PBC Foundation
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symptoms

I get a recurring pain mostly feels like a dull ache, it occurs where my bra sits on my right side. I am wondering if liver pain can be felt this high up? When I have done ultrasound scans I remember the scan being more centered when looking at the liver this pain almost feels like its in my breast but not quite. Its sometimes a burning feeling sometimes a dull pain. I have said in past posts my AST is 50 my ALT 53 AND alp 113 so only a little bit elevated and no more testing has been ordered for me since my AMA and ANA came back negative. I feel stuck with this. I just dont know what it could be. I have been having tests on my liver since 2007 and everything has come back with no answers. I am very frustrated to continue to have this pain on my side and slightly elevated enzymes and after switching to a different dr hes not sure what it is either. I guess I just would like others opinions on what I should do next. I dont really want to switch drs again he has suggested its NASH but then said maybe not.

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My ache or slight twingy pain is just under right rib. Not sure what you might be feeling.

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I have the same pain. Has anyone figured out how is this pain triggered? I feel I get it when I do weights. What about you?

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I had a liver biopsy yesterday and that is where he took the sample from, I had to pull up my bra but the dressing is just where the wire sits , I have deep ache / tenderness their now which I assume is will go once liver recovers from the trauma . Hope you get some answers soon x

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I get that dull sore under my right breast. I thought it was my bra, it's there most of the time and it's sore to touch. I was diagnosed with pbc last year. It's not an agonising soreness and only annoys me when I'm lying on my right side. I don't get the itching or tiredness so I guess I can put up with this. My blood tests are similar to you mtk0925. I just take my urso and get on with it. Doctors are still learning. Try not to worry about every little thing. It may be our liver but what else can they do? Most of my aches and pains I put down to age ( I'm 63), I feel I would get them anyway whilst aging. Try to enjoy the time we have, it's not a bad prognosis considering .

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were your AMA and ANA positive because mine were negative.

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All I know is that figures were a lot higher than they should have been, I m only starting to learn about blood tests now. Sounds irresponsible but that's the fact. I'm due back to have blood test in January so I know what to ask now x

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thanks you have been helpful/ i am hoping to get answers. I am in my early 30s i am fit and i eat right I did drink alot in my college years and I worry I may have done irreversible damage to my liver. I have had ultrasounds but nothing was ever seen.

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Mine was a rib out. I could hardly lay on it without pain, but chiropractor fixed it yesterday. Great relief!

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I love your attitude! According to my doctor the pain beneath my last rib, near the front, under the breast is definitely liver pain for me. Thankfully it is rare now.

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I get yhe pain there also and in the middle at times too. I was told my spleen was swelled awhile back too. So, maybe that's why. GI Dr don't say much at all. I'm starting to get pain in my joints now

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trying not to worry about every little thing. its just hard when I havent been diagnosed with anything yet. I keep fearing the worse. But I am trying to stay optimistic. I am worried. But I do have to enjoy the life I have and what ever life expectancy I have left.

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Hi All, yes I get that ache but usually I can trace it back to something I ate or took.

Like turmeric, I can eat a curry but not take the tablets regularly - keep a note of what you eat and you may be able to pin it down.

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I get that ache as well; right where the bottom of my bra is. First opportunity to remove it, it comes off! I even buy them larger than my normal size since i can no longer stand wearing one. That does help believe it or not. So instead of a 36, buy a 38 for example...Good luck!

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I wonder if that’s liver or bra related I just talked to my dr about it he said where I’m showing him is too high for liver

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i believe it is liver related.. like the very top of the liver and any pressure on it makes it hurt! Sometimes I can't even sleep on left side because it hurts too!

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Ok.... I can’t hardly wear a bra because it hurts so bad and another weird pain is just for a few seconds when I eat fruit I get pain in right side but then does go away

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Have you been checked for stones? Gall bladder / bile duct stones?

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To the lady with the more-upper right upper quadrant pain and not-so-definitive enzyme results ...... you know, I think (this is soooo non-medical) that we actually "float" awhile before PBC is diagnosed. I know I had great itching of my lower legs for about two years prior to being diagnosed with it. Then I had the right upper quadrant pain (only have had it just prior to being diagnosed with PBC) in 2001 - never after being on Ursodiol through 2017.

