Jackie - new member

Hi. Was thought to have PBC back in 2005 but nobody followed it up. After having further regular blood tests a couple of years back PBC was immediately diagnosed due to elevated liver function tests and was referred to a specialist. My original specialist saw me every 3 months did annual MRI and Bone Mass scans. MRI showed then an enlarged liver but no scarring and the bone mass was lower than average. I am now being seen by another specialist who us very dismissive of the condition. I take Urso 750mg at night and even though I have told him that a family member was diagnosed, had a transplant and has now passed away, he says that I just have a condition which I just have to get on with. He has done no further scans and only sees me now every 6 months and concentrates solely on my blood test results and my weight. I have cried and told him that I am totally consumed by fatigue, even though I try to keep active and at present work part time, and that at times the itching can be unbearable, his answer was to go and buy some antihistamine. I am sure that I should be receiving a little more monitoring, as I was told by the previous consultant that I would always need blood tests every 3 months, would need regular scans and a liver biopsy all of which my new consultant say are unnecessary. I have recently had some blood tests completed at my doctors which showed elevated inflammatory markers which they think may lead me to having another auto immune disorder such as rheumatoid arthritis which I am waiting specialist tests from the blood department. Is the treatment I am receiving at the moment acceptable or should I request more. Can someone help please. Thanks x

6 Replies

  • Hello Mollymoo50.

    I presume you had a special blood test known as anti-mitochodrial antibodies (AMAs for short) done that gave this diagnosis. I was diagnosed December 2010 due to first itcing intensely beginning 2010 - reason I saw aGP a couple weeks later - and then it was found my LFTs (liver function test) was higher than normal. I had a scan several months later, liver and surrounding organs showed to be quite normal. I then had AMAs test (along with another antibodies test, the ANAs hat was negative unlike the AMAs) and from this I was diagnosed with PBC. I started urso December 2010. I have had no biopsy as can be standard if a doctor has doubts and it seems the norm regardless in the States (I am in the UK).

    Now blood tests can vary and it seems that if there is little or no change then it can be normal for a patient to have blood checks less frequently. In the early days of PBC diagnosis if the LFTs I guess quite high they are monitored a bti more frequently. I started off with 3 monthly and then was asked in 6 monthly but then a couple years later I would have been OK annually as was suggested but at the time I said I'd prefer 3monthly so did that. When I've had the odd climb I've been asked to go in at a 3 monthly interval. I did see a hospital consultant for the first 12mths after diagnosis but I then asked if I could be discharged so I was in October 2011 and just see the GP currently. In event things start going haywire I'd be referred back to hospital.

    I think it is how you yourself feel here. Do you itch at all. I have not stopped itching over the years but after a couple years taking urso the pattern of it had altered and it seems confined to later at night, throuhgout the night and by the time I rise in the morning I feel normal once again. It does cause broken sleep during the night so I do get tired later in the day at times. I have to say I was 46 when diagnosed and now 52 and I do feel as if I've slowed down a little but I put this down to the fact that with not sleeping during the night it does have that knock-on effect. But I can do things I want to do when I need to and currently though I do not really know how I am with the PBC (due to itching and/or fatigue not being any specific markers as to how the PBC really is as some may or may not itch/and or develop fatigue).

    I think some doctors in particular don't know enough about PBC, it seems a bit of an enigma to a lot and with certain symptons like fatigue it can be a bit of a broad spectrum as a lot of other health conditions can cause fatigue not only in a liver disorder.

    I know personally I am not that trustworthy of doctors myself due to past experience with a couple family members. I do think if you feel strongly about something then to air the point across and prepare to argue to a certain point.

    Have you asked for your blood test results at all to see how they were and how they are now? I started requesting mine when I was diagnosed due to the hospital consultant writing about Vitamin D (we can be dificient in PBC) and just saying 'a bit low' to which I did not understand. I got the results and saw the figure (was on the line) so I did understand why at the time he was not recommending any supplements.

    I was given a prescription for antihistamine pre-blood checks in early 2010 as my GP thought it might be allergy related the itching. I didn't take Piriton I bought over-the-conhter (as cheaper as it was the same mgs on the script that would have cost more) for more than a few days as it made me very nauseous. It did not help at all as PBC isn't an allergy-related condition. Thoguht to be caused due to used bile in the system, leeches out via the skin as it is toxic so I suppose in one way a defence for us but annoying in another sense.

    If you've not done so, request the free dvd on PBC from Liver North (they are based in Newcastle, UK). They have newsletters online and you'llprobably already know about PBC Foundation if you are on this site.

