Hi all. I was diagnosed with PBC 18 months ago. When I had my first consultation my liver function came in at over 1000. After my Dr took it upon himself to reduce my medication and my consultant putting it back to the correct level I reduced my count to 400. Still 4 times too much but 60 % better. Since diagnosis (like the rest of you I'm sure) I've cut back on the alcohol, watched what I eat, rarely eat processed food. Increased fruit and veg intake etc. I went back this week for 6 month review and despite doing all the above, losing over a stone and 10% of my body weight my liver function test showed a deterioration in my result with my count increasing to 438. My consultant said it could be the medication isn't working for me and whilst it works in 70 % of cases I might be in the 30% it doesn't. So needless to say I left disheartened with no other advice from my consultant. I have a couple of questions, firstly have any of you experienced a blip in your results to decrease again at later tests. And secondly have any of you found things like coconut oil, vitamin e,b,d, milk thistle or liver tonics helpful in managing your pbc and results at all? I look forward to hearing from you.
PBC and liver function tests: Hi all. I was... - PBC Foundation
PBC and liver function tests
Hi it's disheartening when you do everything you can and your test results come back.... let's just say, they don't measure up. Don't lose heart, there is still more you can do.
Google Dr. Burt Berkson. Read everything you can on his clinical trials. Watch his YouTube videos and take notes. Seriously.
Eat only liver Friendly Foods. Google those. Steer clear of alcohol completely and any foods that are not liver friendly. Google those too.
Watch your salt, as in steer clear of foods with too much sodium and never add salt to anything.
Watch fat intake. Do have olive oil, or coconut oils instead.
Get "Healing Autoimmune Disease" by Sandra Cabot MD & Marsha Jasinska ND
It's a great publication as is The LDN Book and The Alpha Lipoic Acid Breakthrough.
I know it's a lot. Take it in as you can, and remember that mainstream medical doctors are wonderful! But when they've done all they can, you gotta be in charge of your own health too. Knowledge is power. ❤
Thanks for the advice I shall get googling 
it definitely was a disheartening day at the hospital x
I know Fifibee .😔, I hate when that happens too. I get depressed and have a lot of anxiety when it happens. All of which makes matters worse. There is a plan B, and a Plan C... and others on here will pipe in soon and share some positive advice for you too. Allow yourself a "bit" of time to wrap your head around today's hospital experience, and then go on and up from there.... 👍
Hi.
Just curious if you are taking ALA? I came across Dr. Berkson and his ALA research, as I am newly diagnosed. I just wanted to see if you had any personal insight if it helps.
Thanks!
Can I message you privately? The chair on this forum doesn't like anyone sharing detailed unconventional remedies or therapies.
Yes please! Do you want my email address/phone #?
Please send me info on ALA. I am very interested.
Ask your doctor if he can put you on Ocaliva 5mg
I take milk thistle and also NAC
Fibi you really shouldn't drink alcohol at all. That will only cause them to raise.
To be honest I will have a glass of wine once in a blue moon. Hadn't had alcohol for at least 6 to 8 weeks before my bloods were done and then it was only 2 small glasses at a friend's birthday party.
Good girl. Just try not to have any. Little things add up where your health and liver are concerned.
My LFTs go up and down but my consultant isn't worried about it as Fibroscan results are good
My gastro doctor told me that Alk Phos can fluctuate, it goes up and down, it's normal. You should have fibroscan twice a year to monitor the liver. This will tell how you are doing. It may not be as bad as you think.
I have only ever had an ultra sound scan of my liver prior to my diagnosis. I will ask about a fibroscan although I think I'm now being booked in for a liver biopsy - something to look forward to. Its good to know that levels can fluctuate. Maybe I caught my consultant on a bad day and he wasn't very positive about things. He is writing to a professor in Birmingham about me to see if he would be interested in meeting me.
A big thank you for all your replies
I also had an appointment with my gastroenterologist. I am on Ocalive for a month now but quality of life has not improved with the new medication. I am on Stage one PBC. When I asked about alcohol then my doc said it's like adding fuel to the fire. Asked me to restrict it to only very important occasions like birthdays, anniversaries or holidays.
That's pretty much the only occasions I have a wine or a gin and tonic. My consultant is a man of few words and I need time to reflect on what he tells me so I am always left with questions after our meeting. I've spent a lot of time the past few days reading up on things which could help support my liver etc. I'm fortunate the only thing I really suffer with is the tiredness and occasional itching. But even my tiredness doesn't seem to be a patch on what others are dealing with. Can I ask what you've been given oculive for? As I only have the urso.
Mine tend to go up and down for no apparent reason! Have had it for over 10 years that I know of. Sometimes I am feeling good but my APL is high so just go with the flow as next time it may be low.
Yes, my doctor said that there would be fluctuations in the levels when testing. At this point, I'm higher than what is considered normal but not dramatically. I have my levels checked every three months. When I first started, at the first three month test, there was no change and I was kind of discouraged - that's when he said it. By six months, the levels had gone down, not dramatically but still down, so we figured the medicine is working. From what I can determine, all we will do now is just watch the liver function tests and if my levels stay almost normal, they assume my liver is holding its own. It seems a little vague but ...
I have a question for anyone. Many of you write of fibroscans. I'm in the US. I asked my doctor about a fibroscan (instead of having a liver biopsy) and was told that it hadn't been approved by the FDA and therefore was not available in the US. What exactly is it? Is it a ultrasound of some kind? What is involved?
I am in California and I had a procedure done instead of a biopsy. It was absolutely painless and took like 30 sec. I wish I could remember what it was called.
I know this is disheartening for sure. You mentioned the initial dose of Urso was incorrect. Make sure it's right now. 13-15mgs/kg of body weight. It is only based on body weight - never symptoms or lab results. Your first alk phos was 1000 then going down to 400. That is a huge improvement! Just try to be patient. Hope you will have labs drawn every 3-6 months. We all have fluctuations up and down. See what your numbers are next time. Look at the overall trend of your results. You can keep track of your results in the PBC app you can put on your phone. So much other great information on that was well. Some patients take a year or so to see improvement - you definitely have improved a great deal. Let us know what your results are next time. Regarding supplements like milk thistle, my hepatologist said it won't hurt anything but no proof it helps either. In my opinion, don't waste your money on liver tonics. You have no real idea where they come from or what's in them. Urso is best treatment by far. I know this is so hard..... we're all here for you.
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