Feeling frustrated

[Liberty82]

Hi, I haven't been diagnosed with liver disease but I absolutely feel I have it. I was a heavy drinker in my twenties and early 30s, cut down a fair bit over the past 2 years. But I did have 4 months of extreme heavy drinking in early 2017. Since then I've rarely drank but had an accidental paracetamol overdose not long after and didn't go to hosp since it wasn't a lot of pills more like a staggered over dose.

My symptoms are, lack of regular periods (that only came back after stopping drinking), sweating and hot flushes with heat coming off my liver area right through to my back, pain in upper right quadrant that spreads through to my back and right shoulder, a period of itching after I had my last drink of alcohol in Jan, belching, sulpher burps, bloating. My liver function tests have always been normal and I had a private ultrasound that said the liver was hard to see due to abdominal gas and bmi but it appeared normal as did other organs.

For the past 2 months I've been eating clean and my sweating and liver pain almost disappeared and I've lost weight, over a stone. The pain and sweating were my constant symptoms, not a real pain just constant niggles like my liver letting me know 'I'm here', however my doc put me on antibiotics, I was extremely reluctant to take them as I was worried it would affect my liver and 3 days in the sweating and pain have returned on a much higher level, it's so scary, the heat that comes off my back, under ribs and right side means i have to put cold packs on but it's like the inflammation is inside. I'm so bloated and gassy I've been house bound for 3 days and here I am the 4th day in now and feeling no different. I've had to stop the antibiotics, it feels l like my liver is screaming at me. I get pain and sweating if I take other things like paracetamol or other drugs that are heavily metabolised by the liver but this is the worst I've ever been. I'm so uncomfortable and miserable with the gas and bloating and wondering will it ever go back to normal?

I've had enough now, I've known for quite some time there were problems with my liver, is very difficult to describe to people if they can't feel what's going on and I know sweating and hot flushes are the usual symptoms but they actually have come up a lot when I've been reading about and speaking to others who have liver damage caused by pain relief. The BLT is coming here next week, last year I travelled to England to see them but it was inconclusive due to my bmi. I'm desperately hoping that since I've lost some weight that they can get a clearer picture but I do carry my weight on my abdomen but my bmi is currently 33 so I've still a fair way to go with weight loss but my new lifestyle change has become a way off now.

My other question is would anyone know the rough costs of seeing a hepatoligist or gastro privately? There doesn't seem to be any private hepatoligists that I can find at the ulster independent clinic that is the main private hospital in Belfast but would a consultation with a gastro be roughly the same with the same tests, what testing would they initially do?

My Gp is uninterested in hearing what I've got to say as my lft are normal and that is all they go off symptoms or not. I've just moved GPS and it was an absolute nightmare so I'm reluctant to move again and I wouldn't even know where to go to, prob back to my old gp who weren't great but they'd known me my whole life so at least referred me for an ultrasound but I had to miss the appointment due to a family tragedy.

Sorry for the long post. My liver is deteriorating, it used to be that I could take a paracetamol or have a drink of alcohol but since Xmas I can barely touch any medication or my symptoms massively worsen or I wouldn't dare touch alcohol as I'd sure as hell know all about it.

Thank you for your responses, you've been a great help and source of info for me x

[Hidden]

I'm not a doctor, but a couple of suggestions.

You might ask your GP about an "ELF" (Enhanced Liver Fibrosis) blood lab. This would be much cheaper than a private visit to a hepatologist, and would answer your primary fear of advanced alcoholic liver disease. If your GP can not or will not order this, then you might pursue this privately.

Another possibility is gallbladder issues. Your symptoms are consistent with gallbladder problems, and this is quite common in females your age, particularly if you have been overweight or losing weight recently. Rapid weight loss can actually trigger gallbladder attacks.

An ultrasound done when they can see the gallbladder well should show any stones, which would be a dead giveaway, but you've got to keep trying to get a good ultrasound to rule out gallbladder disease. Ultrasound is a dirt cheap diagnostic, & if they fail to get a good look at the gallbladder on one try, a retest should be warranted.

Blood labs (ALP/alkaline phosphatase and bilirubin) can also indicate gallbladder issues, so I would want to make sure these have been done.

Hope this is a false alarm, and better health comes your way soon!

[Liberty82 in reply to Hidden]

Thanks for your reply, I mentioned an ELF blood test to my doctor and she told me I didn't need one, I actually had to explain to her what it was and then she told me I didn't need one. I would certainly pay for this test privately if I knew where to turn. Would a gastro offer this would you know?

