So scared


I know this isn't a forum for specialist advice but I'm at my wits end and wondered if anyone has had a similar experience or if someone could put my mind at rest.

I dont have a diagnosis of liver disease but have been very unwell for six months. My symptoms are: upper right abdominal dull pain and discomfort, almost like pressure. This is referred up into my right chest, shoulder and inner elbow of right arm. Feels like my stomach & liver is coming up into my chest and it hurts to take a deep breath. I also have awful flu symptoms that come and go with aching all over, weakness, dizzy, nausea, fatigue & cloudy brain. Tight headaches & neck pain and since Dec I've lost a lot of weight despite eating lots. I also get excessive thirst that drives me nuts. I've also had spells of muscle spasms, hearing loss and feeling like I'm going unconscious.

GPs have been slow to help but all my blood tests are normal except slightly raised white cells. I've had the liver function test repeated about five times and always normal. GGT was done a couple of weeks ago and that is also normal. I finally got an endoscopy and ultrasound recently and they were normal apart from a hiatus hernia. My GPs keep assuring me that my liver is definitely fine because the LFTs and scans are normsl but because im getting more pain around my liver I googled the accuracy of LFTs and was stunned to read they can be normal even in advanced liver disease?! Is this true? I don't know what the standard LFTs look for but are there any other tests I should have to completely rule it out? And if so any tips on persuading my GP to do further testing? They just seem to leave me to get on with it when tests are normal even tho I'm getting worse. So I'm having to research myself.

Many thanks for listening xx

63 Replies

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  • Hi Mandy28. I am replying to what you said but I have to be careful what I say about how much 'some' GP's know about liver disease. Suffice it to say my Liver Function Tests have ALWAYS been normal. I have liver liver disease for over 40 years. I do not want to frighten you.

    What you must do now is go to your GP (I do not know in which area you live). Do not go alone. Take support and demand that the GP refers you to a Liver Specialist. I see a Heptologist because I have HCV from a blood transfusion when they did not test blood in the UK.

    Also tell the GP that it is a known fact that a LFT result can be normal with liver disease.

    Please take my advice and act tomorrow.

  • Hi thanks for your reply.

    I'm so confused as A&E Drs have also confirmed my liver is fine based on my normal LFT and examining my tummy. Its so dangerous if they don't know what they're talking about. I thought the ultrasound would show something though?

    I am going back to the Drs tomorrow. The prob is its hard to see the same GP every time as so queued on the phones.

  • Be optimistic, things happen for a reason (so I've found out) maybe it is better to see a different one. Maybe the one you see will understand more. Do not ask for another LFT. Just be very friendly and ask for a referral to Hepatology. All the ultrasound can show is a growth, not liver disease or cirrhosis or fibrosis. It is a liver biopsy that diagnoses liver disease. Let us know how you get on. Good luck.

  • Thanks for your encouragement. Hopefully I will have better luck with another GP. I've seen so many different ones and most say they can't come in half way through investigations etc. They're starting to treat me like I'm neurotic.

    The lady who did my ultrasound said she would be able to see an enlarged liver and signs of kidney disease. I'm so angry that they say this stuff and then I find out it isn't true.

    I heard fibroscans can also diagnose liver problems? I was going to ask for one.

  • They might be able to see that, I am not sure. Yes Fibroscans can diagnose. They are not invasive and they are measured. Do not mention anything technical to the GP. They cannot refer you for a Fibroscan. It is the hospital who does all that. All you do is insist on a referral. You do not say in which area you live. If it is London, I can advise you where to ask for, for your referral.

  • Hi I live in Plymouth. I hope I can get a referral, I asked last week to be referred to a gastro specialist and the GP basically treated me like I was hysterical & said to get my ultrasound out of the way first (which I've now had). And then kept trying to get my liver fears out of my head.

    I just worry cuz even if they refer me it'll prob take weeks maybe months to see anyone & I've already wasted 6 months being fobbed off.

