Fed up

[June9961]

I have just had a call from my surgery because one of the GPs have reviewed my blood results after I was feeling poorly last week and have said that a CPN call me on Friday to discuss my GGT levels. I know I am going to lose it with them because he/she is going to ask me how much I drink and will sneer when I say I dont. I am really fed up of GPs not reading my notes properly and seeing that I have had PBC for 15 years and what it is. I can only hope that the leaflets from The Foundation will arrive soon and I can give them to the surgery. Rant over. Sorry everyone.

[Nanbn2]

It's true that even GP's jump to the conclusion that if you have bad liver results you drink. I hope the leaflets arrive soon and that you can actually get your GP to read them.

[Saundrella]

:"Fed up" We believe you. I didn't drink or do drugs, either, and yet here I am after 30 years or so with a whacked liver. I would find a new doctor if he/she is treating you this way. It's not acceptable, considering you already have enough to deal with. Hang in there. And don't worry about the rant. Hey, you are being real, just like the others when they report something good happening. Both good and bad stuff happens. We can take it!!

[Oidra]

Stand up for yourself! If someone makes that remark just smile sweetly and tell them they are very ignorant about PBC and they should read up about it from the internet especially if they are female in case they develop the symptoms in the future.

[Hidden]

Hello June9961.

You are definitely not alone here.

I too have had the same from the medics! I switched GP surgeries after diagnose in Dec 2010 and the nurse at the practice I joined asked me every time over a period of a yr (I saw her at 3 monthly intervals too! How may patients are there there with PBC, I would have thought it would have stood out to her?!) how much I drank was, well most annoying. I did eventually feel like saying, "Well I drink most nights" just to see the reaction but decided not worth it!

I ended up clashing with the GP I was registered under at this practice and I got the drift he wasn't that bothered anyway after just writing notes on the blood results I got in print-out so I changed surgeries again just over a year ago. Thought I had cracked it with this new surgery as things were ok during last year but then one of the GPs retired and the new young woman who joined, she had cause to ring me in November last year and started saying the LFTs were not normal!!! This is a GP remember and she should have done some background on PBC if she hadn't a clue. I found myself telling her what my previous blood results were as got them out whilst she was on the phone.

Hope your PBC GP leaflet you have requested does have some impact at your surgery because unfortunately for me I gave my last surgery one and it somehow never ended up in my records.

On the subject of GGT I find I always have to mention this one when I go for my repeat bloods as it is one that seems to vanish off the GP system at random. I had cause to ask about it again November when I went as I told who I found out only later to be the Healthcare Assistant (who hasn't the same authority as the nurses) that it wasn't down on my repeats so I told her that I was not going back at this time if it was missed (was at the other surgery a time or two) and that it was an important one with PBC as the hospital consultant gave me a blood envelope on one of my visits and said he'd write what he wanted and noted the GGT was normally missed out. Needless to say when I returned for bloods last month I requested I see a nurse and not Healthcare Asst and I did see a nurse. She seemed to know about LFTs so that was a start.

[Kaywal]

I think most people (certainly in the UK) with PBC will have a story to tell about ignorant health professional. I had one GP tell me bluntly that it's impossible for a liver disease can cause fatigue. Where did she train? Thank goodness for the Foundation! Hope it goes well x

[JennerLayne]

Your rant is totally justified and understood! It is so very frustrating when I even mention the word 'liver' because everyone jumps to conclusions as to how I 'got here'. During my first few visits with the Gastroenterologist and Rheumatologist, I felt they were skeptical about the amount I reported drinking (not much!) given my liver enzymes were elevated. Incidentally, when I went to my Gasto last month, I asked him why he's never ordered a GGT test. He noted they are super sensitive and one meal that doesn't agree with us or even a small sip of alcohol can greatly skew the results. You might request that additional tests be completed to see where those results land. Good luck June!

[June9961]

Thanks everyone. I think I have just had enough. Like you Peridot I feel that if they had read my notes properly they would be able to see that I have had PBC for some time and again if they bother to look they will see the GGT has always been high. I also feel that they could at least do a little research on the net to find out more about PBC if they dont know what it is. I dont expect them to be able to have experience in every illness, Im not that stupid. Aw well I await the call on Friday lunchtime and if anyone sees blue smoke arising from the north of Scotland youll know i have blown my top.