On the ultrasound my gallbladder was clearly seen, normal looking and with no stones. The reason I'm sure it's my liver is 3 days after the paracetamol overdose I first started to get a liver pain in my back which id never had before, always in my front for years but never this pulsating pain in my back. Then when I next had alcohol the sweating started the next day, lasted for a week and then went away but came back 3 weeks later when I next drank. I have it all the time now, but over the past year it used to only come on after alcohol intake, it almost went away after eating clean but now it's back with a vengeance. My periods that had been regular my whole life became irregular after the paracetamol overdose, literally the next one never came. And it took me months to add the dots. Since stopping alcohol my last 2 periods have been regular. There has only been 3 regular ones in almost 2 years and that's been over times that I've abstained from alcohol for 8 weeks or more. It's not my hormones as they have been checked and they are normal.

I've just turned 37 and I've put off ivf for 2 years now as I'm worried about the drugs and my liver. My first round 3 years ago was successful, good number of healthy eggs and resulted in a pregnancy but I miscarried. My second round 2 years ago was right after the paracetamol overdose and the round looked as though it was going successfully as I responded well to the drugs and it looked like I'd get a good number of eggs from the scan but at the egg collection there were no eggs and the doctors were baffled. This is very rare when you've responded well to ivf drugs as they can usually tell the number of eggs before collection. My scans were looking good, none of the doctors knew why there were no eggs, they thought I'd maybe ovulated early but it appeared not to be the case from blood results. I know this ivf jargon doesn't make sense to a lot of people but it's another piece of the puzzle and I believe the reason for no eggs was my liver function problems, it appears from my periods that I've only ovulated 3 times in almost 2 years even though my hormone levels are normal so no clue as to why that might be happening but I knew it was poor liver function considering all my symptoms. I doubt I'll ever be a mother now as I don't think my liver could handle ivf drugs and apart from getting pregnant in my mid twenties to an ex and miscarrying my husband and I haven't been been able to get pregnant together. It's sh*t but I'm blessed in many other ways so I try to be grateful. Sorry about the rambling. I'm just trying to paint a clearer picture x

[Hidden in reply to Liberty82]

A gastro certainly could order an ELF, but he/she might also say "I don't think you need one" and refuse your request, though if you were paying costs this would be unusual. A private pay gastro visit combined with the cost of ELF might be pretty steep though. I've read you can get Fibroscan done privately in the UK, so I imagine it must be possible to get an ELF done private pay. I guess a private Fibroscan is also an option if it might be easier. I had a private pay ASH Fibrosure done in the USA. The peace of mind is priceless and would clarify the fertility issue regarding your liver.

I'm child-free at 62 (male) myself; not so much by choice, but it just never happened. I enjoy my nieces, nephews, step child and her daughter, so no shortage of kids in my life. I also enjoy the peace & quiet when they go home! What will be, will be. Life is always good, no matter where it takes you.

[Hidden]

Hi Liberty and welcome to this great forum 👍

I empathise with what you say because I have had similar experiences too.

Frstly let me say about drinking and paracetamol. Our elder son used to drink and, apparently (we didn’t know at the time because he had left home to do his job by then) used to have copious amounts of paracetamol for various aches and pains ☹️. To cut a long story short he had a massive mental breakdown as well as severely damaging his liver - fortunately though now if he doesn’t drink he gets by - in terminology I didn’t understand at the time he is compensated 👍.

Then Ultrasounds. Although I know that obviously Ultrasounds are brilliant most of the time but they are not necessarily always conclusive in what they find. When I was in Hospital with one of my many HE “events” I was sent for a liver Ultrasound. Prior to it I had seen on my notes - I haven’t got a clue how I had seen them because I can’t remember (now there’s a surprise - not!) - that they should look for a blockage in my portal vein. I didn’t know what a portal vein was at that time but hey ho 😁. Anyway the operator told me she couldn’t get a good view and nor could her senior, when called... I went back to my bed in the ward. Along came the Ward doctor who went round the three other beds in the ward and told them all one by one they could go home hmmm I thought 😁. So he came to me and said the same “They haven’t found anything so you can go home” - now this I do remember!! So, extremely unlike me I piped up and it’s not that they didn’t find anything it was that they couldn’t see clearly enough to say! Oh my, I have never seen a doctor walk off in huff before or since! Anyway after lying there for three more days I got sent for either a CT scan or MRI scan (can’t remember which 😁) and they found a thrombosis straight away. That Ultrasound had been at least the fourth one I had had on my liver at two/three different Hospitals. So, rightly or wrongly, I don’t put all my faith in Ultrasounds.

So that’s me prattling on, which doesn’t exactly help you but may help in understanding that Ultrasounds MAY not find everything.

