Decided to go private

I have lost patience with NHS waiting list since finding out urgent list is now 3 months long and not 8 weeks. Since having a positive AMA test yet no confirmation as to whether I have PBC, it has all been like a cloud hanging over me.

Symptoms havent improved, been feeling worse so Ive managed to get a private appointment with the specialist I am on the waiting list to see. Its £140 and the wait to see him has gone from 5months general list, 3 months for urgent list and now 6 days if willing to pay. Crazy isnt it?

I am spending alot of time preparing, with establishing exactly what I want to achieve from it and listing my symptoms just incase I forget to mention crucial things at the appointment, in fact I am looking forward to it as I need some answers, and want to get well.

Fingers crossed hey?

14 Replies

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  • Hi Hannah

    I know exactly how your feeling!

    I received a letter back from the doctor today, informing me that the consultant at Addenbrooke's Hospital doesn't feel there is any need to see me at present as my lft's are normal.

    Now, I've read in the bear facts that patients are being diagnosed with "NORMAL" liver function tests AND ASYMPTOMATIC so where does that leave you?

    They have stated that there is no role whatsoever for MRI scanning!!!

    I'm wondering if these people would be so laid back if it was them???

    By the time your liver function enzymes have risen, hasn't a considerable amount of damage already been done to the liver?

    And if I feel it best that I have an MRI scan to check for any cell changes in MY liver, Isn't that up to me?

    Seems not.... It's all to do with funding!!!!

    Your doing the right thing seeing a doctor privately but if you need scans it's going to cost you thousands of pounds honey!

    They wont be able to tell you that you have PBC on the AMA alone, they wont tell you any more than you already know honey! You will need scans or a biopsy which will cost you, big time!

    I'm back to having that bloody cloud hanging over me again and honestly don't think I can be bothered with it all now..... My husband wants me to push them, so at least I have peace of mind..... but iv'e lost faith

    I hope you manage to find out one way or the other xxxx

  • Hi, both.

    Firstly, I feel it's important to tell you both that there are 3 aspects to PBC: symptoms, LFTs and cell change. ****These three aspects do not correlate.****

    It's important that you monitor all three: obviously, your symptoms (if nothing else, but for your own sanity) need to be monitored day to day. It is normal wthin PBC (with PBC generally being a long-term condition) to monitor bloods (LFTs: Liver Function Tests) every 6-12 months. Generally, we would look at scanning every 3-5 years.

    Again, each of these do not correlate but they are all important in terms of your care. It is common that people on URSO will find their LFTs will normalise. There seems to be a percentage not affected in this way by URSO, but generally speaking, this is the norm.

    The other thing to note is that AMA is 95% accurate as a diagnostic tool and AMA positive is generally considered to equal PBC. AMA plus raised LFTs or presenting symptoms take us to the 99.999% region.

    Granted, the only way to be 100% is biopsy. However, most people accept 99.9% is as good as 100% without biopsy (and for good reason).

    With regard to MRI technology. My understanding is that if there is little inflammation or even fibrosis that MRI won't really pick it up, as such. However, if there is considerable liver damage, then the MRI will show that clearer. There is a change in what the liver units see as appropriate and we are involved in that discussion. We shall let our membership know in due course.

    So, Hannah, my question is this: what is it you are trying to achieve?

    I don't mean this to challenge you, but I am a little unclear. Now, I understand that 3 months is too long to wait when you are seeking information. Have you been in touch with the Foundation? In PBC terms, 3 months is a moment. PBC is a slow condition to progress, in general terms. However, it would be good to find answers as quickly as possible, again if only for your sanity. The reason I say this is that I understand you wanting answers, but I would encourage you to be calm and refrain from worrying too much as those 3 months will usually mean very little in terms of your actual PBC.

    Skywalker, I need to correct a couple of things you said. As above, generally speaking... AMA is equivalent to PBC with very few exceptions. Secondly, LFTs are a measure of how efficiently your liver is working, not how much cell change there is.

    LFTs are a measure of compounds, proteins, etc in the liver at any given moment of any given day. The time of day the bloods are taken will affect the test results: as will time of last food intake, as will any hangover from a cold, ear infection, etc... Your consultant isn't interested in one count. They will be interested in many counts over many years to look at certain patterns.

