For the first time in four years I have a fasting blood test tomorrow morning. This will be followed by a consultation with my GP in about two weeks. I will be asking about itching, which of recent is much worse, dry eyes, indegestion tablets and joint pain. I have read many posts which have helped me put on paper some sensible (I think!) comments and questions.
My first GP put down my symptoms to empty nest syndrome (he moved surgeries) the second GP (now retired) intimated that I was an alcoholic because I was a drinker so I am nervous about interacting with the GP with whom I am now registered still with the same surgery. The first specialist I saw was well informed and was very good and easy to deal with but the second chap I saw I felt rather belittled me and my condition. I know I am lucky I am not tuly suffering, I am not at death's door but I do have issues.
Does anyone else find it difficult to interact with their medical people? Does your medical professional keep a watchful eye on you with regular check ups. I suppose I should be more pro active but because of these experiences I have not placed a high importance on my PBC and have not asked for more to be done, so down to me entirely but I do wonder how other PBC sufferers get on.
best wishes
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butterflyEi
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Hi butterfly, I certainly have problems interacting with doctors. I have a good onsultant who keeps an eye on me, he is very probably doing the right things, but I don't know how up to date he is on PBC. I am his only patient with PBC and I don't feel understood by him. I haven't really gotten along with the GP:s I have met either. The first time I met my eye doctor I found him awful, too. But there's hope, eye dr got his act together and my current GP is great. Just the fact that she has some empathy and can see things from my perspective is so soothing.
We do have a lot of issues and no-one to guide us through them (unless of course we are lucky enough to have an experienced emphatic consultant) so sometimes I think there is this huge bit missing in the care system. How to cope with disease? Any kind. There should be disease counslers...
Not sure any of this helped you at all, but don't give up, there are some doctors out there that will be good for you!
The oddest thing about having PBC is that the simplest thing a GP can do for us is to translate the blood results as after all the LFTs (liver function test) in particular is not just unique to all of us with having PBC, it can be used to check other things with other patients in surgery from time to time (for eg how a particular med is having an affect, is it for eg causing the LFTs to rise as some do).
Yet it seems to baffle most GPs. I wouldn't mind but in today's modern world, doctors can actually find information on the internet from their own NHS system that can given them pathwyas to follow.
i am lucky enough to have great GPs but actually do not even bother them with my liver issues (except if it has a bearing on any other medical issue) - as I mention everything to my hepatologist at Kings. The GP is not a liver specialist so Ii don't expect them to fully understand although my GP is very experienced. The most important thing is to be comfortable and have trust in your liver consultant.
I have a Gp who openly admitted he knew very little about pbc, and felt he needed to do some research but I doubt that happened. However I would rather that, than one who dismisses how I feel so It works reasonably well now we both have that understanding.
If I feel my issue is Pbc related he will check with the Gastro who seems more interested in treating the whole person, not just the pbc so I like her and feel able to talk openly about all issues and my aches and pains.
My only concern is according to her none of my symptoms are related to the pbc, it's either the fibro or the sjogrens causing the fatigue and aches pains but it was her that got this diagnosed after referring me herself rather than having to go back to the Gp. So except to say my bloods had fallen on my recent visit she never mentioned it at all , so I do sometimes wonder if she is up to date with pbc. It has taken five years to get the relationship to this level though and the first consultant I had was just so awful I refused to see him.
in reply to
Hello candy12.
PBC does cause fatigue in a lot of patients. But I expect certain other conditions can also cause fatigue too. Not sure if the others you mentioned do but it could be due to all these together.
in reply to
Thank you Peridot, I think your right about it being all three, it's listed in all three conditions she just didn't think it was related to pbc. I had pbc and fatigue for far longer than the fibromyalgia dx but it only became worrisome just recently so that could indicate why.
Take care.
in reply to
Hello again candy12.
