I'm slightly confused. I went to the Love Your Liver roadshow for a fibroscan which gave me a result of 12.2 - not surprising given the years of high level meds I've been on, plus excessive alcohol consumption. I went to the roadshow expecting this result, I've lost loads of weight recently (not intentionally), am tired, black stools, liver pain, can't eat as no appetite - yet the GP says my liver function and other bloods have come back fine and that there is no further action required?
OK, I still am drinking, but I've also been put onto a new medication, Duloxetine, which is regarded as not at all good for livers, especially with alcohol.
I spoke to a local liver consultant at the roadshow when I got the result and he said he expected to see me at their unit once I had my LFT back, as he expected it to be as lousy as my fibroscan result.
I was expecting that too, so I would then be told I CANNOT drink (by a hospital consultant hopefully), which is the only thing which will stop me, truth be told. I have a psychological obsession with it, due to my personality disorder. I don't really get withdrawal symptoms, despite over 20 years of nightly consumption, currently I get through around 150 units a week, down from over 300. (yes, those zero's are right - at least I'm not in denial). So I'm not physically dependent, which is weird considering, but that's how it is.
Anyway, the GP is sticking with the LFT result, even though I know they are notoriously inaccurate, and I needed a shock of some description to make the lifestyle change required. I'm disappointed it hasn't happened, but now my head will keep telling me it's OK and there's no problem. I only drink on a night, work all day, look after kids etc. But my 8pm obsession hour is totally over-whelming.
I've been to AA, self-help groups, Addictive behviours services, online counselling, hypnosis but none of them have worked. In fact, AA made me want to drink more, it was so depressing and unfortunately, I don't believe in a higher anything whatsoever so it's not for me. I suppose what I'm asking is, despite me showing the surgery my fibroscan result, with the letter from the roadshow, they are dismissing it and going with the bloods. I can't go and admit my true unit consumption due to my personal circumstances, and don't want to annoy the surgey by being awkward, but I'd have thought the scan was more reliable than the bloods??
PS: Please don't tell me to just stop drinking, if it was that easy I'd have done it years ago, I've tried to quit for over 10 years, but never manage more than 2 nights every few months or so. I was really hoping the LFT would be really abnormal to make me have no choice, so I feel a bit, well, annoyed? resentful? that the bloods seem OK. Hope that makes sense...
So what next??
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TheBigF
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A fibroscan of 12.2 in a patient with alcoholic liver disease is borderline cirrhosis. Cirrhosis is, so I understand, irreversible. With fibrosis, which you are probably at the top end of, bordering on early cirrhosis, you still have the chance of improving the health of your liver if you give it the TLC it needs. Once you have established cirrhosis, its not possible to reverse the liver disease. You can slow down the progression of cirrhosis, with lots of TLC and especially no alchohol, but you cant stop it, eventually you will progress to end stage liver disease.
I would guess you have been given a warning by the fibroscan result that you still have a slim chance of stopping the fibrosis progressing to cirrhosis, but just a slim chance.
GP's aren't specialists in liver disease - they aren't specialist in any disease, that's what the 'general' in General Practitioner means. Well done you for getting the fibroscan done. I would keep that diagnosis in mind, rather than being shrugged off by the GP as someone with ok LFT results.
I wont tell you to stop drinking, but if you dont stop drinking your liver will inevitably become cirrhotic with the further complications that will eventually present, such as varices, ascites, HE, etc etc.
I know. I just find it unfathomable. I'm wondering if the Liver Trust know the names of the consultants that attended our roadshow, I could at least contact them personally and say GP won't refer and see what the options are. The consultant said they'd be pleased to work with me and thought that because I was so honest, we could get somewhere. I dared myself for 5 hours to go get the scan and was absolutely 100% honest with the BLT people. It now seems the GP's are acting as 'gatekeepers' and they won't entertain any further action.
I understand it's entirely my own fault, I'm not seeking to blame anyone else for my own choices, I've been on high level opiates and psychiatric meds for over 20 years (all prescribed) and have drank too. I know what I need to kick my backside, but it seems to have fallen on deaf ears. I believe the fibroscan is far more reliable than bloods, but the GP's are just not buying it. It's been bad enough worrying myself stupid over it, but now I feel like I know there's a real problem, but I can't access the treatment I inevitably will need (from liver and mental health specialists).
I had to go to a walk-in emergency GP 4 weeks ago (I only got a new permanent GP 3 weeks ago, after a year with no medical care) as I vomited blood quite profusely, they gave me Gaviscon and some other anti-acids and packed me off... I did point out my potential liver/drink problems and was told I was worrying about nothing. Evidence suggests otherwise...
