Making progress but feeling rough - PBC Foundation

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Making progress but feeling rough

Hi all I haven't posted for a long time as I'm still waiting for a definite diagnosis for PBC. After waiting 8 months I had an appointment with the consultant yesterday. He has now referred me to the liver nurse for a fibroscan, requested another ultrasound scan and done a whole lot more bloods and said hell see me in a months time. Glad things are eventually moving but is it normal to wait this long? Especially as I've had bloods done regularly over the 8 month waiting period. Anyway today I feel unwell I'm very tired cold and have got horrible indigestion(first time ever having indigestion in my life) I seem to feel like this every couple of weeks for a few days then I pick up again. I've started calling it my toxic days because I can't be any more specific does this seem familiar to anyone? Any thoughts would be much appreciated

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Hi Palebluesky,

Sorry you are having such hard time. The consultant may be doing some different blood tests other than the ones you have been getting done by gp. It does seem a long time you have been waiting which im sure it's very frustrating . You will just want to know and be treated accordingly. Have they mentioned liver biopsy ?

I do suffer from indigestion but have done for years now before and after diagnosis.

The consultant will hopefully have more information when you see them again in a month's time.

Take care and keep its updated.

Angela x

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Hi angel74 thanks for you reply. The consultant is doing extra blood tests some of which GPs don't do. I have heard today that there is an 8 month waiting list for a fibroscan here not sure if the consultant can do a proper diagnosis without that test? No mention of liver biopsy and I hope it doesn't come to that but we'll see what my next appointment brings. I'm more frustrated with the way I feel at the moment this tiredness and difficulty in focusing on anything really! I know I will feel better again in a few days and will look back and think 'what was all that about' again! I just seem to feel unwell every couple of weeks for a few days.

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Its normal for a liver biopsy to confirm PBC , unless things have changed now (i don't keep up to date with they things). Sometimes the consultant can get scans done sooner when needed, may be worth while asking them to push for it sooner .

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Yes I will try he's a new consultant here and probably doesn't realise the lengthy waiting times we have

Thank you

Marina x

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Best of luck,in mean time,rest on your bad days and dont push yourself x

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8 months is a long time to wait for a diagnosis. That is more of an issue of healthcare resource availability.

The diagnosis of PBC can be established if two of three objective criteria are present: serum AMA at titers ≥ 1:40, unexplained elevated ALP ≥ 1.5 times the upper normal value for over 24 weeks and compatible liver histology, specifically nonsupporative cholangitis and interlobular bile duct injury. In addition, PBC patient often have elevations of aminotransferases and elevated immunoglobulins, mainly IgM.

If your case is hard to decipher, then a biopsy might be needed. Hopefully you get your answers soon. If you have pbc, best to get on the meds as soon as possible.

Hope you feel better. Not sure if what you have is related to this possible pbc issue, but best to see your doctor about it instead of suffering through it. Maybe they can help.

Haley

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Hi Palebluesky waiting times on the NHS can be a long time especially is you are referred to a consultant who specialises I’m in Kent so waiting times are not too bad here. Once your consultant has all the results of your blood tests and fibroscan he may put you on URSO if these tests are enough to confirm PBC. I waited 3 months to see consultant after referral from gp. I had raised lfts positive ANA and a liver biopsy. I then had to wait another 2 months before the consultant confirmed my PBC and put me on URSO. good luck

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Thankyou for your reply I have a positive AMA - M2 and raised Alt since October and the consultant has done more bloods that GPs don't cover so hopefully will have some idea next month of what's going on. Is the ANA test specific to PBC or is it for something else?

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As Palebluesky says, PBC is usually/officially diagnosed by any 2 of 3 factors:

- presence of AMA-M2 (just this, on its own, is not enough for a diagnosis) and/or:

- abnormal levels of liver function tests (lfts) over a period of time [ALP and ALT are the most common ones, but also, AST... plus my Specialist at Birmingham Queen Elizabeth's sets great store by GGT - and looks at lots of others - far more than my GP's tests] and/or:

- a liver biopsy - this is the gold standard if diagnosis is uncertain, but fibroscans may be done first as a guide.

With most people the first two are enough! I do hope you get some answers and treatment soon. Nb Ultrasound cannot detect or diagnose PBC, it may show advanced scarring in the liver if cirrhosis is advanced - but this is usually more in cases of alcoholism, or patients where PBC is very advanced (eg. those who contracted PBC before rigorous diagnostic procedures, and/or the use of Urso). Ultrasounds are used more to rule out other conditions.

I hope this helps, although I don't understand why it is taking so long, unless it is NHS problems . Do talk to the advisors at the PBC Foundation who host this site, see the links in the sidebar, above and to the right - or just Google 'PBC Foundation' and follow links to phone or email.

Take care, Gritty

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Hi thanks for your reply. We have terrible NHS waiting times here in Wales due to the large geographical area plus lack of specialists. From reading posts on this site I'm confident that the consultant is heading in the right direction with the blood requests but not confident that he's had much experience with pbc. He kept referring to it as PB cirrhosis so I corrected him that it was now called PB cholingitis he said he's never heard of that. Could he be looking for the later stages of the disease rather than early PBC? I'm definetly not in the late stage disease and maybe not even in early stage but would like him to get it right. I have spoken to collette who kindly reassured me and pointed me in the direction of a private consultant if I felt I need one.

