Could I already be beyond help with my... - British Liver Trust

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Could I already be beyond help with my liver problems?

Kellan38 profile image
61 Replies

For quite a while now I have felt an intermittent, but very real soreness around my liver, which sometimes goes right through into my back (right side) and sometimes sits around my abdomen and tummy on the right hand side of my body. I felt this or a fairly long period at the back end of last year and into this, and from around the middle of November to the present time, and I am very, very worried!

I am now only an intermittent drinker after being a very regular drinker throughout my adult life. I am 59, and I cut down for this very reason of being worried about my health, although I estimate I still have around 8-10 bottles of beer every week.

My worry levels were such that when I went through a spell of these ‘twinges’ during the Summer, I went to see my GP, and he sent me for a round of five or six liver function blood tests, which all returned excellent results, with my GP trying to assure me there was “nothing sinister”, as he liked to put it, going on. He told me that for a man my age the blood results could hardly have been any better, with several of what he called ‘perfect readings’ at the time.

Very. very sadly, these encouragements and assurances failed to ease my worries, and I am now locked into a battle with my emotions as I have now virtually convinced myself that I either have severe alcoholic liver disease, liver cancer or even both!

I have none of the other symptoms that are often cited as being confirmations of liver damage or liver cancer or cirrhosis (these being such things as reddening palms, yellowing of the skin and eyes, blood in my stools and urine or nausea and loss of appetite (I learned these from websites I’ve frequented) although I do have itchy legs and ankles in the morning at certain times. This condition, however, is one that I've had on and off for several years now, and it's a condition I've just come to see as symptom of my stress at these problems as well as all the other problems of life.

A couple of months ago I went back to the doctors with these same symptoms, and was given a basic health check and then sent for so ultrasound tests on my liver, kidneys and stomach as well as a full range of blood tests including extensive liver function tests. All the blood tests were reported as being 'normal' although I was told that my scan results had been returned as 'abnormal' and was thus called back to see my GP. This caused me enormous fear until I eventually went back to see my GP, but when I attended the appointment I was told that the scan results were fine, although they'd detected some 'liver chains' which were, uthey said, of no concern whatsoever, and so no further action was needed. My GP said she was happy with this although she said she'd like me to really cut down on my drinking, and said I really neede to get a bit of weight off to try to further improve my general health - I'm 5' 8" and a pretty flabby 14st 8lbs at last 'weigh-in'.

Just as a final update and a further twist, I started to have pains again last week, and was planning to go back and see my doctor, but was astonished to receive another phone call from her at work last Friday to say that she'd had another word with the Radiologist, and they'd said they thought I should now have a CT scan 'just to make absolutely sure' that things were in fact OK. I am now extremely frightened by this development, and am fearing that I might have liver cancer or at least cirrhosis of the liver, and that they somehow missed this before, but have seen something on a second look that has caused them to call me back.

From the information given here, could anyone start to hazard a guess as to what might be wrong with me, and could I already be beyond help?

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Kellan38
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61 Replies
Purpletop profile image
Purpletop

A serious condition such as liver cancer or severe liver disease would manifest itself with either significant symptoms or abnormal tests or scans. As far as I understand it from your post, you don't have any of these although you have some abdominal discomfort in the upper right abdomen. So on that basis, I can see why your GP isn't concerned but still wants to reassure you by getting all tests done for good measure.

Have they checked your gallbladder? Sometimes gallbladder dysfunction gives the same pain you're describing. Try not to get sucked into a world of worry until you have firm evidence that there is something to worry about. Not only because worrying in this way is destructive but also because IF there is something abnormal, you need your energy to deal with it, energy that you're spending now worrying.

There are many things that could go wrong with our bodies but not all are catastrophic, so it may be something benign that can be resolved with treatment, who knows?

Hi There

Based on the fact that your liver function tests are normal and you have no symptoms of liver disease other than discomfort in the right side, I would try not to worry too much about there being issues with your liver. The liver has no nerve endings and so you cannot feel it when its sore, when the liver is inflamed it stretches the muscles and tissue around it, this is where the pain comes from in people with liver disease, however, if your liver function tests are normal i can only assume that your liver is not inflamed.

Another point is that kidney pain can be confused for liver pain, so i wouldnt jump to the conclusion that there is something severely wrong with your liver, it could be that it is maybe a kidney infection, dehydration can cause serious kidney pain too.

I hope everything works out in the scan. But try not to jump to conclusions and worry yourself too much until then.

Good Luck.

Kellan38 profile image
Kellan38

Thank you so much, Poppy and Purpletop...This is an excellent forum, isn't it? It's quite the best I've seen on these subjects.

I'll be back when I've seen the doctor tomorrow, but please don't let that deter anyone else who might have something to say on this...

Kind regards

Graham

I would endorse the responses from Poppy and Purpletop and encourage you to be as positive as you can be in advance of your scan. I think, however, that there would be some real merit in addressing your drinking. You write of 8-10 bottles of beer per week being a reduction in your intake. You may still be drinking above the recommended limits and that clearly has had an impact on your weight. Shifting some of your emotional energy into stopping drinking and losing weight may ease some of the anxiety about your test results and you will benefit in so many other ways. Best of luck and keep us informed of progress. Mike

carmik profile image
carmik

Hi

What did you doctor mean by "chains" in your liver

Alpha 1 antitrypsin deficiency forms "chains " in the liver which cannot get out hence it causes liver disease and because these "chains" can be due to malformed Antitrypsin, which is supposed to find it's way to the lungs ,also lung causes disease.

