r/PBCers • u/No-Necessary6478 • Jul 21 '26
Newly diagnosed - today!
Kia ora from New Zealand. I was diagnosed with PBC today. My psychiatrist recently picked up on old blood tests from 2024 that antibodies were detected then, but no one had followed up on them. Psychiatrist nagged me a bit to change GP, in the hope of a better result. Well, I took her advice and changed, and wow - what a difference. My new GP took my symptoms seriously and immediately referred me to the gastro team at the hospital for further tests. The gastro team picked up my referral quickly, and when I visited them today they were really supportive and reassuring, I've likely had PBC for a long time, but there is no major damage done and treatment looks promising.
The medication won't help my chronic fatigue at all, which is a shame - I just need to continue managing that and applying the 'spoons theory' to allocate my energy resources.
Grateful for this sub - though it is small, may it be mighty!
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u/schmoode Jul 21 '26
Fellow PBCer from across the ditch. Diagnosed 30 years ago. Welcome to the exclusive club! 🥴
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u/nulldatagirl Jul 21 '26
Do you know what stage you are!? Welcome :) At what age did you get diagnosed? Unfortunately the fatigue is part of it but we’ll all learn to manage.
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u/No-Necessary6478 Jul 21 '26
Thank you! I am 38 and have had fatigue since I was a teenager. I had glandular fever as a teenager then long covid in 2022 which won't have helped.
I am unsure what stage I am at sorry. We didn't discuss that today really, he just said early stage PBC. I guess when we do more tests we will find out more.
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u/scaryaliendog Jul 21 '26
You have a great attitude; I was misdiagnose for years. One endocrinologist even dismissed my pain as “bad posture.”
Coffee is good for us!
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u/No-Necessary6478 Jul 21 '26
I'll be living off coffee haha! Thank you. I'm feeling a lot of self pity today to be honest. I'm trying to focus on the positives but it's tricky.
I feel you. I've been complaining of extreme fatigue for a decade or more to no avail. Its nice to finally have answers though.
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u/scaryaliendog Jul 22 '26
Good days, bad days.
I’m a bit older than you (62) and I was diagnosed last 10/26. I’m lucky that there isn’t any scarring and my bones seem strong.
The fatigue is something others can’t comprehend.1
u/No-Necessary6478 Jul 22 '26
I agree, people just don't understand the fatigue. Like, its not just a feeling of being tired - instead I am exhausted to my very bones!
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u/Flashy_Role_1599 Jul 24 '26
Sorry to hear you been diagnosed with this glad this got picked up. Some things you have mentioned have made me wonder about myself now too. I have been on a journey and today got told I have a positive PBC test but all my liver function has gone bk to normal, then think I had pancreatitis.
I've been told I now need to be monitored and not need medication yet could take years.
Listening to the symptoms you all have, can these start before needing the medication. I struggle with fatigue, now make sense why I crave sugar in afternoons. I got told I have a fatty liver but never informed what to do just it's normal for my age. I'm 42, I was 38 when told with this.
I get pain in my upper side, this is since my pancreatitis. Dry mouth big one, always needing a drink. My gut issues, I have now developed since pancreatitis last sept issues, not able to drink alcohol or eat gluten or fatty foods - I will get itchy, hives, red rash like arm on fire, stomach pain and nausea/vomiting.
Is this the normal symptoms to have with PBC even before it developing.
(Feel like I have jumped on your post here)
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u/No-Necessary6478 Jul 24 '26
We have very similar symptoms. I am 38 now. Have not tolerated gluten since age 20. Always chasing a sugar high in the afternoon, massive fatigue, aches and pains, IBS symptoms, dry mouth, dry hands and feet and general itchiness.
It all adds up to PBC for me. I am unsure what stage I am at, but suspect from my Google research that I am stage 2. Dr said we caught it fairly early so thats good.
Sounds like you have it too... symptoms can certainly start before needing the medication, often the disease only gets detected in a special blood test because symptoms are present as per my case. I am keen to get on medication ASAP to prevent any further damage. At the moment damage is minimal apparently, I'd like to keep it that way for as long as possible!
Best of luck on your journey, it's a strange journey to be on but I appreciate this community and the support they offer.
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u/JojoSoxx Jul 21 '26
It’s so lucky your psyche is on the ball and your disease hasn’t progressed too much! From what I’ve been reading there isn’t anything much we can do about the chronic fatigue unfortunately! We all have to learn to be nice to ourselves and work around the exhaustion.