Getting Results

[Splodge60]

Why can I not have results of tests, stages etc from my liver man. Some of you do. No consistency. I was diagnosed a year ago by him with Compensated Cirrhosis. A few days later he rings to tell me I have Hepatic Encephalopathy. Is this not Decompensated? Getting results from him is like getting blood out of a stone?????

[Hidden]

Yes, I thought it was. I think Miles gave symptoms of decompensated on the forum and yes HE is one of them. You could change consultants but that would then mean a long wait or you could ask when you get there could you see someone else. Will someone go with you to your next appointment? Love and hugs Lynne xxxx

[ThreeSmiles in reply to Hidden]

Ah - thanks for that Lynne. Did I? - I can’t remember, can’t think why I can’t- oh wait - just a minute, could it possibly be the after effects of all those HE episodes.....Umm yes..... 👎

😀

Milo

[Brightstar15]

I was was the same until I made myself heard. I will ring his secretary when I need my result. And I ask them for a letter or a ring back. If all fails go to pals every hospital has one and pot in your concerns, and complaint. I am in process of doing so because I have been brushed of by many consultants and GPS. Like you I have many complex health condition but won’t do patient to patient referral. Keep being pursuing them everyone needs answers regarding your health. Kind regards Anna xx

[carllovatt]

i would guess the readers with their own test results are private or american

also are you a DR to understand what they mean i found it best to focus on bilirubins and ammonia levels and take notes in the consult with the DR

[ThreeSmiles in reply to carllovatt]

I agree with you because I went through 4 years with never a mention of actual test results - but like you I tried my best to remember what I was told but in practise my wife was my real memory bank 😀👍.

These days though you can have access on-line to your doctors records - just ask receptionist - and also selected Hospital records - ask Consultant to organise for you. At QEHB they give you a leaflet and send you a password etc. Worth doing imho.

Miles

[Yellowsydney in reply to carllovatt]

Hi I'm in UK and get all my test results, anything from GP are in patient online and from Addenbrookes are on mychart. Before they brought in my chart I always emailed Addenbrookes and asked for all results

Hilary

[Splodge60 in reply to Yellowsydney]

What Chart are you referring to.

[Yellowsydney in reply to Splodge60]

It's Addenbrookes MY CHART app, can communicate with doctors, get results, get sent appointments.

[Splodge60 in reply to carllovatt]

I guess you may be American and don’t understand some of our Consultants in Britain. Example: after waiting 4 months last year, to speak to any medic, I was still not able to get the answers to some of the questions I had for the Consultant. It was 4 months from discovering my diagnosis of CIRRHOSIS on Patient Access,!!! before he could see me. My questions were only answered by him with a hospital administrator there (as I made a complaint). My questions to him were typed by me to enable clarity. I have to write everything down now!!!!! He gabbled his answers to me so quickly that I can hardly remember anything now. I learned absolutely nothing from him. Everything I have learned I’ve had to search by myself. I do this by checking intermittent test results that I obtain by default with stuff I read on the internet and books. I have, even now, only got a limited understanding of all my conditions simply because Consultants do not tell me things, any things, unless I remember to ask them. However my memory is now terrible. I want answers like ........is my liver compensated or de-compensated?

I have several symptoms of both. What stage is my Cirrhosis? Knowing this would assist me in planning my life (and death), which is important to me but I do get it is not important to everyone! Knowing test results would help me understand what is happening to my body. Why have I got many co-morbidities. The Consultant and GPs cannot or will not help me, so I am left with no option but to do my own research.. I want answers. Why is that so difficult for people to understand. I have been progressively ill since 2002, when I was first diagnosed with Diabetes and a year later with NASH. I have been informed that I cannot have a transplant, so, all I can do is spend my time wisely by finding out what the past has got to do with the present and thus the future. Will others be able to learn from my stuff before I pop my clogs. Am I being unreasonable, obsessive, paranoid, wasting my time and all other negative comments thrust at me over the years? This is the only place I can share these thoughts but I can’t if I am going to be adversely judged on here as well.

[Splodge60 in reply to carllovatt]

Actually, yes I am a Dr but Ph.d and a frustrated medic!!!!! I work hard to find out what the jargon means and am lucky enough to know where to go for some things. However, all that having a Ph.D tells you about someone, is that I know a great deal about VERY LITTLE. I am getting to know a lot more about Liver Disease from personal experience. I am no EXPERT though on this subject. Only someone who is can share with you the nuances of variation in blood results.

Because this topic has not been researched well enough or for long enough, I hear the same mistakes being made by my Consultant as others have made for donkeys years!!!!! For example, my Consultant keeps referring to me having NAFLD, otherwise known as Fatty Liver. Yet, I was diagnosed with NASH in 2003 after that same Consultant himself did the Biopsy.

