Upset and confused 😭

Today I have been to see the consultant again and he has told me the result of my mri scan is normal and therefore he cannot offer me a diagnosis. He did confirm that my ALT has gone from 108 to 49 since taking urso and said he is happy for me to continue taking it. I asked him why I would need to take it if I do not have PBC and his reply was that it has no side effects and it is up to me if I want to carry on taking it??? Isn't that his job to tell me what to do? Not really sure what to think now or what to do but am going to complain to my gp and maybe ask for a second opinion. 11 months of waiting to be told nothing wrong yet liver function has improved on Urso. Am so confused. Any suggestions or similar experiences would help please 😞

[Hidden]

Have you been tested for AMA?

[Hidden in reply to Hidden]

Hi yes my gp referred me for that reason. My blood tested positive for ama and the letter from the first hospital appointment says it was 1:160 positive. I don't know what this means though?! Any advice is appreciated! Thanks.

[jane1964 in reply to Hidden]

Hello I would suggest you call the pbc foundation and ask them for advice.

I have found them very helpful in the past.

Jane

[Hidden in reply to jane1964]

Thanks I will.

[PBCFoundation PBC Foundation in reply to jane1964]

Thank you jane1964.

regards

PBC Foundation

[PBCFoundation PBC Foundation]

Morning Happy43,

I have responded directly to you

Best Wishes

PBC Foundation

[Hidden]

Hello Happy43.

Well to me it sounds like you do have PBC but I am no doctor and don't know exactly what has been wrote in your medical notes.

I think sometimes it has to be noted that doctors often write things in our notes but then don't think to inform the patient that they have something or even in simplified terms.

I am a curious being due to past experience (my former late husband and doctors) and do want to know things so try to find out certain things and then ask the doctor.

I presented early 2010 to a GP with itching 24/7. He thought at first an allergy but then did bloods that turned up with abnormalities in the liver function test. He did go down the NHS pathway with various checks and then referred me to hospital. The day I had my first hospital appointment the consultant just said he was going to do some special blood tests known as antibodies and it was then I asked if one would be to check PBC. He then asked me how I'd heard about PBC (read in a library book first and then put on net).

I started on urso after being diagnosed with PBC late 2010.

At the beginning I thought the urso was causing problems for me, heartburn for a few months in the beginning and I did think itching was cosiderably worse. The consultant on my first return visit following him having my GP inform me I had PBC originally he said if I thought urso was not doing me any good to come off and compare. I decided to wait on my first blood check on urso and it was pretty fantastic so I pressed on and the temporary side-effects did leave me. Still got the itch though it has altered somewhat over time and is much better.

Urso is the only medication (I prefer to call it a supplement as basiclaly it is a form of bile we are taking) that is used for PBC at present. If you have abnormal LFTs and the urso is bringing them down then it seems feasible that you should continue from what you have put down on here.

Normally it doesn't appear to be normal for a doctor to make a decision to offer a patient urso without good cause.

I thnk in your case I'd rather find out more information about myself healthwise and certainly speak to your GP who should be able to go through your records regarding this with you and if you are still dissatisfied then ask to be referred to another consultant. It is a patient's right and I think with some decent answers you can start to press on with life and deal with it rather than wonder.

Hope you get your answer soon.

[Hidden in reply to Hidden]

Thanks peridot for your reply. I will speak to PBC foundation and my gp to try and get some answers. Take care.

[badpiglet]

Hi Happy,

In your other post you said you'd had a biopsy in Jan and were borderline for PBC & AIH and that your consultant was going to seek a second opinion. Did he do that and exactly what was the second opinion? If it was borderline, ask your consultant if the second opinion gave any advice about URSO.

Although it's frustrating & unsettling not to have a diagnosis, doctors aren't always in a position to give them. That's not necessarily a bad thing in some instances, despite us wanting a firm diagnosis. PBC is known to be a very slow moving condition ie it's perhaps not critical, as far as PBC is concerned, if you are borderline without a diagnosis for weeks, months or more.

There are many of us on this site in the borderline category. My consultant felt able to give a firm opinion that I did not have PBC but that is rare. It is far more normal for doctors to admit when the results are not conclusive and that monitoring on at least an annual basis is the course of action to take. Some in this situation seem to have been given URSO and some not - but we're all very different with very differing sets of circumstances so it's not easy to always tell why.

It sounds as if you'd be happier with a second opinion but be prepared, the second opinion may be along the same lines as the first. If the decision is yours about whether to continue taking URSO, I'd research URSO more and talk to the PBC foundation about it. But the fact that taking it HAS dropped your ALT result and your consultant is happy for you to take it stands for something.

I do remember when the shocking news of me possibly having PBC happened, that I reacted (with hindsight) in a strange way. It was almost as if I felt a journey had begun that I couldn't get off or stop but would definitely progress quite steadily, even rapidly through stages. I definitely expected progress of the condition. Which is weird because progress of the condition is NOT what is wanted.

