Have they offered any hint as to what may have caused the liver to become so damaged?
As there is no ongoing inflammation and nothing obviously wrong with bloods I wonder if it's something that's gone on in the past but isn't doing damage now.
My hubbies AIH didn't show up as active on two biopsies and they've labelled it as burned out AIH. His bloods are normal and without sign of ongoing inflammation but he'd reached decompensated cirrhotic state before we knew he was ill at all. He does have what one doctor has labelled 'rogue antibodies' but that has never been explained to us. We wonder if a lengthy period on an anti-biotic for acne did hubbies damage therefore it could be potentially a DILI - Drug Induced Liver Injury.
There was a lassie posted on here just recently who had a very rare liver thing that also caused mis-carriage and I am going to search back and see what that was because I know that sadly you've had that issue going on too and wonder if that's potentially something they can explore.
i was on a medicine in my 20s that causes a hepatic liver injury so my drs marked me as liver disease at a young age I was on vyvanse it sprung me to the 100s then to the 300s for my enzymes before it was caught and quit
have they created a care plan for her? It sounds as though something is attacking her liver. Has she been screened for the all the hepatitis A-E and more? Viruses? Epstein Barr. To me it sounds like an Autoimmune disease. AIH. PBC.
Hi both, thank you for taking your time out to reply to me.
It’s a strange issue because we don’t know what the cause is. The consultant who is very senior in hepatology and actually underwrites some of the guidelines for the NHS, says that basically he cannot stress enough that her liver is functioning fine. He said it was like burning your hand and having scars but your hand still being able to operate as normal.
We don’t have a care plan yet, we have a follow up with him early March. (8week turnaround since last meeting) She will remain under the care of this clinic and have 6 monthly check ups. I hope in the next meeting we can get an update and see if there are other avenues they can check. She has been diagnosed with hemoglobin d trait but all other checks have come back fine including hepatitis, Alpha 1 etc.
She’s stopped taking extra supplements but remains on folic acid, vit D and CQ10.
The issue for sure has gotten worse since her many many previous ultra sounds showed no nodular lump.
I don’t want to disrespect our consultant as he’s very credible but I do wonder if it’s worth getting a second opinion?
We’re also looking into functional medicine with a qualified GP.
I dont think you need a second opinion. What her consultant has said seems to ring true. The monitoring is also pretty standard too.
Even with some damage, the liver is able to work pretty normally. Its only when there is lots and lots of damage that it starts to struggle. I think your consultants analogy to a burnt hand is quite a clever way of describing it.
Turning to the cause itself, this is where it gets trickier. Sometimes its dead easy to identify. There's handy markers in the blood or history that shouts out,"its me its me"! However, sometimes it can be a lot more difficult. Then it can take time, perhaps a long time, to identify (i speak from experience there, lol) particularly if the cause is transient that can be active at times and inactive at others. They have to sort of catch it in the act sometimes.
The good news is that, in lots of cases like that, it doesnt really affect how a patient is reviewed and treated. What's important is the regular monitoring that can pick up if there is any progression. It may also over time give a hint to possible causes too. There's even a condition called cryptogenic cirrhosis where they just don't find a cause. That is very uncommon and usually a cryptogenic diagnosis changes at some point when the actual cause does pop its head out of its hidey hole. Cryptogenic by the way is just a fancy way of just saying "unknown cause".
It can be very frustrating but you just have to be a bit patient with it and let the process look after itself. If you notice any new signs or symptoms, make sure you note them down, particularly if they are temporary, these too can help point to a possible cause or progression, but may also be needed to identify if any additional treatments are needed. Of course, if they are significant then always seek medical advice too. But some may appear quite benign and unimportant.
what is very important is what effect it is having. I have severe fatigue, breathless, unsteady on feet , severe itching and sweats, weight loss poor appetite, aches and pains. This is what’s really important, if your quality of life isn’t being effected then I’d say go with the flow. I have fortnightly blood transfusions and 8 weekly endoscopy to stop bleeding. . My point is I still have not had a concrete diagnosis.. These people are really clever and know what they are doing.. good luck
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