I had my first 6 month appointment since diagnosis on Thursday its left me a bit upset. All my blood works were within normal boundaries which is great as the Urso is obviously doing its job. But every other thing I tried to discuss he told me was not connected to my PCB... My left and right side pain under my ribs (getting worse every day) my joint pain, especially in my hands, the cramps in my feet, the looser than normal bowels, the insomnia, the weight gain, the fluid retention,,,, all of these things he has told me are definitely not PBC,,, only the itch, which he said was mild, and the fatigue, which he told me to try to go to bed earlier. Mum then gave him some of the PBC leaflets and he immediately told us to look at the Liver Trust UK site for best information. I did this when I got home just to see if what it said was any different from what the Foundation said(it isn't) but there in black and white were a list of symptoms for PBC which he had quite emphatically told me were not connected. I am now even more confused than I was before, as a lot of my health problems have been put down to my PBC so I have been thinking all along that my appointment was going to be helpful in coming to terms with it all.
I got the distinct impression that once he had told me my blood counts were normal again that the appointment was over and I was just holding him up.
Is this normal? He didn't even check where my pain is, ask how bad the itching or fatigue is, I've to start Cholestramine and go back for follow up in 6 months.
Sorry everyone, I just feel the need to rant or I'll cry.
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lennie9215
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I have to say that I don't agree with your doctor/consultant as to the symptoms you describe not being a symptom of your PBC. It's a very stressing time being told you have this disease. I've been diagnosed for just over a year now and I still feel very depressed. I also have trouble sleeping and have put on weight ( although I think the weight thing is caused by the Urso )
If you haven't already then join the PBC Foundation and contact someone there if you need any help. I totally understand your frustration as I have had no real advice from the hospital myself. Your not alone !!
There are a lot of good people on here with years of experience in suffering from PBC who can tell you stuff. They have helped me. It's good to talk about it
Thank you Mike, I have already joined the PBC Foundation and thank goodness for it as it seems to be the only place to get proper answers .. I probably had a high expectation for my appointment due to other health issues I've had going on for the past year and assumed that the liver consultant would be as keen as everyone else is to get me back on track. So it's back to my GP now to tell him what has been said and to find out the next step. I think life may still be on hold for a wee while longer. Thank you for taking the time to reply. Take care
Hi Helen, sadly your story is all too familiar , I had a similar experience when I was diagnosed 15 years ago, and came away from my appointment totally deflated, the consultant basically said there is no treatment, no cure and I had between 2 and 20 years until my liver gave out. He wouldn't even give me urso because he said all it did was improve the blood results and not the liver or pbc , I then went back to my gp and asked if I had to go back there, and he said no ,and referred me to another hospital which thankfully was fantastic and I have the most amazing consultant that I have seen ever since, I don't know if this would be possible for you to be referred to another hospital , take care 💞
Hello lennie9215.
Apparently it is true that some symptons we can acquire might not necessarily be due to PBC but from what you have stated here, I think some just might....
....it sounds as if your 'looser than normal bowels' is due to the urso. For some of us it can cause looser stools but also for some constipation. I was diagnosed in December 2010 when I was 46 and I'd never had any bowel issues but after taking the urso I started to have bouts of constipation. I have had to step up in my diet with even more fibre and it seems to work for me. Apparently some experience weight gain with the urso but I think that is probably down to the fact that by taking urso we are improving the biliary flow so food is more than likely digested better.
Though bone issues might not necessarily be due to PBC I think that might be due to the fact that fat soluble vitamins can be a problem with this condition. I do think that any
health issues that causes a compromised situation is more likely to have a bit of a knock-on effect to cause other health issues. I'm no medic but I know the consultant I saws pre-diagnosis and following, he seemed pretty well up on PBC, he stated he gave talks to GPs to make them aware (my GPs are not familiar with PBC, new to them).
I started itching intensely early 2010, that is how I ended up being diagnosed with PBC. I don't think I'd have been happy had a doctor said to me if I try to go to bed earlier to try to dispense with fatigue (I did have in 2010 but at some point in 2011 it vanished. I do get tired later afternoons due to unbroken sleep due to itching from around 11p.m. every day), he/she would be one I'd wish the itch upon to see how that person managed. I find I feel worse lying in bed at night with having the itch! I think one reason I've not gained weight even though my bloods did improve after starting urso is due to the fact I'm active during the night. I tend to get up and visit the bathroom if I wake up or am lying for some time. It seems to vanish the itch for a short time.
