PBC Foundation
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Not yet diagnosed but feeling awful

Hi,

First post here. I have struggled with exhaustion for over a year had numerous tests including tests for sleep apnoea etc but all negative. Felt like giving up but eventually went to a new doctor who did some different tests and found the AMA antibody and apparently also the specific M2 marker for PBC. He has referred me to a specialist which I am seeing next week which is great but I feel like I am pinning all my hopes on this specialist being able to help - not sure what they will do at this appointment?

Also I have had to be signed off for two weeks as I am feeling progressively worse and worse - exhaustion, aches in lots of my joints, dry mouth and sore sticky eyes. The GP I spoke to - a different one from before - signed me off but said it was unlikely to be the PBC as my liver function tests were normal.

My question is can I be really affected by the PBC despite my tests being in the normal range? I am really struggling and desperate for answers!

Back at work now due to money issues but feeling awful - thanks for any advice you can give

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Hi there

Sorry to hear you are not feeling well at the moment. Yes you can feel unwell even though your bloods are normal. The stage and progression of this disease does not always correlate with the blood levels. I've had pbc since 2012 and bloods are normal at mo due to being on a drug trial but still have really bad days. Hope things get better for you soon and don't stress.

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Hello when I was diagnosed my main symptom was extreme fatigue and at that time my liver blood tests were all normal but I still felt dreadful.I think the diagnosis normally requires abnormal blood tests and my doctor watched me for a couple of years before prescribing the treatment when my blood tests became abnormal.I still have the fatigue but I have learnt to manage my energy with pacing and getting help a cleaner and a gardener.I also found being more open with my family helped it meant they helped more and got less frustrated.I have had PBC for around 13 years now diagnosed for about 10.When I was diagnosed my family were young and I too had to work but over time I reduced my hours and then switched to an easier job.and this year at 53 I gave given up work .If I was well I would definitely have carried on but for me it's been the right decision I have developed two other autoimmune diseases.I hope you don't have PBC but if you do it does get easier once you know what your dealing with and learn how to manage.Jane.

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What other autoimmune diseases have you been diagnosed with, if you don’t mind my asking.

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Sjogrens syndrome which my doctor says can be associated with PBC,and ANCA vasculitis which apparently isn't associated with PBC except for that if you have one autoimmune disease your more likely than a healthy person to get more.Ive recently started Azathioprine for the vasculitis which is helping a lot.Jane

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Thanks for your both of your replies. Good to know that the liver function tests can be normal but still be affected as I felt like I was making this up almost! Its difficult not to stress as its so worrying and work is yet another stress as although its a desk job its complex and if I make mistakes they could be costly - difficult to not make mistakes when I am so exhausted.

Money worries mean I need to work but I am almost at the point of considering reduced my hours as my health is more important - I am a single parent so no back up from a partner for money problems but I may have to.

I am 50 in a couple of months and quite scared of feeling like this forever but hopefully if I am diagnosed I will be able to learn to manage things better - thank you both for replying I have been reading this forum for a few weeks and it has been so helpful and supportive.

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Sorry you are not feeling well. It is a challenge to deal with all of this. Insufficient levels of vitamin D can cause joint aches; maybe have the next doctor you go to order the test for you if it hasn’t been done yet. Try some over the counter lubricant eye drops like Refresh or Genteal marketed as natural tears. They are supposed to help with dry eyes.

I think the Specialist you see can address your issues or refer you to another doctor who can depending on his/her assessment. He/she will probably order more in depth tests to pinpoint the issues.

Not sure if doctor will suggest a biopsy; seems like based on the 2 pbc blood markers, you can be diagnosed based on that alone for PBC.

Hope you get answers soon.

Haley

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Thanks Haley I will look into those eye drops as I am at the computer all day and finding it quite painful at the moment.

I don't know if I was tested for vitamin D so will mention that when I see the dr - I did feel better when I was out getting some sun when we had the lovely summer weather but the last few weeks has been a bit miserable up north and I am feeling worse every week.

I am hopeful they will be able to give me some answers next week - fingers crossed!

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You should make sure you get a copy of all your tests to take with you to the Specialist. This way he knows what’s going on thus far unless the doctor who referred you already sent it over. I find that when you are dealing with multiple doctors, best you have copies of all your medical tests/records. I don’t want the doctors repeating tests that were already done.

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Sorry you have joined us not welcome. You will find a lot of support on this site as most of us suffer the same ailments and it’s scary when you first are diagnosed. It’s good your levels are normal range it’s the AMA amongst other indicators that lead towards the PBC diagnosis I believe. Maybe worth mentioning to your employer your condition (hope you have a decent one) you maybe could be relieved of some stress. As always my advice eat healthy don’t drink alcohol take little exercise ie yoga Pilates stretch etc and rest when you need to. Good luck and keep us up to date

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My message was supposed to say SORRY YOU HAVE JOINED US (due to your condition) BUT WELCOME must read before I post

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Most of us are low on vitamin D. My specialist had me on prescription megadoses of D for a month. Now maintaining with over the counter D3, 2000 iu’s daily.

