Has anyone any experience of being tested for Hepatitis.
I was diagnosed over 10years ago with PBC recently because of the itch I have been trying to interact with the medical profession to try and get something to stop this crawling burning sensation which started a couple of years ago. Recently I paid to see a specialist as I could not cope any longer and the appointment to see him via the NHS was indeterminate. As part of his screening he has given me a blood request form for hepatitis chronic screen and I am curious as to why. Anyone of you lovely people out there got any ideas for me please?
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butterflyEi
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Yes, I was tested for hepatitis when I was in the process of being diagnosed. They mainly wanted to rule it out as a cause.
At first, they thought I "just" had fatty liver. For years the doctor brushed me off, saying that I just needed to lose weight. Finally, I switched doctors. I explained that I do my best to eat right and exercise despite my severe fatigue, but my weight is not really going down and my enzymes are still high.
The new doctor sent me to a specialist who took me seriously. He tested me for pretty much everything that could cause elevated liver enzymes. That included hepatitis screenings. (He also recommend Hep A&B vaccines). That's how he found my PBC. It wasn't "just" fatty liver. I started Urso and Vitamin D and now my diet and exercise is working. I lost 15 lbs and my bloodwork came back normal for the forst time in years.
I had the hepatitis vaccines when I was working in a medical environment a few years prior to itching. I had a course over 6 months. Then I had a blood check after to check immunity. I am convinced it was these that might have caused the PBC to start.I know my last hepatitis vaccine was a combined one.
I was checked for hepatitis in early days long before being diagnosed with PBC. All mine came back negative.
Butterfly Ei. Yes I was also tested for Hepatitis in 2009 when they started with all the various tests. The itching I am living with for years. Some days it is bearable and sometimes it can really get the better of me. What gives a bit of relief for me, is to bath with some Epsom Salts, use no perfumed soaps and eat gluten free diet. Our bodies are not the same. I try and listen to my body and know I have to make the best of this incurable disease, and my liver enzyme readings are lowest ever, (still far from normal), so I know I must be doing something right. All the best
The itching is caused by cholesterol floating in your blood my doctor prescribed cholestyramine and it stopped the itch immediately as it binds to the cholesterol and helps remove it from our Bodies
Unfortunately the cholestyramine has not worked for me completely, the so called itch is better but not gone. I still have times when I could just cry but mostly now it is tolerable. I still wake with it in the early hours. ☺
I was informed that the itch is caused due to used bile salts in the blood stream. They cannot be dealt with as they were pre-PBC so they leech out through the skin as a secondary safeguard as they are toxic. In a way though the itch is due to this, it is still an annoying thing to have. There are the odd times I feel so irritated with it.
I've not asked for anything as yet as for me I'd have to get to a desperate stage. I've never been happy taking the urso though I do and I just don't want to deal with any side-effects from additional medications.
I read something similar that the itch is caused by cholesterol and also bile salts that have built up in the inflamed liver and cannot escape through the blocked ducts so it leaks out elsewhere all I know is I take the cholestyramine Andy itching completely stood within an hour so for whatever reason it seems to work for most folks who don't have some other underlying cause for itch
So there are more than one theory out there but what matters most is many experience relief from the Orange flavored powder which is mixed with water and drank and it lowers cholesterol do that's a good thing
I guess it figures that the itch is widespread throughout the body if used bile salts are circulating in the bloodstream. My theory we get the itch sensation due to these salts reacting with all the tiny nerve endings.
At this stage I am not really sure I care what is causing it but I sure as **** want it to stop. Apologies group for my swearing but cholestyramine is only in part working for me, two and a half years of being put on something else or put off and now the doctor is writing to the specialist, heaven only knows how long that answer will take. This level of the so called "itch" makes me very very down.
I am never sure whether it is all PBC, my nails are not strong, my skin is dryer than it used to be and my hair is thinner than it was but then I also have to take age into account.
Hi - I was diagnosed with PBC in April of this year. Last week I was also diagnosed with Autoimmune Hepatitis.
the itching I was getting was from the PBC and the URSO eventually took care of most of it (id say about 25% of the itching is still there). Even with taking hte URSO and reacting really well to it I was still super tired. that was because of the Autoimmune Hepatitis.
It was seen on my liver biopsy when I was diagnosed with PBC but my dr was hoping that it would go down - but it didn't.
Have you had a biopsy at all? One of the liver numbers on the blood tests is what is telling my dr that it's not getting better and that it was time to put me on Prednisone. It wasn't a specific hepatitis test (although it was seen in the biopsy maybe that's why she didn't need that other test). I think it is the Alkaline Phosphotase number but I can't remember exactly.
My biopsy was about 10 years ago. It is only now that this new specialist is looking for a blood screen of Hepatitis-Chronic Screen. Not sure why after all this time that this is being checked. I guess I am going to have to wait until I see him to ask why.
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p.b.c
Liver biopsy
Newly diagnosed I have many questions.
primary biliary cirrhosis/ autoimmune hepatitis lapover syndrome 
