Hi all, I've had my liver ultrasound scan today, my GP has still not prescribed me any medication until he's had notification from the liver specialist.
I'm getting more frustrated as it all takes so long to get the doctors to decide what to do.
I've had loads of blood tests done via GP then waited 6 months to see specialist and then the specialist said he wanted new blood tests and now the liver scan which I've had today, and all I get is it looks like you have a fatty liver? Not allowed to tell me more. Does this mean i don't have pbc ( I've had positive AMA) I've not been given any new medication since the positive AMA, what can I do it's driving me mad the itch is getting really bad along with the aches all over my headaches are worse and I can hardly get through a day without beng so tired. My eyes sting and I just feel like each week I'm adding more and more symptoms to the pot.
Sorry but I just feel like it's see dr do tests see specialist do test and I'm not getting any answers as they say results go to the person who requested them ( specialist) and I don't get to see him for another four months.
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Twinkle26
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Try not to worry about not having the medication, as far as I know there is only Urso acid they can prescribe anyway. It seems like a really long process getting a diagnosis and the best advice I can give you (going on past experience) is be demanding, chase results, chase appointments, chase your GP. Don't bother ringing a general outpatient number if your chasing though, that's pointless, ring the consultants secretary's direct.
Be pushy and ask all the questions you want answering.
If they say they'll see you in four months, make sure they do. Them that shout the loudest DO get heard! Don't be fobbed of seeing a registrar either, make it clear you want to see the said consultant for continuity.
Please do try not to worry. I know you want to get on with the diagnosis and so would I but the system (especially if you are in the UK) is slow. I think you can see the GP for test results from the hospital although he may not take action until you have seen the specialist. It may also be possible that your diagnosis is difficult because you are at such an early stage which could be good news.
So for starters if you are currently not doing anything for your eyes try using a multi-action eye wash (I use Optrex) with an eye pad to clean your eyes in the morning. You can bathe your eyes in bicarbonate and warm water mix if you prefer a more old fashioned remedy. I then use Systane Ultra eye drops. Dry eyes and PBC seem to go together but medication from the Chemist is something we can do for ourselves.
As to the itch, for a long while I used one a day non drowsy anti histamine which worked quite nicely. Of recent the itch became intolerable again so the local GP recommended that I take Cetirizine two tablets twice a day. Cetirizine can be purchased over the counter from the Chemist although it may be better to have a word with your doctor first.
Unfortunately no one seems to have an answer for the PBC fatigue but quite a few contributors on here have adjusted their working days to accommodate it. I am now retired so everything I do is at a slower pace. Try a little continuous exercise for 10-20 minutes it is supposed to encourage endorphins in our system which are apparently good for us. Rest when you can as needed this will help you to cope during those times that life requires us to be busy. I know when I have the grandchildren I have a nap after they have gone home.
Again please try not to worry overly, worry really brings us down exacerbating our ills.
I have read that PBC sufferers are more likely to die with PBC rather than because of it. For myself I have been diagnosed around 10 years ago although as I am able to look back I am certain that I had symptoms at least 5 years or more beforehand. On diagnosis my PBC was found to be in the early stages and for the most part I enjoy life. It is supposed to be a slow growing auto immune disorder.
For my eyes, I use sometimes Borasic Powder. I dissolve a half a teaspoon in cooled boiling water and then clean them out with an eye pad. A nursing sister gave me this hint when my late son was a baby, many years ago (46 years ago) and it really works. Very inexpensive too
I'm astonished that you are waiting so long to get info from the liver specialist.
As to your results, my understanding is that if your GP does tests you have a 'right' to ask for - and be given - a copy. I usually ask at the GP's reception for a printout, and if I do it immediately, I don't have to pay (some surgeries may charge for the copying, mine, though they do charge for older stuff, 'cos of the time searching through records etc.) If results are slow coming from the specialist, then it might be worth phoning his/her secretary.
I had a look back at your other posts, as you only mention AMAs on here. Although AMAs are a strong indicator for PBC, AMAs alone are not enough to diagnose PBC - some people just have AMAs. [NB - blood donor statistics reveal that a higher % of people just have AMAs - alone - than the much smaller % of folk that go on to get PBC] . I note that you do have some PBC symptoms, so the medics will carry on checking, but the exact lfts will be the clincher, and they maybe want to check over time, to be sure it's PBC and not something else.
I see from previous posts that you have had high lfts, but you don't say which ones were causing concern [NB - I don't understand the colour coding in one of your posts - exact readings are needed]. If you've joined the PBC Foundation (link to their site at the top of this page) you will get their PBC Factfile, which gives the info on the liver enzymes, and the levels, which can indicate PBC. If you can get a printout of recent results, then talk to the PBC F advisors about the results.
