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British Liver Trust
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Looking for advice

Hi everyone,

This is my first post so I'll explain my situation to start with. I've been a heavy drinker for around 20 years. (Bottle of wine almost every night, bar two periods of complete abstinence during pregnancy) Around six months ago I began to notice an itchy/tingling feeling in my skin so I went to the gp. They did several blood tests including liver function, all of which came back normal. I told the GP about my drinking history and the advice was for me to cut back to normal drinking levels (i.e. 14 units) for a couple of months and see if things improved. (Just in case it was fatty liver.)

I cut back as advised but was still feeling uncomfortable so I went back again and was told perhaps I'm reacting to something I'm eating or to histamines in the wine so now I'm keeping an eye on what I eat and drink. (No alcohol.) I've also taken antihistamine but to no avail. I'm still concerned it could be my liver as I'm aware that tests aren't always accurate. I asked my GP for a scan but this was refused on the basis of my blood tests, however they did agree to do one further test blood test which was the GGT test. This also came back normal.

I started to feel reassured but am concerned again now due to feeling quite nauseous over the last couple of weeks. Unsure what to do next as my GP was really unhelpful last time I saw her. (They also previously misdiagnosed my thyroid disease as just a need for diet and exercise) Can anyone advice me as to the reliability of the liver function tests and advise the best place to go for a private scan or to see a private consultant.

Thanks in advance for any replies.

Win x

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Hi good news on the blood tests especially ggt. Its not impossible to have liver damage with normal bloods but highly unusual. The doctors response is not unusual either given the bloods. If you're really concerned then you could go for a fibroscan privately it's about £300 which should show general state of liver health. Worth knowing that you can have symptoms of fatty liver without showing up on ultrasound. That was certainly my experience and I have a similar drinking history to you. 20 years of drinking will almost certainly result in some fatty liver. Pins and needles doesn't sound like liver to me- could be something else. Take the advice on the 14 units a week though or less. Best k

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Hi, thank you for your reply.

Nice to hear you say it would be unlikely I'd have liver damage with normal blood results. It was just that I've read several comments on this forum with people saying they've had significant liver disease with normal results and it got me panicking.

I did follow the doctors advice re cutting down and have been sticking to just having a drink on a fri/sat for a few months and since a couple of weeks ago I've abstained completely. It's the appearance of nausea which has started me worrying again.

I feel like such a fool for drinking the way I have for such a long time and every time I look at my kids I feel so guilty. My other half is also a hefty drinker but I've persuaded him to have a two month break and then stick to only weekends, although I now feel like I don't want alcohol in the house at all.

Wish I could get an explanation for my itchy skin, the docs are just shrugging their shoulders and it's been driving me insane for six months now. I think I will go for a fibroscan to put my mind at rest, thank you again for replying to me.

X

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You're very welcome . I had itchy skin mainly on the shins and ankles actually when I stopped drinking a few years back combined with a diet. This disappeared when my ggt levels dropped. Do you have other symptoms? Pale stools etc? This is an indicator of fatty liver or gallstones. If you don't then that's a good sign as well. Itchiness can be caused by a whole host of things. Best k

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Hi k, yes I do have other symptoms such as bloated tummy (seems just a night tho), also I seem to bruise very easily. My stools have been black in the past but mostly are yellowy and very loose. (Not the clay colour people mention) My skin irritation is all over, not really specific to any area. Seems to ping from place to place, my head, my arms my legs. Anywhere really. Doctors just saying I will have to live with it.

I'm now drinking lots of water and eating a healthy diet so hoping I'll start to feel better soon. The nausea is worst in the morning but hopefully will stop soon.

I've recently started having B12 injections and hoped that my b12 deficiency might be the reason for the itch, but no change.

Hope that you are well now. I really appreciate you taking the time to talk with me.

x

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Hi Winnie this sounds like an issue with the bile ducts they might be a bit locked which can cause itching. Have you mentioned that to the doctor?

