You may have seen my other questions but briefly I had auto immune anemia all my life, had spleen removed in 2009 and now suffer fatigue, weakness, headaches, foggyness amongst other symptoms, it was put down to ME and recently fibrolyalgia. I saw someone at Guys hospital who took lots of bloods, I tested positive for AMA, Vit D deficiency and elevated bilirubin but other LFTs ok.
I just saw my GP, I had e-mailed him about this previously to pre-warn him of my questions but unsurprisingly he hadn't read it. He hadn't read the letter from Guys either. He wouldn't even contemplate the possibility of PBC saying lots of people test positive for AMA. I tried explaining to him to look at my history, my age, my symptoms and that it all fits and surely it's worth looking into. He said it's like hanging a coat on a peg that doesn't fit!
Am I mad and making this all up! He did eventually agree to refer me saying it will take a long time, whether he will or not time will tell.
I left feeling so stressed and upset. Maybe I have read too much into it online and wound myself up that this is why I feel the way I do and he is right?
Any thoughts?!
Written by
KathryH34
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I would suggest to communicate with the PBC Foundation. They are struggling to ensure (in the UK) that as many doctors as possible are informed and benevolent about PBC/ PBC patients, and that patients have access to their rights, as far as I know. Get advice from them.
And try to relax. Anger and being upset are beyond the last things that your liver needs :). All the best !
LOL thanks I've calmed down a little now, it's just infuriating when they don't listen or even read the letters they have! I have e-mailed the Foundation with details and asking them for advice on whether it's something I should be pursuing and if so how I can convince my GP!
I have been finding out since diagnose that a lot of patients diagnosed with PBC have actually been fortunate to have the AMA blood done via the GP. I had to wait 13wks to go to the hospital after the GP said he'd refer me in 2010. I stupidly never managed to find ut what his last blood test was until I visited the hospital all those wks later to find the GP had done the copper one (Wilson's Disease) and that I wa to have the AMA done that day and had another 2mths wait to be informed I had PBC.
Then after all this, I find it is like a battle at my GPs every time to get the print out of the bloods. It is an 8 doctor practice and I registered just after diagnose (there was a new GP at my old surgery, he hadn't a clue), seen 3 of them so far, all male GPs and 2 out of the 3 can't see why I want to see a print-out of the results. The only one who had no problem said he'd make a note on my records when I saw him Feb
2011 that I can have a print-out every time. That's never happened as I got stuck under the GP I registered with who sees the blood results each time, the very one who can't see why I want a print-out so it goes on and on.
I wrote a letter of complaint on 5th Nov and never heard anything from the Practice Manager and then reprinted same letter with another short one asking why I had not had a response and a wk on still nothing.
The GP I saw at urso review Oct stated it was 'an admin issue' and he would get the Practice Manager to contact me so it can be resolved but nothing and now 2 letters.... and this is for something so simple!
Sorry to hear about the troubles you are having, I'd write one more time if I were you and say if you don't have a response within 7 days you;ll be copying all 3 letters and making a formal complaint to your local Primary Care Trust, that might make them sit up and listen? Hope you get it sorted.
I've also had an unpleasant experience with a locum doctor ('liver diease can't make you fatigued'). I think it is a fairly common occurrence (I ranted on here afterwards aswell and got some good feeback). You should be referred to a liver specialist because of the raised bilirubin,regardless of the AMA, I'd have thought. It's hard when you know yourself that something is wrong but can't get the GP on board and the tests performed by GPs are a bit like trying to kill an elephant with a drawing pin when dealing with something as unusal and hard to diagnose as PBC. Keep at it, get a second opinion.
Well I definitely believe that having a problem like PBC can make one fatigued. My theory is that the AMA which as you know being anti-mitochondria (antibodies) cells which target mitochondria cells of which are energy cells, well that makes sense to me there anyway.
Altho' I wasn't keen on the hospital consultant at my first appt Oct 2010 when in the space of 5 minutes he had written me off as 'retired' (I was only 46 and had quit a very demanding job but it was my husband's idea and it took much deciding there to actually go through with it in the 6wks prior to the hospital appt. I have so far not claimed any disability or whatever they are known as and technically would be classed as unemployed tho' I do not sign on as such. I do work voluntary tho') plus also I shouldn't apparently still be a woman in the midst of having a menstrual cycle!!! This consultant however did say on my return visit 3mths later after he had sent the diagnose to my GP Dec 2010 that PBC 'does cause fatigue' and it's not exactly understood why nor how one comes to get PBC along with there is no cure.....
Was just having a read through including your post and it does appear to be a common problem. My GP could be right I may not have it but I have symptoms, test results etc that should at least make him refer - which he did agree to in the end.
What annoyed me the most was his manner, he hadn't seen the letter and was on his computer saying well which one is it - I don't know I don't use your stupid computer system! I then told him 4 times the blood test results and recommendation I be referred to heptologist was at the bottom of the letter before he finally looked then muttered some more!
He kept looking at his LFT tests done in January saying they are all fine there's nothing wrong etc! I was trying to say well surely these more recent tests have to be worth considering you can't just ignore them!
I can see this may be a long battle with no answers at the end of it, I've felt ill for a long time with fatigue etc and in one way to have a proper answer would be a relief as people think it's in your head but it's not going to make my symptoms go away if it is PBC or not so I shall plod along as normal and hope my GP is doing that referral.
Hi KathryH34 If I was you I would go back down your GP practise and make another appointment with a different doctor and try and get the outcome you are looking for. During/after my diagnosis for PBC I changed doctors at my practise as the one I was seeing didnt get PBC at all. My new one is fantastic - so dont lose faith!
Get yourself another doctor, one that will listen. This is your health and you want help to get
better not some egotistical buffoon who thinks he knows it all. Get another GP and keep looking until you find a good one.
And by the way, you have every right to be frustrated and angry at your GP - If you feel anger it's important to let that feeling out because suppressing emotions is harmful in the long term.
Thanks everyone, he told me lots of people are positive with AMA but when I researched it less than 1% have positive AMA and don't have PBC so that in itself should be reason to investigate let alone my auto immune history etc.
I am hoping he will refer me - though it took 3 times of me asking to get a referral to Guys, but in the meantime I've made an appointment with hematology as Guys results showed some auto immune anemia still bubbling away and they have always been very good and let me ring up and come and see them when I feel I need to so I am hoping if I show them the letter from Guys they will be a little more helpful. Certainly won't do any harm to try.
Maybe Guys messed up the bloods but if that's the case I need to be re-tested. My real concern is if I have it and it goes undiagnosed I am on various medications long term that could have an impact on the liver so I have to know I am not doing myself more damage.
I have also e-mailed the PBC foundation with the facts if they come back with some information suggesting it should be looked into I can also forward that to my GP.
I keep debating changing my GP, he's quite senior at the practice so I am wary about transferring to another doctor in the same practice and it is really convenient as they are across the road from work. Might use the excuse I want a female GP or something!
Thanks everyone for your replies
You need to ask for your immunoglobulins to be done also, with PBC IGm tends to be elevated, and this is also an indicator as well as the AMA as a diagnostic criteria.
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