This is just, again, my "non-medical" thinking: No gastro/hepa has ever confirmed this. I believe truly that we have "symptoms" way before we actually get diagnosed. Of course, it could be something else - I don't know a thing about, say, autoimmune hepatitis or any other liver disease. Maybe should not even post this. But I think some of us go along not knowing because we are "in limbo" and our bodies are trying to "make up their minds" about what we have! This sounds so silly, but it has, for many years, made sense to me. Kathleen in Ohio, 73 year old female with many co-autoimmune diseases; Stage 1 diag. in 2001 by biopsy, Stage 2 in 2011 by biopsy; Stage 3 diag. by Elastography in Sept. 2017.

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Were your liver enzymes elevated at all during those 2 years you had an itch? Had you already been tested for ama during those 2 years?

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Hi! Regarding "symptoms" and ELEVATED ENZYMES, IF ANY, during those two years I experienced great, great itching in lower legs but had never been told I had PBC - - - actually, NO - NO ELEVATED LIVER ENZYMES! This might give you a tiny clue!

And - I had plenty, plenty occasions to find out if I had elevated liver enzymes because I was going through 7 years of a bad gallbladder - in and out of hospitals for rehydration, pain like you wouldn't believe it, and my doctors did not want to take it out! Because during all of those scans for the gallbladder, no stones were evident! These stones "hide" in the folds of our abdominal area, though, and they were too conservative, for my liking, actually. And I had an absolutely marvelous primary care physician (an internist) and a gastroenterologist at the time for IBS and GERD. Finally, the primary said, "You've gone through waaaaay too much pain and suffering, and I'm going to get you to a surgeon, and I'm having him take it out right now". Sure enough - they found one stone left, and evidences of others. Again, these stones literally "hide". Thus seven (7) years of scans, enzyme checks of both pancreas and liver).

IMMEDIATELY AFTER GALLBLADDER SURGERY, I went in to five (5) straight years of chronic pancreatitis - I did not drink - quit all of that in my late twenties, early thirties, and this was in my forties and fifties. Another non-medical reason, I think my internist told me, was that the pancreas "comes to the aid" somehow of the gallbladder when the gallbladder is going haywire. Okay ...... in and out of hospitals again for 5 straight years, 1995 to 2000; OF COURSE, PANCREATIC ENZYMES WERE TESTED CONTINUALLY DURING THOSE YEARS, AS WELL AS LIVER ENZYMES. They watch this each and every time you are in the hospital when they pain-manage you and stop the vomiting/month-upon-month-upon-month, in and out.

NO ELEVATED LIVER ENZYMES, only elevated pancreatic enzymes; thus the huge pain, horrendous vomiting. All of these 12 years, I was working! Even changed careers, reinvented myself from being a corporate meeting planner for the world's largest glass company for 20 years, when job was eliminated went into secretarial work, and then went to school for medical education - was still typing 100 words per minute - put that together with several courses of medical education, terminology, physiology, anatomy, and became a med. transcriptionist in my home for 12 lady OB-Gyn's - large corporation of doctors.

Then the "finality" of it all came to pass - was no longer to work because of all the meds I was on (was falling to sleep at my home office computer and had to work until midnight or 1AM to get hundreds of tapes done) - had IBS, that chronic pancreatitis for so long. SYMPTOM OF ITCHING began in the area of 1999 - no elevated enzymes for the liver whatsoever - no hint of it - see, I think you "float" somehow and not have those elevated liver enzymes. I then was diagnosed with PBC in 2001, along with diabetes type 2 (adult-onset) because the pancreas was "shot"!

I did develop right upper quadrant pain right along the time they discovered PBC; the great internist and my rheumatologist at the time suggested it to my hepatologist at the time, and away they and I, went ....... whew! By the way, have NEVER had that right upper quadrant pain during all of these years after being put on Ursodiol 300 mg., 2 in am, 1 in pm - 150 lbs (it gets prescribed per our weight - was on 4 when I was 50 lbs. heavier at the beginning - lost those lbs. in 2016 - very slowly after being taken off of five anti-anxiety medications - over-medicated during years of 2000 and 2015. Started falling severely Dec. 2015, and primary contacted psychiatrist Christmas 2015, and I was taken off - all of those meds put pounds on me dramatically - plus, can you imagine the effect they had on my liver?

