This is a question for UK members. Do you get treated by a gastro dr or liver specialist? I’m currently under a gastro consultant at my local hospital in West Wales, but I’m not receiving follow up appointments and last time I spoke to the medical secretary she said the dr was ‘away’ and not sure when he was coming back?? My numbers have recently spiked after being normal and now I wonder if I should try and get on a liver specialist book? I’m not quite sure 1) whether this is necessary and 2) how I go about this? Grateful for others opinions and experiences.
I’m just finding the whole waiting around for appointments and not getting them so frustrating. I’ve had to request my last 2 blood tests myself. My GP doesn’t seem to send my test results to the hospital...it all seems so disjointed, and I wonder if I would receive better monitoring through a specialist. From what I can see on the internet, the nearest specialist to me in West Wales is Birmingham (4hours away).
My main concern is that I’m not responding to URSO...the only times my numbers come down is when I take my herbal tincture, but my GP refuses to acknowledge that it’s the herbal working not the URSO.
Best wishes and Happy New Year to everyone.
Hilary xx
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Hils67
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I live in South Wales and I go to Birmingham and was referred by my gastro doc as I was not responding to uso. I am now on a clinical trial and go up every 3 months for a us scan and bloods.
I would suggest going back to gp and demand to see another gastro maybe in a different hospital, you are well within your rights to do that. I see a gastro from not from my local hospital but one further away as the waiting list was longer locally. Mind you I did have to pay private for first consult.
I'm in a town called Port talbot near Swansea. Yes under both got appointment for both in January. Yes I think made right move going private by the time my gastro appoint came for local hospital had already been dx after biopsy.
Just checked my records and my last ultrasound scan was 2016! I do get fibroscan each year, which thankfully is normal, but I believe a us scan shows more about what’s happening to the bile ducts...as in any blockages etc.
I'm down in the South West in Plymouth and I get seen by a liver specialist. They are very good, I've had loads of scans and get regular appointments for follow up and bloods every 3 to 4 months. I've been on URSO for 18 months now and my liver readings have come down significantly so its working for me...even the itching has reduced dramatically. Just need to cope with the fatigue, which comes in waves...some days really good, others are a bit of a struggle. If your not happy then insist on seeing a liver specialist, all they have to do is make the referral. Hope things get better for you
Hi Hayley, I presume the question is for Roxy, but I’m stage 1 PBC. I wasn’t that bothered about not having too much GP support as my numbers were stabilising...however, they’re going squiffy again and now I’m realising the system isn’t keeping an eye on me. I’d rather be monitored properly should they go really nuts. I agree with some others here that if we’ve got PBC awe should be under a liver specialist. Although this disease is slow progressing we need their support for when it does start going haywire.
Yes, question was for Roxy. I was just curious why the care differs so much. & I thought that it might be determined by the magnitude of the condition.
Thank you for answering as well. You are absolutely right to take a proactive approach & advocate for the best care you deserve.
I am in the US so it is a bit different here. I am under the care of a hepatologist. And from reading the posts on this site, seems like everyone’s experience with doctors is very different regardless of whether we are in the same country.
Hope you get a good medical team to take care of you.
From what I understand even our strapped NHS is better than the US system where you have to pay for everything unless your insurance covers it. I should be more grateful!!
US is the only wealthy, industrialized nation in the world that does not have universal health care for its citizens. This says a lot about the values of our government leaders and the gap between rich vs poor.
Even when people have insurance, there are co pays for everything so if you have a chronic condition, still have to pay more vs a healthy person.
Other than the above, the good thing about our system, it is market driven. This means you can make your own choices regarding who to see etc.
I am grateful to my doctors for their care & compassion.
Take Care.
Haley
I see a gastro, at the hospital I go to the liver and the gut are under the same umbrella. However as part of a multidisiplinary team your case is discussed if or when any changes occour. So I feel looked after for now and I know they have other pbc patients.
Yes it’s odd that the GP,s and the hospitals have become so disjointed. I can’t get blood results at my doctors if they were ordered by the consultant, they don’t or won’t access the system to get them. As far as the GP goes he just as well not be there these days, if you want an appointment you have to wait a month, yet the surgery have over 400, “did not attend appointments” in a month and do nothing to improve it, it’s crazy there allowed to get away with it. Sorry that’s my rant and pet hate.