  • Hi Mandy, an ultrasound scan CAN actually show when things are going wrong with the liver. Your radiologist was correct in saying that the US Scan would show if the liver was enlarged/inflamed. It can show when the liver is enlarged or shrunken, it can pick up fatty liver deposits and changes in the cells/texture of the liver which would show whether the liver might be diseased/damaged, it can also pick up tumors and other such lumps which might occur and also hypertension in the veins around the liver. My husband was diagnosed with cirrhosis following an ultrasound, deranged LFT's and an upper GI bleed, endoscopy exam showed what had caused that. He later had a biopsy and repeated blood tests which determined the reasoning behind the changes in his liver which had been identified on Ultrasound. He has never had a fibroscan and only eventually had a CT scan at his transplant assessment some 2 years following diagnosis.

    What are they going to do about your hiatus hernia because this could be the reason behind some of your pains and symptoms? I would ask to see a gastroenterologist to see about this because a HH can cause reflux, pain and lots of what you describe and this itself could require surgery. Push for referral to a Gastroenterologist to see about this condition and they should be able to investigate further whether you do have issues with your liver.

    You are right in your reading that LFT's can be normal in advanced cirrhosis but cirrhosis would have shown up in your ultrasound.

    All the best to you. Katie

  • Thanks for your reply Katie :-) I hope your husband is doing well now?

    Yeah I breathed a huge sigh of relief when she said she saw nothing of concern on my ultrasound. From what I have read, for me to have symptoms this severe for this long would mean advanced disease which I'm told would definitely show up on ultrasound. She also measured the blood flow/pressure in liver and said that was fine. Its still worrying when the symptoms remain bad. I did get a lot better the last couple of weeks but have been bad again this week. I'm not sure hiatus hernia causes weight loss or flu symptoms but will ask my GP tomorrow. I read it can definitely cause nausea and thirst. The girl at my ultrasound said it could be my hernia causing the pain on my right as there's lots of nerves there.

    Anyway thanks x

  • I think from doing a bit of quick online research it is your hiatus hernia which needs some closer examination as it can cause digestive issues if it is one of the more complicated of the three types, it often also gets mixed up or leads to the misdiagnosis of other conditions due to the way it presents with the pain etc. Definitely see about getting some further guidance with that!

    Advanced liver disease would definitely (in my opinion) have shown up something on ultrasound.

    As regards my hubby, he isn't great and is awaiting a liver transplant having been listed in July of last year.

    Best of luck with getting some answers, hopefully you are a little more assured that perhaps this issue lies elsewhere than with your liver. A gastroenterologist will help with the stomach issues and should be able to direct initial care as regards the liver should there be any issue there.

    All the best to you, Katie :)

  • Thank you very much for taking the time to research HH complications. I looked a bit myself but went around in circles. I have read people having severe symptoms with that.

    I'm sorry your hubby is struggling, I hope he gets his transplant soon.

    Best wishes,

  • Hi again I also forgot to ask what sort of liver disease you have?


  • I have Hepatitis C caused by a massive blood transfusion, but about two years ago it turned to Primary C.

  • Mandy I do see a Gastroenterologist and he is also a Heptologist. As AyrshireK also mentions about Hiatus Hernia, I also have one of them but did not mention it because my Heptologist does not seem worried about it. I would add that about four weeks ago I had a hernia operation (long ongoing story). When I had real problems on my liver I was test for Ultrasound, CT scan, Coloured Ultrasound and finally Liver Biopsy. Nobody mentioned after any of the scans there was definitely something wrong, only after the biopsy but, I AM NOT A DOCTOR, I am ony trying to help - this is what happened to me and I think if you present with different problems, they may do things differently.

  • I am definitely going to press for a referral to a gastro specialist tomorrow as I think its long overdue and I'm sure he/she would pick up on liver probs too. Someone else also suggested my pancreas being the culprit as the pain began on the left upper side and was in the centre for ages before going across to the right. Maybe they noticed something inconclusive on your scans which is why they progressed to the biopsy before confirming. I hope you are doing OK x

  • Sorry to butt in but I just wonder what the Heptologist does aside from what the GP's have done? I have similar symptoms to Mandy28, have had tests.. Bloods, Ultrasound and Fibroscan (not CT) went to see the Heptologist who did nothing, he done more bloods but that was it he didnt even examine me yet said I was fine..

  • Hi sunflower, I feel for you, sounds like you're going through something similar. Were all yr tests normal? If so that's reassuring but also frustrating not to have a diagnosis. How long have you been unwell?

