I have an excellent gastroenterologist but should I be asking to be referred to a liver specialist?

[Goose60]

I'm going to see my gastro in a couple of weeks for the first time post biopsy - I got my diagnosis by letter. Should I be asking to be referred to a liver specialist and, if so, where do I find details of consultants who specialise in PBC?

[Hidden]

Hello Goose60.

I think it depends on where you live really. If you are in the UK then if like me, you might only have the option of a gastro-enterologist or hepatologist at the start of diagnose. I was referred to Hepatology Dept of the hospital back in 2010 but when I turned up eventually for the appt (it only took 13wks, that was my first one and I'd not undertaken the AMA blood test at that point - had that taken first hosp appt), I saw a gastro but he said he did see patients with PBC (on my 2nd visit to him 3 months later after I got the diagnose from the GP who had received letter from hospital doctor).

I suppose it depends how you feel really. I know when I presented with itching and fatigue in early 2010 at the GP surgery, I was apparently deemed at a later date to be early stage PBC.

I only saw the hospital doctor, same one for 12 months over 3 visits and then I decided it was not exactly a bunch of roses going there at intervals with all the trekking there (takes over an hour's walk on foot just to get to the hospital) and for what happened when I was there, spent more time walking to different areas and hanging about than I did seeing the doctor (got 5mins of his time!), I asked if he'd discharge me back to the GP for now. (He agreed and it is almost 2yrs since I went to the hospital.)

I may or may not have to return to hospital in the future, depends how it all goes with this PBC lark. I know I'm much much better than I was at the start of finding out I had PBC and this yr the GP has said bloods only need doing every 6mths as opposed to the 3 months I was having at surgery previously. Suppose there's a good graph on my bloods now to see a bit of a wavy line and so far they are panning out pretty well.

I think if PBC got much more serious then I expect one would be referred to a Liver Unit within a specialist hospital like St. James at Leeds or Queens at Birmingham and I believe there is also the one at Newcastle. Not sure if there are any specific liver specialists at standard NHS hospitals though as it has to be remembered that a gastro does also cover liver and also an hepatologist covers the liver as well as other surrounding organs connected.

[Goose60 in reply to Hidden]

My GP hasn't been exactly on the ball with this. He'd been telling me for ages that my high LFTs were 'normal for me', wasn't interested in how tired I had become (except to say my Thyroxin dose was sufficient) and almost dismissed the gastric pain I'd had for almost 6 years. Eventually referred me to my present consultant who is a lovely approachable man, he referred me to University College London Hospital who diagnosed Sphincter of Oddi Disfunction and who raised the possibility of PBC. Subsequent biopsy and diagnosis. I haven't had to see my GP for some time and think the consultant will continue to treat me, not the GP. I suppose the prescriptions will have to come via the GP though! Luckily my local hospital in Kings Lynn is only about 15 mins walk from my house!

[Hidden in reply to Goose60]

So you are in England. I find it odd that a GP didn't pick up on what you say are high LFTs. I got print-outs of mine at diagnose of all the ones I had had during 2010 in Dec 2010. I could see that the lab who tested the bloods had put down the figures and at the side are what are considered a normal range so any GP should have been able to have noticed what was not right.

I think my own GP dragged his feet somewhat as I thought when I went for my first hospital appt within the East Lancs Trust (one that is one of the worst in the country it has come to light recently!), I had thought the GP had taken the AMA test at surgery as there was one I never managed to find out what it was prior to going to hospital. (It was for copper for Wilsons Disease, that was fine.)

I have had bad experiences with GPs since daignose. I have changed surgeries twice in 3yrs due to the hassle I get. My last one seemed happy to have telephone appts when the results came in even when last yr they came back on the up. I then had to go in and see him Oct 2012 and had had enough by that time. Last time I got the results from this surgery, the GP never even bothered (this was Feb this yr) to put a message on the print-out for me, I just got it from the surgery and was expected to read thru it myself! Saying that it used to be a damn hassle to get the print-out from this surgery. I switched surgeries in April and so far so good but....due to the fact I take the Wockhardt urso, I have recently found the surgery notso helpful. I messaged, got back a message from a GP there telling me to take it up with the pharmacy so I did and now I expect to have to go in to see a GP for a repeat script soon as I don't think otherwise I'll get an amended one now Wockhardt 300mgs have been recalled.

[Goose60 in reply to Hidden]

He picked up the high LFTs but originally thought they would come down after I had my gallbladder out but they didn't. That was when he said that they must just be normal for me!! I've only seen the LFT figures in a letter from the London hospital to my local consultant - they at least copy every letter to the patient unlike my GP or local hospital. This is all a steep learning curve for me, thank God for sites like this one!

[Hidden in reply to Goose60]

Hello Goose60.

Well if you really want to find out more about yourself, I'd ask the GP for copies of the correspondence between hospital and him/herself when you next see one at your practice.

I didn't ask for any of my results in 2010 until Dec when I went to see the GP who got an admin staff to ring me to ask me to go in as GP had heard from hospital and wanted to give me a prescription. (That was notso funny as the woman who rang then gave me an appt which was 5 days later with a weekend in-between! I asked what the doctor was to give me as said I knew she couldn't say much. She tried to pronounce the urso.... and I knew straight away I was going to be told I had PBC. So I wanted an appt as soon as not 5 days later. At that point my husband who had come in from work took the phone and insisted an appt was given for the time the rest of that day's surgery was on (an hr!) and an appt just 'came available'.)