Don't take this as being your problem, but I will point out the following, contrary to other comments.My husband had problems but in the early days Liver Function was showing reasonable even though they eventually found some cirrhosis. Over the years he had regular blood tests for Alpha Feoto Protein which is the marker for liver cancer. Showed negative., Regular sans showed nothing more than the cirrhosis. Eventually he had other issues and was put on the transplant list. When they removed his liver he had OVER 10 TUMOURS which had not shown up. I therefore am very sceptacle at results that come back as negative when the patient still has symptoms. As I said this need not necessaril;y be your case but if you feel something is wrong, KEEP :PUSHING

Good Luck

Kellan38 profile image
Kellan38 in reply tocarmik

I have to say I'm quite shocked by this, Carmik. This virtually means we can have no assurance still at all in any situation. I'm very worried now, and can only hope for the best from here on in...

liveronmymind profile image
liveronmymind in reply tocarmik

I wish that my husbands tumours had never shown up then he could have has a transplant....... Oh well, sorry to barge in on this old post!

Hope your husband is now recovered and fit and fine

Ph1ldad profile image
Ph1ldad

Sounds like you're in good hands and the medics are responding rapidly. From the description of your condition and the test results you've got, I wouldn't be too concerned as long as the docs carry on monitoring. Liver disease is often called a silent killer because you rarely get any symptoms until the liver is noticeably damaged. I've had cirrhosis for over 15 years and never suffered with any pain other than a dull ache now and then. I know it doesn't help to say "don't worry" but you shouldn't. Try taking control of your own health; give up drinking, adopt a balanced diet and take excercise. Good luck Phil

Kellan38 profile image
Kellan38

Thank you again for everyone who has replied to me so far. I'll post again after my visit to the doctor's this evening...

carmik profile image
carmik

Please take note and ask what the "chains "are.

It could be relevant.

God Luck

Kellan38 profile image
Kellan38 in reply tocarmik

Hello Carmik...The doctor just said they thought it was a 'fatty chain' and that it was 3cm long. I suppose I should have asked her to be more precise, really. I'm sorry.

ancientadolescent profile image
ancientadolescent

What do you mean by being beyond help. If you have liver failure for whatever reason,there is always a transplant you can be given. However you should stop drinking anyway as you are unlikely to receive one if you are taking alcohol. A safe level of alcohol varies with the individual and it is at least one way forward with your predicament.

Kellan38 profile image
Kellan38

To all:

I went back to see my doctor today, and we discussed the reason why she'd taken the decision to send me for another scan.

The doctor said she'd had the full report back from the radiology department, and they'd said the abnormal factor in my my scan had been, as I reported before, a 3cm long fatty chain which, whilst they were almost certain was benign, couldn't say that for sure without further confirmation in the shape of another scan - and this time a more detailed one, which was the reason for the CT.

My doctor, too, said she thought the overwhelming likelihood was that it would still come back as being benign, but because she was a doctor who always erred on the side of caution, she felt she had to ask me to have another scan.

Whilst I don't want to sound like a whinger or a self defeating pessimist, I am up against the huge problem of being a person who has always feared the worst in every situation, and I am still terrified - and even more so now - that this will not end well and that there could well be some dreadful news in ten next few weeks. I've been in the process of vastly improving my diet over the past two or three weeks, and am buying far more fruit and veg - as much organic as possible - and am also having good quality vitamins and minerals and Omega 6 capsules as well as Dandelion Root Extract. I have also taken the decision to complete stop drinking alcohol, and will try to increase my intake of water over other types of drinks like Diet Coke and other 'pops'.

I hope this gives you all as full an update as possible. I am still experiencing quite acute discomfort and a feeling akin to inflammation around my liver and in my back, and it is this that is frightening me more than anything as this must clearly be 'something' and the worrying severity of this over the past three days - incidentally, ever since the doctor rang! - is making me fear the worst.

I value all you help and concern, and I will stay around this Forum and make it my main port of call in these matter. I do so hope people will continue to help me, and to help me find a way of coping with these fears. I would then like to be of similar help to others if I ever come through this in one piece...

briccolone profile image
briccolone in reply toKellan38

hi Graham,

I wont comment on the GP feedback because I'm not qualified but we're the same age and similar symptoms and you're in a place I was a year or so back-I was ina pretty dark place for a while after googling symptoms....take a look at my posts about GGT-my advice is to stop beating yourself up about what may have happened in the past-it's done-lets move on. Some of your symptoms could be early stage fatty liver which doesn't show in ultrasounds-stopping the alcohol may have benefits after a week or so-use this site for support-there's loads of good advice from people who I can assure you have been through much worse. cheers

Kellan38 profile image
Kellan38

Many, many thanks for this, briccolone

I am so grateful for your comments, and coming as they did, just as I was about to go to bed, means that I can rest with a bit more hope in my heart, so thank you very, very much again...

Kind regards

Graham

briccolone profile image
briccolone in reply toKellan38

you're more than welcome-that's the reason for this forum..btw I shared a lot of your symptoms, itching on ankles etc-take these as early warning signs and act accordingly. I found nearly all symptoms disappeared after a few months abstinence and I'd been drinking for 30years plus-so I consider myself fortunate-if you back to binge drinking the symptoms will undoubtedly return probably with a vengeance-take it from me. keep us posted as all experiences are useful for others

carmik profile image
carmik

Hi

I know it is hard but until you have definitive answer try not to look on the black side. High GGT does not mean you are past help. Mike had his transplant and nearly a year later his GGT rose to nearly 1000. Easily corrected over the next year as where the new liver had been connected to the bile duct there were two strictures due to post op scarring. That has now been cured. GT normal. By the way he doesn't drink alcohol and the first signs of him having a health problem was a very raised GGT level. Took 6 months to pin it down to the liver. It can be related to other health issues.Good Luck and keep in touch

Kellan38 profile image
Kellan38 in reply tocarmik

Thank you for this, Carmik. I will....

