Advice: Hey everyone, Hope you can help... - British Liver Trust

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Advice

Ronin990
Ronin990

Hey everyone,

Hope you can help, not sure what to do.

Been having symptoms for about 9 months. Started with mild chest pain and stomach pain. Went to docs a few weeks later and had a blood test (LFTs, Kidney, Pancreas) and Ultrasound that was all fine. Doc put it down to IBS. Went back a few weeks later with fatigue and more chest pain and doc ran more blood tests (diabetes, Iron, CBC, Thyroid, LFTs, Chlolesterol) and an ECG and all fine.

Refereed me to an internist in the new year to look in to chest pain and other body aches. She ran a Holter, Echocardiogram, chest x-ray which were all fine. She also ran another blood test and checked less common things like B12, Cortisol, Muscle enzymes and electrolytes which were all fine. I've also had a CRP and Homocyestine (follow up to b12) blood test that are normal.

Since then things improved for a while but now I have varicose veins popping up on my legs which can be painful and itchy (doc prescribed compression socks), stomach aches have returned and I get on and off dizziness and an inner sense of shakiness (like I have the shakes but on the inside). I also get heart palpitations and this kind of pressure on my temple on the right side where a vein is. It's like my blood flow is sluggish everywhere all of a sudden.

I've been back to the docs with the last of the symptoms but they think a lot of it is down to anxiety. I have had an extreme amount of anxiety about all this that is for sure. I think partly because some of the symptoms seemed to be set off by alcohol and now I have pain on the upper right side of my abdomen (kind of almost in the centre). I mentioned to the doc the last couple of times I went in that I was worried it was my liver but after looking at my test results and doing an exam on me shes certain it's not my liver.

I'm considering going in for a private Fibroscan as its the only way to be sure the Liver is ok (It's only $125, I'm a Brit in Canada). I've read blood tests can miss Liver disease and an Ultrasound is only good at picking up late stage problems. (However I've read mixed things about accuracy of Ultrasound for that as although it can miss certain things it can usually pick up something especially if it's bad enough to be causing symptoms?).

About me - I'm male, 32, normal weight, no underlying health issues I know of. Regular excersie whole life, non-smoker. Alcohol consumption - before symtoms started about 10 drinks a week (sometimes less, sometimes more). Last 9 months basically have not drunk. Back in my Uni days and early 20s I binge drank a lot but as I got older less and less like a lot of people.

Newest symptom is joint pain. I'm terrified something is wrong with my liver but every test I've had says otherwise. Several doctors have given me a physical and I've researched online (not always the best idea) if any of my other blood tests would be raised in Liver Disease. CRP (C-reactive protein) for instance is nearly always raised in CLD as is Homoscyetine, I would have thought my electrolytes would be off in CLD too.

I'm at a point where it's hard to know what is anxiety and what is real. Do you think I should do the Fibroscan? My doctor has said don't do it, don't waste your money. I might go back one more time to see her before I do. I'm struggling to think what else it could be. Over the last few months I've gone through so many things. So many thoughts and emotions. I want this to end or to deal with it.

Any thoughts or suggestions appreciated.

Thank you

17 Replies
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Hi ronin, I think your doctor right don't waste your money. You do seem to be working yourself up I can tell that just from what you typed your making sure you haven't missed anything out. But your gp seems confident nothing wrong internally seems you have been through a lot of tests. Anxiety is something I have suffered with and it does feel like the world caving in around you. Try and get some support first for your anxiety and I am sure everything else will settle down xx

Ronin990
Ronin990 in reply to jojokarak

Thanks for your kind words. Is it not worth doing the Fibroscan to put my mind at ease? One other sign has been mild weight loss, in my arms and legs. Yet if anything I'm more hungry and eating more than before. I read that could be uncontrolled diabetes but I would have thought something would have shown in tests?

I am taking steps to deal with the worry as well. Thankyou!

