Hi I'm new to this group. I'm desperate for support as am scared... not for myself but my 2 kids. I'm 34yrs old-diagnosed at 18 with diabetes,under- active thyroid, NASH,retinopathy and neurological issues. I coped and brought my kids up. In 2019 I lost 5 stone within a year. My liver healed and LFT normal. Caught covid Jan 2021 and was in hospital with blood clot on lung and oxygen.i then suffered with long covid and had regular scans, bloods and x- Ray's. Within 10months I was then diagnosed with Liver cirrhosis! I didnt think anything of it not knowing its actually a terminal illness.
since may this year my LFT has doubled and my platelets have gone down to 92. I've been tested for all sorts and all negative including hepatitis. Conclusion is autoimmune has caused cirrhosis. My blood sugars are very high, I have tiny red dots all on my right foot,I have lost 3 stone in 5 months from doing naff all,whenever I eat I either throw it up or need toilet bad ! I also have pain from my tight shoulder which has come down to my elbow and now wrist- it aches and I'm always tired. My kids are 16 and 17 but dont understand how serious Ill I am.i stupidly missed an ultrasound scan last month due to poor mental health but waiting for another.since then I've just had LFTs done again and they're worse!
I'm scared I may need a transplant but looking into it I'm unsure if I'll get one with all my other long term conditions as it seems they're reason why liver is bad. I'm also RH neg blood group... my only living donor with same blood group is my mum and her liver is knackered via alcohol.
is anyone here relatable with my diagnosis and symptoms and any advice? I think my mental health is declining too as I fear leaving the house.I have no one inc family who is taking me seriously and basically dont want to know.my health is declining and still dont know why my liver is quickly declining... I blame covid tbh as my liver was fine prior.i need support as I'm a si gle mum-only 34yrs old and im terrified my kids will be left behind and on their own. Can anyone please help?
Sorry to hear you are having such a hard time with support
I am not an expert but if you have cirrhosis but are not drinking much alcohol (and do have type 2 diabetes) it is likely that you are suffering from Non Alcoholic Fatty Liver Disease (NAFLD) as this is quite common in non-drinking type 2 diabetics.
Your previous liver recovery in the year you lost the 5 stones seems to support this as the action taken to lose the weight could also have improved your liver.
There is quite a lot of info on NAFLD on the web but a lot of it is somewhat contradictory and confusing. However, although the article is in relation to NAFLD and a ketogenic diet this link on the Diet Doctor website has a lot on information on NAFLD which you may find helpful in working out if you may have NAFLD and taking action with your GP to address it - dietdoctor.com/low-carb/gui...
The Diet Doctor website is the worlds largest low carb website and regarding the information there they state:
"Our guides are written and reviewed by medical doctors and experts, based on scientific evidence and trusted by practicing physicians.
To stay unbiased we show no ads, we sell no products and we take no money from industry. Our website does not host any form of advertisements."
Hi thank you for your post. I'm fully aware of fatty liver as have previously worked on it. I'm on insulin but become resistant due to liver. I am diagnosed cirrhosis but unsure stage as have missed ultrasound, however my LFT results last week are much worse than ever! I've also got very low platelets. My symptoms affect me from exercise and I'm not eating much recently due to feeling sick constantly and bloated. I'm always weak and tired, been having random nosebleeds and bleeding gums. My sugars will not come down regardless taking Insulin.
My issue is whenever I have a symptom I have to decide which long term illness it is whether to contact diabetes centre, liver specialist or ENT. I gave up going doctors last year as I could never get seen. I've started going again and gp makes me feel like I'm hysterical! I always feel ill and it's making me very low mood. I dont feel as I'm getting right care or support. Although my bloods come back worse each time- my gp literally just comments "as expected" and doesnt have a clue.
I'm terrified I may have something going on I've not been tested for because my bloods scare me! I've just been told by gp to wait for US scan... which has been nearly a month waiting.
Not knowing is worse. It's not info and advice on fatty liver I need help with, sorry... I'm past that stage
Please do not think about transplant unlesss your doctors say something about this possibiltity.