Bolly profile image
Bolly

I'm assuming what the report means by a 'fatty chain' is an area of fat deposit in the liver that can, on an ultrasound, look like what they call a pseudo-lesion. The CT scan will be clearer than the ultrasound and will hopefully clarify what this 'chain' (I've had loads of scans and biopsies and never had the word 'chain' in any of them!) is.

Kellan38 profile image
Kellan38

Thank you again to all for your replies, and for taking the time to try to help me.

I have a question this evening about the pains and discomfort I'm currently experiencing, and wondered whether this might be due to me starting to cut out alcohol ie could they be some kind of alcohol withdrawal symptoms? I find that If I have a drink I have no soreness or discomfort the following day, although the burning sensations and the feelings of inflammation almost always start after breakfast the day after that. It seems to me we have very few symptoms as long as we're drinking, but can experience some pretty nasty and very frightening and worrying feelings once we give the booze a miss for a little while.l

I've also noticed that I sometimes have quite painful feelings of discomfort when I drink hot tea or some other liquid, and I feel as though I need to keep drinking cold or fizzy liquids in order to ease the symptoms of inflammation in my insides.

I've found health salts and other bicarbonate of soda powders to be very helpful in that they ease the symptoms for mr for a while, and have even resorted to taking two or three paracetamol to try to generally numb the feelings around my liver and in my stomach. I'm fully prepared to stop drinking completely if I can somehow save my life back from this very worrying present condition, and will honestly now try anything I can to try to win a few years more, but I wonder how long it might take before all this discomfort subsides.

Could anyone advise on all this, please? You've all been absolutely wonderful so far, and this is easily the best health forum and website that I've ever managed to find.

Many thanks, as ever, for any further help forthcoming...

Graham

briccolone profile image
briccolone in reply toKellan38

what you have is exactly what I've got and is fatty liver! you may also be suffering from PAWS if you have stopped drinking suddenly-the effects can be unpleasant but not long lasting -I've done a post on this also-just search PAWS

Kellan38 profile image
Kellan38

Briccolone and all

The thing I'm unable to understand is how how some days are pain free whilst the next – like today – can be one in which I’m experiencing quite sharp, extensive pain. I complete my first week without alcohol today, and haven’t had any problems in trying to leave it alone – indeed, my fears have been such that I’ve felt no other option than to completely abstain – but I’m beginning to get really worried now.

Other than this Forum, the only form of encouragement I have is that I had similar feelings to this over the space of several months last year, and yet I had months of being pain free after that, but these latest ‘attacks’ have been around now for several months, and in my darkest moments I’m beginning to feel a bit like a dead man walking…Does anyone else have this on/off pattern of pain, or has anyone else experienced it in the past? I think I noticed somewhere else on the Forum that several people have, and I'd be really interested to discover for sure that I'm not the only one who's been through these weird and bewildering bouts of pain and discomfort...

Purpletop profile image
Purpletop in reply toKellan38

Try not to panic - why the catastrophe thinking? There may just be a simple explanation. Go back to your GP and ask her about your concerns, she seems very sensible. The only things she could do for you is to either send you for more tests, or refer you to a hepatologist, or both. Is this what you want? Will this give you at least the comfort that you've done everything you could to get to an answer?

briccolone profile image
briccolone in reply toKellan38

mate what you're going through sounds pretty normal to me or at least my experience-you need to give your body a while to get used to not getting the alcohol/sugar kick it was getting. Everybody reacts slightly differently to abstinence-expect some strange stuff to be going on for a while but stick with it-your tests so far sound way off the panic button to me

steve4 profile image
steve4

hi i have liver cirrhosis,redding on palms c my consultant twice yearly and only have 20% function .

sounds to me that ur doc is checking for fattey liver not cancer ,try not to worry as u said ur test are almost norm ,

try to control ur wieght and diet cut down on sugar and salt and beer try to stop if u can i didnt hence my condtion and try to do a bit more excersise and dont think the worse all the best

Kellan38 profile image
Kellan38

Hello Briccolone

Thank you for saying what you did. It arrived in my inbox after a really bad night of worries and seemingly worsening symptoms, so I was very, very grateful for your help. I now moved from a longish period of anxious worry into one of almost numbed despair. The overriding problem now is that I'm failing to believe that such chronic and uncomfortable symptoms can possibly be benign, and anything other than an indication that something serious is going on. I've always thought the very worst of any situation involving me ie I'm a person who is naturally pessimistic and always thinks the worst is going to happen, so this whole scenario and problem is hugely worsened by that fact.

I'm going to be out for most of the day on Sunday, but I'll be back here in the evening to see if anyone else has had the time or chance to comment. Are you in the UK, briccolone? I'm in Yorkshire, near Leeds.

briccolone profile image
briccolone

hi there yep I'm in the london area.I can assure you that there is light at the end of the tunnel-the longer you keep away from alcohol the better your liver will like it. I can't believe you have a serious liver issue based on your symptoms. It may take a while though for the "symptoms" to subside-it took me months. You need to take onboard what the docs are saying and take some solace from it. And do something, diet, exercise-something to take your mind off it!

ancientadolescent profile image
ancientadolescent

No one is ever beyond help. Try to be patient and wait for the results of your ct scan, if this and your blood test are satisfactory,then it is very unlikely that liver failure is a cause. Your way forward then, would be pursuing other possible causes for your symptoms, digestion could possibly be one.

