Whoes best Gastro or Heptologist?

[Lisacj]

I was diagnosed with PBC on December the 31st. I see a Gastro but consultant but I was wondering if a proper heptolgoist would be better. The guy I see is rather lax, not very communicative etc, really no help in explaining things at all. I have just asked his secretary if they could bring my June appoinment forward as I am suffering excruciating upper stomach pains, she said to go to A&E?? When I said NO she said she would get him to ring back Monday and maybe??

[Hidden]

Well there is a difference between a hepatologist and a gastroenterologist. The hepto specialises in the study of liver, gallbladder, biliary tree, and pancreas as well as management of their disorders.

A gastroenterologist focuses on the digestive system and its disorders. But a gastro can see a patient with PBC and it seems the majority of us do see a gastro. I am not sure who I saw at the hospital back in 2010 and 2011, I got the hosp appt for hepatology which I had to look up but then reading between the lines I am certain the consultant was a gastro. I discovered my mother's cousin who has bowel problems, has had for years was seeing the same consultant and she had nothing whatsoever wrong with her liver (or the other organs one apparently studies).

On looking online on the NHS site (as I'm in England) I noted the consultant I saw was actually down as gastroenterology.

I decided after attending the hospital a yr after diagnose and my bloods were on the whole much much better than prior to starting urso Dec 2010 I told the doctor that I wanted to cease going for the time being and I'd rather see the GP at intervals. I have to say I wasn't so keen on this consultant from the first day I ever saw him and I still cringe just thinking about it. He was rather rude I thought. He asked me what I did (I told him due to my new life (I had got married in 2009) and the job switch I did which I did regret my husband (who was with me at the time) decided I should quit, it was not doing our lives any good, we were constantly working and were rarely spending any time with each other. Plus I had my own private widows' pension from my late first husband's employer), so he commented that I 'was retired' to which I took offence. Then he was going on about the womens' cycle and seemed rather surprised that I had not yet started the menopause (I was only 46 at the time and by the way still haven't). I remember leaving his room that day feeling I had just aged considerably.

A few months later when I went to see him after diagnose (he informed my GP who gave me the diagnose), I was none too pleased when I just heard a voice shout down the corridor my name and I had to go and hunt for him. It was then I decided I wouldn't be going back at the 3mths interval that he wanted me so took the 6mths consult and then at this one I said I'd rather see my GP as I thought for what happened when I went (weigh and bloods, 5mins to see the consultant if that), just wasn't worth all the travelling to and from the hospital.

[Lisacj]

Hi Perdot,What a dam nightnare, I really dont understand why these types are still practicing!! I do wish my consultant had actuallty given me some help advise or something other than ,, you have PBC and it will probably be a whole decade before you would need a transplant,,, bye, see you in 6mths?? My gP is not much better all very nice but hasnt got a clue and thats after waiting 2 week for the appoinment.I am being sent to an immunologist as my lung consultant(who is great) is worried as too many immune ailments are now adding up. Why do we all seem to have to fight to be heard and get shoved pillar to post? It does seem such a common problem with so many people on this site,just getting some one to listen and really tell us what we need to know. Good luck to all of us.

[gracesofia]

Morning all . I was diagnosed only a few weeks ago and saw my gastro consultant on thursday. . . . . I came out and cried. .so rude insisted i had a biopsy would not listen to us and to top it all he completed ignored my husband. I have asked to be referred up to kings college in london . He was quite happy to almost dismiss me and tried to tell me thatwhat i read on the net about pbc was not good even the pbc toundation site and then proceeded to say that pbc only effects the elderly!!! He attitude was awful so hence i am asking my gp to be reffered to another consultant who i know is keen to learn/help/do there homework on people with pbc. So i am now waiting for my appt from the hepatogist in london. The gastro consultant made all my fears come flooding back to me. And todsy i only just feel better in myself. Good luck. Big hugs to al x

[Hidden]

My GP doesn't seem to like me either, I think he thinks I seem to be a bit too 'in the know' about PBC.

I know prior to diagnose another GP had decided I should go for the cameras bowels and stomach but I disagreed at the time as I had been wondering if I had PBC and did refuse. I was glad I did follow my own instincts as I had the AMA at the hospital on my first appt and the 'gastro' there never mentioned anything about other tests. The GP was surprised the 'gastro' never asked for a liver biopsy!!!

('gastro' - I wasn't sure if I was seeing an hepatologist or a gastroenterologist and this is the subject in question here.)