RH factor is irrelevant regarding liver transplant. Only AB0 blood group should match but there are situations (like direct threat to life) that you can still have transplant without this (stronger immunosuppression needed in that case). Good luck.
Thank you. I'm trying to plan ahead so can try make some sense how to try help my kids for future. I'm just awaiting scan before liver specialist contacts me to discuss more. I'm just worried if my LFT is worse will my liver be more damaged?
It depends. I think you should wait for your hepatologist response. A lot of factors. You mentioned about autoimmune issue. All should be explained by your liver specialist who has all your tests. Here we can only guess and make you more lost. Only some genarally suggestions.
I'm not after an opinionated diagnosis. Im after support and advice. My gp is rubbish. Im in Sheffield which I cannot fault their hospitals but everything is taking time due to covid backlog. Im just after someone with similar situation to talk to. I've left my poor health for nearly a year without getting things sorted due to covid, anxiety and the feeling I cannot get an appt so gave up trying. I'm now wanting to try face this diagnosis. I blanked it out after finding I had cirrhosis of the liver back in may and with recent bloods and how symptoms arising- I really need to face this and not turn away help.
I'm sorry you're going through all this. I have cirrhosis because of an autoimmune disease, PBC. I was 41 and my youngest only 11 at the time. There are some really effective medications for slowing down or even halting the progress of the disease when they know which one it is. Often doctors can tell based on blood tests because of the pattern of the LFTs and which are worse than the others, or extra tests to check for autoimmune markers like AMA or ANA. For the patients that can't be diagnosed this way a biopsy may be needed to find the cause.
Have you been seen by a liver specialist doctor? It isn't right that they couldn't find a cause so concluded autoimmune. Each disease has its own way of diagnosing and treating. Usually it would be put down as cryptogenic or idiopathic as they keep looking for the cause.
Cirrhosis isn't necessarily a death sentence. When the cause is found it can be treated and progress stopped and people can live with it for decades without getting anywhere near needing a transplant.
You need to push for a proper diagnosis. What tests have you had so far? In the meantime we are here if you have questions or need a hand hold.
Hi I have many long term illnesses which affect my immune system. I've been checked for cancer via the camera down throat and bloods ( cancer antigen 125) hepatitis b & c, bacterial infections... everything comes back negative. I had brief talk with liver specialist about things which can affect liver. When I missed my US scan I had a call to rebook via hepatology. I asked if my bloods were ok when taken back in may ( this was when had camera down throat) and he just said he will discuss when have had the US scan. I have recently been throwing up food I eat and bloated all time. I'm always feeling sick, right side down my shoulder and arm hurts ( dull pain) and have red pin like spots all over right foot. Gp ordered all my bloods including the cancer antigen and checked stool for a bacterial infection but both were negative. I did, however find out my LFT were much worse than may and my platelets are 92. I've been diagnosed with thrombocytopenia but only found this out friday and haven't discussed with gp as yet.
All the liver specialist has told me is I'm diagnosed with cirrhosis of the liver and its rapidly declining. It's as much as weve got with investigation. I know I have an enlarged spleen and that diabetes can have an affect on liver, especially after viral infections.
I'm just after someone who understands and to talk to because it's a massive burden on my kids. I've lived with long term health conditions for over 15yrs and I try to just get on with my life rather than complain. But if I am told the worst I fear for my kids. I feel the need to try plan to ensure if anything happens to me they will be ok. I dont have family support or friends... due to lockdown and suffering a bit if depression I isolated myself from everyone and anyone.
This really is tough and being in this limbo place of knowing something is wrong but not having all the details is worse. You need to think of your mental health too, so try to put it out of your mind as much as possible. There is no point trying to plan the future when you don't know where you are right now. It is a good sign that you can wait a month for another ultrasound, I was called in to have one the next day after my bloods came in at 8x max. I had a fibroscan within a week and bone scan and Endoscopy after.
Your platelets are low, but not dangerously low. Thrombocytopenia is the medical name for it, rather than a diagnosis. The cause of it can be a number of things, including an enlarged spleen.
