Lost

Av been diagnosed with AIH last uear my specialist has left not had any bloods work done since 30th of November 2016 and still not had results from that yet dnt no wot levels of anything am very irritated anbout all this ma arms are a mess with itch am only onlt urso dnt evan no if this is helpingdoes anyone no who i can turn to or what questions i should be asking ...HELP

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  • Hello Sylvia1968.

    Seems that there is variables between when we have blood repeats. I presume you have PBC but have also since been diagnosed with the AIH.

    I was diagnosed December 2010 with PBC after starting to itch early 2010. I just take the urso and still itch but it tends to be mainly confined to later at night and throughout the night until around 6a.m.

    In the early days of starting the urso my bloods had been going up during 2010 (on one occasion they dropped naturally) and after I had taken the urso 2 months I had a repeat to see how things were. Results were pretty good, good drop in the liver function test (LFTs) and the GGT. I then had further repeats at 3 monthly intervals and after a couple years it was said I was OK to have at 6 months unless there was a jump up of the levels.

    If you are in the UK you can request your blood results and that should show the normal ranges and highlight the ones that aren't normal (as in low or higher).

    Personally I'd make an appointment to see my GP (I am in the UK) and go in to discuss your bloods, it'll be explained.

    I don't think that a couple months since you last had your bloods done is bad at all but it is worth asking when you are expected to have the next repeats. If you have your hospital letter ring the secretary of the consultant you had and find out or go via your GP.

  • Thanx a will av got appointment next week, a do live in uk (glasgow area) a feel as if no one is bothering and dnt no how advanced it is or anything a dnt no blood levels etc or wot all the lfts r etc my doctor doesn't seam to no much about it like most of them am between a rock and a hard place jst now x

  • Hello again Sylvia1968.

    Have you had an ultrasound at some point? I did several months before being informed I had PBC. It can give a good picture of your liver. My consultant informed me when I had my first appointment that he could see clear bile ducts on the scan results and everything looked pretty much normal then.

    I am certain if your PBC was quite advanced then your consultant would know . Itching is said to be of no measure as to how we are with PBC the same with fatigue some have.

    Even though a GP might not know much about PBC (mine didn't who I saw just after diagnosis) he/she can translate the blood results. A GP can also ring a consultant for advice about a patient if they need to do so too.

    You can request something if you feel you need for the itch. I never have as yet but the first line of defence seems to be Questran (or colestryamine as it is also known). Said to work for some, not for others.

    Have you requested a free dvd to be sent to you from Liver North (Newcastle based charity) as it is all about PBC. Check out their website, they also have their newsletters there for you to see. I'll pop the link on. British Liver Trust also do leaflets that you can see online with various liver disorders. I think there is also one on AIH. There is also PBC Foundation based in Scotland (I live in Lancashire) of which I assume you know about due to being on this site.

    I think it can take a bit of time to get to grips that yo have something that won't go away. I know how frustrating doctors can be, they tend to stress me out more than the PBC! All starting to look well with taking urso for PBC and feeling better in oneself over time you start to accept PBC and I know in my case my motto for some years now having PBC for over 6 years is to get on with life, live it as you never know what's round the corner. I decided I'd deal with things as and when as those things might just never happen.

    livernorth.org.uk/

    britishlivertrust.org.uk/li...

  • Yeah a believe in that to but ad get on better if a new something am waiting on ultrasound and biopsy but my specialist has left now so there looking 4 a new consultant so god only nos how long this will take i was diagnosed pbc around may then AIH in November very irritating to say the least av very tired n ma arms r a mess with scratching through night too 😪 xx

  • My GP requested I go for an ultrasound. I hadn't been diagnosed with PBC at the time, just kept having repeat bloods and others to rule other things out. Took a few weeks for the appt to come round and it was 4 months prior to me seeing a consultant for the first time late 2010. Maybe your GP could request the ultrasound but cannot comment re the biopsy as I never had one. I had the criteria to be diagnosed without but as you state you also have AIH I am not familiar only having PBC.