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Ah Ok. no I haven't told the doctor but I will try and see the locum Doctor who was really helpful and talk to him about it. Thank you for that. I'd be so glad to find out why I feel like this.

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You say you've stopped drinking 2 weeks ago/ I would say give it another 4 weeks and see how things look then. I'm guessing I'm a bit older than you and had been drinking for longer-it took me about 3 months before I saw real improvements.themainthing is if you can stay away from the sauce you should start to get better-that's my guess. Best k

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Thanks k, I'm 44. Just to clarify, I cut back to 2 bottles of wine a week about 6 months ago and stopped completely 2 weeks ago. I'm just confused that I feel nauseous when I've reduced and now stopped my alcohol intake. Hoping it subsides soon. Thanks for getting back to me.

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Ok you're doing well to cut down like this. It can take weeks to get the drink out of the system if you've been drinking -some say a month for every year you've been drinking so in your case 6-8 weeks. I'd be willing to bet you start seeing some improvements in about 4 weeks especially with the digestivesystem. Keep us posted. K

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Thanks k. A month for every year I've been drinking would be 20 months in my case. Hoping my nausea is withdrawal and will settle in a month or so as you suggest. Although not sure I'd have withdrawal symptoms when I've only been having a drink at weekends since january. Here's hoping though.! How are you doing now? x

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I don't think it's withdrawal symptoms as such. I thought that when I first gave up. It's probablymild alcoholichepatitis which can have similar symptoms to more serious liver conditions and tends to get worse before it gets better. As for me I'm ok but I still have elevated ggt because I didn't give it enough time before drinking again. Hey ho you live and learn. I'm a wine drinker like you and the thought of giving up completely depresses me somewhat. I think you should be ok just carry on the good work. 😊

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Glad to hear you're doing ok. Have you quit drinking now? Trying to reassure myself that good blood results mean I should be ok. I feel so frightened just now I can barely look at my kids. Especially as any problems I've caused are my own doing. Feeling anxious but trying to be pleased I've stopped now and thinking each day will bring improvement even if it doesn't feel like it. Thanks for your support. x

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I haven't quit although I go through prolonged dry periods from time to time. I should really do what you're doing think it's going to be stoptober for me followed by a dry november. There's loads of support on this forum so you're in good company, stay with it! Best k

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I feel like I don't want to drink again. I'm already trying to work out what to say to friends on a forthcoming night out to explain why I won't be drinking. (Can't tell them I'm scared about liver damage) might just say I've decided to have a bit of a health kick. good luck for stoptober and dry November. Good to have support on here. You guys are keeping me (just about) sane right now. x

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Actually one thing you'll notice is you start to look a lot better -when I stopped drinking about 4 years ago I lost about 10 kg and looked about 10 years younger so tell your mates you're on a health kick! And also if you want look at some my earlier posts when I was in the same position as you. You'll get better trust me !

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What a nice post k. Thank you. To be honest I've already lost a few pounds since cutting back in January. Just need to be rid of these horrid symptoms. Feeling determined! I might have a nosy at your posts. It helps to be on here with people like you who understand. x

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Hi

No idea about the various links but good diet, exercise and healthy drinking are good for you, so all the professionals say. As you have kids, it is always good role modelling if it is explained right to kids. I only say that because I know if I pushed my eldest too far he did the opposite to spite me. The things I treated as a way of life e.g. not smoking, (both hubby and I came from families where at least one parent smoked and we didn't like the smell, so never did) he just didn't start.

If the bonus is you all start to feel a bit better then it is a win for all of you. It is really hard changing life patterns. Tell me about it I'm nearly 60 and have to rethink some of my eating habits.

Good luck

G

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Thanks G,

Yes, it is hard changing habits but I'm feeling determined and I'm going to be very insistent re having alcohol in the house. Too much at stake to carry on as we have been.

x

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Good luck. It is hard but one day at a time and telling yourself and praising each other helps.