A bit like going into labour for the first time, you think 'this is it', it will all happen now quite quickly. With my first labour, it was surprising and took some mental readjustment for me to follow my midwife's suggestion to go for a nice long walk for a mile or two, as nothing, absolutely nothing was going to happen in the next 5 minutes.

[Hidden in reply to badpiglet]

Hi badpiglet thank you for taking the time to reply. Everything you say makes sense and I realise that time will tell as far as any possible disease or progression. I have been told to come back in 12 months and be tested again. The consultant's referral for a second opinion was also non conclusive and the mri scan was normal but the biopsy showed some features indicating chronic bile duct injury. I'm not really sure what else causes bile duct injury but I will speak to the PBC Foundation and my gp about it. The problem I have now is to decide whether to take the urso or not as it seems to be my decision according to the consultant which I do find a bit odd. Also I have spent the last 11 months thinking I have something wrong with me and now I have not? The anxiety and worry have not been pleasant but I will remain optimistic and carry on as normal just need clarification about the urso. Thanks again. Take care ☺

[Belliver]

Hi, Happy43, I think you are justified in being confused----'keep taking the pills anyway' !?! I absolutely would continue taking Urso while getting 2nd or even 3rd medical opinions, you already know your liver has improved with it. I don't know what the background of your 'consultant' has with regards to PBC & I don't believe in doctor shopping, but things aren't adding up here. This is why I think it is so important to keep our own copies of medical tests, bloodwork, etc, so that when a situation like this crops up, you are able to do a checklist of symptoms, test results, whatever, so that you are able to discuss your condition based on fact. Don't be discouraged, look on the bright side, maybe you are one of the lucky ones that has very mild PBC(?) Time to consult with liver doctors, there are some center (JohnsHopkins, for exmple) that you can get 2nd opinion by mail-- check their website, it costs money & they do need copies of ALL your test results, whatever, take the Urso while you are fact finding. BEST WISHES

[Hidden in reply to Belliver]

Hi Belliver, thank you so much for your reply, it reassures me from the responses on here that I'm justified in asking my gp for an explanation and I'm not going crazy! I am still shocked at being left with the decision as to whether I continue taking urso! Will carry on taking them and see what my gp says and also I will contact the PBC Foundation. Many thanks ☺

[gizocsi]

Hallo, please, peace! The decision if we take any medicine is always our, and we have to rise our consciousness in health affairs, if we have a long distance condition. Urso is a good thing, it was prescribed to me when the doctor knew only that bile ducts are not well. When he realised I have PBC he said it's the only med. and from now life long "partner". After an eye-specialist said it's not a medicine, I stopped taking it, but it was worse, and hepatologist said, it's my thing, so I started again. With Your AMA results and answering well on Urso, I'd not hesitate. I didn't find any side effects (by the way, there are so many side effects of bile ducts problems...) just sometimes it's hard to swallow. I think if taken early, and taking care of YOur liver in diet, You should really not worry too much, as almost all of us do in the beginning. I'm so sorry for the lost time and energy, taken by the deep depression of the first years. Now I try not to miss a pleasent walk in sunshine, telling myself how lucky and happy I'm at those nice moments coming everyday silently, surprisingly regularly. Take care!

[PBCRobert Partner]

Hi, Happy.

Firstly, I believe you have been sent a message with my direct contacts if it would be helpful to you if we speak. (These are available to anyone who asks, who emails or calls the Foundation directly or who is already registered with The PBC Foundation)

There are many issues that have come from your post and I shall try to address as many as I can:

1) MRI is not a diagnostic tool. It is used to look at what, if any, cell change is happening within the liver (or any other body part) but not used to decipher which mechanism or condition is causing the cell change. That the MRI hasn't shown up any cell change can only be a good thing.

2) It is against the rules to publicly name your consultant but it would help me look at your next potential steps if you were to message me that information seperately.

3) From memory, you were being investigated for PBC/AIH: what came from that?

4) I personally believe that it absolutely not the GP's role to tell you what to do. Ultimately, it is your body. They can make reccommendations, they can highlight normal procedures, new medical technologies (even medicines, etc) but the decision must be with you. We strongly believe that, as an organisation, we need to give you more information than your GP has (obviously, we would love the GPs to take this information on board) so that you can be involved in the best care decisions for you and your PBC.

5) If liver function has improved with Urso, then it is absolutely worth considering Urso as a long term option.

6) generally speaking, PBC is a long-term condition. I have met many people in their 70s and 80s with PBC. In my time at the Foundation, our oldest member (that I know of) was 103 when she passed away. I have met many people who have been diagnosed 35+ years (with AND without needing transplant). These figures will continue to improve and rise as Urso (and OCA) improve the outlook of living with this condition.

Statistically speaking: those with PBC who respond to Urso will be thought to have the same life expectancy as the general population.

I absolutely understand that 11 months without any kind of definitive answer could be frustrating, upsetting and/or unsettling. Ultimately, it is better to have the right answer than a quick answer.

If we can help you find that answer, or guide you in where to go next and what questions to ask then please do get in touch directly with the Foundation.

Yours,

Robert.