Feeling a little anxious

[Sophia1968]

Good morning to you all, I feel a little anxious today and hope you don’t mind me posting again, as some of you may remember I was diagnosed with severe fatty liver on an ultrasound, one dr did a calculation online line ruling out advanced cirrhosis, the second dr did a different calculation showing f3 / f4 …… I was not sent for a firoscan and heard no more about it….my bloods at last check a good 4 months ago were

Ast 23, Alt 15, Albumin 40, Billirubin 8 , platelets 265, however I do remember questioning for a good year or so about my Red blood cells which seemed to get higher every time, the last read was 5.32 (normal is 380/480) all the dr said was we will keep an eye on it, I’m just wondering if this can be relevant in any way to the liver problem, also my alkaline phosphates seem to drop every time and are now 67, what I don’t understand is whether that particular one should be higher rather than lower, as it is to do with bone health, or have I got the wrong info there, I also have a permanent flushed face and I keep getting weird veins appear on my legs like little tiny purple swirls, I have a few red dots on my body mainly neck and shoulder but was told these are just burst blood vessels , cherry amigoes I think they said, plus I get little scratches appear which I don’t recall doing myself , I am sorry to ask if any of these things sound related and I know I should ask my dr, but honestly I never really get to ask all the worries because the time just goes and I always come away knowing no more than when I went in….I am only asking today cos my anxiety is there a little today and I just want to nip it in the bud, everyone on here is so knowledgeable and I value your opinions, thank you so much for taking the time to read this xx

[MINTVCX]

"the second dr did a different calculation showing f3 / f4 ……" If I were I would ask which test it was. And positive predictive value (PPV) for this (if possible).

[Sophia1968 in reply to MINTVCX]

thank you so much for your reply, the first dr did the fibro 4 index score this uses test results only ast, alt, albumin and platelets this came out as excluding advanced fibrosis…. The second dr did the fatty liver disease calculation which includes weight, so I assumed the weight pushed it up as I am very overweight, I did the same test and put in a just above normal bmi and it still said f3 f4 I’m really not sure if that one is accurate , the dr was going to speak to someone but I never heard any more , i know I should just push it and ask but it’s so hard getting an appt and I have had so many issues over the last two years that I get the feeling they are fed up with me , I would be if I was them tbh, so this makes me feel like I should not keep bothering them , I had a recent ct scan for bladder and kidneys I just wondered if that would have shown the liver as well, it did to the extent that it confirmed severe fatty liver but if it was a further stage would it not show on there? Is only a fibro scan the type to show things more accurately , thank you again for your help xx

[MINTVCX in reply to Sophia1968]

Well fibro 4 is pretty good to exclude F3-F4 fibrosis (fatty liver). Anyway any calculation based on standard LFT is not enough to diagnose severe fibrosis. The best option is to see good hepatologist with all your tests sofar.

[Sophia1968 in reply to MINTVCX]

thank you, do I have to ask my dr to refer me?

[MINTVCX in reply to Sophia1968]

I am from Poland I have no idea how does it work in UK or other non-UE country.

[KengaRoo in reply to Sophia1968]

Sophia you can book a hepatologist direct now if you have insurance or want to pay. Initial consultation around £300 then drops to £200 or less. Google: Top doctors hepatologist UK

[Sophia1968 in reply to KengaRoo]

thank you my lovely xx

[AyrshireK]

Have you had the fibroscan? Who was this being reported back to? Fibroscan should provide a kPa figure to score fibrosity/how dense your liver is and a CAP score to identify how much fatty change is in the liver.

With various tests giving conflicting results and some pointing to possible more advanced fibrosis your GP should now be referring you to the hospital (either gastroenterology or hepatology). Though there could be a fairly lengthy wait.

You should be doing all you possibly can to tackle the NAFLD though I know that's difficult when you have so many issues going on at once. The BLT has wonderful guidance on tackling NAFLD. britishlivertrust.org.uk/in...

britishlivertrust.org.uk/do...

