I am new to visiting the gastro/liver nurse at hospital and have been twice once in November and once this month. I was advised at the last visit that I had moved to compensated. I asked about getting the results and was advised I would only be contacted if there was an issue. Is this normal for UK hospitals. Was also advised 1 more visit in January and if okay will bemoving to 6 month visits and fibroscan annually. I think the fibro scan was 7.9.
Sorry about the long email but the NHS doesn't seem to part with information easily
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Oasisman
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Six monthly checks is par for the course once you are stable/compensated. But, make sure you have a contact for getting advice/seen if anything crops up between appointments.
Thanks for your reply. I am near Glasgow. I would like to know the numbers as I am nosey. Will ask at the next visit in January and if that is okay will be 6 monthly visits
Hi, just seen your post...I have been in a similar position regarding having a copy of all the results. I was diagnosed around 1 year ago with cirrhosis and I've only just managed to get access to these yesterday! Everytime I either asked the hospital, Consultant, doctors, surgery...I was just getting passed about about for months or they would just look really confused as to why I want them? Eventually I threatened them all with legal action if they refuse any longer to let me have a copy of everything, and guess what? I can now go on the NHS app and view everything that I want. Just phone your surgery, that's who has to activate it on the NHS app, so you can view. I'm guessing they didn't want me to see them, as they got carried away last year and said I was about to die and to give up drinking ASAP. Now looking at the results...they was high, but far from what they was making out. Good luck with everything, and Happy Christmas
I am in Cambuslang and go to hairmyers for my checks. But have made big strides in a relatively short time by all accounts. I also had septic shock in the hospital and in recovery for that. Was an eventful year 2023. I hope everything works out for you. Take care
The liver is an amazing organ. It’s great you are doing so well. It sounds as though you are moving to a much more normal regime. Twice yearly bloods and ultrasound are the NICE guidelines for cirrhosis as well as an endoscopy every two years. It’s brilliant that you are compensated and a very good sign. I was diagnosed in March 21. I watch my diet and exercise. Absolutely no alcohol. I recovered relatively quickly and have remained stable ever since. I live a normal life and feel incredibly well. It sounds as though you are on a similar trajectory.
I get my blood results, from GP on system online or nhs app, Addenbrookes has mychart and I get all results at soon as they are processed however my local hospital is a nightmare like you I'm told I don't need to know and they refuse, I explain I keep spreadsheets of my results and still told no, there is 1 consultant that happily gives them to me. All I can say is keep pestering, email liver nurses. Hilary x
I live in Scotland and I am not sure if the app is available here. I can raise a SAR (subject matter request) directly but I would rather just be given the information or have the ability to access it.
I will have a visit in January and enquire further and as previously advised make sure I have a contact if needed.
I was initially diagnosed in August as decompensated but went into septic shock and ended up in hospital for 6 weeks. Fast forward on to the November appointment with the nurse and bloods taken. All were moving in the right way and ALS was normal.
At the December appointment had first fibrosis scan and fat content was good, can't remember the score and the other score I think was 7.9. It was then the nurse said that I was now compensated.
I haven't received the blood results for December and haven't heard from the hospital so as the nurse advised there can be no issues.
Sounds like sepsis was a seperate issue, you don't seems to have any (serious) liver disease.Either your livers made a miraculous recovery or your first diagnosis was incorrect.
Certainly sounds like you were seriously ill a couple of months ago!
Thanks for your reply and I am trying to get my head around the decompensated/compensatediagnosises.
I was admitted for jaundice and was due a biopsy. Due to the catheterisation I caught septic shock and was treated for the sepsis and deranged blood results. My bilirubin was 36 in hospital was 29 in November and the blood results were moving the right way and the ALS had returned to normal levels at the according to the liver nurse and that I was now compensated.
I wasn't advised the fibrosis score but was advised CAP was good and the fibrosis results indicated cirrhosis/scarring. I did receive intensive care for sepsis and liver functions first in the ICU unit the the intensive care ward. The nurse also advised no hep B or hep c was found when tested.
Thank you once again for your reply. I will be able to ask the questions so that I know where I stand.
Here in the US, it’s the law that patients can see their records. In fact, we I go to any doctor I can see all test results and read all the doctor’s notes. Sometimes the patient sees test results before the provider.
It can be a bit hit and miss with test results. It varies between hospitals and, can even vary between specialisms in the same hospital, lol.
The kidney team at my local hospital you had access to all the main test results through a 3rd part computer programme that was updated each day with results. However, not all hospitals used this. The kidney team also listed all the results in the letters they sent to the gp, which I always got a copy of. So got them that way too, especially in the years before the computer programme was released.
The gastro team were the opposite. They didn't use the online system and didnt always include blood test results in the gp letters. And, when they did it wasn't always a complete set.
The theory behind this was that unlike kidney disease, you couldn't really stage Liver function as a percentage of function in the same way. There was also some element of anxiety reduction in there too. I dont think they wanted patients jumping to wrong conclusions, lol. Fortunately I could get my results through the app anyway. The hospital lab didn't differentiate where the tests originated from, lol. If they were done in the lab and you were on the system they got uploaded.
From a personal point of view, I think the gastro team approach was entirely wrong. However, having seen many posts on here about blood tests I can absolutely understand their point of view and the merits of their theory. A little knowledge can be a dangerous thing without fully understanding the context. It can lead to unnecessary worry, which definitely does not help. So I do have some sympathy with them. But, as I said, I think they are wrong. To me, seeing the test results was more reassuring. I didn't have a formal diagnosis of the cause of my disease so it helped reaffirm it wasn't all in my head and I wasn't just wasting everyone's time. It also helped explain why I was feeling how I was. So, for me, I think everyone should have access, for me the benefits of knowing certainly outweighed any risks and was a real benefit to my well being rather than a hindrance.
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