Normal LFTS but feel something is very wrong.

[Liberty82]

Hi, thanks to everyone who reads this post. Im a 36 year old female who was a very heavy drinker in my 20s until I met my husband. When I say heavy I mean the equivalent to 2 bottles of wine per night- every night. I was drinking alcoholically but because I never drank alone or didn't drink during the day I believed I was just very sociable or I was kidding myself. When my husband and I got together mg nightly drinking habits stopped although we binge drank at weekends. All our friends were and still are big drinkers so it was normal to drink from Fri night to sat night and then nurse a hangover on a sun. After we got married our binges continued but they became every 2 weeks instead of once a week but we still enjoyed booze filled holidays and I wasn't ready for children as I was having too much fun. When I was 32 my sister had children who I completely adore. It was around then our drinking habits became 3 weekly as I spent so much time helping my sister which I loved doing that drinking took a back seat but I still enjoyed 2 holidays a year and weekends away with the girls which would be 3 day benders or 7 nights very heavy drinking. I knew from my 20s that I was putting my liver at risk and I Google it constantly so was aware of the symptoms but I still liked to 'enjoy myself.' At 32 I started trying for a baby this didn't happen so we went down the ivf route and in may 2016 when I was 34 we did our first round of ivf. I responded well to the medication got a good number of eggs and became pregnant but unfortunately miscarried at 12 weeks and this turned things on its head. By Xmas 2016 my husband and I split up for 4 months due to the miscarriage and I wasn't being a good wife, in fact I was pretty awful to him. When we split up I reverted back to my 20s heavy drinking every night and got into an abusive relationship. My lovely husband managed to get me help as by the end of it all I was a wreck. We got back together but I was damaged by everything and got hooked on prescription painkillers. I didn't drink alcohol for 8 months but I was abusing these tablets. I round take 3 paracetamol at once all the time and on one occasion I took about 15 in 24 hours and 3 days later a pulsating pain in by back started. I'd always had niggles under my right ribs where my liver lies but since it had been there for years I had barely noticed it. Now this pain in my back started I was scared but I buried my head in the sand like I always do. I stopped ever taking codeine with paracetamol in but was still addicted taking 8 at a time. I started to do sulphur burps although these have stopped. And after my abstinence I had my first drink in 8 months in November '17 on a night out for a friends birthday. I drank about 2 bottles of wine got too drunk and was in bed by 11pm. The next day I started over heating, I'm not a huge sweater but it was like hot flushes but mainly affected my abdomin and upper right leg. It didn't occur to me it could be liver related until 2 days later it felt like my someone had rubbed deep heat on my upper right quadrant and after I'd taken my codeine pills the hot flushes would be stringer for around and hour. I also had orange oliy stools for a week after but this but they have returned to normal. I went for LFTS and they came back normal. My GP told me I couldn't possibly have cirrosis but I only told him half the story - or less. The sweating stopped but I went for my 2nd round of ivf a month before the night out but after the pulsating in my back started. This time I got no eggs but responded well to the medication. The doctors were baffled as my hormones levels were normal and it's so rare for this to happen. My periods always regular to the day became irregular. It can't be menopause related because I've obviously had all my hormones tested for ivf. 3 weeks after the birthday drink I drank again the next day the sweating started again but as my LFTS were normal I told myself it was OK but I deep down knew it wasn't and was scared to face up to things especially I was addicted to codeine (I cut down to 8 a day at 2 hour intervals during ivf which was incredibly hard and I was extremely anxious and had a huge panic attack my first ever that we thought it was a reaction to the drugs as I couldn't breathe but I was in fact hyperventilating so afterward ivf went back to taking 8 in one go.) Fast forward to now and the sweating episodes have been on and off but I'm on gabapentin for neuropathy and that is given to post menopausal women to help with hot flushes. When I was on holiday 4 weeks ago I had 3 pints of beer. The best day the sweating started and hasn't gone away. I hadn't drank since but 2 days ago I had 2 pints and the sweating and mild dull ache in back and front were liver is were worse and a mild pain in Upper right shoulder also I've been going to the gym and eating healthily for 2 months as my BMI is 35 with most of my weight around the middle but I've had a slice of pizza yesterday and the sweating and hot flushes intensified after eating it . I had another LFTS test about 4 months ago that was also normal. But I know that these can be normal in cirrosis and with my irregular periods the sweating, back pain, sulphur burps no eggs at ivf all after the day I took the 16 paracetamol and with my 4 month binge when I separated from my husband and my codeine addiction it's scaring the life out of me. I know I need to stop the tablets but when I try I'm so worried that I end up giving in. My gp is phoning me today and I've got an appointment next week. I'm so sorry for the long post and appreciate anyone who reads it. I didn't know how to dilute it. Do you think is cirrosis? I know I won't know without further testing. I won't be drinking again and have even cancelled my holiday to Spain with the girls in 10 days as it will just be solid drinking and even though I was so looking forward to it I don't want to risk it. Especially as I haven't stopped the tablets. Thank you to anyone who reads x