If you've not already seen this, check out Liver North website (they are based in Newcastle, UK) as they can send you for free a dvd all about PBC. Just fill out details online, I did about 5yrs ago now (tho' I didn't watch all the dvd, my husband did).
I've not yet succumbed to any further medications, just take the urso. I have never fancied taking the Questran (colestryamine) for the itch due to the fact it works for some, not others. If it was said to work in all cases, would probably be a different story for me. I also do not want the additional side-effects of taking this.
I did read up on PBC in the early days. I stumbled across it pre-diagnosis in a library reference book. I decided long since I'd deal with things as and when, get on with life as things that PBC can become might never happen and it is meanwhile a waste of time worrying about it. I think once you reach your first year following diagnosis and then another and so on, you do start to feel differently and all being well with taking urso, you just get on and don't let it be as worrying as it once was.
If your bloods are not alarming I'd say don't expect a doctor to go overboard with consultations. This is what I found in the early days. I asked to be discharged from hospital outpatients the year after I was diagnosed as I wasn't keen on going (didn't like the mannerism of the consultant for a start plus what happened when I went). Discussed with doctor, he agreed he'd refer me back to GP but with the promise at some point in future if needs be I'd be referred back. That was 5yrs ago now.
Sorry you had a disappointing visit with your doctor. Unfortunately, I think most of us have had disappointing experiences when dealing with doctors.
Were you seeing the liver specialist? If so, specialists have this terrible habit of saying, not my problem. If it isn't something related to their area of focus, they just say they can't help you with it. Period. Its really bad bedside manner. I wish they would have some measure of social skills. It makes more sense to me for them to say, "Your liver is well on its way and that is what I focus on. Please follow up with your GP for your other symptoms so that they can find some solutions for you." At least then you would understand why they are being non-responsive and you would know the next steps.
So far as him saying that none of your symptoms are related to PBC, I think that's the current standpoint for medical professionals. Until there's enough evidence and studies to change medical protocols, they will stick to this. In the US, doctors are very reluctant to say anything other than established medical protocol out loud for fear of getting sued. They kind of act like robots, saying only the words that they are legally required to say.
Luckily, we have other sources of information like BLT and PBC foundations. This is where we can see that, even though it might not be "medical protocol" in the hospital (yet), there are many of us coming forward and reporting the same symptoms like pain under the ribs. In a lot of ways, we are ahead of the game because we have the comfort in knowing that our symptoms are common among PBC sufferers. We can use that information to take charge of our health where the medical staff is restricted, especially in areas like diet. When doctors refuse to acknowledge our symptoms, it does feel like we are being invalidated, though.
I've gotten to where I just use my doctor's professional opinion as a tool in my arsenal. I pay him to let me know what he thinks and what his best advice is, and I take it into consideration as I put my own pieces of the puzzle together. For example, fatigue is a symptom of PBC. I could just accept that and live the fatigued life. But instead, I kept pestering my GP, the gastro, and the liver specialist. Finally, they tested me for other causes of fatigue and found my Vitamin D deficiency. I'm still low on energy, but it is better than it was. Its always good to rule out multiple causes of any symptom.
I hope that helps. Keep going and don't stop until you have the best health you can achieve!
Chynablue, What is BLT? To hear you did find you had Vit D deficiency to be one cause of your fatigue makes me wonder why so many do have a Vit D issues. I was diagnosed last year with Vit D deficiency as well and it has continued to stay low, then right after that I was told I had Osteopenia but within a week after than Osteoporosis. While my Liver functions are back to normal from taking Urso my Vit D continues to stay low even with mega doses. I too feel fatique and recently my GP gave me a Vit B 12 shot. Helped a bit but I have spells where I feel great then I get sluggish! Hang in there!
BLT is British Liver Trust. They have good info on liver health.
The liver converts the vitamin D you eat or absorb from the sun into its usable form. So a lot of people with liver issues have deficiencies.
I have an appointment coming up. I am going to ask that they check my B12 levels, and any other votamin levels, too. Maybe they will find something so I can treat it and decrease this awful fatigue! Good tip
Vitamin d was low with me too. I take 2 pills weekly 50,000 Mgs each and my vitamin d is still on the very low side of the range. I was given that by my thyroid dr an endocrinologist.
