British Liver Trust
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Questions to ask the Hepatologist

I have been referred to a Hepatologist my appointment is next week. Just wondering what questions you think I should ask, I have spoken to Sarah from the Liver Trust but was just wondering your thoughts, see my previous post for ALL my symptoms/history but a quick update is, I have had pins and needles in my hands and feet for over 3 years

I am convinced its my liver, I am a 39 year old female and have drank alot over the past 20 years. I drink approx 3 bottles of wine a week now. but as i said have drank alot more over the past 20 years.

My most recent symptoms are pain under ribs and itchiness in hands and feet and a sort of throbbing feeling in them as well. I have red patches on each palm of my hands sometimes a really bad right hip and bad back All blood tests have come back normal, most recent tests 24th December, had an Ultrasound Dec 2011 all clear had a Firboscan done through the Liver Trust roadshow this January results were:

Median Stiffness 6.7

Interquartile 1.2

IQR/MEDIAN 18

VLAD MEASUREMENTS 10

no of measurements 14

success rate 71

I have heard that all these tests are not conclusive, do you think I should tell the consultant I have had a Fibroscan or ask them to do one to see if its any different from the above.

I will write a list of questions, just don't want to miss anything out as I have been going to the doctors for about 4 years off and on and would like some answers! If there is anything you think I need to ask please post. Thanks everyone!

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Hi Sunflower. I'm assuming this appointment with the hepatologist is to hopefully get a diagnosis of a problem? That as yet your tests have been liver function tests run by a GP which have come back normal, and a Fibroscan and ultrasound which have not conclusively shown liver damage?

Liver function tests alone can't diagnose specific types of liver disease (of which there are around 20 diffferent conditions that can affect the liver, one of which is alcohol). Your liver is good at compensating for all the rough handling you throw at it with long term drinking, but it can only compensate for so long. For now, the LFT tests may be coming back ok, but keep up the drinking and some time down the line things will start to go askew.

I think at this appointment, if there is as yet no clear diagnosis of what is causing your symptoms, it will be the consultant asking you questions rather than you asking them! This is the time for them to go back to square one in your medical history and lifestyle, and for you to be 100% honest with them about anything in your life that could have or could still be damaging your liver. That includes alchohol consumption, diet, any family history of diabetes, use of drugs (over the counter meds such as painkillers included, not just any dabbling in IV drugs or others), any countries you might have visited where you might have been exposed to iffy healthcare/bloods/viruses, etc etc. They should run tests for things like HIV/Hepatitis/autoimmune/other conditions that put stress on the liver/kidney function etc etc. The full works.

Yes tell them the Fibroscan results, and take with you copies, if you have them, of the results of all previous blood tests. Your GP should be able to print out copies for you. If you have a letter telling you the results of the ultrasound, take that too.

The more info you can give the consultant, the easier it will be for them to build up a picture of you to add into the facts and figures of test results.

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Hi Bolly, Many thanks for your response. Yes I am hoping to get some sort of diagnosis of all the symptoms I have been having as you quite rightly say nothing has been conclusive so far.

I have had quite a number of LFT's over the past 4 years all of which have come back normal.

I have never been to this sort of appointment before so didn't know what it might involve, I just want to be sure I am telling him all of my problems as so far the doctors I have seen have kind of brushed me off and said well all the bloods are coming back normal so there is clearly nothing wrong with you. I will of course be honest with them, I have not used drugs or been exposed to dodgy healthcare. Will they do all these tests again on the day do you think, i.e blood, HIV (crikey!) etc etc. Do you think they might do another Fibroscan or might they not bother if I tell them I have already had one.

I don't have any copies of my test results unfortunately but I am assuming they will have access to my medical notes? I wont get chance to get to the doctors now before my appointment on Thursday.

Thanks again for your advice, it really is appreciated.

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Hi suflower.

In answer to your question about access to your medical notes. In my experience of my care being split between my GP and hospitals, no your medical notes are not necessarily shared amongst them. Your GP is your primary carer, the consultant/specialist in the hospital is at secondary level. If they are in the same region and NHS Trust, then electronically they may be able to share medical notes. If not then chances are their IT systems aren't compatible. From now on, take a note pad/file with you and make sure you keep copies/make notes of everything said and ask for results of all tests if available. Quite often the outpatients dept of a hospital ask you if you want copies of any letter sent to your GP, in which case say yes.

