Questions for Gp - newly diagnosed - PBC Foundation

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Questions for Gp - newly diagnosed



Diagnosed with pbc within last two weeks. Had gall bladder removed in March 2016, and blood tests pre and prior to op have identified condition. Have discovered the pbc foundation so have joined as member today. Consultant who gave diagnosis very matter of fact prescribed Ursofalk 3 times a day which I have started taking. I am guessing that I have had this condition undiagnosed for a while. Not feeling too great and wondered if anyone could advise me of really good questions to ask Gp on Monday so that I can start to get my head around things. I work full time in a stressful occupation and I had assumed exhaustion was due to stress and workload. Any advice or suggestions would be great appreciated, as still reeling from diagnosis

20 Replies

Hello jemlola.

You will more than likely find that your GP doesn't know overly-much about PBC. New to the 3 GPs I have been registered with since pre-diagnosis December 2010. They can however read the LFTs (liver function test) bloods.

To be truthful I've never really asked my GPs much since being diagnosed. The GP I saw for 6 months pre-diagnosis he did various blood checks to rule this and that out (I started to itch early 2010) and after I had a scan at hospital (showed liver and surrounding organs pretty much normal, the hospital consultant said on my first visit to him start of November 2010 that he could see clear bile ducts), he referred me to Hepatology Dept. I had antibodies checks when I first went to hospital as I'd rising LFTs and also itching and at the time fatigue (I still itch, it has changed over time with urso, fatigue vanished at some point during 2011). He sent his diagnosis to my GP who than asked me to go in and he was advised what mgs of urso to presribe to me, the GP gave me the diagnosis. I returned to hospital 2mths later for my first bloods post-diagnosis.

There is a good site as well as PBC Foundation also in the UK. That is Liver North in Newcastle. They can send you free of charge the dvd they supply on PBC. I got mine several yrs ago. I've posted the site and you just fill out your details. On their site is also back newsletters you can have a browse through. They also cover a lot of PBC in them. British Liver Trust site also has a leaflet you can download all about PBC too and various other publications.

jemlola in reply to Hidden

Hello Peridot

Thank you for replying to my post. I am so glad that I stumbled on this site, as there is a lot of information from people who have the condition and are able to share their experience of it. I have had a bit of a wake up call, as I think I have been feeling not that great for a while. With being 48, I had attributed some of my symptoms to hormonal changes and just getting older and the pace of everyday life. I was diagnosed with gall stones and an inflamed gall bladder in November 2015 after my blood test identified jaundice which the Gp took to be caused by an obstruction. After the diagnosis I was very careful about what I ate, and I think gradually my appetite has become poor. I have lost weight but I think this is attributable to reduction in what I eat. I did initially feel much better after my op in March 2016, but was on sick leave and returned to my full-time post intially on a phased return. I have been back full-time since June and had just thought that the stress of the job was making me feel tired.

I have started with the Ursofalk, I am not great with taking medication. So I guess I am hypervigilant to any new symptom. The Consultant I saw recently organised a whole heap of blood tests so I am hoping the Gp will have these and any other advice that the Consultant recommends. I also have an appointment for a bone density scan in August.

I am going to request a referral to a dietician as since my gall bladder was removed I often feel nauseous. The tablets also appear to be giving me some abdominal discomfort. So my brain does not even seem to get the message that I am hungry anymore. I know that looking after myself particularly around eating healtby is a priority.

Thanks for advising me about and giving me the link for livernorth, I have just had a quick look at it. There seems to be lots there for me to look through.

I am thinking I might take some time off work to get use to the medication and just get my head around this stuff. My work is very busy and there is little or no time to reflect. I wondered what your thoughts are. as to whether this is a good idea?

Once again thank you for your advice, I felt really tearful and scared yesterday. I have a family and I have just been finding it quite difficult to just carry on as normal.

Hidden in reply to jemlola

Hello again jemlola.

I was working full-time back in 2010 when I started itching. At the time I was solo as an acting shop manager and had to step up to full-time when my colleague went off sick for 6 months. With no other shops to cover (the small shops are nationwide) I was working for endless days with just Sunday off some weeks.

I was found not to have any problems in 2010 with my gallbladder when I had the ultrasound scan. I did however show a raised cholesterol which can be significant of PBC. The consultant wasn't concerned at all about this.