Normally liver disease is slow to develop. Like you mine is labelled as fast progressing because I went from normal bloods to cirrhosis in three years. I don't think you're being treated well, if they think it's rapidly declining why haven't they done the autoimmune bloods for AMA and ANA, why not a fibroscan, why aren't you booked in for a biopsy? It's very unfair on you to tell you such scary things as rapidly declining but then not hurry you through the tests you need to find the cause. Most AI liver diseases can be successfully treated. I would be complaining to PALS.
It is a lot to take in and your fears for you and the kids are completely understandable, but I really hope they are unnecessary. I will be thinking of you.
Hi I'm sorry I wasnt very clear. I had some bloods done middle of April this year. Within 2 weeks I had an ultrasound, more bloods, fibroscan and the camera down my throat ( sorry cant explain actual medical term) unfortunately, when the liver specialist was discussing the diagnosis and options It literally went through one ear and out of the other... i blocked it out because over the years it's been 1 thing, then something else. I didnt think cirrhosis was a bad thing ( just seen it as another diagnosis) I didnt fully register at the time and tried to focus on my sisters wedding. It was only end July after talking to someone else at the hospital I thought "OMG". It would explain symptoms I've been ignoring. I missed my US scan end of july because I was scared of the results. I dont have anyone to come with me to appointments and I get anxious on long bus journeys. I didnt take it in properly till beginning of this month when the liver specialist rang me to find out why I didnt attend scan. He has re- booked it but when I wanted answered questions via phone call he just said he will call me in after scan and discuss further.
Went gp with symptoms not being able to keep food down and she thought a bacterial infection in gut so sent me off for bloods. I checked results via NHS app Friday when all came back. My platelets were 123 I april, now 92. I've lost 3 stone in just over 3mths from doing nothing to cause weightloss either.
Last year was bad for me and I was really ill with covid- then long covid- then depression kicked in. I missed many hospital appointments, didnt manage any of my illness and medication properly and just slept! Slept for England!
I fear I missed something important the specialist was trying to tell me when went for the camera in throat- I was so petrified about the camera I switched off completely and was on mute. I now have to wait till the US scan comes... 😥
Hi Hannah...I am so sorry to hear your story and I can relate to a lot that you shared. You are a single mum of 34 with 2 teenagers and you have a lot to deal with. Do you have help in the community including health professionals, family and friends who are aware of your situation?I suffer with Cirrhosis and I also have mental health problems that make dealing with your physical health...s**t eh? 😉 This site can be of great help for you in many ways...there are some people on here who have been through it and are going through it. I am a Dad with joint custody of my 15 year old son and somedays are tough right? But making him aware that some days 'I feel a bit dodgy' is huge for his understanding and it takes the edge off pushing myself to limits where my body my mind are saying ffsakes!! There are strategies of other ways that you can have discussions with your kids that eases that conversation. I am here if you need help on that. 😊 Anyway I hope this is of any help. All the best...Mark
Thank you Mark for your message. I dont have anyone but my kids. I moved away from my family over 15yrs ago. My kids are fantastic and they are aware if everything. My 17yr old son had said he will support me when I need it. My 16yr old daughter is struggling. She also has diabetes and anxiety issues so I try not to burden her too much. She does alot for me if I cant do something round the house. I'm a qualified teaching assistant but unable to work atm. Its difficult because my symptoms are not necessary via cirrhosis- I'm diabetic, under- active thyroid issues, nerve damage, sight issues, poor mental health, asthmatic, long covid, HSV 1&2 (embarrassing... a present from my ex) so its everything on top rather than just liver. I dont drink alcohol and not an overweight slob. My liver function tests keep coming back worse than last ones and no one can pinpoint the underlying cause but have said it can be due to poor diabetes control when had covid and whilst going through long covid. I guzzle insulin which isnt making a difference and now platelets are very low. So I think my concern mainly is having alot of long term illness and unsure which will be my sentence.