  • Hi Sunflower1, I go to a Gastroenterologist for years regularly who is also a Heptologist and I am shared by another Heptologist in another hospital. He arranges for me to have endoscopie etc. It was my Heptologist who referred me to another hospital because that hospital did not have the facilities to deal with my problems. I am a member of Health Unlocked since it started and always try to be helpful and, if I have given any wrong advice to anyone, I apologise.

  • Thanks for your advice Tatjana its all very helpful to hear different experiences so no need for any apology :-) I'm just grateful you took the time to read and respond to me :-)

  • Tatjana.. I am not being negative towards you and sorry for sounding that way, I didnt mean to.. The Heptologist I was referred to was not a lot of help. My question is still the same though.. what do they do to diagnose you? He arranged another appointment for you? That is my question. Thanks

  • Mandy, pain on the left COULD BE spleen. I had pain on the left and I have an enlarged spleen. You have just reminded me. It was diagnosed many years ago. Hope this helps. Best wishes for tomorrow.

  • I never thought you were being negative towards me. As you read I have HCV for over 40 years. I went to give blood at work. Received letter saying 'thank you but no thank you.' Referred to hospital, had PCR test. Then liver biopsy. I was told I had cirrhosis. (Now told I only have fibrosis). Then told I had Hepatitis C virus (got from blood transfusion when I had 14 pint haemorrhage when I had baby). Went on one of the first Drugs Trials - did not work - wrong genome. Still have HCV waiting for new treatment available through NICE. But, two years ago things changed. To cut a long story short (I knew it could always happen) my HCH infection resulted in a growth in the liver - I had Primary Liver C. Had resection and keep having follow-ups with four doctors - my Gastroenterologist/Heptologist in one hospital, my Heptologist (HCV) in another hospital as I am shared, my wonderful renowned surgeon who did my liver resection operation and my C specialist who I am seeing in less than two weeks at the same hospital as my surgeon.

    Just to tell you my first Gastro hep doctor has sent me for ultrasound, MRI scan, Coloured Ultrasound, several endoscopies and even a colonoscopy and liver biopsy.

    Hope I have answered your question and that I have been helpful.

    Best wishes.

  • sorry to hear your ill mandy. Get a copy of all your tests and use google or ask here to learn about them. Yes it is true that some liver conditions wont show up much on the Liver Function tests, but they are usually Auto immune causes. You could easily be tested for Hep b & c.

    An ultrasound does have a use, it can see moderate to major damage, but not so easily on mild Fibrosis. It can see fat, but there would be alot of fat for it to see it.

    A Fibroscan will see even mild fat that an ultrasound wont,it can also see mild Fibrosis and stage it. In some ways a Fibroscan is better than a biopsy, it has the coverage area of 100 biopsys. The only disadvantage is that you dont have the liver cells to examine. Thats where the biopsy is better, it can see auto immune issues etc.

    Try and relax a little, ive been where you are and I have had all the tests apart from the biopsy. All the tests you have had so far wouldnt miss end stage liver disease. I didnt start to calm down until i had the Fibroscan.

    Also some claims that only a biopsy is used to diagnose Liver Disease is wrong, i read dozens of accounts where its given without one.

  • Thanks for that its really helpful and encouraging. Did you ever find out what was wrong with you?

  • I agree with Ralph; sometimes a biopsy is not necessary to diagnose cirrhosis; this can be diagnosed by fibroscan sometimes; all these symptoms are strange and no doubt worrying and its awful when the doctors think you are a hypochondriac or something! ; but i agree with trying to get to see a gastroenterologist ; well, insist on it; personally, i doubt its your liver causing you these problems; whatever happens, if these symptoms continue, insist on further referrals as its fairly obvious something is wrong, and to lose weight whilst eating well is a bit worrying. Good luck.

