Hi, I'm 34 and currently being tested for PBC- awaiting my bloods and liver scans. I've been having excessive tiredness for the last few years but always had situational circumstances to tie it to.
The last couple of months it has intensified so that sometimes I can't find the words I want to in conversations, have emarrassingky bad short term memory and some days I just have to sleep despite a decent 8 hours at night. This time there is nothing else that could be causing it.
This has been accompanied by nausea, particularly a couple of hours after eating which can last for 2 to 3 hours. Also have bad bloating, wind and greasy pooh, though somedays are worse then others and my whole body and face seem to swell.
Sometime I feel more energetic and have more mental clarity- is this normal to have symptoms wane and wax?
My mum had PBC and had 2 liver transplants in 1993 when she was 39. I'm having the tests to eliminate (hopefully) but can't help but feel worried, especially as I have two sons under 5. Sadly my mum died last year, after living a very fruitful and happy 21 years after transplantation, otherwise I could ask her.
I'd really appreciate your help,
Emma
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Dorothymargaret1
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I am sorry to read about your current difficulties and have no real help for you other than to empathize with your current situation. PBC is such an odd disorder that so many of us seem to experience the symptoms differently and at different times. I have not experienced the tiredness that you write about but occasionally I do hit a brick wall and must sleep. I have the "itch" dry eye and gastric problems. This answer I am sure is no real help but I think you will be better able to understand where you stand once you have your results and hopefully another contributor will come along soon who has better expereince to share with you. I hope you do not have to wait too long for your diagnosis.
It is ButterflyEi! It's really reassuring to hear, thank you. I know it's a complex illness and from what I've seen on here it seems to effect everyone so individually. I guess I needed someone to say I wasn't being mad- the doctors have made me feel like a hypochondriac. Either way, there's something going on whether it's PBC or not.
I really appreciate you taking the time to respond.
Just as an additional piece of information re the hypochondria you mention.
When I first presented to my then GP particularly with regard to the itching he put it down to empty nest syndrome! Right age but as I have never been blessed with children it was rather a hollow diagnosis and at that stage my PBC remained undiagnosed. A little later during the process of a hysterectomy my blood results meant I had to see the GP. My previous GP had moved on and I now had a female doctor (quite a bit older) she just about fell short of telling me I was an alcoholic. Eventually following a liver biopsy I was given my diagnosis. Because of the attitude of the GPs in my surgery I have, until recently, not pursued information relative to PBC. I am just about to get a blood test, the first in probably 5 years which is in part my own fault as life took a turn and my mother who had dementia came to live with me. Now I feel with a different stressful situation in my life my PBC symptoms are causing me some problems and I must pay attention.
For yourself you have a young family so please do not be put off by the doctors lack of knowledge on this subject. The PBC Foundation has a leaflet specially written for doctors, you may find it handy to contact them and arm yourself with the necessary information.
I too offer sympathy and hope you start to feel better as soon as possible. I do find that some symptoms come and go as you describe while others persist in keeping me company constantly !! I was diagnosed 11 years ago at 38 ( 4 children). My main and constant symptom is fatigue while others such as nausea and digestive issues and intermittent joint pain follow a less predictable path.
Your mother sounds inspiring...I really hope your scans/tests are clear Emma and that you have no more need of this site but if you do we are here to help as much as we can. Don't forget to contact the PBC Foundation - a deep well of information and support.
Thanks so much for your reply Karaliz. It's so reassuring to hear as the days when suddenly I feel mental clarity and a bit of energy I begin to doubt myself, especially as the doctors were very unwilling to help and kept pushing that I was probably depressed, which I'm not, or saying that perhaps I had Chronic Fatigue Syndrome which seems a bit of a cop out to me.
That really has helped me to hear that your symptoms can be intermittent. I have periodic joint pain in my knees, I didn't know that was linked to PBC.
My mum was and is so inspiring. It's nice to be able to be on here and hear from people like yourself.
