have had Pbc for 18 yrs and 2 years ago had a fibroscan. At the time I just remember them telling me I had advanced cirrhosis but didn't pay much attention to the scores. Talking to others with liver disease prompted me to ask about my score at recent consultant appt but as was longer than 2 years they couldn't tell me then because the system has become digitalised since 2014.
So I contacted the con secretary who sent me these results ........not sure which is the relevant score
57.2 kpa.....iqr15.3s
Just interested where I am on this chart
Repeated after 2 months 38kpa.....iqr 17.5
Can anybody throw any light on this please?
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spoul
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Hello spoul.
Not had fibroscan and I've been diagnosed with PBC almost 6yrs now. (Out of interest where did you have yours. I am in Lancashire and think Leeds might be the nearest with one of these.)
Well looking at the chart and this is hazard a guess, would the blue lines going down be your result I wonder as looks about the number 57 mark. Plus I would go off the Chronic Cholestatic Disease line as that is what PBC would come under I am sure. On a tv programme earlier this yr the presenter was having a liver scan and his number I recall was just under 5 (as it went by a 4 point something). At the time he was said to be OK so I think maybe looking at the chart, wouldn't it go by some sort of 'traffic light' system at-a-glance.
I might have interpreted wrong but think the colour code down the side also equates to something additional to the scoring.
There are also asterisks on the chart of which there are no explanations I notice and in this case it might perhaps be better to have a professional opinion as to speculate.
I'd be inclined to take a print out with me to the next consultant appt and ask what it means.
I'm in preston peridot and had fibroscan there. They said I wouldn't have another as I'm stage 4 so can't get any worse but just found the 2 figures confusing and not going back for 6-9 months now x
can you explain what the iqr stands for i am 19.4 kpa and that is F4 on the chart above, but i have been told i have fibrosis and not cirrhosis after having an ultrasound scan after it.
Hi there I'll try but my explanation may not make sense ha! I contacted the foundation but nobody got back to me so spent long time googling it yesterday. The iqr is not relevant to us only so they know that enough readings where taken at time of fibroscan........so my overall result was 57 heck wish I didn't know now.😱
To my working out then you are stage 4 cirrhosis, but ask them what stage they say you are, but going off what other people say i think this is correct but not 100%, There is a lady who i think is on this site who is 30kpa, hopefully she will reply to you as well, i know she is on the facebook groups.
Hi 'dollydaydreams', I'm not sure if you mean me or not, but my fibroscan result was 30 (I have mentioned that before on this site and on a couple of the Facebook support group sites). The chart above indicates that F4 (cirrhosis) begins at approximately 17.5 and ranges through to 75.
What I have found interesting from 'spoul's' results, is that they dropped from 57.2 kpa to 38 kpa within 2 months, that seems to be a significantly large difference. Now of course this could have been due to the overall experience of the technicians (or was it the same technician?), I have read that that can be one of the disadvantages associated with fibroscans, i.e. false readings.
Anyway, I did a bit of a 'google' search and came across this site, which might be useful in understanding fibroscan results:
Hi again we've chatted recently haven't we. Thanks for your info. It's hard to remember if same technician did both as its 3 years ago and only now have I asked about scores. But I seem to remember first one high so second one was to check but second technician struggled to get readings so not sure which one reliable but either way both are higher than I expected. Guess I'm lucky my liver is currently well compromised but does explain my extreme fatigue x
So far I have only had one fibroscan done, so I haven't had conflicting results. My fibroscan was done so that my specialist could get some idea as to where I was in the PBC cycle - he was my new Hep. doctor and the ultrasound he had ordered indicated cirrhosis - to say I was shocked at the result is an understatement to say the least. My previous specialist had kept saying that because my LFTs remained the same and stable nothing was wrong, which I read as meaning I couldn't be feeling as ill as I was.
Though I now have varicies, Portal Hypertension, enlarged spleen, and of course extreme fatigue my Hep doctor has told me my liver is well compensated, as well, so we are both "lucky"
Yes it was Dianne :o), I must have advanced fibrosis then,as you know the technician / nurse who did mine did say cirrhosis, but consultant said fibrosis so looks like borderline for me :o) XX
Yes I know that a inexperienced technician can hit the ribs and get a wrong reading. My hep does mine and always has a hard time getting an accurate reading. It takes several attempts. I’m his only patient he has a problem with. He said it’s because I’m so thin.
Well....the liver isnt working correctly if you have cirrhosis....at some stage there will be severe water retention, varises and a host of other things including possible transplant. I am stage 4 with cirrhosis and whilst you can forget about being ill sometimes I cant just ignore it...i has varises that bleed and it was the most scary thing.. It just happened and I was in hospital for 6 days...now I have to have endoscopies every month to bind them. I feel if I had paid more attention to my diagnosis I would have realised what can happen. I enjoy my life but am very concious of the future which will not go away.....
Thanks for your reply. I've had Pbc 18 yrs, cirrhosis for 3-5 years. I'm realistic and know all the things you mentioned apply to a de compensated liver. I don't currently have varices or ascites or jaundice so feeling positive. But I do have a friend that required transplant and I was a nurse/midwife for 33 years so I've nursed bleeding varices and understand your anxiety.
Hi there I know I've had cirrhosis for 3-5 years but I've only just asked about the score..... the Kpa number of 57 is the score I was given...... cirrhosis is over 17.5 in pbc 😊
Hi Spoul, what is the source/link where you got that awesome graph from? And thank you DianneS for your link as well! My fibroscan back in July 2016 was 15 & I was told I had cirrhosis. Recent liver biopsy puts me at stage 2-3, so this all makes for sense now...I want to do another fibroscan though as it is has been 7 months since I did it...will keep on doing what I’m doing, seems to be helping!
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