  • Hello xxxx bless you !!! I can totally understand why you might be feeling scared x my husband suffered for quite sometime without diagnosis (don't let that scare you further) - I would go back to your GP and ask for further blood tests to include Hepatits serology and a Diabetes screen - are you aware that you can request a referral to a hospital to see a gastro team or hepatology team !!! There are so many different reasons why you may be feeling like this (I am just saying from experience that these are what I would ask for) - you say that you have had an endoscopy (camera down throat) - I would presume that if you had liver disease they would have seen signs of 'portal hypertension' or 'portal gastropathy' - they can tell quite a lot about your liver from that. From your ultrasound scan they would have measured your liver to see if it was enlarged etc and also your spleen (which is often enlarged with liver disease). You didn't mention why you are convinced it's something to do with your liver !! Do you drink alcohol heavily ?? From what my husbands symptoms were (and he went from diagnosis to transplant in 3 years) he had more abdo and bowel problems more than anything else πŸ˜₯πŸ˜₯ he did not lose weight - he gained weight as he was feeling so tired and stopped going to the gym - he had/has Hepatitis C that was undiagnosed for a very long time and did not drink alcohol (that may be why his symptoms were different) but despite abnormal LFTs it was the endoscopy that firstly diagnosed the 'liver disease' and the ultrasound showed nodules on the liver - he was later diagnosed with Diabetes through a blood test - unfortunately many don't realise that you as a patient are able to ask for referrals and second opinions !!! Your GP has to have a very good reason to decline - also try NOT to self diagnose through the Internet πŸ˜‰πŸ˜‰ it can lead you into all sorts things !!! Ask for print outs of your blood tests - anything out of the 'normal' range will have a * next to it - GPs have been known to make mistakes but are supposed to be quite clued up on 'liver disease' now - please try not to worry - have you considered it may be something viral ?? As I have not heard of 'breathing abnormalities' associated with liver disease or right arm pain - also I remember hubby's Bilirubin always being raised and low platelets - low neutrophils and albumin !! When you get your blood test results try using the online 'Childs-pugh' calculator as that should put your mind at rest - to be fair the GP will have done LFTs and full bloods so would be able to look at the whole picture xxxx good luck and please please don't be scared 😘😘😘😘 xxx

  • Have you been tested for diabetes? Wackie

  • I'm not sure? They did my sugar many times which has been normal so ruled out diabetes.

  • Sorry - don't want to upset anyone !!!! Gastro and hepato docs use a whole lot of info taken from 'USS/Endoscopies/Blood tests' - as in my husbands case - Ultrasound showed nodules and enlarged liver then Endoscopy showed portal hypertension and oesophageal varices and bloods showed raised Billi etc - they concluded he had cirrhosis from that information and refuses to do a 'biopsy' due to low platelets and risk of bleeding - all hospitals do things differently !!! Are you at RDE ?? I used to be a RN (until I saw the patients side πŸ˜₯πŸ˜₯πŸ˜₯) so may have a little bit more insight into the 'whole' picture most patients don't see - but defo feel your GP should be doing everything they could to put your mind at rest !!!!! I spent many years telling my hubby there was nothing wrong with him only to find out (once he was diagnosed and I requested his GPs notes !! being a nosy nurse) that for 9 years our GP had been saying LFTs were normal when every one was abnormal !!!!!! And I am talking 4-5 times the normal grrrrrr - we sued and won !!! But he wasn't struck off because he had only done it once ??????? There job is to treat you - and that includes everything - if you are worried then they should be doing there best to help relieve those worries xxxx

  • I would suggest that you ask for a 2nd opinion,preferably from a specialist. Also ultrasounds,while the can be useful may not be the best test for liver condtion. Better methods are a mri (magnetic resonance imaging) or a ct scan.

  • Hello thanks for your reply Robswife. I'm sorry yr hubby went through so much. It really is disgusting that GPs can provide inaccurate information. I mean they are on the front line and our only hope of getting life saving treatment, yet many seem underqualified when it comes to serious illnesses. I'm glad you sued them! How is yr hubby now? Did he ever get flu symptoms and confusion?

    Yes I had an endoscopy recently and all fine except hiatus hernia. Ultrasound also normal.

    Saw another GP just now & he basically said he doubts its my liver because the ultrasound and other tests were clear. Said my symptoms aren't classic liver symptoms. I insisted that I needed a specialist as can't go on like this and he said he would do a referral letter but thinks the NHS would reject it based on my normal tests. So I'm now booked in to see a private heptologist who's also a gastro specialist tomorrow! Will cost Β£180 but I don't care. If there is something wrong I need to know sooner rather than later and if my liver is fine at least I will finally know for certain.

