What next: Hello , I haven’t posted for... - British Liver Trust

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Debs365 profile image
25 Replies

Hello , I haven’t posted for a while but have been reading and educating myself, thanks to all the insight in here!

I had concerns a while back after a history of alcohol abuse, I presented to my gp who labelled me anxious etc as my bloods were ok, but due to knowledge leaned on this site I knew that didn’t mean my symptoms were definitely not my liver. I pushed for a scan and the gp eventually agreed to send me for one to check for gallstones as they believed that’s where my pain was coming from,

This scan in March was all clear for gallstones and also said liver was ok too,, they also tested poo for bowel inflammation, tested blood for celiac etc etc…

The doctor assured me everything was ok and I could drink in moderation etc..I still refrained mostly apart from the odd glass as I was categorically told my liver was fine and it’s all in my head etc..until a night out with my partner, was more of a binge than a glass and next day pain was worse, also nausea dry mouth etc.. this was 2 months ago and I am still unwell to this day constant nausea, tiredness etc, I haven’t had a drink since and will not ever again, whatever is going on with me liver or not it’s obvious not agreeing with me.

My question is (while being aware nobody can diagnose me) just generally feeling this unwell my real worry is hepatitis from that “binge” I have been back to doctor who point blank refuse to do any other tests I have been referred to gastro which will take months and they are trying me on meds etc as they say it is my gut.

Right side just below ribs is where I have the pain, also very noisy digestion, bad stools etc, but for me the daily nausea , lightheaded ness and hot flashes are the worst symptom.

Abs I am absolutely terrified.

Any advice welcome except for going to see GP as they refuse to do anything further regards my liver even with these new daily debilitating symptoms…I wonder if I should present at A&E or wait and hope it all settles down?

Thank you all

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Debs365 profile image
Debs365
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25 Replies
RobTru profile image
RobTru

Hi. I'm new too and sure others have much better advice but from what I've read, could you get a Fibroscan done? I booked one privately today and didn't need a referral

Debs365 profile image
Debs365 in reply to RobTru

Hi RobTru,Thanks for your reply, I would like to get a fibroscan but having done some research I can’t find anywhere even remotely near me that will do this without referral, (I am in Edinburgh)

May I ask where you have booked yours?

RobTru profile image
RobTru in reply to Debs365

That's a pity. I booked mine in Dublin. I live quite near. Shame the doctor won't refer you. You'd imagine he would if you're worried. Sorry I can't be of more help. Awful to have to worry

Bazinga89 profile image
Bazinga89 in reply to Debs365

Hello. I live near Edinburgh as well and I think there is not any clinc where they can do that. Anyway Fibroscan is not 100% accurate and in mostly cases is wrong... I had mine which said huge decomoensated cirrhosis while ct and biopsy says definetely not cirrhosis. Try to calm down and dont do anything by your own becouse it will makes you more sad... liver needs a lot of time to reheal, do for a diet, excercise and definetely stop drinking. Even after 3mths of sober im getting complications but as my consultant says its nothing to worry about its just your liver dont work properly but it needs time to heal...

Positive001 profile image
Positive001

I think by staying off the booze completely, eating healthily, drinking plenty of water and exercising daily, your symptoms will subside. Give your liver a rest for a couple of months then see how you are feeling. Worrying will only add to your symptoms so try to be calm and look after yourself properly. If symptoms persist after that time, see your GP again for possible referrals and scans.Laura.

Debs365 profile image
Debs365 in reply to Positive001

Thank you Laura I really hope you are right.. I have a 1 year old and am terrified at the thought of not being here for her, Take care

Hi Debs

pain under the ribs URQ (upper right quadrant) can be from several things. I've posted before about my gall bladder problems... I get a "sand" not stones... the pain is only present after the sand has gone so, nothing will show on the scan. But if you had that, you would know, the pain is the worst acid stomach you can imagine.

You are doing really well, you have stopped drinking, you are educating yourself (but avoid google, it scared the living daylights out of me :) ). Also, as you were checked for celiac, have you considered trying different foods? my URQ pain first started because of the amounts of fried food, fast food, ready made meals (which seem to be mainly fat, sugar and salt) and a huge intake of anything sweet. Maybe try a gluten free, sugar free and fat free week to see what effect it has???

No matter how quickly you get your gastro appointment, it will seem like a long time, the best way to get through this is to distract your mind, if I start worrying over a pain or a bout of dizziness, my anxiety will try escalate that into the worst thing I can imagine, so I listen to music, remind myself, I am well and do anything to keep me busy..... now within minutes, I am back in control and, every time I beat it, I become stronger than my anxiety.

Once you have been to the gastro unit hopefully they will run bloods for a liver function and do or arrange a fibroscan and it will be very good news.

This forum is a wonderful support system and a place that calmed me (and you, hopefully), if you have questions or need to just chat... everyone I have chatted to here has a wealth of experience and kindness.

Dave

in reply to

Hi Deb's and Dave yes I was thinking about possible intestinal allergy my nephews wife was diagnosed ceialic but turned out on off episodes had bump on intestine and had to give up various foods there's complex conditions easily solved with intestine from diet change like intestine pockets which go inwards I'm not sure what you were drinking but I'd advice you have a colonoscopy I'm allergic to beer can have a bit take care 🤗x

Debs365 profile image
Debs365 in reply to

Thanks, I was drinking a lot mainly wine for many years..that’s why the symptoms and my drinking habits all point to liver of course…hopefully there’s another explanation but I’m pretty concerned there isn’t.. it’s a constant worry but the GP refuses further tests and believe me I’ve tried, so there isn’t much I can do but wait and hope I feel better at some point.Thank you all

For your replies

Smegmer profile image
Smegmer in reply to Debs365

How many Units a week were you drinking?