Kellan38 profile image
Kellan38 in reply toancientadolescent

Thank you for you reply, ancient adolescent,

The line about a possible digestion problem was very timely, really, in that this is something I've been wondering myself in the past few days. The first reason was that hot drinks and certain foods greatly increase my discomfort, and stress, also, makes it much, much worse. I've even been able to partly reduce the severity of the soreness on quite a few occasions now by simply relaxing and almost choosing to feel 'well' instead of feeling very uncomfortable and sore and frightened.

Does any have anything further to add to this discussion now that we might be wandering down a possible new track?

Kellan38 profile image
Kellan38

All

I've a feeling I saw another reply today, but I think I've somehow deleted it. If this is the case, could the person who sent it please resend?

Really sorry about this, but I'd be really grateful if you could do that...

Many thanks, and 'hello again' to all...

Graham

lorriehw profile image
lorriehw in reply toKellan38

It was me I think. I deleted it because it was your thread and not about me. I just joined here- sorry. I posted it as my own question, but no one has answered. Here's what I wrote. If you want to delete it off your thread I understand thanks Graham x

Hello all, my name is Lorraine and I have just been told by my doctor I have Chronic Liver Disease and am scared what that means to me :)

I had sever pain in right side 15 months ago and was admitted to hospital for a four day stay due to them thinking it was gallstones. An ultrasound was done, but no one seems to know the results of that now or be able to find it!

Then just over a month ago, the same severe pain came back and couldn't breath in, touch my side - nothing. An ultrasound was arranged which I had this week. It showed extensive fatty liver (sonographer's words), but then when the doctor looked at the results he said something about 'diffuse' and said I had Chronic Liver Disease (CLD), (which I gather is a later stage of fatty liver) and he was referring me to a gastroenterologist.

I always had a relatively good diet anyway, but since hysterectomy 4 years ago, I felt positive something was not right and kept saying I thought I had Candida through my system. I had put on 5 stone in weight quite quickly (not a bit normal) my stomach is very swollen in an abnormal way, my feet swell badly from time to time and I am completely exhausted some days for no reason. Slight lightheadedness comes and goes, dark urine (now gone) and strange taste in mouth every now and again in last few weeks. I even had strange body smells once or twice that no amount of showering would stop.

All these symptoms were ignored and put down to being overweight. I'm sure they thought I was a hypochondriac. They all ignored my concerns, saying there is no such thing as Candida in the system. It has been proven there is and if left it can result in liver disease, which is where I am today. On speaking to me again the other day, the doctor was surprised to hear I still had pain in the side, yet still hasn't seen me to talk things over or say how bad or not the ultrasound is.

Blood tests results show liver function ok, but inflammation of the liver. I am scared as no one is talking to me and someone just said if I am already being classed as having Chronic Liver Disease, it has gone beyond ordinary fibrosis and I have basically had it!

I am trying to remain positive, but can't understand why the pain won't leave totally and symptoms are all still there. Why is no one talking to me to explain and say just how bad or not too bad the ultrasound looked? Anyone been in the same position and do you know if this is it, or can any damage at this stage be halted and reversed?

I am not a real drinker either. Maybe 2 glasses once every few months. Thanks all. Good to know there are others out there willing to help and share x

Kellan38 profile image
Kellan38 in reply tolorriehw

Hello Lorrie

I've been away this weekend, and have only just got time to reply to you, although I can see that others have also replied to you in your other post.

There's absolutely no need to apologise to me at all for post 'on my post', as it were. In fact, I'm glad you did because it meant I got to know you a little quicker than I might perhaps have otherwise done.

I'll be reading the advice that others have been giving you, but please do know that you'll find friends and good advice on here way beyond what you might find in other places and on other message boards. Come to think of it, I think you've already found that from your replies to several people, but please don't give in to despair, and just be glad that you happened to chance across these wonderful people.

I, too, am in a similar position to you, and I've had an especially bad and worrying weekend with a very worrying worsening of my symptoms. I'd had a god week prior to that, but then had a few pints on Friday - after stupidly thinking I was 'OK' to do so - and have suffered pretty badly as a result. I feel really stupid and pretty guilty about this, but I'm a man with normal human weaknesses, and I thought I was OK when I clearly wasn't.

Let's stay in touch on here, as I'm sue we will, and let's hope that we can all come through our problems and find happier, healthier lives without these awful problems and horrible fears.

With kind regards, and every good wish for your recovery

Graham

lorriehw profile image
lorriehw in reply toKellan38

Thanks so much Graham. I feel as scared as you do at the moment and while I try to remain positive, I am scared what they'll find and tell me. I already know from being on here that 'diffuse' means through the liver. That sounds so bad doesn't it? Not just a bit affected, but the whole thing by the sounds of it. But what is it and how bad is the big question. I still have the niggling pain dulled now from the bad and severe pain from 4 weeks ago. That lasted for two weeks and I am hardly eating anything at the moment as too scared to eat most things in case it makes things worse.

I am just stunned I had an ultrasound for this same pain 15 months ago and no one said a thing and just sent me home. The wait for a specialist will be weeks on end ad I'm not sure if I can bear waiting that long to know exactly how bad things are and what's to be done - IF anything can be done. I just want to know what I'm dealing with, so not sure what to do. Do I pester my doctor or not? He hasn't even said anything to me except I have Chromic Liver Disease and he expects me to accept that with nothing else said. Why do they tell us nothing? I am delighted to have found such support and help on here and am so grateful to you all. For now I am in limbo knowing I have something bad going on in my liver, but not what exactly or how bad.

