Liver pain for nearly 20 years but still no diagnosis!!!!

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Hi 25 years ago I joined the army the parachute regiment! My first posting was Kenya in 1992 we were given malaria meds lariam on a trial basis but didn't know it!!! All was OK whilst in the military however on leaving the army at the end of 94 I started feeling unwell just generally feeling poorly! So obviously off to the docs this went on for a year or so and then over night the feeling went, so all was OK again for 6 months or so, doctors thought it was depression or some sought of post viral syndrome! Again symptoms came back foul taste in mouth, dull pain in liver area and again feeling generally unwell! I could work but I really struggled!! Fast forward 20 years and I've had many of these what I call flare ups with many symptoms ranging from bowl problems to the obvious anxiety symptoms but one thing that stays is this pain in my liver area which is always together with the foul taste in my mouth! I've been more unwell than well and generally life has been difficult to say the least!!! My bloods have always been good but my cholesterol has always been very high! And my last two ultra sounds have shown my liver to be OK but my spleen is Enlarged! They won't do a biopsy because my bloods are good! I'm pretty much convinced Im suffering from quite serious liver damage and feel I am being let down seriously by my doctors all of them! You read that early diagnosis is so important but they won't do a liver biopsy unless your bloods are wrong! Then you read that your liver can function perfectly with only %25 of it working!!! It seems to me there waiting for my liver problem to get to the point of no return before they will do anything! Crazy messed up system! Can anyone relate to this? Any advice? I'm booked in for a Fibroscan next week!!

So hopefully I will get answers from that!

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  • Posted

    The fibroscan should give you a good idea of what is going on if liver related. IBS? Gastritis? Those could be some other problems in the absence of liver disease.
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    • Posted

      I hope so i really do! Just have a serious gut feeling and my symptoms seem to be progressing in subtle ways at the moment I have the usual pain in the liver area which I can now feel in my back area under my right shoulder blade!! I also have areas of itchy skin that have been there for months!! My legs can sometimes feel acke especially my calf muscles! This comes and goes along with the horid taste and smell in my mouth, and lastly I have a really itchy rash in the top crack of my Bum that isn't responding to any cream🤕 so you can see why I'm concerned I did a lot of partying in the mid 90s and I honesty believe the malaria drug damaged my liver in some way as never been a massive drinker and don't touch it anymore! And never will!!!! Going private for the Fibroscan next Thursday and have a horrible feeling that scan will change my life forever! On a positive note I sill feel pretty healthy and go running a couple of days a week and have started to eat as though it is a liver problem! Fingers crossed! 🙏

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    • Posted

      Living healthy should help if it is liver related or if it is any other health problem for that matter. I am confident you fibroscan will be ok. Have you ever had an EGD done?
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    • Posted

      Yes about 15 years ago and they said I had some mild duodenum inflamation and that all my issues were due to binge drinking but as I said before I've never been a massive drinker and the liver pain started before the drinking!!!! I also have had the camera up the other way and they also said mild inflamation that was about 5 years ago when I had serious bowl problems!! I really do think when you get tarnished with the word anxiety they stop seeing your symptoms but my symptoms are now starting to manifest visually! Really think this scan will give me the answers that I need as 20 years is along time to feel grotty!!!!!

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    • Posted

      Thanks just really need answers as 20 years is a long time to feel unwell takes it toll on not only you but the family as well I'm sure my lot have had enough of me! Without your health you haven't got anything!!!!

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    • Posted

      I am going through something similar. It has been going on for about 6 months. Weakness, muscle pain, numbness, forgetfulness, flatulence, high cholesterol, high ALT. Ultrasounds showed fatty liver, CAT scan showed no abnormalities, fibroscan was 6.9kpa which is mild fibrosis (f1). I am waiting on results of liver biopsy. As dr wanted to see why ALT was persistently high after 6 months. I have had to be absent from work a few times. Yes! It takes its toll on family and all. I cannot walk or jog like I used to. On some measures I am better than six months ago. The liver pain never really bothered me. From what I read from you, it seems you may have something else going on.
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    • Posted

      I feel for you mate how old are you if you don't mind me asking and have you ever done the alcohol thing? The muscle aches are only in my legs calf muscles mainly!! The liver pain is never intolerable but just I know it's there and it gets me down!!! I have had bouts of horrendous flatulence as well on some days I could seriously fart all day and the smell was horrendous but always smells the same no matter what I ate the smell would be the same! Strange! Sorry to be so graffic but symptoms are symptoms and they need to be told! But like all my other symptoms they come and go but one thing remains constant the pain in my liver and the foul taste and smell in my mouth! You might be right about something else going on or maybe my liver was damaged in a different way to yours I'm convinced mine was damaged by the malaria drug I was given years ago it has subsequently been astablish ed that the drug is neuro toxic and really not good for and as I'm sure you know the liver is a very large filter! Have you had any skin problems?