I'm sorry you had to have this disappointing experience. I recognize all the symptoms you have and mine came at the same time as the PBC was diagnosed -so, well, yes, doctors can be wrong. My consultant is like yours, he doesn't want to know about anything that doesn't show up in tests. It's sad but I have persisted and he's been helpful - his way. Prescribed pills...
You learn to deal with everything - all the symptoms, keep insisting you need help!
Hi sorry to hear you are not getting much help, ime afraid it's a grey area for some doctors. In the early days I used to go to my doctor for help and he just threw pills at me, it's wasn't until I was referred to Newcastle to see Proffessor Jones I found someone who understood how I felt and listened. I don't go to the doctors anymore regarding PBC. They are marvellous at Newcastle I count myself very lucky.
But as for the fatigue I am afraid there is no cure as yet but they are working on it, soooo fingers crossed.
So sorry you received such a poor hearing, and I second much of the advice and support already given.
I think you say, above, that you have joined the PBC foundation. In their 'Bear Facts' magazine (not the last one, the one before) they had a summary of a conference (I think) where consultants presented latest results and thoughts on PBC. Included in this were statistics and charts about the major symptoms, and joint pain was definitely well near the top. Also, many others on this PBC F site have cited the other symptoms you mention.
If you are in the UK, and this was your GP, I would see another one in the practice, and take along the 'PBC F' and Bear Facts charts and info. I would then ask (demand?) to be sent to see your Consultant again - so long as s/he is an actual Liver Consultant (rather than a Gastro) , and preferably one who deals with PBC. If it was the Consultant who dismissed your various symptoms (and maybe if the one you saw is not a Liver/PBC consultant) then go back to your GP and ask to see another Consultant. All this is possible, and you don't have to go private. I asked to see one of the leading PBC consultants, after my nearest Liver chap gave me a diagnosis that does not formally exist. The PBC consultant was brilliant, and he talked of aspects of PBC that my GPs knew nothing about (and they are pretty brilliant GPs, eg they agreed that what the local chap had said was nonsense).
When I read posts like yours I feel so sad that others with PBC don't have such a friendly, informative and supportive consultant like I do. Seems like a lot of them need to hone up on their interpersonal skills as well as updating about PBC and current thinking about it!! My consultant is a gastroenterologist, not a liver specialist, but one of the first things he did (apart from actually listen to me - a refreshing change!) was to give me some paperwork to read about the disease and the contact details of the PBC foundation. He has never dismissed any symptoms I've gone to him with but has discussed them fully and where necessary referred me back to my GP if he doesn't feel they are PBC related. I asked for a bone scan as my sister has osteopenia which he arranged and because there were signs of change he immediately prescribed calcium/vit D. I read that slight weight gain is a side effect of the Urso, bit of a pain but if it keeps my liver ticking over OK then that's a small price to pay, just have to watch what I eat more. I'd suggest you go back to your GP to discuss these symptoms and then ask to be referred to someone different who actually specialises in PBC if possible. Don't apologise for having a rant on here - consider us your safety valve!
There are many issues related to PBC but once your liver numbers look normal the docs seem To care less about the other issues. I thought I was going crazy with unexplained weight gain, insomnia and depression until I came here and found others with similar problems. I'm on pills for hypothyroidism and my kidney dr thinks I need blood pressure pills because of the 8 pound weight gain over the last year.
I also might have IBS but the dr said I'd have to figure out what sets it off by process of elimination. I have fatty liver too. Good grief. I had nothing five years ago and now they are all piling up.
However, mg latest liver numbers were normal and it doesn't appear that any further damage was done. So I'm looking forward to another good year and done more traveling.
Many people in this forum can talk about stuff and it's always helpful to hear you are not alone
Thank you everyone that has replied,, and it makes me feel much better to know I'm not the only one with this experience. I already have several health issues,,, IBS, fibromyalgia, arthritis, Diabetes type 2, as well as recovering from having my lung stapled in place to stop it collapsing so I guess I really just wanted to feel that the consultant (liver) understood how confusing it all was for me not knowing which symptoms belong to which condition. I'm not even sure that knowing would help but I feel that it would.. I spend most of every day clawing at my scalp, whilst mopping up sweat and feeling exhausted,,, all through completing job applications and wondering how I will ever cope with returning to work if all this is going on.... But some of the stories I read here, and the positive replies help me to know that eventually some stability will return once I get to grips with it all.. Thank you again everyone
It sounds like maybe you need another Doctor. A liver biopsy will give you the answer. That was my deciding factor along with my blood work which was not normal at the time. I hope you get the help you need.
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