NB The ultrasound cannot diagnose PBC, but it may reveal - or rule out - other liver or abdominal issues which could be the cause of the problems.
I would have a chat with the PBC Foundation advisors, as they see the overall picture of all the variations that occur in those who have, PBC.
Meanwhile, take care of yourself, follow diet and exercise suggestions, but otherwise coddle yourself. Stress always makes things worse, especially autoimmune conditions, so try to relax: I know it's easier said than done.
Hello Twinkle26.
It is frustrating I know! I started to itch early 2010 and had to wait until Dec 2010 to be given urso and the diagnosis I had PBC. I have read in articles published in Bear Facts some time ago that if a patient is thought to have something like PBC and is itching (in my case) then urso should be prescribed. Didn't happen in my case. I feel that I might have started to feel sooner lessening of the itch but I had to plod on with it being very intense.
I went for an ultrasound scan 5 months prior to diagnosis and the person doing the scan (is it a sonographer?) wouldn't say anything when I asked. She just said the doctor would give me the results 'in 2 weeks'! I was fortunate on that score that I only had a week to wait and the GP requested I go back in and see me. I thought it was bad news but he said it showed up as nothing abnormal really. He wanted to do some more bloods.
I didn't have the AMA and ANA check until my first hospital consultation. Now I am not sure if I am right but some medications are only prescribed by a consultant and not a GP and I don't know where urso is concerned. Could well be the case a consultant has to OK it.
Unfortunately for me and nearly all the remainder of the UK population the wheels of the NHS turn very very slowly. I find some of it quite ludicrous. I know when I first saw my GP when I was itching, he said he was going to do bloods but didn't do them there and then, oh no, had to make another appt to see a nurse and that appt was over a week later! This to me slow things down. Once of a day at surgery, many years ago, if a GP wanted bloods doing you could wait back in the Waiting Room and the nurse would see you between patients and do the bloods that day. Doesn't seem to happen like that now unless it is considered an emergency and sadly with PBC unless we are at a critical stage with it which is unlikley for the majority of us when we are diagnosed then a case of having to wait.
I'd suggest meanwhile do as I did whilst wiating back in 2010 (it took me 9 months from my first GP visit to diagnosis), take a better look at your diet, change a few things and try to keep as healthy as is possible.
The only other suggestion is to see your GP and mention the itch and ask him/her to speak to the consultant via telephone and find out if he/she can give you urso. I am certain this might work.
Hi Peridot I am on one of my itching excursions again.. Must have eaten something that triggers it off again. Had my liver test done,and it seems to be the best in years,although it is still high.The thyroid has now switched from underactive to hyper active. The Vit D test came out very good. Keep well.Regards
Oh how I feel for everyone with PBC who has this damn itch! Sorry you are experiencing it a bit more intense at the moment. Needless to say that for a couple days mine has not surfaced until going up for midnight and not been that prevalent! Know it won't last though.
I cannot fathom it all out. I am pretty good with my diet but life wouldn't be living at times without a bit of an after-tea treat. Had a small piece of what seems a new chocolate cake dessert here in the UK, Toblerone cake. Got on special offer in frozen section the other day at the supermarket. I am not a chocolate fan at all and always tend to go for something with fruit but looked good. Thought at times that PBC can feel different with certain foods but have to say that for me last night was no different and I still had the odd times when the itch isn't that intense.
I have always realised lately that it seems when I have a free day and the weather not good and I don't need anything and stay indoors all day (though I don't slouch about I have to add, tend to still be on the go catching up with various other things round the house), I find that more often than not the itching is much improved later at night. I thought long ago that keeping mobile would keep the system ticking over better but now I cannot work this one out!
I've been waiting too long it seems since early last year with the tiredness and then again September / October the itch was working its way in then just blood tests, six months to see specialist and more repeat bloods and liver scan. The specialist said I can have the itch tablets but at the time it didn't seem bad but a week later I'd wished I had taken them, my GP don't think I need them and just said double the dose of citirazine. I don't seem to be getting anywhere.
But thanks anyway. I am trying with the diet I'm also newly diabetic and cutting down for that too I don't eat after 9 now well most day it will take time too.
Twinkle 26. I can imagine how you must feel, after all those tests and still you know nothing..I think it is impossible to expect from a patient to wait that long to see specialist.Hope you get answers soon
change ur dr if u can no one should have wait like ur doing for answers if u have a liver problem im not a dr but u should be on meds just my opinion
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