped taking painkillers two years ago after seeing the result I'd be a lot better off than I now am.

When I started feeling badly I stopped all painkillers and did all I could to give my liver a chance to recover some function. After 4 months of living clean my symptoms have lessened but I still feel sick every day so a few weeks ago I decided it was time to get myself referred to a specialist to get my liver checked. I'm dreading the result and expect it to be bad.

Because I was annoyed with my long term GP for not knowing about FibroScans (I thought GPs were supposed to go to conferences etc. to keep up with the latest medical advances!) and not sending me for one I decided to start afresh with a new doctor. I saw a young female GP fresh out of medical school and after I described my symptoms I was given a blood test. Based on the results she said I couldn't have a damaged liver because my blood test was close to normal (that was after 3 months of living clean). I explained to her that blood tests measure liver function at the time the test is done not liver damage and that my liver was likely compensating but she insisted that my liver was fine and refused to send me to a specialist. She told me that people with liver damage have ALT or AST in the hundreds or thousands while my ALT was only very slightly raised at 42 and my AST was normal. Ferritin was raised at 397 but she said that this could be due to many reasons unrelated to the liver. I then went to another older more experienced doctor in the medical centre who on listening to me outline my symptoms referred me to a gastroenterologist specialising in hepatology and FibroScans. Better to be safe than sorry!

The specialist has a 2 month waiting list for an appointment so I'm continuing to live carefully avoiding anything that might stress my liver while I wait to see him. I have a neighbour who has taken painkillers and anti-depressants for many years who went to the same medical centre as I did and he saw a senior female doctor who referred him to the same specialist as I'm going to see. He was given a FibroScan by the specialist and it put his mind at ease. The young female GP I saw told me that she would not refer patients to specialists unless she believed it was justified because she didn't believe in wasting public money. She was basically saying that she would only refer me if my liver was on its last legs and only a liver transplant could save me! That GP won't see me again. She'll bury her mistakes.

As others have already pointed out a damaged liver may be compensating when the blood test was done masking the fact that it's damaged. You need to find a GP who understands this or perhaps pay for a FibroScan yourself if you can't find a GP that will refer your wife to a specialist.

[Hidden]

Routine blood labs often don't include the AST & GGT liver enzymes. This is unfortunate, as these enzymes tend to flag early stage alcoholic liver disease better than ALT, ALP & Bilirubin. Specifically, AST tends to float substantially over ALT in what is known as a "De Ritis" ratio inversion when alcoholic disease occurs.

GGT is a very sensitive marker for liver inflammation, and alcoholic inflammation in particular. Heavy drinking can cause an elevation even when advanced disease is not present, but GGT typically goes into triple digits in active drinkers who are developing advanced disease.

A substantially elevated GGT combined with a significant De Ritis inversion is the best indicator of early stage alcoholic disease to be gleaned from labs. If you haven't had these done, they could offer some clues. These are cheap tests and your doc shouldn't mind ordering them.

[Faithfull in reply to Hidden]

Is the GGT (gamma) mine when I first was in hospital to stop drink it was 556 I'm sure it was that that's bad in it