Hi all im new to all this waiting to see the specalist.

[donnathompson]

Really scared as to what im going to be told,been reading all the comments and will just be glad to be told what i need to do.Dont really drink that much so wasshocked when my gp told me my liver function blood results were what you expect to see in an alcoholic even asked me if i were one.Got my appointment so will hopefully get more info. :))

[kosy2]

Welcome I pray that you do get answers. My experience has been that I leave the doctors office more confused. The doctors I have see run all kinds of test and tell me what I don't have. None have given me ANY information on PBC.

Any real information has come from searching the internet. This is a great place to come for understanding and support. How are you feeling? Do you have any symptoms or just elevated LFT? Please keep us up to date.

Michele

[donnathompson]

Im always really tired feel like i could sleep for days which is unusual for me also have aching joints and red blotches on my hands. I would love to keep in touch with you what are your symptoms? and when did you get told you had it.xx

[zipitydoo]

Hi Donna,

Before you see the specialist write down any questions you have for him/her. As its always too easy to forget something you meant to ask, and if you have a brain like mine forgetting is very easy.

[zipitydoo]

Just noticed you are from Sheffield. The hepatologist I see is at the Hallamshire.

[kosy2]

I was not aware that I had PBC until I was rushed to the hospital for the second time in 3 weeks. It was Christmas day 2010. After seeing my blood results, specalist said "has any one told you that you have advanced liver disease?" I said "no, about 3 years go gp said I had a fatty liver thats all. While in the hospital he did CT scan, MRI and ultrasound and lots of blood test. Three weeks later I received a letter from him stating that test showed AMA+ and I might have PBC. Come back in 3 months. I was mad he sent me a letter to inform me insted of explaining in his office and me have the chance to ask questions that I changed doctors. New doc was not much better. He just wanted to remove my gullbladder even tho lap band doc and HIDA scan showed no problems.

Sept. 2010 I had a Lap Band placed to help me loose about 130 pounds, however, after 3 monts I started to have issues with food getting stuck and not being able to eat anything that was not liquid. So Dec. 2011 had band removed and liver biopsy done at same time. Sample #1 showed stage 1, sample #2 showed stage 2, sample #3 showed stage 3.

I have spent the last 15 months on the internet almost all day (when I am not sleeping) researching PBC.

My symptoms are itching, always tired, dry eyes, GERD, ressless legs, strange brown spots (I think it is Morphea - another autoimue disease), underactive thyroid dx age 35 (now I'm 54), mild joint pain (left thumb, right knee). stomach ulcer, depression. Last 10 years just thought it was menapose.

I take synthroid, B12 injections, vit. D, folic acid

So fed up with doctors that other than gp had given up on so called specalists.

Looking back, I think I have had PBC for a long time (early 20's). I will take each day as it come and will only seek treatment to make me as pain free as possable. No intention of ever looking for liver transplant.

[donnathompson in reply to kosy2]

i didnt know it was as bad as this my gp told me i have it and i need to see a liver specialist who may want to do a liver biopsy. looks like i got a lot to learn may not even bother going.

[kosy2 in reply to donnathompson]

The only reason and I repeat only reason I had a liver biopy was the fact that they did it the same time as my lap ban removal. They were able to take several samples from different parts of my liver. Because each sample showed something different I wonder if they had done a forth sample mybe it would have shown stage 4.

In the end, doctors are only going to treat your symptoms, so maybe a biopsy is not necessary.

Forgot to mention that biopsy did show iron overload.

Please don't let my issues scare you. One thing I have learned is that People with PBC can vary extreemly.

[mojo62]

Recently diagnosed myself. Back and forwards to GP for some time now complaining of tiredness but as I have had an underactive throid for some time it was the only thing mentioned. Eventually further blood tests revealed significant changes in liver function. PBC diagnosed last month by which time the itching had already started. Awaiting a fibroscan and ultrasound to see where we are but not sure if it is a good idea knowing.

Sometimes want to bury my head in the sand. Still carrying on working and looking after family and appreciating the simpler things in life. Never a drinker or a smoker and have always tried to take care of myself. Had already had to cope with cancer in my 20s and now this at 47. Sometimes I feel I must have been bad in a previous life to deserve this. Don't mean to sound depressing though!

Let us know how you get on. Will keep my fingers crossed for you.

[Hidden in reply to mojo62]

Hello mojo62.

Snap! I thought I had taken care of myself over the yrs too (we are the same age, I was diagnosed when I was 46). Not much of a drinker nor never smoked either. Likewise, I too often wonder what I did in a previous life too to get this (given there are locked up murderers who seem to live a pretty good life, live long.....).