Its not too late to get test results from your GP. You have 2 days. Ring them up, speak to the GP secretary, explain you have an appointment with a specialist on Thursday and you would like to take with you a print out of the last of lot of blood test results done please. Then collect them from reception in person. They may try and brush you off with 'time' or 'cost cutting' or 'we dont normally do this', but be friendly and polite and persistant and ask again.

Chances are all your GP did was send a referral letter to the consultant saying something like 'this lady has presented to me with these symptoms xyz, I would like you to see her..."

In my experience consultants like to start with a blank page with a new patient and run all their own tests of their choosing using their labs, so be prepared to donate some more blood. I expect they will take bloods on the day, and then discuss the results next time they see you, assuming there is a next time.

Common diseases of the liver should be ruled out at this stage, so the consultant shouldnt make a bold assumption that its your drinking that is the problem, they should rule out other causes. That includes all the Hepatitis viruses and its now standard to include HIV among those tests. If you want to get to the bottom of your symptoms and get better you have to bite the bullet and be prepared to undergo testing.

I know its baffling to feel ill and yet have tests come back normal. I was in that position for many years, with chronic hepatitis that, by the time doctors were running blood tests on me my liver was cirrhotic and the LFT results were coming back artificially low/normal, making them assume I was fine when I wasnt. It needs more than just liver function tests to get a diagnosis, if the LFTs are normal but the patient, you, has other symptoms that are not.

No I dont think they will run another Fibroscan. Its an expensive test, not all hospitals have a machine, and though it tells you how 'stiff' or damaged your liver is it doesnt diagnose the reason why it is stiff. At this stage, you need someone to tell you what is causing the symptoms and the assumed damage to your liver.

TBH, you know most of the story yourself - it's likely to be your history with alcohol. I doubt the doctor will be interested in treating you unless you commit to stopping (not cutting down, stopping) drinking. If you need outside help/support groups/counselling etc to do this, then start organising that now. If your liver has been damaged by something else, a virus or whatever, it still wont get better unless you stop drinking. Alcohol on a damaged liver is like gasoline on a fire.

The appointment will be similar to a GP appointment except hopefully a bit longer. I expect you will be weighed and measured by a nurse first and then have to wait a long time in a waiting room - take a book/music etc! Write down now as much as you can in date order of your medical history, so that its quicker to answer accurately if the doctor asks you for it. Write down now as accurately as you can your drinking history.

Write down now as accurately as you can the dates and outcomes (if you know them) of your previous GP appointments for these symptoms and what the GP said when test results came back.

Take a copy of any letter you might have had with the results of the ultrasound and a copy of any letter you might have had with the Fibroscan result. The more info you can give the consultant and the faster, the more time he will have to assess what to do next.

If he doesnt seem interested in all your notes and paperwork, dont get upset, they all work differently.

Make a note of everything they say to you, as chances are when you come out of the appointment you wont be able to remember half of it!

Best of luck and let us know how you get on.

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Hi Bolly, thanks for your response, really appreciated.

I will try my docs but don't hold out much hope to be honest. I did just assume they would be able to see all my history at the hospital , guess I was wrong there!

I really don't mind what tests I have to have so long as I get results.

Its very frustrating not knowing what's wrong with me, what did it take to finally get your diagnosis and how are you?

I do have a lot of detail written down but nothing in writing from the doctor.

I am thinking maybe I shouldn't tell them of fibro scan and they might do another as i have heard they are also inconclusive ,I think they do have a machine at the hospital I am visiting or am I being silly about that?

I always take my notes with me and info from the liver trust which my doctor tends to ignore. Thanks alot

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I will post again later once I have got hold of docs.

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Sunflower I have just looked back at your other posts asking 'do I have liver disease'.

I think the answer is, tests would suggest you dont, as yet, but that you do have a problem with alcohol.

It seems pretty clear from what you say about your drinking and the symptoms, and the answers you have got from other posters that the CAUSE of your symptoms is too much alcohol. The cure is simple - stop drinking.

If you dont want to stop drinking because you like it too much, then carry on, but expect to continue to get unpleasant side effects.

Your head seems to be saying 'as long as no blood test/other test results come back abnormal, then there is nothing wrong with my continuing to drink' - is that right?

Are you hoping to get one or more abnormal test result so that you will have the motivation to do something about it?