G x

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Thanks G. Am finding it hard not to panic due to the nausea feeling starting. Especially as I've been drinking at normal levels for a few months now and had nothing at all for a few weeks. Thought I'd be feeling better but instead I feel worse. Think I need to go pester my doctor again. Hate not knowing what's going on. Glad to be able to come on here. x

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Often the way. Your body needs time to adjust. My mum-in-law said years ago when she stopped smoking she became really ill. It made her decide not to start again. I think you are doing the right thing speaking to your doctor.

Are there any local support groups you can join in your area? That might help as well.

Fingers crossed for you. Let me know how it goes.

G x

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Hi

Hope you start to feel better soon. My Dr gave me fexofenadine 180 mg for itching and prochlorperazine for sickness. You could ask your Dr for these to see if they help . Please take care. Lots of love Lynne xxxx

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Thanks for your reply Lynne. I might pester at the doctor agsin. Especially as the nausea is a new sympton since cutting back and now stopping drinking. Are you well now? x

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Hi

I've been diagnosed with Nash and fibromyalgia so I feel pretty rough with pain at the moment, going to pain management on Monday. Thank you for asking. How are you feeling? Please take care. Lots of love Lynne xxxx

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Bless you. I've a friend who has fibromyalgia and she also suffers with the pain. Hope you get good support with the pain management. To be quite honest Lynne right now I'm just feeling really anxious and very very guilty for the abuse I've put my body through. I really appreciate the replies from you guys on here. Hope you are feeling better soon. Xx

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Thank you. You shouldn't feel guilty, you have done really well.

Mine has been caused by all the meds my drs have given me, it's called non alcoholic steatohepititis. Keep your chin up, you are doing great xxxx

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That's really kind of you Lynne. I've not had a diagnosis of liver problems as yet. My blood tests have been normal but I have got no explanation for the itching and now nausea and I can't help thinking I must have damaged my liver. (It's a massive worry for me as I lost my brother to alcoholic liver disease when he was just 32.) I'm going to go private for a fibroscan and hopefully that will reassure me or allow me to push for more info from my doctor. The docs just keep saying I'm fine because the results were ok. I'm not convinced tho. Thank you for talking to me. Especially given your ailments are not of your own making. Wishing you well. Xx

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Let me know how you get on please. Good luck xxxx

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I will x

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Thank you xxxx

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I'm really sorry you lost your brother at such a young age xxxx

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Thank you. He was a lovely man. I miss him every day. I see his eyes when I look at my daughter and that makes me feel I still have him close in a way. X

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Please take care. Lots of love Lynne xxxx

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And you Lynne x

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Thank you xxxx

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So you think maybe my sickness could be down to withdrawal? I feel better thinking that might be the reason. Thank you. X

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Take care. Let us know how it goes for you. I really hope that you have caught any potential problem soon enough.

I have recently been told I have non alcoholic fatty liver disease and cirrhosis. Lifestyle including needing prescribed meds and having limited mobility for a number of years, is likely to be the cause. We are still not sure yet. I don't even know if there's a hereditary contribution to it.

All I know is, I wish I had really understood earlier the problems I had going on in my body. There is a fair chance that if your blood readings are good you have nipped it early.

Getting it checked is sensible and your positive attitude to ensure you make changes should help.

G x

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Thanks G. I'm sorry about your diagnosis, and I really appreciate the non judgemental attitude and support you have shown me. I hope you are keeping well and getting good help. I'm going to pay for a private scan as hopefully that will give me some definitive answers. I'm glad I came on here and found some very kind people. Xx

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No problem. Why should we judge? We all come here to help each other through some pretty rough stuff.

We all have a story how we got here, but at the end of the day it's quite scary and we all try to help each other. We can have enough how comes, how could you, why didn't you, it's not fair, etcetera, outside of the forum. That's not what we are here for. I've only recently joined and I have found the support fantastic.

Let us know how you get on.