[Porphyriamaniac]

Hi rcjh82, I'm sorry to read of all your troubles, ivf and otherwise. It's brave of you to come on and tell us all this, I commend you for that. You really need to tell your gp the whole truth, he can't help you or order the right tests until you do. The excessive pills and the booze has to stop, or you will be looking at serious damage. As for your symptoms, yes night sweats can be a sign of liver disease. Healthy people tend to sweat after a night on the booze though, its got to come out somewhere! could it also not be a symptom of your fertility drugs or the other pills you've been over taking? The upper right quadrant and back pain, could be your liver, or it could be bowels or tummy? I get pain from my bowels all over my abdomen and in my back. All that alcohol and medication is going to upset your tummy a lot..I can't tolerate codeine as it clogs me up and flares my bowels. I personally don't think you've got serious damage....YET, but carry on as you are and something will give. Im not a doctor, these are just my observations. You need to be absolutely honest with your Dr as you need help with this my love, the drinking, the pills, the addiction. Im sorry to say this needs to be addressed before you bring a child into your life. Wishing you all the best. Xxxx

[Liberty82 in reply to Porphyriamaniac]

Stacie thanks so much for the reply. I know it was a really long post so I wasn't sure if any one would. I don't drink very often these days anyway and I'm quite happy to quit for good. The tablets on the other had are a different matter. This is where the uphill struggle is. I'm also on gabapentin for neuropathy. It took my GP 9 years to put me on it after being in pain for years and I'm worried they'll take me off it if I tell them about the codeine. You're right about the ivf. We paid for 3 cycles back in 2016 and the last one we did last year we wasted because I wasn't even mentally well enough to go through it all. We still have our nhs cycle and another cycle we've already paid for but ivf is for the near future is off the cards even though time is not on our side. I'm speaking with my gp and I feel that I'll have to push for further testing although I have an appt next week and maybe they'll find something. I'm very scared but I'm going to try and stay off Dr Google as I'm a born worrier and I'll have my self dead and buried looking at it. Thank you again for your reply xx

[GrandmaDylan in reply to Liberty82]

I feel for you going through all this plus the ivf. You need to be scrupulously honest with your gp or there's no way he can help or advise you. On BBC 1 tonight it was about high strength painkillers and how addictive and dangerous they are. One woman had to go into hospital to detox so it's obviously a difficult thing to do by yourself. I've been taking painkillers for about 16 years because of fibromyalgia and I think they may have something to do with my developing cirrhosis. I never abused them or took anywhere near the amount prescribed. Personally I didn't think they helped with the pain so I generally did without. I'm concerned about my sister though as she carries a large make-up bag filled to bursting with painkillers. She often asks me for some as her gp won't prescribe the amount she wants. Take care and good luck. Deb

[Porphyriamaniac in reply to Liberty82]

No worries rcjh82 🙂. If you can drink moderately that's fine, but two bottles of wine plus in one go sounds like problem drinking. The pills, I understand about the pain I really do ☹, but as you've said you know your Dr will probably stop them and he'll do that as it's dangerous to you, which you also know or you wouldn't be here. I'm not one for telling people what to do, you'll make your own decisions, but if it were me I'd tell gp absolutely everything, maybe there's other things he can do for the pain? You need your mind and body as healthy as it can be now. Wishing you lots of luck, let us know how you get on. Xxxx

[Hidden]

Hi

I really sympathise with you... i think (of coutse i dont know) that many of us dont tell the doctor how much we actually drink - I certainly didnt! But you must, as the other two replies state, be honest with your GP if you can- it will help you i hope.

I was going to the hospital liver clinic for about five years and after the first year i was told in no uncertain words to give up drink, and ive never had a drop for over 4 years now - fortunately my wife joined me even though she didnt have to! Not having alcohol in the house really helped me.

However (sorry for droning on) three years ago i blew up like a balloon and got put in a hospital bed there and then. Like you i buried my head in the sand and thought it would get better by itself lol and waited about two months waddling round like a duck until my sheduled liver clinic appointment. More fool me, but at least i was in a “nice” hospital bed. Many days of hallucinations followed - wow they were so real! Whilst this was going on my wife was told i wouldnt make it- fortunately noone

Told me 😀.

Anyway i came out of hospital and therafter had many episodes of toxins getting in the brain sending me dolally and leading to hospitalisation each time.

Fortunately i had a joint Derby/ Birmingham clinic one day and i was put in Birmingham care. Wow they are great. Eventually they found via a CT scan a thrombosis in the portal vein which didnt show on the MANY ultrasound scans i had.

At last 3 months ago i got put on the transplant waiting list, i was so glad and 4 weeks ago had a transplant. Best thing since sliced bread, i can now walk further than i could for about 10 months.

So please try and get to your hospitals liver clinic at all costs because you clearly cannot go on worrying about things as you are,

Ps coming out of hospital they prescribed me 8 paracetamol a day and 8 codene a day, now reduced to 4. The aftercare is phenomenal whilst they obviuosly want you to make your own efforts.