Due to the hospital consultant putting in his letter about my Vit D levels and stated, 'Not bad', I wanted to know what that meant as without a figure of some sort a bit unexplanatory. The GP printed all the correspondence and blood results from earlier in 2010 for me whilst I was there.

No-one had said to me and still never has that in the 3 months between the blood test at the GP in 2010 and the hospital appt (end Oct 2010) my LFTs had actually come down a bit without any medication as I didn't start urso until Dec 2010.

I've had battles with my GP surgery to receive the bloods in print-out. At the last practice I left April, the Practice Manager rang me in 2011 asking me why I wanted the bloods and had the audacity to ask what for and what did I do with them??? She stated it wasn't 'the norm' and it took me until Dec 2012 to sort that out at that practice with regards to receiving the blood results on print-out each time. I don't take note in-depth like I did back in 2011 I have to say, a quick glance these days is normally sufficient and then they are put away.

I know it is like locking the stable door after the horse has bolted but I find it odd that a GP could think that LFTs could start to drop following a gallbladder operation but equally suprised that the hospital didn't pick up on them as bloods are the norm whilst in there. As we know PBC isn't about the gallbladder as such, it is where at the start antibodies are attacking the bile ducts.

Anyway hope you start to have better luck now and also armed with a bit more information you start to feel more confident.

[Maggs3petts]

Hiya Goose

As peridot rightly states it would be your call. I would just say if you're concerned about your treatment then ask to be seen by a Specialist. My GP is and has been brilliant since diagnosing me with Rayauds about 25yrs ago. The PBC was detected by my Consultant Rheumatologist - I see her @ Ulster hospital, Dundonald, in Co Down, NI - diagnosed PBC in 2006 and then referred me to a brilliant Consultant Gastro-entrologist @ Belfast City Hospital. Both Consultants take time to listen and I normally see each one twice/year. However, in January they thought I had Lymphoma and so many tests followed. Thankfully they ruled out lymphoma and later celiac disease. (Still looking for cause of symptoms). I've seen each one of them 3 times so far. Due to see the Rheumatologist on Tuesday and G/E in October. My GP is also brilliant - he listens and before each hospital appt he runs blood tests and I take the results with me to the appt so the Consultants have up-to-date info. I have been very fortunate with great Doctors. I also have; asthma; anaemia; depression; fibromyalgia; hiatus hernia; insomnia; migraine; oesophagitis/reflux; scleroderma and sciatica as well as the aforementioned Raynauds + PBC . So they have a lot to consider when treating me. This system works for me but if you feel anxious or concerned that its not working for you then I would ask to see a liver Specialist. All the best, hope it works out. x

[Goose60 in reply to Maggs3petts]

Thank you for replying Maggs. I'll see how it goes on 9th Sept and then think about what I need to, if anything. Hopefully I'll feel confident to stay with my Gastro consultant.

[Maggs3petts in reply to Goose60]

You're welcome. See how it goes on 9th and then if you're concerned asked to be referred to another Consultant Gastroentrologist. Mine is brilliant as is my Rheumatologist, my Haemotologist and my GP. Had a previous Rheumatologist who showed no interest at all in Raynauds, scleroderma, fibromyalgia or arthitis. So got referred to a different one at a hospital closer to home. She is much better. Listens to me takes notes - doesn't just reach for an appt card as soon as I go in - the way the other one did. New one has worked out much better - she's the one who discovered the PBC. Good luck.

[sistergoldenhair]

Hi Goose, A gastroenterologist specializes in liver disease, a hepatologist specializes in the more in the transplant part of it. I have always believed that if you don't feel comfortable and trust your doctor, it's not going to work out. Doesn't mean the doctor is not a good doctor, just probably not for you. I research licenses, complaints, schools, etc online and then also ask friends if they know anyone. If you like you doctor, maybe some of his practices on how he relates to patients aren't settling with you, I would just have a one on one with him/her and let the doctor know your concerns (like receiving dx in the mail). It may be as simple as that. I have had to change doctors on one occassion because I didn't feel they took my issues serious.....and I am not a whiner! I really like my gastro, he is kind and takes time with me to explain things and even goes further giving me more info. He also knows and has worked with some of the staff where I would go for a transplant, and has followed up with recovering transplant patients. The one before him was sort of abrupt and I really didn't feel confident with. I have been with the same clinic that dx me 18 years ago, my first doc who dx me only works in the hospital now ( he was fabulous) and I have seen him at the hospital when things started to progress more, he remembered my whole case!!!! The second one I didn't really cared for but I really only had to see him once a year for blood draw and medicine refills. He retired. The one I have now is fabulous and I thank God I have him now that my PBC is progressing. Sorry, I guess I got a little longwinded:/ Just be honest and go with your gut, it's usually right. thoughts and prayers, cyndy

[Goose60 in reply to sistergoldenhair]

Thank you to everyone who has replied. I feel more confident now! As Mr Spock would say "live long and prosper"!!

[sistergoldenhair in reply to Goose60]

As far as I know, your gastroenterologist specializes in liver diseases. A hepatologist would be needed if you get to the transplant stage.

[Hidden]

I started seeing a gastoerterolgist first when diagnosed then was transferred to a hepatologist when needed a transplant. Am now back with the gastro who checks the state of my new liver but also keeps track of PBC.

[valco]

I have had PBC for over 10 years now and have only ever seen a gastro enterologist. I would have to travel much further to see a liver specialist but I'm sure that if I had complications then it might be preferable to see one, in which case I would be transferred.

My registrar knows me well and is quick to send me for the appropriate blood tests and investigations necessary and is well able to answer all my questions, so I don't think you need to be concerned.