G x

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Bless you. I'm glad you've found support here. It feels a safe place where people can be honest. I'll let you know how I get on. Take care. Xx

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Hi g

Hope you feel better soon. I've got Nash which is going worse, I've got so much pain, I'm going for a fibroscan in October. I've also just been diagnosed with fibromyalgia which is also extremely painful, I've got to have scans and bloods. It's all nothing compared to what you've got. Please take care. Lots of love Lynne xxxx

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Hi Lynne

Thanks for your kind words. It's quite strange. I decided not to join a forum about spinal cord injuries when it happened 3 years ago. I was really in denial. I was incredibly lucky compared to most and I had good fortune on my side and after the injury some excellent medical support. I was in hospitals and rehabilitation from all of September to the end of November. By the end I was doing a few steps. Not bad for someone told they were not going to walk again. I felt I didn't have the right to seek help from others who had a spinal cord injury incomplete like me because I had been so blessed with good fortune. I was back at work (part-time) by the middle of January after my rehabilitation discharge. It was a kind of survivors guilt I think. I may start to join one of their forums.

Being on this one is really helping me to find out more about my condition in terms of feeling comfortable talking about it and researching about it. I can't undo the past, I can only move forward. I go for my sci yearly check up late September so I'm going to try to do some more holistic thinking about my body and get advice.

Thanks everyone for your help and support

G x

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Hi G. I just wanted to say how much h I admire your strength of character and positivity. You are clearly a very strong and kind person and I wish you well. Xx

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Thanks winnie73

I'm an advocate by profession. I can think of some I have questioned when supporting a client, who would never call me kind. I have a nickname from some of my clients as the their tame Rottweiler.

Gx

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Haha! That made me smile! ☺️ You're obviously doing a great job then. I was a project manager in construction before having kids. Then full time mum for ten years. x

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So you had to have some strength of character for that. I don't think I would have survived in that world. And I know how tough bringing up kids can be.

Keep smiling and fighting

G x

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I am glad to have left construction world behind to be honest. It was good at times but long hours meant it didn't work for family life. I'm back working now, in a school so it works around my kids.

Thanks for the positive vibes.

wishing you all the very best xx

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Hi

Hope you all start to feel better soon. Take care. Lots of love Lynne xxxx

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And you Lynne. Keep us posted on your pain management appt. hope it goes well. Xx

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Thank you. Will do, it would be nice to get a full night's sleep!! Xxxx

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Hi

How are you doing?, Went to pain management. It was an assessment, someone is going to phone me about my meds and hopefully

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Hiya Lynne. How are you feeling today? Hope they can get your meds right and you can get the sleep you need. Nothing worse than lack of sleep on top of everything else. My friend has been given some new meds and her pain has improved since so hopefully you'll have the same result. Take care. Xx

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Thank you so much. Hope you are ok too xxxx

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Family for most of us are the most important people in our lives. Even if they do push our buttons sometimes.

G l ad the hours are better for you.

G x

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Hey there,

Sorry to hear you're not feeling well. Improving diet and drink is always a good start at any time. So you are doing the right thing.

I think you have to get a fibroscan. It's the only way to get a good idea of liver health. Blood test are rather meaningless. Most show inflammation not scarring / damage. The only true liver function blood test is bilirubin. Albumin and INR. Those are only abnormal when the liver is on end stage disease.

Once you have a fibroscan you'll know if it's ok and time to cut back or if there is a problem and your doctor can take it from there and refer you.

I recently had completely normal blood test and then did a fibroscan which can make abnormal. I'm waiting for my referral to specialist now.

Not trying to scare you but just saying worth pursuing and fighting your corner.

Hope it goes ok.

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Hi Ronin, sorry to hear about your diagnosis but good that you are being referred now. I just wanted to ask did your blood tests include the GGT test? I've heard from others that this is a very sensitive test and if normal (as mine was) is a good indicator that liver is not (yet) diseased. I have stopped drinking and really don't want to start again. I think I will get a fibroscan done to put my mind at ease tho as right now I can't think straight because of the itching and nausea. Hope your referral goes well.

