Feeling fed up

[MrMidnight2021]

I’ve had deranged LFTS on and off for at least 6 years now with Alt going up over 1000. Second time seeing specialist and apart from signs in liver biopsy pointing to AIH the scans don’t seem to show much. Don’t seem to get told much by Specialist and don’t seem to keep me updated. Had a MRCP on October 1st and when I asked last week they said results would be given during next follow up appointment mid Nov. Got a letter now saying that next appointment will be 1 Dec. It’s very frustrating but I don’t want to sound like some sort of hypochondriac.

[AyrshireK]

6 years is a blooming long time to have been having such serious elevations of ALT and with a liver biopsy indicating activity that would suggest Autoimmune Hepatitis the next step should be to actually start you on some medications to bring the inflammation under control (steroids) and then to tamp down your immune system going forwards (immune suppressants). AIH is a flaw with your immune system rather than the liver, the liver becomes damaged though if it remains under attack for a prolonged period. A positive response to steroids in reducing the inflamation would be a confirmatory part of the diagnosis of AIH. It's good news that scans arn't revealing that any damage has occurred (yet!) but they really need to start getting you some treatment before damage is done. My hubby has cirrhosis due to AIH though his was never picked up as he was never 'ill' before he actually presented with advanced, decompensated cirrhosis symptoms.

You are not being a hypochondriac if bloods and tests have so far shown you have got serious inflammation in the liver and yet you are not on a treatment plan you have every right to be being a little concerned and annoyed that you arn't getting the correct level of care.

Get your list of questions written down for your appointment when it finally comes and don't leave the room until you've had them all answered to your satisfaction. If you've not done so already, get clued up on AIH so you can ask pertinent questions and seek correct treatment.

If they put you on steroids - prednisolone is usually the go to one, it can cause false hunger which can lead to weight gain, you can also get mood swings, it can irritate the stomach so make sure they give you something to counteract that - a PPI such as Omeprazole plus something like Adcal D3 to counteract the calcium/bone stripping properties. Make sure you ask about how they are going to monitor if it is working i.e. blood tests to see if inflammation is coming down and then what the plan would be for reduction as you don't want to be on high dose steroids any longer than you need to as it can cause other issues - diabetes, osteoporosis, tooth loss and more.

Then should come immune suppressants of which there are several types so if one doesn't suit they can swap it for something else. Azathioprine is usually the first line immune suppressant.

As I said learn about the condition so you can ask pertinent questions. britishlivertrust.org.uk/in...

I take it they were also looking for something else by doing the MRCP. So, you need to find out what they were looking for there. Ask questions, it is your health so you have to be your own advocate. Some specialists are bad for not giving away information but if you have a bit of knowledge and probe then they will generally answer questions.

Best wishes, hope you get your appointment and results very soon.

Katie

[MrMidnight2021 in reply to AyrshireK]

Thank you for your great advice. I am diabetic and the MRCP was to see if there was any narrowing of the bile ducts I believe. The specialist was wary of the pathologists indication of AIH due to being very rare and the anti-smooth muscle antibody being only very modestly raised.

[Buddythezhu]

Scans will not show AIH, the only way to diagnose AIH is with a liver biopsy.

[DebbyJ1 in reply to Buddythezhu]

They have had a biopsy

[gertrudestein in reply to Buddythezhu]

Biopsy is not necessarily the only way to diagnose AIH. I was due to have a biopsy which was never carried out on the day because of my poor clotting times (they took several blood samples before deciding to abandon the procedure).

But when I was then put on a fairly high dose of prednisolone with immediate good effects, my consultant concluded that I did indeed have AIH and we proceeded from there.

[Buddythezhu in reply to gertrudestein]

Well of course there are always exceptions but most Heps wait for the result of a biopsy to confirm AIH and start medication.

[DebbyJ1]

I would say same as others biopsy showing signs you should be on some sort of meds steroids at least

Have you had a fibroscan ?

[Kristian]

Oh dear, I feel your frustration with not having a diagnosis. Please don't take that as a particular slight on you or your specialist for that matter. Sometimes it can be very difficult to determine the true cause. I speak from experience there unfortunately i only got a final diagnosis after transplant. Up to that point there were a few suspicions of what it could be, but for much of the last few years it was just put down as cryptogrnic cirrhosis, which basically means cirrhosis of unknown cause in layman's terms. It did in the end turn out to be one of the early suspicions, so they were on the right track even if not all the evidence was there to prove it.

The fact that you've had an MRCP could indicate that they are considering, or at least checking for changes in your bile ducts that could point to a cholestatic cause of your liver issues. If you ALP is raised in addition to your ALT, then that could steer them in that direction, particularly if you haven't yet developed any or much visible fibrosis or scarring. That was the case for me, and it turned out that was my cause. I had PSC (Primary Schlerosing Cholangitis). But there are other cholestatic diseases that could have similar effects.

Unfortunately, all the MRCPs I had done were inconclusive of the cause, as were my liver biopsies. They did show fibrosis and then scarring complicit with cirrhosis, but again, some of the tell-tale biopsy signs associated with my disease didn't appear to be present.

Unfortunately, in some cases (like mine, and it looks possibly like yours too) it can be particularly tricky to get to a diagnosis. That's just liver disease for you. PSC is a disease that is more prominent in men and commonly develops in the 30's or 40's. So it's not surprising they'd want to check for that before going down the line of assuming it's AIH. I'm pretty sure they'd like to avoid long term steroid use if they can as that in itself isn't without complications.

For the moment, try and take some solice in that none of your scans so far have indicated cirrhosis. So whilst something is clearly going on, it's not yet over topping your liver's own natural defences and ability to regenerate.

As with what others have said, do ask your specialist when you see them, what their suspicions are and what are the next steps in the process. Also, dont read too much in to the time it takes for scans etc to be reported back. It's not unusual to have to wait till your next appointment to get feedback on those. In my experience that was the norm, although occaisionally they may feature in the sum up from previous consultations that were sent to my gp, which i get a copy of, if the results had come through in time.

Hopefully you'll get a bit clearer picture at your next consultation. Good luck.