You sound resilient and courageous and clearly needing answers for very real symptoms. Many people with PBC report joint pain of varying severity that can be constant or intermittent and I, and others, struggle at times with a decrease in mental clarity. I am a nurse and often find myself checking medications three times to ensure no mistakes are made.
Sorry Karaliz, I forgot to ask how you are, apart from your horrible symptoms! It must be tough being a mum to 4 and a nurse when you're feeling bad, you must be very strong and determined! X
Thank you Emma - I'm jogging along ! PBC took a back seat to my family/work for the first 7 years post diagnosis but I was forced to acknowledge its toll 4 years ago when my LFTS deteriorated significantly. To cut a long story short I now have stage 4 liver damage - cirrhosis - and am on the trial drug OCA as became a non responder to Urso. I consider myself very fortunate to be under the care of a wonderful consultant who is part of the liver transplant team here in Melbourne, Australia and have more intensive monitoring including, blood tests, fibroscan, ultrasound and dexa scan ( for bone density ). I am currently looking for another nursing job as the public hospital system where I worked is not for the faint hearted and does not consider cirrhosis of the liver an adequate reason to slow down !!
My husband and children have been fabulous dealing with my "liver thing" and I treasure every day as you know only too well with your own mother Emma that life can be fragile and fleeting. Enough of my philosophies.....Once again thinking of you and please let us know how you get on with your results. x
I'm so sorry to hear you're at stage 4. You are pretty inspirational yourself x
Hello Emma.
Sorry to read about your mother. I understand how we can't ask our mothers, I lost mine when I was only 22 (she died with something non-related to liver). I was then widowed and left with 2 young children under 7. Then when my youngest reached 22 and I was working, getting along with life once more and had just remarried in 2009, in 2010, along comes the itch that led to being diagnosed with PBC in Dec of that year.
I do think sometimes it can be better not to try to speculate what could be up but I do think in your case your doctor is going down this route sooner (it took 9 months for me to be diagnosed with PBC) due to your late mother. There are other liver disorders that can give same symptons. Liver scan can't show PBC but can give an indication of how the liver is. Expect you'll have the antibodies check first.
You can get nauseous with PBC and the trick is apparently to have little and often. I can sometimes feel a bit nauseous if I've not eaten and feel hungry these days.
Your mention of 'greasy pooh' could perhaps be related to fatty liver (there is a condition known as NAFLD) as that is supposed to be a sympton of it. I believe this can be controlled more with diet.
I think with PBC in particular symptons can come and go or lessen and stregthen. I itch, started back early 2010, reason for seeing a GP. Since diagnosis in Dec 2010 and taking urso, with changes to my life and also even altering when I eat for eg., I have noticed the itch has reduced greatly and I tend to be a night time itcher these days. I did have fatigue back in 2010 but I never thought anything of it due to how long I was working. Fatigue for me did vanish sometime 2011. So far it's not returned. I get tired odd days if I've not slept well through the night due to itching.
Meanwhile I'd be inclined to jot a few questions down and things you have perhaps thought of from postings on here. Ask the doctor. Also issue your concerns and hopefully you will get some answers sooner rather than later.
The British Liver Trust do have leaflets on liver condtions on their site you can download. Also LIver North covers other liver disorders but they do seem to cover more PBC now I find. Then there is the PBC Foundation. I'll post the links.
Thank you so much for all the info, Peridot. Everyone here seems to have have had such difficulties and I'm
Incredibly sorry you lost both your mum and your partner.
I've never thought of having PBC before but the doctor tested for thyroid and celiac which both were negative, the only thing that showed up was low vitamin d. I know many things have similar symptoms and I just hope my bloods do come back negative this week.
I do suffer from itching on my legs but again it's in waves. When I'm itchy I'm really itchy but then it disappears. I'm just concentrating on the symptoms that seem to be pretty constant apart from the odd day of reprieve.
