I saw a consultant today as was told my bloods flagged for an autoimmune disease marker which I now know to be AMA positive, I only know this as all the urgent blood test forms I have for Tommorrow state I tested positive for this. i have looked up all the blood tests and most are liver related.
I also have a liver scan on Friday and waiting on a call to book in for MRI.
Obviously I have googled and got myself into right state., I have 2 little children and can't stop crying.
I went doctors as keep getting night sweats, thought it was maybe pre menopause and this is how it got flagged.
Anyone with any kind words or advice I would much appreciate.
Thank you
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Kelpop1
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I’m so sorry to hear that. I was in the same predicament two months ago when I first tested positive for autoimmune. My doctor scheduled me for an ultrasound and that came out negative, but due to my positive ANA and Smooth Muscle results they persisted and ordered a Fibroscan. The Fibroscan results indicated I was at stage-4 fibrosis (advanced cirrhosis). It has been a miserable two months. After doing research on Google I was literally calling my family and planning my early retirement and planning my funeral. I joined Living with Fatty Liver forum and the was the best thing I’ve done. The members have a lot of information and support. I just found out today after a biopsy that the original diagnosis was incorrect. I don’t have an autoimmune disease attacking my liver as the doctors thought and I have stage-3 fibrosis not yet cirrhosis. My point is that the tests are not always accurate. I know that I have a long way to go to good health, but I can see the future now and will continue working on getting my liver back to normal. I’ve following a a liver friendly diet(that I got from the forum) and exercise almost daily. During this waiting for testing and doctors appointments I learned that there’s a medicine that can put autoimmune into remission and fibrosis is reversible with diet and exercise. It doesn’t sound like you have any other symptoms for liver fibrosis. Don’t worry, wait for the doctors to perform all the tests. I had to have a biopsy of the liver. That’s the only way they can tell for sure if you have AIH. You might want to look into that. Good luck.
I think we have all been where you are and know what you are feeling .......12 years ago I went to my GP because I had a pain in my side everytime I ate . He sent me for an Ultra sound and called me back when he had the results .
I can remember that day exactly , he just told me I had PBC and was refering me to a Consultant , he handed me print outs about PBC and as I glanced at them the words LIVER TRANSPLANT jumped out at me . I went home and was completely in shock .
Luckily when I got to see the Consultant he was wonderful and explained everything .
I would say ...don't go googling too many sites , countries have different treatments and thoughts on PBC
All I can say to you is , I'm still here 12 years later , living my life to the full , walking at least 5 miles a day and my only symptom is still the pain in my side as I eat.
I now have blood tests once a year , an ultra sound and a fibro scan , ( you will most probably have blood tests every 6 months ) You will have to take Urso ( I still don't take the full amount as it upsets my stomach).
My advice to you ...try not to worry , you will get used to it , and live your life to the full .
While it is hard not to worry…there is nothing to worry about until they run all the tests.
If you have pbc, you likely caught it early and with meds like urso (granted you respond to it), chances are you will be fine in the long run. While pbc is not curable, meds and clean eating will slow down its progression.
In fact my liver specialist says that pbc patients whose conditions are well managed have the same life expectancy as the general population. Don’t stress and find a good liver specialist to take care of you and guide you through what is medically needed.
I was diagnosed with PBC in 2021 and immediately started Ursodiol. My numbers went back to normal and other than some fatigue and weight loss, I don’t have any other symptoms. People can live a long and normal life, you just have to take it one day at a time. Hoping for the best for you!
Take a deep breath, read all your replies and you’ll realise a lot of us ,if not all of us were where you are today. For me it was 14 years ago my consultant at the time gave me a piece of paper with the PBC foundation details on it and said give them a call he never said any more other than you’ll live with PBC, not die from it. I went home and googled!! Wrong move, I ended up scared to death and everything I read was out dated at best and most of it was blatant scare tactics. I then called the foundation and never looked back. I still function today as I did back then so give the foundation a call and get the correct info you need , you’ll feel much better for it.
I have had PBC for 15 years and have never had any problems. I know I am lucky but don't get too worried. I am stage 2/3 and it has never progressed since taking URSO. Hope this gives you some hope x
thank you everyone, for your kind words and advice x
I just went and had all the other liver tests this morning, they marked as urgent so hopefully will get them back asap. Still very upset of the unknown but I guess I just have to wait now.