It would be so much easier if you could self-refer, in my opinion; as you can't, then am I just to guess what's the best thing to do? Diet wise, I don't really eat, so no salt etc is more than do-able. I only have about 3 meals a week and only drink water through the day.
I also think it useful, for other readers, to clarify what seems to be a strange position I'm describing, regarding obsessive personality problems. Personality disorders are notoriously difficult to treat, just management is the best you can hope for mainly. Sadly for me, my obsession is red wine. Not alcohol, not any alcohol, just red wine. I am highly intelligent, I can see how my chosen actions affect me, but the compulsive nature of my illness trumps common sense, even when, like now, the writing is on the wall. As I said, it's not like I haven't tried to sort it, I spent over £1k on private therapy this year, but still no success....
I have to stay sober Sunday night, so that will be day one again. Again...
My worry is that even if I do kick the habit (OK, unlikely but possible), I think I may need some other meds to help the liver, but my doctor won't send me to the specialist - is it worth going through hell if I'll keel over anyway without proper medical help? Or is just stopping drinking enough? Answers on a postcard a la Blue Peter....
And thank you @Bolly for your considered response, very much appreciated xx
Hi big F ,i wanted to say i admire your strenght in being honest not only with the roadshow but with your self. Im so sorry you have had a bad experience with your gp. Unfortunately it can happen.. I have had the gp brush off before and have becone quite ill but luckily persistance and a demand to se a different gp in my practice led to myy eventual diagnosis of AOHA and AIH. My consultant belives i have had it some time and earlier diagnosis could have avoided fibrosid. I think what i would like to say is dont be brushed off especially if you have been given such ibformation at tge roadshow. Everyone is entitled to a second opinion. Rsise ypur concerns clearly and strongly perhaps with a differebt gp at your practice. I ubderstand you say you perhaps cant give gp all info refardibg causes but remember they have a duty of care and are not there to judge you. The more info they.have the more they can do.
I wish you all the best abd hope very mucg you get tge help you need to get as healthy as you can both for you and family.
Hi Big F, I am sorry to hear your story and am alarmed that Doctors have sent you off home following vomitting blood. When my husband vomitted a huge amount of blood one night (after passing black stools for some time) I rushed him into A&E and he was immediately admitted - both are and proved to be symptoms of portal hypertension and bleeding varices a side effect of cirrhosis of the liver & the first we knew that he was ill.
Unlike you he has never drank in his life and the cause of his serious liver disease has proved to be some auto-immune ailment, however, bleeding varices in the oesophagus is a very serious and life threatening condition so if it happens to you again get yourself to A&E no messing about & if you are consistently passing blood in your bowel motion don't ignore it. Your fibroscan has proved you've got liver damage, bypass your GP and get to A&E as you are poorly - try to go without alcohol in your system as you are far more likely to get the answers and treatment you need.
Good luck for the future, you know what you need to do, doing it will give you some life longevity. We don't know what the future holds for my hubby and he can't reverse the damage that's been done to him or stop it getting worse through reducing toxins etc. He's just got to live the best he can with what has happened to him.
I agree with AyreshireK - get to the hospital NOW!!!! My daughter who DOES NOT DRINK had all the above the same as AyreshireK husband, she was given 6-12 months to live!!!
You say your have children, think of them - do they want their mum to die, because quite frankly that is what will happen if you don't sort it out.
You are relying on a consultant to tell you, well from what I can see above real life people have told you. Sort it out woman!
I know this is harsh but you clearly need telling and beating about the bush is not helping you!!
You will be pleased to know that my daughter is doing very well and is on life long meds so there is a positive but only YOU can sort it.
• in reply to
P.s - our GP was beyond crap and did nothting either - they don't understand the Liver!!
I have no problem with people being blunt with me - I really appreciate it, actually.
I am emailing the BLT to see if I can get the name of the consultant I saw at the roadshow, and as I said, I have to be wine free tomorrow night as I need to drive on Monday and I never risk being over the drink drive limit, ever. I don't drive until at least 6pm usually, to ensure I'm not.
On Monday I have a full day's work away from the home-office (I work for myself) so Tuesday I can try to get another GP appointment and ask again.... as long as I don't get any last minute deadlines.
If I throw up blood again I will go to A and E - when I went to the emergency GP I took a packed hospital bag, (including my laptop for work, doh!) and arranged cover for the kids, so I had to delay going for 3 hours, but I did go...