Thanks so much for saying hello and yes, love to keep in touch and see how we all get on with this darned thing that's scary and unknown. xx

PS I have stretched my palms out and the whole of the outside of my palms are red, but the centre pale. I take it from what I've read on here this isn't a good sign?

Kellan38 profile image
Kellan38 in reply tolorriehw

Hello again, Lorraine

Really lovely to hear from you, and thank you for taking the time amongst all your worries to reply to me.

I'm not sure about reddening of the palms - this us all still pretty new to me, too - but I'm sure that many other members will read that, and at least a couple will be prepared to help with a bit of advice.

As I said before; We're all in this together, and we're lucky to have this wonderful website!

Regards again...x

Graham

briccolone profile image
briccolone in reply toKellan38

what's your latest feedback?

Kellan38 profile image
Kellan38 in reply tobriccolone

Hello again, briccolone

Many thanks for asking after me, and for keeping in touch on here as you do. I was going to post something today, and your latest message has prompted me to do that straight away on my coming home from a few days away.

Well, in truth, not a lot has changed. I still have 'quietish' spells - sometimes several days - when it seems like the symptoms have all but disappeared, and then they just come back again and feelings of 'inflammation' and general discomfort just steam in as bad as over - and sometimes what seems like even worse.

Up to the weekend before this, I'd had a really good week, and was even thinking it was safe to have a couple of pints on the Friday evening, but although I gelt totally fine whilst I was out, then four pints that I had (a couple of pints more than I'd usually have) just proved a bridge too far for me again, and another week of discomfort (albeit for a couple of 'quieter' days) has been the sad result.

Today is my tenth consecutive day without a drink, and although I've felt the 'twinges' (as I've come now to call them), they've been ever so slightly calmer than of late, although I wonder how long it might be before a lasting improvement is won.

I've been slightly alarmed this week by the return of the itchy legs and ankles (mainly the latter) that I've had now for around a year, and am worried that this doesn't seem to be clearing. However, I know that being overweight (which I most certainly am) can't be helping me, so I've kept very active over Easter, with a couple of long walks, a couple of early morning jogs, and a morning spent on gardening earlier today. I'm hoping all of this might be a contribution toward so a possible recovery, although sometime I do believe that my decline is now irreversible, and that's when my joy in life is almost home, and I inevitably yearn for the 'comfort' of a beer again.

One other thing before I go: I've still not heard back from the hospital with a CT scan appointment date, but I work in the NHS myself, and I know how long these can take. A very big part of me doesn't want to face this anyway, but I know that I really have to even if I'm terrified of what it might reveal.

As I said, I'd already decided that I'd post on here again today, but thank you again for getting in touch, and asking after me. I've still not been able to find the section you penned on PAWS, but I'll be having another look for it tonight.

Finally, I hope the girl who wrote to us all on here last weekend is OK ( was her name 'Lorraine'? I'll be trying to sound her out again this evening when I have more time, but In any case I send out my regards to everyone who has contacted me thus far...

Kellan38 profile image
Kellan38

Just a further quick update on things: On checking the weekend post on my return from a few days away, I found I'd finally received a letter about the CT scan the doctor asked me to have. The appointment is next Tuesday, the 29th of April, and it's for CT Abdomen with contrast, CT Liver with contrast and CT Pelvis with contrast. I've not got much idea what these terms mean, and would be grateful if anyone could explain. And what, especially, does CT Pelvis mean? Could that be a new search for bowel cancer? I'm very anxious, anyway, about these tests, but the request for a 'CT Pelvis' is worrying me even more...

Kellan38 profile image
Kellan38

Hello again, briccolone...and all

Many thanks for asking after me, and for keeping in touch on here as you do. I was going to post something today, and your latest message has prompted me to do that straight away on my coming home from a few days away.

Well, in truth, not a lot has changed. I still have 'quietish' spells - sometimes several days - when it seems like the symptoms have all but disappeared, and then they just come back again and feelings of 'inflammation' and general discomfort just steam in as bad as over - and sometimes what seems like even worse.

Up to the weekend before this, I'd had a really good week, and was even thinking it was safe to have a couple of pints on the Friday evening, but although I gelt totally fine whilst I was out, then four pints that I had (a couple of pints more than I'd usually have) just proved a bridge too far for me again, and another week of discomfort (albeit for a couple of 'quieter' days) has been the sad result.

Today is my tenth consecutive day without a drink, and although I've felt the 'twinges' (as I've come now to call them), they've been ever so slightly calmer than of late, although I wonder how long it might be before a lasting improvement is won.

I've been slightly alarmed this week by the return of the itchy legs and ankles (mainly the latter) that I've had now for around a year, and am worried that this doesn't seem to be clearing. However, I know that being overweight (which I most certainly am) can't be helping me, so I've kept very active over Easter, with a couple of long walks, a couple of early morning jogs, and a morning spent on gardening earlier today. I'm hoping all of this might be a contribution toward so a possible recovery, although sometime I do believe that my decline is now irreversible, and that's when my joy in life is almost home, and I inevitably yearn for the 'comfort' of a beer again.

One other thing before I go: I've still not heard back from the hospital with a CT scan appointment date, but I work in the NHS myself, and I know how long these can take. A very big part of me doesn't want to face this anyway, but I know that I really have to even if I'm terrified of what it might reveal.

As I said, I'd already decided that I'd post on here again today, but thank you again for getting in touch, and asking after me. I've still not been able to find the section you penned on PAWS, but I'll be having another look for it tonight.

