wow, I had never heard of PBC until this week. I have had and itchy palms and soles of my feet for a about a year and discomfort under the right side of ribs and in my right shoulder area for many years. Last year I went to the doctor for the itchy palms, terrified I could have pancreatic cancer after reading that it could be itching in palms could be an early sign...I had complete blood test ( all normal but very low vitamin D) and an ultra sound which showed multiple gallstones and non alcoholic fatty liver....Fast forward til this week, went back to the doctor for still itching palms and feet and relux, this time I saw the Doctor, not the Nurse Practitioner..He looked at my records, said all my liver and blood test were normal last year and in December when I came in for blood work, but he ordered another blood test and asked if I had any family history of PBC....ummm, no..ask if I was tired alot..not really, actually have trouble sleeping....asked me about urine, Normal, my stools, normal...
So, waiting for blood test to come back...and he may order another ultra sound...he is testing something i hadnt heard of , something about inflammation...So I am waiting...ughhhhh
I am 50 year old mom and grandmother who lives in Nashville...Glad I found this site, I have found other sites where people are not as positive, I have learned alot from reading the post of the folks here...I am the glass is half full kind of person...
Is there any certain test I should ask for.??
And is it normal, if I do have PBC, that the bottom of my feet and palms of my hands itch mainly at night?
And is there a connection with Non alcoholic fatty liver?
Thanks all,
Lee
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tnfilmgirl
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Itching is a symptom of PBC and one of the first that most people get. Luckily I don't have that symptom, but just a smidge here and there and mainly in the morning.
As far as I know there is no connection between PBC and NAFL disease. The ultrasound he is giving you is to rule out other things, such as obstructions to the biliary tree, tumors etc. You will want an AMA test done as well as to know whether your ALP is high. That may be why he is investigating this, or he may be ruling out other things that could be causing it due to the itching you have.
In the US, if you are positive for the AMA, have high ALP and have other symptoms they will recommend a liver biopsy to diagnose and stage your PBC. People can have a negative AMA and still have PBC, but its a small percentage.
The other blood test he did, may have been the AMA test, and that is why he is investigating, as people PBC are almost always AMA positive. You can be AMA positive and NOT have PBC, but with your other symptoms, he may suspect that.
This is a great place and you are right, more positive than other sites I have been on. There is a lot of crazy stuff out there on PBC that is really dated as well and so clinical that it can scare you when you are looking into this stuff. Lots of people will reach out to you. Hope all is well with you.
Hi, tnfilmgirl. I am just south of you in north Georgia. When my liver tests came back with elevated numbers, my doc ordered a mitochondrial antibodies test, a GGT test, some others to check for other autoimmune disorders, as well as an ultrasound. I had a single gallstone (surprise to me!) and the first diagnosis from the ultrasound was non-alcoholic fatty liver. The mitochondrial antibodies test and GGT both came back with elevated numbers and the detail on the lab report was the first time I saw the words "primary biliary cirrhosis". My first response was "What's that???" since I had never heard the term. Six months later when the alkaline phosphatase level was even higher, I was referred to a gastro doc who ordered a liver biopsy after taking history and reviewing lab records. I was told that the biopsy was necessary to make a definite diagnosis of PBC. My samples had inflammation, granulomas, and mild fibrosis: all different stages of the disease.
As I understand it, (and I am still learning) bile acids leak from the portals (where it is made) into the liver tissue. This sets off inflammation that the immune system responds to with white blood cells that surround the damaged area, forming granulomas. As they heal, they scar over (fibrosis) so that the portal area can no longer make the bile acids in that location. So over time, the liver is able to make less of the bile acids required to digest foods so that you get the necessary nutrients for the rest of your body. The ursodiol is a natural bile acid that supplements what the liver is making and takes some load off the liver; thus, it slows the disease progression.
The itching is usually worse at night and is one of the primary symptoms along with fatigue that the disease process is occuring. I don't know of any connection between the two diseases, but I suspect they can both be present in some people. I recently read a report that probiotics can help reduce the fatty desposits in the liver if they are taken daily over several months. So right now, I eat yougurt twice a day in addition to many more raw vegetables and fruits in my diet.
I know waiting is difficult, but I am learning that it takes time for the meds to work. So far, all my lab results have shown climbing numbers with each test. I remain positive and I hope that the next one in 2 weeks will show stable or declining levels. Best wishes and welcome to the group!
Hello tnfilmgirl.
I was diagnosed with PBC in Dec 2010. I had started itching all over my body at random areas March that year. At the time I was also fatigued but never thought anything of that due to working overtime in my full-time working week.
