What information on the liver and your... - British Liver Trust
What information on the liver and your condition have you been given, and from where?
BLTHollyDawsonVolunteer358 VotersPlease select all that apply:
There is a real need for specialist nurses in this field. I asked at Kings if there was access to one, and was told that it was only for patients having transplants, or on drugs or rehab from alcohol - but I did not fulfil the criteria. Yet my husband who recently died from a malignancy had an army of specialist nurses to turn to for advice etc - and I know that there are three specialist nurses available for breast cancer locally, for what is often a curable disease. This is a real post code lottery and some illnesses attract funding rather than other illnesses even though they are equally life threatening. I lobbied my MP about this but she never even bothered to answer my letter. Often the British Liver Trust and the internet are the only source of information.
My diagnosis was - "You have alcoholic liver cirrhosis, you mustn't ever drink again!" , it was I who had to ask my GP for more information!
If you have liver abscesses, even the British Liver Trust & the internet can't help you! There's lots of medical information, but there is NOTHING for patients. I eventually posted a message on HealthUnlocked and received helpful replies about liver problems in general, but I didn't receive any from anyone who has had liver abscesses.
My husband is being treated by a gastroenterologist, not a hepatologist - we've asked for a referral to one but have been ignored. The specialist nurse at our regional centre for liver problems didn't even bother to phone me back when I asked for advice - she just told the gastroenterologist that I'd phoned! Seriously disheartened by the NHS.
Gfmum1 I wonder if the reason there is little info on liver abscesses within hepatologist fields is that in medicine they are treated more as a surgical or general medicine issue, rather than a gastro or hepatology one. Most published research seems to be in general medical or surgical journals not gastroenterolgy ones.
That' s possible, but I think the main reason is simply that they're not very common. My husband's gastroenterologist is taking advice from the hepatologist at our nearest regional centre because apparently gastros don't normally deal with them.
Make an appointment to see the gastrointestinal, then demand a second opinion from a suitably qualified specialist. You have every right to do this so don't let them fob you off
I really appreciate the time you've taken to reply but we did exactly that & got precisely nowhere, despite repeated requests. The hepatologist took the view that, because he was directly advising my husband's gastroenterologist, he simply would not see my husband himself, and nothing we said or did got us anywhere.
Even getting an appointment with the gastroenterologist proved difficult, and in fact the gastro wrote to my husband this week to say there was nothing further he could do for him. This, despite the fact that my husband has still, nearly 6 months on, been unable to return to work owing to muscle weakness/sleeping a lot/fatigue. As he's technically self-employed (he's a supply teacher so no work, no pay) there is no occupational health dept to help etc.
One GP has been helpful, up to a point, although he has recently said there is nothing more he can do. He did refer my husband to a local service who have come up with a sort of rehabilitation programme, so we'll see how that goes.
Still seriously disheartened by the NHS - they just want to get you "off their books" asap.
Sorry to hear that, sounds like they are trying to avoid a difficult job they are not able to deal with. I might think about contacting my MP if I were in your position and had not already done so. This can be a good or bad thing to do depending on his/her political persuasion, technically as his/her constituent he is duty bound to represent your interests, and as all UK political party's profess to support the NHS and it's supposed free at the point of need policy. It could look bad for him/her if he/she fails to support you. Other than that the only other course of action I can suggest is that you contact a solicitor expensive I know, justice is not for ordinary people these days. I am so sorry for your troubles, but I really don't know what else to suggest.
Take care I hope your husband gets the treatment he needs ASAP.
Regards
I feel that I need more specific information on my diagnosis, albeit my cirrhosis is nowhere near as bad as a lot of people's diagnosis on here, but I do not feel that I have been given enough, upto date well informed information by my Dr's /specialist to help me feel confident in everyday life.. My specialist just tells me that 'oh yes you are doing really well, and' try not to Google as this just worries you more ' but when I haven't seen my specialist face to face for a prop conversation (I understand with covid that this is not always possible) since my diagnosis, I have only seen the ladies and gentlemen who have done my blood tests and scans, I just feel ill informed and think that a sit down consultation is much better as I think that you feel more relaxed and confident to ask questions, not like on the phone. I didn't think that you could ask for a second opinion to be honest, thank you for your information and I will be asking my own specialist for more help in the future. Good luck š
I hope my last reply on here will answer that there is no information on websites and hopefully you'll agree that there is - lots - we have to know what we are looking for then dig and dig!
