My question is regarding a liver biopsy when testing positive for PBC - high reading, liver tests ok, but fatigue and a strange tight feeling around my upper waist most of the time. Should I be pro-active in requesting a biopsy or do I have to wait for certain symptoms to appear or time to past? If so, how do I approach it? I have several autoimmune disorders and one that I saw a specialist for 5 years before he took the next step when I insisted that I was really unwell and my cough was not nuisance value. He discovered that I had a rare condition for 5 years and was more extensive than first thought once he finally did a ct scan rather than an xray, which was followed up with some sort of video diagnosis under anaesthetic.. I have had similar reactions to other diseases such as stage 3 cancer - said I looked too well to have cancer and specialist did not examine me, but another did and found the blockage. There is more, but enough for today. I just don't want this to go undiagnosed when it could be helped earlier rather than later, if necessary. Any suggestions. I also have a high ANA reading, speckled, not Lupus, which might not be relevant, but....
Liver Biopsy - to ask or not to ask - PBC Foundation
First, regarding liver biopsy, don't feel a need to push for that at the moment. It is no longer the test of choice for all of us, only in some special circumstance when the diagnostic criteria are not met by the blood tests. Other folks here with sharper brains than mine will reliably tell you in greater detail. Of course, PBC Foundation is the best place to go to for information and advice on any matter PBC related. Also, you will come to realise through contact with PBC F that they are unlike any other organisation. They truly are amazing and each of us is an individual to them. Don't hesitate for a moment to phone them.
The rest of your post is such a familiar tale I thought I could have written it! The good thing about this site, the PBC Foundation, the PBC App, is that you will fast be versed in what matters for you, and how best to be your own advocate so you find yourself more and more not being fobbed off. There is a person who replies frequently here, and it is impressive how she always describes her treatment in terms of how SHE and her doctors have made a plan together. We learn a lot from how others are managing, and we hope that we are able to be of help to others too. That's the ethos of this site, hosted by PBC Foundation. Very best wishes
Apologies spalatin. I hadn't read carefully enough and thought you were diagnosed. Very difficult to focus at times! I would definitely take ninjagirlwebb's advice seriously any day, and it is ninja I refer to as skilled in self-advocacy. Avoid getting upset if you are refused on the grounds of the risk of bleeding outweighing other benefits, only ask if they would explain in detail to you what the position is. Better still, phone PBC Foundation tomorrow!
(there was a reply from ninjagirlwebb a few minutes ago, and it has disappeared! I didn't imagine it, truly!)
Thanks for your comments about my self advocacy which is only possible because of my compassionate doctors. They are very collaborative & are accessible to me, not just when I have an appointment.
If you have no other markers for PBC other than one particular reading, I would seek out a hepatologist (liver specialist) & see what they recommend.
I think based on your prior experiences, you might feel better insisting on a biopsy for peace of mind. Find a doctor you trust & have them guide you through a plan to diagnose which may or may not include a biopsy.
I believe spalatin's issues are: do I actually need xyz, (biopsy) and if so, given that there is no automatic right to get what I think I need, how best to go about asking for it in a way that delivers. This is how it is in UK where there's an ongoing will to destroy the National Health Service in favour of a profit-making privatised scheme. There's no perfect health system anywhere, each has its shortcomings but we do the best with what we have, and we're all still trying to get better at it. It is hard when you are in ill-health, and have fatigue, to have to work out what you need and how to get it. This strains doctor-patient relationships a little at times!
Thanks for the clarification. I think someone familiar with how it works in the UK should answer.
In the US, if you insist on a biopsy, chances are the doctor won’t say no or you just find another doctor who agrees with you.
It holds good by the way that I appreciate how you express the "working together" position that you take. It helps us all. Even with less co-operative medics, or with those constrained by Hospital Trust demands, it still is better as a patient to be clear that you'll work together and not just be "done unto".
Yes, whenever I talk to my doctors or send a note. I use the word "we" a lot. If I see some blip in my blood work, I would say something like, "are we concerned about this?" Or "what are we going to do about this?"
this is really helpful, thanks Ninjagirlwebb. I can definitely do well to use these at my next doctors' visits. It will be a big improvement. I'll keep you updated with outcome.
This link goes to the UK document with guidelines for diagnosis and management of PBC. it has great user friendly set of questions to ask consultant regarding diagnosis and it addresses the question of biopsy or no biopsy.
Very helpful document.
Thankyou. I believe you understand the issue. I have replied in more detail to Eileen.
Thankyou ninjagirlwebb. I believe you understand the problem exactly. I hope you are able to read my response to Eileen. Best wishes to you.
I think once you establish good rapport with your hepatologist, anything you want to pursue won't be look upon as "demanding." I would say something like, measles is running rampant. Do you think I need a booster shot? He then says, next time you do blood work, we'll test for immunity. Then I say, we are doing labs today so please add that test.