Interestingly my theory with regards to PBC and possible fatigue with it is due to those antibodies - the anti-mitochondria - as mitochondria are actually called our 'energy cells'. I did read a book intended for an older child just prior to the festive season as it was bought for a gift. The book was the human body and in it there was a mention of the mitochondria cells and them being energy cells and the fact that they play a big role within the liver. (I did post on this site a bit more information at the time.)
Can't say for certain if how my way of thinking is but if these mitochondria have antibodies that have them under attack, who knows. I suppose this would be one good question to ask one of the medical profession.
Hi Candy 12, My gastro is the same, apperently my PBC is "mild" and shouldn't make me feel so sick. He thinks I am tired because I am depressed, and maybe he has a point but I still feel that if I am depressed it is because I don't know if I'll ever feel energetic and strong again. A vicious circle, I know, I appreciate advice and realise I need to find ways forward. I just wish my gastro knew how to guide me.
I don't actually understand the terminology 'mild' as in PBC. To me you are either progressing at such a slow pace the LFTs are pretty much the same and could remain that way or they are slowly climbing over time as is also possible.
I was fortunate that the hepatologist I went to at local hospital did say he knew about PBC. He said that he gave talks to GPs on the very subject as a lot didn't have much of a clue about it and only when there was a patient diagnosed did they then become that bit more familiar with it.
The surgery I registered with following diagnosis, one of the doctors there who I saw happen to go through the blood results with me in pretty good detail. He did say how much at the time (early 2011) urso was to the NHS as I hadn't been on urso for more than 5 months at the time and I had to fight for a 90 days prescription. I informed him that was all I was taking on a prescription and I wasn't that keen on taking a med for life plus I have always had to pay the NHS charge. He said seeing as I way paying and said he agreed to the 90 days. He did add that day that he was due a talk on PBC the following week. Unfortunately for me I never saw this GP again, never managed to book an appointment when I had to go in 6 months later and then this GP left to join another practice in another area or might have got somewhere with him.
I think if a GP surgery in particular had more than one PBC patient (I failed to find out if any others registered at both practices, apparently due to Freedom of Information, even someone stating there was another patient, no more info!) at the ones I've been registered with since diagnosis - 2 surgeries - then it might be a better thing for the patient as they could see the same GP.
Hi I had problems with both my old GP surgery and new one. (We moved to a different area). I contacted the PBC Foundation and asked them to send me some leaflets for Professionals. I then went for my next consultation armed with the leaflets and my GP and I went over the symptoms I experienced. What a difference! He then asked for more so he could hand them out to his colleagues at their next meeting 😊😊
I have a good gp who really cares about me. He tried to persuade me to take Urso when I gave up because the severe side effects. He even call me over the weekend when he got my blood test results. However he doesn't believe the nutrition maxgxl that I take which helps the side effects. All side effects have disappeared.
I think it's up to ourselves to seek different ways and solutions.
I am also trying Chinese acupuncture which has helped too. It has cleared my gall bladder meridian blockagein my head. Bill flow has been improved. I just started trying gluten free diet. See how it goes. Hope my notes will help.
Hello butterflyEi.
You didn't state if the fasting blood test was due to having PBC or for something different. I've not had a fasting blood test whilst bewing diagnosed with PBC for just over 4yrs now. (I think if I am right a fasting blood can be done for sugar levels?)
Itching is part of PBC unfortunately as you more than likely already know. I started itching almost 5yrs ago now and 9mths later was informed I had PBC. The itch has persisted but not as bad as it was during 2010. I know some days and even up to a week I can itch more severely than at other times. I tend to itch at night with a cut-off around 5 to 6a.m.
