Morning, I would appreciate some advice. I had an episode of alcohol hepatitis 12 months ago following a couple of months daily drinking. Mainly been a 3-4 bottles of wine a week person. Also cholecystitis at the same time. Stopped alcohol immediately. Diagnosed with small gallstones. 3 months ago had cholangitis , but they never found the stone but mrcp picked up course liver structure. Two consultants diagnosed cirrhosis.
Last week another doctor tried to do a fibroscan, but he couldnt get an accurate result, he thought it was reading about 10. He has decided to refer me for a liver biopsy. He is thinking I don't have cirrhosis.
I have hypothyroidism, and also horrendous daily thigh and hip pain, under my feet is like walking on pebbles and my fingers hurt.
I have asked about AIH, PBC, and other hep conditions, but have been told blood tests are negative. I feel they have not bottomed a true diagnosis, and have been getting conflicting results/advice for a year. Will a biopsy help with a better diagnosis.? ?
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Freddie41
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A liver biopsy can give diagnosis of PBC due to cell changes that are said to be throughout the liver but there seems a conflict regarding staging if you have PBC due to the liver being a large organ and the fact that we can function with a small part of our liver of which the biopsy site might show to be or not damaged.
Depends on what a doctor is looking for in a biopsy. i expect in PBC there are different factors.
I know an ultrasound can in fact show how the liver is - I saw a programme here in the UK the year I was diagnosed, one man think late 30s he was quite overweight and shown live on air his scan that was said to show fatty liver. A man in his early 50s was said to be alcoholic and his showed cirrhosis.
Usually in PBC if there is doubt as to if a patient has it though suspected, then a biopsy would be required to give a diagnosis. I do expect a biopsy can disagnose other liver conditions and also if there isn't a specific condition (ie might be due to over-indulgence of alcohol or even obesity) a picture of how the liver might be. Usually scans are done as another option.
I've had several ultra sounds in last year which only picked up fatty liver. A CT scan didn't pick up cirrhosis and blood tests hadn't indicated cirrhosis. My GP and a junior consultant even said I could return to having alcohol again , due to the bloods showing good results. It was the MRI that indicated structural changes in the liver, which a senior consultant told me was Cirrhosis. They also don't listen to me when I mention the muscle and joint pain. I've been through rheumatology and blood tests didn't identify anything. With the different consultant i saw last week, getting an unsuccessful fibroscan result, I am confused. This was the first fibroscan I've had, yet I've been going to outpatient s for a year.
Sorry for waffling, but each time I go to the hospital I feel more confused and have more questions than answers when I leave, .
I have to say I find it odd that anyone in the medical field would suggest returning to 'having alcohol again' if you are having investigations for liver disorders.
Even with PBC we can actually have normal blood results as I probably did prior to 2010 when I started itching and my LFTs (liver function test) started to become abnormal. (It is the GGT blood that can show if inflammation of the liver is present. In PBC we tend to have this one taken each time we have the LFTs taken as it is usually abnormal as mine is still.)
Meanwhile as it seems uncertain what is actually wrong (there are quite a few other liver disorders and if you look on British Liver Trust website there are various publications you can see online on other conditions (ie PSC, Auto-Immune Hepatitis (AIH), etc)).
I would personally try to keep up with a good healthy eating plan now and abstain from alcohol. I know I was not an alcohol consumer that much pre-2010 but after my first abnormal LFT blood test I didn't have any. Since diagnosis I've had just 2 drinks of alcohol, both Christmas and one was just a small tipple of whisky in a cup of tea in the cold weather, the other a very small amount (quarter pint) of bottle beer.
After my doctor telling me the liver biopsy was to stage it and then not give a stage upset me, that was the only reason I had it done. When reading my test information and looking at the list of stages and what they are I have determined by myself that I am probably between stage 1 and 2. However will ask my doctor today what he would say the stage was. I do not feel sick and while I have itching, aches and pains and have for years I will never let them get me down mentally. (ok I have those days, but able to start my day over whenever I choose) the more positive I can be the happier I am. Hang in there everyone and try not to worry about things you can not control. Believe me when I say after losing my husband, mother and son in a few years of each other there is nothing I can or could do to control it. Take each day as a gift and try to make the best of it. Help others and do the next right thing. Thoughts and prayers go out to everyone struggling with PBC and the issues that go with it. Also to those who have issues that do not relate to PBC as well. We are all in this together now...