Katie

[Sophia1968 in reply to AyrshireK]

also thank you so much for the links Katie xx

[Sophia1968]

thank you Katie, no I did not have a fibro scan in the end, the dr was going to get advice regarding the high score on the fatty liver. Calculator, both doctors do not seem bothered because my liver results are ok, saying that should alkaline phosphates be high or low, cos mine are dropping, I know it’s good to have low alt and ast but I don’t kvow about phosphates, my Ferraris is 110 and again I’m not sure if that is good or not, I will speak to the doctor this week if possible, I feel like I have been left up in the air, do you kvow if red blood cells are affected with liver disease, mine have been creeping up for the past year they are 532 now and the top end of normal is 480 , sorry to ask so many questions but I kvow you are so knowledgeable with all of this xx

[pushthrough in reply to Sophia1968]

I would request the fibroscan and insist on it better safe than sorry

[Sophia1968 in reply to pushthrough]

yes I will ask the dr when I see her Thursday, thank you xx

[Readlots]

Hi, I know you don’t have a PBC diagnosis, but the PBC Foundation has a really good section called ‘know your numbers’ which explains the liver function tests. It’s quite helpful for anyone with liver issues even if it’s not PBC.

I also find the links on the NHS Ap helpful: labtestsonline.org.uk/tests...

But as Katie says, maybe time to get a referral to a liver consultant so that you can get some answers, advice on how to look after yourself and some reassurance.

[Sophia1968 in reply to Readlots]

Thank you for replying, that link explaining alp really helped, I honestly thought mine being low was a problem but it seems to only be a problem if raised so this put my mind at rest, I will also look on the other site you mentioned, so grateful thank you xx

[Ruggerhead]

Sophia, you really need a referral for a fibroscan, all these test even like ratios can be up and down. Fatty liver disease in itself is very common, so Im not sure how they are saying severe fatty liver without a scan, you see on fibroscan you have the stiffness readings, and the fat content, so you can have a high fat content but no scarring as such. When the fat builds up to th extent that it is actually causing damage it becomes stage 2, NASH. At this stage your bloods seem pretty good to be honest, with markers in the normal range. Usually for most Drs this is the first step, then the scan. In the old days a liver biopsy would have been ordered to asess possible end stage liver disease but nowadays the fibroscan is fairly accurate and sensitive. Calcualtions online or otherwise are usually based mostly on bloods and can be all over the place especially if they are normal. If you have a high BMI then it is entirely possible in fact probable that you have a high fat score, But the possible situation where you have little or no stiffness so a wake up call to reverse things with weight loss, lifestyle etc. BUT, ask your GP for a fibroscan or maybe you can go privately, they cost about 200 pound and in some places you don't even need a referral, baring the needle they as the best way. An abdominal CT is a good start and great for seeing things like liver masses, or swollen liver, but not as good as fibroscan. I had plenty of ultrasounds, CTs that came up clean, ie looked helathy, then had a fibroscan and like you severely fatty liver,

[Sophia1968 in reply to Ruggerhead]

aww thank you hun, your reply makes me feel much better to know that although I have sever fatty liver, it could still be possible that it still functions normally and may not be to stiff, I originally had an ultra sound scan for bladder and kidneys and the liver was picked up as being severe fatty liver but I was never told…..then a year later I had to have ct scan for bladder and kidneys so again it was picked up, the doctors seem very evasive when I ask and just say it is severe and really bad and to lose weight and they will scan me again in a year…. But I agree I need the fibroscan to know what is actually going on, so I will ask her …… I hate sounding like I have health anxiety but when you have so many issues it’s hard not to be paranoid, polycystic ovaries, even a hysterectomy didn’t cure it as it’s an imbalance in the brain also, high blood pressure, diebetes, not to mention years of sleep paralysis, womb cancer (4 years ago) a rare allergy WDEIA and now palpatations, I really don’t feel like I can take much more, I am already waiting to see cardiologist in June on a referral, so they prob think I have had a lot of help already, maybe paying to have is done is a good idea as you suggest, I will look into that as well, thanks again xx

[Ruggerhead in reply to Sophia1968]

Yes, unfortunately some Drs just fob off Fatty Liver and say come back in a year, but on the positive side your main liver markers, especially AST and ALT are good, ALT is more specific to any liver damage, along with GGT, then you have the functions ie the Bilburin etc. So in fact at the moment your liver is functioning ok, thats not to say that there might be some stiffness, but most times your bloods would indicate some issues. The secret is to get the fibroscan and set about losing weight, exercising, no booze etc as fatty liver, even severe can be reversed, the only stage it cant be made significantly better if it has reached cirossis level, and that should be picked up easily by CT/MRI that you have had. If it takes a while to get a referral just look up a private health company that does the fibroscan and book it, I think cost should be about 200 pound. You dont always need a referral and you will get 2 results on the day, tour fat level and your stiffness level. Armed with those results you can take the next step, seriously just do it, its non invasive and takes aboiut 15 mins. Dont delay the sooner you know whats going on the sonner you can put it right.