I was fortunate that my husband decided when we managed to take a holiday after I had worked pretty much for over 7 months without a break I should quit the job on my return. Much discussion followed and I did quit. Though I am reluctant to admit it back in 2010 I was a bit of a weary wreck! I am also fortunate that prior to 2008 I had been a widow for many years and keep a private pension from my former late husband for life. So I do have a small monthly income of my own (that was the bane of my working life as it was taxable).

I like yourself am not great taking medications never being a frequent user pre-2010. I still hate the fact I will more than likely be on the urso for life unless some other med comes along to supersede it.

I was 45 when I started to itch and at the time of diagnosis 46. I attributed fatigue in 2010 as the job and didn't think it would be a sympton of PBC. It was the doctor who said I had fatigue as I never thought much of it, the itch was a different thing altogether.

I miss not working and went back to the voluntary sector that I had fitted in-between paid employment previously. I keep busy though over time I have been finding that I have slowed down a bit. Then again I am now 52 and still going through the menopause that seems to be spanning it out in my case. I hate the fact of this PBC that due to itching late at night and during the early hours of the morning (until around 6a.m) it causes me to have broken sleep and then that rolls over to the following day where I start to feel tired later afternoon.

I had a bit of bloating and heartburn when I first started taking the urso. I was taking mine with breakfast and then around 9p.m. i did start to feel constipated so re-adjusted my diet and that's been sorted since. Some can experience diarrhoea with urso. I thought the itch got worse for awhile but after some months it all settled.

jemlola in reply to Hidden

Hi Peridot

Thanks for sharing your experience of working full-time and having the condition. I work in the voluntary sector so we are always short of funding, too much to do and not enough people to do it. I have just been out for a walk and feel much better for just getting out and about.

I think I probably need to really concentrate on eating well, as I think I sometimes do not have enough in me to cope with taking medication. Currently I am just experiencing uncomfortable bloating feeling and overwhelming tiredness. Think I need to stop pushing myself on when I feel tired.

I have some time off scheduled for the end of this next week, might look into taking the whole week. The itching I am currently experiencing is more like a prickly type of itch. I understand that looking after your skin is important to avoid dryness.

Thank you for your kind advice, I feel a bit calmer and ready to start trying to give myself the best chance to cope with this

Hidden in reply to jemlola

Hello once more jemlola.

I did ask pre-diagnosis and post-diagnosis re diet. The consultant just said to me to eat as I'd been doing.

My thinking here with PBC is that we need bile to break up fats and the urso can aid that due to what is now considered a compromised biliary system so I do try to have less fat in the diet. I was never partial to fast foods, fried foods nor a lot of cheese products before 2010 so for me it isn't that much of a problem.

I try to eat as more natural as possible with less additives and I don't partake of artificial sweeteners if aat all possible (never really did before anyway).

I've always been a big fruit and veg consumer so for me I've no problem still eating thesein frequent measures either. I do like to think that despite having this PBC I might just be able to keep myself pretty healthy and it might just count for something. I also think that if we get our diet pretty much balanced perhaps we might feel more energetic in the long run.

jemlola in reply to Hidden

Hi Peridot

My appetite has been really affected since I started to have a problem with my gall bladder. I work full-time in a very busy environment and often end up doing extra hours, it has been easy to forget to eat enough and enough of the right things.

Thanks for your advice, my gp has given me a bit of time to get organised and to get into a proper routine with meals and medication. I also have a referral to a dietician which will hopefully clarify anything I need to know.

I agree I am sure eating and doing things that boost our energy can only be beneficial in helping us to live well with it.

Hidden in reply to jemlola

Hello once more jemlola.

It is actually said that eating little and often in PBC is a sensible option, especially for some who can feel nauseous (apparently this can be a sympton with PBC).

I found quite some years ago that I simply just cut back naturally with eating. I started to find that I could eat like a horse early in the day but then as the afternoon wore on I tapered off. I still find this nowadays and if I find that a certain time has lapsed and I've not had the evening meal I just don't feel hungry. In this case I do have a little to eat as I find the full-blown itch is with me around 11p.m. and then I fidget a lot so burn energy off a lot more than likely.

I find eating calorie-rich food a good thing (I started in the last couple years to just throw a chopped banana into a large jug with milk to fill a small glass and then use a hand blender to make fresh milkshake). I also think quality outweighs quantity.

