PBC diagnosis

[Lindymarie]

Hi all, I've just been diagnosed with PBC. I havnt felt tight for a number of years and thought this was due to thyroid. Now I've been informed my thyroid and pernicious anemia are the causes of my PBC!! I'm awaiting a scan and endoscopy and won't be seeing the consultant again until 30th November.

[Hidden]

Hello Lindymarie.

I doubt very much that you have developed PBC due to your thyroid issues and pernicious anaemia as these are 2 different things.

I'm obviously no medic but in PBC there are other issues that we can have that are not connected with PBC even if they utilise (for want of a better word) certain organs that are also at war with PBC.

I can't say much about the 2 issues you are experiencing as I've not got any of those issues, only PBC. All I know is that you can have thyroxine for thyroid issues and something you can take for the pernicious anaemia but not sure what.

Certain medications can alter the liver function test (LFTs) that we have taken at intervals to check on the PBC but can't say in your case.

[Lindymarie in reply to Hidden]

Hi Peridot, I have a vitamin B12 injection every 8 weeks for my pernicious anemia which I have been having for about 20 years!! I'm not on any medication for my thyroid as it has been over active! Under active, border line and Normal !!! The liver specialist whom I saw last week informed me that the PBC is due to the above!!! The last time I saw my consultant for my thyroid I was supposed to be having radio iodine for my thyroid but it was a different consultant and he told me it would do me more harm than help as my last results were normal. When I got upset and told him that something wasn't right he did more tests and this is when they found abnormalities with my liver!! So I was referred to the liver specialist. To be honest I'm no further on until I have the endoscopy and scan . I have appointments for them and then on the 30th November I see the liver specialist and she is going to decide what treatment I will need. So I am in the dark until then. Many thanks for your reply 😀

[Hidden in reply to Lindymarie]

Hello again Lindymarie.

Back in early 2011 when I saw the consultant following his diagnosis of PBC December 2010, he said it wasn't known how acquired and it is auto-immune. There are a few theories but as yet nothing specific that seems to link everyone. I was just informed it tends to affect women over 40 but with just a very small percent of the male population (it is opposite in the other liver condition known as PSC).

Hope you get more answers later in the year. If you are in the UK I expect you'll either have started ursodeoxycholic acid (urso for short) or will be prescribed it as that seems the norm currently in the UK for PBC. (In the USA you might have heard that there is a new medication for PBC, known as OCA

but I can't respond here as I'm in UK and not currently available.)

[Lindymarie in reply to Hidden]

Forgot to add that on the NHS website it does link pernicious anemia and thyroid to liver issues!! But like I say this is all new to me as well as a shock!!! I'm living in the UK. North East 😀

[Hidden in reply to Lindymarie]

Hello Lindymarie.

I'd be interested to read this info. Have you the link?

Managed to find the anaemia on NHS. Notice it is auto-immune and it is said that with having PBC it is often found that a patient can have other auto-immune conditions. I know a common one of here with PBC seems to be dry eye and mouth that I think is known as Sjorgen's Syndrome.

[Lindymarie in reply to Hidden]

Hi Peridot, just type in primary billiary cirrhosis and tap into nhs sight . I don't have dry eye or dry mouth as yet. And I havnt itched for a few month. I'm going to see what my results are today about my thyroid . Take care😀

[Hidden in reply to Lindymarie]

Hello Lindymarie.

I have just found the article you mentioned here. I understand it differently. It does state final paragraph:- "It is not known what causes the immune system to malfunction and attack the bile ducts."

Then it goes on to mention other auto-immune conditions people might be likely to acquire if they have PBC.

It goes on to state that 'possible causes to trigger PBC may be...' but reading them, I've never had a urine infection pre-diagnosis (I have found since taking the urso I actually find I visit the loo a lot more during the night but think this is due to itching and not sleeping and I get up out of habit as the itch subsides a short while), don't think I've had an infection after diagnosis, not had HRT (never had any female cycle problems and at 52 still not completed the change as yet), never worn make-up and nail varnish, well not something I've ever really used much (as my hands are in water a lot, done manual jobs, etc), I've never been a smoker though my parents were and I do not live near toxic waste dumping ground.

[Lindymarie in reply to Hidden]

Hi Peridot. I've never had urine infections I don't use nail varnish remover frequently! I do wear makeup. I've worked with chemicals for many years! And I'm a smoker. I want to my appointment earlier and saw yet another different consultant ! That's 4 over the last 18 months. Anyway he informedme that I don't have thyroid!! It has been normal for 6 months therefore I will have another appointment in 4 months time and if it still shows up as normal I will be discharged. He also told me that I may have had a viral infection and this could if caused my thyroid to go high then low!!! But the liver consultant tells me that my PBC is caused by my pernicious anemia and Thyroid. Eeee do they really know or just guess. Just as well I didn't have the radio iodine!!! Don't get me wrong I'm happy that I don't have thyroid but I will feel a lot better when I've had my tests for PBC and see my liver specialistin November. The mind is boggled habha . 🤔🤔😬😳😉

[Lindymarie]

Hi Peridot,

Thanks for your info. I'm seeing the consultant tomorrow, the one who did the blood tests that showed up PBC. It's regarding my thyroid so I'm going to ask him a boat load of questions!! Poor man!! Ha ha. Take care 😀

[Hidden]

I think the link is they are both auto immune conditions its not that the thyroid causes liver disease, or visa versa. It is said if you have one auto immune condition you are more likely to have another one. I don't know the percentages I think the NHS site may give those.

For example I have PBC and sjogrens but neither condition caused the other the only link is they are both auto immune conditions. Let us know how you get on.

[Lindymarie in reply to Hidden]

Will do Candy 12. Do be honest this has been going on for years and the tests!! At least I now know I'm not imagining that my body is telling me something isn't right!! Ha ha. Thanks for the reply 😀

[Lexi_Img]

Sorry to hear about your Dx. Of PBC. This is a good group for support. They have all helped me. Let's us know how your tests go.

Hugs

[Lindymarie in reply to Lexi_Img]

Thanks. I will do X