Unless you turn up for every scan and every appointment made for you, you will spend all your time worrying about may or may not be wrong with you. You must attend these appointments for the doctors to see the full picture, diagnose you correctly and treat you accordingly. The longer you leave it, the longer the delay for treatment. Good luck
Thanks for the positive words. It's not as easy dealing with these things on your own and having a low mood recently hasn't helped me. I know I need to attend these appointments. I dont have anyone to lean on for support, hence literally crying out now out of desperation...
You will get through this! 👌And the low mood is your mind's reaction to your physical illnesses and life in general. Low mood is there for a reason. And Hannah, I get it!Please make all your appointments even on a low day because without getting the answers you need about your physical health your mood will be further affected. Many people on this site have depression and anxiety which comes with having a chronic liver disease. It's like a dual battle but with the right treatment for mind and body you will get through! I have made several appointments recently and tbh they were tough but they are done now and I can focus on my son's start of his GCSEs...shit I remember those! And rebuild my life again for him and then myself. Lol...I do rabbit on when I get started.
Thank you for understanding! I know it's easy people telling me to attend appointments and not to complain if decide not to attend. The tests themselves are nothing- however it's the results which scare me and being in a consultants office on my own telling me I'm not well disheartened me. I dont exactly have anyone to confide in, no one to lean on for support or to outweigh neg and pos and sometimes I cant remember things consultants is saying because I'm still thinking about his first sentence.My daughter just received her results fir GCSE's last Thurs- passed everything! Was so happy for her as shes not had it easy either, bless. Best bit of good news in a while knowing she can have a good future!
Well done daughter 😀Could she not go with you and hold your hand when you go for the results of your tests? I was with my Mum when she was diagnosed with cancer. We also took a notepad and pen to write down everything we needed to know. Everything was so much clearer and helped us face what she was going to go through to cure her.
Hi I understand what your saying but I'm scared that my daughter going with me may make it more 'real' for her to fully understand and take on board. Shes always supported me as I've supported her- do you think its a bad thing her being more aware? Her dad seems to think its selfish of me to put her through hospital appointments and test results...
I do need advice on this because I think my kids are mature enough to understand things and support eachother but their dad thinks I put too much on them. They are good, happy kids and have a great career future ahead of them- I cant not feel guilty for leaning on them more these days
Kids can't be protected from all the bad things in life. Life isn't all fluffy clouds and rose petals. My children had to watch my husband, their Father, become severely ill from alcohol abuse and died when they were 11 and 17. They have come out the other side stronger people, rich in knowledge and living their lives to the full.
You might find being more involved actually helps them. My daughter finds that being able to actively help a little makes her feel useful and more in control. My son nearly 15 came to one appointment with me this year and after he said he felt better about it as he saw that everything is calm and routine in hospital. Before he saw me disappearing off and imagined it to be scary rather than boring waits and unruffled doctors. He's now taken it on himself to be the boss of my meds and is much happier now he isn't so in the dark. It was the unknown he found upsetting.
I feel awful saying this but my kids do alot for me already. I often feel very weak and tired so I do what I can. My daughter helps with housework and sorting out my medication and my son will help walk dogs and will do shop runs. I do get up and will do some washing, cooking whenever I can and we all chip in so kids understand from that aspect. I dont like to panic them but they do offer to attend appointments... I just prefer to get the news myself so can explain it in another way for them. I haven't kept anything from them but haven't alerted them either. I'm very proud of my kids- they're fantastic and we help out eachother!
You shouldn't feel awful! You're a family and being there for each other is what matters. Your kids sound wonderful. I'm sure they wouldn't offer if they didn't mean it.
Oh Lola, you poor lady, you need to talk to your doctor and your mental health and your symptoms, I would hope your kids are old enough for you to explain fully your diagnosis and hopefully that will take some of the anxiety away. I had decompencated liver failure and once I told everyone my problems, I was able to concentrate on my liver health. Ask to speak to the liver dietitian or the community dietitian. Good luck, I’m here if you want to talk .
