Hello, I have just heard from my GP's receptionist in response to my having twice requested results from my 28 June test.
The receptionist told me that my levels are "high" -- 11.6 , as opposed to a 'normal' level of 7, which indicates the need for adjustment in lifestyle.
Given that I haven't had a drink since December 2022, and am careful over diet, medication (rifaximin) and vitamin regimes, I asked if the letter contained further information and was told to contact the Gastro unit at the hospital for a copy of the letter the GP practice has received.
When I further asked for an indication of the contents, I was told the IQR level reading was 1.0, and CAP reading was 244.
Apologies if this is a repetition of other posts, but these acronyms (?) are new to me. Until I can call the Gastro unit tomorrow morning, If anyone could offer a little clarification, I'd be really grateful -- not looking forward to a sleepless night. Sigh and thanks for reading!
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Goatonthemountain
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The score of 11.6 will be your kPa figure reflecting how dense the liver tissue is. Depending on the underlying cause of your liver ill health this will indicate what degree of fibrosity this reflects F0 (normal liver) to F4 (cirrhosis).
If alcohol is the only causal factor then a score of 11.6 is only around F2 so totally reversible. The cut off scores vary between conditions.
The IQR (inter quartile range) is just part of how medics assess accuracy of the scan - it's irrelevent to your results.
The CAP score is the amount of fatty change in your liver which goes up to 400. Between 238 to 260 is classed as Steatosis grade1 where less than ⅓ (11% to 33%) is showing as fatty.
What diagnosis do you already have? I note that you are on Rifaximin - is this for liver related issues? Since it's one of the treatments for Hepatic Encephalopathy.
Hope that helps a bit, hopefully it'll help explain some of the 'med speak' that comes up in your appointment.
Thank you so much for your help, which has clarified a lot of my questions and given some much needed reassurance. I wasn't formally diagnosed with Hepatic Encephalopathy, even though I was indescribably confused. I was told however that I was severely B1 and D3 deficient, warned not to drink and prescribed Rifaximin and lactulose -- for liver problems -- and have been taking these since January. Saw consultant mid-March who said not to worry about diet then confirmed by letter that I definitely didn't have HE. Had endoscopy 8 weeks ago and told there were no issues, so the verbally negative message today unnerved me -- particularly as I was told my GP wouldn't discuss the results on the grounds that as the fibroscan had been requested by the hospital, I would need to contact the Gastro unit for clarification. As my next liver appointment isn't until late September, I have feeling that I will be hounding the hospital for an earlier appointment.Thank you again for your clear explanation of the fibroscan scores -- as I am still waiting for Ultrasound results, I. fear that. I may need to ask for help with interpretation again!
It sounds to me like your liver isn't tòo bad and some good healthy eating, exercise and continued abstinence are key to reversing the damage done. I wouldn't have thought you need to expedite your appointment based on the fibroscan. Just keep doing what you are doing and hopefully you'll have even better liver results come September.
Thank you Katie! I feel much easier after reading your reply! Brussel sprouts, cauliflower and more long, energetic walks (well as energetic as I as I can manage!) with the dog it is -- along with only water, fresh lemon and ginger to drink!Thank you -- you input is most gratefully received. 🥕🫐🥦 x
Find the name email address and / or telephone number of your consultant's secretary and ask them if you can have clarification. I was diagnosed in Feb 2023 with cirrhosis -Luckily I have seen my hepatologist twice and have had clarifications / questions answered twice by his very helpful secretary. I always receive copies of what goes to the GP and this should be standard NHS practice. If your gastro deot has liver nurses there is usually a number to call them and they can help with many queries too. Good luck.
Thank you -- I intend to call the hospital tomorrow to request a copy of the letter sent to my GP as I try to keep a written log of all consultations, tests etc. AyrshireK's explanation of the medispeak and guidelines have afforded me a more restful night than I'd anticipated earlier.
Thanks again for your input and best wishes for you on your path x
I did Google and lots of the replies returned percentages, which threw me (not very number articulate!)
I think what threw me most was this unknown -- not medical individual telling me that the letter referred to "the need for a change in lifestyle" without the offer of a GP consolation -- or expansion of contnet in specific understandable terms,
Am onto the hospital this morning and calmly sipping lemon juice to calm!
Thank you -- I'll repost when I get some specifics!
why are you being prescribed Rifaxmin? This antibiotic is often used to treat Small Intestinal Bacterial Overgrowth (SIBO). Have you had a SIBO (breath) test to confirm this? Is it symptoms of diarrhoea that have led you to this diagnosis and prescription? What other gastro tests have you had?
