Gastroenterologist or Hepatologist - PBC Foundation

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Gastroenterologist or Hepatologist

Tracy-L profile image
14 Replies

Could anyone explain the difference between a Gastroenterologist and a Hepatologist and which one I should see for my PBC if there is a difference.

I saw a Gastroenterologist for my diagnosis. He told me I had PBC, told me that the tiredness was nothing to do with the PBC because my liver is not to badly damaged he gave me a persciption for URSO told me to look at the PBC foundation website and said he would see me in 12 months time.

I wasn't given the chance to ask any questions or get any further information, I have been back to my GP regarding the tiredness and was told that she thought it was related to the PBC and wondered why the consultant said it wasn't but she is reluctant refer me back to him.

Can anyone tell me if I can choose which consultant I want to see how to choose who will be best and how I can see the consultant I choose

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Tracy-L profile image
Tracy-L
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14 Replies
Jtxx profile image
Jtxx

As far as I know a Gastroenterologist deals with the whole of the digestive system wheras a Hepatologist specialises in the liver, gallbladder, biliary tree and pancreas. My consultant is a Gastroenterologist.

I think there are fewer practicing Hepatologist and if you wanted to go and see a specific consultant you would need to see your doctor who would refer you.

Not sure how much control you would have over it but I am sure if you did your research into the consultants and put your case forward to your doctor, I am sure he would refer you.

Btw, the most common symptom of PBC is TIREDNESS.

You can only ask, Good luck. x

LindaRose profile image
LindaRose

This is exactly why you need to see a hepatologist who is a liver expert and will know all about PBC. I had the same experience with a gastro, so insist that your GP sends you to a liver expert. You have that right to see who you think will give you the best treatment and most importantly the best understanding of your condition. So persevere, its worth it

EAJSWW profile image
EAJSWW

I see a gastroenterologist with an interest and speciaility in hepatology....

As JT says there are very few hepatologists in the uk, most are gastroenterologists..

You are allowed to ask for a different doctor, so maybe fnd out in your area who the doctor is who sees most people with PBC and or liver related complaints then ask your GP to refer you to this doctor or ask your consultant or his secretary if there is a nother doctor you can see. I changed my doctor about 5 yrs ago and have never looked back.

As for tiredness, of course this is the most debilitating symptom for many of those who have PBC, it doesnt seem to relate to the stage of the ilness or to the imbalance of blood levels... they dont really know what causes it! The Foundation have a leafelt specifically for doctors etc, they can send you one and you can poitn stuff out to him... as he recommended you speak to them, he couldnt then really ignore what they have to say...

All the best x

Yankeerose3 profile image
Yankeerose3 in reply to EAJSWW

I asked my GP dr to send me to a hepatologist and she told me it has to come from my Gastroenterology dr. I'm in the United States

in reply to Yankeerose3

That is not true. Your GP can send you to any specialist he/she deems necessary. The only reason you have to go through your GP is if you have insurance that warrants referrals & those are requested via the GP. However, if you have ppo or pos type insurance, you don't even need a referral. You can research & find a doctor yourself if your GP is not assisting. Hope this helps.

Hello all.

When my GP decided to refer me to the hospital to see a consultant, I received an appointment for the Hepatobiliary Medicine Dept and thought I was going to then see an hepatologist.

I then discovered a relative of mine had been visiting the Gastroenterolgy Dept same hospital and clinic for almost 20yrs to the same consultant I saw and she has bowel problems.

I did a Google search on the consultant I saw only recently and under the health authority there is a list of doctors/surgeons and their speciality. The one I saw does specialise in mainly bowel problems and it seems I went to see a gastoenterologist who see a broad spectrum of patients with digestive ailments and conditions.

Tracy-L profile image
Tracy-L

Thank you all so much for your replies, it looks like another trip to my GP I'm sure they have a seat reserved for me . I was hoping that now I have a diagnosis I wouldn't be quite such a regular visitor.

If the tiredness isnt due to PBC (which I belive it is) we will have to start the Merry-go-round of tests again.

I will be seeing my consultant at the endocrine Clinic (I am diabetic) in May, it was he who suspected PBC and ordered the test so I will probably wait to see him before doing anything else.

