HAVE HAD THESE SYMPTOMS FOR MONTHS AND GETTING WORSE,DIAGNOSED WITH PBC 2001 AND HAVE ATTENDED LIVER UNIT AT KINGS COLLEGE HOSP SINCE 2008, LFTS HAVE BEEN STABLE SINCE THEN BUT ATTENDED A&E AT LOCAL HOSP RECENTLY AS I WAS FEELING SO ILL AND ROUTINE BLOOD TESTS SHOWED BILIRUBIN HAD GONE FROM 25 IN JUNE 2011 TO 31. TOLD CONSULTANT AT KINGS LAST YEAR THAT I WAS FEELING GENERALLY UNWELL AND WASTOLD IT WASNT MY LIVER THAT WAS CAUSING IT.SINCE THEN HAVE FELT PROGRESSIVELY WORSE, MY GP DOES NOT KNOW WHAT IS CAUSING IT ALL AND I NOW FEEL SO BAD I CAN BARELY FUNCTION. HAD CT SCAN CHEST/ABDO/PELVIS ON 23 /6 AND VERY WORRIED IT WILL SHOW SOMETHING REALLY BAD. HOPE I DONT SOUND LIKE A HYPOCHONDRIAC ALL DOCTORS I SEE SAY I AM DEPRESSED,WHICH IS TRUE BUT ONLY BECAUSE I FEEL SO ILL. ANYONE ELSE HAD ANYTHING LIKE THIS, I CANT BELIEVE THAT I CAN FEEL SO ILL AND YET NOBODY CAN HELP ME. THANKS FOR ANY REPLIES
DOES ANYONE EXPERIENCE HEAD SWEATS,UTTER EX... - PBC Foundation
DOES ANYONE EXPERIENCE HEAD SWEATS,UTTER EXHAUSTION, LOSS OF APPETITE AND WEIGHT?
With such a high bilirubin I am shocked that the doctor said it's not your liver. The usual indications for a liver transplant evaluation include abnormal levels of serum bilirubin, serum albumin or prothrombin time. also, any symptoms of edema, ascites (fluid in the abdomen).
I have no ascites, edema and recent LFTs done at local A&E were ok including prothrombin.missedo annual appt at Liver Unit at Kings Col Hosp last wk a s I just felt so ill so last Bilirubin result consultant saw was 25 which I know is higher than it should be but consultant not worried about it at that time. It's just bilirubin that's raised on tests done at A&E recently.
Tbank you for reply
It is confusing, my bilirubin is high 30ish, but all my other bloods are stable, however I feel quite well and do not have any symptoms at all. I hope you get an answer to how you are feeling. Take care
Just wondered if you had had your iron levels checked. I was utterly exhausted and they found the levels very low. Just an idea.
My haemaglobin level is 14.2 which is quite high, in fact its been gradually getting higher over last 3 yrs and I have wondered if this may be of any significance. ferritin levels were a bit low some time ago but ok at last test. otherLFTs within normal levels just bilirubin jumped from 25 in June2011 to 31now.
wonder if anything else going on and so worried.
thank you for reply
I have these symptoms as well, I get terrible head sweats, exaustion, no appitite and up to now I have lost over 7 stone ( 104lb I think that is for US )
No wonder we are depressed what the hell do they exspect........... to see us all jumping for joy!!!?
So sorry you are suffering like me, presumably you have seen doctors and been to hosp, what tests have you had?
Tbanks for reply
Hi sorry you're feeling so unwell I just wondered have you any other autoimmune illness or do you think you could be developing one you could ask your doctor to do some tests for things like lupus sjogrens thyroid just a thought hope you feel better soon x
I have Hashimotos Thyroiditis a.nd take Thyroxine, also Crohns Disease which is not active and of course PBC so have a lot of autoimmune conditions which I know can overlap.was tested for lupus, celiac disease and various other things but so far only PBC confirmed. Saw Endocrinologist in Feb, all blood tests he checked were ok but feel so ill and don't know who can help me.
Thank you for reply
Hi Lucy - Have you ever had a biopsy? I ask this because the blood tests really are not a reliable way to determine the state of your liver. I speak from personal experience. The ONLY thing off in my blood work was that my ALT was slightly elevated. Normal is around 35, mine was usually between 50-78....which is considered slightly elevated. The biopsy was done, simply because my ALT was consistently elevated for over a year and they couldn't figure out why. Anyway, my biopsy showed that I had Autoimmune Hepatitis and PBC, Stage 3. I couldn't have been more shocked. I don't have any of the positive markers (i.e. AMA, etc.) in my bloodwork, but a sampling of my liver clearly shows evidence of these conditions. It isn't typical, but it does happen in about 5% of cases. Since your biirubin is off, I really think you should push the issue. Better safe than sorry. My doctor believes I've had these conditions for about 15 years - if I had only known, I could have been taking meds. to slow the progression and I wouldn't be in Stage 3 right now.
Oh and -- Vitamin B12 is another vitamin deficiency that can cause exhaustion (and a myriad of other symptoms). Perhaps you should have that checked as well?
Hi,
I started with the sweating profusely a few months back, all over my body day and night. Drips off me whether its warm or cold. Also feel just unwell and exhausted. Lose my appetite every few weeks for a while but dont lose any weight. I'm 59 and been on hrt for about ten years. Recently no libido and skin so dry and flaking too. I asked gp if I could change hrt but the won't. Had blood test today to rule out any thyroid problem. Awful having to live like this. Oh, does anyone wake up several times every night too?
Hi I was diagnosed w PBC and then started w sweating chills fatigue found out I had ANOTHER Autoimmune disease of thyroid Hashimoto. I have another one that developed in my brain. It seems when the body starts attacking itself more autoimmune issues happen. I wish you well but I would insist MD do thyroid tests also
I'm curious about your appetite. Does anyone experience having 'no appetite' and if so, what do you do to encourage food intake? 
Liver pain after emergency surgery
Feeling faint after food
cirrhosis
Fenofibrate