I too came across PBC myself when researching what could be wrong after every diff blood test 2010 (was 6mths before I had the AMA) but thought I couldn't have anything like this so shrugged it off hoping it would just go away over a few mths.......

I never mentioned it to the GP regards maybe PBC as was bad enough him being young and new and he wanted to ship me off to the hospital for colonoscopy and endoscopy had he had his way when I said that was nothing to do with what was going on. He also told me when I saw the hospital consultant it was more than likely I'd be asked to go for a liver biopsy which I said I'D decide when the time came. He never told me the final blood test he was going to do so I rather naiively went to the hospital for the first appt (I'd previously had an ultrasound) thinking that the GP had done the AMA to find out I hadn't (was for copper).

I found the 8mths a bit traumatic to be truthful, the to-ing and fro-ing to the GP for this and that blood test, then the scan and the 2mths wait to find out the result of the AMA when that was finally taken. 2010 was not a good year for me or my poor husband and we thought that after the diganose (I already knew myself so came as no real surprise, just a shock for my husband to be told by a doctor that I had something that 'is incureable' plus there is no way of knowing how the future will go), we could just get on and have the blood tests at intervals for hopefully continuously....

This yr so far, it has been one headache after another at the GPs. I have a battle to get the blood results. Know they are just figures and the last two times now I have just looked, compared and then filed them away thinking if I feel ok then that is that, but I do want to know as I expect for a lot of us it is the only control we have on the PBC as none of us know which way it is going or going to go.

Some nights I have bad ones with the itch, others don't have any. Just got to get a sort of on the level now with visiting the GP and would feel whole heap better there.

[mojo62 in reply to Hidden]

Hi peridot

Had my fibroscan yesterday but results showed stiffness in liver. Have to now wait until the end of june to see my consultant to find out what this means. Can I put it out of my head until then? Very unlikely. Going to ask the forum if anyone is able to interpret the results. Hope you are doing ok. take care

[Hidden in reply to mojo62]

Hello mojo62.

I once asked on here about what a fibroscan was. Since seen picture via Google.

I've never had one (only had ultrasound, diagnose for me was by the AMA blood test as it was suspected I might after other blood tests) but think your results go on some sort of scale from what I have read.

I can't obviously say more as I wouldn't know what I was talking about there.

I've just had 4 days of relatively itch-free nights so not doing so bad at present. But I realised jsut recently I've had the symptons from PBC for 2yrs now and to me if I'm still chugging along, well hey surely I can look forward and with more time I'm really hoping this PBC lark becomes something to not think about so much, just pull a face and get on.

[donnathompson]

Bit like me really i ad ovarian cancer at 36,these past four year ive had mumps,had my appendices out,and just keep getting colds all the time.Im seeing a counselor at the moment because all i do is cry im still holding down a full time job but get really tired.Hoping my gp got it wrong.xx

[LindaRose]

The one certainty with PBC is that everyone has different symptoms and other different conditions alongside. So don't be scared by what other people say they have. If you haven't already, contact the PBC Foundation because their excellent compendium has everything you need to know about PBC in it and they and their lovely volunteers are there to support you. They will give you names of people you can meet locally and in meetings.

[Val02]

Hi Its alot to take in when you are first diagnosed and can feel quite scary. It does get easier to cope with but it can require some fundemental lifestyle changes.

I remember when my GP first told me about my liver results how stunned I was, especially as I had gone to get treatment on a painful shoulder - I remember sitting there thinking, "no it cant be me Ive only got a bad shoulder".

You need to get in touch with the PBC Foundation and they will provide you with lots of information about PBC.

Good Luck at the specialist!

[Hidden in reply to Val02]

Hello Val02.

I recall back in 2009 popping in to see the GP about a bit of a painful shoulder at the time. Thought I had done something in (domestic) work at the time. I saw the GP and came home with no prescription (that for me would be a last resort) and saying I'd see how it went.

I never returned with that as I thought that maybe it was onset of arthritis as I'd gone 40 but within a short period of time it had diminished and then vanished so I put out of my mind.

The following yr when I started with the itch I had lft's done and the rest sure we all know, blood test after blood test, scan and consultant and then I was diagnosed with PBC Dec 2010.

I think the shoulder pain may have been connected with PBC as there's a nerve passing via the liver - one that some patients I believe can feel when having liver biopsy. Have to say tho' that unless I am doing anything like lifting or carrying shopping, I no longer seem to have the shoulder pain so if so it could be down to being on the urso now for 16mths.

PS donnathompson,

Personally once you have a diagnosis (and forgot to say that it's pretty doubtful you'll have a biopsy if suspected PBC. My GP said I could but it was never mentioned as nowadays normally an AMA blood test can diagnose), you'll know then how to get on.