To be honest, if I could just walk to the hospital and say 'here I am' to the consultant that would be perfect. I get frustrated with GP's and end up just not bothering as they never seem to listen. I suppose looking at this realistically, I need something drastic to happen to warrant using the time of A and E to get direct access to the people I need to see. If anyone has any better ideas I'd be happy to hear them though..
If you are passing blood and have black stools as you say, don't wait till you throw up blood again, that happens when you are loosing so much that your body can no longer process it through your digestive tract and the body needs rid. Waiting could cause you to be too late as Mumzymum has already said. Stay sober, get into A&E, tell them you are passing blood & have previously vomited blood, I would imagine you'd be admitted and will see either a gastroenterologist or heptologist on Monday. This isn't something to delay over.
Thank you - I'm taking everything on board and working out just what I can do. I'm alone with 5 kids, 2 of them are disabled and I have a company to run too. I have no help at all, no family support or friends (I had to leave the area the kids grew up in due to a violent partner, I rarely leave the house now and don't socilalise at all) so I have to find the money to pay for people to watch them if I'm not here.
I really can't not be here Monday, it's not an option, and I won't have enough cash to pay carers until Tuesday at the earliest. It's a treacherous balancing act, to be fair...
I was obese and hoped for Diabetes to make me give up sweet stuff - didn't work! If you can't give up the booze then I am afraid you will have to deal with the consequences! I already have Cirrhosis through surgical malpractice, so I kinda get a bit sensitive about those who can prevent the development of this disease!
TheBigF, you are a highly intelligent woman, I can only echo what Mumzymum said about your children. The way things stand, your children will soon have no-one to care for them. You know you are committing suicide in slow motion. Emergencies happen, work can wait, temporary care can be found, and will be if you bite the bullet and get to A & E. You actually sound very in control of your drinking, you also know that you are losing weight because you 're not eating. You are so aware of your intake, and more than aware of the damage that it has now caused. The Fibroscan does not lie. At the rate you are going, you have a very small window to actually arrest the process. You sound amazing, sure your children think you are too, so for God's sake get this sorted before it's just too late.
What motivated you to reduce your alcohol intake from 300 to 150 units? Start there. Why are you using a message board to present a riddle you cannot solve? Stop stopping and start starting!! X
TheBigF, I take on board your predicament re. balancing your child care, your business etc. etc. BUT if you delay seeking PROPER medical help you won't be around long for your kids. You do not need to pay for childcare, I know you've obviously had a rough time with violence and Social Work possibly is a scary word for you but my family are foster carers and its not just for when kids are getting taking away or bad parenting, the social work and fostering can step in to support you should you need to get inpatient medical care, your kids can be well taken care of whilst you are getting the necessary care you also need.
We are all rooting for you to take the necessary (and we know) scary step of getting to hospital but as we are all saying do not delay over this.
We can offer advice from either a patients or patients loved one point of view but we can't do it for you.
The hospital have social workers who can liaise with the local authority ones to get you the necessary help or your council will have an out of hours number for Social Work who can help you before Monday.
All the best, you're obviously a strong woman, come on you can do this!!
I suppose @nickprich because I am so isolated now I don't see another adult to speak to. I rarely leave the house, work from home on the internet, don't have friends or family anywhere near. I also have a telephone phobia, so am pretty much alone and trying to work out what to do for the best. I posted here as I was confuddled by the seemingly disparite results I had. I'm hoping I can track down the consultant I saw at the roadshow via this site, as he said he would be happy to work with me and thought we could achieve a good outcome. I reduced from 300 to 150 when I finally got away from my ex 5 years ago. He drinks as much as I do, so as a combination that was rather toxic, for both of us...
@harrogate sanctuary, yes, it is slow suicide, I fully understand that. I really can't not work, there's only me, if I lose my freelance work the whole family is without income. I have no guaranteed hours, so I have to keep to my deadlines, I can't let people down. We couldn't afford to live on benefits and I'm in debt up to my eyeballs since I split with my ex.
@Lizannison - I fully understand your viewpoint, and sympathise, though, my ability to 'control' this is actually not exactly the case, if it were a simple case of just not going shopping that would be easy, but it's far more complex than that, in reality.
I'll see if I can get hold of the guy via the hospital on Monday, though I don't know which days he works here, as he shares his time between here and a hospital 50 miles away. I will get this sorted, I just need to kick myself up the proverbial very hard....
'Hi'! It's Sarah from the British Liver Trust, and I just wanted to let you know that I've sent you a reply to your email...(not sure whether you will see that before coming onto here???).
Anyway.....after reading a lot of the above, I'm very concerned for you, due to your symptoms. Your GP needs to take note of these and to refer you immediately (as a matter of priority) to a Consultant. I've given you the names of the Consultants in my email.