Sorry, I beg to differ but unless the situation has changed since August there is NOTHING out there for patients with liver abscesses - and I should know because at that time I spent many, many fruitless hours searching. And I am no internet novice!
I agree that there's plenty of information for some liver ailments, but not for liver abscesses. I'd be quite happy to be proved wrong - if you can point me at a website which tells the story from a patient/carer viewpoint (e.g. how long recovery time is, what the lasting effects are, what you can do to help recovery etc etc) I would be grateful to know, because quite frankly the medical professionals we've dealt with haven't got a clue!
I'm really sorry gfmum1, the word abscesses probably went over my head and I'd just latched on the 'no information'
Yes of course you are right, there is information on other aspects of liver disease.
I didn't mean to upset you when I wrote that - but I've become somewhat obsessed/confused with finding out why my health has apparently gone downhill so quickly over last 3 years. All the different things I have, have their own complications but I do feel they are related, I'm just trying to prove it, with no practical help from French medical system!
Hi
Don't worry, you didn't upset me
I can understand your obsession with trying to find out what's wrong, I got more than a little obsessed trying to find anything which would help my other half! And I'm still looking, because 6 months on the medical profession have declared that there's nothing more they can do, and he still hasn't been able to return to work.
Medics in this country are far too overworked to spend too much time with anyone who has anything out of the ordinary. A French friend led me to believe that the French medical system was better (well, she would, wouldn't she?) so I'm sorry to hear you're no better off over there.
I wish you all the best & hope you get some answers soon.
Once I was verbally told I had Cirrohsis, I was handed the British Liver Trust Leaflet, and given a few pointers by the consultant, I.e. Don't drink...but that was it. I return for tests and check ups regularly but what frustrated me most was the lack of information about what I could do to improve my overall health and therefore preserve/stabilise my compensated liver for as long as possible.
I feel that having liver disease is all about treating the symptoms once they occur rather than suggesting prevention of any further deterioration. I too believe that this is an area crying out for specialist nurses. Physchologically, the impact of finding out you have Cirrhosis is a huge shock - for me personally it also meant that I had to abandon any hope of having IVF treatment (for many reasons, but all related to my liver disease) and therefore has left me childless. I've had to reach out to my GP for counselling support on more than one occasion otherwise heaven knows where I'd be now.
The focus in the NHS has been towards cancer and heart disease for so long and yet liver disease is now showing the most significant increase in new diagnosis, and it feels as patients, that we are the lowest in the food chain. There is no doubt that liver disease requires a higher profile in the media and more importantly, one that doesn't suggest we brought this on ourselves. For too long it has been highlighted that the liver will repair itself, so go on and abuse it......We all know that this is true only up to a point and there needs to be re-education of this fact.
I was told I have Pbc and given a leaflet for Pbc foundation who I may add have been wonderful.indeed it seems that I am telling my docs about Pbc rather than they me
I still have to educate health professionals about PBC, I simply say 'My body is attacking my own liver, it is not caused by alcohol or drugs. There is no known cause & no known cure.' I then point them in the direction of the PBC Foundation for more information. I have a great consultant who helped me learn through the years about the condition & I pass on that info.
Hi Hidden, I read your post with interest and have looked up about PBC as had not heard those initials b4. What I read on the Foundation website could be another piece to the puzzle I am slowly putting together regarding various health problems that have beset me from an initial diagnosis of MDS.
Now -I will contact them to see if possible to talk to someone there because that has now turned into a diagnosis of Cirrhosis (not alcohol/cancer related which is good. However, I,my GP and Gastro Specialist are all in France, so there are some language/cultural differences dealing in english/french between us.
All above is on back of initial diagnosis 2 yrs ago, followed by aneurysm/brain haemorrhage and now liver problem - and a lot of medical prescriptions! Drugs are not good for the liver surely, given again the variety of them I've been given to hel with BI side effects.
Hence my interest in PBC and Foundation. Do you have a special diet? Lack of appetite is one of my problems and when I do eat, a lot of it is quick snacks, I feel full after only 3-4 mouthfuls if I have a cooked meal in front of me. I eat to live - not live to eat. Any advice you can pass on re diet would be useful.