There doesnt have to be an abnormal test result to prove that your liver is damaged. The alcohol drunk in the quantity you drink is slowly damaging your liver, but as yet its not bad enough to show up on tests. Its just the outward symptoms that are showing you the signs. Yes the liver can heal itself, but only if you permanently remove the cause of the damage. Replace the cause, the alcohol, and the damage starts again, each time from a less healthy baseline. You cant stop/start the process and hope to become fully recovered. You have to stop and become teetotal. Life can still be fun without alcohol (and it saves a whole lot of money to spend on other fun things!)

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Bolly,

Thanks for your frank and honest response....

I think you are right in saying that I do think so long as every test comes back negative then I am ok to drink but I just need to cut down and maybe I am waiting for someone to say.. " you need to give up drinking or you will die" None of the doctors or Liver trust have said anything like that so maybe I feel that just gives me the green light to carry on drinking.

I am not sure that I have a "problem with alcohol" though. I can take it or leave it, I dont have a drink now, I wont have a drink tomorrow, I have wine in the rack that will stay there for a couple of months but maybe I need clarification of what " a problem with alcohol" actually is.

There was a guy I used to work with who saw his doctor and said you need to give up drinking for a year to improve you liver, which he did then went back to the doctors who said yep your liver is better and you can drink again in moderation.. Maybe he was lying Iam not sure.

I did call the doctors earlier to clarify with regards to all my previous tests, she told me that they would have all my details with the letter of referral so no luck there.

Thanks again for your time.

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Going back to your question 'do I have liver disease'. Let's say you go to a gym for the first time, and do a lot of sit-ups and weights. Its also quite hot in the gym and you've forgotten to take any water with you. Next day your stomach muscles are sore, you have a headache from dehydration and you feel pretty rough all over.

Your body is telling you something; that you've been a bit harsh on it; it needs some TLC. If you go to the GP, no blood test or imaging scan would clinically show that you had sore muscles and a headache and were a bit dehydrated. The damage is small, and the symptoms that you feel are enough for common sense to tell you something is wrong and common sense guides you as to how to make it better. Drink water and rest the sore muscles. If you ignore what your body is saying and go back to the gym next day, repeating the exercise routine and the lack of fluids, your body will react again by showing more of the same symptoms, perhaps worse symptoms. If you ignore your body again and carry on with the gym, eventually you might do some more permanent damage to your muscles that can be picked up on an x-ray, or damage your metabolism enough for it to show on blood tests that you are severely dehydrated.

Its the same with alcohol and your liver. Drink moderately and within recommended safe limits, and when you are not drinking, your liver should be able to 'cleanse' the toxins from the alcohol and stay normal. No liver damage will show on any medical/clinical tests after each drink, though you might have a bit of a headache or a dry mouth or feel a bit lousy the next day.

Drink 'a lot' over 20 years, regularly drink more than 14 units a week (3 bottles of wine = 27?), and your liver will start to struggle to repeatedly 'cleanse' the toxins and stay normal. Symptoms of its stress are showing themselves to you - the itchy skin and the pains. From a medical/clinical diagnostic point of view, nothing yet shows up on blood tests/scans etc. Your liver is working hard to 'compensate' for the toxins, and is managing to keep enzyme/blood levels normal when they take blood from you and test it. Your liver isnt yet showing visible signs of scarring or stiffness that can be picked up on fibroscans and ultrasounds. But your BODY, through the symptoms it manifests, is sending you a message. Like it sends you a message if you overdid the sit-ups or weights.

Listen to the message and act on it if you dont want those symptoms of itchy skin and pains any more.

Usually the end result of a person going to their GP is a prescription for a pill to 'cure' or 'ease' whatever their illness/discomfort is. There is no 'pill' to cure stress to your liver by drinking 3 bottles of wine a week. The 'cure' for that is not to drink 3 bottles of wine a week. The complete cure is not to drink any bottles of wine a week, or even any glasses of wine a week.

Often the end result of a person going to see a liver specialist is either a course of medication or surgery to cut out part of the liver. There is no medication or surgery that can 'cure' the stress to your liver from drinking 3 bottles of wine a week.

I'm not sure what a GP or a liver specialist can prescribe to you as a 'cure' for your symptoms apart from advising that you stop drinking alcohol.

I'm not saying you are addicted to alcohol or an alcoholic. But it seems that your liver and your body is saying to you that THEY have a problem with you drinking alcohol.

If you want to get rid of the symptoms that take you to the GP and to the specialist, stop drinking and I would bet money that they will ease and probably, over time, go away. If, as you say, you can take or leave the wine in the rack,, then it wont be difficult for you to leave it in the rack - for a year, say, and see how much better you feel. (That also means leaving the wine behind the wine bar counter, and leaving the bottles of wine on the supermarket shelf, and declining a glass of wine with a meal out, and declining a glass of wine when out with friends etc etc, lol!)

