Worried sick! I’m new here: Hi, I’m new... - British Liver Trust

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Worried sick! I’m new here

Owlie profile image
22 Replies

Hi,

I’m new, hello. I had some liver function and an ELF test a fortnight ago and an ultrasound scan and received a terrible shock at the Drs last week. I was told my liver was enlarged and fatty and I was referred to a consultant as my ELf score was 11.0.

I don’t drink, smoke, do drugs and I’m now terrified that I have liver disease and it can’t be reversed. I have been overweight for a while which got worse after a traumatic time at work 2 years ago and have literally done no exercise or eaten well. I was also on a long term drug lanzoprole, stopped taking it this week.

I feel like I’m in shock and am terrified to be honest. I didn’t have anyone to talk to about it but by pure luck found this site tonight.

Since then I have eaten healthily and lost 4lbs, I have also started exercising. The only symptoms I had were severe itching and occasionally a dull pain in my right side.

I understand that no one can really help until I have seen the consultant, 3 months away, but unfortunately the Internet is a wonderful thing and I think my research has made me worse.

I I would be very grateful if anyone could reassure me a little bit and offer any advice.

Thank you for reading,

Owlie

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Owlie
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22 Replies
moonbeam4 profile image
moonbeam4

o.k owlie, number one) welcome. number two) deep breathe and slow down!. number three) Keep away from that internet! You will confuse and panic yourself . For starters, fatty liver is totally reversable through diet and other simple lifestyle changes such as starting some gentle exercise. There is plenty you can be getting on with before your Consultant appointment, perhaps ask at your Doctors for an appointment to see a nurse or dietician if you feel you cauld use some dietary support and advice. The itching you describe is merely your liver having a moan, and the bilirubin rising as your liver rids itself of toxins via the easiest route possible, your skin. Drinking plenty of water and gentle baths should help. Our livers are the only organ capable of totally regenerating or regrowing itself. You really have been lucky in a way, that you,ve had this warning shot over the bows and can sort things out now while in the early stage. Liver disease is silent and often goes undetected for many years until a person has progressed from enlarged fatty liver, through fibrosis ( still reversable ) to cirhosis, which I have and although no longer reversable ( found I had it too late, although new research is promising, and it seems that even cirhosis may be reversable in the future, fingers crossed!!.). through diet, exercise, i am very well. Try and avoid processed food and cook fresh so you know what you are eating. Salt, which along with alcohol is poison to our livers, is hidden along with other nasties in processed food as I,m sure you know. Honestly love, you will be fine, As I said before count your blessings that you ve been one of the fortunate ones who caught this early !. Oh, another tip, we often forget questions we meant to ask the Doctors or Consultants and inevitably and annoyingly remember them the minute we leave the building!. It may help to keep a note of any questions you think of asking ss you can take your notebook with you. Many folk, me included find it helpful to have a friend with them as another pair of ears during appointments. I also ask for copies of all blood tests etc so I have my own records. The swelling will go down if you look after youself, the pain you describe will go away, though this can take a while. The consultant said to me, after I complained the swelling wasn,t going fast enough " you took years to get like that, it will take a few months to reduce!! ". Anyway, gosh, please forgive my waffle!. It,s the wee hours of the night and I cauld almost feel your worry and panic and remembered back 3 years to being in that total panic state mysef. Stop googling unless it is regarding diet and exercise, you will be fine.😊😊

Owlie profile image
Owlie in reply tomoonbeam4

Moonbeam,

Thank you so much for your very kind words and advice. You are right I have totally confused myself and it has all been a massive shock. I did not think that anything like this could possibly happen by eating badly and being overweight. Since last week I have eaten fresh and non processed, mostly salmon and veg and loads of water. I have stopped all medication, paracetamol etc. I am so scared I did forget to breathe! I didn’t know you could ask for copies of tests so will do that. I will also make sure my husband is with me as after last week I only heard the words ‘liver enlarged and fat’ and nothing more. It didnt’t help that when I had my ultrasound I was told they had ‘seen better livers and seen worse’.