I was reluctant to go myself and kept saying I didn't want to know but I think deep down you do want to know, it is getting there that is the scary part.

Once you have diagnose, you can then decide how you want to go with it all. I actually told the consultant at the hospital 6mths ago that I didn't want to keep on going to see him at regular intervals as at the end of the day at present there is nothing he can do really. He agreed and said he'd discharge me but in future if needs be, I would have the appt made. That sorted, now I need to sort the issue of how it has been going with the GP.........

[spoul]

please don't worry its not a death sentence. I've been diagnosed 14 years, had to retire early but quality of life is good. Take someone with you cause you'll forget to ask stuff and won't remember half of what the consultant says. Contact pbc foundation when your ready but don't overwhelm yourself with info

more important than anything look after yourself and get plenty support xx

[Hidden]

Hi

It seems you have had alot to cope with already and I can understand how confusing it must be. Everyone is different - I have raised blood levels but no symptoms - my husband says he has them all.... Do push to see a specialist, who should know more about the condition, and ask lots of questions. I wish you luck.

Lou

[JerseyChris]

Please dont be too scared - I have been diagnosed about 10 years and, although have had to make some adjustments, I have a great life. No 2 days are the same and I just go with the flow and maintain a positive mental attitude. The symptoms are so varied and we are all different with some having no sympoms. Please do contact the PBC foundation for facts and the compendium when ready. Some of the stuff on the internet is really scary and I just avoid it all. Good luck and I agree with other advice to go prepared with your questions and not alone. It can be difficult for Doctors who are not specialists as they may not have had any previous patients with PBC. The Foundation can supply you with information leaflets for the Doctors. Good luck x

[TracyLou]

Please don't worry. I can understand how you feel, when I was first diagnosed I thought I was a gonna and told all my friends I loved them dearly, but now feel a bit of a fraud. I have most symptoms tiredness is the worst. The first time I saw a gp about my painful arm they said it was mechanical it wasn't until I moved to another address that one took it further and after blood tests asked if I was an alcoholic. Shocked as I was a mother of two wee ones back then and never drunk alcohol was relived when I finally got diagnosed. I try to get with my life the best way I can.

Do take some questions with you when you have your appointment most will be happy to answer.

Good luck x

[Magnolia]

Donna, Don't be frightened of this disease. I am almost 64 and have saw high LLT's since 1987. By 1993 I thought and I guess so did the Dr's that they were due to me taking meds for inflammation of tendonistis and back problems. By 1997 I had my first liver biospy and still that specialist only said he could be early stages of three different diseases. He never even asked for a follow up. By 2003 a pain specialist kept prompting me to see my GP to seek an answer to the elevations. It took alot to happen, from there for them to send me to a GI dr. From him I had another biospy, which was sent to the Mayo Clinic and finally had diagnosis. I had no symptoms through all of this, except going through periods of fatique. Just this Jan. I started with the itching, which I take Cholestryamine for and it seems to help. I have been on Ursodiol for 9 yrs. I have had a MRI recently and my liver is still not scarred or enlarged. I have read and been told that most people die of other things, who have this. Don't believe every thing you read on the internet. Go to the trusted and well know sites. I do now have the joint pain and use ultram for that. I am praying and wishing all will go well with you.

[Hidden in reply to Magnolia]

Hello Magnolia.

Thanks for sharing with us all your experiences of having PBC. It certainly made for a good booster for me.

I know for me I'd never have known I had PBC as the consultant reckoned I'd had it 'a few yrs' prior to developing the itch in 2010. I've no idea how long my lft's were raised but I am of the thinking, 'what you don't know.......'

I did suffer badly for several mths with fatigue back in 2010 but I'd been no stranger to sleepless nights (that is another story) and often feeling tired in the daytime so for me I'd have ploughed on not knowing about PBC had I not developed the itch.

[melisab]

Hi Donna. I was just recently diagnosed with this too. I have my biopsy in june. The liver specialist that I went to told me not to count my days!! She said she has many women in their 80's that have PBC and are completely fine! they started me on Urso and I have noticed that some bothersome symptoms that I had went away. I am blessed to not have any of the itching. I would have never know I had this except for just a routine blood test. My husband had a patient a couple of weeks ago that is 78 and she has had PBC for 18 years and has never had a problem. Everyone is different so don't get scared by what you read!! It is easier said than done...trust me I am guilty of it!! Just take each day as it comes and know that this is not a death sentence, My liver specialist also told me that most likely my body would die before my liver does!! I have also noticed an inprovement with taking milk thistle and dandelion (which was also recommended my the specialist)!! Take care!