Please note: NAFLD is the name given to your first blood test that indicates you have Fatty Liver Disease. It does NOT give any idea how long you have had it or variations of it. Probably everyone who is overweight (and who does not drink, like myself) will be carrying a good supply of this disorder around with them. However, in itself it is no-where near as serious as NASH. Also, not everyone with NAFLD will go on and develop NASH.

NASH is the form of Fatty Liver that, in some people (please note - ‘only some people’ - and they don’t know who or why) it goes on to destroy the liver, is highly dangerous and usually a precursor to Cirrhosis and/or HCC.

Again though, the experts are only just really beginning to understand some basic aspects of the progression of NASH. For years and years they and others in the medical profession have marked my abnormal NASH/LFT results (which have had my GGTs between 1000-2000), as “STABLE”. How, may I ask, do they define such a comment? They have no idea when Fatty Liver first began with me? They don’t know how it progressed to NASH?

They only discovered the Cirrhosis x 17 years AFTER the NASH diagnosis (and only then when I pushed them to let me have a Fibroscan test). I was expecting Fibrosis, so was shocked to learn it had moved on to Cirrhosis. When did I have Fibrosis and when did the Cirrhosis commence during those 17 years? No-one has any idea because I was not monitored adequately at all and neither do people seem to want to follow people up adequately.

My liver was dramatically deteriorating all the time during those 17 years when it was regarded as Stable.

Please do not allow any medic to tell you again that your LFT’s in relation to NASH, (which are abnormal like mine) are in any way stable. The same thing is happening all over the world, even now.

Researchers have learned that many of my other health issues (like Diabetes 2, Metabolic Syndrome, etc) are significantly related to progression of NASH to HCC. Indeed, NASH is taking over from alcohol as having a higher mortality rate, when associated with Cirrhosis/HCC) and is moving up the mortality ladder faster than any other health condition!!!!

I hope this information helps some of you to understand what you are up against and why? Good luck.

[confused71 in reply to Splodge60]

OMG I cannot believe you had to go through all that rubbish --- I had to diagnose myself when i had my liver biopsy in 2019 in 2017 i had fatty liver --just lose weight and exercise -- I was supposed to be seen 3 months later as I was diagnosed with Alpha deficiency at the same time --again had to find out myself what that was . Because I was left 2 years without an appointment instead of 3 months I had progressed from Fatty liver to Nash ---I cannot describe the anger I felt so goodness knows how you must feel . I do not understand why when you are diagnosed with fatty liver you are not given any information on how it can progress surely its better to prevent in the early stages ,Think of all the lives saved and costs to NHS further down the line --a little bit more time given at the beginning --we would then have a choice of what we do

[davianne]

Hi Splodge,

You have a right to see your diagnosis appraisal and test results. There is an app called Patient Access, which you can download on the Ipad, or log into on a PC to get the results etc. Just ask at your GP surgery, and they will give toy a form to fill in, and you will get a password for access. You have to request to view all hospital documents, and test results. It only takes a short time for them to give access to your records after handing back the form.

I was told I have mild HE, but am considered compensated. I have varices but no ascites. Hope this helps.

David

[Hidden]

Good morning,

The reply you have had from David is correct, you are also entitled to a thorough explanation of results.If you feel this is not happeneing then it might be worth contacting the Patient Advice and Liaison (PALS) department of your hospital. Is you GP able to interpret results for you? The patient charter on our website tells you about the care you should expect and there is also a useful section on what questions to ask your medical team. The link is as follows:

britishlivertrust.org.uk/ne...

Good luck.#

regards

[Hidden]

Hi Splodge60

I too have online Patient Access and have copies of my medical notes and CT /MRI Reports too! Like other friends have said you are within your legal right to have access to your records.

Good luck my friend

Trish

[Laura009]

Just ask for them, you'll probably look at them and think what does that mean? So ask them. I've never had any problem getting answers to my questions, in fact they welcome it.

[Hidden]

It can help you to feel more a part of the process if you know what are your specialist’s concerns for your condition and what are the values/ numbers that show a shift in your stage of wellness... So it seems to me that you need to know the first part for the second part to be useful for you. If we don’t ask a specific question we just get vague noises from our consultants as they never have time to tell all the facts when they see you. If you speak to a nurse at BLT she will be able to tell you what are the direct questions to put to your doctor that will put you in the relevant picture. Ongoing, you’ll have test results that you may need to ask about, eg if any action needs be taken, or why not etc. A few times I attended follow-up appts without having a clue what was being followed up. It dawned on me that I wouldn’t go to any important meeting in any other area in my life without a clear sense of the purpose and the agenda. I don’t think I’m alone in this. I find doctors are very relieved to be respectfully asked a pertinent questions. If you ask one, wait for an answer until you get it. PBC Foundation has a document that sets out possible/likely questions a body with PBC might need to ask. I found it helpful and empowering where previously I hadn’t liked to quiz the doc to hard for fear of sounding rude! I hope this is some help to you 😅