Since my TP I have still suffered abdominal pains which seemed to me to be a long time to be believed? I may be unfair here but sometimes I did feel very very frustrated like you. It wasn’t until I saw the best GP at our clinic that the problem was diagnosed. It took him about 10 minutes and a simple physical check hmmm. He is ace!! Do you only have one Doctor at your centre? I would go back to the old one if I were you, but that’s not advice per se 😁.

Good luck Liberty and I hope you get sorted soon? PS I have loads of Gabapentin, codeine snd paracetamol for my pain issues but since I am post transplant the first two may well not be right for you! Shame about your intolerance to paracetamol though ☹️

Looks like Metanoia has sent you a good post since I started this, so I don’t need to add to that.

All the best

Miles

[Liberty82 in reply to Hidden]

Thanks Miles, I do appreciate your response especially because I know my posts are particularly long. Sorry to hear both you and your son have suffered liver problems. Do you mind me asking what kind of symptoms your son had and how long he's been compensated for? It's just his problems seem to be started by the same thing as me, I do have an addictive personality, first it was alcohol then pills. Going alcohol free doesn't really bother me now, even on nights out but I haven't fully quit pills as I'm on pregablin for neuropathy and defo dependant on them and I also take codeine when I'm highly anxious. I've been taking cbd oil and it seems to have cured my neuropathy so now I'm trying to come off the pregablin. It doesn't affect my liver the way most other drugs do but I know my liver would be better off me taking nothing. As I sit and write I'm so bloated and gassy and the heat coming off my right side causing waves of sweating scares the hell out of me. I honestly think ive got cirrhosis, I keep thinking and praying its not as badly damaged as that but I really don't think one tablet for instance when I took a mirtizipine to help me sleep I had pain and sweating for over a week. Honestly, I can't imagine how one 15mg tablet could do that unless I had cirrhosis.

I'm in a bit of a vicious circle here that I need to get out of, using medication that was given for neuropathy to deal with my severe health anxiety but it's doing me more damage. I've cut my pill taking back but I still struggle with it some days.

Good for you for putting your foot down when you knew something was wrong. I go in with great intentions but end up intimidated and just give up after arguing my case. My friend recommended this surgery to me, she's been with them her whole life and the surgery that I moved from I'd been with my whole life but I'd felt let down on a few things and it wasnt in my area so I moved, this new surgery I've seen 2 different doctors and I'm impressed with neither. My friend has suggested a particular doctor to me so I think I'll make an appointment with him and maybe take my husband with me? My husband is softer than I am but maybe 2 people saying 'look this is an issue' might push them into at least sending me for an ultrasound. My last one was a private one done by a sonographer.

The blt roadshow is here next week so I'll be going for a fibroscan, the problem is I may not have lost enough weight for there to be an accurate reading.

Anyway, thanks so much for replying and much love to you and your family, sounds like you have been through a lot but have come out the other side fighting x

[Hidden in reply to Liberty82]

Hi lberty

Sorry I only just saw this reply of yours ☹️. How did you get on at the roadshow? Do tell please?

[Liberty82 in reply to Hidden]

My fibroscanan result was 5.4, I was delighted but I had a few drinks a week ago with my sister in law and the sweating came back the next day. I am at a loss now but I've been having issues with my chest ever since my liver problems started but I put it down to being stomach related from my liver. There's been crackling in my lungs so this is being throughly investigated and I've had a chest xray, bloods, and am going to a respiratory clinic next week. I also will mention the sweats after alcohol, certain meds etc. I still think its linked to the paracetamol overdose and there is some minor liver damage but I'm an ananomily at the moment but I hope they investigate the sweats thoroughly. Thanks for asking, I'll update when I know more. Hope you are well x

[Hidden in reply to Liberty82]

Thanks for that Lib. I remember in 2015 my very first HE event when it was preceded by terrible chest congestion which made sleeping exceptionally difficult and I also sweated a lot ☹️. That led to 3 weeks in Hospital. Of course that was just me and may have no bearing on your situation. For instance I know now that it was due to my drinking too much for too long. That occurrence though was 9 months after I had gone teetotal!

Hope you feel better soon.

Miles

[Liberty82 in reply to Hidden]

It's so odd. I feel they are linked but why am I repeatedly getting normal test results? My fibro was 5.4, ultrasound normal, not even fatty, 3 sets of normal lft tests. I feel in my heart that my chest is liver linked, it started at the same time but seriously worsened after 3 days drinking in Spain. This was when my chest became really bad, I'm not breathless but my chest whistles and wheezes. Some days are totally fine. Others every breath there is a noise and when I took up smoking for 6 months I sounded like darth vadar at times. I sweat in the day, not at night but basically from I wake up its waves of heat all day. You're the first person to mention to me chest congestion and liver disease. I think some people on here who got a clear diagnosis think I'm a hypochondriac.

