You really need to go back to your GP and say you are concerned.
First by the lack of urgency and secondly because of the consultant not being a specialist in liver disease.
If he feels confident enough to say that you do have liver disease then he should address both issues for you.
Liver disease can present with a very rapid decline and 12 - 18 months is simply unacceptable. When my GP felt that I had a liver problem (Alcohol Related Liver Disease) I was put on the 'two week referral' pathway. You may be more familiar with this being used for a cancer diagnosis, however, where I live, in West Sussex, it can be used in liver disease. I saw a consultant within two weeks.
In the meantime, although its easy for me to say, don't worry too much. Hopefully you'll be seen quickly and sorted with either, the all clear, change your lifestyle or the proper treatment for whatever problem you are diagnosed with.
Explore the British Liver Trust website, so that when you do see your GP or consultant you go armed with knowledge and understanding of liver disease / health.
Much thanks LAJ123 , I really appreciate your reply 🌸
yes I feel I do need to go back to GP, I'll hopefully get to ring him tomorrow. I felt he should have at least given me an appointment to see me and also not tutt at me when I asked could I have cirrhosis.
I'd been googling awhile now, since I'd been told my liver enzymes were abnormal. I find it all difficult to understand tbh.
But seems a biopsy is needed before definite diagnosis and treatment should not be put off while awaiting the biopsy?
I'm also angry as on thyroid community I remember results I'd put up in 2014 being questioned by a member, I then pushed to speak to the endo who'd commissioned the bloods and she felt there was no issue 🤔
I'm glad for you there was a 2week referral pathway and I really hope you are keepin well. I'm in the north of Ireland so the same pathway may well not apply 🌸
Hi sorry to hear your have a tough time of it at the moment. Life is always a challenge when you have long term conditions to deal with.
Firstly , regarding the thyroid issue, I would say advice can be helpful. But remember people are just like you and me, they just may have been living with the condition a bit longer!
My daughter has auto immune hypothyroidism so I can say that is a wide band range in which the blood results come from and different labs use different bands to get the results. There is no uniform approach to how they do this. Some consultants will treat if your are borderline low, particularly if you have a neuro condition, gp's wont and don't understand this approach either.
It's a bit of a minefield and new research has come out recently which means that they will try and withdraw more people from it who only have mild dosage to save money!
Onto AIH, how were you diagnosed, if you don't mind me asking? I just wondered as we nearly lost my son before they realised what might be going on with him. They had nearly every specialist in the hospital trying to work out why his body was shutting down. Even then when they finally figured out what they thought it was, which I had already suspected by that time myself, they still needed to do a biopsy to confirm the diagnosis, which isn't fun for anyone, especially a 16 year old still reeling from suddenly becoming so ill so quickly. Well that's not totally true, he's been low level ill for a few years but no one could figure out why, and then went to stay with family for a break and became really ill all of a sudden.
Most people can be looked after by gastro docs quite successfully, and they work closely with other specialists as and when needed. Unfortunately with you living in Ireland , there are probably less consultants and longer list for a lot of specialisms. I know it is the same for neuro there too. Patients who are very unstable or become unwell and are hospitalized get priority and are then given consultants and outpatients appointments for follow ups generally, the time scale will vary depending as to how stable they are at discharge and it makes the list longer for everyone else or it may feel that way anyway. So it's good in one way, that your not that unwell but the bad news is it means longer wait unless you become one of the ones who suddenly deteriorate like my son did without warning because of the nature of the illness there is many viable signs till quite late on. If your aware you have liver disease and they can treat it in some way then it's good. Hopefully your gp will do regular blood tests and monitor you and they will chase up getting housed at the hospital quicker if you nmś22k
I'm probably speaking dribble now as it's really late and I'm a bit tired and yucky now.I think I need to go sleep now .
I hope you get things sorted out and you start to feel a bit better soon when they find meds to help you.I
How is your son now? I’ve finally been seen by liver unit in January past, 11month wait for an MRCP scan in my area so we paid €230 to have it done in Drogheda with alliance medical- half the price the same company charge in England.
