Panicking like mad! AMA positive!

Sorry for the long post. First I want to point out that I have diabetes type 1, diagnosed October 2005.

I have had pain in my ankles on and off for a few years but this year the flare ups have been very bad with pain occasionally in my wrist. So I paid privately to see a rheumatologist in August and he sent me for blood tests. When I went for my follow up he said that I tested negative for rheumatoid arthritis and said he would arrange a scan on the NHS.

Then around 8 weeks ago I started having seizures, fully conscious just starting into space and with body jerks. I'm also convinced that excercise brought these on. Again I paid privately to see a neurologist and an MRI and an EEG. MRI was clear and the EEG had some abnormal brain activity but not indicative of epilepsy and so he said that ithey were probably Non epileptic seizures called dissacotive seizures to do with the nervous system. So, I'm now waiting for a sleep deprived EEG.

Then last Friday I had a letter from my rheumatologist regarding the bloods I had done in August which said ' your bloods have come back showing an antibody against mitrochondia which can be associated with arthritic pain and also some liver complaints all though your liver bloods are normal at the moment'. I was shocked that this had took him so long to send out so I managed to get in touch with hike and he said that it is probably nothing to worry about but he said he would arrange a liver scan as a precaution . So, I am paying privately for one on Thursday 18th Dec and hopefully I will have the results on the day.

So, I have had a read and obviously I am aware that antibodies against mitrochondia could be an indicator of PBC, so I'm out of my mind with worry going to this scan! The consultant did say that the levels were low and that I tested negative for smooth muscle antibodies (think that's whT it's called).

I know I only have to wait 2 days for my scan but I'm so worried as I have 3 children and I am thinking the worse.

Is there any chance that I could test positive for these antibodies and nothing could come of it?

Any help and/or advice would be very much appreciated

Rachael

Xx

10 Replies

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  • it's very worrying waiting for news of your health but try not to second guess it. If it were pbc it's not a death sentence and in most cases it is very slow progression. I have pbc and suffer with wrist and ankle pain. Pbc is diagnosed with positive AMA, elivated Alp and Ggt. Let us know how you get on and try not to worry.

  • Hello iowcaro.

    Back in 2010 I didn't have the GGT taken until my first day at the hospital when I had LFTs redone and also the FBC along with the antibodies blood test.

    After diagnosis the hospital doctor gave me an envelope at my next visit and asked me to have bloods done at the GP surgery in the period before I saw him again. He specifically said he would write GGT on the bottom of the envelope as it is one that is usually missed after you have been diagnosed with PBC. I have had this missed since at the GP surgery and always mention it when I go for the bloods.

  • I'll watch out for blood test, I think it's best to do a bit of self doctoring sometimes. Or a best be well informed so one can make sure everything is being done properly. I'm living back in the UK now and it's all new to me here. There seems to be a veil of secrecy regarding your own health in this country. Thanks for the tip.

  • Hello Rachael.

    I was informed back in 2010 when I went for my first hospital appoointment later that year - I started to itch early 2010, was fatigued at the time too. Itching tends to be a common sympton that starts on the route to PBC diagnosis though PBC can be discovered by routine blood tests. I'd not probably have known had I not started to itch as I rarely saw a GP - that the antibodies blood test takes longer to come back than standard LFTs (liver function test) or FBC (full blood count) for eg. Mine were 6wks before I heard anything (but being NHS patient and having to wait for the hospital consultant who chose to write to the GP to inform me, I would have known 2wks prior. But PBC isn't anything quite so drastic if it is found out one has it in the earlier stages. A doctor tends to go off the bloods and how they are progressing. Mine just started to continue to slowly rise over the course of 2010 but prior to the AMA (and ANA) blood test at the hospital, in a 3 month period they had actually started to drop of their own accord with no medications.

    If one is on other medicatons they can also affect the LFTs. I was not on any meds prior to 2010 and during 2010 (except for 2 days when the GP thought I'd an allergy and prescribed antihistamines that I took for 2 days and then abandoned) as this is taken into consideration too.

    I had a liver scan and also surrounding organs 3 months prior to getting an hospital appointment. PBC doesn't actually show up on an ultrasound scan or other certain scans. It can show any liver abnormalities like enlargement for instance. Mine showed me to have pretty much normal organs and also the hosptial doctor said when i saw him the scan had shown pretty clear bile ducts.