Finally, I hope the girl who wrote to us all on here last weekend is OK ( was her name 'Lorraine'? I'll be trying to sound her out again this evening when I have more time, but In any case I send out my regards to everyone who has contacted me thus far...

PeterP54 profile image
PeterP54

I think I would look at the appointment for a CT scan positively. It appears your blood tests are fine and so is an ultrasound. A CT scan will give a better image than the ultrasound and should lay any remaining doubts in your mind to rest. If the CT scan does show anything untoward, take comfort that anything it finds is probably at an early stage and eminently treatable.

The CT scan, as you are probably aware is not invasive apart from needing an injection of contrast dye and does not take long either.

Good luck

Kellan38 profile image
Kellan38

I went for my CT scan today, and as nervous as I was of the results - and the procedure - I suppose I'm glad that it's been done, if only for the fact that it might prove to be a source of some assurance if I'm still found to be free from serious threats to my very existence! It really does feel to me that the stakes are as high as that.

One thing that continues to worry me in all this is the fact that no matter what investigations I might have done, there always seems to another needed that threatens my peace of mind. In the first place it was a physical check up after which the Doctor pronounced me OK. Then - with the symptoms still continuing - I was sent for a round of blood tests which included all the liver function checks etc. Then, when these were all OK, it was the progression to Ultrasound - at which I thought I'd start to 'rest assured' if I could only come through that - and then finally, when still no explanation could be found for my discomfort and continuing pains, it was off today for a CT scan. One thing I was pleased about with that was that it was only today that I knew that I might have to have a canula fitted (which I'd have dreaded if I'd know before), but as relatively uncomfortable as it was for a few seconds, it really wasn't too bad at all.

Right now, because of the continuing discomfort and mild pain, I'm trying to console myself with the thought that these might possibly be what Briccolone describes as PAWS. He seemed pretty confident that these are what my pain and all my other twinges were down to, so I'm hoping they might subside soon, as he assured me they would. Incidentally, has anyone hear from Briccolone just lately? I haven't seen him around on here now for the best part of two weeks, and I really hope he's OK and maybe just on holiday or something else like that.

Graham

sunflower1 profile image
sunflower1

Hi Graham.. just been (quickly) reading your post with interest.. Not sure if I have responded to you previously. I have very similar symptoms as you although I have more issues than you have I think.. Itchy skin, liver pain, Pins and needles. Red patches on palms. latest is painful feet etc etc etc etc.. all my tests have come back negative which have been LFTs, Ultrasound and Fibroscan.. 6.3. Not been referred for a CT scan. How long do you have to wait for the results. Wishing you well.

Kellan38 profile image
Kellan38 in reply tosunflower1

Hello Sunflower, and thank you for replying...

The hospital staff told me that the results are usually turned around in 7-10 days, but I know from my own experiences from work (I work with a Community Mental Health Team) that they can often take much longer than that. Whether they get back quicker for a GP, I'm really not sure, but I can only go on ours, and they can sometimes take several weeks - these, mind you, being CT head scans, not liver or abdomen scans as was the case with me.

Thank you, also, for your good wishes, and they were really timely sentiments to send me today as I had the worst day of all the months I've carried these worries whilst I was at work, and things have not got all that much better since I came home. I think I just allowed my fears and worries and various imaginations get the better of me throughout, and I've been really low in spirits almost since waking this morning.

I'm really not sure where I'll find my next feelings of hope and encouragement, but I've no option but to keep on trying to find 'something' to get me through each passing day.

Thank you again for getting in though, and I hope to hear back from you soon.

Regards

Graham

Kellan38 profile image
Kellan38

Hello again, all

Just another quick update on how things are going...

It's now Friday morning as I write this, and I had a CT scan a week and a half ago on the Tuesday before last. I've still not had any results back, so I'm hoping that might suggest that they haven't found anything too alarming or they might have called me back immediately. As regards all the previously reported symptoms; These have reduced somewhat this week, and I've tried to push them out of my mind and just get on with the week. I've tried, too, to improve my diet further, and have bought in lots of good frozen veg and a further selection of dried pulses. Instead of sandwiches for work I'm taking wholewheat pasta with (usually) a generous helping of sweetcorn and other veg, and I'm also taking plenty of nice fresh fruit. Perhaps more importantly, I've only had two bottles of beer in the past couple of weeks, and didn't even finish those such was my caution over having them.

So all in all, then, there's been a relative 'calm' about the last week or so, but I'm just hoping it's not a false new dawn before a possible 'bombshell' in the form of the test results from my Doctor. Assuming there's no further news today - and I've been living in fear of every possible call on my mobile phone, and scan the post with trepidation when I get home at night after work - I'm planning a quiet weekend with my girlfriend, but will be checking in here on a regular basis to follow any possible replies and any news updates from our fellow contributors on their own ongoing conditions.

Have a happy day all, then, until we chat again.

Kellan38 profile image
Kellan38

Hello again, all

I just thought I'd update you all again on some latest 'news' of sorts with regard to my recent CT scan.

I received a letter from my GP surgery today asking if I'd get in touch with them to either book an appointment to see a GP' or to attend one of their 'walk in' surgeries ie those where you just turn up on spec and see whichever GP is available. The letter just said it was about the scan, and just asked me if I'd call in 'to discuss'.

From the apparent lack of urgency over this, I'm hoping they won't be hitting me with any bad news when I go there. I was wondering if I'd be right in thinking that this particular approach on the surgeries behalf, coupled with the fact that it wasn't specifically asking me to see the GP who referred me, could mean that there's no urgent matter at hand that they wish to discuss with me. Would anyone read anything into the phrasing of their letter, and the manner of their callback?