Jtxx profile image
Jtxx in reply to Tracy-L

I think you'll find that the tiredness " IS " due to the PBC, regardless of what the doctor says and as easysww said above it is the most debilitating symptom and it doesn't seem to relate to the stage of the ilness or to the imbalance of blood levels. There is so much that the doctors don't know about PBC that it does get frustrating at times. I think that if you educate yourself, then it takes the fear out of it.

We all have hiccups along the way but don't let it control your life. Stay positive. x

in reply to Tracy-L

Hello Tracy-L.

Fatigue and tiredness are part of PBC. I shrugged off feeling like this for prob a couple yrs before I developed the itch in 2010 and was diagnosed with PBC at the end of 2010.

I expect you had blood tests for iron as that can be a common cause of feeling tired also.

The only info I can give you regards this is to try to make small undisruptive lifestyle changes and like I did, you may notice as time goes by with the urso and improved blood test results due to it, you may feel more energetic. I can honestly say that tiredness and fatigue are not my problem with regards PBC since 2011, it is the itching that starts later evening (some evenings I don't have any) that is the real bug-bear for me.

GPs don't seem to be that sympathetic to feeling tired I have found. The one I saw when I had my last repeat blood tests beg Feb., he didn't seem to know much at all about PBC and it was only when my husband who came with me explained that it is no picnic some nights when I can't settle due to the itch as he works long hours during the day and rises at 6a.m. so it thus affects him that he seems to take a bit more interest.

On the subject of the itch, thought I might add a bit here as I know some of you on this site may enlarge it further. At present I feel I am able to get by without resorting to returning to the GP for any medication to perhaps try to alleviate this. I've never been one for taking any medication if it can be avoided and absolutely hate having to perhaps take urso for the remainder of my life.

All the best.

melisab profile image
melisab

I first went to see a gastro doctor and was not impressed. He too did not have much info to give me and made the prognosis seem very grim! I then went to a liver specialist and felt so much better! She had lots of info and gave me the reassurance that everything would be okay. She deals with a lot more patients who have PBC vs the gastro doctor who doesn't. Two elderly ladies that my husband met with PBC were diagnosed over 18 years ago by a gastro doctor who only gave them a few months to a few years to live! That was 18 years ago!! If u have the opportunity to go to a specialist why not take advantage of it!! They will have more info and treatment plans! Good luck to you!

EAJSWW profile image
EAJSWW

it is very reasonable that even liver specialists thought a poor prognosis was inevitable 18 yrs ago... even 10 yrs ago when i was diagnosed the prognosis was thought poor by many (i was given 10 yrs max to live!!)

Each year that goes by. more people learn more about this disease but I think it also our responsiblity to learn as much as possible about it and share knowledge witht he health professionals who do not know.

The more knowledge we share as individuals, the more people will learn about it. x

Claire-Isabel profile image
Claire-Isabel

Hi Tracey

You sound like you're having the same luck as me! I was diagnosed in 2004 following unrelated liver failure. Since then I've been seeing a Hepatologist, and he's not even a consultant. My symptoms have increased only really the last year. The most difficult is the fatigue, I have had to give up work because of this. I last saw the Hepatologist for a 2min appointment, So no time to discuss anything.

My GP does not believe the fatigue is due to the PBC. I've just had a letter from the 'specialist' saying also he doesn't think the fatigue is because of the PBC, as my liver readings are ok.

However, the folder from the Foundation, states that the fatigue is not related to the liver readings?!!

So, I've become really quite depressed again, everyone seems to think the fatigue is 'in my head', so I'm starting to believe them. Even when I point out the folder, they are not interested. I'm so frustrated with it all to be honest. So now I'm depressed, and fatigued.....

Val02 profile image
Val02

I know it is a bit stating the obvious but if you are not happy with treatment you receive you can change your consultant, but make sure you do your homework first. As far as GP goes, they wont know much but as long as they are willing to learn and are interested that is probably all you can hope for. My GP and consultant fax each other so she can check out things with him all the time, but she didnt know much to start with. If you can feel the medical people are on your side you will feel much better.

Jtxx profile image
Jtxx

I am very lucky with my GP as he was my mother's doctors (she also had PBC) so he knows a lot about it. I must say though that when I was first diagnosed I had to remind myself, and my father, that I was not my mum. She already had cirrhosis when she was diagnosed whereas I do not and hopefully that will remain the case for a long time to come. Too much living to do!! x

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