So, got my biopsy results back. Liver specialist Dr. called me himself. No PBC. (What?) However, I do have fatty liver disease. I didn't know how to respond. For 2 1/2 months I've been stressed out about this PBC diagnosis. Been on PBC diet etc. Yet my blood work markers (according to my "GI" doctor) say I have PBC. In fact, she was so sure I have it, she put me on URSO for 3 weeks over a month ago, but I got soooo sick on it AND it made my Liver enzymes skyrocket so she took me off until my biopsy came back. That was today. The Liver specialist is having me follow back up with her, my GI. However, I don't see her until Monday. I'm confused. Can fatty liver disease cause the same enzymes that are markers for PBC be elavated too? Or, do I have PBC along with fatty liver and PBC is only showing up in blood work at this point? Anyone else had this experience? Am I at zero stage PBC but eventually I will have it? Just confused and wanted some feed back before Monday. Thanks.
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Ktltel
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🙄 confused . com wee call that hear lol hope your ok and keep chin up wait till Monday see what they say no point in panicking the body is amazingly interesting so it could all change when you see docs again . by the way your so pretty and don't look your age so go you xx
Sylvia1968, You are kind. My husband took that picture when we got home. That's my "chair" I melt into for too many hours! No energy. So I'm having insomnia.... It's 2:45 a.m. here and I think anxiety has got hold of me. I can't sleep and my mind is racing. Been reading all about fatty liver disease. I'm coming to realize that I have "both" PBC AND fatty liver disease. Both carry similar symptoms, both require strict diet. I read that the Mediterranean diet is good for PBC and Fatty liver disease. But, you are right... Just have to wait and see what they say on Monday. Keep you posted.
(Excellence Hair Dye by L'oreal HELPS) I turn 58 in May. I'd be all grey without it! 😲
Looking fab mrs 🖒 all be 49 on February but really only 12 as am a leap year baby lol 😉 thats ma story and sticking to it lol its 9.15 am hear jst up and my partner and grandson is still asleep av got most my energy in morning then deflate later in afternoons so only time a can do things a work in mornings but weekend off yeha read something soothing try not to read to much on pbc ano av did it and to scary so mabe wee should stop reading so much and moving to the med sounds fab to me meet you there lol a wish 😊😁 get some sleep xx
Hi mrs my daughter just told me about a book that look really good called curing cortney the womans daught has pbc n cured her so think all be ordering it xx
Dr Sandra Cabot, the Aussie liver doctor as she is known- has an excellent diet in her books. I've tried it and it bought my liver enzymes back to normal. I only found out I had PBC when I came off the diet and my enzymes went up again - which kind of proves to me 'you are what you eat'. Her books give you good insight to all liver conditions and I wouldn't be without it!
Well if you look on 'liverdoctor.com you can see a whole range of her books, and specific articles on whatever you want. Also when on her diet I wrote to her several times and she answered me. She is on utube as well. Just search Sandra Cabot liver diet on Amazon- I've lent out my book and can't remember the exact name of it - you won't regret it - big hug kandiepat
Great, I'm so into that at the moment. I have the book and I'm off gluten,dairy and sugar. My brain fog and blurry eyes cleared in two days. It is daunting but take your time, digest the book and see what you need to do, kandiepat
I went off gluten, sugar and salt over 3 months ago. Since I was diagnosed with PBC. I've lost 44 lbs. I have it to lose. 😔 Anyway, right now I'm on an anti-inflammatory diet. PBC is showing up in my blood work, but my biopsy didn't find anything and so far my bile ducts look unremarkable. My doctors are perplexed and for now I'm not on URSO. I get my blood work done about every 3 weeks.