Hope your system continues to work well for you.
I don't want to repeat Nix105. I agree 100%.
When I asked for information on AIH my consultants team doctor told me to google it as he didn't have time to explain.
I have just lost my husband after him undergoing a liver transplant. My full story is on the british liver trusts link on here. I was left to my own devices when he became very ill at home. Searching out symptoms via the internet, so many errors where made. I am now wanting to leave my job in a school and set something up to help others. You hear all about the success stories of transplants, but what about when things go wrong? I know if I had had someone to talk to when my husband got ill I would of somehow been reassured. I want to set up some sort of helpline, charity, support group. Obviously if I leave my job I will still need to earn a wage to pay my mortgage and bills, but I am so passionate about this I want to do this as soon as I can. I also want to get adequate training in this field to advise and help others. Any ideas would be gratefully received.
So sorry for you xxxxxx I am 100% with you in this - I am a former 'reg nurse' - and have looked after my husband for past 3/4 years - he is still going through 'recovering' from transplant !!!! I know lots of the medical stuff and am willing to help xxx I also feel that so many areas are ignored or not known about !!!! Please get in touch if you want any help xxxxxxxx
I was told bout 2 months ago I have a 'viral' infection - not MDS, here in France where I live since 2008. I've known for 2 years I have a blood disorder that could compromise a AID and lead to Leukemia in 30/40 years. Last month was told not MDS, not cancer but possibly Viral Hep. Have had several mri's here since January.
7 Aug, had Fibroscop on, oesaphagus/stomach and duodenum. Other scans confirm my liver is scarred the specialist said.
8 Aug had big blood test, I also have Underactive Thyroid, diagnosed back in UK 2003. Results from blood test show I am negative for Hep B & C. Results page for Thyroscopy samples I do not understand. Specialist had said he would phone me to discuss test results when they were back from Lab. I may have to have a liver biopsy he said depending on results. He hasn't phoned and I don't understand the results.
Saw my GP yesterday. He looked at everything on his computer and said Specialist wants another liver another scan. He phoned hospital for appointment so 24 September I will have that. Also another brain Scan - I had a spontaneous aneurysm and brain haemorrhage Mar 2013, with no rehabilitation or help. Now I wonder if there is a connection, because left my ear had blood in it Sunday/Monday.
My vision has been deteriorating over the months since I moved from South to North of France [and had a car accident up here last November]. - an appointment I had to wait for months for, last Thursday said I have cataracts in both eyes, my left eye being the worst.
I feel like I am being paranoid now, associating everything from the initial blood disorder right up to the ear bleed, vision and the liver problem. What is worst, is doing it all in a foreign country with a different culture - I speak some french socially, not sufficient to cope with all these medical interventions and dealing with health employees, who don't speak any english, except for 1 or 2 specialists. This is why I have to rely on HealthUnlocked to try and unravel all that is happening, especially when all my doctor wants to do is pump me full of meds.
was aheavey drinker wa s told my liver would fail in 2 years if didnt stop .no drink now for 3 years
well done. x
I was given a printed booklet by the consultand after she diagnosed me with AIH/PBC overlap, but my GP really has no idea about these conditions, so like most I have had to resort to my own devices to learn more about my condition. I also find it difficult to get an appointment with my consultant..if it were not fort sites such as british liver trust and pbc foundation, I would be out on my own .
I had so much information given to me, especially by the consultants at The QUEEN ELIZABETH hospital in Birmingham. My GP went, and still does go out of her way to help me, she also took the time to learn more about PBC. No complaints in any area..
I received a leaflet ,I would have liked to see a nurse to ask more questions.
I have fatty liver fibroscan was 10.1 after
Weight loss and exercise now 7.1. My specialist told me she would see me in 2 weeks after checking my bloods tests again she told me to look on the nhs Web site for losing weigh,I may also need a biopsy. A few days later i went for xray on my hip, I told me I also had a app for a liver scan at the same time,I had no idea I hadn't received appointment.Specialist said nothing about a scan. After 2 months rang hospital asking a if I was due a appointment but told my next one was in 2 years.I was worried sick.
My GP told my my bloods are ok and to contact the hospital about the scan.
The hospital told me I didn't need a appointment for 2 years.I'm going to ask my GP if I can have blood tests every 6 months.
This site is invaluable,I have got so much info and help.