    The reason I suspect my liver is due to where the pain is and many of my symptoms fitting. I'd never thought i had a drink problem, I was a bit of a party girl out nearly every weekend all through my twenties but so was everyone else. I definitely never drank every day except over a couple of days at a festival , but that wasn't often. My nights out slowed down to once a month over the last couple of years. I haven't had any drink for months now tho. I am a bit scared as found out damage can occur with binge drinking even if its only once every couple of weeks. If I've damaged my liver I will never forgive myself as its not like I even needed to drink so it would seem so pointless. My mates drink more than me on nights out and I know people who drink daily so I assumed if they are alright I must be. My alcohol liver test was normal. The other issue is I was on seroxat for years and eventially had a severe reaction to it which caused liver pain, tremors and toxic symptoms. It took a year to ween me off of that while increasing a new drug and I had liver pains the whole time. But my Dr didn't take that seriously as I was in a bad state mentally due to the medication problems. Im hoping that hasn't caused damage.

    Anyway thanks for listening I feel like I'm going crazy with worry xxx

  • Xxxxx hubby still suffering 9 months now since transplant !!! Had 3 x wound infection so massive (42cm x 20cm) abdo wound that is still healing - only 7cm left to go !!!! But is quite disfigured !!! Hep C is attacking his new liver so we have had abnormal LFTs since xmas πŸ˜₯πŸ˜₯πŸ˜₯πŸ˜₯ but he is still here and that's the main thing πŸ˜€πŸ˜€ you didn't mention about Hep C - did they test for this ??? Yes rob does feel 'flu' like - which is a symptom of Hep C !!!!!!

    Have you considered ME ???? Did drs say anything about your other blood tests ?? Hope you are feeling a bit better now liver has been ruled out xxxxxxxxxxxx

  • What your tests mean to date are that your liver isnt inflamed or very fatty and is unlikely to be at end stage. There could be some damage in some mild Fibrosis, I think the Fibroscan would be the best tool for this job.

    Can I just ask where your pain is? The liver is mostly behind the ribs and high up on the right breast and across to the middle, only a very tiny amount will stick out below the robs into the soft part of your stomach.

    A little bit of a concern is "seroxat for years and eventially had a severe reaction to it which caused liver pain, tremors and toxic symptoms" were you drinking with this? it can cause liver issues in some but 1 in 10000 chance. But again serious liver damage is unlikely to be undetected a this stage.

    PLease post your blood test results and we may be able to tell you a bit more than your GP has, they generally dont tell you anymore than "normal" but some its better to be at the lower end and others its better to be higher etc

  • Hi thanks. I will get a copy of my tests so far.

    I didn't have many nights out during the year when the seroxat played up as didn't feel like socialising. So not much alcohol that year.

    I've been a bit concerned about the neurological symptoms I've had on and off with this, mostly cloudiness, slow,some slurred speech and sometimes my hearing is muffled. One time I had severe muscle spasms and felt like I was going unconscious. But that obky happened once thank God. I read that could be a complication of liver problems? Anyone ever had it? Thanks.

  • i think your thinking its H.E right? thats an end stage symptom when the ammonia in your blood goes high and goes to the brain. If you had H.E your liver would be in very bad shape indeed. A pointer for scarring of the liver is your Platelet count. Cirrhosis will show something in the blood, some early scarring wont, early fatty liver wont.

    You have passed all the tests so far, imagine how you would be feeling if there were raised enzymes!? sometimes we can concentrate on the wrong organ too much, i really dont think all the doctors you have seen will miss major liver damage, but something could be brewing so you are right to keep pushing, just try not to get too anxious.

  • Thanks for your reassurance. It just feels like the pain and my fuzzy head are linked as developed together. Its a very scary feeling with numbness in my face too.

    I think they've only done the very basic LFT on me and GGT I'm not sure how helpful those are.

  • My pain is high up behind the ribs and in the centre sometimes lower down as well as in my back. Pain in breast bone too.

  • Could well be GERD, have you checked that out yet?

  • What is GERD? And can it cause my symptoms? The pain is upper right and hurts my diaphram on the right and middle.