I foolishly had a drink last nite and I've some minor itching today, I didn't drink a lot but it got me fairly drunk as its been a long time since I've had alcohol. My liver issues are totally discounted with docs, tests are perfect so they don't want to know. I know everything in the body is linked. I thought fibroscsn was holy grail of tests. My liver results paint a great picture but could they all be wrong. Shouldn't I listen to my body?

Do u mind me asking why they thought your chest was like that? At least the docs are taking my chest seriously as they can hear crackling I'm my lungs. Thanks so much for replying x

Ps I used to be a very heavy drinker in my twenties, and I'm addicted to tablets too but eat a healthy diet but I've been told by docs to quit the gym until my chest issues have been sorted but I was doing HIIT and weight training 3, times a week.

[Hidden in reply to Liberty82]

Oh boy Liberty, I find it difficult now to comment, it’s beyond my experiences because I think, my liver problems showed up at that time. No-one told me anything about why I got so ill. (May e to wife -I just don’t know and she won’t tell me much about what was going on then - not even after 4 years. Not a thing. Unless they told my wife and I didn’t know? I was completely out of it for a week and a half. During that time all I remember is weird hallucinations and the nurses getting cross at me because I wet my bed twice. Since I couldn’t even roll out of bed at that time and they hadn’t given me anything to wee into (I’m guessing here!) I’m not overly surprised! When the nurses realised how ill I really was their whole attitude changed. Just snippets of memories for me though 😁.

So sorry that doesn’t help you at all 👎🏻. Just can’t add to anything ☹️👎🏻

Hope you do get some form of resolution soon, or at least an inkling about what’s going on!

Miles

[Owlie]

Hi, I don’t have experience of a lot of what you are going through but I do have a couple of thoughts. When I had my first ultrasound they couldn’t see much because, well to put it bluntly I was overweight considerably and it all goes on my stomach. I switched to eating healthily and regular exercise and lost 3 stone, that enabled them to get a clear look at my liver. As a result of the healthy lifestyle my liver is regenerating and should heal. So, carry on with your healthy eating and exercise, it will come off but not overnight. Secondly and forgive me if this is too personal, I just wondered about whether there was the possibility you could get checked for the menopause? Some of your symptoms could be linked to that, again not a Doctor but might be worth an ask. The other thing I thought was that you are obviously very worried and that can impact on your body and fertility as well. I had quite severe pain around my liver area but eventually it stopped after quite a while of eating well and exercising. I have had the ELF test and it is very accurate compared to a fibroscan.

I hope you get sorted soon,

Best wishes

Owlie

[Oldred]

Hi Libby82. Can't offer any advice I'm afraid but persist with a GP. They aren't supposed to deny you access to a consultant. Have blood tests so that they know what's going on. Hope all goes well and you feel better soon.

[jazzjam]

I can’t say I have ever experienced pain or pulsating from my liver. I don’t think I have ever felt anything from my liver. I have experienced the pulsating when I had a kidney infection, hot sweats and shivers but that’s only recently, never had one before (18mths diagnosed with cirrhosis. But I also had a long time of hot sweats and flushing well before I knew I had cirrhosis, I always put it down to a sugar rush, had something sweet and cold and it eventually disappeared. This then turned out to be very early menopause (I didn’t have the usual noticeable changes due to the hormone implant) that was caused by my liver not processing hormones as a healthy liver would.

I would try and see a different doctor if possible. What I would also do is keep a diary, write everything down, your food, fluid, how you feel, at what times it occurs etc.. every step of each day. Take this with you to the doctor and see if you can talk through it, hopefully it will give the doctor a better scope of what to check for. Hope you can get some answers 🌻

[Liberty82]

Thank you everyone for your replies. Because I've been with an ivf clinic it's not early menopause as they checked my hormone levels just before Xmas and if your amh is too low or fsh is too high you can no longer do ivf and I've been told that I still have a good number of eggs left so I know it's not that. I'd actually hoped it was early menopause but my liver kept coming up again and again.

On Monday I'm going to make a new appt with a doctor that I'll prob have to wait around 6 weeks for, but I've waited for almost 2 years so I'm used to waiting. Over the past few days I've hard periods of the awful stinging prickling itch, this is not like a normal itch, it's like nothing I've ever experienced before and it's by miles and miles the worst of any other symptom. I've had it before after my last drink of alcohol and it went away. The BLT roadshow is here this week so I'm going to go for a fibrosccan and hope that an accurate reading can be done this time. Thank you all for your replies. It just helps to know I'm not alone.