Thank you! My kids are 16 and 17 and are very understanding with my health, I just dont want to pile every conversation onto them and thought to come here instead to off load. My son is absolutely fine, however my daughter is also diabetic, suffers with anemia and since covid developed an eating disorder and anxiety which has affected her socially. I cant be dependent on her ( it's too much for a 16yr old) shes focused on college next week and in a way helping her go to college had took my own stress levels away. I dont use antidepressants and haven't In years... my kids ( and dogs) find a way to give me a reason to busy me to dig myself out. I felt past few weeks I've taken alot on board and am now ready to tackle things. I'm accepting I cant do certain things but looking also at the things I can do.
Thank you again for taking time to listen and reach out. ❤
I hope your ok. It's not a nice diagnosis and I guess when were all told we are ill we react differently. I think I was still suffering with some sort of depression when denied my health but I'm trying to accept facts.You sound like you have some great support where you are! I'm glad you have that, because theres nothing worse than going through this on your own. Thank you for your reply ❤
If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 10am to 3pm on 0800 652 7330 (excluding bank holidays)
We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers). If you would find it helpful to speak to others with shared experience, you can register to join a group here
Some other information on our website may also be of some help to you. This page has suggestions of questions to ask your doctor, including a specific document you can download for those who have been diagnosed with cirrhosis: britishlivertrust.org.uk/in...
This page contains information and advice about where to find support when looking after your mental health whilst living with a liver condition: britishlivertrust.org.uk/in...
Hey Lola, you’ve got so much on your plate it’s no wonder you’re feeling overwhelmed. All of your illnesses would make you exhausted on their own let alone combined. Both hypothyroidism and diabetes are autoimmune diseases. If you have one you’re more likely to have others so I would expect your doctors to be checking for autoimmune liver diseases.
You’ve said you have no one to support you apart from your children but I bet that if you confide in someone they would surprise you. You said you’re a teaching assistant so if you work in a school you should have access to an employee support programme and colleagues may be able to support you if they know what you’re going through. You really need someone to support you with hospital appointments - to make sure you go and to take notes. I know it’s hard but you really need to go to the appointments, because it can affect eligibility for treatments. No one remembers what doctors tell you at these appointments because were stressed and don’t take it in. You need someone else to listen and note the important bits down. If your son has volunteered, take him up on it. Get him to take notes. I’ve found the diabetes nurses good for support with my kids and diabetes, they are usually in the clinic appointments and can explain things afterwards. I don’t know if it’s the same in adult clinics. My liver nurse is fantastic and I can phone her if I didn't take something in. If you don’t know whether asymptomatic is diabetes or liver related ask both nurses. Your kids may be able to get support from school/ college to help them help you. You’ve taken the first step by asking for support here, keep asking - people may surprise you. Think about specific things people can do to help you otherwise you might get unwanted help and be put off asking. My grandmother was excellent at this and always seemed to get what she needed!
Thanks for your message! I've been down the route of employee support, sick pay... going back part time. They were nice about things but I knew I was pushing my luck trying to stay- I couldnt focus, turned up tired and no energy, which leads to becoming irritated and moody ( not good around primary school age kids) brain fog, unable to control my bladder from toilet runs, hospital and doctor appointments, catching virus' from the kids etc. I knew I had to go and I knew the staff thought the same- just too nice to say. It made me angry and very low mood at first.
The only support I have is my mum. I cant talk in depth with her of my issues as shes a paranoid schizophrenic and she cant handle stress. She also drinks under stress so I dont off load onto her. We talk daily about weather, kids, tea etc which is nice to have that bond as 2yrs ago I hadn't spoke to her in years. My dad has never liked me... hes a snob who thought I got married and had kids young, which was disappointing. My brother lives in amsterdam and doesnt communicate well. Rings prob twice a year to make sure I know hes still alive. And my sister... self centred who doesn't want to know if it's not about her amazing life! I tried last week talking to her and the call was literally " I'm great! Kids great! Love my perfect life! Speak soon" I'm not close to siblings or dad.