[Lisacj]

Hi gracesofia,he sounds terrible, were do these people come from, and why do they think they want to be be doctors. So glad you have asked to be seen by someone else. Are we all mad?? I dont think so, how dare another human being be so uncaring to someone who is vunerable and needs good solid advise.Like the research and money being spent on PBC it is relegated to the back cupboard, not news worthy or profitable!.The net is very limited and yes the compendeum from the PBC foundation is limited, but at least it shows someone cares enough to write about it and offer help? I hope Kings is better, I'm going to the Brompton, being refered by my lung specialst to an immunologist. My immune system is causing more and more problems, so hope they loook at me as a whole person and may get some real help.Let me know how you get on, how we dont wait to long for the referal? Good luck,,x

[Axl888]

When I have hospital appointments at (The Royal Derby), I go to Hepatology. The consultants that I usually see are Dr Lawson or Dr Austin, both Gastro's. Dr Lawson diagnosed me having a liver condition when I was in the department for an endoscopy he was about to perform to check my ulcer had healed!!! He diagnosed me from noticing a rash on my chest/neck area. He is extremely clued up asbout PBC and Dr Austin did my liver biopsy. I sometimes see other dr's whose names are not familiar so assume they have a rota system or something. I have always been happy at my hospital appointments except for one time when the dr did not speak very good English and did not seem to have any idea about PBC.

[Axl888]

Lisacj - Can I ask what your problem is with your lungs? Also what does an immunologist do?

[Lisacj]

Axl888 hi, Yes i have Rheumadtoid arthritis, bronchiectasis,chronic sinusitus, I am IgA deficient, sjogrens(just confirmed). My very good lung specialsit is doing the referal via my GP. She feels there is more that needs looking at as all are immune related not so much the bronchiectasis, but wants an overall picture of my symptoms looked at.Going to the Brompton so will see.Immunolgosit looks at why the immune/autoimmune system is failing etc.Any help?

[Val02]

I changed my doctors until I got ones that were on my side!! Best thing I did but can seem a little overwhelming when your up against it.

[WendyMarie]

When I was diagnosed in Dec.2012, my gastro Dr. very briefly, told me what PBC was & were calling the Urso prescrip. into my pharmacy & if I had any questions, feel free to ask. My husband & I go to an appt. to ask questions & the PA admitted they could not answer any of the questions & referred me to Duke Medical Center, a top Liver transplant centre in the U.S., as they don't know much about PBC themselves, nor really what to test for & how often.. (i.e.-bone scans, thyroid, liver cancer, ultrasound, etc.) So Duke Medical will have to tell the gastro Dr. necessary info, as well as me! I asked if I should see a hepatologist v.s. gastrointernologist. They tell me that hepatology is a specialty, "under' gastronology, & that either is adequate to treat PBC, however, I personally think I prefer to be seen by a hepatologist, since the liver IS their specialty.

[LindaRose]

I have been under the liver unit at King's for nearly 20 years and find that on the whole they really know what they are talking about. They see a lot of patients with PBC and although no-one has all the answers, I have always felt they are PBC specialists. So good luck ! at least you will be seen by hepatologists. rather than general gastros ( I think!)

[Twinkle26 in reply to LindaRose]

Hi I know it's a few years now but who did you see at kings and do you still have apps there.

Thanks

[Hidden]

Hi, I was diagnosed in November and was referred to hepatologist at my request. Consultant is excellent and specialises in PBC. Remember you can request who you are referred to!

[Pat_H]

I've been seeing a gastroenterologist who explained to me at our recent meeting that the hospital has been without a hepatologist for a little while (since before I was diagnosed), as the previous one had left and it has been difficult to recruit a replacement. As they have now recruited a new hepatologist, it is that person I shall see in the future.

Is the reason why so many of us see gastroenterologists because there is a shortage of hepatologists in the NHS? My next visit isn't for six months, so I hope the new hepatologist hasn't left by then!

[WendyMarie]

Upon my recent visit to a hepatologist, I discovered that hepatologist are NOT very common.The hepatologist I saw, did his internship many yrs. ago under Dr. Gershwin & with Dr. Bowlus & Dr. Kowdley. He was also the director of the Liver Transplant Centre at this hospital. After a person graduates 4 yrs. medical school, 1 yr. residency, then 2 yr. gastrointerology, 1 yr. residency, then 2 yrs. hepatology, 1 yr, residency. So, not too many people continue their education for that many years! They only work at very large, top-rated hospitals, where there is all the latest, modern,medical equipment, etc. & other hepatologists, so they may work together as a team. There are only 3 hospitals in my entire state,that have hepatology teams. My hepatologist, explained all of this to me & said it is ok to continue to see a gastro Dr. unless, you are having major problems with your liver disease.