But I’m still no further forward, no definite diagnosis ☹️ yes with my thyroid health it’s 24 yrs in the making so not an easy fix. Thank you.
I am with a gastroenterologist and have been for the last 6 years. I have no complaints and my consultant has been very good and I have faith in him.
I do feel you are having to wait far too long to see a consultant and if you are not happy about the person you have been referred to you ask to see someone else.
Hi Suin, that's definitely too long to wait with only a partial diagnosis of AIH. It can't be done on bloods alone and generally also requires a biopsy PLUS often a postive reaction to the steroid treatment.
If you do Facebook at all there is an AIH Support group on there with 1000+ members from around the UK, Ireland and the rest of the world and they might be able to give you names of doctors they and at which hospital. Sadly there are very, very few hepatologists about and many people do only see a gastroenterologist or a gastroenterologist with a liver 'interest'. However, most gastro's if they feel out of their depth should always seek advice from one of the main liver centres. QE Birmingham is the place for all the top advice as they have Professors who specialise in Auto-Immune Conditions. The support group mentioned has excellent links with these top boffins and indeed hold regular 'conferences' where they come and speak - there is one next month in London.
Gastro is normally where people are referred first, liver specialists are called in as needed hence the referral, but the wait is too long, see if you can transfer to another NHS trust which may do the tests more quickly.
Agree with other comments; 12-18 months is absurd; i have never heard anything like it in this sort of case; you should only be waiting a few weeks/ a month or so. Go back to GP/ or see another GP; request urgent referral to Hepatology.
I was diagnosed with AIH over 8 years ago and have only ever seen a gastro Consultant until recently, when I asked for a referral to the QE. I asked for a referral as my condition worsened and the gastro could not explain why. 6 months after a referral to the QE, they still can't tell me why, but they are still looking into it. Personally I have found my team to be mostly on the ball, but I was fortunate to have a great registrar helping me when I first got diagnosed in hospital and also a consultant from another department did explain a lot to me when I asked for more explanations. I wouldn't be alarmed at having a gastro as long as they seem familiar with AIH. Good luck
I too was given a waiting time of 'over 40 weeks' to see a gastro. (I'm in Wales). However I decided to pay to see a hepatologist at the QE in Birmingham privately. Best £200I've ever spent. After the initial appointment (2 weeks wait only), he agreed I needed to be seen at the Liver unit regularly and I'm now on the NHS receiving treatment for ascites, HE & varices banded. If I'd just gone with local gastro NHS appointment I would still be waiting to be seen.
Thank you all for your replies, I so appreciate the support shown by you all. This is all new to me, and scary enough.
I'm not on Facebook but would nearly be tempted to join just for the AIH support. My gp wasn't in today, I'll definitely get a chat with him to ask for quick appointment and or change of medic. I'm hoping not to have to go private, as I'd had to do that with my thyroid 😐
Same AIH Support Group also have a website and online forum though the Facebook page is definitely more active. The forum is at:- supportaih.websitetoolbox.com/
Hope you get some movement soon as you can not leave AIH unchecked. I note from your profile you already have a few auto-immune type conditions and they certainly can mount up - if you have one then you often get multiple (sadly).
Looks like they have disabled the forum - the Facebook group was certainly a lot more active than the forum. Webpage is still there:- autoimmunehepatitis.org.uk/
Facebook group is fabulous though, now approaching 2000 members - all with either AIH themselves or those like me with family members/loved ones with the condition. facebook.com/groups/AIHorgUK/
Ah thank you for your reply. I’ve tried different times and thought the site was being updated. I’d found it brilliant. I’m not on Facebook, I wonder could I avoid the rest of Facebook and just sign up to this 🤔 I’ve my first hepatology appointment today 👌🏻
I saw my GP today and he's agreed to refer me to a hepatologist in belfast. I'd already rang the hospital in belfast and was told that their wait is also 12-18 months also, and that it's their own consultants who decide how soon patients are seen.
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