Is there a connection?

[gallnaemare]

Hi, my first time here.

I have a fairly long backstory to my issues, so if you don't mind, I'll bullet point for ease of reading. I'm a fat, fair, female of forty-nine.

2008 - Severe abdo pain with high Lfts. No Gallstones on U/S. Gastroscopy normal. Resolved spontaneously after 2 weeks. Incidental finding of positive AMA. Thought to have been SOD dysfunction (unusual with gallbladder in situ). AMAs rechecked x2 and sub-typed to Anti-M2 variety.

2012 - More episodes of pain, shorter duration and again with elevated Lfts, but not as high as previously. U/S finding of gallstones, but I refused surgery as didn't feel ready.

2018 - Abdo pain has happened infrequently (2-3 per year) since 2012, but becomes much more frequent and in June I ask GP for referral to surgeon to discuss removal.

The attacks are still short, intensely painful and trigger a sweating and nausea/vomitting response. My Lfts show marked elevations. Into August and the attacks are coming at 2-3 per week followed by dark urine, headaches and tiredness.

My Lfts peak, Alk Phos and Alt are both at c300 and GGT is 1000+, although they do reduce somewhat between attacks of pain.

I see the surgeon in late July and an MRCP is ordered. This apparently only shows gallstones. The surgeon very kindly expedited matters and I had a Lap-cholecystectomy last week.

I know the gallstones have now been dealt with, but I still have questions about the AMA load, 10 years after discovery. My Lfts appear to have gone extremely high, higher than would usually be seen with gallstones (as far as my internet research has shown, certainly my Gp was alarmed).

Do I want to be asking to see a Specialist about the condition of my liver in relation to PBC now? I do not have a formal diagnosis of PBC.

Would PBC have had any role in the formation and severity of the gallbladder disease?

Should I be asking for Urso treatment, even if my Lfts (Alk-Phos particularly) return to normal or near-normal levels?

It's been 10 years and I'm nearing 50 - maybe it's time to stop watching and waiting?

Thanks for any thoughts you might have.

[GrandmaDylan]

I'm not medical and can't really give advice about your symptoms and lft's etc. The only thing I can say is that when I was 49 I got terrible gallbladder pain and needed surgery. I had to wait 6 weeks for the inflammation to go down before they could operate but at 5 weeks I developed pancreatitis which was agonising. I had my gallbladder out and all was well apart from very mildly raised LFT's. I was diagnosed with anaemia in February and in the course of investigations as to cause it was discovered that I have cirrhosis. I am a non smoker and non drinker so I don't know what has caused it. The only thing that I've noticed is the number of people on this forum who have fibrosis and also have issues with their gallbladder. I'm sure that someone with more knowledge will be along with more information. Take care. Deb

[gallnaemare in reply to GrandmaDylan]

Thanks Deb. You were very kind to comment. It's interesting that you've noticed that there seems to be a connection. I wonder why your cirrhosis hasn't been explained? Have you had the autoantibody tests? Mine were tested by my Gp when my U/S scan 10 years ago didn't find a reason for my issues.

[GrandmaDylan in reply to gallnaemare]

I'm quite new to this so I don't know all the medical terms yet. When it all kicked off and I had numerous blood tests one of them I believe was an autoimmune test which came back negative. My gp and the gastroenterologist that I saw privately both think it could be autoimmune as I have another autoimmune disease. Apparently there is another AU blood test which may show that it is AU but although my gp has requested it three times the consultant at the lab refuses to test for it as he thinks it's not necessary. Only my gastroenterologist can insist on it being done but goodness knows when I'll get to see him. He referred me on the nhs for a ct scan which I had done 3 weeks ago but it takes 6 weeks to get the results!

[gallnaemare in reply to GrandmaDylan]

Ah, that's unfortunate and I suspect may be due to cost issues. I know that there are blood tests that the Gp used to be able to request that can only be done by hospital Consultants now, and those tests may well be among them. I know the AMA test used to take several weeks to come back with a result so I imagine it's not a cheap or common test to run.

[Hidden in reply to GrandmaDylan]

6 weeks omg whereabouts in the country is that happening for goodness sakes. When i have mine results next day at worst...

[GrandmaDylan in reply to Hidden]

I've rung my consultants Secretary today and the letter to me is waiting for him to sign. Apparently he's referring me for a capsule endoscopy. At last something is happening. 😉

[Hidden in reply to GrandmaDylan]

Hi goodo.

Can i just say from personal experience and please ignore as appropriate, 🤭

I’ve had three endoscopy’s.

1st - easy peasy maybe a tad uncomfortable but what can one expect!

2nd - something happened to me about 2/3 way through and my blood pressure was about as low as it could go and they quickly started wafting air over me and cold (?) cloths over my head.

Both of these two occasions i had said I had said that I didn’t need a sedative - I laugh in the face of a trivial thing like an endoscope 😬

Next time - guess what - sedative Miles? You blooming bet. I can honestly say I didn’t feel a thing! Mind you I also don’t remember it being done lol.