You are entitled to a second opinion, I would exercise that right now , if your not responding to the URSO it will be worth it even with extra travel to know and feel your being treated properly. I would contact the PBC Foundation advisors, they help guide you through it.
HiLiver specialist all the way! I’m at Addenbrooks in Cambridge and the treatment has been exceptional. Not only do I have all the scans and regular blood tests but I also have a specialist nurse who makes a telephone appointment to have a chat. This saves both time and money for the NHS and enables the nurse to flag any potential issues to the Consultant.
I hope you get it sorted. Suggest your GP comes to Cambridge to see how it should be done! X
Hi, I would recommend contacting the PBC Foundation. When I was first diagnosed I had concerns about my treatment from my local hospital and after speaking with the Foundation (who didn’t tell me what to do but gave me a good overview of the options) I asked my GP to refer me to a different hospital and I was seen very quickly after this. It’s a longer journey but my treatment has been superb.
...one more thing. As my hospital and GP surgery are in different NHS regions I book my blood tests through the surgery, collect paper copies of my results and take them to my appointment. It’s less high tech but it works. If the consultant needs me to have other blood tests I have them done at the hospital and he writes to my GP with any follow up, copying me in.
I know what you mean about trying to get GP appointments. It’s the same at my local surgery. You either ring up at 8.30am and state your appointment is an emergency or wait a month. No wonder so many appointments are missed!
I actually keep a spreadsheet with all my results so I can see the trend. The last set of results showed a spike and my GP had marked them as satisfactory. When I challenged him he said he marked it as satisfactory as he knew I was coming in to see him. Surely they should have been marked increasing? Then he told me to get in touch with the consultant at the hospital. So I rang, but the secretary wanted my GP to contact the consultant. I just feel like I’m going round in circles. Oh, and you don’t get to see the same GP so there’s a lack of continuity.
Now the holidays are over I’ll set about trying to get an appointment again.
Best wishes
Hilary
Hi Hils67
Im the west coast of Scotland. Im under gastro consultant, however he works closely with the liver specialists at Edinburgh. He has shared concerns before and asked advice on medication when required. I have never had any complaints with my treatment. I get ultrasound every 6 months and consultant was every 8/12 weeks over the passed year and haĺf due to some issues but back to 6 monthly check ups. Im also fortunate to have a great gp who contacts the consultant as soon as there is an issue with my health, asks for advice on medication that is not for my liver and always hears back within a day.
It saddens me that there are so many not getting the same quality of care and i hope this improves. I didnt appreciate the nhs until i become ill and now i have a great respect for it.
Hi Ang, sounds like you’re getting really good care. I didn’t realise how rubbish mine was until I asked the question.
My previous blood test before the last two was normal and I was told the consultant wouldn’t need to see me for another two years! Even when my last result showed a big spike my GP didn’t send those results to the hospital. If I wasn’t keeping tabs myself then I wouldn’t get anywhere!
I’m surprised at how consistencies in level of care varies across the UK.
Hi, I live in south of England and see a liver consultant. I was referred to Hepatology by my GP after having a well woman check and my liver panel results came back out of range. The liver consultant diagnosed Pbc and I now see him regularly. He is great and I feel I am in good hands. 👌
Hi, it should be same guidelines for care in all areas. I do know i am very fortunate to have the great team that i do looking out for me.
My blood results have not been normal in the past 5 years ,they were very high. They have came down recently a bit which is great.
I get all my blood results on the myhealth portal from Birmingham which my gp can access as well. Birmingham also send a letter to gp after every visit. I have been seeing professor Gideon hirschfield for the last 5 years up in Birmingham he top doc on pbc and does consult with Robert from the pbc foundation. Look him up he as top man when talking research and as written a lot of information on pbc
Hi Hilary ... I go to Birmingham every 6 months and initially was seen by Prof Nueberger and then passed onto Dr Hirschfield. I would strongly advise that u get yr GP to refer you to the Liver Clinic at Queen Elizabeth hospital as their care and coverage is wide, collective and then u are appropriately placed should you require more than the usual check ups. They can liaise with your GP and your local hospital should u require any procedures carrying out which your local are able to deal with. I realise the trip is long and tiring as I live in Abergele North Wales but ultimately yr health is worth putting yourself out for. I am lucky in respect that on many occasions I have been chauffeured to and from but have also done the trip in one day on my Jack on the train so know that it is possible. Also should point out that they book for me to have an ultrasound just b4 I go in to see the consultant which is a godsend. However, would aim to get your blood done and take results with you as they tend to take blood after consultation which has always seemed to be arse about face to me. Hope this helps.