Hi Ktltel, thats odd - maybe you just have a fatty liver, that causes all sorts of problems. Sounds as if you were quite overweight and so what your doing is all good and will stand you in good sted whatever they eventually find. Hope it all turns out well for you. big hug Kandiepat
Hi, Stress is the last thing you need so try to be a bit more relaxed, easy to say I know but it doe's help. PBC to me just meant a few changes in my life style and diet . Apart from that I just plod along and really don't feel any different. Stay positive and don't worry about problems that may not be there, tackle things as they happen, this disease affects people in different ways. Good luck.
Hello Ktltel.
As I understand it normally a biopsy can diagnose PBC and one is normally performed if there is any doubt as to a diagnosis. I didn't have a biopsy as I was itching intensely back in 2010 and did have fatigue at the time. Was found to have higher than normal range liver function test and GGT and over the 9 months it took for me to receive a diagnosis, they were climbing. I was then found to have what was said 'high titre' of antibodies AMAs.
There is a liver condition known as NAFLD (Non-alcoholic fatty liver disease) and that can be controlled by diet. Check out the British Liver Trust website, they have a leaflet on it as well as all the other liver conditions.
Urso was apparently originally marketed for cholesterol-formed gallstones but then it was found to be of some help with PBC. As far as I know it's not generally used for other issues though it can be prescribed short-term for cholestatis in pregnancy.
I once filled out an online survey with the British Liver Trust and when I entered I'd PBC it came up with stages and in simplified terminology fatty liver was one of them but I've not had this verified as never bothered to ask about it.
Only your consultant would perhaps be able to give you a better understanding. I think the antibodies are a bit more complex but these days, one can be diagnosed with PBC if they have the criteria and then found to have a certain measure of the specific antibodies. I did think that with biopsy liver cells throughout can show PBC but there has been some doubt regarding staging of PBC through biopsy due to the size of the liver and the biopsy site.
A positive antimitochondrial antibody blood test diagnoses pbc along with biopsy/MRI exam. Elevated aph, sat and atl are mark liver damage. That's my understanding. Someone please correct me if I'm wrong. I wish I were.
Maybe your biopsy shows zero cirrhosis and not zero PBC.
My first biopsy showed zero cirrhosis 18 years ago. 8 years ago my biopsy showed stage 2-3 pbc. Last year MRI (my hepatologist GI pbc specialist doesn't do biopsys anymore) showed stage 2 pbc.
I'm asymptomatic. I stopped excessive alcohol consumption, meat eating, fats consumption., did yoga every day and took early retirement. My aph, ast and atl decreased to only a few units above top of normal range.
I didn't know Urso could raise enzymes aph, ast and atl. Did your enzymes go to normal when you stoped taking Ursodyoxycholine? My weight decreased by 8 lbs consistently in the past year so PCB specialist reduced urso script to 1 tablet in am and 2 tablets at night. I was taking 2 tablets am and pm, 250 mg per tablet. I'm hoping this will bring my enzymes to normal along with having only 4 oz alcohol per week. Keep us updated on your GI apt results! What pbc diet did you follow?
Yes, jlruggie, my AMA and ALP are elevated. Not sure the numbers.... As far as the URSO goes, all I know Is after being on it for about 3 weeks, my doctor called me a day after I had blood work was done. She told me to stop the URSO, my liver numbers we're very high now, and they we're only slightly elevated before URSO. My MRI didn't reveal anything significant they said. There was an unidentified 1 cm mass they could see in my main bile duct...but they said it could be a stone, scar tissue from when my gallbladder was removed, or a mass. So, they did an ERCP and Liver biopsy at the same time. The 1cm mass proved to be nonexistent. Nothing there. Go figure. The biopsy he said showed NAFLD or fatty liver disease. I said "What about the PBC? " His exact words we're... "No PBC." I couldn't believe it and still don't. But I failed to ask questions as I was driving when I got the call. I want to know why my AMA and ALP are elevated? Also, how bad is the fatty Liver? Anything else I need to ask? I mean, a year from now I don't want to be told I'm stage 3 etc. Anyway, my appt. is early Monday. I'm taping our conversation with the doctor. My husband is going with me.