For many many years I have tended to have an apple or small orange or banana and even tiny bag of dried raisins in my bag for when I am out and about. I did read that apple can stave off indigestion and heartburn and I have to say that odd times I get heartburn I do find chopping an apple up (don't take skin off) and munching that slowly does actually fix it.

jemlola in reply to Hidden

Hi Peridot

Funny you should say that about apples. I have recently starting carrying an apple with me to work. Interesting about the heartburn will check and see if that is the case for me.

Little and often sounds like a good idea. Like you said I think I have unconsciously moved away from having larger meals and certain foods. I agree quite often when it has gone beyond a certain time I can quite easily not bother to eat.

My gp has given me some time off from work which I am going to use to get organised and get into a good routine with eating and taking meds. It will be easier to start this without pressure of work. The banana milkshake sounds lovely I think I may invest in a juicer/blender.

Once again thank you for your support and excellent suggestions

Hi Jemlola,

Sorry you are having to go through all this, but good that it's finally been diagnosed. As Peridot says, you may find your GP does not know much about PBC. I was lucky, while my old GP (retired last year) had never encountered it before, he was scrupulous in getting up-to-date - but then the risk had already been diagnosed years before, so he was not meeting just the symptoms or AMA test first-hand ; while my new-to-me GP in the practice has patients with it, and was previously very familiar with it.

I would join the PBC Foundation (it's free) , as that will give you access to more info on their site, and they will send you their wonderful 'PBC Handbook' (you could even give your GP a copy if s/he is a PBC-virgin). Otherwise, I would carry on reading on this site - but remember: PBC is an incredibly variable and varied condition, and almost everyone has very different experiences of it, and are affected in many different ways. The BLT is good too, and their DVD will help. Also, phone up the PBC Foundation and talk to their trained advisors, they should be able to advise you on questions to ask your GP, as well as probably answering many themselves. One important thing will be to check that your Urso dose is correct - it's based on your weight, so always worth checking you have not been given too much or too little. Plus, there will be advice on when it's best to take the tabs, altogether or not, with food or not - a lot of it seems to be different too. Also worth asking your GP for a printout of all test results, scan results, letters from the consultant etc. As PBC is so rare, and so variable, sufferers often have to become their own best expert.

You might also want to put another post on here, saying (vaguely) where you live, to see if there's anyone near you with PBC. The PBC F has groups in most parts of the country, as well as there being some informal groups - there's a Facebook Group too NB remember, people on this site are from all around the world, so sometimes the advice (eg brands of Urso to take) will vary with country - always check where folk are from. Also, I would place any posts on here in the week, as traffic drops at weekends, and there can be few responses.

Finally, you might want to ask (on here, and your GP) about good consultants near where you live. A lot of people see gastroenterologists, while I would always recommend seeing a liver specialist (hepatologist) and checking that they deal with PBC. I eventually asked to be referred to a leading PBC specialist, as it turned out I had been incorrectly diagnosed.

Hope this helps, diet, exercise and having fun are also things to bear in mind, once you've got the main questions out of the way. So ... for now, avoid stress - I know it's easier said than done, but have fun, treat and coddle yourself, and do things you love!! Stress is the worst thing for any automimmune condition, and may play a big role in the fatigue response: so have fun!

Take care.

jemlola in reply to GrittyReads

Hi GrittyReads

Thank you for replying to my post. I will be taking your advice about asking for the test results, scan results, letters from the consultant.

I will also ring the Pbc foundation helpline before my appointment and for advice on taking the medication. Spoke to a locum gp last week other than asking if I had flu-like symptoms and taking an urine sample, appeared to be unable to confirm whether the symptoms of the meds were consistent. The replies and reading some of the posts on this site have offered me much more awareness.

I live in West Yorkshire. Thanks for your advice about stress, unfortunately it is pretty much unavoidable in my current job. So I think it is time for me to get some much needed balance in my life. Now I have recognised that there is a limit to my energy level, I need to make sure there is enough for the good things in life.

Hi Jemlola - welcome to the PBCers. I was diagnosed about 3 years ago and it took a while to get my head around and to accept it. Like you I think I had it long before as was not feeling great but putting it down to other things. I found it all very stressful in the early days and had some symptoms which I now realise were more to do with stress. I find meditation helps.

The good news is the Urso brought my lfts right down to reasonable levels and my health has stabilised. I have stopped worrying about it because it is usually a very slow moving condition so no need to panic. Research is underway and new drugs are being tested.

