New here and feeling uninformed by my GP

I have just been diagnosed with PBC and have been reading through comments and suggestions. My GP has told me nothing and I have no idea what my blood test results indicate. I did not realise there were 4 stages! I will now arm myself with appropriate questions and get back to my GP, so thanks all. Never heard of PBC before so had no idea what was going on.

I have a lot of joint pain (some periods of itchy skin/scalp) and have been to GP about it several times in recent years. I was getting so tired and feeling unwell, thought some of it was down to IBS. Being a female, now in my early fifties a lot of the PBC symptoms seem to cross over into menopausal symptoms so that has not helped with diagnosis. The liver function issue was picked up when I had blood tests to check hormones etc.

I have been prescribed Urso 4 x 250mg per day, follow up blood test in 6 months to check progress. The leaflet with the medication says monthly blood tests in the first 3 months, so I will take this up with GP also. Not having any major side effects of the Urso, except almost everything tastes awful and scalp a bit itchy.

35 Replies

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  • Just how i was diagnosed . Rubbish. just be warned most doctors know nothing about PBC. The specialists do.

  • It is a bit rubbish! It has taken since March this year to get this far. I have seen a Gastro consultant - basically advise was take the pills (forever) and getting to see my GP is a nightmare - currently no routine appointments until late JANUARY 2017!

    The hospital runs an online booking system. They have to see you within 18 weeks of referral from GP- to make sure they keep their targets (on paper) they don't release appointments until they CAN book you in 18 weeks later, took me 3 weeks to get an online appointment then 18 week wait. I am glad I found this website.

  • Hello fred6577.

    Back in early 2010 I started itching intensely. 2 weeks later and no let up I visited my GP. He asked me questions and thought maybe allergy (I didn't). Meanwhile he said he'd undertake blood tests. Would have thought he could have done there and then whilst he was talking but no, had to make a further appt which was over a week later with a nurse and then that was another week of itching that went by. My LFTs came back higher than normal and from there I was having different blood checks done and one was to determine if bone or liver related as you can have higher LFTs (liver function test) with bone issues too. He said the blood test had come back liver and was wanting me to go for a scan at local hospital. I got the paperwork and made my own appt via that Choose & Book. The appt didn't come round for several weeks! On the day I was informed I would have to see my GP about 2 weeks later. By this time it was late July and I was still itching and the LFTs were still rising.

    My GP decided after the scan to refer to outpatients after he undertook a final blood test (for Wilson's Disease - copper overload) and August I was with an appt for Hepatology dept at local hospital. The earliest appt I could get was November. The hospital then cancelled the first, so it was then another fortnight later. Took 13 weeks for the appt to come round from referral by a GP. I didn't find out I had PBC until early December (2010) and all those months I was itching badly and had to endure.

    I think it is worth noting that if the LFTs were appalling high then I expect I'd have been seen by a doctor sooner. I think for some of us due to PBC being said to be slow progressive (in most cases it seems, some are not so lucky) then it seems that there is no rush regarding the medical profession.

    I know when I finally saw the consultant he asked me questions, went through the scan (said everything looked normal, said he could even make out clear bile ducts) and then said he'd do antibodies checks that day. After diagnosis he stated that he reckoned I'd only had the PBC a few yrs.

    I know the appt you have got seems a long way off fred6577 but meanwhile if you are taking the urso as you stated you were prescribed then in the time that is going to pass your LFTs should have altered. I didn't have bloods taken the following month after starting on the urso. I had mine done on my 2nd hospital appt (the GP was informed by consultant to inform me I had PBC and prescribe the urso before I saw him again), it would have been around 10 weeks on from starting urso.

    If you check out liver north website you can request a free dvd they will send to you, it is all about PBC.

    livernorth.org.uk/

  • It's cuz there's no immediate urgency with such a slowly progressing disease, you are more likely to die of something else than liver failure, especially if you take care of it

  • I'm glad you did too.. Lots of your worries and your hand wringing will ease.

  • Hi fred6577. I was just diagnosed this year too but my doctor was really on the ball and referred me to the specialist team in Kings College Hospital in London (nearest unit for me). They started me on Urso in July and wanted to check my bloods in October so I guess 3 months is pretty normal. Some on the site have indicated that it took a year to see any sustained improvement.

    I've been lucky as my bloods were only slightly out of the normal range except for Ggt (now back in line). I had to postpone my October appointment (family bereavement ) so got my doctor to run the tests pending my new date on 5th December . Didn't want to wait as we head off on our travels on the 8th Dec for 3 months so wanted to speed up things to avoid delays in getting a fresh prescription .