The leaflet about liver as great info in but we do need more info and help available..
I was told that I had a fatty liver after a scan a few years ago, I also have a gallstone that does not bother me, as well as being underactive thyroid, having had a ministroke, was also told to stop drinking alcohol, I don't drink alcohol on a regular basis, just special occasions. I have become overweight since becoming hypothyroid, thyroxine only helped a small amount, didn't help the tiredness or the slow weight gain at all. I know that some of my medication can affect my liver but gp doesn't seem interested. have recently had lft tests done 4 weeks apart because I had viral gastritis,and suffer from tiredness and a sore tongue(several years).Just had letter from GP saying I need another LFT test in a months time, no other explanation.
When my GP told me I had hep c she never gave me any information at the time..I was told just to take care of my health and I would be fine..I had to ask her to refer me to a liver specialist and she was reluctant to do so..thank god I demanded that she does refer me..In the end I found most of the information myself. ..I asked to be seen in Addenbrokes and they have been great in dealing with my concerns so far.
i'm being sent for a liver scan or fibroscan, don't know which yet, on my rheumy's insistence. This is because of liver enzyme problems possibly due to methotrexate. I've no idea what will turn up, so I've researched the possibilities myself. First stop, British Liver Trust website.
Bit scary,diagnosed with hep c 3 odd years ago at my local practise after asking for routine m.o.t. test-cholesterol/prostrate b.pressure etc.Called in for appointment last week because they noted high l.f.t..results-from hospital/liver unit-already dealt with in liver unit.Liver nurse had already explained an elevation was expected due to commencement of harvoni/riba treatmentExplained to G.P.nowhere on my notes was it noted I had hep c!!Had to fight for a flu jab-receptionist=no,doctor=yes-book at reception,receptionist=no,eventually-yes-grudgingly.It's not so much the right hand doesn't know what the left is doing-the right hand doesn't even know there is a left hand!!
I have Cirrhosis but am now searching for info about that!
Well all of the above really.
I was not given any information about the after effects of a long general anaesthetic and had a bit of a reaction to it I honestly thought I was going mad until it was explained to me that what I was experiencing was just the after effects of a drug I had been given its all here, rcoa.ac.uk/system/files... Nor was I told before hand that my lungs and bowel would have to be moved to gain access for the liver swap, obvious after the event really. So I found it most distressing when I had a severe pain in the centre of my chest, in fact I thought it was a heart attack, I was very frightened to say the least. The other thing which took me by surprise was a flare up of the ulcerative colitis that I had been managing myself successfully for years, again to be fore warned is to be fore armed. Apart form those very minor things I am delighted to have received a transplant and a reprieve from what otherwise would have been a death sentence and I look forward to a peace full old age with my loved ones near me.
I'm not in UK now, just across the channel. I have just listed a response to I think a new user to this community alikatty - who posted as she's just been been told she has a liver problem. The reason I mention it is because I just passed on some info to her re websites I've been using to get to bottom of my health conditions that have followed on in last 5/6 years or more. I use HonCode and Trusted Websites.
The reason I've done all my health research from birth to now, is because there appears to be a genetic link through TB my dad and me both had it. Him just after or during end of ww2 and me as a baby - my parents married 1947 the year I was born and split up when I was 18months old - when he was in a TB hospital. I had to have a TB infected neck gland removed.
What does this have to do with my Liver now, cirrhosis diagnosed in 2014 - not alcohol or cancer - tests have ruled that out! It could all stem from my op, recurrent infections over the years and only diagnosed as being Hypothyroid in 2000. Thinking about my metabolism, I was a chubby baby, toddler, youngster and even more so as an adult when I went into my menopause, although I v slowly had been putting on weight since after births of my 2 kids when I was in early 20's.
My research via ncbi.nim.nih - drugs.com and - Labtestsonline has given me info on organs and conditions, - the meds I've been on put on only over last few years - and tells me about my blood test results, what test relates to which condition I have, and what results can mean.
One conclusion I have come to is that the endocrine system and bloodstream now lies at the heart of it all. I was diagnosed as being autoimmune early in 2015, the lab linked it with my TSH Thyroid blood result. I'd asked for more than TSH on Advice on Thyroid UK community, because almost all doctors worldwide still only want to test for TSH. I asked for FT3 FT4, folate, Ferritin and VitB 12 also.