I live in the UK and under the NHS they sort of follow a maze and that starts with questions. My GP originally thought I was allergic to something and recommended piriton (antihistamine) tablets. I bought them over the counter at pharmacy as they were cheaper as same as what was on prescription and only took for a couple of days and felt really bad from them so I quit. The GP ordered blood tests meanwhile and I had to return for those the following week. That showed the LFTs (liver function test) to be raised and some other bloods he took were also abnormal. That took me on the path to further bloods and then the GP said that he'd undertaken one to determine from the LFTs whether it was liver related or bone related as you can have elevated LFTs with a bone condition also. I hadn't taken any medication as such for many years as they can affect certain blood tests.
Then once it was determined I had a problem in the liver area I was sent for a scan which showed up pretty much normal, as did surrounding organs. Meanwhile I still itched regardless. I had a few other bloods, one was for Wilson's Disease which is excess copper in the system) and then I was referred to Hepatology at the local hospital. The appt took 13wks to come round and by this time it was the start of Nov 2010. I saw the hospital consultant and apart from my abnormal LFTs and itching and fatigue that was all that I was experiencing at the time. I had spotted PBC in a library reference books months prior but never mentioned it to any doctor as I wsan't certain nor did I want anything that was long-term. I also think it can be more worrying to think you have something so I switched off but did take note as I do of what was going on and what was happening. The doctor at the hospital said the first place to start given my ulstrasound had come back pretty normal but I had itching and fatigue he'd do an antibodies blood test that day. I had the ANA and also AMA and he relayed the information to my GP who then informed me Dec that I had PBC and started on urso.
Not all symptons of PBC are experienced by everyone. Some people never itch regardless with PBC but it seems that a lot do. For me the itch was the start of it all as if I had just have fatigue I'd not have thought anything of it.
If a doctor knows about PBC then they will certainly know that having an antibodies test (the AMA is for PBC - mine was with a 'high titre' but my ANA was negative). There is also another condition known as PSC which is also auto-immune like PBC but not sure there if there'd be other antibodies present. A lot of liver conditions can cause itching.
Itching seems to vary between everyone but from what I can read about on tis site it does seem everyone has the same words to describe it. A lot say it feels like something creeping below the skin. For me I liken it to falling in stinging nettles or being attacked by wasps. For me my itch might be in one place but when I rub or scratch the area I can then start to feel it elsewhere. My theory is that the itch is something that comes from our bloodstream as it travels round the body. Thought to be due to used bile salts, they no longer can be adequately dealt with in our system so they leach out via the skin so the body can eliminate these as they are toxins.
I itch on my feet, mainly toes late at night. My legs below my knees and behind my knees where the leg bends is where I tend to feel prickles during the day and I also feel itchy on my arms to my elbow at times. But the itch isn't confined to certain areas for most and for me it is like this. My hands only tend to itch in the hot months I have noticed as the fingers swell a bit due to the heat like we are experiencing here in the UK at present.
Non Alcoholic Fatty Liver Disease (NAFLD) is something different to PBC but one with PBC can develop a fatty liver. This is why I think a diagnosis is best left to the medics. Not sure if one can have both PBC and NAFLD but one can have AIH (Auto-Immune Hepatitis) as well as PBC it seems.
Here in the UK we can suggest tests to our doctors but it is at their discretion if we are under our NHS (National Health Service). From experience the wheels of the NHS turn very slowly if you are a patient who hasn't got anything terminal or life threatening at the time. I know for a fact that when my GP received the results of my antibodies check back later 2010 from the date on the consultant's letter when I asked for a copy the day the GP told me I had PBC my GP had not thought it of any urgency whatsoever. His receptionist had rang me to inform me the GP wanted to see me and then she proceeded to tell me to go in for an appt only 6 days later. When I asked what medication she mentioned GP wanted to give me and she said ursodeoxycholic acid I knew straight away that I had PBC and didn't think waiting 6 days was good enough so my husband took over and we got an appt within the hour that day. Might not have stopped the itching as that as got better with time (I now only seem to itch from later at night until around 5/6a.m. now but given my LFTs drastically dropped in the 2mths I took urso at the start, for me I think urso would have been beneficial a bit sooner.
Don't assume anything until you have a liver biopsy. That is th most thorough and ultimate diagnostic test needed to firmly diagnose pbc.
