MISDIAGNOSED

[susanashworth]

Hi Guys,

Has anyone ever been misdiagnosed with PBC iiWAS DIAGNOSED 4YRS AGO AND HAVE BEEN TAKING URSO , NOW MY DR BELIEVES I MAY HAVE BEEN MISDIANOSED, I AM SO CONFUSED WAITING TO SEE SPECIALIST NEXT WEEK :(.

[Hidden]

Wow...didn't a specialist diagnose you? If you don't have pbc, what is causing the blood markers to suggest otherwise???

[Hidden]

This is from the American Liver Association about diagnosing PBC:

Because many people with PBC have no symptoms, the disease is often discovered incidentally due to abnormal results on routine liver blood tests. Once PBC is suspected, a blood test to check for antimitochondrial antibody (AMA) is done. This test is positive in nearly all people with PBC. A liver biopsy, where a small sample of liver tissue is removed with a small needle can help confirm the diagnosis. Imaging studies may be used to rule out other diseases, or to further evaluate patients once they have been diagnosed with PBC.

[susanashworth in reply to Hidden]

I had all of the above and now after 4 yrs they are not sure I am just I don’t know how I feel frustrated

[Hidden in reply to susanashworth]

I understand your frustration. It does not make sense. When you are on urso, doctors monitor the associated blood markers. If they are stable/normal on urso then why after 4 years does the doctor think otherwise. It is not acceptable that he didn't explain this better to you.

[Ballymahon2]

If its not pbc what does the doctor think you have

[susanashworth in reply to Ballymahon2]

He did not explain , I was suffering with really severe stomach ache and went to my local hospital where they removed my gallbladder , next day at home while sleeping the pain came back and again it was like labor contractions after tests and liver biopsy they called me late one evening to tell me I had PBC and started taking URSO and yes I still get the pain not as often I guess I have learned to live with the pain . Any advice would be appricated

[Ballymahon2]

I thought a liver biopsy would confirm pbc

[Hidden]

Did the specialist diagnose you 4 years ago? I would gather all your tests from then & during the 4 years & seek a 2nd opinion from another doctor, independent of the doctor that is telling you that it may not be pbc & the doctor who first diagnosed you.

How can you even trust anything they tell you after 4 years & this is only surfacing now?

I am so sorry you are dealing with this. You need to ask them the hard questions & make sure they answer to your satisfaction. This is totally unacceptable.

[susanashworth in reply to Hidden]

Thank you all so much , I see the liver specialist Monday morning and plan on taking my Son with me for support and I promise I will not leave without answers.

[Hidden in reply to susanashworth]

Good. Have him take notes!

[Ballymahon2]

Let us know how you get on sounds confusing esp since you had a biopsy

I havent had a biopsy just blood markers ultrasound fibroscan

Would be interested to hear what your specialist says on monday good luck

[susanashworth in reply to Ballymahon2]

Hi Anne, I am from Dublin how about you ? I go home every year just to get my Irish fix,

[Ballymahon2 in reply to susanashworth]

I am from mullingar westmeath

[PBCRobert Partner]

Hi, Susana.

If we can find a way to do it, we may be able to help you before your appointment on Monday.

Please contact us at the Foundation and see what we can do to help. We can Skype or Facetime if you are not in UK.

Yours,

Robert.

[susanashworth in reply to PBCRobert]

Hi that would be wonderfull thank you, I am Irish living in the USA I will look up your phone number it’s 7am here

[susanashworth]

Is there a phone number

[GrittyReads in reply to susanashworth]

There is a link to the PBC Foundation website at the top of this page - clicking on will give you email and phone details. Also, just clicking on PBCRobert (in his message) may give you a link.

PBC is usually diagnosed via 2 distinct types of blood test:

- the presence of AMAs is one; but that alone is not enough,

- you also need general bloods (more to rule out other conditions) plus specifically 'liver function tests' (lfts).

If the lfts are abnormal in a manner typical of PBC, then that - plus the AMAs - is usually enough for a diagnosis of PBC. Any one of these 2 tests, alone, is not enough for a diagnosis.

(Nb: Some people just have AMAs, alone, and never get PBC. While abnormal lfts alone can relate to other conditions, but that is when a liver biopsy would usually be given, although a liver biopsy may be done in any circumstance, to confirm if PBC is evident in the microscopic biliary tubules of the liver.

You need to get your test results to see what was done and what the results were.

But talk to Robert.

Take care, Gritty

[donna01]

So you do have the antimitochondrial antibody (AMA) ? I'm so confused...

[upintheair]

I recently read that a liver biopsy can show all four stages of PBC depending on what crop of cells was collected. The liver is a large organ and a liver biopsy shows a minute cross-section of the liver in a very particular place. It may or not be representative of the entire liver. PBC cases with negative AMA are much more difficult to prove. Without knowing what your test results are, it's hard to say why there's been an apparent reversal in your diagnosis. If your AMA went from positive to negative then that would be a reason to assume you were misdiagnosed.

[butterflyEi]

hi susanashworth

wow! this must be a confusing time for you, I hope your specialist visit can clear matters up for you. Do let us know how you get on.

best wishes

[susanashworth in reply to butterflyEi]

I will thank you

[Biddyb]

Hi, really interesting reading. I was diagnosed about 10 years ago with PBC then a few years later a consultant thought I had overlap AIH he put me on steroids after 3 years he decided to reduce the steroids and put me on immunosuppressant which made me really ill. I came off them and felt that I was getting nowhere with my consultant so asked my GP to refer me to another consultant at a different hospital. I have had scans, biopsy and regular blood work to find that my new consultant doubts my AIH diagnosis and is not convinced I have PBC I am due to see him in early February so like you I am confused. Also angry with my first consultant prescribing Steroids which I did not need, which have left me with many health problems. I will watch for your comments after your consultations with the specialist. Good luck I hope you get a result. Maybe the URSO helps with a liver that is not performing as it should!

[susanashworth]

Thank you!

[AdeleMalcolm]

Hi susanashworth. Just wow! If that's the way it turns out i.e. you don't have PBC then that's great news. Please keep us up to date and let us know what led to the misdiagnosis. We can all only hope.... Fingers crossed for you. Adele

[susanashworth in reply to AdeleMalcolm]

Hi Adele well I do have it it was not misdiagnosed as my GI Doctor was thinking, however my numbers all look really good and they have stopped the URSO for 6 months my liver scan was very positive no scar tissiu , I guess we can just wait and see blood work every month just to check all is well with out URSO 🍀

[Aussielouise in reply to susanashworth]

Why have they stopped your urso if you’re doing so well. Isn’t that the whole point of urso in that it’s supposed to bring the numbers down?

[AdeleMalcolm]

Hi Susanashworth. A shame it wasn't a misdiagnosis but at least they've got you early. I do agree with Aussielouise though - why take you off the very thing that'll keep the PBC at bay? A bit weird. I guess as they're planning on monthly blood tests they can start again quickly but it is an odd approach. Hope you stay well and healthy though and your PBC has minimal impact for you. Kind regards. Adele