In the meantime, please look after yourself as best as you can with your busy life, and if any of your symptoms become worse or if you feel there is any deterioration in your health, then do make sure that you seek medical help - and if necessary, taking yourself off to A&E.
Please feel free to contact me again and I would be more than happy to talk to you on the Helpine (0800 652 7330).
Well, I was packed off in an ambulance Saturday night having vomited blood again, went to casualty, was honest about alcohol consumption (well, I said 100 units a week, that's as far as I'll go verbally) and 2 decades of 1600mg of Ibuprofen a day for my physical problems, explained to everyone I saw about the fibroscan result, my history, losing weight despite not changing lifestyle and explained I needed to see a hepatologist... to EVERYONE... had lots of bloods done, was given IV glucose, (my BM was 2.2 mmol) and IV vitamins, they waited for my BP and pulse to slow down, then I was sent to emergency overnight ward, at 7am, I was up all blooming night!
Saw a doctor on ward about 8am, explained this is third time in past few weeks I've thrown up blood (it is a limited amount, about a mug full or so, but it is fresh) _ plus fact I can't eat, not had a thing since last Wednesday, they said I should come back next week sometime for an endoscopy (very vague on when, I have to wait for a letter) and that once I had eaten, I was to go home. Told them I couldn't eat, feel full all the time and only eat at night if I do, etc etc. Doc said 'do what you normally do', so I drank water till 11.30am, nurse came in and said if I didn't eat I'd have to go to the ward next door as an in-patient until I ate, then they'd discharge me home.. It's unlikely I will eat this week, sometimes I can go 10 days without anything, then I will have a piece of grilled steak or something, or lamb. I know it sounds potty, but that's all I need. I have glucose tablets on me to stabilise sugars and bought a BM monitor 6 months ago to make sure I have the right blood level to drive or go out to appointments - I'm very responsible, ironically.. I also take 600% strength B vitamins every day, (you can get them in a nail/hair remedy, far higher doses than normal vitamins)
Anyway, after giving me oral Thiamin they said 'eat or be transferred', so I took the third option and discharged myself and had to wait for an hour for a bus in the snow in paper thin clothes (I had no coat in ambulance, and I was still covered in monitor pads - I must have looked like an escapee!!) . They said I couldn't have any take home meds as I discharged myself, I said that was fine, (would only have been vitamins anyway by the looks of it)
I had to be here for work today, I'm way behind, plus my son needed to be taken to his new school, only accessible by car, it's so far away. He has ADD and this is his first mainstream school for a year, so I can't afford to disrupt this at all, and there's nobody else to get him there. His behaviour deteriorates if he's worried about me, so I've had to play it all down for everyone, as ever.
I'm just wondering whether I'm meant to go somewhere with a huge banner saying - 'hey, I've told you all what's going on, why are you ignoring me???' or maybe storm a liver ward?? (OK, the first I would do, not the second...)
I have just got your mail Sarah, thank you for replying to me. I really do appreciate it and will weigh up my options once I've cleared some of this work, I really needed to get 6 hours in yesterday, so I am way behind, which isn't helping my stress levels at all. I will mail you back if needed
Oh, and as I said, I was wine free last night and most of Saturday night, I did have some before I was sick, not a lot though. Which also means I've not smoked since Friday, as I only smoke when I drink, so that will keep doctors slightly more happy too, I suppose...
I am hoping to do a five night run of no alcohol, as if I do drink, I'l have to pay for a taxi to school and back on a morning as I won't drive, plus, I suspect I may be on my last chance saloon in the wine department, even I can see that. I'd love to say I've just given it up forever, but I'm not putting that pressure on myself - I have enough as it is..
I'll let you know if/when I get an endoscopy, can't pre-book my GP for 4 weeks, so bit jiggered in that respect.. By the time you get through on a morning the same day appointments have always gone, and the nurse can't refer me...
Hi BigF. Yours is a complex and longstanding problem that I dont think a forum can easily answer for you! On the one hand I hear you saying 'help me' to people here, hoping perhaps for new answers. On the other I read that although you seem to want professional help, in a way you reject it by coming up with reasons why you must discharge yourself from hospital when if you stayed you might have got to see a specialist and started on some road to treatment/help. Then I hear the excuses/reasons you give as to why you cant stay in hospital, your family, your job all the things/people that need you so urgently. If you dont get professional advice/treatment and continue on the same path, one day they will be without you anyway.
