Primary Biliary Cholangitis linked to other aut... - Thyroid UK

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Primary Biliary Cholangitis linked to other autoimmune diseases any advice further research I could get my hands on?

4 years ago•6 Replies

Hi there everyone 😊

A while ago my doctor ran some tests regarding liver and hormones as well as the thyroid basic TSH and Free T4 ( I call it the ‘medical catchphrase’ version as no other information gleaned). Needless to say I will be doing another private thyroid test on myself soon to get more complete picture.

So there is nothing really that stood out apart from the fact I had an elevated ALT.

All other lab results for liver tests were in range.

The top line feedback from labs was ‘satisfactory’ for liver - BUT I did a bit of reading on ALT which brought me to AMAs - Antimitochondrial antibodies. There is a growing body of evidence with regards to the link between Hypothyroidism and Primary Biliary (cirrhosis) Cholangitis. PBC is an autoimmune disorder that attacks the bile ducts in the liver - people can be symptom-free for many years before problems start to arise. It would appear this is not a trivial disease. Looking at the stuff I came across there seems to be a fairly strong link between PBC and other autoimmune diseases. A very high percentage of people who have PBC also have AMAs - and one particular type of AMA is specific to PBC so the presence of these antibodies is used as a diagnostic tool.

Anyway

ALT - Range quoted was 0-35. I came in at 55 perhaps on it’s own not a big deal, there are lots of things that can explain away a raised ALT. However, bearing in mind the association between the autoimmune disorders perhaps this requires further investigation?

My GP has already proven she has a limited ability to interpret lab results, so I’m wondering if I should flag this, or just take the hit financially (again) and go get a private test to see if I have antimicrobial antibodies AMAs.

South Tees NHS seem to have identified the association between PBC and other autoimmune disorders and I have found some research which is quite good - data seems good and highly statistically significant! (1994) The author is suggesting that because of the prevalence of the two autoimmune disorders being found together in people that it might be wise to start screening. See link below. I’m not wishing extra problems on myself, but I feel it will be missed/overlooked and if I do something now, if I have got a problem, I can take steps to mitigate any deleterious effects.

I have put links to the sources I found below.

southtees.nhs.uk/services/p...

pubmed.ncbi.nlm.nih.gov/797...

mayoclinic.org/diseases-con...

There’s more out there….

Would really appreciate someone to give me some feedback on this

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Charlie-Farley

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6 Replies

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Clarrisa4 years ago

Based on my own experience I would thoroughly review the side effects/adverse reactions, if you haven’t already of every medication you are taking.

When I was on a proton pump inhibitor a liver enzyme or two elevated. I went to a G.I. doctor who carefully tapered me off (over weeks) of this drug & my liver enzymes returned to a normal range.

My physiology instructor said to always start by looking at your medications first. If you already have please disregard this advice.

Charlie-Farley• in reply toClarrisa4 years ago

Hi Clarissa

Hi no I haven’t looked at this but I was taking the odd omaprozale I think around the time of the test - it is certainly one thing to consider. Being better medicated for the under active thyroid and going gluten-free I’ve only had to resort to 1 omaprazole in the past month. Thank you for that!

tattybogle4 years ago

if it was me i'd give it a few months ? and ask for the ALT to be rechecked, before i went looking for the antibodies. Did you find any examples of how high ALT results were, in patients who do go on to have primary biliary cholangitis ?

..... sometimes you can find 'case studies' .... it might be that they haven't remarked on your ALT result yet because 55 is not high enough to be a worry ? you might (hopefully) find that it's not a real concern unless its been in the hundreds consistently.

But you've peaked my interest so i'll have a look too... try not to worry yet...."One swallow does not a summer make".

Charlie-Farley• in reply totattybogle4 years ago

Hi TattyTo be totally honest I’m not even that worried for myself. I have found other ranges quoted for ALT as up to 55. Borderline?

Having hypothyroidism put me at an increased risk but it does not mean I will get it. However most GPs are not familiar with this autoimmune disorder apparently according to the PBC forum. Also PBC frequently gets confused with fatty liver disease, leading to miss diagnosis.

I’ve joined a PBC forum to gain more information. I’ve also looked on the PBC foundation to see if there is any information on the occurrence of PBC with other autoimmune disorders couldn’t find anything at first glance - but I will be returning to it.. The South Tees NHS website has information specifically on PBC and is quite clear about antibodies and also the connection with other autoimmune diseases.

I am not trying to scaremonger But conditions are being studied in parallel and there is rarely sufficient crossover to fully understand what’s going on.

People with PBC have a greater likelihood to have another autoimmune disorder - does that work both ways? I think it really depends on which gets diagnosed first.

I am in no way suggesting that everyone who has PBC will also have Hypothyroidism, nor that everyone who has Hypothyroidism has PBC . ABSOLUTELY NOT 😱. Still looking at the info so far it seems the presence of one indicates the greater possibility of the other as compared to people without autoimmune diseases.

This is based on successful diagnosis by the medical profession of course - how many undiagnosed and misdiagnosed in both areas we cannot say.

Needless to say I am an inquisitive soul and it has peaked my interest as well. Apparently they describe PBC as a common rare disease - my question is is it commonly rarely diagnosed? !

tattybogle• in reply toCharlie-Farley4 years ago

From this one pubmed.ncbi.nlm.nih.gov/797..."Anti-thyroid microsomal positive sera were collected from 351 selected female patients .... antimitochondrial antibodies were found positive in 7 cases .... Six of the 7 patients were asymptomatic and 4 had normal liver function tests. Liver biopsy was carried out in 2 patients and fulfilled diagnosis criteria for primary biliary cirrhosis. Six out of the 7 patients had Hashimoto's thyroiditis (2 biopsy proven, 4 clinical and biological diagnosis). "

Which suggests to me that most of the people with primary biliary cirrhosis had TPOab with evidence of hashimoto's damage... but most of the people with TPOab (anti microsomal antibodies) did not have AntiMitochondrial antibodies .

However.. my brain is all over the place today. So not sure if i've understood what i'm looking at.

I did just find something saying 'mildly elevated' ALT is considered as up to approx 5 x the top of the normal range ( ie. >150 ish ) .. but i've lost it now . So 55 is probably not a worry in itself.

Most conditions i've looked at in relation to associations with auto-immune thyroid.. give me the impression that's it's a pretty one sided association... if you've got the rarer autoimmune 'whatever you're researching' .. you are quite likely to also get / have thyroid autoimmunity.. but if you are among the huge number of people with thyroid autoimmunity most of you won't ever get the rare thing as well. ... probably

Charlie-Farley• in reply totattybogle4 years ago

Hi Tatty

I’ve pretty much discounted the possibility that there’s anything particularly wrong with me it’s more now that I want to know more. That information that you’ve just quoted above does seem to be exactly as you say more a case of people with PBC being more likely to have Hashimoto’s than the other way around.

The PBC association with other autoimmune disorders wasn’t limited to hypothyroidism either. I must admit I’m very interested in this because there seems to be certain crossovers. I think I shall continue to investigate🧐