You sound like you have a lot of the symptoms. Do you have any itching ? That's usually a big sign. Although two children under the age of five can be exhausting too!
Wait to hear from the doctors. Even if you have it, it sounds like early stage. They can put you on Urso and slow it down for years.
For right now just enjoy your family and when you need or have time to rest, take it!
I have been reading these blogs for almost a year now and have never replied to a post....or that I remember at least. (ha ha PBC joke...I need to find humor in it at times!) But, when I started reading your post it was as if you were talking about me. I got diagnosed at 39, but we have determined I had it for nearly 3 years before that. My doctor first noticed my high liver ALP during my pregnancy with my son, which according to him can be normal during pregnancy. But, it never went down and eventually my ALT and AST became high as well, and my Vitamin D is very very low. I did semi-ok until my son was almost 3. Then, it was like I became a different person almost over night. I could hardly do my job anymore that I had done for 12 years and was pretty good at it. I also could not concentrate and at times could not even understand my tasks that used to come so easy to me. I could not stay on task and was easily distracted onto a new task only later to find I had not completed many things that I had started. I started having to make excuses for myself to my boss. I would be in meetings and not even really understand what they were talking about. I can't finish stories sometimes as I forget where I was going with the story and would just have to apologize and start another conversation. It is also hard for me to adequately have conversations as I can't come up with the words to use for what I am trying to say. My short term memory is so bad I now know not to get upset with my husband when I think he has failed to tell me about something. It has become a re-occuring saying "I did tell you that". Exhaustion is another truly bad symptom for me. Not only am I struggling at work with my mind, but I also find that I fall asleep at my desk quite often. On my worst days I come home from work and collapse on the couch or into bed. And other times if I am able to make it through the work week I spend the weekend in bed. I have immense guilt that I leave my husband to be a single dad so often because I am in bed. And immense guilt and sadness when I want to spend more time with my children who do not understand what I am going through. I can hear them playing on the other side of my wall and it makes me sad. My daughter is 6 and my son is 4. Like I said I have been reading these blogs for a year now and these symptoms seem to be common in many of the post that I read. The truly odd thing is I occasionally have a week or so at a time where feel energetic and sharp. Although, these good times are not often. I have NO idea what triggers these good times. I so wish I did!
I have not had the nausea that you have mentioned, and I also am fortunate not to have the itch that so many others have. But, my mind issues and the exhaustion is more than I can handle. I am in the United States and PBC seems to be much less common here. Everyone I tell about it has never heard of it before. This makes emotional support much less. I would really enjoy joining a support group if there was one in my area. But, reading all these blogs (even though I never post myself) seems to help me. It at least gives me the validation that the symptoms I have ARE real and I'm not just crazy or lazy. I have also become a part of the PBC Foundation and keep up with those newsletter. I thank all of you in the UK for all the information. I don't feel we have this kind of info and support here in the US. I hope you find out your results soon and that you find peace no matter the diagnosis.
Thank Schrap. It made me so sad to read your message, I really really feel for you regarding your children. I know that guilt is such a personal thing and no one can tell you not to feel it, especially when it comes to your children. You sound like you're doing your best and that's all anyone can ask for.
Thanks for telling me your story, it has really helped. I'm shall join the PBC foundation if it turns out I need to. I'm glad it supports you when you feel so isolated.
I do very much hope things get easier for you somehow.
Dorothymargaret1, I recently had a liver transplant and like your mum hope to live many more years. Like you I was suffering from tiredness and went to my GP who arranged for me to see a consultant. This was back in 2002. I was also suffering from itching mainly on my arms. The consultant arranged for me to have a liver biopsy which confirmed his diagnoses that I had PBC.
From what you say your reason for your tiredness could be related to many things and I was told early on since being diagnosed with that this disease is not heiredetry. I would assume the odds against having PBC in two people from the same family are great. This is not a lot of help to you but I would urge you not to get too wound up and wait for your bloods and scan results. Good luck!
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