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Thanks again Bolly for your detailed response. I am at work so will respond. More later.

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Hi Bolly,

Again thank you for taking the time in sending such a lengthy and detailed response. To be honest I have learned alot more from you than I have from any doctor or the Liver trust and I have been talking to both for quite some time.

I did think that if i had actually damaged my liver that it WOULD show up on tests but from what you have said that is not the case, it can still be damaged yet nothing show on the Blood tests, Ultrasound and Fibroscans and I have heard on numerous occasions.. "these tests are not gold standard" So I am assuming you must be "very ill" for something to show up in these tests and once they do show they are not reversible.

The liver trust said with regards to my itchiness and Red patches that I may have a skin problem and that I might see a dermatologist although as I said I really don't think its that sort of problem. Also they guy at the Liver Trust roadshow said well you do drink over the recommended levels but to be honest you don't drink "THAT" much.

I don't know what I am expecting tomorrow to be honest although I don't expect them to give me something to ""cure" my problem.

What my doctor and the liver trust have said is that my body may have become "sensitive to alcohol" and no longer tolerate it very well and that I should cut down... My appointment is tomorrow and I will take my list of questions and everything else with me.

I will keep you up to date, although you know what the outcome will be!

Thank you :-)

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Off to my appointment for 10.20 with specialist.....

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Good luck with your appointment and I hope they rule out anything permanent.

Your use of the word 'damaged' is probably a little harsh. As you know, nothing has been clinically proved as 'damage' But it seems from the symptoms you get you are because you are hurting your body or at least putting it under stress by drinking more than a moderate amount.

You may also have a not too healthy diet, lifestyle etc. Dont we all struggle to eat well when working and probably relying on convenience foods with added sugar and salt. I bet most of us wish we were better at exercising too.

Pretty much everything that goes through your digestive system will affect your liver. It helps with processing digested food, it controls levels of fats, amino acids and glucose in your blood, it clears the blood of infections including bacteria, it neutralises drugs and toxins, it stores iron and vitamins, it breaks down food and turns it into energy.

The easier you make it for your liver to do all this, the healthier you will be. The harder you make it for your liver to do this, by eating too much fat or sugar, by drinking too much, by taking a lot of medication even over the counter meds like paracetamol, by not having enough vitamins, etc etc, then the more stress your liver will be under and the more side effects such as aches,pains, skin problems, feeling tired, less stamina etc etc you will suffer.

Skin problems on your hands can, as the liver trust people said, be caused by other things - allergies to something you touch or wash with, excema, dry skin, poor circulation etc. Pain in your abdomen can be from lots of things, indigestion, heartburn, pulled muscles, gallstones, acid reflux etc etc.

I think you already have a link between cause and effect, i.e when you cut down the wine consumption you felt better.

Try it again, this time for longer, and see if things improve.

Ideally, cut out alcohol altogether to see what happens, as it seems from what you say its more likely to be that causing the symptoms than, say overindulging in chocolate!

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Thanks Bolly, just leaving now, but am taking you with me,Technology today eh!

All the above noted, My diet isn't too bad and I am under 9 stone, so could be worse. One thing I also drink ALOT of is tomato juice. Liver trust said to mention that as well which I will.

Im off THANKS!

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Ok, Just got back from Hepatologist who has concluded that I do not have any stage of Liver Disease, I told him all my symptoms and amount I drink and he basically said that due to the Blood tests all being normal ,which they have been for over the 3 years i've been having them, the Utrasound being normal and the most recent Fibroscan that I had a few weeks back he cant see any signs its my liver.

He said something would show up on these tests.

He does think it might be due to stress and anxiety/ irritable bowel syndrome which he has said to mention to my doctor along with perhaps diabetes. He said that the pain I am experiencing in the area is not liver pain, mine tends to come after I have drank which he says would not really happen, he said that I would have the pain ALL THE TIME, a dull ache and not the sharp pains I have, he also said this WOULD show up on the tests I have had.

He has taken another lot of blood tests but did not test for HIV. He did mention PBC, which I was about to mention, again he said it would have come out in the blood results.

He also confirmed if I had a fatty liver it would show up on the tests, and in early stages its reversible.

He did say that I need to cut down on my alcohol intake and due to me being quite small I should probably drink less than the recommended amount for women.