That's interesting. Do you mean anti mitochondrial antibody by AMA? Was your anti mitochondrial antibody test positive? I think its a "titer" test and can only be positive or negative. If it's positive, you have PCB and doc will want to confirm it with biopsy/mri exam. Do you mean alkaline phosphatase by ALP? In either case do you have a Hepatologist that specializes in PCB?
It's a good idea to tape conversation with GI doctor, but definitely bring a list of written questions, and write your answers down so doc can see your written notes. It's fine to bring a support person but I've found as much as they care, it isn't happening to them. They aren't going to get your PCB or what ever is wrong, under control, you are.
I've been on Urso 20 years, just reduced dose by 1 tablet due to my weight loss. I'm hoping my enzymes go normal. My enzymes were 2-3x higher than the top of the normal range a year ago. Now enzymes are still high but only a few points over normal range.
Ask you doc for a definitive answer to whether you are positive for Antimitochondrial antibody. Ask for a referral to a hematologist too.
Yes... On your questions about my abbreviations. Those are the enzymes I meant. And yes, my AMA was elavated... As well as the alk-phos too. (ALP). I will be seeing a Liver specialist (hepatologist) ?Feb. 2nd. What stage are you? How are you feeling?
I went from stage 2-3 to stage 2 this past year. I just got back from India last week studying yoga and going to work in Delhi with my cousin. I have the flu right now so I don't feel so hot. Otherwise I'm essentially symptomatic. About one day every week I feel so tires in the afternoon I have to nap😴 I only work 6 hours per week tho. I have los of energy.
Sorry, jlruggie, yes...once I stopped the URSO, my horrid nausea left and my liver enzymes went back to slightly ekavated.... Wish I knew the numbers.... But I'm just repeating what my doctor told me. Never actually wrote the numbers down.
Ask if you can get on a portal to communicate with your doctors and to view your test results. At University of Penn Medicine in PA I can email any of my doctors and view my test results at any time. Doctors usually respond to my questions within a day. I can see my test results in a graph over time and see upcoming apts. which is very helpful.
Mondays appt was confusing. Elevated aph, elevated ama... Etc...but biopsy report showed no PBC in Liver and bile ducts looked unremarkable, report said I have mild fatty liver and they found 2 small "abscesses" in my biopsy that they said was nothing to worry about. (What?) My white cell count was normal, my thyroid low end of normal. I have fatigue most days. Still, they didn't put me on URSO. Not at this point they said. I'm sticking to my anti-inflammatory diet as well as the PBC recommendations for diet. No copper foods, also no dairy and no more than 70mg of lean proteins a day as well as low sodium. Pbcers.org/support/meals
I think that's the link I found some diet tips for PBC.
Just re read your message. Thanks for Pbcers.org/support/meals site for diet, very helpful even though it's for late stage pbc. Makes sense to me to eat that way now more than not since I'm in stage 2 pbc and was in stage 2-3, just 1-2 stages from late stage pbc.
What does a non inflammatory diet include and exclude?
It would be helpful to my understanding of pbc and my treatment if I knew why your dr isn't diagnosing you with PBC if your AMA (if that stands for antimitochondrial antibody) and aph (alkaline phosphase) are high. If you are on pbc blog site, you'd be more likely than not to have pbc.
I can't help wondering if your biopsy was negative for biliary port damage and you heard that biopsy is negative for PBC.
My biopsy results stated 17 years ago, no biliary port damage, no cirrhosis. My GI prescribed ursodyoxicholine to prevent biliary port deteriorization, obstruction and cirrhosis.
Dear Ktitel before I email my hepatologist to ask, would you confirm that when you say your AMA was high you meant your antimitochondrial antibody was high?