  • I have known a couple of people to have G.E.R.D and thought is was something like cancer etc, so it can be pretty alarming, pain in the middle suggests stomach/ reflex issues, the liver is on the right. Many people with cirrhosis dont even know they have it, they feel nothing alot of the time.

    My boss had G.E.R.D and he thought it was his heart, his pain was on the middle, left and his back, Even though its reflux from the stomach, i dont see why it couldnt go to the right too.

  • Thanks it could be Gerd I just didnt know it could have such severe symptoms like flu, fainting and weight loss. It sounds weird but I also had a lot of itching on my upper middle abdomen before the pain got bad.

    I must ask, how do people find out they have cirrhosis if they have no symptoms?

    Im finally seeing a specialist tomorrow so fingers crossed he helps me.

  • The cirrhosis itch is a whole new level! you would be scratching your skin off. Its usually found on routine tests for other things, until it is pretty advanced this isnt many symptoms. The liver only needs about 20% of its cells to work.

    Gastro issues can cause alot of problems, and yes they can make you feel faint and ill without much in the way of pain. You have something going on, but i doubt its end stage liver disease.

    Only a FIbroscan can give you a better picture. Mine found a little bit of fat above the norm after a 20 year drinker career, so I got off lightly really. I went to the London Clinic for mine last month, cost Β£410 with a consultation and blood tests.

  • Hi, I'm glad your fibro scan didn't show much. May I ask why you had it done? Did you have symptoms?

    I'm hoping I can get a fibroscan. I think they do it at Derriford in Plymouth where I live. Not sure I can afford private but the private hospital I'm going to works with Derriford and they can refer me to have it done on the NHS.

    20 years is a long while! My weekends out were more over ten years. We prefer more sedate weekends now, we still dress up but just go for a meal and one cider. I feel sick when I think of the amount we used to drink on nights out. I could slap my younger self! Even tho most people have done it. Even if they find my liver is OK I've learnt a lot here and will be having words with my friends who still go out nearly every weekend.

  • 20 years of 2 or 3 times a week used to take months off etc. Yes have words with your friends, they should be getting Fibroscans too .

    i got ill after a couple of binges during the world cup last year, havent drank since. A couple of doctors think it may have been Pancreatitis . My liver has come up fine everytime. just a little fat

    Im pretty actively against alcohol now I know what it can do to you, i was on radio 5 live the other night, i have posted the link.

  • Ah that's great you were on the radio :-) I definitely want to campaign against how accepted it is as normal for young people to go out on benders every weekend. I guess the reasoning behind it is that alcoholics wake up and drink every day for years on end the same amount many drink on an average night out, so people think just doing it one night a week is OK. That's how I thought of it anyway.

    I've never had pancreatitis but know it is a warning sign of drinking too much. Glad you're better now and all the wiser for it :-)

  • OK well I just saw the consultant and he is sure my liver is fine. I got a bit upset as he didn't have any answers for my symptoms but I managed to convince him to do a fibroscan in a couple of weeks. He says it won't show anything though as my ultrasound is fine but is just doing it to put my mind at rest. He is also repeating liver function tests. Says there's nothing else he can do and if my tests are normal I will have to accept my liver is OK. He said in his 20 year career, 98% of liver disease does show up on LFTs, especially end stage. I'm relieved but also a bit confused as I know my body. He also didn't seem alarmed about my severe weight loss since Dec which started wheb i became exessively thirsty & started getting very cloudy brain and slurred speech. Said I need to change my diet but I told him I always eat well and am eating even more now to put weight on. But still losing weight.

    So on one hand I am reassured as he is a liver specialist and must've seen a lot but on the other hand his explanation for my weight loss doesn't make sense which isn't reassuring.

    Anyway thanks for all yr advice :-)

  • Oh how frustrating for you. Have a look at some of the posts by s justme.. She had some similar symptoms but not exactly the same as yours. So what now?back to docs I hope?