Debs365 profile image
Debs365 in reply to Smegmer

Embarrassingly A bottle of wine most nights sometimes bottle and a half , stopped while pregnant 1year ago then slowly crept up after I had my daughter and my mother died. the night before all this nausea and worse pain started 2 months ago (the last time I drank) was 2 bottles so a binge (first night out together since having daughter and was told categorically my liver was ok so went a bit overboard) . Have been to docs since many times and they refuse to do tests and are relying on previous tests done 6 months ago (ultrasound and bloods)

I’m at a loss now what to do. And I can’t really afford private tests

Smegmer profile image
Smegmer in reply to Debs365

Well, the Queen Mum used to drink some where around a bottle of wine a day and lived to 101. A Fibroscan would be handy, but the tests you have had so far are not useless, they do them for a reason.

I got ill after a binge and I has Gastritis and a sore Colon, took 18months to feel better. A rise in white blood cells to fight an infection can cause the weak and nausea feelings. A serious Liver issue wouldn't just pop up when you had a binge.

Debs365 profile image
Debs365 in reply to Smegmer

Thank you for your reply,For clarity it didn’t just pop up, I’ve had RUQ pain for almost a year, some itching and bowel problems, things just got a lot worse after this particular binge urging me to stop drinking completely which has been easy, but if anything I’m feeling worse day by day not better which is why I have the concern.

Thank you for taking the time to reply to me, take care

in reply to Smegmer

Please note that 'around a bottle of wine a day' equates to 70 units of alcohol which is well in excess of the government recommendation of no more that 14 units a week.

Trust9

Smegmer profile image
Smegmer in reply to

13% wine would be ~70 units

Debs365 profile image
Debs365 in reply to

Thanks 😞

Smegmer profile image
Smegmer

Stomach and intestine issues can make you feel pretty unwell. Colon is quite often mistaken for the Liver. Have you been checked for H. pylori ?

Debs365 profile image
Debs365 in reply to Smegmer

Yes I have been checked for that was all clear, Thanks for your reply

Hi Debs,

If you are in the UK, you may want to call our nurse helpline on 0800 652 7330 Mon to Fri 10am to 3pm for a chat about your concerns.

Debs365 profile image
Debs365 in reply to

Thank you I will do that , I’ll try tomorrow. Thanks so much

in reply to Debs365

You are welcome :)

mayk19 profile image
mayk19

Really sorry to hear of your concerns. You sound EXACTLY like me. Same Alchahol intake, sometimes for 25 years 25 to 50. I started with pain in right hand side 2 years ago this month. After trips to the docs - all bloods fine, he said muscular/Spinal. But the pain was like nothing i'd had and moves around. So i got proper paranoid about everything. Stopped driving for four/five months and had every scan know to man. CT, CTI (is it with the injection) MRi, Ultrasound, Fibroscan, bloods, urine, and even endoscopy and colonoscopy. At the very start Ultrasound said mild fatty liver - but all bloods and every other scan totally ok.

But the MRi found a spinal issue - and all the docs said my right side pain is from problems in my spine, i've been for physio - and sometimes it does go away, but im crap at doing the exercises.

So this year has been dramatically less drinking, but over my 50 it increased again, and my paranoia of drink related has come back. So..... back to the docs last week - Unrine, bloods and checking again and still maintains muscular.

god knows what the pain really is. But i know i've got to cut out or completely down drinking anyway at my age.

good luck sound like your doing the right things to start with

broomhall79 profile image
broomhall79

Hi debs I just read your post I was wondering that the pain you've been experiencing could be pancreatitis even though am no doctor it's just 1 of many problems that comes with alcohol which I have and it's very painful just drink plenty of water and if you bring any blood up I wouldn't hesitate to ring 999 I hope you get sorted

Amethyst91 profile image
Amethyst91

I have similar issues. Wondering if you found out anything?

arthole profile image
arthole

I have been in the same boat for 5 years now. Bottle of wine a night for 8 years and binges when out on the town lead to RUQ pain and nausea when really bad. I have been told I am fine even though at the beginning I had a very fatty liver and high ALT level! I changed my diet and stopped drinking at home but have difficulty when going out. I have had every test in the book and the specialists have all said there is no issue..... Then my mum died of undiagnosed Cirrhosis in June after complaining for years about the same issues! Go figure! They don’t currently know their a** from their elbow and all research suggests that there are currently really big issues when diagnosing liver disease. I have stopped drinking altogether now.

I say trust your instincts. Stop drinking, eat a healthy liver friendly diet and stop bashing your head against a wall with the NHS. I pay for a yearly Fibroscan to monitor my liver with a CAP score to measure fat and KPA score to measure stiffness. And I get the occasional blood test with a full liver panel. Ultrasound is rubbish for early stage ASH or Nash and only useful to measure extreme fatty liver and cancer. It can in some cases detect cirrhosis.

When I drink my liver really hurts with the pain stopping me from sleeping and inhibiting movement. I stop drinking and the pain subsides to a dull ache. So... my last specialist said it was muscle cramp!!! Idiot!

A biopsy is the gold standard for finding the molecular changes that would indicate Hepatitis or Steatohepatitis, The NHS won’t go there wasting money on other stupid tests instead. Even though their own site recommends it if pain persists!

All the best and good luck.

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