Yes- it's good to advocate for yourself- First I am wondering (forgive me if you already covered this) Have you had positive AMA test ? and is your Alk Phos or other levels on the Liver Function test high?
Diagnosis of PBC can be made if these 2 are happening. Sometimes biopsy might be done to rule out other issues and or to get an idea of staging- however biopsy alone is not a gold standard for dx of PBC.
Thankyou for your response Eileen and others. I hope this is visible to all you great responders. Yes, the AMA is positive with quite a high reading, according to my GP. Other liver tests are normal. At this stage, without a discussion with my gastro doctor who is also a heptologist, I believe they will check the AMA again in 6 months, but my question was to ask for suggestions as to the best possible way to be assertive yet not demanding in asking for a biopsy. As you read, I have been overlooked for many things, particularly things that are 'rare' and I just wouldn't have that as I look too well. I think the total now is 7 incidences. Of course, when you are treated as 'no doubt she will be on your door again' sort of comment, you begin to wonder if you are a hypochondriac, but usually the test results are there, but when drs for some reason don't look further into things, and don't know what to do, being a woman it is usually all in the mind. Usually, the specialist and I work out a great management plan once properly diagnosed. Unfortunately, I lost a husband also when the doctors could see no scientific reason for what was happening to him, but we knew he was ill and when the illness had commenced and with what drug. At the time another 5 lives were lost in the public hospital system alone, and since then I have been told that they will stop a drug 'on a hunch' in the future, although at the time I was told that it was purely coincidental. I have since found out that there was a international problem with that drug but in the UK they believed their patients and stopped the drug. Even after all of this, I have a great respect for the medical profession and believe as the younger set come along, we can speak more openly to them and it is not do as I say, but rather, let's work through this together.
Best wishes to all your wonderful people on this site and thankyou for your advice and encouragement. I will being meeting with my heptologist to discuss the liver in June, and have photocopied the literature provided by the Foundation so hope it goes well. I am getting to know him through his management of the bowel cancer, etc., so am feeling reasonably confident that we will sort something out that both of us are happy with.
Just a thought on your last comment, it took me about three years after resection of bowel to realise that the issues I continued to have were autoimmmune related, and not to post-chemo-rad-surgery.
That's interesting. It is now ten years since my resection of the bowel and things are never quite the same as before, but all is ok and it is good to still be here. I hope you are going well too.
Sounds like you have a good plan. The info from the PBC Foundation really is great for organizing questions and to prep for consult. Keep following your instincts and push for what feels right once you meet with consultant. It's a month away so not too long now.
Keep us posted we care.
Also I resonate with your story of not being taken seriously by medical system. I lived that story too (not with PBC)
. -- being labeled as anxious, nervous woman, drug seeking... drama woman..
8 or 9 years of my life in hell, doubting my own sanity .. and having to give up so many things I loved to do. Until I finally met dr. who knew what was wrong and how to fix. I'm sorry you went thru that. I know the mental damage/scars it leaves.
.... and me too, with stage 3 cancer while under surveillance with PBC. It has been helpful to me, a way forward, to let go of past issues, huge and hurtful and loss-causing as several have been, and move on. Sometimes they re-appear in my thoughts, but they are just that, only thoughts, and I let them pass by. Sometimes that is harder than others. When it's hard, I try to remember to give myself a break. The only scars I have are on my body. I don't regret them. The doctors who made them saved my life. We don't have the time or energy to carry our regrets, but we can convert them into the knowledge and energy to deal now with the hand we've been dealt.
We know 'insisting' doesn't work. What can help where things get sticky? Ask a question that necessarily leads to an answer you need rather than to dismissals or denials which are the consequence of doctors coming under increasing pressure in their contract to do a job without the means to do it.
If you phone PBC Foundation, they'll help you with this, and it is also set out on FBC website. Also, I hope someone good at giving reference directions will jump on and tell you exactly where to find these. You'll be fine. Please let go of the past hurts and only take forward your determination, as you have shown in your post, to get the treatment that best helps you. You can do this. You have gained strength and knowledge from surviving every adverse incident this far. Keep us informed! Go gently! You can do this.
I think our story and ones like it, were more common a few years back. thankfully, either we have become more knowledgeable and armed with good information, or the training for doctors leans towards co-operation and team effort with the patient, or a bit of both.. All the best with your health.
Thanks for you good advice 220681ok. They do say, if doesn't break you, it makes you stronger. Gently, gently is the way to go, but keeping the eye on the goal at all times. Best wishes for your health.
I was hesitating a lot first, but then had it done with no regrets. Just for your piece of mind.
If someone is outwith the UK, we can use Skype, whatsapp and facetime to make sure conversations happen yet are still free of charge.
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