Consultants usually know more about PBC than GPs because they are specialists. Join the PBC Foundation and you can always consult them for current and reliable advice.

Feeling isolated can be a problem so keep tuned in to this site as there are lots of good people here who really understand what you are experiencing and will support you. Eat healthily and pace yourself so you don`t get too tired and, of course, enjoy your life. Let us know how you get on. A big hug - Diane

jemlola in reply to liver-bird

Hello Liver-bird

Thanks for your reply and the big hug. I did feel very alone yesterday and have been scaring myself with the worst case scenairo. I am sure stressing about the diagnosis and being hypervigilant about any reaction to medication is not helping me much.

Have been out walking today so feel much better for just getting on with things. I have signed up to be a member of the pbc foundation. I have had some really good advice from a number of people on this site, so I kind of know that if Gp is not able to answer my queries, I am probably best going back to the Consultant.

I have been waking early in the morning feeling a bit panicky, I guess it is my sub conscious reacting to my worst case scenairos I have been playing out. Thanks for your kind words it has really helped.

I am assuming that we each have same AND different issues but I have found that rest is essential to surviving this disease and learning to ask for help when needed. I was diagnosed 3 months ago at the age of 65. Not how I invisioned my retirement. I will pray for you.

jemlola in reply to Allmysons12

Thanks for your kind words

Hi jemlola

I have not much to add to the very good advice you have from the other contributors other than to say welcome.

best wishes

Hi butterflyEi

Thanks, and nice to know that you are out there, I feel a lot less alone.

Hi jemlola,

The replies above cover really good advice. The PBC Foundation and this forum have been such a help in helping feel less isolated, as you can feel when you don't know anyone else with the same condition. I'm glad you flund this site early, like many people I expect I went straight online and found all sorts of scary information about PBC, was really worrying! I was diagnosed about two years ago, it definitely takes time to get your head round the diagnosis.

You're doing the right thing getting straight on the Urso, I didn't and wish I had, wasn't aware how important it is for lowering your LFT levels. My GP didn't know anything about it, but I see a liver consultant six monthly. It is worth asking your GP for a print out of each blood test you have of your liver function, so you can feel a bit more in control and see how the levels are.

Relaxing and finding you time I would say is a big part of helping yourself, to try and ease the fatigue. As for the itching and other ongoing symptoms, still a big work in progress! I found letting a few close people know has helped, so I know I can talk it through with them when I'm having a rough day or not feeling too well.

Good luck with everything x

jemlola in reply to Shine1

Hi Shine1

Thank you for your post. I was lucky to have stumbled across the pbc foundation and this site when I started to google the condition. The advice and kind words from everyone who has responded have made me feel more able to cope.

I saw a really good Gp who seemed to know a bit about the condition. Sadly it is his last week at the practice, never thought but perhaps I should have found out where he is going to! He is referring me to dietician and is getting together all the tests results and consultants letters for me. As I am still getting used to medication and getting my head around diagnosis has given me sicknote to be reviewed in two weeks. This is a bit of weight of my shoulders which allows me to concentrate on relaxing and getting healthier without the stress of work.

Thanks for your advice about letting people who are close to me know about how I feel. Now I have had some more information, reassurance and time, I am probably more able to do this.

Thanks again x

Hi jemlola,

Sounds like you're doing some really good things for yourself, a little time of work to rest and focus on helping yourself and getting together all your letters and results etc for when you see the consultant. Yes, this forum really helps.

It's good you found a GP, but a shame they're moving on! Yes, maybe you could find out where to? The PBC Foundation do good leaflets about PBC, one is to give medical professionals, if you contact them they would send you it. I have found when seeing a consultant, get doen any questions and ideas you have, as you probably won't see them again for six months, so cover what's important to you to know.

It took me time to tell close friends, but the people I've confided in I feel more open with now, it's support for you but also means they will hopefully understand better if you're not feeling too great. Hope you are able to enjoy a little time for you.

Hi Shine1

Thank you for your post. It feels like I need to get my head around this and help myself to be healthier, so I am in a better place to carry on with everyday things. The Gp's suggestion about time away from work was a good call. Have had chance to relax, catch up on sleep and generally give myself permission to stop running around.

Thanks for your advice about preparing to see the Consultant. I have confided already in a close friend who has been great. We are both on a mission to try to be really healthy, so hopefully she will be able to inspire me on days when it all seems like too much.

Thanks for your advice and support.

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