Last October on my 3rd visit to the Heptology OP dept., where I saw a different intern specialist for my cirrhosis, after an endoscopy conducted by 1st, I told her about the TB and potential effects on my whole endocrine system, she just tried to brush me off saying if I want holistic examinations go and find myself a holistic person. Instead I took to the Internet, as above!
one of the other things my own research showed me, after also having had a swollen spleen, and a bone marrow biopsy which showed up a blood disorder, is that bad infected, and over medicated organs leave toxins in the liver.
I was also, early last December, told by a local health authority Doctor that I'd gone to of my own volition and their request after I completed a 'health of the nation' questionnaire sent to everyone,p - told that have Thrombocytopenia - something my own research had also thrown up a few weeks earlier.
My own doctor, Haemo, Endo, and hepatic specialists take no notice of warning markers on my platelet and Leucocytes blood results, nor the 3 'phils' neutro/eosino/baso ones! as long as one or two other results are Ok, that's all they choose to look at. As long as the TSH is ok - then that's OK! which it hasn't been over last 3 blood test results) so doc has altered my dosage of Levo again, which has just thrown up the worst of results on my TSH blood test! There is almost none! Thyroid hormone is one of the most important the body needs!
My creatinine result, blood taken last Friday, is 5mg/l (norms are 6-11)
Test 14th of Dec was also 5, 23/9 was 6.
I ve also had a few MRI's next one due April before I see the Hepato specialist again. Not due to see the Haemotologist till June!
I don't usually self medicate, but for two months have been taking a natural product Arko Royal, made by Arkopharma and I put that down to clearing out my endocrine system and improved Leucocytes and lymphocyte test results from bloods taken last Friday! I just hope it may also start to help my liver. I won't even get into the brain aneurysm and haemorrhage I had 3 yrs ago!
Well if anyone has any thoughts on all that, please tell me! Thanks. I'm not medically qualified, just got a lot of dogged determination to find out WHY and WHAT is going on with my health - especially as I don't and haven't felt ill!
Hi holly. My new GP made appts for me to go to local hospital Feb 2014, and there I saw a Haemotologist, But while there for 8 hours, I had two blood tests, 2nd bone marrow biopsy, some scans, the whole works. ECG, height weight etc. then slowly month by month I kept being sent appointment to see or that OP department for MRI's, more blood tests, scans. I had started off seeing my French GP for help with effects of my brain injury and I'd had a car accident 4 days after moving into new home after a marital separation. So basically lots of stress. I also needed my Thyroid regular blood test done.
I was put on lots of different one by one antidepressants by my GP, - he decided to treat me for depression/anxiety early 2014 - decided It was the car accidents caused it - despite it being at a time when I was, by my choice, happily starting out on a new life. All the various tests came up with no answers, my 1st Haemo before personal problems, said I had a blood disorder and diagnosed MDS, I'd had a bone marrow biopsy Oct 2012. And ?cat scan which had revealed a swollen spleen.
At the hospital in 2014 An intestinal scan revealed A swollen organ, I wasn't told which one. After the whole day visit there was a 'case conference' about my tests and results from the Feb appt. I was not invited to go to it! All the specialists I've seen here speak English. If I had attended I may have remembered then about the TB op when I was a baby.
My father died in 1998 from a hematemisis, old TB (? Latent) he'd had a 2nd bout of it again mid 90's - plus stress related ulcers! The 3 things on his Death Certificate. I've shown copies of that to my Doc, the liver, Endo for Thyroid and Haemo specialialists - all in 2015, after I'd remembered the connection. My dad lived in Scotland, me in England and he died suddenly in hospital on the day I flew up there to be with him, just one week after his admittance to hospital. I telephoned every night, all the nurses would say is he 'confused' but OK! My flight was booked before he'd been admitted when I didn't know he was ill. He sounded fine on the phone all the time, assured me he was eating, and doing well.
It was only when I couldn't raise him for 48 hrs I phoned his neighbour, who called his doctor in. He wanted him to go to hospital, dad didnt want to! Doc phoned me from dad house, I persuaded dad to go saying I'll be up next week, l,ease let them go, they can feed you up - his own doc had told me he was undernourished! He'd lost a lot weight. As I have over last couple of years, but I needed to! I'm glad to say I'm maintaining it now over last 3/4 months,mbecause I think my Thyroxine is metabolizing properly now.