Ron,

there seems to be a kind of anxiety that becomes symptomatic mimicking what the patient believes to be symptoms of CLD. This kind of anxiety is to be found more frequently than one would expect.

If you read through liver disease related message boards, you will find tons of examples for it,- perfectly healthy people who stubbornly believe they have liver disease. Usually people with a drinking history so innocent it would not seem worth to raise an eyebrow at, but with a sense of guilt so strong it becomes symptomatic.

I sometimes wonder why this has not been described yet by the scholarly community.

Please do not worry. Try to identify the cause of your problem. It most certainly is not alcohol or liver disease related.

Good luck,

P.

Thanks, I do understand reading about all the symptoms makes one think they have them. I've tried to put that to the front of my mind but it never seems to last long.

I have loads of guilt over my drinking now even though before I got the symptoms I never thought twice about it. My drinking was pretty normal but I had some crazy partying / bineging in my youth. I worry about that.

My upset stomach and chest pain also seem to come on with drinking (the few times I have the last year). Last time I had a couple too many my heart was racing the next morning. This all makes me think it is liver related.

Clearly all the investigations show it is not but deep down I feel like something is wrong. Maybe it's not liver related but something else multiplied by 10 because of my anxiety.

I assume you also think I should not do a Fibroscan? What's the harm in doing one and it being negative? (Unless it was a borderline result that sent my head spinning).

I'm sorry to take up time on the forum when other people have more serious problems. Regardless of what happens I don't really drink any more. That's good!

Ron,

you can do all the tests and scans you wish, as long as you do not work on the underlying cause of your anxiety, your symptoms will not go away. And the underlying cause seems definitely not to be liver-related.

As far as your alcohol consumption is concerned. It was never a big deal, it seems, and you are simply too young for having caused yourself any damage with your ways. You've been drunk at times during your university days? Go on and sin no more, son. No big deal. Everybody has done so.

They say that alcohol-related damage needs at least ten years of >80 g/daily ethanol intake to cause significant damage to the liver of a normal male. In my case it took 20+ years of >200 g/daily consumption plus 15 years of 'normal' abuse for my liver to give up the ghost, and somehow, being abstinent I am still here. And I do have an additional condition of the liver (20% of alcoholic cirrhosis cases have multifactorial causes).

There is no need to be anxious. Supposed you have liver disease, do you think it will get any better if you are anxious? ALD has no other treatment than the elimination of the cause, just as is the case with any other LD. Do not drink and be kind to your liver. HE, ascites, bleeds and other PHT-related complications are to be treated symptomatically when they arise.

You are young, and anxiety is taking away any quality of life from you. You will be dead more sooner than later as all of us will be. You have been unborn much longer than you will live. Don't spoil the time you are given here with anxiety. Seek treatment for the underlying cause which is not liver-related, and if it were, you are doing all the right things already.

The Arabs use to say: The coward dies a thousand deaths while the courageous dies only once.

You will be fine. Don't be liverish. Good luck,

P.

Thanks man. Good words about the anxiety. I know a lot of this. My wife tells me all the time.

My drinking was a little heavier than just uni days. More like binge drinking once a week, sometimes twice a week through a good chunk of my 20s. London life really. Now I'm in Canada and the last 3 years have been a lot less. I've just been so terrified I pushed it a bit too much for too long.

This probably all seems trival to someone like you.

Sometimes I knock myself out of it but then some other thing happens.

In the night if I get up to go pee my heart is beating fast for a few mins. That and my muscle wasting makes me think there is something wrong with my circulation or glucose level. So either diabetes, liver or something else.

I'll get there. Just looking for answers and advice.

Saw my GP again and although she thinks it's not my liver she said, ok do the test. She's hoping it will help me move on and deal with the anixiety.

My fibroscan is next Friday. Wish me luck. I'm terrified of the results but either way I need to do it. My symptoms are too much to ignore.

You say your symptoms are too much to ignore. But fibroscan is a diagnostic tool, it is not a therapeutic device. Fibroscan so far is not known to heal damaged livers. It may, in the best of cases, help to ease an anxious mind.