Thank you again for taking the time to reply, I was desperate. I won’t know for sure exactly where I am until I have seen the consultant in November but you have made me feel better. Thank you also for sharing your diagnosis and remain in good health. I will let you know how I get on fingers crossed and thank you so so much again. Having someone to listen helps so much. Owlie 😊

I was diagnosed earlier this year with fatty liver disease which has unfortunately progressed to cirrhosis. This came out of the blue and I was left feeling lost, confused, out of control and to an extent abandoned as I didn't know who to contact or talk to. My liver specialist did give me a leaflet that referred to this group and I have had support and been educated along the way I have found it to be an excellent resource.

There are still aspects of my condition I do not understand, but I am now on my 2nd consultation (had my questions ready) and am now feeling better for knowing what is going on. So please do use this group and regard your liver specialist as a resource and don't be afraid to question especially if you don't understand or something is bugging you.

Reducing painkillers is good (it was probably the main cause of my liver damage over very many years). I would say depending on why it was prescribed ask your GP before stopping your Lanzaprozole, acid reflux can be very damaging over time (I speak from experience) and it can be a very effective drug for that.

I agree about not reading the internet however I have done that but temper this by not believing one article I will read up and try to cross reference anything I find that is new or appears to answer a problem; BUT I always follow this up with a discussion with my GP.

So I guess what I'm saying is that things often improve over time and try to take a lead in your own treatment, this will help understanding, involvement and stop the feeling that things are just happening to you.

Welcome to the group

Owlie profile image
Owlie in reply toThe-perfect-storm

Fred thank you so much for your kind words and for sharing your diagnosis. I have to admit when I was first told the news I felt very lost. The replies on here have given me some hope that all is not lost but I now have to eat healthily and exercise and just keep going trying to think positively, very difficult for me, and wait to see what the consultant says. Thank you again for taking the time to offer kind words and reply.

The-perfect-storm profile image
The-perfect-storm in reply toOwlie

It is a very complicated subject, I no longer eat processed foods and have reduced my carb intake and increased my protein, I am slowly losing weight and this in itself helps. One thing I have read is that is important to lose weight slowly because if too fast the liver can store more fat (I guess it's a survival mechanism).

I have type 2 diabetes and my sugar levels were all over the place I watched the BBC program 'The Truth About Carbs' and was shocked at how much sugar I was taking on with what I thought was a healthy diet; Baked potatoes, pasta, rice wholemeal bread etc. although the program was not that scientific in the proper sense when they put sugar cubes beside food to show what the body breaks it down to I was shocked. I discussed the program with my diabetic nurse and found that I was following old advice on my diet. Since reducing the carbs my sugar levels have been much more stable. Oh and what alcohol I did have have is gone, teetotal since diagnosis.

mrsmerlin profile image
mrsmerlin

Hi u won't say welcome to the forum really. It's always a double edged sword knowing why people are here.

None of us can really comment on your case but if it just an enlarged fatty liver then it could be recovered fully with care.

Please don't think people will judge you as an alcoholic or drug addict. Although we do have some truly wonderful people here who were led down that path, not all of us were- to be honest I wish I was, this is like getting the morning after without the night before! Mine is from a medical negligence thing from years back and a lot are from immunity problems.

Dr Google is the worst doctor on Earth. If you want relevant, correct and up to date information, click on the British Liver Trust link. They have a host of leaflets that you can download it ask for a printed copy of.

I'm now going to say the stupidest thing you'll ever hear but i mean it. Try not to worry too much. In fact you're lucky that your referal has been so quick, we have people who fought for months. That shows your doctor is on the ball which is yet another plus point for you.

If you want to rant, scream, cry or whatever then feel free to do it here. Trust me, we all know exactly how you feel.

I also hope, in the best possible way that we don't see you on here for very long and you are already on the way to recovery from your lifestyle changes.