Hi Graham

I hope it's good news for you. Xx

sunflower1 profile image
sunflower1

Hi Graham, have been wondering about you of late and wondered what your latest was. Going by my docs I woud assume there is nothing to worry about as they would have called you, not written a letter if it was urgent. Thats just going on the experience I have with my docs. When will you be able to get to docs? soon I hope. All sounds fine to me. Fingers crossed.

Kellan38 profile image
Kellan38

Hello Cloggs, and hello Sunflower

Many thanks for your interest and your replies...

I'll try it get to the surgery as soon as I possibly can, and I'll post the outcome on here that same evening...

Just hoping everything's OK...

Graham...

Kellan38 profile image
Kellan38

Hello again, all

Just to give you the results from my CT scan: I went back to see my GP

this morning, and she said the results were still fairly inconclusive,

although several new facts had been established.

First of all, there was no sign of a tumour, so she said that liver

cancer looked extremely unlikely in the light of that.

Secondly, there were signs of fat deposits in my liver, and also some

'scarring', although, she said, nowhere near enough to start to

suggest cirrhosis at this stage.

Regarding the current state of the liver, she said it is clearly 'not

very well', in that it doesn't seem to be functioning quite like it

should, so she has said the next two courses of action would be for

her to ask me to have a further battery of tests to try to determine

the cause of my ongoing discomfort, and to then - based on the outcome

of those tests - to escalate this to the stage of a referral to a

liver specialist to see what they could find.

The clinical details on the test forms are stated as:

'ct shows chronic liver dis ?cause'

And the blood tests have been requested under the following designations:

LCA, LCRP, LFBC, LFER, LLFT, LTHY, LUE, LHBA1, IAAT, IANA, ICER,

ICOEL, ILKS, ARC, HBSG, HCAB and HIV.

Not sure that anyone on this forum will be able to identify all

those, so I might have to start 'googling' them tonight to try to

figure out their meaning.

She stressed that she didn't want me to view all this as 'urgent' at

this time, and was merely trying to get to the bottom of the problems

before they went to develop into anything worse. She suggested that I

stop drinking alcohol altogether, at least under they determine the

precise nature of my problems.

I asked her if a biopsy was likely, and she said 'probably', although

she quickle added that it would eb at the discretion of the specialist

once he'd studied my symptoms and the results of the blood tests.

My mood sunk to a real low during the appointment, and was only lifted

later by the thought of coming on this forum and giving you all this

news. I know I'm 59, and have drunk a lot in my life, but I really

don't want to die just yet, and don't want all these increasingly

serious sounding tests to lead to into the quagmire of a frightening

diagnosis, but that sums up the way I feel today.

Does any have any comments on all this? If so, they'd be very

gratefully received, as ever...

sunflower1 profile image
sunflower1

Hi Graham...Not sure what to say about this really to be honest.. And I cant offer any advice Im afraid. obviously its great news no sign of tumor, remind me, did you have normal liver function tests previously? And you had a ultrasound which prompted the CT Scan is that right?

Sorry I dont know what any of the abbreviations mean apart from I suppose the HIV one. and what tests the are but would like to know when you find out?

So have you had these blood tetsts yet? Have they asked for or have you had a Fibroscan done?

Am I rght in saying you have no symptoms apart from pains in the liver area.

Doc did say she didnt class all this as urgent so be reassured that they know best?I know its all easier said than done but try to keep your chin up. Take care, try not to worry and keep us up to date.

Kellan38 profile image
Kellan38 in reply tosunflower1

Hello Sunflower1

Thank you for your reply.

I had no symptoms other than pains and discomfort in the liver area and, sometimes, in my abdomen and back. These are what prompted the referral for an Ultrasound scan, with this coming back with nothing more sinister than a 2cm long 'fatty chain' in my liver, which my doctor said both her and the Radiologist were almost certain was entirely benign. This proved to be the case from my CT scan, but the GP said the CT report had come back as abnormal in that the liver wasn't functioning as well as it should, and needed further investigation. This will initially be in the form of further liver function and other blood tests, with a very probable referral on to a liver specialist.

I haven't been for the blood tests yet, and all the blood tests I've had in the last two or three years have been absolutely excellent, with no cause for concern. Now, however, it seems there are some strange birds sitting in the trees that seem to have slightly unnerved my doctor.

What all this can mean, I've absolutely no idea, but I know my fears and worries are increasing by the day, send will surely continue to do so unless I get some kind of positive conclusion to all this...

briccolone profile image
briccolone

I can't comment on the doctors comments re ct scans-I Have no experience-others will certainly have more knowledge. However-the good news is you're going for all the right tests-the doctors are not ignoring you. It does appear you have some fatty ingressions in the liver. I would work on diet and exercise keep the sugar/alcohol on the low side or abstain from drink completely as advised. Be positive-I don't think you're in serious strife just yet. THink you may just be unlucky with the symptoms-many people with fatty liver have no symptoms. Be thankful that you've had early warnings in order to make changes.

Kellan38 profile image
Kellan38

Having heard nothing from my GP in nearly 3 weeks, I finally called in for the results of the blood tests today. In one of my previous posts you'd have seen that my GP had sent me for just about every liver function blood test she could think of in order to get the best overall picture of the current function of my liver.

The good news is - and I'm as surprised as I'm delighted in being able to say this - that all of the results came back as totally unremarkable, and were summarised as 'no further action' being recorded on my file at the GP. Imagine my surprise then when the receptionist at the doctor's went on to tell me that I'd been referred to a Heptologist for further tests!