So in all how do I feel about this? well I am not sure really. I have to phone in a week for my blood test results and then he said he will send me another appointment with him for 3 months time, not sure why really.

Thanks for your advice and listening to me waffle on and on! Your thoughts please :-)

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Sunflower, I would ask

1. Did you learn anything from the hepatologist that you didnt already know.

2. What different things will you be doing re your diet/lifestyle over the next 3 months before you go back for a review.

And

3. could you post a food diary for, say the last 4 or 5 days, just curious to see what your current diet is like. Include drinks (as these will add calories to the total intake), and if you list a meal like say, spaghetti bolognese, can you say whether its a convenience ready meal or one you make from scratch with fresh ingredients. If you cook from fresh, list the ingredients. Include any snacks between meals, and a rough idea of portion size.

Thanks

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Hi Bolly,

Um did I learn anything, well not a huge amount apart from him saying that if my liver was swollen it would ache all the time and discomfort would not in his experience come and go like mine does. He also told me my toilet habits were not normal!

I will cut back on my alcohol intake and try to eat more vegetables! I must admit my fruit and veg intake is poor, here is my diary:-

wheatabix x 2 milk and sugar

Roast beef 3 slices

Mushy peas

Broccoli, cauliflower cheese

Red cabbage

3 roast pots. Red wine and port gravy.

Can of coke, around 3 cups of tea 1 litre tomato juice.

2 slices of toast 1 With peanut butter the other marmite

Meal for 1 hunters chicken, red cabbage.

2 nice biscuits, 4 cups of white tea 1 with sugar

500 ml tomato juice.

Wheatabix x 2 milk and sugar

MeaL for 1 chicken in red wine sauce with pots, red cabbage

Around 4 cups of tea 1 with sugar 1 choc digestive biscuit

500ml tomato juice

2 slices of toast 1 with peanut butter 1 with marmite

meal for 1 cottage pie

4 cups of tea 1 with sugar 2 nice biscuits

500 ml tomato juice

Wheabix x 2 milk, sugar

4 cups of tea 1with sugar

Supermarket curry, chicken korma, quarter packet curry rice, 2 veg samosas, 2 veg pakoras 4 glasses of red wine

Extra bits, a couple of slices of cheese, about 7 haribo sweets. All meals for one are low fat and low in calorie variety from Morrison's.

I think I have listed pretty much everything. What are your thoughts?

Going back to what the specialist said about possible IBS, since about December time I have had an uncomfortable feeling in my stomach and sometimes not felt that hungry, I don't tend to each lunch anymore whereas before December I would have a salad for lunch Mon to Fri and soup/sandwich at the weekends.

Thanks for listening.

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Most of us probably eat processed food from the supermarket. I know I do, even though I would like to think I know what a 'liver friendly diet' should be. I know I should limit my salt and limit my sugar. The biggest culprits in modern diets are sugar and salt. Second to them probably comes gluten, more and more people with gut problems find gluten the cause.

I've looked up the ingredients of your first day's intake. Morrisons arent forthcoming about nutrition content on their website, so I've used similar products from other supermarkets and in some cases the meal/pack size will be bigger than you ate, as the convenience vegetable meals (broccoli cheese bake for example, feed 2 I imagine, when added to other things), so its by no means accurate.

Here is a breakdown:

Weetabix. 2 bars with milk 1.7g of sugar 0.2 of salt

A tsp of sugar on the cereal 8g of sugar

Morrisons beef dinner 2.7g of sugar 1g of salt

mushy peas (can) 1.4g of sugar 0.8g of salt

can of coke 15.9g of sugar 0.75 of salt

broccoli/cheese bake 6g of sugar 1.5g of salt

convenience red cabbage 14g of sugar 0.4 of salt

litre tomato juice 10g of sugar 1.5g of salt

Total sugar = 59.7g

Total salt = 6.19g

Recommended for women is no more than 24g of sugar per day and no more than 6g of salt.

Going back to an earlier post, you said "My diet isn't too bad and I am under 9 stone, so could be worse"

Re the diet, well give me a bit longer and I'll work through the rest of your food diary, but on first glance your diet looks much too high in sugar and salt, and very low in any fresh foods and fibre.

I dont know your height, but you did say one dr said you were 'small' so at under 9stone I guess you are maybe less than average height. There doesnt seem to be a reason to be eating low-calorie meals. In order to improve the flavour of these meals once the fat content is lower, manufacturers add, guess what - yes, sugar and salt.

