GP unsure about blood and FIT results

[Helen427]

Hi all,

I have been reading a number of threads on here and have already learnt a lot, far more than my GP had to offer!

I've been suffering with severe fatigue, itchy dry skin, dry mouth, Osteopenia and stomach/gastric related issues for absolutely years, it was always fobbed off as IBS and/or anxiety. I finally complained to my GP practice earlier this year and had a lot of tests done, specifically an AMA test and a FIT test.

At my follow up 2 weeks ago my GP said my results "didn't indicate much" but they would speak to another GP and I can book another appointment for 3 months time. I felt a bit abandoned at 3 months for someone that's been so unwell! I requested a copy of my test results and started carefully doing my own research and that's why I am here.

I appreciate no-one here is a GP but can anyone help me with my results please, sorry they are quite long but these are all the ones flagged as red (abnormal), I'm in the UK. Thank you

27-Nov-2024

Liver autoantibody level - (mez) - Make appointment with Doctor

AMA-like pattern seen in rLKS tissue please refer to Extended Liver

Autoantibodies results.

Mitochondrial antibody level Positive (titre 1:160)

Anti-LKM Antibodies Negative

Anti-Smooth Muscle Antibodies Negative

Parietal cell autoantibodies Not reportable - masked by AMA

Liver antibody profile - (mez) - Make appointment with Doctor

Please refer to the laboratory portal for further information

regarding this test. Please correlate with Liver Autoantibodies results and clinical

presentation when interpreting these results. Manufacturer's kit insert states that equivocal results should be interpreted as raised but negative.

! Antimitochondrial autoantibod. Strong Positive

! M2-3E (BPO) Weak Positive

Sp100 Negative

PML Negative

Gp210 Negative

LKM-1 Negative

LC-1 Negative

SLA/LP Negative

! Anti-Ro52 Equivocal

27-Nov-2024 Nuclear autoantib screen test - (mez) - Make appointment with Doctor

Cytoplasmic staining seen in Hep-2 cells, please refer to Liver

Autoantibody results.

Nuclear autoantib screen test Negative

HEp-2 nuclear pattern Cytoplasmic staining present

Rheumatoid factor - (mez) - Normal - No Action. <10.0 IU/ml <14.00IU/ml

27-Nov-2024 Serum folate - (mez) - Normal - No Action. 4 ug/L >3.00ug/L

! Serum C reactive protein level - (Mu235543) - Acceptable - no further action

6 mg/L <5.00mg/L

[DonnaBoll Administrator]

Hi, Helen! I 'm so glad you reached out. Sounds like the GP is just floundering and knows nothing much about PBC. I saw that your AMA was strongly positive. Did you have a liver enzymes'panel done? alk phos, AST, ALT, bilirubin specifically? That what needs to be done for sure. If you have a + AMA and elevated liver enzymes, then is in most cases that is enough for a PBC diagnosis. I am so sorry that the itching and fatigue are so bad. Both of these symptoms are so indicative of PBC..... is there a liver specialist (hepatologist) you can see? Do you live anywhere Newcastle University? The leading PBC expert in the world is there... Dr. David Jones. I would strongly suggest you purchase his book, Helen. The Definitive Guide for Patients Who Have Primary Biliary Cholangitis. It is nothing short of all you need to know about PBC. You can get it on Amazon. I would sure get another doctor. You might ask here if someone else can suggest someone depending on where you live. Please let me know how things are going for you.

[Helen427 in reply to DonnaBoll]

Hi Donna, thank you so much for replying and with all the useful help and tips too, I have popped the book in my watchlist to get after the Xmas bustle. I had an abdominal CT scan with contrast done back in the summer, which was a few months before my 'strong positive' AMA test, the report stated I had a small (could be a) cyst on my liver but the rest of my liver looked "unremarkable", I had a kidney and liver function blood test in August 2024 which was normal it only consisted of Serum ALT 14, Serum total bilirubin level 6, plus everything else on my CT scan was ok except mild diverticulitis in my bowel and a small ovarian cyst. My local hospital is so stretched with huge wait lists often close to or over a year and many departments have just closed completely due to roof damage from the recent storms. I have been referred to Immunology as my blood tests throughout this year (and years before) are always up and down showing different abnormalities each time, so I'm not sure what immunology do. I live in South Wales but would travel to get to the bottom of whatever is wrong, you have to be a seriously strong advocate for your own health these days! I was told the extreme fatigue was long covid and the itching was perimenopause (I'm 44). I'm trying not to panic as I know that a +AMA can be indicative or other things, plus I recently had a course of medication when those bloods were done for the AMA which can affect your liver (Fluconazole). Either way just an answer would be great rather than a year+ of unknown guessing!

[Giraffe44]

Hi Helen

Sorry to hear you’re unwell . You need some answers to help unravel your symptoms and test results. Donna is absolutely right, the PBC foundation is a wealth of accurate up to date information. I would strongly recommend you contact their helpline, they will be able to point you in the right direction. I am sure they will be able to give you a list of clinicians in your area. Best of luck, as you say we must be our own advocate, so persevere.

[Helen427]

Thank you Giraffe, I think I'll go back to my GP in the new year and maybe ask for a repeat AMA test, a full liver function test and also the ANA test to look for auto-immune markers. Then take it from there with results. I will contact the PBC foundation as well and get my ducks in a row prior to those test results. Thank you 😊

[DonnaBoll Administrator in reply to Helen427]

Great plan! yes, for sure get that liver function test done. Sure wish you could get in to see a liver specialist. So many GP docs just don't know about PBC- not enough to manage it.