I could do with some advice. I have been given a diagnosis of PBC about 4 weeks ago. I have had my bloods tested again since the doctor said she was referring me to see a consultant. These were my results crp level is 16 and esr is 30. She isn't concerned about these levels.
I have had a letter this morning to see the consultant and its with Gastroenterology is this correct? I thought she said it was with Heptology.
I have quite severe fatigue nausea and mild itching but I am taking sertraline.
I am 41. Any advice welcome xx
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Emma715
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You will find that an hepatologist is also in the field of gastroenterology. Hepatology is in the field of the liver or biliary system. I attended local hospital here in the UK back in late 2010 and my appt letter stated 'hepatology' and when I went to outpatients on the day (that was 13 weeks from referral for my first appt) it was in the gastroenterology dept but they have different clinics on different days.
I didn't get my diagnosis from my GP, he exhausted what tests via blood and he sent me for an ultrasound before referring me to hospital. The day I went to hospital the consultant said he was going to take additional blood to have antibodies checked, these were ANA and AMA for short. (My AMAs were found to be in a high titre (measure), ANA negative. With sympton I went to GP with - itching intensely for 2wks - and along with rising above normal LFTs (liver function test) this gave diagnosis. I started urso December 2010 when I was 46.)
I don't know what your figures are - 'crp' or 'esr' - as I don't understand the abbreviations. I know when I received the letter from the hospital consultant it just stated that my AMAs were of 'a high titre' and no figure.
I expect once you have seen the hospital consultant you will be prescribed ursodeoxycholic acid (urso for short, sometimes it is known as UDCA). The consultant didn't see me to inform me I had PBC in December 2010, he wrote to my GP who then had to relay the info to me and he was asked to write the prescriptions out.
Bloods are then normally checked at intervals and basically it is taken from there. I had fatigue myself back in 2010 but I was working pretty much flat out full-time and didn't really think much of it, was the GP who mentioned to me. It was the itching that got to me. I wasn't on any meds pre-diagnosis and not had any except the urso since. Your doctor will be well aware of any other meds that you are taking but I expect you'll still be given the urso. I dont' see urso as a medication, more of a supplement because basically it is a component of bile acid and we are just adding more to the digestive system. I've not had really any problems with the urso.
Ok thank you, I have tested positive for AMA and then they have re done my bloods twice since the positive. The crp and esr are inflammation markers apparently the doc said she wasn't worried but I've googled (as you do!) and crp should be 1-8 (mine is 16) and esr under 20 (mine is 30) I wont worry too much. I'm seeing the hospital next Thursday. I was referred 2 weeks ago but the first hospital couldn't see me until November so I opted for a quicker appointment.
I have a blood test done with the LFTs known as GGT which is supposed to be an indication of liver inflammation. The GGT is expected to be above normal range but taking urso can make the bloods return to normal but they're not expected to. Mine have come down over time and considered to be OK with having PBC.
Your GP should have been able to do the AMA test (mine always have done, even old GP 24 years ago), but AMAs alone are not enough for a PBC diagnosis no matter how high (NB the level of AMAs is no indication of PBC severity or likelihood, 10% of population have AMAs, and most do not develop PBC). The second important blood test is that for 'liver function tests' (lfts) and this is the main other deciding diagnostic criteria for PBC. If your liver function levels are abnormal in a manner that is typical of PBC (eg that usually mean ALP, GGT, and maybe AST & ALT being elevated) and you have AMAs, that is usually enough for a diagnosis of PBC. Symptoms, such as fatigue, itching and joint ache help in the diagnosis, but AMAs and LFTs are the actual diagnostic criteria, with a biopsy being the third criterion, if one of the other 2 is uncertain.