When I was being 'good' and into a liver friendly diet, this is what I ate in a day:

Breakfast: 40g bowl oat porridge with 300ml semi skimmed milk

Mid morning: Poached egg and baked beans on rye bread with olive oil spread

Lunch: Bowl pasta with chargrilled veg sauce. 2oz chicken or tuna. Bulgar wheat salad with red pepper, onion and coriander dressing made with olive oil. Avocado, cucumber and celery salad with low fat mayo. Banana

Mid afternoon: Two brazil nuts (for the selenium). Rye crackers with low fat philadelphia cheese. Apple. Toasted rye bread and organic peanut butter.

Supper: Whatever I cook for the family meal, excluding red meat, processed meat, and stodgy puddings.

Mid evening: Dorset Cereal spelt muesli (spelt, barley, oats, dried fruit, pumpkin seeds, nuts) with semi-skimmed milk

And in the gaps I snacked on nuts or fresh fruit.

I have slipped a lot recently, and eat more sugar laden cereal (weetabix, Shreddies) than I should and have started eating biscuits and cake again, though I usually feel uncomfortable after which could be the sugar or the gluten. I avoid supermarket bread, we make our own at home, as I find too much gluten in my diet gives me stomach problems.

IBS sufferers are recommended the FODMAP plan - google it. Its good for livers too.

Try educating yourself about it.

Avoid high FODMAP foods and choose low FODMAP foods.

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I must admit I only really eat the meals for 1 during the week as my husband is away. I used to cook a lot myself but saying that that was probably worse than ready meals!

Sorry the first meal I listed was home made roast so I made the cheese sauce myself etc. The cabbage was in a pack.

I am about 5ft 2 and 8 stone 10.

Wow I am pretty amazed at the total sugar content! I now take back what I said about my diet being pretty good! I know I am rubbish at eating fruit and veg, that has to change! I go for the diet version stuff because the normal range is soooooo high in fat.

I will have a look at food map thanks!

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Bolly, I have just googled the amount of sugar a women should have and the NHS website says 50g for women not 24 is this a typo do you think?

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Yes sugar is one of those things that isnt on the government list of 'recommended daily allowance' figures (these cover fats, vitamins and minerals), so its a guideline that varies according to which website you look at. However your 59.7g from day 1 is still over the figure you found. I found the 24g on the US Mayo clinic site, which is ironic considering how overweight many Americans are.

Whatever the upper recommended limit, there are different types of sugar (glucose, sucrose, fructose, lactose, galactose and maltose), which are in fruit, veg, milk , etc etc, so extra 'sugar' is creeping in. Your body doesnt need the processed sucrose that its getting if you eat fruit, veg, dairy etc with natural sugars.

Google FODMAP, not food map.

The other one is the GI diet, which is foods with a low glycemic index, these help to control blood sugars while giving you slow release energy through the day.

I found it frustrating to change my nutrition via the internet, as google 'diet' and its always about people trying to lose weight. At 8st 10 you dont want to do that. Using the word 'nutrition' is better.

It wont be easy to change, if you are not keen on cooking and have a busy lifestyle which suits convenience meals. Its also difficult to find stuff in the supermarkets that isnt processed and packaged. So start small, maybe change one meal a day to fresh, non processed foods, and take it from there.

But do cut down on the alcohol. If you dont know why you used to drink as you did, and to an extent still do, maybe a little soul searching is needed. There are support forums and support groups out there. Have a look, you might find some answers and your body (and your wallet) will thank you for it.

How about a treat for yourself, what do you like, - shoes, saving for a holiday, something new for your home, a spa day, a manicure, whatever - put the money you would spend on wine toward something else and enjoy.

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Thanks Bolly for your response.

Well coming up to a week since my visit to the specialist I still feel at a loss. I think I will wait for my blood test results to come back and depending on those wait for the letter from the specialist then make yet ANOTHER appointment with my GP.

I still feel there is obviously something wrong but don't know where to go with it next... One of the doctors last year said what do you want me to do now so that holds me with little hope!!

Its frustrating reading other peoples very similar stories and just not know what to do next and not getting answers. :-(

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Hi sunflower.

I guess you can go three different paths.

1) Do nothing

2) Rely on doctors to diagnose something, anything, in the expectation that a diagnosis and some sort of medication will clear the symptoms of intermittent abdominal pain and skin problem, but remain anxious in between doctor visits.