[RedPoppy2]

Hi, Your issue with RBC seems to be very similar to my own. Mine has been rising steadily over the last 5 years (6 tests done in that period and latest reading 5.3). All of the RBC results in that period were listed as "Abnormal", but the GP felt no action needed to be taken and I never pushed to find out why. I'm hoping the fact that it's been like that for 5 years means there's nothing serious going on and this might be "normal for me". My other liver results are also very similar to yours - apart from I have raised Alkaline Phosphatase. I have a diagnosis of Fatty Liver and am currently undergoing investigations to see if anything else is going on, so I'll let you know if it turns out to be RBC related. As others have said, I would push for a referral to Hepatology and I would ask the GP to explain why your RBC is raised (kind of wish I'd done that, as it has niggled over the years, but don't really like to "push"). Hope all goes well for you and you get the answers you need.

[Sophia1968 in reply to RedPoppy2]

thank you my lovely, I hope all turns out ok for you, yes please do let me know how you get on and whether the high rbc are related, I’m not sure the will be cos if anything doesn’t the liver make you anaemic if there is a problem, unless ferritin is high, mine is 110 but I’m not sure if that is a good number or not, I think 300 is too normal but again is it a case of the lower the better, my friend and mum both sit at 17 xx

[Sophia1968]

thank you iro1 for your reply, the 5.32 is my red blood cell count, the top end for normal is 4.80….. my haemocrit is normal as far as I can remember, no I have not seen a liver consultant only my gp, I am so pleased that your liver is stabilised and I am glad you have a good quality of life, your positive post has really helped me thank you, I will absolutely talk to my doctor again regarding a referral, I need to know for sure what is going on , really appreciate you taking time to reply xx

[KengaRoo]

Low ALP is good. Lowest can be 30. Amy lower brob. Zinc deficiency but its rare.

[Sophia1968 in reply to KengaRoo]

thank you so much hun, that really makes me feel so much better, I was really not sure about that particular type, thank you for confirming , also is 110 for ferritin a good figure do you kvow, I hope you are ok xx

[KengaRoo in reply to Sophia1968]

No problem, Sophia 110 ferritin is good. If you you are in the UK NHS you can call your surgery results line and ask them to email you your blood test results. You can see your score and lowest-highest range. Private tests should provide this paper results even without request. xx

[Sophia1968 in reply to KengaRoo]

thank you so much hun, you have been so helpful, I have got an appt for 9 march and will ask doc to do another blood test and also a fibro scan. If she won’t do the scan because my results look ok then I will look into doing it myself just to put my mind at rest either way and see exactly what I am up against , thanks again, I usually collect a print out of my results. I never knew they could be emailed. I will look into that as well xx

[Ruggerhead in reply to Sophia1968]

Yes Sophia I have found you must be proactive in this, bloods alone are not enough as they can be quite normal in a lot of situations, there are more specific and costly bloods you can get but I suggest a scan of some sorts, MRI or Fibro scan would be best as no radiation worries and standard ultrasound can miss a lot. If the Dr refuses just get one privately, better to have peace of mind, will be the best money you have spent, that will show extent of simple fatty liver or if it has caused some fibrosity, Good luck..

[Sophia1968 in reply to Ruggerhead]

thank you so much for your advice, I am seeing the Dr on Thursday and will ask all kinds of questions and push for a fibro scan, I’m worried because my lga antibodies are also high and yet no one seems to know why, I’m worried it is liver related as well…. I definitely need answers, and will know what to ask now xx

[Hidden]

I got this on the MRI I had done last week.. First time I ever saw a % for fat in my liver.

Steatosis: Present, fat fraction 12.1%

[Sophia1968 in reply to Hidden]

oh bless Nelson, im sure you will turn it around, at least now you have something to aim and work with, I would be happy with 12 percent fat, im scared what mine will be at severe fatty liver, im worried it might be 75/99 percent, the way everyone seems to look and talk regarding my scan 😥 xx