Nevertheless, once anxiety has become symptomatic, no negative result of any tool or procedure will cure the symptoms.

You probably will then put the machine's results in question, or doubt of the operator's skills, or get messed up with the different scales to interpret results according to the specific suggested liver disesase present.

As long as the cause of your anxiety is not identified, you will keep distrusting of your doctors.

That is the nature of the beast. I have seen many cases, on many health related message boards. Cancer scare, liver scare. It would probably save the Health Care system quite some money and ressources, if a specific protocol for symptomatic anxiety was established.

Good luck,

P.

They are too much to ignore in that I feel I need to check every avenue. In that if something was wrong I need to be referred, so I can be monitored and get advice. (I know before you mentioned the main treatments are not drinking, and being healthy which I am doing but still). I know it won't heal anything.

I will not put the machine in to question, I will breathe a huge sigh of relief if it is fine. Although either way I will have to deal with my anxiety, I know that. I have signed up for some courses and my doctor is helping with it too. I am totally open to dealing with the anxiety and it all (or mostly) being down to that.

I hope for the love of god that you and my doctor are right. I really really do.

9.0kpa - F2. Have I caught this just in time? I will of course seek the advice of my GP/ heptologist. I have good bloods and ultrasound so I'm optimistic. Hopefully I will get tested for Hep B/C etc to make sure no further damage is being caused but I assume my original blood test would have been off for that.

Other than not drinking alcohol, what are good things to do for my liver? No sugar, plenty of healthy food as usual and exercise, what else?

Hello Ron,

I am not too familiar with fibroscan, but F2 is a stage that, depending on the cause might be kept in check.

Low salt diet, no NSAIDs, I have been advised. I never eat out, or processed food (eccept for ice-cream). I cook for myself. Eat small servings. The liver loves coffee, studies and my hep say. I was immunized against hepatitis B and pneumoccus, ordered to get a flu shot every autumn, but I am not F2, so maybe it is different for you. Daily exercise.

You should find out what is causing the stiffness of your liver. Maybe it is not, or only partially alcohol-related.

Do you plan to live a life of chastity for the rest of your days? This might not hurt your liver. On the other hand, I have not found a single study claiming that fornication was overtly harmful for the liver. As with anything else: Semper modum serva.

Happy for you that it is 'only' 9 kpa. Good luck,

P.

Thanks, I think it's touch and go as to whether I've reached the point of no return now. It depends on the cause, so we will have to see. My doctor ordered a hepatitis blood check while we wait for my referral to a specialist.

I used to drink a coke a day for many years which I have now learned is bad for the liver. I don't know if part of my cause is NASH.

My referral could take 6 months, ugh. Other than an uber good diet there is not much else to do right now.

One thing I'm wondering, if you start to get symptoms of liver disease, I assume you are past the point of no return?

I'm hoping this has some kind of good resolution. I have a wife and a 1 year old daughter and this is causing us a lot of stress.

I have been facing same since a year. Woke up one day with, distended stomach and weakness. Since then lost most of muscles, strength in legs and arms. Legs and arms have become thin and weak compared to earlier. Loss of sex drive was the main reason to worry. I tried all possible means of checking infection or organ damage. MRI of spine showed posterior buldging due to increase weight. I was shocked after knowing this reason as I have been very muscular and healthy naturaly. Now I have abused alcohol for like 9-10 years (sometimes a whole bottle would not suffice) with bad food habits and smoking (20 smokes a day). I lost my mom due to tuberculosis in 2016 and my issues started in late 2016. Since last year, I've done numerous tests and initially was diagnosed with b12 deficiency and anemia. Have treated the b-12 and anemia courses. Still am anemic but recovering. Still couldn't find the reason for deficiency as usually I have good digestion and never had such issues. I did chest x-ray abdomen CT and many other blood work which came normal except IGRA for TB came positive. Doctors ( I have consulted so many I don't have count) denied the possibility of active TB after other observations and gave me supplements to recover my strength and libido. Have been unsuccessful and due to this enormous amount of issue, I have been depressed and under severe anxiety, got ibs like symtoms. Not to say took meds for that as well. I've been taking liv-52 (liver tonic) medicine lately and that seemed to help getting my inner strength back to an extent which makes me think about liver again. Am about to lose hope of ever getting the same old me back which I was a year ago. I'm 29 now and about to get married. Not to mention that it has affected the relationship as well. I have quit smoking and alcohol completly. Just want to get the old me. Any help or suggestion will be appreciated.