I know you are worried that your past history of drinking may have damaged your liver, however you have had assurance from the medical community that there is no clinical evidence of damage to your liver. Even when presenting with a some symptoms, without a clinical diagnosis a doctor isnt going to treat you for anything.

3) Make a start on improving your health by making changes to your nutrition and lifestyle.

With option 3, in my view, action is better for us than inaction. It makes us feel in control and that we are taking positive steps.

The question the doctor asked you last year is a pertinent one.

What do you want to do?

You're obviously worried, or you wouldnt have posted on here.

You can choose to continue to worry while you wait around in between doctor visits.

Or you can choose to take some action.

What do you want to do, yourself, to improve things?

What is a realistic goal for you to set yourself, to improve things?

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Hi Bolly,

Yes I am worried and can't get my head around all the symptoms but no diagnosis, I have pretty much convinced myself that I HAVE LIVER DISEASE, and that the experts are wrong and because I have read so much about test results not being accurate that just backs up my theory!

My latest update is... As mentioned in a previous post I have had an uncomfortable feeling in my stomach since around last nov/dec, cant really put my finger on it just uncomfortable, anyway today I woke and had actual pains in my stomach so I thought Ill just go to the doctors this morning as my bloods from the hops were due back anyway, saw doctor and told her what specialist said last week and said it might be IBS, she sort of agreed but has said she will arrange for another ultrasound this time of my stomach. She has also given me a prescription for Mebeverine Tabs.

Here are my LFT results which she said were perfectly normal:-

Bilirubin 6

Alkaline P 39

ALT 13

Albumin 36

Gamma-GT 22

Does this mean anything to you? I also had FBC which she said was all normal.

She asked how much fruit/veg was in my diet of which I told her not alot! She said i must try to east my 5 a day, I do drink quite a bit of tomato juice, that counts right?

My "3 month" follow up appointment with the Hepatologist has come through for AUGUST!

My goals are, cut down on the wine and eat more fruit and veg and I will probably just continue to stress myself out worrying, some things don't change!

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A lot to comment on here!

It will be interesting to see if the Meberevine helps. Your symptoms (at least the ones you list of stomach discomfort and skin problems) are found in IBS patients so probably sensible of the GP to conduct some trial and error treatment.

But see (4) below - try to cut out the alcohol while taking this IBS treatment.

1) Are you sure she said a 'stomach ultrasound'? An ultrasound cannot visualize the digestive tract. It cannot see the stomach, small intestines or colon. The digestive tract contains air (gas), and ultrasound cannot see through air. However an 'abdominal' ultrasound can see the pancreas, liver, gallbladder and bile ducts, kidneys, spleen, and bladder. I think you already had an abdominal u/s when your liver was checked?

If the doc is thinking of checking your stomach for ulcers/inflammation etc, its more likely they said an 'endoscopy' or 'endoscopic ultrasound'. This is when a camera on a tube is passed into your mouth and down your throat into your stomach. Normally done when the patient is awake.

2) Your mistrust of "test results not being accurate" (quote from previous post).

You've told us previously "I have been to my Dr's at least 7 times over the past 3 years and have had about 4 lots of [liver] blood tests which all came back ok". Even if these tests were done at different hospitals, taken by different nurses/doctors, and sent to different labs, on days when you did different things leading up to the tests i.e drinking/not drinking... you can be sure the results can be relied on as correct. You dont get that many false results when a test has been repeated over and over.

3) Your latest LFT results. Yes they are normal.

4) I recommend reading back over the advice offered by posters on your first thread on how to relieve/'cure' the symptoms you have told us about. Here it is:

i)"As you point out you stopped drinking and your symptoms improved. This to me is crux of the situation. You current alcohol use causes you a significant problem and therefore should be the first thing addressed to improve this issue"

ii)"I would be recommending that you stop drinking altogether. It will be a case of trial and error if you return to alcohol use following a period of abstinence. It may well be that alcohol will always cause you some pain as it appears that this is the way it has affected you recently".

iii)"Glad your tests results have been good. I'd be taking that as a great chance to tackle something you already know causes you harm before it does do real damage. As User 1 has said, the best bet is giving up alcohol altogether and to see that as a permanent step, not a temporary fix"

iv)"You have to work out for yourself what is more important to you, your health or alcohol - it really is that simple"

v)"Hi Sunflower1, it seems that the best thing might to be to stop drinking as, as you say, this is what elevates the symptoms. Regardless if results are negative if stopping drinking relieves the symptoms then I suggest that is what you do. I also agree that this means stopping for good"

vi)"The clinical test results confirm that you do not have any stage of liver disease. The practical evidence shows that your level of alcohol consumption is causing your symptoms. My simple suggestion would be to lower your alcohol consumption to a level where you become asymptomatic"

Here is the advice your doctors gave:

i) She recommended that I give up drinking for 2 months to see what happened which i did, well my symptoms did ease so she has said my body must have beome sensitive to alcohol;

ii) What my doctor and the liver trust have said is that my body may have become "sensitive to alcohol" and no longer tolerate it very well and that I should cut down;

iii) He [the specialist] did say that I need to cut down on my alcohol intake.