  • Well my GP won't do anymore now I've seen consultant & even he was telling me my liver is fine. He said he is very impressed with the amount of tests my gp has done as they've done his work for him. Said my LFTs are consistently spot on. They will prob send me to a shrink next as they're starting to treat me like the 'neurotic liver girl'. I do feel nuts but that's reactive to being ill so long and having no answers. I have actually referred myself to a counsellor as am not coping with my symptoms. Its so odd when you have symptoms of liver issues and Drs just dismiss it. I'm not imagining all this, I was very happy and had lots of fun plans before I got ill and have better things to be doing than laying around unable to do much without feeling very unwell & skulking around my gp for months on end lol I will be having more bloods but will have to wait for the consultants letter to get to my gp to do them on the NHS. Then the fibroscan. I think I need to wait for the outcome of those tests before working out what to do next. The only other thing in the area of my pain is pancreas as pain started in the middle to left with itching there before affecting the right side.

    I've been chatting to just me.


  • Ok. I hope you feel better soon. Please keep us up to date.

  • Mandy, its a good thing the liver doctor is happy! I was treated the same as you and they were trying to pack me off to a head doctor. I did try to convince myself it was in my head, but the truth was, it wasnt! It was my liver doctor who suggested that I had some moderate Pancreatitis and by the time i went to the doctor for bloods 3 weeks later most of the evidence was gone, of course it was a good thing that my bloods were good. But i was ill for 5 months dealing with the aftermath of the Pancreatitis and a very annoyed digestive system.

    The problem with bowels and stomach is they wont show much in the blood if they are irritated. If you feeling bad you have every right to go to the doctors, dont be fobbed off by "its in your head" suggestions, i now know mine wasnt at all. Keep pushing if you having issues.

  • Thanks for your encouragement. I feel so unwell, feel like ive had flu for 6 monthd and still losing lots of weight and just can't believe no ones taking it seriously. I'm almost bed bound with it. Maybe it is my pancreas after all as the pain started in the upper middle and left before affecting the upper right too. Lots of itching just on that area too. Plus the pain began after a birthday party when i'd had a few cocktails. No pancreas tumors showed on ultrasound but I'm wondering whether to push for a CT scan as heard its hard to get a clear pancreas ultrasound. But then I have the same probs, trying to get a Dr to refer me for a CT. I wish you could just book one yourself, I know there's something very wrong.

    anyway thanks for all your advice x

  • I really think you should go back to docs but instead of focusing on liver ask what else it could be? Good luck

  • Yeah I had hoped the hepto would consider other things but he didn't really seem interested lol I saw my GP again today as so unwell but said he can't do anything until he gets the specialist report and suggestions. The specialist was useless tho and will only suggest they repeat the basic bloods yet again. I dont know why they keep repeating the same basic blood tests instead of investigating further. At least I'm getting the fibro scan but I had to push to even get that. Its so bizarre. My mums friend is a Dr and is pushing me to ask for a CT pancreas scan as says ultrasound and blood tests often miss pancreas stuff and that's the only other thing in the area of the pain. I find Drs don't like patients asking for tests tho so its tricky.

  • I had the same when I saw the specialist.. Nothing,he didn't even examine me.

  • That's appalling and very scary. They are supposed to be professionals. I was particularly annoyed as had to pay nearly Β£200 and really expected a specialist to have much more knowledge and insight than he did.

  • Mandy, Did you have your fibroscan yet? If so, what were the results? I had elevated ALT and AST liver enzymes that were discovered upon testing after a severe brain injury caused by an accident at home about a year ago. I've been tested for everything under the moon, and the liver ultrasound found moderate to severe fatty liver....everything else totally normal. I am a recovering alcoholic and haven't had a drink in about 8 years. My doctor assured me that my ALT and AST elevations are absolutely not related to my alcoholism. My liver enzymes came down to normal within about 3 months. I stopped taking a potentially dangerous medication I had just started a couple of weeks before my fall, that can raise liver enzymes and I also started a totally new diet and exercise routine. I like to refer to it as my "lifestyle change." I just had another liver ultrasound (a year after all of this was discovered) and my liver has gone from moderate/severe fatty liver to moderate, so luckily, it is getting better, but will probably take a couple more years to be a totally "normal liver" with regards to the fat in it. I have lost 60 pounds and am now at a healthy weight of 130 pounds at 5feet / 5 inches. That's a bmi of just under 22.0. I have had lots of questions along the way and have had some problems getting answers from various doctors as well. I have continued to push for answers and have been encouraged to stay away from Dr. Google, as he can often scare us to death, and we have no idea who has posted the information found on the internet. Just some advice from a very nervous Nellie! I hope you find out what is going on so you can feel better! I'll keep you in my thoughts and prayers. I don't know what your weight is, but I will tell you that "fatty liver" can cause an array of physical ailments.....from pain, to itching, to swelling, to being groggy to being puffy, lethargic and uncomfortable. However, your liver would have shown the fat very easily if you had that, now that I reflect on what you've written. Have you been tested for a gluten intolerance or a dairy intolerance? These two things can definitely cause major digestive discomfort and loss of weight. Just a thought.... Please let us know what you find out! Robin