My kids have always been fantastic but I know sometimes it's all I seem to talk about. I do listen to them but me its nothing new. I know they are here for me but being on this site means I can moan to you guys rather than moan to them.
My gp makes me feel like I'm hysterical, diabetes nurse I feel cba with me and the liver specialist wont discuss anything till I've had my US scan. Prob because theres not much he can tell me without the scan. Just waiting..... patiently till the appointment comes. I thought about letting kids come with me but if the specialist says something a bit scary- I dont want my kids to hear it how he interprets it. Gosh it scares me, I dont want kids to freak out!
But thanks for advice. It means alot to have people who understand risks, results, complications, symptoms and emotions. I find unless someones been through it, people dont really understand.
OhHannah, I’m so sorry. I can understand how you felt about work. It’s horrible feeling that you have to give up because you know you’re not functioning and you feel like others have noticed too. When it’s all down to health issues that you have no control over.
I can also understand you wanting to protect your kids.
I don’t think you’ll get any news at the ultrasound, it’s more likely that the consultant will talk to you about the results at your next appointment with him/her. They may want to do more tests e.g. a liver biopsy if they think it could be autoimmune, so be prepared for it to take a bit longer to get a diagnosis. But then your on your way to a treatment. I know the waiting is hard but I found that getting a diagnosis that explained why I was feeling so rubbish helped. I hope it will help you too. After that it’s learning to pace yourself and spending energy on things you enjoy. For me that’s gardening and seeing my now grown up kids.
I'm doing ok. I've accepted I cant be in that particular work environment but I'm still trying to complete online courses in other subjects so hopefully I can follow a new career path when feel upto it. I'm seeing it as a new career move- a positive new chapter.
I'm hoping the scan will show how damaged liver is so liver specialist can move on and give me something to work on. The waiting game is the worst part- just not being in the know. Thank god for NHS app so can try nosey.
That’s a brilliant attitude to have. I was able to work in the civil service for many years with supportive managers who allowed me to adjust my working patterns to suit my needs. I’m sure you’ll find something less physically demanding that suits you better.
When you have cirrhosis it is absolutely routine to be monitored via ultrasound every 6 months. Not to panic you but HCC is Hepatocellular carcinoma (HCC ) or liver cancer, they scan you every 6 months to check the liver for changes, lumps and bumps etc. That is not to say you have it but to make sure that IF it arises it can be treated early rather than lying undetected. My hubby is having his 6 monthly scan/screening on Monday - twice he's had to have a further follow up MRI just to check out some other wee things which the US showed up and thankfully the lumps were nothing to be concerned about.
The 6 monthly ultrasound also keeps an eye on portal veinous flow, your kidneys and other abdominal organs plus checks for the presence of any fluid/ascites.
It's a totally routine scan and you'll probably now have them every 6 months.
Aww thanks for that Katie. I did see on google something to do with cancer but I'm not worried about that. My last US scan was April 2021 ( after had covid) and didnt show any cirrhosis so to develop this less than a year later is making me anxious of results. I'll let you know how I get on once have scan!
At my last 2 ultrasounds. The sonographer said that they only now look at the liver,spleen, and to check for ascites . Consultants said they weren't interested in any thing else. Eg,kidneys, pancreas. Consultant said they were being overwhelmed with to much detail ...maybe that differs from 1 nhs trust to another. Chris
I'll ask questions at my scan. Just phoned up to follow up appointment... they are still dealing with urgent referrals from June so I'll not get an appointment for a while. I'm not complaining because I missed my last one- totally my fault! I'll be due more bloods by then so can at least see how my bloods are getting on!
Don't be surprised if the operator doesn't offer any comment at your scan, it has to be reported back by a radiography doctor and compared with your previous scans which they won't have at hand on your scan day.In 10 years no sonographer has offered any comment at my hubbies scans. We do get a copy of the scan report though via his consultant's secretary a couple of weeks after the scan.
Yes love. Usually the bloods and ultrasound are done approximately the same time....so consultant can look at both.....and see what outcome there is!!!. I'm waiting for my results.....but not heard anything yet. Playing the waiting game..take care love.chris
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