Thanks Ali for your suggestion. I’ve booked in with my GP...earliest date I can get is 28th Jan. Just spoken to my consultant’s secretary who told me the consultant (gastro) wrote to my GP on 27th November suggesting increasing my URSO from 12mg/kg to 15 mg/kg. So, if I hadn’t phoned I would be none the wiser!! It’s a joke. I also tried to book another blood test at my local surgery, but they won’t do a blood test unless the GP requests one. So I now have to wait until 28th Jan to see the GP before I can book a blood test which will take another couple of weeks. All these weeks add up...it’s so frustrating.
I will definitely be asking for a referral as I want to be monitored properly, not this half arsed approach.
Sorry, rant over. Just so annoyed with how long it’s taking to try and get flippin appointments. Yes, you’re right about the long trip being worth it.
Hi Hilary, does your gp surgery do telephone appointments? I always see the same Dr for anything related to Pbc, but I mainly do this over the phone. At my practice if you request a phone call it often can be fitted in that day or the next. I've only once had to wait and that was because my Dr was on holiday and I prefer to speak to her rather than another gp. They have a system where if you have a long term condition you have a named gp, so they keep an eye on results or letters etc.
Also when you talk of a spike in your blood tests I presume you mean alp? A one off spike means nothing, they will look at trends over time. As long as the alp stays under 200 you are considered to have responded to urso and as such will just need annual review by gastro/ hep Dr. If you are well generally and previous scans have shown no abnormalities then that's great news.
It is important to get the dose of urso correct as this could make a difference. I have to say I personally would be very wary of a herbal tincture, the British liver trust doesn't recommend any herbal/ alternative medicines. In some cases these things are putting more strain on the liver, and can even be harmful. Its important to only take what you have been prescribed by your doctor, they should be informed of everything you take including OTC meds and alternative treatments. Please be careful, natural things can be poison to the body!!
I agree the Pbc foundation will offer you some great support and help you advocate for yourself to get the treatment you need at this stage.
Basically my numbers had been steadily coming down and after 18months were down to normal level. This was when I was taking the herbal tincture made specifically for me, not an otc product, but by a trusted qualified herbalist who is very knowledgable about my PBC. My previous GP and consultant were aware and both said it wouldn’t do any harm. Once my numbers came into normal range I thought I was ok. So I stopped the herbal stuff. By which time I was on annual review. Next Annual blood test (12 months off the herbal) revealed all my results were back to what they were when diagnosed, alp higher than when I was diagnosed and over 200. So had another test a couple of months later and it was still high. I was also getting more itching and hot flushes, so went to dr. It seems our surgery doesn’t have the same policy as I no longer see the same GP and the new one I see is very young and keeps having to look things up on his iPhone...which doesn’t fill me with confidence. He’s tested me for other things for the flushes but said it’s most likely menopause, but could be PBC. I’m not aware of our surgery doing telephone appointments by request. My old GP used to do follow up calls but she’s not there anymore. It’s pot luck who you see.
Anyway, what I found out today was that my consultant wrote to my GP back in November following a phone call from me asking for an appointment as i’d not received my annual review appointment. The consultant’s secretary told me he’d recommended my GP increase my Urso to 15mg/kg and also suggested another medication...no idea what that is. I asked my surgery for another blood test to see if things are coming down, but they refused saying they can’t do a blood test until the GP requests one. So I have to wait again. I’m just so angry at the lack of communication and urgency.
I can feel in myself that the PBC is worse than it was a year ago. I know I’m not in the danger zone, but if damage is being done to my bile ducts I want to get on top of it. I’m back on my herbal stuff as that seems to be the only thing which makes any improvement. It helps with the itching and I generally feel better on it.
I know it’s not conventional, but without the herbal tincture my LFTs were spiralling. I have thought about coming off them and letting the GP work out whether the Urso is working, but I’m not willing to take that risk.
I’m just feeling like I’m having to battle the system to get seen. Resources are so tight here it’s pretty disheartening.
Poor you, sounds like you've had a difficult time. I've had to chase up Hosp appts, and test results. When I was referred to specialist centre the letter went missing, and this took 6 months to be sorted. After that I've always made sure I chase things up if there are any delays.