After all that verbiage (sorry!) what im trying to say is follow any instructions to the letter but if you struggle tell them. Im pretty sure theyve heard it all before and more! If you need a liver transplant (my liver had originally started to repair itself then gave up on me haha) dont worry about it (well of course you will) but try and think about afterwards.

All the best, do keep going and i hope everything works out for you on the ivf trail as well.

[Liberty82 in reply to Hidden]

Thanks so much for your replies everyone, it's great to hear how well you are doing after the transplant twosmiles. That's fantastic. It's good to know there is still hope even with end stage liver disease. I don't actually drink often any more, the bottles of wine a night were from the ages of about 21 through to 27. But I drank most weekends from the age of 14. I don't drink often any more, probably once a month or slightly less but I have way too much so like a bottle of wine and 8 pints of beer (or the equivalent) maybe even more. My friends are big drinkers so I do find that socialising involves alcohol but in recent years I've opted to stay in most weekends. But a lot of the time I feel like I'm always saying 'No' so show my face every now and again. But I do have 1 or 2 weekends away with the girls a year which involves heavy drinking and one drinking holiday usually only a long weekend these days. So alcohol is definitely the main cause of whatever is going on but I have no issues with quitting it for good as over the past few years my life has revolved less and less around it but I know my binges are really hard on the liver so it's time to quit, these symptoms are a reminder every day of what I've done to my body. It's the painkillers that are going to be the hard part to quit. I actually rang the British liver trust today and they were so helpful, as you lovely people have been too. The lovely lady i spoke to said with normal liver function tests she would think it wasn't cirrosis but that's not to say there is not liver damage. But with huge lifestyle changes it could be reversed or no further damage to it at least. I just hope I'm not too late. I've read many stories of people who were. Although there are plenty of positive stories so it's not all doom and gloom. The lady at the British trust gave me some numbers for drug and alcohol addiction in my area so painkillers would fall under drugs. I know painkiller addiction is rife. Thanks again for all your replies. It's really helped xx

[Porphyriamaniac in reply to Liberty82]

Good for you rcjh82! 🙂 positive steps! Do let us know how you get on, Wishing you lots of luck and love. Xxx

[Hidden in reply to Liberty82]

Yes as stacie says please keep us informed.

[Liberty82 in reply to Hidden]

Thank you. I have some some blood tests on Thursday so and a doctors appointment on Thursday so I'll be sure to let you know how it goes xx

[Liberty82 in reply to Liberty82]

Just a quick update. My next round of liver function tests came back as normal too. The doctor pressed on my liver and said he couldn't feel it. He told me I categorically don't have cirrosis. I thought that was a pretty bold statement to make since he doesn't have xray vision! He's sending me for an ultrasound next Sunday to check my gallbladder, which I don't feel there is a problem there. I was still so concerned that I decided to book a trip to Wolverhampton where the British liver trust were for the day offering fibroscans. I live in Ireland but I felt it was worth the trip. I took my sister in law who is a very heavy drinker and in her late twenties. Unfortunately they struggled a bit getting a clear picture as I have a BMI of 35 which I'm slowly reducing. He did say he could see some fat but otherwise of what he could see was normal. He said that since my blood work was normal and from what he could see my liver looked normal and if the ultrasound comes back OK then I should take it there is not an issue. My sister in law gets very intense pain in her upper right quadrant, where her liver is if she's been on the drink for a few days. Her fibroscan came back as normal and they didn't mention fat. I get a dull ache in my upper right quadrant and in my back too if I take any alcohol at all. The sweating never happens when I drink. Just when I stop. But I'm beginning to think that my medication pregablin is causing me to sweat with withdrawl. I've been on the highest dose for 2 years. My IVF doctor and my GP both have suggested to me it could be the pregablin that is causing the sweats. I don't take it every day but am more likely to take a double dose when my neuropathy flares up badly or when I have anxiety (wrong I know, it's not hard on the liver BUT I do know my liver has to process everything that goes in). I have looked up pregablin withdrawl and it mentions hot flushes, feverish and chills when coming off pregablin and I'm wondering could it be this? I never have the fever/hot flushes/chills with pregablin but when it wears off it comes back. It doesn't happen either if I'm drinking but when the alcohol wears off the the sweating is back. It's happening all the time now. Gabapentin stops the sweating too but these drugs and the alcohol central nervous system suppressants and they they also work on stopping my neuropathic pain. I have small fiber neuropathy and sweating can also be a side effect of that but I've had the neuropathy 9 years and the sweating started a year ago. I'm still pretty clueless but I think it now could be my pregablin and I'm going to start tapering under the 'watchful' eye of my GP. My ultrasound is next week so I'll be clearer then and will update. The British liver trust are an amazing charity. I'm so thankful for the work they do. I'd like to do a charity skydive for them once I've cleared up all some of my issues. And thank you to everyone on here who have taken the time to reply to me. X