The psychiatrist had been assigned to me in late 2000 to assist in getting disability - which by the way, was crucial to my being approved finally in 2003 (waited two years; applied early 2001). PTSD, anxiety, depression. Am on nothing now and loving it; it is a little difficult, though - am weaning off of one tiny mg of Xanax now, which I got down to, for sleep only. Don't need it. It is doable; I am living proof, and my liver is thanking me right now - GEE, I HOPE ANYWAY!

Long, long story, right? Now you can see how you might be able to have "symptoms" but no elevated liver enzymes! To repeat, both the pancreatic enzymes were monitored closely throughout all that time, plus the liver enzymes - they usually do not do one without the other.

I hope - through this long oration here, you might get a gist of what MIGHT be happening with you. Talk to your doctors. Make them totally aware, and keep repeating to them you know at least one PBCer who had this happen. If you don't get answers with one, go to another; it is a tiring experience. I don't mean just keep bouncing back and forth; usually we are so sick we couldn't do that anyway, and you don't want to alienate anyone because you will be needing their experience and help. They will be with you and will listen. You need to be part of a team. Just keep with them; many are so overburdened. Good luck!

Kathleen in Ohio, 73, Stage 3 now (Stage 1, 2001; Stage 2 in 2011; Stage 3 this year Sept. 2017)

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Thank you for your response. I live in Ohio too. I have been going through all this testing since 2007 it is very difficult to not have diffinitive answers. My dr is giving me a few months off of testing and looking at my blood work again in a few months and then going from there.

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Thank you for your response! I am sorry you’ve been through all of that. Is your ama positive?

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You know, you're gonna' think I'm nuts for not even knowing to ask that question of my gastro, and you're gonna' think he's nuts for not telling me! I had a great hepa 17 years ago - had to leave - there is another long story attached, and you'd get bored reading it, no, you wouldn't because it is a horrid one that implicates a head nurse manipulating him to the nth degree, and he wasn't even aware of it. Nasty stuff ensued. First hepa there punched me in the tummy and said, "I know why you have chronic pancreatitis! You're an alcoholic!" - I said, shaking my head, "no" - he said, "now come'on 'hubby' you can tell me how much she reallllly drinks!' and my husband said very, very meekly, "Like one drink at Christmas time?".

It got worse from there - he sent me over to this other hepa who was positively the neatest guy and so knowledgeable - and a real joker - like came in early am morning of a colonoscopy for me with a garden hose, telling me this was what he was going to use. The entire operating room broke up, and it just got sillier from there - was right on key with every test, all info, and then this nurse started not returning my calls when I wanted appointments with him - I reported her to him - he said he would "look into it". I got a call from their office. Told to come in and get my records. Asked why- no answer, "Just come in and get your records and x-rays, you are not a patient here anymore". Went there - just stares from all the office personnel (women). Handed me everything. Went home. Three weeks later got my final bill. On the envelope was handwritten, "GOOD RIDDANCE TO BAD RUBBISH!" - we threw it out - shouldn't have - saw on 60 Minutes a woman who had same thing happen with almost the same verbage - won a million bucks. Luck of the "Irish"!

Back to AMA - honestly, I have never known! Am I nuts! You know, I mentioned knowing numbers, I always thought, was like watching your weight daily on your scale, up one pound, down two the next day. I could be "all wet in the water" here. You guide me now - do you have some numbers you can share that relate to stages or something else. You know, I'm writing this and taking a real big chance I will appear extremely dumb, but I said I'm still learning. I plan on my Stage 3 and 4 being very, very productive, if you can call it that. Making some major changes in diet and non-medication except for very crucial health problems I have. I plan on not losing any sleep whatsoever. I think that's what life - and what's left of it - is all about. But - please enlighten me - sounds like you are right on top of your numbers, and if there is anything I need to challenge my gastro about, I will, based on what you tell me here. I will just keep learning!