I was diagnosed in 2006, I take my medication and continue to look forward to the future. Once you have your diagnosis and have been taking URSOdeoxycholic Acid for 6 to 12 months your numbers will start to normalise. If they don't there is now alternative medication available. If you have symptoms such as fatigue or itch in the future there is lots of good advice to help manage. As to your night sweats maybe HRT patches or something similar might help. Always ask for a copy of your blood tests so that you can see how URSO helps to normalise your numbers.
The PBC Foundation has leaflets for you and also for children which may help explain PBC to them when you are ready to share. The PBC Foundation also run a Q&A session with specialists most Thursdays at 2p.m. on Facebook, you can scroll through on their FB page or go to the YouTube channel where you will find good information. Google has a lot of old information so it is not the best place to look.
The PBC Foundation's web site is being upgraded just now but still working here is the link:
I just got call this morning abs have MRI this afternoon and managed to change my liver scan for this afternoon also, plus did all my liver bloods this morning. So hopefully will have some idea soon.
usually they wait for the radiologist doctor to read it and the technician administering the test is not supposed to tell you anything since they are not doctors. That is my experience with sonograms. On the other hand, my liver doctor does my fibroscan in his office. His registered nurse does the scan and my doctor will come in right after she is done and review it with me.
hi! I know you are scared! We all were!! You will be put on urso and that slows down an already slow progressing autoimmune disease. I was diagnosed stage 0-1 in 2016 and still am stage 0-1! Don’t look up stuff on google! Go to Pbc.org!
I think many people on here will reassure you that even if you do have PBC you can live a long and healthy life. Many of us have had PBC for years. When you are diagnosed highly recommend Professor Jones Definitive Guide on PBC, you can find on Amazon. Good luck.
it’s easier said than done but try not to stress or worry. The last thing you wanna do is get a second auto immune disorder on top of this. Many years after I was diagnosed with PBC(at age34) I was also diagnosed with AIH. AIH is far worse and both diagnoses happened after major stressful events in my life. Still to this day if I get stress or worry too much my side swells. I was never able to get my lab levels down to normal with just urso. When the AIH started, they also put me on a major dose of steroids and an immune suppressant drug. That’s when things really went downhill. I finally got off the prednisone after three years we are slowly reducing my immune suppressant drug. The side effects from immune suppressant medication is way worse than Urso. The good news is I recently started fenofibrate and my labs literally dropped in half and three weeks. They have been normal for the first time since I was diagnosed with PBC. Obviously, every medication works differently for each individual. Just try not to stress out but I am a strong believer it’s also OK to let your kids see you cry and it’s OK to ask for their help. At this point I am 47 and my kids are now 18 and 20. I do need a lot of extra help as I get very fatigued in the evenings. The side effects come and go. I’ve had them all. So just give yourself a break when you need a break and don’t be afraid to ask for help. Also stay on top of keeping your kids tested. I am not sure what medical research says about the probability of this being passed on to children but apparently if you have a female sibling, they are very likely to get PBC as well. My 50 year old sister was just diagnosed. There are good times and bad times but if you take your medication and go by the 80/20 rule (be good to your body 80% of the time but also allow yourself to have fun and not worry about everything you put into your body and everything you do the other 20% of the time). I have found that sometimes it is really helpful to feel like I’m a normal person and indulge in things I know I shouldn’t. But it is fun to let loose and have indulgent foods or drinks from time to time. Sometimes that can be way more helpful than always doing the right thing. I don’t know how old your kids are. But obviously it goes without being said to use your judgment on what to share and when. Just remember, most people die with PBC not because of it. It’s a part of you, but it shouldn’t define you. You are gonna do great!
Life is stressful at the moment, I have a 3yr, 5yr old and an 18yr old as well having my daughters 18yr old friend living with us who has had a lot of stress in her life, work full time so life is constantly hectic for sure.
This has made me feel alot better thank you so much.
Hi K, my Mum was diagnosed in her 50s with PBC before treatments were available and was told she had 2 years. She lived over 20 and saw her granddaughter graduate. I’ve got it plus AIH but I’m doing fine. I just have to pace myself. You’ve got a lot going on, you might just have to prioritise yourself for a while and get your 18 year old and her friend to help out with the younger ones and the housework while your getting answers and possibly adjusting to a diagnosis. It could all be a false alarm.
