Encouraged but a little confused about UKELD

[AnxiousPete]

Apologies for the long post but I just had a reply to my queries about recent blood tests because I didn't have all the test numbers in my consultant letter to my GP in order to calculate MELD / UKELD. He wrote this which I was mostly encouraged by but also a little puzzled - how is EVERYONE 49 on UKELD? I thought the score went up with the severity of cirrhosis and abnormal bloods and made you a higher priority for transplant ?

“So his UKELD is 49, but everyone is 49, his bloods are really fine and he is well compensated.

Creatiine 82

INR 1

Bilirubin 14

Sodium 137

These are all completely normal. I have no concerns”

My consultant hasn't received my gastroscopy report yet but that showed stage 1 varices (mostly quite small). I tested +ve for helicobacter pylori (which I've had before) and evidence of chronic gastritis. I've had reflux for decades and been on lansoprazole for 20+ years. I expect the HP and gastritis aren't good for the varices and wondered if the gastritis had flared up because I was told to cease the lansaprazole two wees before the gastroscopy.

I am wondering what sort of score to expect on the Fibroscan now but fingers crossed.

Someone told me in an earlier response to a post that you can access your NHS test results on line and I've applied for online access but my NHS app suggests this is for GP records not hospital based tests ?

Pete

[BritishLiverTrust1 Partner British Liver Trust]

Dear Anxious Pete

This is a matter that your own health care professional really is best placed to explain, as only they have access to your full medical records and test results.

Forum members will only be able to offer a non-medical opinion, which is probably not very helpful in this situation.

Best wishes

British Liver Trust

[AnxiousPete in reply to BritishLiverTrust1]

Sorry I am a bit confused by your response. I have seen many replies to posts on here offering advice and exlaining technical aspects of tests and processes. I have great faith in my hep team but comments and shared experiences in this forum appear to be helpful to many members ?

[Pasturesnew]

Hi peteYou should ring Dr's and speak to someone about your medical records, I did and although it took a while and I had to go and show my passport, I got full medical history. Hope this helps. BTW I'm in UK

[AnxiousPete in reply to Pasturesnew]

Thanks I have done this and am awaiting access but on the NHS app it only says GP records and nothing about hospital records. I thought from other comments I have seen on here that some people can access their hospital blood test results.

[AyrshireK]

I too am puzzled by that "everyone is 49 on UKELD comment" since a UKELD score of 49 is often seen or was previously the minimum score required for transplant listing in the UK. I am puzzled too at how a set of perfect blood results (which yours are) end up indicating a UKELD score of 49.

This really is something your own medics need to explain with all your records and results to hand. This is why BLT admin said no one here should really comment on results, it could fuel your anxiety further.

Perfect bloods and no signs of decompensation is great, I am puzzled by the UKELD issue here but it sounds like you are very well compensated so keep looking after yourself.

Katie

[AnxiousPete in reply to AyrshireK]

Hi Katie - thanks for your comments and explanation. I know from reading your responses to others, how knowledgeable you are having supported your husband with his cirrhosis and having contributed on here for many years.

I will query the comment with him at my follow up in a couple of months but thanks again for responding and I wish you and your husband well for hlcontinuing decompensation. The turnaround after such a bombshell crisis and diagnosis your husband experienced gives me hope for a longer prognosis than I first feared. I'm determined to make these lifestyle changes permanent.

Pete

[AnxiousPete in reply to AyrshireK]

Apparently I broke some rules by posting a link to a calculator that the admins have removed. I wasn't aware I was doing anything wrong as some others had posted me links to calculators before. I'll need to watch my step. I've put thise blood scores into several UKELD calculators with the same result. I will as my consultant to clarify.

[Roy1955]

My consultant made a similar comment.I am CP A Meld 6

He said "yes you have cirrhosis but currently it's not causing serious problems" " if we did the same calculations using perfect blood from a healthy person the CP and Meld would be the same as yours"

He also added that every time the result stays the same the life expectancy countdown resets to maximum.

[AnxiousPete in reply to Roy1955]

Thanks Roy that's helpful to know.

I'm not sure my Consultant uses CP measure

[Roy1955 in reply to AnxiousPete]

I think CP and Meld are part of the same result and are stated together.Sounds like yours will be the same as mine and are the best you can get!

Cirrhosis yes, knackered no!

Mine have been the same for 6 years and indicate that quiting booze stopped the cirhossis from advancing.

[AnxiousPete in reply to Roy1955]

Thanks Roy that's really encouraging. I don't think my consultant uses MELD as I think it's been replaced here with UKELD - I've not had a CP score but I can calculate it from my bloods. I am sure I will get used to the abstinence. Take care and I hope you me and all with cirrhosis have many more stable years ahead.

[wp69 in reply to Roy1955]

I checked my blood 🩸 results today and used the Childs Pugh scale , the only number that was elevated was the bilirubin , was discharged and given a score of CP B9 , but when I inputed the figures into the calculator it gave me a score of CP B7 which is a lot better , now im at a bit of a loss to this.

[Kristian]

I did a cheeky thing and put the formula for UKELD and MELD into a spreadsheet. Stuck in the various results and got the answer. What your consultant is saying about, "everyone being 49", is probably pretty acurate and is likely to be just a function of how the algorithm works. Some factors affect it more than others and affect bigger changes than others. You can literally throw a load of numbers in, but the changes in the end result only changed significantly when things like sodium and i think it may have been Creatinine went out of ranges. But the other inputs do make a difference as they are known indicators of potential mortality.

There's a few reasons I could see for that and its mostly down to the numbers and their changes as you stick them in the model. Just as an example INR may increase from 1 to 2, but Creatine could go from say 80 to say 120. There's also some multiplication factors in there too that would affect it. So a changed in sodium for example will give a bigger number than say a change in INR. They're also based on the logarithm of the numbers so when you do that you can see how some of the changes only give a very small difference in result.

It may also be a similar situation where, as numbers get the 49 level or below the 1 year survival probability remains pretty constant. So it may just be that they simply report it as 49, in the same way that the kidney folk give normal kidney function as greater than 90. That is though a bit of a wild speculation, so dont take it as read, lol. I am just guessing there. But hey, seems plausible in my head at least, but I could be, and probably am, very wrong.

I think it is worth asking the question at your next clinic though. It'll be interesting to hear what the doctors interpretation of it is. But with your results still being pretty good I'm sure there is little to worry about when it comes to short term mortality, which in the end is what these models are intended to help ascertain.

Hope thats helpful. They are just my thoughts. I'm neither a mathematician or medical person. Its just what I saw when I played with the numbers. Unfortunately I no longer have access to my little spread sheet, so I'm also relying on my less than perfect memory too, lol.

[AnxiousPete in reply to Kristian]

Thanks Kristian - very helpful