The Rifaxamin I was prescribed in hospital as I was told that I'd thought that I was on a boat on the wetlands of Louisiana.
The Lactulose is another story, very related to your question -- about extreme diarrhoea -- and I do mean extreme; I was house bound because of it for a while. By the time I was hospitalised and on Rifaximin, the medications team gave my Lactulose. When I asked what it was for, I was told that it would "help me go to the toilet".
I refused that medication for the two months I was on the ward on the grounds that i didn't need any help in that area! The lack of bowel control was intermittent while I was in the hospital, but did ask to be given a bed near a bathroom as I got little warning about bowle movemnets. It was so bad at one point I called a ward manager and showed her my soiled clothes and explained that this problem hadn't been raised at all.
When i was discharged, my GP went over my medication, Rifaximin, Thiamine and the dreaded, but not taken, Lactulose. She advise d me to start taking it, small doses initially and then build up to the prescribed daily amount as it would ensure that any built-up toxins from alcohol would be cleared. -- which I did reluctantly and am still taking.
Bowels are more controllable currently, but I still get, maybe, two minutes warning at most.
Was never given any "grastro" tests or asked about the constant BMs (up to 13 a day) despite my asking.
On 4 July I had an ultrasound and asked the technician and the 'senior person' who also examined me how my liver looked and was told that my liver "looked OK"......... Hence my concern over the opaque contents of the telephone call. Am off to re-dial gastro unit now and will also ask if they did any breath tests -- I have absolutely no recollection - but then again, I was avoiding beasties in the murky Louisiana waters!
Thank you for noticing this when no medic seems to have! Be careful, or I might ask you to come to my next appointment!
It sounds as though you should request your gastroenterologist to give you a SehCAT scan to confirm whether you have Bile Acid Malabsorption (BAM). There's a recent discussion about BAM in this thread:
>Bowels are more controllable currently, but I still get, maybe, two minutes warning at most
This is very much a symptom of BAM.
Typically people with BAM have hepatic steatosis as you do and they have low levels of B12 - the discussion about BAM is in the Pernicious Anaemia Society's forum which is the charity for B12 in the UK. BAM patients who have the worst symptoms often have problems with their gallbladder (typically after removal).
Perhaps ask your GP for a Vit B12 test to see what your levels are and ask the gastro for the SehCAT scan.
Wow -- despite having googled my symptoms, this is the first I've heard of BAM -- I've been taking Vit B12 as a multi B supplements for 4 weeks -- as I've been veggie since 1973, and after reading about B vits, thought it was time to boost levels myself.
Re asking my GP - I've just been in person to the surgery as the hospital number they gave me just rings out -- and they won't give me a copy of the e-letter addressed to the surgery, but they have, helpfully told me: "probably best to drive there to talk to someone, although they may be mega busy" Direct quote. 🙄
Going to the thread you recommended now -- then off to the Gastro unit to chain myself to a fence!
If you live in or near London, Imperial College NHS Trust is the place to go; they do a lot of research into BAM. Alternatively the Warwick and Coventry NHS Trust also do research into the condition and they have set up the BAD (Bile Acid Diarrhoea) charity: bad-uk.org/
I hope you get your SehCAT scan soon - it is a very quick and painless procedure.
If you have B12 deficiency as well, ask some questions on the Pernicious Anaemia Society. The main symptom of PA is extreme fatigue but patients with PA typically have low stomach acid which also leads to diarrhoea.
Will try Warwick and Coventry as they are closer to home. Just spoken (finally) to Gastro secretary who said "no urgency" and said I should have blood test a week before end of September consultant appointment -- no need for action before.
In the meantime, will contact the NHS Trust you recommended -- secretary said the Ultrasound showed nothing that required immediate attention and would be discussed with me in September. Sigh
when i have a fibroscan i ask the operator for the results and i know there and then.myreading came down afrom 13.4 to 11.6 after a mildly successful year of trying not to drink.this year im determined to go a whole year without alcohol and reduce readings to a normal one.
Best of luck - I'm not drinking anything at all apart from coffee, water and fresh lemon and ginger - even when I meet friends who are most understanding. I'm finding salt the biggest issue - and am still not sure whether that impacts on score. Just spoken to gastro secretary who said "nothing urgent, keep doing what you're doing and we'll se you in September!
Katie has said it best. You did the right thing reaching out to this community. I just wanted to say I can't help laughing at your name. I have this picture of a goat on a narrow ledge looking out for any diving hawks.😀
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Fibroscan reading hi guys
Fibroscan results
Another initially frightening update...
Fibroscan 
FibroScan