Thanks again

Marina

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Don't necessarily think that if he gets the name wrong he doesn't know the condition well. (Or that he does know it well) The change of name is relatively recent (2015 ?), and it is more significant to us than to medics for whom it is just a label and who knew it by a different label which doesn't change the known parameters of the disease. Perhaps he meant "I've never heard it called that". Could you ask him to help you understand the difference between the two terms and how this relates to you at present? On PBC website there's helpful guides on how to frame questions that we may find difficult to ask. I recently "corrected" a specialist at our first meeting and could have done it better if her response was anything to go by. :-)

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Yes I have days where I feel I cant move then have sudden bursts of energy.

it took about a year to diagnose PBC.Still unsure about some things but getting there

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Thank you for your reply. Yes that's how I feel just sheer exhaustion for a couple of days every few weeks where I can just get myself from bed to the sofa. Could it be PBC related? If so what causes it? Is it something to do with diet, medication such as painkillers? I just can't make any sense of what my body is doing at the moment. Im feeling better today and will be back in work tomorrow but I'm getting concerned about the days I'm having to take off sick with no specific illness other than being tired.

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Not sure about it either,have changed my diet eat more fish and vegetables,have had more blood tests today and have to see consultant next month maybe will get some answers then.had never heard of PBC before I was diagnosed with it

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Same here never heard of it until last October. I haven't been diagnosed yet but my GP seems to think I have it. Are you on urso?

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Yes on urso 500mg which I have to take 2 a day.

Reading on here I see people take differen mg's.

it is very hard to understand have a lot of questions to ask when

I see consultant next month.

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It does seem to be a very complicated disease. hope all goes well at your next appointment and that your consultant can give you clear answers to your questions. Please keep in touch and let me know how you're getting on. I'm interested in any advice that can be offered with regards to lifestyle changes and coping strategies for these bad days I seem to get.

Take care and keep well

Marina x

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Yes feel quite well today

Take care

Denise x

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Hi Marina, I think with this kind of autoimmune disease, energy levels are likely to fluctuate or be in short supply at times. I find managing this aspect quite challenging. It goes in a cycle: If I’m feeling good I do more, maybe (in my excitement!) too much, and because I didn’t stop before I got tired, I’m exhausted and out of action next day. Do I learn from this? Nope.

I don’t know what it is in your case, but try to rest when your body tells you, regardless of cause. Indigestion, hmm, may be unrelated but often symptoms can be alleviated so do go to GP, as someone else said. Best wishes

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I'm sorry to read how you have these symptoms and the long wait for diagnosis/ treatment. I had 'indigestion' issues. Yours may not be the same, but mine stopped when I ate smaller more frequent meals very slowly, and remained upright for long enough after eating. When I feel myself worry about a thing I stop and make plans to deal with it, and get on with those plans. Worry seems to make our symptoms worse.

Marina, you say that you call these your "toxic days". That makes me shudder. Someone recently described herself as not being "human" to explain how she is to someone close. I doubt either of you two amazing strong and kind women would use these expressions to describe someone else who is suffering real misery. Please don't say it about yourself. Only be the kindest you can to yourself. Pamper, encourage, and be kind to yourself.

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Hi thank you for your kind reply I think your right about eating smaller meals I've been doing that for the last couple of days and I'm feeling better again. I've also cut out sugar and fats as my tryglicides are high. I didn't mean to offend anyone or put my self down by referring to my bad days as 'toxic days' its just that on these days I feel really unwell with no specific symptoms that it's so difficult to describe in any other way. What I'm trying to do is understand what my body is actually doing so that I can maybe manage early symptoms to avoid having days where I'm just confined to the house feeling unwell every few weeks. You have adopted a good strategy for dealing with stress and worry and I'm going to try and follow your advice so thank you so much x

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You didn't offend me or, I'm sure anyone else Marina. You have helped us by expressing what we probably all feel and return to over and over. We understand the symptoms you describe because we have them and people who don't have them can at best only empathise. We want to understand what our body is actually doing for exactly the reasons as you say them. It sounds really difficult for you not even to have had a diagnosis yet, especially when "not knowing" can be at the heart of what is difficult in PBC. But whatever the situation is, you are still you, even on days when you can't think straight. Do you know if your B12, D, E, K vitamin levels are ok? There can be absorption problems of these vitamins. Injections of B12 really works for me, makes me able to think more clearly. My biggest and hardest pill to swallow, but the most effective, is keeping on doing what I can do and learning what I can know, and at the same time just accepting what I can't do or know at this particular moment. We'll amaze ourselves because, no matter that some days are tough, we can do this very difficult thing, be ourselves no matter what. We won't be alone, we won't be kept in the dark information-wise, we won't waste time on what we can't change, we won't be defeated. We will enjoy life by finding through trial and error what and where our own 'lines' are and by keeping clear margins around them in regard to what we can and can't do. When to push on, when to rest. I feel like I'm a mountaineer at times :-) I don't depend on seeing a spectacular view at the top - there may be a white-out, but .... and so on!! I tell myself positive things all along the way, so in brain fog, or white-out, there'll be memorable markers, "be kind to yourself", "nothing to fear", "this won't last", "I'm not alone", "my team is rooting for me". Sorry to go on, I hope this helps, if not you, then someone! There's people here who can make us feel ok again with 5-7 words, I'd like to have that skill, but I don't :-) Very best wishes, keep us updated

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