    Again, your LFTs measure how efficiently your liver is working. It does not measure cell change. So, high LFTs do not tell us anything about cell change. Nor should one infer from raised LFTs that there is damage within the liver.

    Lastly, there are many many people with PBC who are assymptomatic and who have normal liver counts. Again, probably less frequently, it would still be good for them to be monitored.

    I hope this has helped in some way.

    Robert.

  • Hi, Robert,

    May I ask what can be done to those who has AMA positive and normal LFT? Im one of these people. I think what makes us anxiou is if there's anything we could do prior to symptoms really come out.

    Thanks,

    Xx

  • Hi Robert

    Thanks for your comprehensive response.

    I am not worried but I am frustrated with feeling unwell. Despite feeling rotten at times I still have to go to work (long hours 50 plus most weeks) and look after 2 children under 7. I have never been off sick before and dont intend to now but some days are very hard to get through because I feel terrible.

    In terms of what I am trying to achieve.

    Well, I am expecting to be told I have pbc on the basis of the positive ama, (despite

    my GP advising that I probably dont have pbc because LFTs and other tests are normal).

    So, I want

    A specialist opinion on whether i do or dont have pbc

    A decision on the need for a biopsy.

    If there is a need for biopsy then I want to be added to NHS waiting list straight away.

    To know whether the symptoms I have now are linked to pbc or something completely different.

    A view on pbc and nutrition as my low weight and bmi are concerning both me and my dietician. Is there an issue with malabsorption?

    Advice on the need to take medication, urso?

    An indication as to whether gall bladder op should be speeded up to help improve current wellbeing and take into account recent ama test results. It is due at xmas.

    If I can get answers on those I will feel satisfied, if you think the outcomes I am seeking seem unreasonable please let me know.

    My main goal is to feel well, less tired and to be a healthy weight and for that to happen as quickly as possible.

    Thanks

    Hannah

  • I understand why you are anxious as I felt the same last year but Robert is spot on, it is only the blink of an eye in terms of PBC so try to use the information he has given to reassure yourself.

    I was diagnosed PBC on blood tests and a scan alone as it was felt a biopsy was a risk to high in the early stages of PBC, when they already have a diagnosis.

    Hope you get the answers that you are seeking.

    Dink x

  • Hi hannah1973

    I was in a similar situation to yourself about 18 months ago. A variety of symptons with weight loss and and I could not comprehend the lack of urgency in the NHS system especially as there was a suspicion of cancer. I went private to gastroenterologists, endocrinologists, neurologists etc. I literally spent thousands (of my savings) on private blood tests, colonoscopy and scans without any definitive diagnosis until eventually a consulant suggested I may have chronic liver disease. He referred me to a hepatologist on the NHS. Still not understanding the lack of urgency, I made yet another private appointment to see a hepatologist! He kindly adviced me that I would not gain anything by not waiting for investigatons n the NHS. I took his advice, waited for my NHS appt. and for once stopped panicking and stopped throwing away my money.

    I just hope you are not wasting money as I did.

    I do have PBC but as Robert says it is a chronic condition. The compendium from the PBC foundation is a great source of information and reading it will clear your mind as to any concerns you wish to dscuss with the consultant.

  • Hi Hannah

    I can totally understand where you are coming from. Did you have the positive AMA test as a result of GP tests? Anyway, PBC has been mentioned to you somewhere along the line as a possible diagnosis and you've obviously read up on it.... So its only natural that any delay whether its a few days or a few months doesn't help when you are feeling anxious and just want to know for sure one way or the other.

    I had a positive AMA result from blood test carried out by a rheumatologist, he referred me to a gastroenterologist who told me straight away that I had PBC from the blood tests alone. I then had a liver biopsy to confirm the extent of the damage, a scan and MRI I understood (I may be wrong) was to confirm that it was contained within the liver.

    It will be £140.00 well spent for peace of mind. I paid privately to take my son to see a specialist once when he had a sporting knee injury. The specialist was able to tell him from examining him that it was a problem with his cruciate ligament but he needed to have an MRI. He told us the MRI would cost around £500 privately but he could put us on his NHS list for the MRI which would take about 6 weeks. We opted for the NHS list and true to his word he had the MRI. The next appointment we had was under the NHS for the results, so basically we cut out the wait for the first NHS appointment.