It is of no surprise that the doctor wrongly assumed that you had a drink problem, I think you'll find majority of us get this as an initial reaction to abnormla LFTs. I did and not once! In reality though a GP would know after your first abnormal LFTs with a follow-up one that you were not a drinker. One of the GPs in surgery when I called after my 2 LFTs in 2010, he wasn't the one who had requested the first and then 2nd bloods, he had looked at the results and happen to be in surgery when I rang so he spoke to me. He did say that the first thing any doctor would ask a patient with an abnormal reading of the LFTs would be how much they drank but did state in my case I'd said I was not much of a drinker at all except for some of the festive occasion and odd birthdays which was the truth. I had the same nurse in a 6 months period after diagnosis who I had to see for the bloods ask me how much I used to drink! I felt offended the first time and was polite, the 2nd I just never bothered saying much and was thinking how ignorant she was as she'd not even bothered to have a bit of a look up at what PBC actually was after seeing me the first time. To me a good medic even a nurse would attempt to find out a bit about something that is new to them.
I moved GP surgeries twice since diagnosis and been with this current one 2yrs now. Not been happy with any since PBC. I rarely went pre-2010 as it was but now I just get this feeling they can't be bothered, maybe because they can't do much for me or because they don't know nothing.
The female GP I am registered under now, she might have taken a bit of time to find out about PBC but she seems a bit of a flapper to me. When I asked her about one of the blood results last July, she looked and then said it was nothing to worry about but didn't offer much in the way of an explanation. At least though she is the first GP I have seen who asked me to in on registering 2yrs ago and devised a plan that we could follow whilst things are going so well. I think after being on urso for 4yrs and looking, my results on a graph would make a wavy line so I expect currently it is known when there are slight ups and downs. I have noticed this myself.
I do think if you have any worries then jot down and ask. Then a GP can give you a reason why this or that need not be a concern. I try to remember that every patient who goes through the surgery doors is different. Some expect something, others aren't readily so. I think this depends on how you are as a person too. I try to have my own views on PBC and remember that not everything is attributed to having PBC now. It's more than likely going to be down to PBC if it is classed as a sympton you can have of PBC (ie itching is one, dry eyes are another as can be indigestion and also heartburn).
I think the main concern of having PBC is that majority of us can get on to live a pretty much normal life as I consider myself to do so, whereas others do tend to be floored with fatigue at times. I think fatigue is a definite sympton of PBC that can be something that can be disbelievedby a lot of people. I even had my own brother say to me a couple years ago when I happen to say I was tired (not fatigue - I did have this in 2010 but it vanished at some point during 2011), 'Everyone gets tired at times'. It was a true statement but I just said to him I get tired a lot later afternoon, it is due to not being able to have a full and good nights sleep a lot due to itching at night. It then rolls over onto the day so I often feel more tired than the normal person.
If you can book your GP appointment online, then see if you can choose a GP you feel most confident with. I know at the surgery I am with although I have been seeing this female GP for the PBC at times (med review usually), any of the other GPs tend to look through blood results, etc when they come in. If booking online, you can then say that the other GP was the earliest appointment.
Good Luck and hope you will post back after you have been
I am sorry but the GP comment about empty nest syndrome made me laugh out loud, how can any GP be so crass. It is difficult when your GP knows nothing about PBC and sadly there are some that are too arrogant to bother finding out. My GP is very good, if a little over cautious when prescribing medication for other conditions, some related to PBC some not, or on the odd occasion I need antibiotics. She did at least do her homework and was very interested as in her words "you are the only patient we have registered with PBC" and this is a very busy inner city GP surgery. It also helps if the hospital consultants know their stuff, again I have been lucky as gastro diagnosed my PBC and continue to taken a keen interest when I have yearly check up for Gastro problems even though I am under a liver specialist at another London hospital, where I have 6 monthly checks currently. So hang on in there and yes if needs be find another GP who understands the condition. Good luck
Your answer amused me, I look back with a wry smile, there was a lot in the papers about it at the time and I fitted most of the markers but as I have never been blessed with children it was indeed crass.
Fasting bloods can be ordered if a previously taken cholesterol test was elevated. It can also be ordered if a previously taken glucose test was elevated.
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