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    • Posted

      No skin problems. I drank during my university years. At that time it was about 3 beers a day 3 to 4 days a week. Was also overweight (5'5" for 191lbs and reached a max of 200lbs about 7 months ago). I do not drink at all anymore and I am eating as if I have liver disease. On the past 6 months I have lost about 22 pounds. I am 41 years old.

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    • Posted

      Sounds similar to me I'm 43 and binge drank in my late 20s but I did have the liver pain then but didn't really know what it was I remember asking my friends if they were getting any pain in the liver area and them all saying no!!!! Gave up the serious weekend drinking at 32 when I met my misses and have only done a little social drinking definitly got worse when I drank so now drink nothing at all!! Do you do any exercise at all? The reason I ask is go running twice a week and I hate every second of it but it makes all the muscle pain go for a day or so and I almost feel normal!! And believe me before I run I feel awful but after the shower I feel mega!!!! I know it's hard but it seriously works give it a go!

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  • Posted

    Hi, I'm having similar issues to you so I'd be very interested to see what the outcome of your tests/situation is. I'm 38 years old and up until 2004/2005 I was in perfect health. Since then I developed a whole range of symptoms. Pain under bottom right rib, quite bad bloating with stomach extended. It hurts my stomach when I relax and breath out, itchy hands (intense itching mainly after certain foods. I think large quantities of protein makes it worse, meat), I have no appetite, red rash on forehead, excessive bleeding from gums and bad breath, very dark and cloudy urine (mainly in the morning), peeling fingertips, any Cuts or bruises take ages to heal, an intolerance for alcohol. I used to drink frequently on night out prior to 2005 with no issues. I've somehow developed allergic rhinitis (hayfever)... Never had before. Weight loss. I've lost about 1 stone in weight and muscle mass has reduced significantly (I'm 6'2", 13 stone down to 12 stone). My hair is starting to fall out (not severe), I get brain fog occasionally. I'm tired all the time. To quote the GP's and consultants, they say I've had extensive testing carried out and nothing has been found. Some have said health anxiety, some have said IBS. I've reluctantly been on anti depressants and I've seen a psychologist which had no affect. I'm having great difficulty convincing the health professionals that something serious is wrong. I believe I have a serious disease probably liver disease or hepatitis C. However all the test results suggests otherwise. Please see list of tests below:-

    Full sexual health screening x3 (negative),

    Hepatitis C & B, private (negative)

    Full hepatitis, NHS (negative)

    Ultrasound x3 (normal)

    Full body MRI, private (normal)

    Endoscopy (normal)

    Endoscopy with internal ultrasound (normal)

    Colonoscopy (normal)

    Bacterial overgrowth breath test (normal)

    Celiac test (normal)

    Food allergy (normal)

    Psychologist + antidepressants (no improvement)

    HIDA scan (irregular result)

    Of all the tests only the HIDA scan came out irregular. My ejection % rate was 33%. The consult told me anything less than 45% they recommend having the gallbladder removed. Although she claimed it did not explain most of my symptoms. I got a second opinion off a gastroenterologist who believes HIDA scans are NOT reliable. Naturally I didn't have my gallbladder removed. I felt this did not explain my poor health. I've exhausted all avenues and I don't know where to turn next. I've though about looking into kidney issues or extra pulmonary TB, but I'm clutching at straw. I'm having to research everything. I feel like the GP's and consultants think this is all in my head and that I'm wasting everyone's time. This is making me furious. I'm rapidly losing confidence in my GP's. I don't know what to do. This whole situation has gone on for over 10 years. It's affecting my quality of life. My family have had enough. Any advice would be much appreciated.

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    • Posted

      Hi Paul it sounds very much like my situation except mines been going on for 20 years!!! You need to go with your gut instinct as you know your own body! What you need is a liver biopsy same as me because I'm convinced it's my liver! And by the sounds of it so are you! However if your bloods and scan are good then they will never do it! So the Fibroscan is where I'm going as this will tell you if there is any fibrosis or worse! I'm booked in for this Thursday so will let you know how it goes! What the doctors don't tell you for some people the liver can appear in the bloods and the ultrasounds to work perfectly normal as the liver can function pretty well with %75 percent of it damaged! I'm sure you know this which is why I think the diagnosis process is rubbish! As it's well documented that early diagnosis for liver problems is vital for treatment! Crazy!! I've also been told I have health anxiety and gad! Which I've never believed to be the case, feeling unwell causes my anxiety and the unwellness came before the anxiety and that for me speaks volumes! We now are own bodies so change your doctor until your happy 😊

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    • Posted

      Thanks for the advice. I've been looking into these fibroscans and they appear to be quite accurate vs a liver biopsy and less invasive with no risk. I'm tempted to book myself in for one also but I'm having difficulty finding where they are available.