    Just a thought.. do you have a copy of your positive AMA result to take with you to your appointment. It that may be useful as least the specialist will have that to look at. Otherwise you may have to wait on bloods done for him before he can give you a diagnosis. You are doing the right thing writing down all your symptoms and questions before you go because with all the will in the world your guaranteed to forget something on the day.

    All the best for your appointment

  • It appears that this blog has started some debate but for me you have hit the nail on the head. I am cutting out the wait for the first NHS appointment by going private, there is nothing stopping me from taking up NHS tests following this.

    The positive AMA test was done in August and I have it in writing from my GP. Having read more on the subject in the last few days I am expecting the consultant to say I have PBC based on the positive AMA, I am also expecting him to put me on an NHS list for a biopsy but also wonder if this might wait as I am due to have gall bladder removed in December. I dont know if I will be prescribed any meds will have to see, but hey if I am, better to have them now rather than in several months time when I might feel worse than I do now.

    I think I will proceed with the appointment, when you work long hours and have young children, not to mention christmas is on its way, it is important to feel well or even that you are on the right road to being well, right now im not well and somewhat in limbo and for me this really has to change.

    Thanks for your advice, it helped alot

    Hannah

  • Hi Hannah

    You sound as if you may be having doubts about keeping your appointment...You made your private appointment because thats what you believed was the best decision for you for your own peace of mind, so don't let others views sway you now.

    Not all consultants insist on a biopsy. It seems to differ from consultant to consultant and health authority to health authority. If they do decide on a biopsy it would make sense to do it at the same time as dealing with your gall bladder. I had my biopsy within a month of having the initial diagnosis....we're nearly in October now so its not too much longer to wait...but at least during that 2 months you would have seen your specialist and you won't be in limbo anymore.

    The biopsy was done under local anaesthetic. I had to lie flat for 4 hours in the hospital and was told to take it easy for the next couple of days. The procedure wasn't the most pleasant or comfortable experience to have... I would be fibbing if I said otherwise...but its not too bad and only takes about 15 minutes.

    I was prescribed the URSO by the consultant after I had my biopsy. I initially saw his registrar who told me I had PBC and ordered the biopsy, I didn't see the actual consultant until I went for the results..but that could be the way they work in our authority.

    All the very best for your appointment and let us know how you get on. You'll be in my thoughts

    Cheryl

  • Hi

    Everyone

    The feedback offered on this post have certainly helped me! Especially Roberts post!

    Hannah don't waste your money going private, it is only a moment in the progression of PBC, and that's IF you develop it... It takes decades!!

    Nothing will happen to you whilst your waiting.

    I think I'm letting go of all my worrying and looking for something that might not even develop!

    I will have my blood checked annually and what will be will be!

    Thankyou ladie's also for your support as usual.

    Please try not to worry too much Hannah xxx

  • Hello hannah73.

    It is of no surprise the time wait you may have NHS.

    I had to wait, well think it was a count of 11wks to get a first appt at the hospital in 2010. It then took another 2mths to get results that were relayed via the GP to tell m e I had positive for AMAs and that the hosp doctor was diagnosing PBC with repeat abnormal LFTs and GGT plus I believe one of the bone (think albumin without checking) that is deemed normal with PBC to be a bit abnormal. I had a scan prior to seeing the hospital doctor.

    I know the AMA test isn't one that can be done that quickly apparently like routine bloods for red cells, etc. so that adds a bit more time.

    I do think it is a bit appalling that in the yr 2012 and in the computer age information seems to still take overly-long to be relayed back to a patient. I noticed on my letter to the GP from the hospital doctor informing him I had PBC in 2010, that letter wasn't dated overly-recent, it was the time it had taken for the GP to respond and also the admin staff at the surgery to contact me (they phoned) and then chose to give me an appt that was 5 days later to see the GP for me to be told!!!

    17th Sept I had repeat bloods and got print out 2 days later and noticed I had missing liver and bone. The GP sent me a note sayng to make an appt to discuss the bloods and it was fine for a tel appt. The earliest I could get was 24th and then GP rang me over an hr later than the allotted time and until I asked he hadn't noticed that some of the repeat had recently been missed so now I have to go in again for those. He wasn't concerned about the PBC as that seems to be stable but it was to do within the HB count, one point below the normal range as has been for 6mths now and he wants the FBC and also iron, Vit B12 and folate done when I go for the ones missed recently.