I don't know quite where the inflammatory markers that you mention come into things. They are not included in the official (UK/US/Eu) diagnostic criteria for PBC. I know I've had them checked when my GP was worried about something else, so that suggests to me that maybe there are a lot of other things they should be testing for - but I could be wrong about this. However, once my risk of PBC was noted (I don't have it, yet - only AMAs, and no symptoms - and may never get it) my GP did test for everything else under the sun that could be related to AMAs and all associated autoimmune conditions, so when you see the Gastro, you could ask about being checked for everything if inflammation markers are high.
I'm biased - having been wrongly diagnosed by a liver specialist, but one who did not specialise in PBC - so I would always want to see a senior hepatologist and preferably one who specialises in PBC. But as your condition is maybe not yet exactly determined, a Gastro will be able to point you in the direction of other paths to follow, and if it s/he thinks it is PBC, I would ask to see a PBC specialist.
Hope you get some answers, and soon. I know the waiting part is the worst, but you will get lots of support on here.
Thank you for your reply. I have raised lft since 2009 started at 80 then 120 now 156 so 4 times the normal range. Maybe that's why she has given me PBC as a cause?? It definitely seems like my GP is so relaxed she said oh well this is what it is and it's nothing to worry about and not urgent! This annoyed me because she said this when she really didn't have a clue. That's why I'm worried I'll get there and they will not know either!! Xx
My annual liver function tests usually involve about 10 different chemicals being tested - it varies on how thorough they are being - about 5 of which are listed in the 'PBC Foundation's' Handbook as being most relevant to the liver's health and the risk/diagnosis of PBC. My PBC Specialist says that at his unit, they are most concerned with GGT and ALP, though AST and ALT are often mentioned by others on here as being elevated (if you look on the 'PBC F's website it will tell you what all these are).
So ... it depends which one is high. However, it is important, if you have AMAs and elevated lfts.
While PBC does not have to be the worrying condition it used to be - especially since the use of the medicine Urso (and there are new medicines in the pipeline) - it does need to be taken seriously. Hopefully all will make more sense when you see the Gastro.
If you have not already contacted the 'PBC Foundation' (they host this site on 'Health Unlocked', & there is a link to their website at the top of this page), I would check their site and phone one of their trained advisors: they are very supportive and informed, and can give you guidance. If you join (it's free) you will be sent their 'PBC Handbook', which is invaluable. Meanwhile, I would read around on here as much as possible, and on the 'PBC F' site, and learn as much as you can about PBC. [NB A lot of what you read generally 'online' eg if you just Google 'PBC' is old, out-of-date and overly scary.] But the 'PBC F' is good, as is the 'British Liver Trust' who also have a site here on 'Health Unlocked'.
Remember the rest of us on here are not experts, and some of what we say is only opinion, or just plain wrong, but mostly we are quoting what our consultants and GPs say, after years of us being treated. So, to a large extent you need to educate yourself, as it sounds like your GP does not know that much - it's common, my GP told me I had PBC just based on the AMAs, which is wrong ... but PBC is a rare condition, and many GPs still don't know much about it.
Read around on here, and read stuff on the PBC F and BLT sites, and try to learn more. It is a very variable condition, not always easy to diagnose, so it does mean that lots of us have to learn to become our own best experts. Having said all this, above all, try not to worry. Stress is not good for any autoimmune condition, so do all you can to have fun, enjoy life and do the things that you love and make you happy. Living a full, fun, happy life is one of the best ways of hitting back at these sorts of condtions.
Wondering if you know what your high ALP, ASL, and other basic readings were, my doctor seems to know very little, I have read certain medications elevate these, but he refuses to wait and retest in a few weeks, he stopped the med Lipitor listed it under allergies, stopped meson more aches, feel goo. Think I am changing doctors
So for the type o. I stopped the med per doctors order, felt great day after stopping. No more leg aches or weak feeling. I think the meds elevated my lab work.
I just have to say that in the long term effects of not taking Urso, your liver numbers likely won't remain low. I know many have side effects of Urso, but we all have to weigh them against the long term consequences. Were your numbers improving on Urso? I hope you still have regular lab tests done to monitor your LFT's.
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