Also just wanted to ask did your GP authorise the fibroscan? Mine isn't interested because if my blood result so I'll have to go private.

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Hey Winnie,

I had every test imaginable including that. GGT is sensitive but if you've stopped drinking it will normalise just like most other tests. Its a marker of recent damage, not long term.

I paid for the fibroscan myself, GP would not refer me and said only heptologiest could. Only $125, here in Canada. I took the result back to her and had to explain it to her. To be fair usually tests they order come with a report.

I did have an ultrasound that came back normal too. That's only useful if you have growths or full on Cirrhosis.

You've done the right thing by telling them about how much you drink. I had not but I have no idea what's caused mine. I don't drink large amounts on a regular basis. Youth binge drinking so possible it's drink related, don't know yet.

I will point out I'm not a doctor and don't even know if I have a problem or what the cause is. I'm just saying what's happened to me so far.

In my opinion fibroscans should be a standard test at GPs or hospitals. They take no time at all.

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Hi Winnie,

Welcome to the forum.

Have you told your GP about your alcohol history? With that information and your other symptoms, they could then request imaging tests such as an ultra sound scan in order to get more detailed information about your liver function.

You may find some of our publications useful to read, especially 'Alcohol and liver disease' and 'Liver disease tests explained'

britishlivertrust.org.uk/wp...

britishlivertrust.org.uk/wp...

We hope you find the forum a supportive place to visit, if you need to talk, our helpline is open 10-3pm Monday to Friday on 0800 652 7330

Best wishes,

BLT Admin

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Hi. Yes my gps know all about my alcohol history and the fact that I lost my brother aged just 32 to alcoholic liver disease.

They have refused to refer me for any type of scan even tho I requested it. The reason being my blood results show " my liver is fine." I've now quit drinking altogether (two weeks ago) as cutting down to just weekends as recommend by my gp, hasn't improved my symptoms. (Weekends only drinking has been since January.)

I've seen 3 different gps now about my itchy skin. Two of whom said it's nothing to do with my liver. The other said it might be due to fatty liver but she still refused me a scan on the basis of my blood tests. Although she did agree to do the GGT test which came back satisfactory. That was in May of this year.

I'm going to go for a private scan in a month or so to hopefully put my mind at rest.

In fact I'd welcome your input regards best place to go for a fibroscan in Yorkshire? I've read through most of the info on this site and it's been extremely informative and helpful, as indeed has this forum.

Thank heavens for the British liver trust.! Feel like you guys are something of a lifeline just now.

Thanks for getting in touch.

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Hi

How are you doing now? Can you change drs to one that would refer, if not , then go for a private scan like you said. I'm sorry I don't know of anywhere near you as I live in Rochdale. Please take care. Lots of love Lynne xxxx

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I would go back and emphasise the pale stools and digestive issues which aren't normal. That taken with itchy skin indicates bile ducts gallstones liver. Think the should at least order an ultrasound

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I'm seeing th practice nurse this aft for a b12 injection. I might mention to her that I've been feeling sick of late. She's been the the most caring helpful person I've seen at mu local practice. She actually takes the time to listen and talk through blood results. Although I realise she's not the doctor. She might pass on my comments tho. Hope you're doing ok.

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Hi Win,

If you'd like to give us a call today on the helpline we can have a chat.

We can't recommend a private clinic to have a fibroscan but we can signpost you to our list of UK liver units.

Best wishes,

BLT Admin

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hey Winnie-how's it going? any improvement? I'm keeping an eye on you :-)

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Hi there. I'm doing ok. Thanks for asking. Still on the wagon. Feeling pretty good. Nausea pretty much gone. Headaches settled down. Still got itching skin. Seeing the locum doc ( who was helpful before) on Friday. Hopefully he'll help me figure out why I've still got this problem with itching. How are you doing now? ☺️

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P.s. I'm also around a stone lighter which is good! Hubby been dry for three weeks now too. Which makes me really happy and proud of him too.