Rita xx

Owlie profile image
Owlie

Rita thank you so much for taking the time to reply and your kind words. I have never been a drug user and I have never drunk alcohol as I don’t like it so I think that has why it has been more of a shock as I wasn’t expecting it. To be honest I was feeling better this morning after all of the kind words but then a letter came confirming my appt with a different Dr to the one I was expecting. To cut a long story short it turns out I have been referred to the wrong hospital, wrong department and therefore the wrong Dr. This has completely freaked me out again and all I want to do is sit and cry. Sorry if this sounds like I’m whining but I’m not good with things like this as I always think the worst. It has been sorted out but now I’m thinking it’s a bad omen. I’m currently trying to reset my mind by telling myself if it was so bad I would have been fast tracked, I hope. I have been told I have to wait which is in itself a good thing and a bad thing. Good in that I have time to really sort myself out lifestyle wise and lose weight, but bad in that I will worry. It also means any probable appt will be around Christmas and my Mum died at Christmas, several years ago, and I have my children. I’m not sure how I will cope if it is bad news anyway but Christmas as well... Anyway I am sitting here trying to breathe and calm down! I hope you are in good health and thank you again and the other members who have taken time to reply. If I hadn’t found this outlet I’m not sure I would have been in a great way. Thank you so much again for being there and listening, Owlie x

Owlie profile image
Owlie

Update:

No appointments available at the hospital, there is a six and a half month waiting list. Can’t afford to go private. Have lost just over 1/2 a stone in weight and eaten no processed food only fish, celery tomatoes, veg etc. Had to restart lanzaprole as was in agony upper right tummy through to back. Not sure if this is masking something.

Cheers

Owlie

crowfordmccrow profile image
crowfordmccrow

Hey as this site says we're not on here to give medical advice, but it sounds like you are moving in the right direction. Stay strong, stay positive, don't worry about what you think. Only worry about what you know. Go for a walk, drink lot's of water, enjoy life be you. Just stop worrying stay focused. x Jai

Owlie profile image
Owlie in reply tocrowfordmccrow

Thanks Jai, it turns out I have been very lucky and as a result of changing my lifestyle my liver is regenerating. Thanks so much for responding!

Marydel63 profile image
Marydel63

Congrats on the weight loss and diet changes!! That will only help your body and your liver! If you do google only go to reputable sites. Not wickipedia or advertised sites. British liver trust, I also find mayo clinic sites to be informative . Stay strong

Owlie profile image
Owlie

Hi, I’ve been luck if you read the above post, thanks so much for your support!

Daftcookie profile image
Daftcookie

Bless you my love, I am going through something similar myself, only found this site today, glad I did as I don't feel so alone or stupid anymore xxxx sending hugs

Owlie profile image
Owlie in reply toDaftcookie

Back at you! Xx

Hi Owlie

Happy 12 months forum Anniversary !

Love Shropshire Lass xxxx🎂🥳❤

Owlie profile image
Owlie in reply to

Crikey has it been 12 months? Blimey! Xx

Owlie

Has your liver and weight improved since your original scare?

Love Shropshire Lass x

Owlie profile image
Owlie in reply to

Yes lost 3 stone, normal bloods and liver inflammation gone. Should be reversible. Unfortunately had a different medical issue appear a couple of months ago which knocked me for 6, and about to be diagnosed with another one I suspect next week. Just shoot me now!

in reply toOwlie

So you've lost 3 stone too! Well done!

Sorry to hear you may have another medical issue. Please keep me updated by PM!

I see my consultant on the 8th ... I've no idea what's going on with me .....PBC was suspected but I'm totally confused now. Bloods went back to normal July then flared up again August ... Hey ho.. x

Owlie profile image
Owlie in reply to

I’m sure it will be a temporary blip as a result of your training for your jump...try not to worry. Dread to think what I will be told 😳

ThreeSmiles profile image
ThreeSmiles in reply toOwlie

Good luck Owlie - hope it’s not as bad as you think...

Miles

Owlie profile image
Owlie in reply toThreeSmiles

Cheers Miles....knowing my luck it will be but I will just have to be patient, which I’m not!! 🤬

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