Anyway ignore me “I know nothing” as my “mate” Manuel would say.

Good luck - it sure is worth having it done from my experience - worst thing is I now can’t have grapefruit, or its juice, fizzy drinks 😪 and, horror of horrors, NO coconut milk/water - my absolute favourite - a litre a day me....

You’ll be glad it was done, I hope. All the best.

[GrandmaDylan in reply to Hidden]

Hi twosmiles, I had a gastroscopy and colonoscopy done at the same time a few months ago. Bogof offer 😳 I had sedation and was fine. The capsule endoscopy is literally that...a camera in a capsule that you swollow and it records it's transit through the intestines. Apparently there are signs of narrowing or an obstruction that has now cleared. I can't help but think of that old film "inner space" where they zapped a submarine full of experts and injected it into a persons body! Plus I'm wondering if once it's done its "journey" I'll have to recover it and take it down to Max Spielman to have it developed. 😂

[Hidden in reply to GrandmaDylan]

Hi dy

Hahahaha 😀😀😀

The mind absolutely boggles. I neve knew that could be done - mine was standard camera at end of flexible shaft. Did you recover it, or is it destined to film you for life 🤪😛😜

[gallnaemare in reply to GrandmaDylan]

My Mum had the same experience - I christened it the 'Kebab Procedure'

[Hidden]

Hi gall

Welcome to this great website!!

I am afraid your issues are way over my head but such is the knowledge on here i am sure someone will be able to comment!

gall, you have used so many acronyms that to some we don’t (me anyway) know what they mean...

We have a glossary which has been set up by the one and only AyreshireK. If you have time can you please send her a message with the acronym meanings. Thanks!

Good luck.

[Hidden]

Hi again! Also, for a bit of fun can you please tell Brett11 the origin of your nickname (only if you don’t mind).

Brett11 said

How did everyone create their usernames?

Brett11

Brett11•

4 days ago•120 Replies

[GrittyReads]

From my experience of having to have a 'false' diagnosis of PBC overturned, I have learned a lot about PBC and its diagnosis, with lots of help from the wonderful UK-based 'PBC Foundation'.

So, I would check out the 'PBC Foundation', they have a site here on 'Health Unlocked' and the site is amazingly informative, with far more info if you join - and it's free! Plus, their trained and lovely advisors can help you - phone or email. It is a UK- based charity, and their information and help is beyond compare. In particular, on the website they have a copy of the recent UK/Eu official/formal, 'diagnosis guidelines' on PBC, which was debated, decided and produced by all the leading PBC Experts, and which all UK/Eu medics and liver specialists should be following.

Formally, for a diagnosis of PBC, 2 out of 3 of the following diagnostic criteria have to be present. They are:

1 - presence of AMAs (usually AMA-M2) … and / or:

2 - abnormal lft readings, over a period of time, which are typical of PBC … usually high ALP, GGT, ALT. (NB these can go up and down, but should be closely monitored and never be ignored) ... and / or.

3 - a liver biopsy that shows damage to the microtubules of the liver, that is consistent with PBC.

I would contact the 'PBC F' join, talk to them, and read all their site. However, from what you say, about your results, over time, it does rather sound like PBC. I don't understand why you have not seen a leading heptolagist. Plus there are wonderful PBC specialists around. I would ask to see one. [I'm in the UK, in Devon, but I went to see a leading PBC chap in Birmingham, to have my false diagnosis overturned - and all on the NHS]

Sorry it's a bit of a dour response, but urso does help people with PBC, hugely, so that PBC does not have to be a grim diagnosis, plus there are also other treatments now, if urso does not suit you.

Hope this helps, but I would kick some ass with your Medics.

Take care,

Gritty

[gallnaemare in reply to GrittyReads]

Thanks Gritty, your reply is really helpful.

I actually joined the Pbc Foundation 10 years ago when I first had the positive AMA diagnosis and still receive their publications. They are certainly the group to follow for PBC. I have followed their activities recently because I had pushed the issue to the back of my mind.

The thing is, over the years my Gp hasn't been remotely interested in the AMAs. I just have my Lfts checked annually alongside my Thyroid bloods. As they've usually been near normal (other than during episodes of gallbladder pain) there's never been a reason to refer me onwards. I've only ever had the AMA part of the triad of diagnosis, although I do have Xanthelasmas on my eyelids but these were put down to high cholesterol.

I don't know if my extreme biliary-related blood tests recently point towards background PBC deterioration or just a bad case of gallbladder disease. If they settle back down to normal levels now I've had the gallbladder out I guess we go back to annual blood tests from the Gp. I haven't been referred to a PBC specialist and it's never been mentioned. I'm in Scotland. I'm fed up of waiting to see if this disease is going to appear and second-guessing symptoms as they appear.

Maybe it's time I got a bit more pushy.

[gallnaemare in reply to gallnaemare]

* I haven't follwed their activities (re PBC Foundation)