    I haven't had any major symptoms (just tiredness) and seem to have got off without lasting side effects too (mild bowel activity at start)...hopefully !

    Like you I'm sort of a textbook case ie female, mid fifties and have an underactive thyroid too. Here's hoping progress of the PBC is as glacial as many experience.

    Best of luck and wishes . Adele

  • Thanks Adele - I need to find out exactly what my blood tests have indicated - phone calls saying "worse than last time" won't do any more! My symptoms have got worse over the last month. but hopefully now things will improve - at least I can now see that it is probably going to take a while. Thanks again ...

  • Hello. I am yet another early 50's female ,diagnosed a month ago accidentally! Very tired but so far no other symptoms. Still waiting for appointment at my local hospital. Am seeing naturopath in the meantime who thinks this auto immune response is triggered by something in my diet He sent me for very specific tests to identify what it is...results due in about a week. In theory if I then totally eliminate this/these it should slow progress right down. We shall see! I'd love to meet anyone else with PCB in Guildford area....

  • Hi - I am going to be looking into my diet now and would like to hear how you get on. No advise from Consultant or GP, but I can see there is a lot of information out there - hope all goes well

  • Hello fred6577.

    I did ask re diet pre diagnosis and post diagnosis of PBC when I was with the consultant. He had asked me dietary questions, did I smoke (never), etc on my first consultation. He said to just continue as normal.

    As far as I can read (British Liver Trust have leaflets you can download online on PBC and also diet with liver issues) unless you have got to a cirrhotic stage with PBC then a normal diet is fine.

    Personally from experience and a bit of experimenting myself over the last 6yrs I would say that nothing seems to change anything. I'll just continue as normal. I don't eat much in the way of fried foods but we do need some fat in the diet for those fat soluble vitamins that we can lack with PBC. I do have an abundance of fruit and vegetables and cereals too.

  • Hello Sallyofthevalley.

    I was only 45 when I started to itch early 2010. I was 46 by the time I was diagnosed with PBC December 2010. I was still having a menstrual cycle (not quite completed the menopause as yet and I am not far off being 53 now). I'd no other no known health issues at the time and apart from still itching with PBC (less intense than it was in 2010) I'm not doing so bad. I feel I've slowed down a bit since 2010 but fatigue I did have during 2010 that vanished at some point in 2011 hasn't actually resurfaced in my case. I do get tired some afternoons due to broken sleep most nights through itching.

  • Ask to be referred to gastroenterologist at your local hospital 😊

  • Hi there and thanks - been to see a consultant who prescribed the Urso. I decided NOT to go online before seeing the consultant - this was a dumb move - I had no idea what the diagnosis would be - I should have been better prepared for the appointment. I usually am, however you know they get annoyed as soon as you say "well I did google it and...." - a mistake I won't be making again....

  • I first saw PBC in a medical textbook in the local library. I never mentioned to my GP as I didn't want to diagnose myself plus I also thought that if the itching stopped it was nothing really. If I didn't itch now I'd not know I had PBC.

    I only tend to use reputable sites like PBC Foundation, jLiver North and British Liver Trust and of course in the UK there is our NHS ones. There can be a lot of false information out there and also some scary stuff that we do not know is true or not.

  • I'm no better..... worked in NHS and accessed blood results before seeing gp and scared myself shitless lol 😂

  • You have a 'right' to have copies of all results and letters, so ask at your GP's reception. Recent ones could be free, but there may be a (hefty?) charge for older ones - so ask how much.

    If you have not already talked to the advisors at the 'PBC Foundation' (they host this site on 'Health Unlocked') then do so - link at the top of the page. Here you will find phone and email links to their advisors, so you can run your results, questions and fears past them. There is also a host of info and advice on their site, and if you join - it's free - you get a useful compendium on PBC (maybe get one for your GP too) and a quarterly magazine.

    Much of what is online is out-of-date and overly scary, so best to ignore that, but at the same time, PBC is a condition where it's best to become your own 'best expert', so reading research papers will help - though you will get loads of help on here, as well as from the 'PBC F'. People on here often post links to 'papers' and news items that are relevant.

    Finally, I would personally prefer to see an actual liver specialist (hepatolgist) rather than a general gastro - and maybe even one who specialises in PBC - as so many people know little about PBC (it is quite rare, and my GP admitted he had never treated anyone with it). You have a 'right' to see any specialist in the UK, so if you find a PBC person near you, you could ask to be referred - might even be quicker than what you are currently experiencing.