Of course you must do what you feel helps you, I was just wanting to make you aware of general concerns regarding alternative treatments.
I hope you get the healthcare you need, and you feel better.
Ah thanks Wass. You’re right about some herbal stuff doing more harm than good, especially OTC stuff. Which is why I went to a qualified herbalist.
I know I’m quite lucky really, cos my PBC isn’t too bad...I dread to think how the healthcare system treats people who are in more urgent need than me.
I’m a bit like a terrier when I get going, so I won’t let this go 🐶. Not just for me but for others too.
I think we all need to be on top of our appointments and follow up letters and keep chasing.
I have to say in my experience when urgent things have been needed the NHS has not let me or my family down. I know that mistakes get made and those with urgent need get missed, but generally if Dr's aren't in a rush to see you then its because they consider you well enough to wait.
But defo keep fighting the fight, nothing wrong with being a terrier!!
I don't blame you for ranting, you should be monitored according to the easl guildline. If you not happy with your gp ask to speak to the practise manager. Our gp has got a referral system so I can ring and speak to doc within an hour.
Wow that’s good service!! We’ve undergone so many cuts in Wales our nhs is on its knees.
I’m pretty annoyed atm that my consultant wrote to my GP and I’ve not been contacted. Luckily it was only to increase my URSO slightly but that’s not the point.
I’ll be having a few words when I get to see him. Good case for referral!!
Just a quick update. After a bit of a rant to my local surgery I was given another blood test and saw a different GP who has advised me to do an experiment with the herbal tincture for one month. So I’m off it now as it might be masking the results for effectiveness of the URSO. I’ve now got an appointment with my gastro in February and another blood test scheduled for Feb before I see the Gastro. Latest results show ALP has come down slightly but GGT is rising. So we’ll see what being off the herbal does next month.
When I see the Gastro I’ll ask him about whether I should be seeing a specialist. I’m also going to contact my local PBC coordinator to ask her advice on specialists and whether my current Gastro is the best person to see at this time.
It is great that you are advocating for yourself to get the care that you need. Nice going.
Is your ggt within normal range but rising? When I was diagnosed my ggt was out of range, urso brought it back in normal range. Just thought you might want to know.
No, my GGT was 247 when diagnosed. On Urso and herbal combined it came down to 49 (43 is normal). Then I came off the herbal stuff and just on URSO it went up to 148. It’s now 129, down from October where it was 148 but up from 111in November. Just hoping to get these numbers under control!!
I’m convinced they help. I’m obeying my doctors advice in keeping off the herbs since Friday and last night I had the worst night for ages...the itching didn’t let up from 11pm until 6am. Ended up having today off sick from work. Hopefully I’ll sleep tonight as I’m knackered.
Definitely. Luckily I’ve been logging all my results on a spreadsheet, which I always take to the Drs so they know I’m proactive with this and well informed. They seem to take you a bit more seriously when you know the jargon and terms!! 😃
Hi Hils67 I also live in South West Wales and I am also very confused over my treatment for pbc I have not seen a specialist not sure there any specialist locally just wondered who you see and is at Withybush?
I was diagnosed December 2015 with PBC. I see Dr Fiaz Ali at Withybush. He’s a Gastroenterologist but also deals with liver disease. If I remember rightly it did take quite a while to see Dr Ali. So in the first year I was having bloods taken at my GP surgery in Narberth. I was also sent for an ultrasound scan . When I finally got to see Dr Ali it was about 10 months after diagnosis. I think if your levels are low and the URSO is bringing things down you only see Dr Ali once a year.
Whereabouts in West Wales are you? I live near Haverfordwest.
Hi Zoe, sorry I’ve just read your profile and see you’ve had PBC for 10 years. Are you on URSO? If you’re not getting proper treatment and regular monitoring through your GP you should ask your GP to refer you to Dr Ali in the first instance. GPs are not very good at calling you for a blood test, I think I’ve had to push for every test. If I forget they don’t remind me...so definitely worth getting along to your GP to ask for more monitoring.
Hiya, I hope you are ok, I see a heptology consultant every 6 months at the royal free in London for a scan and a consultation, every year I have a fibro scan ( I dont live in London now, but decided to keep going there) she’s got a terrible bedside manner tho x xx
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Still No Specialist
Pbc diagnosed but not been tested 
My specialist thinks I have PBC at age 19