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Hiya Winnie thought I'd drop you a line regarding itching, for about 2.9 years I've daily come out in rashes, sometime I look lie been thrashed with a branch as I get red lines, raised areas and I never know where it's going to be, never on my face. The doc put it down to stress related urticaria (hives) and then mentioned dermatographia as I could literally write on my skin with my finger! I've given up on fexofenadine and all other anti histamines but I don't know how your itching is, is it red? Does it spread if you itch it? I'm 49 and so wonder if it is linked to hormones but ones thing is I had alcohol related hepatitis in Jan this year, haven't drunk since, blood tests all normal, 2nd ultrasound now normal and has a fibroscan with a supposed ok score.... as someone else said, there can be many causes. I'm not a doctor obviously and it still drives me nuts but I live with it knowing it will go within half an hour usually. Many mention itching and I often wonder what exactly the itching consists of.

Take care,

Michelle

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Hi Michelle. Thanks for your message. This is the weird thing. There's nothing to see on my skin. It just feels like I've been rolling around in fibreglass. Looks totally normal. Three doctors have given me different theories. One says its fatty liver but cos of normal blood tests won't offer further examination. Another said allergy but antihistamine did nothing. Another said it could be allergy to alcohol and suggested I abstain for two months. 5 weeks in I'm still itching. The locum doctor I saw back in February this year was willing to refer me to a dermo and I've finally got another appt to see him and will ask for the referral. The other docs have pretty much just fobbed me off. Were your blood tests normal even with alcoholic hepatitis? Or did you mean they are normal now? Hope you are well and congrats on kicking the booze. x

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Hi Winnie, thanks, I'm more than happy to avoid alcohol like the plague, thankfully I don't find that hard or give it a thought.

How strange, it's a good idea to get it checked out then, my blood tests were definitely not normal when I had the hepatitis, ALT/GGT and of course bilirubin were all elevated, potassium on the floor etc and my US in hospital definitely showed fat and low level ascites but the US in July was totally normal and all bloods went back to normal and I had the fibroscan more recently so appreciating I've had this rash/itch business going on since around Feb 15 and it can be stress related I can only assume it's linked to that as it's ongoing anyway.

Perhaps others who get itching may be able to shed light on theirs. Mine is visible to the eye. When it comes, I'd happily glue Brillo pads on the floor and drag myself along. I hope you get results about it soon

Michelle xx

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One gp did suggest it could be anxiety for me given my history of depression but I feel like I'm in a better frame of mind than I've been for a long time. (Other than worrying about why I feel like this.) Might never get an answer tho. Will see what doc says on Friday. Glad you made a full recovery Michelle. Hope the itching subsides eventually for you. Sounds pretty unpleasant. Thanks for coming back to me. x

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You're welcome Winnie and thank you and I hope you get to the bottom of yours. X

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Hey Winnie, did you get a fibroscan.

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No not yet. Was advised by others best to wait till I'd been off the booze for at least two months. 1 month to go. I'm back at the doctor on Friday so will see how that goes. Hows things either you?

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That's probably a good idea. You'll get a better reading than if you've just been drinking. Hope it goes ok for you. Plodding along for me. I have a good job and supportive family to get me through this horrible limbo. All the best.

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I'm ok good news on the weight loss-stick with it-sounds like general improvement. I wouldn't worry too much at this stage-how about the digestive system? pale stools etc. To me they are linked with the itchiness. You're a month in now lets see what happens in 2 -4 weeks, Best K

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Hi briccolone, glad your doing ok. Not noticing a difference on the digestive front yet but glad to be feeling better generally. I'm at doc on Friday so we'll see how it goes re referral or otherwise. Thanks for asking after me. Good to hear from you. :)

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Good luck with that keep us updated. Best k

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Hey. Update as promised. Doc was helpful. He's referred me to a gastro. Also testing for Celiac's disease and checking b12 again. Hope all good with you. :)

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very glad to hear it Win-onwards and upwards....best K

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