Feeling exhausted

[Flower-powr]

Hi all. Just looking for some advice. Waiting on an appt with rheumatologist in Oct due to high Antimitochondrial antibodies and raised M2. I get so tired some days. Like today my legs just don't want to move. I feel knackered. Then I might be grand again for ages. Is this a symptom of PBC.?

[Sarah4314]

Yes, fatigue is symptom. I am also AMA m2 positive ..but so far my liver function tests are mostly normal.

I saw a heptologist (liver specialist) ...he follows my blood work to see if pbc develops. I am not sure a rheumatologist would be as familiar with the pbc. My rheumatologist I see for lupus told me to go to liver specialist. Just wanted to make you aware because I know how long we all have to wait for those appointments and I am sure you want to know sooner than later. Hopefully, your liver function tests will be normal too. All the best to you

[Flower-powr in reply to Sarah4314]

Thank you for your valuable info. My GP wants me to go to a rheumatologist first. I agree I think a hepatologist is the way to go. My liver function is normal so that's why I'm confused . Is it PBC??? I guess time will tell . Thanks again

[Sarah4314 in reply to Flower-powr]

That's great news...my doctor just watches my bloodwork and I see him once a year. Maybe you will be the same...especially if your lft's are normal. Keep me posted...wishing you all the best. 😊

[Shulsey]

Unfortunately it is😟. Some days I have to force myself to do anything. If I lived alone I wouldn't get a thing done. My kiddos help me want to push, but we also must realize the difference of pushing too much & what we can push ourselves to do. I pushed too mush in the past & ended up in the hospital😒.

Stay strong❣️

[Flower-powr in reply to Shulsey]

Thanks for replying I rely on this site so much guys. I have no diagnosis yet. If I didn't have two small kids I think I'd struggle to bother doing anything. My legs are so tired today and my body is weak!!!

[KarenLeslie]

Unfortunately this type of fatigue is very common in PBC. Some people get relief from URSODIOL. I have tried everything can't say the Urso helps me much.

[jane1964]

Hello I agree with the others you need to see a hepatologist.It was a rheumatologist who found the AMA and they sent me to a hepatologist, my liver function tests were normal at that point but they aren't now,and my initial problems were extreme fatigue and joint and muscle pain.I hope you get some answers soon.Jane

[Flower-powr in reply to jane1964]

Thank you very much for all the advice I'll get on to my GP.

[GrittyReads]

I would talk to the 'PBC Foundation' who host this site. Link to their website at the top of this page, where you will find email and phone contact details to talk to their lovely, helpful, trained advisors. Also their website is a mine of info.

Just having AMA-M2, even if it's high, does not mean you have PBC. I may have had AMAs all my life, but they were not noted until a random blood test for some odd symptoms in 1992. I was then sent to see both a rheumatologist (although I'm surprised they would still do that now, I'd expect the Liver specialist to be first) and a hepatologist. The Liver guy did every test imaginable, and 'liver function tests' (lfts), but all was fine. At that time I was just told the AMAs might mean I was at risk of rheumy-liver-ish condition, but would probably never get it, so to just to have the lfts every year. All was clear, but after 12 years I missed some tests with moving area, and forgetting, but then my new-to-me GP, here, panicked when I mentioned the AMAs. She did more tests and told me I had PBC ... !! Utter panic on my part as it had never been mentioned, so I Googled (worse things to do - ever - as much online stuff is out-of-date and overly scary). However, the new liver specialist I saw said my Liver function tests were normal, still, and I didn't have it, & might never get it. Sadly, he gave me an odd-sounding 'diagnosis' which meant insurance still treated me as if I had PBC.

So, a couple of years ago, I went to see one of the UK's leading PBC specialists, who did loads more tests, and took my medical history and that of my family. He then confirmed that I don't have PBC and will probably never get it. He changed my diagnosis to 'AMAs' only - tho' I still have to have annual lfts. He told me that for a: 'formal/official' diagnosis of PBC according to ' UK/US/Eu diagnostic criteria ' a patient has to have 2 out of 3 diagnostic features: eg:

1) The presence of AMAs (M2) -- (M2 is the sub-type of AMA linked to PBC, other sub-types link to other autoimmune conditions): and/or:

2) Abnormal liver function tests, typical of PBC (he checks ALP and GGT in particular): and/or:

3) A liver biopsy that shows damage to the microscopic biliary tubules, that is typical of PBC.

Most people have 1 and 2, and usually go to the GP with symptoms (tiredness, itching, joint and muscle pain...), plus if there is only 1 or 2, but with symptoms, they might do a biopsy, but with AMAs alone and no symptoms they should just monitor you, so I still have lfts every year. My consultant said he would not give Urso without a full, formal diagnosis. He also told me that blood donor statistics show that about 10% of donors have AMAs, but only about 1.5 - 2.0% go on to develop PBC. Some people just have AMAs. He is one of the UK's PBC experts and I trust him implicitly.

It's possible your GP doesn't know much about PBC - lots of them never get to see PBC, as it is fairly rare - 3 out of 4 GPs in my practice have never had patients with it. However, with AMAs, alone, you should have lft tests every year. Plus, as you are feeling tired, they may do the tests more often to keep an eye on you. However, talk to the PBC Foundation, and try to learn as much as you can, yourself.

Sorry this is so long, but I hope it helps. The tiredness may just be the stress - plus you have 2 kids!! so bound to be tired, but the Medics may offer a biopsy to be sure. Try to not worry, as that will make things worse, but treat yourself: do things you love, coddle yourself and try to de-stress. I hope it all goes well, if it is PBc the treatments are increasing - as I write - with lots of steps forward, and for the majority, it is not the issue that it used to be,

Take care,

Gritty

[swinstan]

Gritty's comments above were the same in my case. Positive AMAs is not a diagnosis of PBC, so I could happily go along not declaring for insurance. Once my LFTs showed elevated ALP and GGT I was formally diagnosed. The AMAs were identified in 2003, but with annual checks, I wasn't diagnosed until 2016. As others have said, maybe your tiredness is because of the worry and the hard work of being a mum. Hopefully it will pass when you feel more reassured.

[Flower-powr in reply to swinstan]

Thank you. I appreciate the info. I dot worry really and won't until I hear more in Oct from rheumatologist. But it's always st the back of my mind but all other bloods are good so fingers crossed.

[Sarah4314 in reply to Flower-powr]

How did your appointment go? Not sure if you updated elsewhere