There is a connection with fatty liver. Itching can be anywhere. If you are able to, since you live in Nashville, see a hepatologist. That is a liver specialist. Being nn symptomatic is great. Just go with the advice of your doctor and liver a great life
Here in the Uk it isn't necessary to have a liver biopsy to diagnose PBC if a patient has symptons (in my case itching and fatigue), abnormal and elevating LFTs and then a positive result for the AMAs. A biopsy would only be performed if a doctor has any doubts. I never underwent a biopsy to be informed I had PBC but had the AMAs proved negative or inconculsive then I expect that would have been the next step in my case.
I know in America that even if a patient has diagnosed PBC one is expected to have a biopsy as it is said for staging but I personally am not interested in staging of PBC. I think for a diganosis yes but not staging.
The liver being a large organ I am certain for other things liver-related might not necessary prove to be 100% accurate as the area where the biopsy ios undertaken is assessed and it isn't a full reflection of the whole liver.
I'm pretty confident myself that the bloods can tell a good picture and also ultrasounds and of course any new symptons that may occur over time in my case with PBC.
I think it would help us to advise you if you can find out exactly what they have tested you for, and exactly what the results are. I think it is important to know exactly what the diagnosis is based on.
If the various medics didn't tell you, in detail, then that is not very good practice. They should be certain that you understand. Also - I know it's difficult - you do need to start asking, and learning more about your condition. It's stressful, so work out your questions before, have them written down, take pen and paper for notes, and make the medics repeat until you understand - better still, take a good friend or relative, as they can do all this while you are still feeling shellshocked.
Many of us are diagnosed slightly differently and our diagnoses may be based on slightly different results, tests, investigations and reasons. One of the problems of PBC is that it can be so different for all of us, so you cannot assume that 'your' version of / experience of PBC is ours.
Same the other way round, my experience of PBC may not be yours ... so, unless I know more about your exact experience, it's hard to help, as what I have to say about my situation may have no relevance to you*.
I really think you should get in touch with the PBC Foundation (link at the top of this page) and read all the details about PBC in their advice folder. If you don't understand any of the points, make a note of them and then phone the advisors at the PBC F and talk to them. They are great. Colette (who founded the PBC F) saved my sanity when I first realised what the consultant had diagnosed me with.
Also, you do have a legal right to have a printed copy of everything that is said. Any letters that consultants etc send to your GP, they should send you a copy - although you may have to keep reminding each new one that you want your own copy sent. Also, you can ask your GP for a printed copy of any blood tests etc that they do. They may ask for a nominal charge, but mine don't.
* [EG if you tested +ve for AMAs (antimitochondrial anti bodies), you may want to know what sub-type of AMAs, you have (not all of them are as strongly indicative of PBC), and whether there was a high level of AMAs, or not]
I have PBC and NASH (which is a more serious Fatty liver). The question still remains how I have such a "fatty" liver when I'm not very over weight, and never been more them like 10 pounds off. During my research of pathology, inflammation can be seen. The location can be found but the cause of it maybe different then thought. Blood work, ultrasounds, MRIs and etc can tell the rest of the story.
But at the end of the day, I lost some weight and started URSO. Which has been going ok, it took some time for the GI track to normalize after the USRO. But all is well in the world.
Bilirubin Conjugated: 0.3 mg/dL (0.0-0.5)...the nurse said that the AMA would take a bit longer to receive....
I had an ultrasound this morning that noted my liver a has a homogeneous echotexture( ??) and that my gallbladder contains several gallstones measuring approximately 1 cm...other then that all normal....
Thank you so very much for everyone's words and wisdom..I will post when the AMA returns...
I had an ultrasound this morning that noted that my gallbladder contains several gallstones measuring approximately 1 cm...other then that all normal....
Did they say what homogeneous echotexture meant? Maybe someone on here can explain, or ask a separate question, as people don't always come back to old posts - I suggest a new post/question when you get the AMA results.
Don't forget to ask for your copies of all results, and with the AMA, if it is +ve, ask about the subtypes and the level of AMAs. Keep trying to learn more and ask more, and I really recommend contacting the PBC foundation and talking to them.
Oh yes the bloody itch!!!so much worse at night!!I tested positive to pbc in Feb although didn't get informed until may!!Yeh real good specialist he was.....I was so badly scratching and my skin is do scabby and scarred from this!sure does make u feel like crap,I know there is much worse illness out there but omg I wish the itch would stop permanently - I'm 34 with 3 kids and feel so miserable,good luck with yr tests
Hi Lee. Welcome to you. After I was diagnosed with PBC I got the dreaded itch, although I have had a liver transplant I got the itch back but we think we know the cause of it. Always ready to chat. Good luck.
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