I remember that initial feeling well. It was October 1995 for me, I was 37yrs old and a single mom of six kids. I thought for sure I was going to die!! Thankfully I had an awesome Dr. Long story short, I went about my life w/the meds and testing. Sometimes I couldn't afford the meds, so there were times I went without. In 2011 it started to progress; I was dx at stage 3 in 1995. I had different issues, varices banding for internal bleeding, etc. I was put on a transplant list in 2018 and taken off the same year. I was end stage liver disease. Thankfully, my nurse suggested I look at other options or I would end up in a hospital and probably die, so I phoned the Mayo Clinic in Phoenix, AZ. That was October 1st. They accepted me for and evaluation which included a weeks of testing and interviews, they told me I wouldn't make it through the year. By the time I flew home, I found out they accepted me and put me on the waiting list. Praise God!!! It is truly only because of His grace and mercy I was able to do this. When I first started I wasn't sure how we could afford it all. Then I phoned my insurance to see if a 2nd opinion would be covered, out of state. It was and then they told me I had a travel benefit!!! They paid for out plane tickets and hotel, although I had family there, the hotel was right next to the clinics and we could use the shuttle. I came home for two weeks and they wanted me back so I would be close in case a liver became available. I stayed w/my wonderful sister, who was my caregiver since my husband couldn't just take off work indefinitely. Six weeks later I got the call, and again by the grace of God, I received my transplant March 19, 2019. All my doctors said it couldn't have gone more perfect. Even the three weeks of clinic follow up after surgery. I was really sick for about 2yrs before my transplant, I couldn't drive, or barely walk. I was gray looking and very bloated and swollen. I would get very sad and depressed, but I just kept praying and had many people also praying for me and encouraging me. So NEVER NEVER lose hope, God is almighty and He is right beside you through all the struggles. My prayers are with you.
So glad you are ok and well now xxx thank you for sharing x really do appreciate each and every person that has take the time to share and had given advice and support x
I'm desperately waiting to hear back on my blood results which I know the consultant has! His secretary did pass onto him today that I'm really anxious so hopes he would call today but understand he is busy so hope for Tommorrow.
I'm out in London for bday celebrations tommorrow which would usually be very alcohol fuelled! But despite the ultrasound saying liver looks healthy I am very wary obviously!
Dear Kelpop, If the scan results were positive that is really good news. It is unlikely anything has progressed too far and then can be controlled with medication. So try not to worry.
From what I understand at least 60% of people respond to the main medication, ursodeoxycholic acid. Although I was a non-responder to Urso I subsequently had microbiome testing and supplements added in by a naturopath who works in the same clinic as my liver specialist and all my liver results normalised and have stayed that way since. I did have a return of fatigue and some cognitive issues in about May this year. The liver specialist then put me on obeticholic acid and after 3 weeks the cognitive symptoms and fatigue started to disappear. Now I feel the best I’ve felt in a long time. I feel close to normal and just get a bit of a stitch-like feeling in the liver area. I still try not to overdo things so fatigue doesn’t come back, but so far so good.
So basically trying to say that if your scan results are good and you start medication, you will most likely be fine. You may get some of the symptoms that come up (itching, fatigue etc) but treatments keep being developed and new research happening. So know there is hope.
I am where you are to the day almost exactly. First AMA results came in Wednesday last week and my GP just told me to Google it while he referred me for a biopsy. I get the feeling I may be the first case he’s had - he called me interesting and was almost giddy with enthusiasm!
Suffice to say I terrified myself. The progressive thing is what got me. In the last 20 months I had my gallbladder out, 2 ultrasounds, an endoscopy and an MRI and all the while the LFTs were off as they kept trying to find the reason. Finally the GP ordered more detailed bloods and here I am.
I panicked about the delay and after research and, because like you I was anxious, I self referred and forked out for a quick fibroscan on Friday. The nurse doing the scan told me I had no scarring and no fatty liver, which is also what I got from the abdominal MRI I had in February. They kept telling me there was no sign of any problems with my liver and couldn’t understand why the levels were high.