During the course of 2014/5 haemo had said not MDS but gave no alternative diagnosis for my blood disorder! Given my own research and health Authority Doc appt., we had both come up with Thrombocytopenia. It took her 40 minutes- me about 40 days after my lengthy researches.
The MRI's I think showed I had cirrhosis. That's what the 1st Onco Hepatic specialist said I had, after they tested me for Hepatitis through blood tests, and ruled that out. I don't know what all original,hospital tests revealed - I only got a copy of a MRI scan from my doctor several months later. It was the 1st Onco Hep who did the endoscopy and said there was a lot of infection around. He followed up with an ECG. my heart is throng and fine, as is my weight. My muscle power isn't though, I've basically been losing muscle and tissue over 2015 - I look like someone out of Biafra now, skeletally! I have purpura on my legs, crusty warts appearing on my back and a couple under my boobs.
I had a mammogram last summer and the radiographer said I had fluid internally at top of them. I asked my doc what that meant when Id thought about it, he just shrugged his shoulders! I cant see anything specific on the mammogram but I'm not a doctor!
All I know is everything seems linked, thrombocytopenia/ brain Jnjury from aneurysm/haemorrhage,hypothyroidism/ autoimmunity - which could be linked to Thyroid or 1st TB infected gland, vitiligo, cirrhosis.
I don't feel ill, but I am aware of and do feel the physical and neural effects of it all through my symptoms. I don't have an appetite, so probably don't eat properly.
I stopped taking all drugs except the Levo, I was put on propranolol in 2014, but within days it was really messing with my brain - it was like the effects of the BI had returned tenfold! That was when I decided to come off all meds - they were doing more hRm than good. Even specialist reducing the prop down to an almost minuscule amount didn't help.
Oh yes, I also had 2 cataracts removed start and of March 2015. Apart from the muscle tissue and continuing blood disorder with dropping platelets and Leucocytes that have as of last week shown an increase. My Platelets have gone from 52 000 UP to 69 000 (norms are 150 000 - 400 00) within 1 month - I put that down, rightly or wrongly to the Arko Royal natural supplement I've been taking daily. Perhaps the monthly liquid Vit D3 prescribed by doc also helps me and my liver! neither of them nor Levothyroxine are helping with the hair loss and dry skin! I have no gastric juices, which may explain the lack of appetite, cos my tummy doesn't rumble to tell me I'm hungry! The heartburn stopped not llong after I started on Levothyroxine in 2000 in UK.
Sorry if I've jumped all over the place, all part of neural affects it's having on my system. But I am snow thinking I should have come to this community in 2014, not only now. I did post something once - but with short term memory loss, non working pc's I really lost contact with,HU.
I still get confused as to which post I comment or reply on, on the 3 comunities.
PS my hospital appointments and tests have been at Le Mans in France. I have to use HU for support in medical matters.
The few English I know here in my new village don't even begin to understand about brain injury - I can walk and talk - to them - same with my Doc. So what's the problem? I don't even tell them much about the rest of it anymore - only the doc knows - people who are hale and hearty can only relate to broken bones and a plaster cast - they can't see the rest that goes on inside our bodies and brains.
Shirley.
I was diagnosed with PBC by a consultant last year. The only information I received was in a letter which said that there is no cure but taking a drug called ursodeoxycholic could slow down the progression. I was left to resort to the Internet for more information. The PBC website was very helpful with information from people in a similar situation but there is still a need to be able to speak to a professional.
While my husband has had excellent care from his consultant about liver disease - her time is very limited. It would be great to have someone we can ring up to ask about day to day problems such as fatigue and diet. When my husband had hep c - he was lucky enough to be cleared of the virus last year - we had excellent day to day support from specialist nurses.
I read all info i could find on internet
I did lots of research on the tinterweb. I find that the best way for me as I can take the time to take the info in. I have received info from my consultants verbally but retaining that info isn't always the easiest. The way they give info at the transplant assessments is good, and the info packs you get at that stage are invaluable.
I just wish drs took more interest in how your feeling even when bloods are ok ... I have PBC /AIH and feel pretty rotten most of the time. And when I feel really bad I dont go to the drs anymore as they just say bloods are ok your fine .