Yes that's exactly what I mean by AMA. Also Alk-phos too. Both elavated. They are not putting me on URSO. Worries me. She said my fattly liver could raise my alk-phos too. But they are perplexed about my raised AMA. It's like they are "wait and see" right now. My next appt is Feb. 8th with a hepatologist. Hopefully get more answers then. About the anti- inflammatory diet, It's been proven that inflammation in the body causes a chain reaction that leads to illness and autoimmune. exacerbation. So I am trying the Mediterranean diet for now. The paleo diet seemed much harder and more restrictive. You can Google inflammatory foods and just steer clear of those. Also I tweeked the Mediterranean diet because olives are salty pickles are salty so while I'm trying out the anti-inflammatory diet, I'm also merging my PBC diet restrictions too. I'm just weighing on the side of caution when it comes to diet. Also seeing a new naturopath Friday. The old one asked questions, which is perfectly fine, but then piled on the supplements ($$$$) without really pinpointing specific problems. My new naturopath asked me to bring my blood work results. I just like that line of thinking better. Keep you posted. ❤
You are doing a good job taking care of your body w the info you have sounds like. Way to go. Ask your hepatologist if there is an associate that specializes in pbc and if ther are other diseases associated with elevated AMA. I'm writing to my pbc specialist and will post what I learn. I also asked about low dose naltrexone and will post about how she responds. Thanks again for diet info.
Sooo cold in southeast pa, 22 degrees. I bet folks in upstate new York and Vermont would say 22 is balmy!
Great if results conclusively show you don't have pbc! If antimitochondrial antibody is negative and doc says you don't have it, great! Now fatty liver is another story I know nothing about. Do what doc says and research what more you can do with diet. I've found going to a yoga class is great when you have no energy because its so based on breathing and is slow. You can just lay there if you want Keep us posted about your energy level.
I was thinking of you Sylvia1968. I'm better. But been having lymph nodes poo up around my neck. Caused me major anxiety. Sonagram revealed nothing cancerous. Keeping an eye on them (4). Also, I may have told you, my biopsy came back negative for PBC but labs say PBC. So for now no URSO.... No nothing. Scary, cause I'm fatigued but no itching. Biopsy did show 2 small microabcesses... Infection? They don't know. And also I do have mild fatty liver. So, went to a new naturopath closer to home. Dr. Khosh. Love him. He was so much more thorough, asked for copies of my most recent labs. Did a quick physical exam too. He told me not to stress about the swollen lymph nodes. Could be many things. He put me on 3 supplements.
1.By designs for health, GI-Revive
This is to coat my stomach for healing. I originally had gastritis and do have leaky gut.
2. By Ancient Formulas, SUPERADRENAL
This is for my fatigue. I felt this working the first day.
3:By Intergrative Therapeutics,
LIPOTROPIC COMPLEX
Dr. Khosh said this was the most important one. This says on the bottle, Comprehensive Liver Support.
There you have it. I have other things going on... But he's concentrating on my gut and especially my liver. 👍
Thats me jst read it there am with nhs which rnt ever in a hurry with things as uv probably heard thats 3 wks on Wednesday a had ma bloods done 😲 now a nd to phn docs cause am taking palpitations with all this going on felt my heart was going to beat through my rib cage and a was starting to feel better about it all but now this carry on and xmas very tired and took skin of my left arm with itching it looks terrible 😢 but all see if a can see docs this week n see what he says its all i can do at present xx
Awe. It's very stressful!! It will get better!! What you're going through is the hard part. It's because of the holiday that it's taking so long probably. Please keep me posted. ❤
I don’t know if I’m writing to proper post I was told I have PBC but they can’t say it relates to the “wishing I was dead” pain I feel every night in my shoulders . Well I type in shoulder pain and PBC , well my phone almost exploded!! People describing my pain to a t, , that took 5 min on google , and I didn’t go to Med school and I don’t drive a Mercedes, I drive a dodge and work hard with my arms , but bedtime is hell and nobody is offering help or telling me what stage or what I should stay away from
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