Oddly enough this helped the panicked sleepless nights because at least I know the waiting hasn’t made it noticeably worse. I also found the PBC foundation and this forum and have spent the last few days lurking and reading voraciously. The advice on here has been invaluable.
Like you I am waiting for results. The liver specialist on Tuesday (from fibroscan) and the gastroenterologist referral next Friday. It’s really the waiting that is so hard isn’t it? Once there’s confirmation and the right meds are doing their thing, it will all feel more in control and it always better when you are doing something proactive to help yourself even if it’s just taking the tablets!
It’s only days, and we will have answers, and in the meantime we have proof we are doing ok. A couple of days here and there are not going to make a difference. And on the bright side, all these cheerful, positive people here are doing so well which means, most importantly, we are not alone.
Yes this has been really helpful and everyone so nice and reassuring.
Sorry to hear you also at same point as me. I am a born worrier but have had a good weekend and feel a bit more reassured from the kind people on here .
Would love to know how you get on and I'll come back and share as soon as I have any results x
Thinking of everyone else also going through same right now x
Hi I just wanted to tell life with PBC is not that bad once your blood stabilises with URSODEOXYCHOLIC and even if that doesn’t work there are other medications and live your life as normal well as normal as be can be , I had adjustments at work went to part-time and the only thing is the fatigue, if I have done to much , I need to napI hope you get well soon , I know it’s a shock but there are developments in the medication all the time.
Whenever I read a post from someone who has just been diagnosed with PBC I wish I could ring them myself to assure them that this is not the end of the world. Nor do I scroll down to see what others have written because collectively we’ve got this!
You will see your children grow up and you will become a grandmother!!
Well obviously there are other factors to your destiny but PBC will for the most part is an autoimmune disease that can be managed. If you are diagnosed with it ie. and there is a wonderful low toxicity drug available that works for most of us that calms everything down and i it is almost like a remission if you will and you will get through this and you will be okay.
Stay off google, your human - but let the specialists manage this and you - not google. I did that and scared myself silly and none of the extreme outcomes of PBC came to fruition and here I am 15 years later well writing to you. I’m 73 and next week I’m off by my own to India ( my annual me, myself and Toni pilgrimage) to do yoga and hang out regards where my life is and long may it last.
Be calm and just follow the advice. In years to come you will be me writing to someone just diagnosed! 😂 by then it will hopefully have a cure who knows!! ❤️
It’s horrible to have any diagnosis. I’ve had PBC for about 5 years. I had a horrible itch. Now take URSO and I’m absolutely fine. No progression, no itch. All is good. Keep your chin up - normal life expectancy.
End of the week which is another week closer to answers! How’s it going? Are you more settled?
I have had my fibro back and had another blood test, for IgM, which is as much progress as I have made in those 7 days. I am in with the GP for those results middle of next week so back to waiting again. I am hopeful this is the definite yes/no.
I have accepted that there is nothing I need to do urgently, and other than peace of mind, knowing isn’t going to change anything. In the meantime I have been overhauling the kitchen and researching liver friendly eating to try and support my system as much as possible and that gives me the satisfaction of improving my general health and being kind to myself. It FEELS like I am being proactive!
Hi, still not heard anything! My GP won't give results as they go straight to hospital, I had a letter from consultant but it was just a summary of what we had spoke about, again no mention of PBC mentioned and it had my prior blood results on it which caused the refferal in 1st place, which made no mention of AMA positive just barely ANA positive at 1:40, but yet on the urgent bloods I had it said AMA positive patient! So I've just been living life normally to be fair. Had quite a few celebrations where I have had alcohol as feel like I'm in limbo right now so just going to expect the worst and hope for the best x
I got confirmation today with the GP who was great and has referred me to my chosen specialist. I did a lot of research into who I wanted to go with after being put off by the first consultant I was assigned (I cancelled) and will now be seen by someone I can see myself going to long term - and let’s face it, this will be long term!
I am not on the meds, or extra vitamins or anything yet, the GP has left it to the consultant to answer my questions about supplements, future check ups, DEXA scans and the Urso prescription, since the hepatologist is the expert! I am hoping to get the appointment in the next 2 weeks.
I am actually calmer now I know for sure what’s been going on.
Here’s hoping you are finding answers and getting closer to your zen with the whole business!
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