Have you had any red dots petechiae pop up? This can be a sign of elevated blood pressure in the venous system. The fibroscan is well worth it. A good CRP blood test, is a reason to be optimistic as it picks up venous inflammation. I was kind of in the same boat, scans were good, but labs werent for a while. Then they returned back to normal: End of story I had drug induced hepatitis from paracetamol. Umbilical vein caused a herniation and my linea alba was torn. All test came back good, so yes you can be sick and get green lights. It doesn't necessary mean worse case "cirrhosis". There is also something called PAWS, which happens when you quit drinking alcohol or stop toxic insults. Your immune system goes wack for a little and causes the liver more stress. Normally, PAWS shows in an LFT though. Even when your labs are good, it doesn't mean that your liver has fully repaired itself yet. I am almost a year out, took 2 paracetamol for fever, boom symptoms and elevated ALT. Ultrasound, CT were clear the whole time. My liver still needs some recuperation, but fibroscan is now a 4.8, fibrosure = no fibrosis. My issue started with little red dots popping up on my abdomen, arms ect. LFT showed AST in the hundreds, ALT elevated as-well. My blood flow was sluggish, had tachycardia, painful veins in chest, that legs. Normally with sluggish blood flow, your heart will beat faster to maintain adequate blood flow. Do you check your pulse daily? My heart rate is now normal, but was 130 when I was sick. B-12 being good is also a good sing. As your liver processes B-12. You should have folate and magnesium done as-well. I normally post on mdjunction, but saw you were in the same boat that I was in. It does get better when you stop the toxic insult, whether it be alcohol or medications like paracetamol. The liver has little vessels called sinusoids, these vessels bring blood from zone III the center venual to the portal system at zone I. Toxins can knock these sinusoids out, causing increased pressure in the portal system and or liver without it showing up on an ultrasound. That is why there are 3 types of portal hypertension. Pre-sinusoidal, sinusoidal and post-sinusoidal. However, pressure will normally increase your fibroscan number. If you have increased pressure, your fibroscan will be elevated. Also, alcohol damage is rather homogeneous. Fibroscan is a very good test for it, it isnt as good for things like Hep C, where an MRE is the better tool of choice because its damage is heterogeneous. Therefore, I think it is worth-it, this is only my opinion though for what it is worth. Good luck!

Ronin990
Ronin990 in reply to kurtymac

I do have a decent amount of those red spots. Not crazy amount and always had some but seem to have more recently. If I had elevated blood pressure in the Venus system my CRP would be higher. no? I had a holter app on for a day which measures pulse and it was completely normal. I had all my electrolytes done including magnesium and it was normal. Normal, normal!

Fibroscan on Friday, despite my good test results I'm not very optimistic.

I feel like I need a miracle. Wish me luck.

Glad you are having the fibro-scan! I think it is important to trust your gut and do what you have to do . Anxiety, yeah you have it but it doesnt cause all your symptoms. Good luck keep us informed of the results!

Hey Ronin, normally those results will be elevated. However, everybody is different my labs were good as well and I had an umbilical hernia and a linea alba tear. I agree fibroscan is the way to go right now. I still don't feel 100% from when I got sick last year but about 85% so it is a slow process with the damage. I also had the holter and it was normal, but I laid down most of the time because I was so sick. You seem to be taking the right course of action to getting down to the bottom of it. The red dots may just be normal for your body, I started getting many once I hit 30.

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