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Hi mpetal,

Sorry to hear you're joining us on this roller coaster but glad you found us! I am always tired and cold lately. I recently found out I am anemic. Have them check your Vitamin A, E, B and Iron. If you are iron deficient especially, it will cause the exhaustion. Apparently our bodies have issues absorbing vitamins like "normal" people is what I was told. Good luck!

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Thanks all for your replies - I have had my iron levels checked as I was anaemic 2 years ago so they thought it was the same thing this time but unfortunately not as that was quite easy to solve! I will ask about the other vitamin levels as not sure about them.

Biddyb - that made me laugh but thank you for the welcome. I have had to mention it to work and they are supportive but the sick pay here is not brilliant so I have had to struggle in as much as possible. I have stopped drinking completely and improved my diet hugely so hopefully that will help. Stress is more of a problem but will deal with that after my consultant appointment when hopefully I will have some answers.

Will get to boots at lunchtime and look for Vitamin D - thank you

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Just having the AMA-M2 marker is not enough for a diagnosis of PBC, some people (about 10% according to blood donor statistics) just 'have' AMAs, with only about 2% of those going on to get PBC. However, you do need regular lfts testing, at least every year, maybe more at first, and you may still develop PBC. It's also not appropriate to have PBC medication until you definitely have got PBC and your lfts become raised.

However, with all your debilitating symptoms, there is obviously something going on, which your Medics should be doing everything to sort out. People who get one autoimmune disease - such as PBC - often have others, so your Medics should be checking you for all possible conditions. Eg: the sore, dry eyes and mouth could be Sjorgrens syndrome, a common autoimmune condition which occurs in the elderly and in those subject to autoimmune issues - eg a lot of people with PBC also have it (tho' that doesn't mean you are any more likely to get PBC). Also, as others have already said, some of the symptoms you talk about could be related to vitamin or mineral deficiency. Eg: people with PBC often have the aches and pains you mention, because it causes a reduced absorption of Vitamin D, so bones and joints become affected.

So, you should be thoroughly tested for all other common autoimmune conditions related to the symptoms you have, and you also should be checked for all other liver issues; and you need checking for any vitamin or mineral deficiencies. I'm surprised all this has not been done, as my lovely GP made sure I was tested for everything - even Lymes disease - as I'd recently been walking on Skye and had been worried about the ticks that cause Lymes. However, with just AMAs you are unlikely to have PBC, and may never get it - it's been known I have AMAs since 1992 and I'm still in perfect health - just getting a bit creaky! Also, have fun, treat yourself, try not to get anxious - always worse for any condition, especially autoimmune ones!

Hope this helps,

Gritty.

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Hi Gritty,

Thanks for your advice which is also what my doctor said - he thought it could be pbc but it cant be diagnosed just from the ama test etc. Will see what the consultant says and let you know.

The GP was very thorough i think my memory is just shot at the moment - he tested thyroid, lymes disease, glandular fever and even got me a chest xray to check re tb so i think he has been thorough. Just need to check about vitamins etc.

Thanks again

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Hi mortal, if your eyes are hurting using the computer try reducing the brightness then the contrast. The default brightness settings on most monitors are far higher than is required for an office environment and many people do develop eye strain because of this. If you are in the U.K. your employer has a duty to perform a workstation assessment. If you do this correctly it may make a huge difference to how you feel.

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Sorry Mpetal my iPhone decided to change your name😕

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Thanks for all your replies. I have now seen the consultant who has confirmed that I definitely do have PBC - he said there was no doubt - I asked about a biopsy but he advised that as my liver function tests are ok at the moment there was no need for one.

He will write to my doctor and advise him to prescribe urso for me. To be honest he didn't really give me a lot of information - if I hadn't already found this forum I think I would have been very under prepared for the diagnosis although it has still knocked me for 6.

Have to hope that I am in early stages - forgot to ask about whether I can have the odd drink or two - I haven't since the dr found the original antibody but its my 50th shortly and I would have liked a glass of something sparkling to celebrate but not sure if I can. Will check with the gp possibly to see what he says as he seems to be quite clued up.

Anyway I will no doubt be using this board quite a bit in the future!

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I have a glass of prosecco or wine every now & then; not often though. My Hep was okay with that. But I guess it depends on your particular pbc circumstances.

Sometimes what I do is put like 2 ounces of wine and add sparkling water to it. It is almost like a real drink!

Have a lovely birthday!

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