  • Hannah

    Please let us know how your appointment goes. I was like you and could not wait to talk to a specialist so I could get all my questions answered. However, I found that the specialist was uncaring and lacking in knowlege about PBC.

    All the best to you.

  • I am in a very similar situation, but i have other multiple autoimmune problems (scleroderma, hypothyroidism and secondary sjogrens) I have vit d deficiency, anemia, elevated ESR, am AMA and IGm positive (PBC) and now have been told i have no toe joint (osteoarthritus painful to walk). On top of this i am starting early menopause. I am very low. No one takes any notice of the PBC despite my rheumatologist telling me that a lot of my probs are probably to do with it. But no one can really tell what is causing what. I work full time in a very demanding job, and its getting to the stage where i need to look for part time work. I feel very frustrated and have got depression and nothing is being done about the PBC and i am not on treatment as my LFT's are normal. Moan over! Feel a bit better now!!!

  • WOW!! What a thread this has become!! Well done, all, and thank you. I think this will be enormously helpful for others to read, too.

    There are a few things I would like to address. I will be jumping about but I shall try to address everything in order that I find it above...

    @zhupa: our preference is that everyone with PBC is given URSO. The way PBC works, bile collects in the liver; damages the small bile ducts, allowing bile to collect, which creates damage, which colletcs bile, which creates damage (I did put a more detailed description on here fairly recently, I think).

    Urso, is designed to flush the bile from the liver. So, irrespective of time of diagnosis, symptoms (or non), raised LFTs (or not) or liver damage (or not) {you did see my comment about these facets not correlating, I hope} URSO still does a job. It's important to know URSO is not designed to alleviate symptoms. However, it is common for urso to normalise LFTs. Again, a detailed description of this was posted recently.

    So, URSO for PBC is generally good. it's the only drug that addresses PBC itself, for all there are others that address some of the symptoms.

    @Hannah:

    1) It is not uncommon at all for people diagnosed with PBC to improve in time. They come to terms with the condition; them make better decisions in terms of self-management; they are better informed; the fear (generated by lack of knowledge) is dissipated.

    2) If your secialist is worth his salt, then he will diagnose you with PBC. If he does not, you will need a more informed specialist.

    3) The decision for a need for biopsy is yours, not your consultants. Again, I ask what information are you trying to gain? Is there a better (less risky) way to gain that information? is that information *really* necessary?

    4) A quick glane at your compendium (assuming you are a member) will tell you the symptoms of PBC. However, if someone has multiple autoimmune conditions, then there will be difficulty pinning down which symptoms are attributable to which condition (fatigue can be caused by thyroid, etc). So, where the symtoms come from might not be as important as how to address them.

    5) PBC and diet is a strange one. The key is listening to your body. Make a diary of what you eat, how you eat and what your body does. This will guise you in temrs of any malabsorbtion, any negative reaction, etc. You *may* find your body will be intolerant to some foods: you may not. Listening to your body is key. As is good water intake and eating little and often.

    Hopefully, URSO has been covered.

    7) The key to feeling well, to gaining weight, to alleviating symptoms is self management: making better decisions for you: mentally, emotionally, physically. If you are a member you will have access to the members' ages on the website where we have video clips, etc for your information. They are very much worth a watch...

    @inkedup. The autoimmune conditions you mention make an impressive list!! ;)

    As alluded to above, it would be difficult to know where each symptom is coming from. What I would say is the general thinking is that your immune system is causing each condition. Technically, PBC is an autoimmune condition which affects the liver. Hypothyroidism is an autoimmune conditon which affects the thyroid. Sjogren's Syndrome is an autoimmune condition which affects glands around the body. (that can cause vaginal dryness as well as eyes and mouth) It is not thought that any one autoimmune condition causes another... each condition is caused by your immune system.

    So, your thyroid doesn't cause your Sjogren's. Or your PBC doesn't cause your Hypothyroidism, etc, etc. I hope that makes sense.

    Again, it is not unusual for recent diagnosees to walk through a tunnel. But it is one many have walked through. the key is to focus on the light and to keep walking. Read your compendium, read your Bear Facts and you will read testament after testament of people who have come through the tunnel. You can, too.

    As ever, our helpline is open.

    Yours,

    Robert.

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