You're stuck between a rock and a hard place with this. Sooner or later there will be a health crisis that forces you into hospital without any safety net already in place at home re your kids, your job etc. Sometime soon someone else is going to have to step in and care for your kids if you need any sort of treatment for yourself as an inpatient. Wouldnt it be better to arrange that in advance yourself, plan it in advance, rather than wait for social services to have to step in in a crisis? Is there absolutely nobody else who can hold the fort while you attend hospital?
Stop the excuses as to why you cant do this, and start planning ways that you can.
Worked on and 75% sorted. I accept what;s going to happen, just 2 more kids to arrange x
Sorted money, travel to schools, food, uniforms....you name it.
If you read my post, hospital were discharging me anyway - I decided to cut it short.... no probs...what was the point of sitting in a bed when all they wanted was the one thing I couldn't do? Someone else could seriously need that bed...
"If you read my post, hospital were discharging me anyway" - I did read your post and you wrote that the hospital gave you an option to be transferred to another ward, which could have given you the chance to ask again for more specialist investigation/referral while they were waiting for you to eat. As you say you dont eat anyway for days, you could, in theory, have put that into practice into hospital to keep yourself in. You discharged yourself, you said, - the hospital didnt discharge you.
I appreciate you hadnt got care in place at home and it would have been difficult to stay in, however when someone with liver disease starts vomiting blood it suggests you may have gastric antral vascular ectasia (GAVE) where the lining of the stomach is damaged. Or it could be you have varices in your oesophagus which have bled, a symptom of advanced cirrhosis.
Hassle the hospital/your GP for the appointment for an endoscopy, as this will either diagnose or rule out both varices and GAVE.
Re the dad of your kids who is, at some as yet unspecified possible date in the future when you might need his time - "too busy" .... when I had surgery I didnt know how long I might be in intensive care, and I didnt have family nearby. So I asked my son which of his friends he would like to have on standby in case he needed to sleep over somewhere. He chose who he wanted to look after him, instead of me choosing for him, and the mum in question although not a close friend of mine, more an acqaintance, was happy to oblige. Son was 16 at the time. Of course you may not want to be open with non-family members as to why you might need extra help at some time. on the other hand, you could just say you might need to go into hospital for a 'procedure' and said in a particular way hopefully people wont be too nosey for details!
I have some people working very hard to get me seen by a liver specialist now Bolly, they've been very amazing.
I have an endoscopy booked for next week (the day before we're due to give evidence in Crown Court, sigh, you really couldn't make my life up if you tried) and am getting bank details of people so I can do transfers, as long as I have internet, if not here. That way kids fares to school and college plus food covered (bus/train is £100 cash a week) and I can still work, as long as I'm online.
I'm sure this will all come together very quickly, as I said, there was no point sitting around twiddling my thumbs waiting to suddenly have an urge to eat. As it was, I had half a samosa about 11pm last night, so that's done now. Not one person in hospital wrote down my scan results or noted my concerns in any way, shape or form, so I didn't see the point staying, plus, I really did have to be here Monday morning, that was crucially important. I'll keep you posted as to how my trips to the gulag go (our local hospital is straight out of communist Russia!)
Well - apart from a hiatus hernia my insides seem pretty happy, so no bulging blood vessels, quite where the blood I vomit comes from is something of a mystery as of yet.
Gastroscopy was horrible, had sedation but gagged and retched all the way through, and was sick all over my clothes as soon as camera removed. How incredibly glamorous... slept most of day, so had to work last night, still having liver pain and abdominal spasms. Also was told I've lost another 6 lbs in weight since I was in casualty. Court date re-scheduled so that's a relief.
Still no appointment from the liver consultants, but am positive it should arrive soon.
Hi Big F I won't give you a lecture about drinking except you know it does you no good but, more importantly I have a long story to tell but suffice it to say I have a Fibroscan result of 7.5 which I understand is good, my LFT has been nothing but normal for forty years. I have confirmed liver disease and have just had a liver operation. I am not trying to worry you but your GP knows nothing. He should be sending you to a Gastroenterologist and Heptologist for tests. I also have good blood results. My advice is insist on seeing a Consultant NOW! Best wishes.
I was diagnosed with chronic liver disease in 2007 and have been abstinent for seven years now with the help of aa. Just got a letter last week which says " when I see him next I will book him in for a fibroscan as he may well have had a significant resolution of the fibrosis in his liver although generally we would not consider that cirrhosis is reversible" my consultant see many people who die through not
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High GGT (309), normal ultrasound and fibroscan (3.2kPa), other liver functions normal. Any ideas?
Abnormal Liver Function
Fibroscan
liver biopsy and fibroscan have differant grades of my liver. What is the truth ?