    You might be able to ask your GP if you could perhaps be referred to another hospital where there is a consultant in hepatology perhaps? Worth a try if that is what you want to do.

  • Hi Angela,

    You write "if your PBC was quite advanced then your consultant would know" - without an ultrasound (or some type of imaging) this is not necessarily the case.

    I spent over two years telling my GP and GI doctors that something had changed (I had developed 'new' symptoms for me) but because my LFTs had remained near normal, and unchanged, they kept telling me that everything was fine. I changed my GI and the new one sent me off for an ultrasound which revealed I had extensive cirrhosis, Portal Hypertension and an enlarged spleen.

  • Hello DianneS.

    I say this because I had an ultrasound a few months prior to seeing the consultant for the first time later 2010. I did see a programme on UK tv before I saw the consultant and it showed 2 men, one think late 30s, he was overweight and the scan live to air at the time was talked through and it showed he had a fatty liver. The other man early 50s was said to be in a cirrhosis stage and he was said to be alcoholic.

    The consultant looked at my scan when I saw him, said that he could see clear bile ducts and that the liver and surrounding organs looked pretty much normal.

    He then said that I had probably had the PBC 'a few years'.

    I might be wrong to assume but I think with an ultrasound being pretty much easy to have patients would have one more often than not prior to being diagnosed with something like PBC. I know I found an NHS Pathway online being in the UK and my GP did follow it to how it was. I obviously started my 'pathway' he used from seeing him with itching and then having abnormal LFTs.

  • Hi again Angela,

    I may have misunderstood your earlier answer, if so, I'm sorry - I read it as though you were saying that a doctor could tell how advanced we were based on our LFTs alone (Sylvia1968 said she was waiting to have her ultrasound), which, from personal experience, is not the case.

    I find it interesting how different countries have various 'pathways' in the diagnosis of PBC - you had an ultrasound prior to your first consultation with your specialist, where as I saw my specialist (based on LFTs) and then had a biopsy - it wasn't until I changed my specialist, some 23 years after diagnosis, that I finally had an ultrasound.

    Take care

    Di

  • Hello again Di, it's OK regarding your posting. I think not only do countries vary with how we get to a diagnosis of PBC and also how we are then seen as patients after can also vary in our own countries.

    I think I followed a pretty normal route to being diagnosed with PBC but at the same time, I think it took far too long but in the UK the wheels of the NHS turn slow if you are not an emergency case.

    I used to say to myself during 2010 if the blood work was that bad surely I'd have been seen at hospital quicker (my first hospital appointment took 13 weeks to come around).

    Also I did think that I just had something and nothing due to my hectic lifestyle - long working hours, being newly married for two reasons - and that I wold stop itching and my 'temporary glitch' would resolve but obviously it never did and I was told i had PBC.

    As you are probably aware (but there are new joiners to the site) in the UK these days biopsies aren't performed if a diagnosis can be reached without the need so I've never had one. I had the relevant blood work along with symptons to give this.

  • Ha, the 'wheels turn slowly' here in Australia too - took 2.5 years to get my diagnosis.

    Fatigue and continued raised LFTs over a 12 month period resulted in me having an ultrasound which revealed a previously unknown gall stone (I never had an attack so both myself and my GP were totally surprised). So, out came the Gall Bladder but still the raised LFTs remained, in fact they continued to rise - so 18 months after the surgery I was sent off to a GI, who ordered an AMA blood test (it was the only blood test my GP hadn't ordered), and, surprise, surprise, PBC.

    What I found really weird was, my cousin in the US went through a similar pathway (as mine) when she was diagnosed with PBC - the same year as I was.

    Take care, Angela

    Di

  • Thank you av got doctors this week again so fingers crossed a get some answers x

  • And a do hav pbc too xx

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