    I must admit I'm in shock to hear about your waiting times. My (Devon) GP practice usually sees me in a day or two - and they always keep 'emergency' slots free every day. (Maybe it's the upside of living at least an hour's drive from the nearest A&E!) However, you could ask to see another GP in the practice if you are not happy with the one you are seeing - you don't have to stay with the one who is your named GP.

    Hope this helps.

    NB They should also check for many other autoimmune conditions that produce similar blood results, as well as checking for conditions that are also related to having AMAs (antimitochondrial antibodies - which I'm assuming you have, as well as the liver bloods being abnormal). They should also have ruled out other liver conditions, and yes, should monitor bloods for 6 months, then maybe twice yearly, then annually if you're stable and don't notice changes. NB 'PBC F' has loads of info on diet, etc.

    Take care.

  • Thanks for your comments - I will be doing some serious research

  • don't say I googled it say you are researching it for your own reference through the various PBC organisations throughout the world, it sounds better, they think of google being akin to ebay, it's a great pity some of them don't google it, they may learn something.

  • Good point!

  • When I see posts for newly diagnosed people, I routinely reply citing the experience of my son, who although not having PBC, does have PSC (Primary Sclerosing Colangitis), a very similar liver condition that is also thought to be of an auto immune nature. He has been successful in using diet, vitamins/supplements and most importantly Low Dose Naltrexone (LDN) to return to a normal condition. All his liver function values have returned to normal for about 1.5 years now, and all his inflammation markers are normal as well, and he is symptom free. Go the the LDN Foundation web site; read their materials and links to Dudley Delaney's web site and blog; and Google Dr. Burton Berkson and watch videos about him, particularly his 2009 presentation at a National Institute of Health conference, and also read his books on LDN, Alpha Lipoic Acid and B-Vitamins, (related diet strategies) and you will find his regimen of vitamin/supplements that improve your immune system, and the method of action of these items to help your body's immune system return to normal. Gluten and dairy free diet can help to reduce leaky gut and related intestinal irregularities that are typically at the root cause of many auto immune conditions. Some people also believe that a non-GMO diet will also help. Join the Yahoo LDN User Group and you will receive emails from LDN users and questions from inquirers about the application of this inexpensive and low risk/side effect drug in addressing a range of auto immune conditions and returning your body's immune system to normal or more normal condition. Many doctors do not know about LDN, or, since it is used "off label" for auto immune conditions, will not prescribe it, so do not be surprised if you get a negative reaction from your doctors. Find one who is LDN knowledgeable, or search the above resources about its availability not through your current doctor.

    It takes a lot of time and effort to do the research and investigation, but with main stream medicine offering very little help to halt the progression of many these auto immune diseases, I believe the above items offer a reasonable and low risk strategy to address auto immune conditions. You can contact me if you have any questions, and I will try to point you in the direction of resources that will help to answer them.

    Warren

  • Thanks for your comments, very helpful - I will be researching - my Mum had an issue with her immune system - no proper diagnosis but it attacked her lungs until they just stopped working - spent the last year of her life on permanent oxygen and a bucket full of pills every day. I did a lot of research then as I felt I had to keep a close eye on the meds, and the side effects etc. Thanks again :)

  • Hi It was my understanding that LDN was not licensed in the UK for this type of use? If your GP prescribes it, he/she must be very forward thinking, but I don't know how they can do that on the NHS? Which area are you in please?

  • I am in the US, not the UK. Naltrexone was originally approved as an opiate antagonist, which means it blocks the effects of opiods. It was used originally to wean opiate drug addicts off opiates (doses of 50 to 200 mg/day), but this drug basically lost out to methadone in the long run. While using it however to get heroin addicts off drugs, many of which were AIDS patients as well, Dr. Bahari in NYC noticed that the AIDS patients using naltrexone did better than other AIDS patients. He experimented with lower and lower doses of naltrexone until he came to discover that at between 3 and 4.5 mg/day (low dose naltrexone or LDN), those immune deficient AIDS patients had their immune system re-regulated, and had even better survival rates. Dr. Bahari then started using it for other auto immune conditions, and the rest is history.

    So naltrexone is only formally approved in the US for substance abusers. However, because of Dr. Bahari's and others research, it became used more often "off label" for auto immune conditions. It is generally prescribed off label in the US through compounding pharmacies, where the pill dosage is prescribed by the physician. I don't know what the situation is in the UK regarding its approval and regulated use, however, if you can't get it through your doctor or pharmacy, then you would have to look into getting it without a prescription from other sources, such as outside the country. While my doctor in the US was willing to prescribe it for my son, I found it even cheaper to purchase full dose (50mg capsules and dissolve it in water and take 3 mg/day using a dropper) from United Pharmacies in the UK, but it was shipped to me from Hong Kong. The cost for monthly LDN pills from a compounding pharmacy can run about $30 to $40/month, but by purchasing 50mg capsules at about $2-$3/pill, you can reduce your monthly cost to about $5 or so by making your own low dose. You can purchase it on line from several countries such as India, Thailand, Israel and others. I read a statistic from a few years ago that over 40,000 people are using LDN for a wide range of auto immune conditions. As organizations such as the LDN Research Trust and others have become more popular and have expanded their outreach, I am sure that figure is now much larger.