  • Hi thanks for your lovely response. I am glad your livee is improving! Such a relief ☺

    My fibroscan is this Friday altho I had an upper abdomen, brain and neck MRI last week (done on my own steam and finances) and that was normal too aoart from polycystic ovaries. The consultant says its nor my liver but us doing the fibroscan cuz I insisted. My very scary neuro symptoms have been getting worse & the Dr I saw in London said I must get my GP to refer me to a neurologist as well as a gastrologist. I won't hold my breath tho.

    Anyway I will let u know my fibro results when I get them. Take care x

  • sound similar! diagnosed with Hep E., tests all clear but told i am still showing symptoms, i realise that it is hard but you have to try to relax & be positive. i have a lot of the symptoms you are showing & find that gentle exercise, relaxation, positive thinking & hypnosis(not for everyone & not sure if this is wise in your condition-ask Dr) has helped a lot. Paul McKenna's new book 3 things that will change your destiny today! has been a great help. i have been off work for over month with this & sighed off for another month! it will all take time but by relaxing you are giving your body time to heal. apart from a spiromtry test soon i feel that i have been left to fight this(i have been given Gastro-ristant capsules though). i know its not much help but self-help seems to be the way things are going & you have to try to look after yourself. have you thought of support groups?

  • Hi thanks for your reply :)

    I'm sorry you are unwell.

    Thanks for the book suggestion, will look it up. I've been reading The Secret a lot & doing meditations.

    I had my fibro scan today, all fine. In fact on the chart it was right at the beginning of th green zone (and there are three more zones after that: yellow, orange and red with red being serious damage).

    Its a relief but I've stopped worrying about my liver now. I saw my uncles GP in London as my GPS have stopped trying to find the cause of my illness & weight loss which isnt hekping my stress levels. She is more concerned with my lymph nodes being swollen in my neck for 9 months & not going down despite lots of antibiotics. She says all the areas I'm getting pain & itching (including my stomach) is part of the lymphatic system. So I'm waiting to see a hematologist now. All private aa my nhs GPs seem to hsve washed their hands of me. Trying not to worry about that now lol but you're right, relaxing is so important even tho so difficult when you're getting worse & your Drs aren't helping & you're worried about affording private help.

    I hope you get well soon x

  • good hear about fibro scan -power of positive thinking! this is the main idea-you need to stay positive-great to hear your reading the secret-great book-meditation & hypnosis has been a great benefit to me & i feel better today than i have for months-not taken gastro capsule as had a bit of blood(think it was) when coughing-seems to be fine today! try to take a little exercise(i make sure i go for walks every day) & listen to what body is trying to tell you-you know your body better than any Dr! we all need to be positive & help ourselves because no one else will, espec.these days! try not to worry as worrying makes it worse(easier said than done i know) & meditation will help with this.

  • Hi Mandy28, Good to hear your fibroscan went well. What was the reading do you know? Did you ever get a copy of your blood test results? Very good news not your liver though :-)

  • Fibroscan was 3 which gave me a score of F0 (the lowest score zone possiblepossible). You can find the coloured fibroscan score charts on Google. Mine was in the dark green zone.

    Haven't got blood results yet hoping to get print off soon.

  • Sounds pretty conclusive that your illness/symptoms are not caused by liver disease. Back to square one re a diagnosis.

  • Maybe request a set of CA biomarkers to be done. GP may be amenable as a blood test so not expensive but may be another one to tick off the list to put your mind at rest.

    Take care.


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