Hi im new to this site and new to liver problems. Up to about a month ago i was being treated for gall bladder problems and ithen suddenly my liver health was mentioned for the first time. Ive been jaundiced for about 5 weeks now and have jad terrible itching which has now thankfully stopped. Had numerous blood tests and about a month ago after inconclusive blòod tests which told i would have a liver biopsy the next morning. This didnt happen and i was sent home. All i was told about my bloods was that they had ruled out hepatitus.
Im due to have a liver biopsy on monday 12th April and then have to wait another 2 weeks to speak to the consultant. The last time i spoke to him was March 11th.
I had blood tests again last Thursday. At 1am in the morning i was woken by the phone and had q lady from the 111 aervice asking me to confirm my details who then proceeded to tell me that they had my latest blood tests and that they my liver was deteriorating. How did i feel. I said i felt pk and she said your doctor will probably phone you in the morning. Needless to say i didnt get much sleep after that.
My doctor did phone up yesterday afternoon . Eventually i got him to tell me that my enzyme level was 860. Didnt specify the enzyme. He told me that my level on March 11th when i was in hospital was 520. I was never told this by my comsultant. Ive wince obviously found out that it was very high even then.
Sorry for the lengthy post but all this has happened so quickly. Six weeks ago i was fine and planing things for the summer and now everything is up in the air.
My questions are:
1. Are there alternatives to having a liver biopsy?
2. Has anyone been diagnosed with these high enzyme levels?
3. Has anyone been called by the 111 service in the middle of the night?
I should point out that i have never smoked, drink only small amounts of alcohol, am not overweight and fairly fit. My only symptom which goes against me os that i have high blood pressure controlled by tablets.
Striggling to understand what has happened to my body to set this train of events into motion.
Any help or advice greatly received.
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MACMURPHY78
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One of my enzymes, ALP, was over 800 when I was diagnosed. I had more blood tests and they found autoimmune markers which was enough to diagnose me with PBC. Once on medications my enzymes have come down. I didn't need a biopsy, but if it was needed I would have done it. They only suggest biopsy if you really need it, so I think you should go ahead to find out what's wrong and get the appropriate treatment. Let us know how you get on.
Many thanks for your reply. Its the not knowing and lack of communication that is hard to take. Is your condition comtrolled by drugs. Have you had to make any lifestyle/dietary changes?
The not knowing is the hardest bit. A biopsy will tell them a lot. Mine is controlled by a drug called Urso. It has brought my levels down but won't help the damage that has already happened. My itching has gone down with my bilirubin though which is a relief.
My consultant advised me to eat little and often as I had lost a lot of weight, especially a snack before bedtime. He also told me to avoid all alcohol, but I never liked it and didn't drink any before diagnosis. Apart from that I have vitamin D on prescription because I was really deficient. The only other advice was how to manage the fatigue and pace myself.
Many people think that poor diet or alcohol are the only things that cause liver damage. However, there are 3 main autoimmune diseases that cause liver disease & I was in a similar position to yourself when diagnosed with AIH, an autoimmune disease( PBC & PSC) are the others. It really depends if they are looking at autoimmune diseases as to which liver enzyme they are talking about being elevated. For AIH, it is usually ALT, since ALP is associated with bile duct issues & AST is not liver specific. To diagnose AIH, they need to do a number of different tests & usually use biopsy to confirm diagnosis only when there is enough to suggest this already.
They don't usually carry out biopsy unless they think it is necessary. My liver enzyme levels were around 1000 when diagnosed. & I had jaundice. Meds brought it under control. Biopsy will provide them with a tissue sample or two to examine & there isn't an alternative to getting this type of information.
Hepatitis just means liver damage.
There are also genetic diseases, which can be confirmed by certain things in the blood results. If they are looking at autoimmune, then they would have tested for auto antibodies SMA as well as others.
Apologies if this is info overload, but hope it helps. All the best getting diagnosed. I must admit it wasn't the diagnosis I was expecting- thought I might get told diabetes( I was affected by fatigue a lot).
Many thanks for your detailed reply. It helps greatly to get info from people going through the same process as I've had very little from doctors and consultant s.
I got diagnosed over 10 years ago! I know from experience Consultants only answer questions you ask, so prepare your questions before the next conversation & write them down, so you don't forget. It is hard to get consultations with anyone at the mo, even when you feel things are not going well. Be persistent & you can always ask more questions here.
Totally agree with Carpediem11, write all your questions down, go in with a piece of paper or if it is over the phone tell them you have questions written down and go through them, write the answers. Its surprising how you feel you will remember and you kiss a lot. I would want to know why they are doing the biopsy, what are they looking for. Also what other blood tests will they do to rule out anything else, like autoimmune, hereditary conditions ec...
Make the most of it. I am finding it almost impossible to get a conversation with my Consultant, so don't let them fob you off. I hope you find out something useful. Also, make sure you ask what the plan of action is, with regards to follow up, frequency of tests, bloods who will administer meds, who to contact if you feel unwell or meds disagree with you.
Well I got the results of my biopsy and they were inconclusive which was very disappointing as I'd built myself up over the last 3 weeks to get the results. My ALT was the enzyme which was high but had come down a bit from the higher levels. Still didn't get to chat to the consultant as he was apparently called away. The doctor i spoke to said they were now looking at my blood pressure meds as a possible cause but now have had a call to say they have booked me in for a ERCP procedure on Friday. i had no idea what this was and having googled it, it seems like another invasive investigation. I've seen that there are less invasive treatments MRCP / CT Scan and would prefer to have those instead. Do you have any knowledge of these? He said they would be looking for any blockages in the biliary tree of the liver.
It's so disappointing when you hope they will find an answer, but then need more tests to get one. An MRCP is used just to look at the bile ducts- I've had 2 & neither of them gave them the info they were hoping for ( I think in part due to 1st one being blurred & 2nd one bile ducts weren't clearly visible, view blocked by gallbladder). Not invasive, just noisy.
I've had several CT scans, but they've never been used to look at the bile ducts, but for signs of clots in the biliary tree. Don't know enough about CT to say if it could give them the info they want, but it is worth phoning the scan dept & asking them if they could perhaps explain why not a CT? Not invasive & very quick.
Never had an ERCP. All I know is that they will use an endoscope, whilst you are in the MRI machine. Presumably this means they can " see" better where to look, but I have no actual experience of this. Maybe best to use the search button for previous posts on this.
Have they ruled out autoimmune & genetic conditions? Good luck getting answers. Did they say what they were looking for on the biopsy?
I find the registrars much better at answering questions, so if after the scan, you can see one of them, they generally answer more questions( just less experienced). Don't know if this helps, but all the best.
Thanks for taking the time to reply. I took the view that there was nothing conclusive as a sign that there was nothing serious going on. That might be misguided but that's the way I saw it. I find they are so cagey about giving much away which is very frustrating.
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