Due to the liver being a large organ and damage can occur in some parts and not others there has been some question about staging of PBC with biopsy. It is said though to definitely be able to diagnose PBC due to cell changes throughout the liver.
Itching and fatigue are also said not be an indication of what stage we might be at with PBC as some develop, others do not and never do.
Like yourself over the years I have lost my mother suddenly (she was 43 in the late 80s) and then my former husband a few years later leaving me with 2 young children and then my father died a few years later in his mid-50s. Just as I had got my life back together, children grown up and the youngest about to 'fly the nest' I met up with a man who I had wrote to for some years for the first time, we married 6 months later and then before we had been married a year in 2010 I started with the dreadful itch and then was diagnosed with PBC before the year was out.
I have just had to accept over time that there is nothing I can do and get on with life.
Peridot, I can relate and understand completely. I did go to visit my doctor yesterday and found it to be a simple well your LFT's are normal and keep taking the Urso. Already knew that. I asked if I could take supplements and he said yes if you think you need them but your blood work is good except your Vit D is still low (has stayed low despite the mega doses for year and calcium sups) but your B12 is good so no need to take those but I will keep continuing to do so. It gives me energy. As we all must do and endure this crazy disease. Take care thank you for your wealth of knowledge.
My only concern regarding vitamins and minerals is a possibility of perhaps overdosing on certain ones that we store. I expect over-the-counter ones are what is considered the normal mgs we need daily but I often wonder is it a case we feel better taking such, that sort of placebo effect?
I would get a copy of all your blood tests (this is your 'right' in the UK). I just ask my GP's receptionist for a printout when my tests are done each year. There may be a small charge for copying. But if you want older tests, too, it will cost more as it takes time for them to search and select.
Once you have the results, I would contact the 'PBC Foundation' [They host this site on 'Health Unlocked' and there is a link, at the top of this page, to their website: there you will find phone and email links to talk to their trained advisors]. Then talk through your results with them, and ask for advice.
If the blood tests are normal, it may be that the medics are looking for something else in the liver - hence the biopsy. So, if the 'PBC F' advisors can throw no light on your situation, you need to go back and ask more questions of your medics. If it is another liver issue, try checking out the 'British Liver Trust' BLT' as they have a site on here [on 'HU'] as well, and may be able to help more. But, while talking to both PBC F and BLT, I would have a good look at their sites and try to pick up all you can about liver health. Certainly in PBC, a lot of people find that they have to become their own best experts.
NB are you actually seeing 'Liver specialists? Or even PBC specialists?? If so, especially the latter, I would still try to learn more for your self, but go back and ask for more explanations as to why they are doing what they are doing. Phone their secretary, or get your GP to. If you are not seeing a liver specialist I think you need to see one.
Ultrasounds cannot 'diagnose' PBC. They can rule out other problems, and they can pick up large scale issues like evidence of general 'scarring' (which can have different causes, not just PBC or alcohol) , but only a biopsy allows an examination of the tissue at a cellular level, and show the exact type of damage to the millions of tiny 'biliary tubules' in the liver ,that is caused in PBC. As Peridot says, in the early stages of PBC this damage is not widespread, and staging of PBC is not always accurate. Actual diagnosis of PBC is based on 2 sets of blood tests [that is, the presence or not of AMAs (antimitochondrial antibodies); and, the presence of abnormal liver function bloods). Biopsies are usually done when a liver problem is suspected, but the blood tests and symptoms are inconclusive.
The pains you describe now seem to be being more widely acknowledged as typical symptoms of PBC, though itching and fatigue are the main ones. You should have your vitamin and mineral levels checked, as any lack of vit D and calcium could be causing the pains.
Thankyou both, Grittyreads and Peridot for your replies. Both of you reinforce the importance , of seeking out information about test results and increasing ones own knowledge of live conditions. I have this week registered via the GP to obtain my medical records, letters, results etc. The conflicting advice has affected my trust in the medical intervention being offered,And I think once I have more info I will speak to some of the support sights for their interpretation on my situation. Thanks again, every conversation I have helps me tremendously, and I appreciate your time in replying,
Biopsy tells u have far u liver had corroded and what stage its at.. Mines was a 8 witch is on the fine line. But mines is not though alcohol... I just an unlucky person..
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