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    • Posted

      Hi Paul I have to say it was a good experience all round lovely people and a bloody good result for me! The scores go from 1_75 one being a good healthy liver. And 75 obviouslly not! My score was 4. 1 so I'm obviously very happy and more importantly my liver has no issues!!! So this doesn't give me any answers to the symptoms I suffer but tells me my it's not my liver!!!!

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    • Posted

      Hi Simom, since my last post I've also now had a fibroscan scan and the result came out normal. The radiologist did the test 3 times. Results were all around 3.0 kpa so I think I've been barking up the wrong tree with the liver. I was wondering as your symptoms still remain what evenues you were planning to explore next?

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    • Posted

      Hi Paul that's great news mate!

      I think just trying to keep fit eat well and try to be happy as not being happy plays a massive part of my symptoms anxiety and low mood need to be kept well away from me as they always lead me down the wrong road to feeling unwell!!! The malaria drug I believe has played a massive part into my symptoms however I have just received a letter from my GP and I I have been told that I am going to be assessed by the veterans association within six months which is good news and a step in the right direction!!! I have also just received an appointment for a Ultra sound on the liver kidneys etc

      I still have the pains but the Fibroscan for me was great reassurance! How about you going forward?

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    • Posted

      I'm unsure what to do next really. I'm happy with the result. I've pretty much had every test possible on my liver so I think it's time to rule that one out, but obviously regarding my symptoms nothing has changed. One thing that I've noticed is after i work out I stink of bleach. I've noticed this for about 2 years (never had before). I've been doing some research and this could be due to an underlying kidney issue. I did have a kidney function test done earlier this year and I had ultra sound on my kidney about 5 years ago. At that time everything was fine. I could have those tests done again to see if there's any change. I know my GP won't be happy. I think they think I'm crazy. I won't give up though until I find out what's going on.

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    • Posted

      You know your own body so stick with it bud my doctors think the same about me I can see it in her face but you must persist as I'm sure you've read the stories where they miss diagnose! Have they ever mentioned all your symptoms could be anxiety? Health anxiety

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    • Posted

      They started off by saying health anxiety. I went to see a psychologist who specialises in something called mindfulness. I had 10 sessions. It was useful to have. It gives you the skills to control your own thoughts or basically empty your head. Taking time out every day helps but to be honest it made no difference to my symptoms. Like you said in an earlier post feeling unwell came before the symptoms. So if I am stressed its because of my symptoms. From my experience as soon as anxiety is mentioned they latch on to it. My sysmptoms don't seem to matter any more. I try to tell the health professionals that my symptoms aren't vague. They're quite specific. So when they try to hang anxiety and IBS around my neck you can imagine my frustration. The fact is they don't have a clue. In that respect on my own. If I don't figure this out no one else will. I think next up for me is a comprehensive check on kidney's.

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    • Posted

      Sounds so similar to my situation! That word non specific really winds me up as I've heard so many doctors say that about my pains!!! One things for sure there not non specific to me!! Roughly two months ago I payed private to see a liver/bowl specialist and he didn't think my symptoms were due to my liver! He thought it was my colon and advised me to go on a fibre free diet! I did this and anitially it seemed to help however gave me really bad constipation!! Not funny! Slowly the symptoms came back so perhaps that's something you should try! I do sometimes wonder if this could be a inflamation problem but nothing seams to show up in the bloods! But the two camera investigations have shown mild inflamation in my bowl and in my duodenum! Or could it been a ammune system problem? Just so many avenues! One thing I do know is that the malaria drug lariam started all this off 20 years ago!! Have you ever been given any tropical disease meds?

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    • Posted

      I don't think I've been given any tropical meds. I'm pretty sure I haven't. I went to Tenerife for a week in 2004. Not more than an hour after arriving I couldn't stand up straight due to severe back pain. The next morning I called local Spanish doctor who came to the hotel. She told me I had a kidney infection and gave me a course of antibiotics for 1 week. I have no knowledge of this antibiotic (which type). Years later I read an article on the net whereby certain antibiotics had reportedly caused long term kidney damage. I'm probably putting 1 and 1 together and getting 5, but it's been at the back of my mind. This is around the time everything started to change. I've not been right since roughly that period. I've also been researching something called extra pulmonary tb which can affect any organ other than the lungs. It's quite rare apparently but im wondering whether to get tested for this. I already mentioned this to my GP and my suggestion was shot down immediately. I'd probably have to go private

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