5) "I do drink quite a bit of tomato juice, that counts right?" - except that 1 litre contains 10g of sugar and 1.5g of salt.

If you havent been able to switch your 2 weetabix and sugar breakfast to something like a poached egg on rye bread or a bowl of porridge, then try making some lunch that includes fresh fruit or veg. Here's a pasta salad you could make the night before and take into work, and it only contains 3g of sugar and .02g of salt. It makes 4 portions so you can keep the rest for other days:

Cook 250g of pasta shapes and 140g of frozen peas, adding the peas for final 2 mins cooking time. Drain, rinse with cold water to cool. Tip into a bowl with some chopped herbs, lemon zest and juice, 2 tbs olive oil and plenty of seasoning and mix well. Cover and chill, spooning out portions as and when. (If you're making this for one person, by days 3 and 4 you'll need to stir in a little olive oil or something creamy to loosen the pasta). On different days add chunks of ham, salmon, smoked mackerel or tuna. Add sundried tomatoes, olives or roasted peppers.

6) "My "3 month" follow up appointment with the Hepatologist has come through for AUGUST"

Thats probably because you are considered non-urgent compared with a few hundred others on his list.

And after all that,

Sadly (7) your comment on another thread that you already know your 'problem' with all the above is

quote: "The problem is I don't want to give up drinking"

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Hi Bolly,

Thanks again for your detailed response, bet you are getting fed up with me!!!!!

I need to get to the chemist to get the tabs so will let you know what happens.

Now you mention it I am doubting what she said, I thought she said stomach but maybe not, will wait for the appointment to come through Yes I did have an upper abdominal u/s in 2011 which was all clear but that was a while back now so that may well have changed.

With regards to the LFT's many people have said that they can show up as "normal" but there still be a problem, at what stage would a problem show on these tests if ever? Same with the Fibroscan at 6.7 that was considered to be normal. I didn't ask the specialist if that could change over night what I mean is if I continue to drink the same amount would that change in a month or 6 months or a year.

Thanks for the pasta recipe, sounds lovely!

I do read over and over again all your advice and everyone elses which I really do appreciate, its acting on it that I need to do.

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Just reread my test results albumin was 46 not 36

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Just throwing this in there, have you had any tests for celiac disease? weetabix, wine and ready meals will be disasterous for you if you have.

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Hi kizzy, thanks for your comment, appreciated! No I haven't but have heard of it. Can you get it at any point in your life? What causes it? Many thanks.

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Albumin of 46 is normal. The lab results should have 'normal' range given against your actual result. If they dont, then its common practice to mark a L (for low) or a H (for high) if the result is out of normal range.

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Thanks bolly.

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How are things sunflower. Does the Buscopan help with any of the IBS symptoms?

The pelvic/hip/back pain doesnt sound like a liver symptom but does sound common to IBS.

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Hi bolly, I didn't get the tablets in the end as my tummy troubles eased up, will see how it goes, it is very off and on which might be normal to IBS, same with the back and hip pain although still feeling itchy and still getting pain,discomfort in the liver area. I have my tummy scans Friday. Thanks for concern. Hope you are well.

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If you havent made any changes to what you put into your digestive system - food/alcohol - you will continue to get the same pains and itches. Have you made any changes?

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I have cut back a bit on the wine and have started eating more fruit and veg, probably still not enough though.

I said yesterday morning my tummy troubles eased up, as soon as I write something like that, it all starts again! Really bad gurgling tummy and stomach pains/discomfort, if anything it does seem to be getting worse, I didnt really get pains a few months ago like I do now, more discomfort. And gurgling has only recently started.

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How about trying a gluten-free diet and maybe also dairy-free too. I've found it helps my IBS enormously although I still have milk in tea but rice milk on cereals now. You can get gluten-free pasta and biscuits, etc.

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