Now, all I can imagine is that the GP is satisfied that there's nothing major going on ie no cancer, no cirrhosis, no sign of imminent liver failure or anything like that, but is merely wanting to get to the bottom of what she previously end scribed as my liver being 'not very well'. And yet, how can this really be the case if that that entire raft of liver function tests came back with the readings they did, and prompted a comment of 'no further action' on my file? I'm as baffled as ever now, though not quite as anxious as I was, and I just wondered how you all might read these latest events. Would you say we're looking at a fairly simple case of fatty liver disease, or could there yet be something more sinister going on? And would a probable diagnosis of that malaise only be confirmed by a Heptologist anyway? Could this be what this new referral is for?

In general, I've had far less discomfort around my liver than I had when I first joined here. Most of the symptoms have now abated, although I'm still aware of slight discomfort at certain times around my liver. I'm starting to lose a little bit of weight now, am being very careful in my diet, and have reduced my consumption of alcohol to next to nothing, and although I do still have the odd couple of bottles here and there, it's nothing compared to my previous levels of consumption throughout my life.

As ever, any advice that anyone could give me would bet very gratefully received.

Ph1ldad profile image
Ph1ldad

sounds to me you're doing everything you need to do by changing your diet and loosing weight. Your gp is doing the same. Not all liver conditions can be detected by blood tests and sometimes a specialist view is needed. I've developed side conditions which haven't been picked up with blood tests. Go with it and hope the tests stay negative. Then you know you can improve your health with diet and lifestyle. good luck. Phil

Kellan38 profile image
Kellan38

Hello again everyone

I've been away from here for a week or two, partly because of simply being busy, and partly because I tried to forget my symptoms for a while. I think I attempted to to 'kid myself' that there wasn't all that much wrong with me that I couldn't simply 'shake off' with a positive attitude and some fresh determination to not let things get me down.

Unfortunately, I have to report that my health has taken a turn for the worse again. The pains I only previously had intermittently are now virtually ever present around my liver and in my back, and I am extremely anxious now as to what they could be. I've still not been given an appointment to see the Heptologist, and am at a loss at to how I might find any treatment or any help (apart from on this Forum) to try to give me a bit of hope that I might eventually get well.

From thinking I was possibly starting to make a gradual recovery, I'm now completely down in the dumps again, and very fearful for my future - fearful, even, for my life if this continues to worsen.

Does anyone have any help they could give me, or any words that might go any way to convincing me I can get through this in one piece?

Any help and advice, as ever, would be very gratefully received...

Graham

Brummi profile image
Brummi

Hi GrahamB8, I am fairly sure that any cancers would have bee picked up during your last blood test. Worry and stress will play tricks on your mind, one of the hardest things is convincing yourself to be positive. Stay positive and try to make your life as normal as possible. As for alchol I was never a big drinker anyhow actually no booze has been touched since I was diagnosed with PBC in 2011 .

Kellan38 profile image
Kellan38 in reply toBrummi

Thank you for that, Brummi. I just hope they can get me sorted soon. I'm feeling slightly better today, but I was very down when I wrote that entry last night, and was feeling pretty pessimistic about everything then.

I need to find a lot more out about the sort of pains that fatty liver disease can generate, and I also need to try to find things about PAWS, too, on this website.

Thank you again for your help, and I hope all goes well for you.

Dottydot62 profile image
Dottydot62 in reply toKellan38

Hi Graham I just read all your posts and just had to reply even though your last post was quite a while ago would love to hear how you are now hope everything is fine, the reason I am on hear is because I have the same symptoms as you and saw your post so have signed up hope to hear from you 😉

tillycindy profile image
tillycindy in reply toDottydot62

hi dottydot62. Like you came to Graham,s posts late while scrolling through ( fairly new to this site ) have come to you,re post 5 months after the fact! Did you ever hear from graham? It,s tough to not know how folk are doing esp when you feel their distress and you want to reach out to them. earlier read about another lady who happens tobe in my area who has got into a bit of a pickle with similar liver probs to myself cirrhosis pain ect and hadn,t got things like lifts to hospital am going to try and find her next though people on this site really were great as usual and she seemed to have quite a lot of replies and support already. I really get caught up in folks stories and find myself worrying about them. don,t know if you will see this but I hope to hear how you,re doing. yours anne (tillycindy)

Jujujojo64 profile image
Jujujojo64 in reply toKellan38

Hi Graham, I've been following your posts but see you havnt been on here for some time , how are you??

Ladybugsgg profile image
Ladybugsgg

Hi there, I just made an account specifically so I could reply to you! I see that you wrote your concerns down in your post a whole year ago, so I'm just wondering how you are and if you have yet had any more results?

When reading it at first, it seemed to look a lot like having issues with gallstones, possibly obstructing a bile duct? Looking forward to hearing back from you - Georgi

Robrien profile image
Robrien

Hi Graham I am having similar pain issues as you but I also have yellowing of eyes, whitish nails and a sore leg, slight swelling of foot at end of day. Also my stools are strange tan colour and quite limp/slushy looking. I have a desperate thirst. I also have had terrible sleeping problems the last week. Unlike you my doctor thinks I am being a hypochondriac and doesn't seem to want to help me. I have had a liver function test 6 months ago which was normal and I did another one yesterday and will get the results today. I have an ultrasound tonight that I had to push to organise myself. I am 48 have 2 young daughters 8 and 6. I have always drank, it is my relaxant and truth be told have rarely given my liver a rest in years. I completely stopped drinking 6 weeks ago and have cut out salt and am eating a diet for liver disease. I am so worried and it just doesn't seem easy enough to get answers. Please let me know what happened in your case...

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