Kathleen in Ohio PS: Oh, by the way, this "office" of the first hepa called me up a couple weeks later and asked why I had not made a follow-up appointment for something. I guess he, himself, was asking, and the nurse(s) there pretended to be as confused as he was or something - I just told them I was told I wasn't a patient anymore there. They asked WHY! I just said "It is extremely hard to get an appointment with him, and there has to be many calls from me to your office". (You see, at that office, it was the head nurses for each doctor who were charged with making/cancelling appointments, not just a receptionist). I thought that was rather hindering in itself, as these nurses had far more duties than making appointments. Weird. This is a huge conglomerate of hepas/gastros in a major city in Ohio, I might add. A million bucks! Wow.

Kathleen in Ohio

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Wow. I am aghast at your experiences. You should have documented the entire thing along with the envelope & threw a lawsuit on them. So disrespectful especially when you are already stressed & with the condition. Where is the medical compassion & empathy. They are supposed to make you feel cared for, not worse.

The thing with the colonoscopy is horrible. You should have reported that to whatever government agency that governs medical ethics. All these medical procedures are scary already without them making fun of serious stuff like that. It is totally unprofessional.

Sorry you had to go through that & being accused of abusing alcohol.

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Agree. I would probably own that whole medical practice. I don’t allow anyone to treat me like that😡no one should ever...

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Hi, nycgirl2012! Yup, should have; didn't. I have been sooooo sick, as you have read - actually 12 years prior to the 17, now, I have experienced being dx'd with PBC and a lot more - I sat there being punched in the stomach and called an alcoholic, and was numb. My husband was numb. We are numb still. It was a shock. He told us he was going to put me over to another hepa there. All I knew was that I had come a long way trying to find a hepa in this city. My other one retired. This "new" hepa actually diagnosed my PBC along with my internist and rheumatologist at the time. Had my first biopsy in 2001. Stage 1 then. Stage 3 now.

The incident in the colonoscopy area actually hit my funny bone. I have a sort-of-stupid sense of humor now because of all I have gone through, and I liked that hepa so much. What a loss of a very knowledgeable and endearing man just because of a group of "head nurses"; the wool was pulled over the doctors' eyes big-time.

Don't know how old you are, but I am getting very old. 73, 74 in May 2018. The older you get, the funnier actually-serious stuff becomes - at least if you still have a sense of humor left. Sometimes, all you have left is to simply let go and go on into living.

I agree with you totally - this "place" was entirely unprofessional in every aspect of its being. It was good I was not under their domination for very long. Chances are, I would not be living right about now. Kathleen in Ohio

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I am relatively young still so it was devastating that I have this condition. It hangs over me like a cloud. But I try to maintain a positive attitude & enjoy my life since we know how precious it is.

I don't think I would be as calm about this if it weren't for my PCP & hepatologist. I am grateful for their compassion & how attentive they are to my needs. Especially after hearing horrid experiences like yours. I count my blessings everyday.

Have a great 2018 & keep the faith!!!

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To: nycgirl2012

Mine is only just one of a minor few, I'm sure, rotten experiences of others who may have not shared the way I did. I look at it as long, gone, and maintain a positive attitude also - know of a gentleman on the PBCers Organization Digest who is 75 and has been in Stage 4 for 10 years, asymptomatic. So there is great time with this strange disease, which you say hangs over your head like a cloud. It does mine as well, and I'm sure it does his!

I have read very recently online - just looking up Ursodiol - that if a PBCer is not on medication for PBC, they can perhaps only live for 1 1/2 years. I have gone 17. And still going "strong". I have many other co-autoimmune diseases that have come along in those years, and they are all "manageable".

As you go along, you will learn much, as I am still doing. Keep in contact with those of us here, and never be shy about asking those great doctors questions, even if you feel they may be "silly". Good luck, and I look toward many other of your posts. Kathleen in Ohio, Stage 3 now.

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Thank you for your wisdom. I feel better knowing that there are people who are still doing so well after so many years. It is inspiring. 🤗

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