  • Thanks for replying. I suppose knowing that others are seen less frequently makes me feel a bit more reassured but your right I don't really question anything so I don't know if there are any differences between one set of blood tests and another. I think it was the difference in attitude between my two specialists that really upset me as this second one just does not seem interested. I do have itching but with no particular pattern. Some days it's constant and some days nothing at all. It is the fatigue that is getting me down and is affecting my every day activities. If I am going out I have to go early morning and then I am worn out and think nothing of sitting down and then waking up two hours later, this in itself gets me down as I am only 49. Will definitely ask more questions when I go again. Thanks again

  • Sounds very much like my treatment although I have moved from annually to six monthly appointments. They don't even take bloods was seen in July & the last bloods were done in the previous March. The only scan on my liver was an ultrasound three years ago at diagnosis time. They don't do biopsies now here. I ask various questions as I'm quite symptomatic and was told that I don't have a poorly liver & to stop fussing. The whole appointment was a waste of time. I had a dexa bone scan last year indicating a soft spine next one in three years time. Thank fully I have a good GP so I can vent my anger quite well. But I just felt that after waiting 7 months for an appointment it was wasted.

  • Hi. It just seems like your told you've got this condition that cannot be cured and that will progressively get worse (although I understand that the rate is different for everyone) and then when you appear upset or confused the consultants dismiss you as though, whether you've got symptoms or not, just live with it. I don't know of any other such progressive illnesses that would be dismissed in such a way. Is it a serious condition or not. I felt I had been given a life sentence and then made to feel I was a time waster. The only other thing I have found though is that if I go to the doctors for anything else they always seem to want to pass me back to the liver specialist as it appears that they must feel in some way that I am now his responsibility and that any medication I might need for other matters should be passed through him in case it may have an adverse affect on my liver. Thanks for the reply though it's nice to know I'm not on my own.

  • I can sympathise with you over unfeeling doctors as I was referred to one who dismissed my symptoms, and me, as his tests didn't show anything to explain pain I was experiencing - it appears I was being tested for the wrong thing (!) and when I saw another consultant I was correctly diagnosed with a problem with my bile duct and then, after being referred by him to experts in London, to a diagnosis of PBC. I was diagnosed 3 years ago and have had 2 ultrasounds since then and will continue to have them on a regular basis as my consultant thinks they are useful and as they are non-invasive I have no problem with that. I see the consultant yearly now and have a blood test just before I see him so he can discuss the results with me (all good so far!) but he would bring the appointment forward if I felt there was a problem. I am currently taking part in a clinical study to see why some people respond to Urso (me) and why some don't and as part of this I am having a Fibroscan later this week so that will be useful for me to know how my body is doing. I find the itching gets worse if I go off a low fat diet as I have no gall bladder and my bile duct etc can't cope with fat. If it's possible I'd suggest you ask to be referred to a different consultant!

  • If you are in the Uk you can ask your GP to send you to any consultant. It might involve a wait, but it can be done quite easily. I was misdiagnosed as (basically) having PBC, when I don't have it (just have AMAs, with liver function tests and scans perfect for about 24 years). I eventually asked my GP to send me to see one of the leading PBC consultants. He reversed my diagnosis and discharged me, on the understanding that I can go back to him if my lfts become a concern, or I develop symptoms. If you want to see a different consultant, I would say roughly where you live - in another post on here - and ask people to 'private message' you with suggestions of good consultants who are near you.

    If your lfts are fairly stable, and Urso is bringing them down from when first diagnosed, I gather - from others on here - that it's not unusual for the frequency of the lft checks to go down; but I think an ultrasound every year or two is normal. If you have AMAs and abnormal lfts, then they are 2 of the main diagnostic criteria for PBC, so it's also fairly usual for a biopsy not to be done - in the UK that's more for if there is any doubt.

    However, there are other things to be done for the itching, and I'm surprised the consultant was not more supportive. I would talk to the trained advisors at the 'PBC Foundation' they host this site on 'Health Unlocked'. There is a link to their website at the top of this page, where you will find email and phone links, as well as loads of info on PBC. If you join - it's free - there is lots more info. It would help if you actually know more about your condition, and your actual lft results. In the UK you can ask your GP for copies of your blood tests - the consultant should send all details to your GP. If the tests are recent there should be no charge - I just ask my GP's receptionists, and they do them for me, every year - but there may be a charge to find all previous letters and records (although, really, you should get a copy of all letters sent, as well). It will help in talking to the 'PBC F' people if you know as much about your case as possible. Also, PBC is a funny infinitely variable condtion - as you will see if you read around on here more - and many of us have to become our own best experts.

    I hope some of this helps. Take care, and meanwhile, treat yourself, try to have fun, and de-stress: stress is the worst thing for autoimmune conditions, so spoil yourself.

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