[Jtxx]

I was diagnosed with 2 autoimmume liver conditions last year (one of which is PBC) at the same time. They call it an overlap symdrome. Just keep a positive attitude. I too am fortunate that I do not have the itch but have fatigue and memory fog!! Again like everyone is saying, contact the PBC Foundation. Great source of info and support. This site is also great for support. Feel free to post any questions that you want answers to and someone will always give you a reply if they can. Wishing you all well. x

[Pat_H]

Hi Donna

Well, your GP certainly knows how to speak carefully to his patients, doesn't he. It seems to me that he doesn't know much, if anything, about PBC: remember that GP stands for General Practitioner, not specialist. No GP can be expected to know everything about everything. Register with the PBC Foundation and they will send you a compendium which explains things clearly and which includes a leaflet to give to your GP explaining what PCB is. Unfortunately it doesn't include a training course for GPs on how to speak carefully to their patients.

Pat_H

[donnathompson]

Thank you to all who have left me comments and offers off support,i have had a call from the hospital to bring my appointment forward by 2 weeks but have decided to stay with my original one. I think i may just bury my head in the sand and not go at all because what you dont know cant hurt you and it does not seem like theres much they can do anyway..

[milo2002]

Good luck , I diagnosed myself last year and felt terrible / shocked and couldn't believe what was happening . You dont need to have a liver biospy as this does not change the mamagement of the condition . I think that over the next few years a specifically targets medication will be found using immunotherapy.

[EAJSWW]

I echo what some others have said it is not the end of life for you..

.... you live with this disease... it is not what you are!! (hence the name of my own blog!)

I was diagnosed 10 yrs ago and was terrified at first as everything I read assured me I was going to die an agonsing death.. Of course now i know so much more ..

Donna... if you do not go to the hospital, I am afraid that it will not help you... the problem is.. you DO know you have an illness and whilst there is yet no cure, the condition CAN be managed! You can also be checked for and treated for other autoimmune diseases that if you have them CAN be cured!

If you have not already contacted the PBC fuundation, please do so. They can give you real information that will help you to mae the decision of whether you ant to ignore your diagnosis or not. Noone can force you to take treatment, but you need to know facts before you make that decision!

It is frightening... most of us on here have been where you are... But it does get better!

Write down any questions you have as and when they come to you and dont be afraid of taking a pad and pen into your consultation with you, as the questions and get the doc to write down any complicated words / tests you think you are liable to forget.. you can then ask the foundation for more information or clarification on what you have been told if you find you still have unaswerd questions when you get home.

Have a good Easter if you celebrate it and try to relax a little. x

[Jtxx]

I agree with Eajsww. You have to see the specialist and see what he has to say on the matter. Although there is no cure, as yet, PBC can be managed and the progression slowed down. Once you get your head around it you can just get on with living your life to the fullest, You may or may not have to make some adjustments depending on your symptoms but it is not a death sentence. Please stay positive.

Let us know how you get on. x

[donnathompson]

Had to go and see the doctor today the pain in my ankles is unbearable,she said there a bit puffy and gave me some Naprosyn hope it helps.

[donnathompson]

Hi all been to the hospital today. I have definitely got pbc got to start on ursodeoxycholic acid tablets.Going back in six week for the results off my blood test after today not sure if i got any left...:))

[Jtxx in reply to donnathompson]

At least you have a confirmed diagnosis now and can manage the PBC with the Urso. As far as I know most people can tolerate the Urso with no real side effects. Keep as well as you can. x

[donnathompson]

Hi all just been to doctors as im not feeling very well,.The doctor has got a letter from the hospital confirming i have pbc.Lfts with an phos of 611, been elevated since2009 when last checked it was376,alt66 globulin41.Also need to have some test done as i am boarderline splenomegaly(spleen i think).Can any one tell me if the lfts are good or bad as i think it is so complicated.

[LauraQ]

Hi Donna,

I'm afraid I can't give you any information on what your readings mean (most of them I don't understand!) - my last reading was around 600 on the phos scale, in January it was over 1200 so I'm just pleased they've dropped and my Consultant is happy to see me in 6 months rather than monthly visits. I'm sorry to hear you're not feeling well. I'm on Urso have been since being pregnant with my second child- this was when I was diagnosed. I'm quite tired in the late afternoon but with having a 7 month and a 3 year old I put it down to that!! I do have an ache in my side sometimes but apart from that feel quite well. I haven't looked at all of these replies but the PBC Foundation is a fantastic organisation which can give you information and support. I'm pleased you went to the appointment, I know its daunting but having the information is better than trying to ignore that anything is wrong. x

[donnathompson]

Hi all been a while since i wrote anythink so here goes,waiting to go back to the hospital for my follow up appointment to check my bloods and scan. Been back to the doctors as at the moment my hair is falling out again but apart from that not doing to bad..Hope you are all keeping well speak to you soon.