    If you have an auto immune condition for which there is no cure from mainstream medicine; or for which limited or oftentimes ineffective treatment methods predominate, then many people take charge of their treatment strategy themselves, and look to alternative therapies and treatment strategies as either primary or secondary methods of treatment. In my son's case, PSC has no cure or treatment method that can halt its progrssion, so his doctor and I agreed that a strategy of diet, vitamins/supplements, and LDN offered the best opportunity to control his condition, and return his immune system to normal levels........which it has done! You need to make these types of decisions yourself, and I urge you to do the research necessary to make an informed decision.

    Warren

  • Thank you Warren very interesting. I found LDN.org UK website and there is lots of info on there. Facts sheets I can take to my GP and emails of an online chemist that will honour prescriptions, maybe on the National Health Service or private. I happen to have aconsulation with my Gastro specialist in 2 weeks so will discuss with him if he would support my decision to take LDN?

  • Hi , just thought I'd but in and let you know of my experience with low dose naltrexone, I was prescribed this a few years ago for the itch caused by pbc, I had to spend 5 days in hospital as it was administered in tiny amounts and gradually increased over the 5 days , unfortunately for me it wasn't successful, I'm in scotland and attend the liver unit at Glasgow royal , good luck 💜

  • How long did you trial it for? Why did they keep you in for 5 days?

  • Hi , again I was kept in because it was started in very small amounts via injections gradually it was built up slowly over the 5 days until it was at an amount that I could take via tablet form , I was on it for a while and it did make a difference , I'm sorry I can't remember precisely why I was taken off it but I think it was decided that the risks taking it were greater than the benefits , can I ask why you consider this treatment is it for relief of the itch ?

  • My advice is to find a source of information and advice that you trust (for me it's the PBC Foundation/Consultant) and go with what they tell you. There is so much conflicting advice on the internet etc that at times it makes your head spin! As for which type of consultant you see - it doesn't matter as long as they are experts in PBC! My GP doesn't seem to know much about the condition but another GP I spoke to has quite a few patients with it so knew much more, luck of the draw it seems, more GP education needed. Good luck and as good health as possible xx

  • Hi friends- I have autoimmune Hepatitus and stage 2 live disease- my flares are triggered by cigarette smoke- even if someone who smokes comes in with it on their hair and clothes. My family are chain smokers and I absolutely can't be around them even if they don't smoke around me. Anyone else have this issue?

  • If you are like me, you'll be symptomatic. Take extra good care of your skin and diet. Avoid meat, alcohol, oil and stress. Exercise, do yoga. Only 1 glass alcohol per week. Find a hepatologist who specializes in Pbc. High liver enzymes APH, ATL, AST are part of liver damage, doctor will want to lower them with extra drugs like Fenofibrate ( I reacted to this with flu symptoms) or a new drug Ocaliva. I start taking Ocaliva in 2 weeks. I'm studying whether auyrvedic medicine can help. So far I'm ok with heightened health awareness and care.

    Janet

  • I meant to say if you are like me you'll be A symptomatic, you won't have any symptoms

  • I have PBC stage 2 feeling better since starting URSO in May. I had many symptoms and was seeing a gastroenterologist for a couple of years, going downhill fast she told me I had IBS the catch all diagnosis if they don't know what you have. I referred myself to a liver doctor because the area where the liver sits in the right upper quadrant hurt consistently during the time I was being seen for IBS. Hang in there get copies of all your tests stay vigilant in your care. Let us know how things go , good luck ....

  • It amazes me how things differ around the country. I was diagnosed at the hospital, at the liver clinic, which I attend every 6 months, I have never seen my GP about my condition - apart from when he referred me 13 years ago!!!

  • I finally got a meld score by insisting on a fibroscan. It gives you some idea of the seriousness of your liver condition at that time. It relieved my mind and that's worth a lot.

  • I have a similar experience and am in late 50s. Interesting about the mild scalp itch .Same here but only after beginning Urso a few weeks ago. I read the same 're blood tests and have been told I should have 2 over next 6months before a scan. Thanks for sharing your info .I hope symptoms improve for you.

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