    The usual way to diagnose PBC if a doctor is in any doubt is by liver biopsy but I can't say for certain regarding individuals. My path went via symptons, abnormal bloods and then the positive 'high titre' (as measured in) of the anti-mitochondria antibodies (AMAs). My ANA showed it to be negative.

    I think I am right in stating that there has to be a certain measurement of the AMAs for diagnosis along with the other 2 factors.

    Even if one has AMAs present that have been found by other tests, it is possible for that person to never go on to develop symptons of or progression of PBC. Seems the norm if one has PBC daignosed and their LFTs are quite normal, they are just monitored at intervals for any changes and also any symptons that might present that are connected with PBC.

    In my view if you were to be diagnosed with PBC or it might be suspected now, even if you think you are looking after yourself as adequately as you can now (as I did and am sure others on here thought the same too but we still developed PBC) then it can pay to take even more care of yourself then.

    I did stumble acorss PBC myself online and also in library ref books in the months prior to my diagnosis but I never mentioned to the doctor. He was taking blood test after blood test along the way to rule other things out (Wilson's Disease for one, the copper test - mine was negative) as there are other problems that we can ahve that can also raise the LFTs. He did one to decide whether there was a problem with the bones or the liver as bone problems can also throw up abnormal LFTs.

  • Hello Rachael,

    Sorry to read that your diagnosis is taking so long. However you will have the scan tomorrow and then the results relatively quickly (I hope you will hear before Christmas). Try not to over worry, easier said than done, when I have problems that I fret on the PBC itch seems worse. I was diagnosed some 8 years ago now, then it was done by taking a sample from the liver (no anaesthetic) just a tad painful I have to say! Once diagnosed I was prescribed a tablet Ursofalk which seems to work for a great deal of us sufferers. For many diagnosed with PBC there is a good lifetime expectancy. It is something you may expect to die with rather than from for others a transplant may be the alternative route. Diagnosing the condition early and getting treatment if it is indicated at that time seems to give a better outcome.

    I itch, have dry eyes and use a cream on my skin to keep it supple. Occasionally I get quite stiff and painful joints but it is not a constant but I do get tired these days. For the itch it was suggested that anti histamine would help, sometimes it does not, I used eye drops for my dry eyes and put up with the other side effects. Some days are completely clear and other times no so good.

    hope you get an early answer

    best wishes

  • Hi Rachael,

    First, try not to worry, as others will say to you on here.

    PBC is not always that bad, plus you may not even have it. I hope the scan goes okay. What sort of a scan? Ultrasound, MRCP, or even MRI?

    Are you in the US, is that why you are paying, or just because it was quicker? I'm curious, as when my old (Hull, UK) GP saw I had AMAs (this was about 22 years ago, I'm now 59), he sent me to see a liver consultant and a rheumatologist pretty damn quick. The liver chap did more tests, full examination, and an ultrasound scan himself - and I must say his scan seemed much more comprehensive than ones I've had since (but then maybe the equipment is much better?). Plus, when my new-to-me GP in Devon realised I had AMAs about 7-8 years ago (she panicked a bit I think, as I hadn't had liver function tests for a few years, as after 12 years of annual liver function tests at my old practice, I'd been told to stop as I'd never develop anything), she again got me to a consultant pretty quick.

    I won't go through all my history again, as I keep spelling it out on here (you could look back through my various posts where I've explained to others in a similar situation to yourself), but compared to many of the others on the site - who really have got full-blown PBC - I feel a bit of an oddity.

    First time around PBC was never mentioned, I just had lfts every year, which stayed (and are still) completely okay; but, when my current GP sent me to the consultant 7-8 years ago, he diagnosed (I prefer 'labelled') me with 'pre-symptomatic PBC', which is not a formally recognised diagnosis (plays havoc with insurance companies, who just don't recognise it - or rather their databases don't). Since then I've had another ultrasound and still have annual lfts, but still all tests are okay, no symptoms and I feel generally fine. Perhaps I should get more checks done, go back to a consultant, but life keeps interrupting.

    As I've said elsewhere, as well as others like me, with just AMAs, there are far more people who test positive for AMAs in the population, than ever go on to develop PBC. Just because 95% of people who have PBC also test +ve for AMAs ... is not at all the same as assuming that 95% of people with +ve AMAs will get PBC!!

    AMAs are a strong indicator of PBC, but a lot of consultants feel they, alone, are not enough for a diagnosis.

    For a 'formal diagnosis' I have been told [NB by a leading PBC consultant, so this is not 'just' my opinion] that 2 out of 3 diagnostic criteria need to be met;

    that is: presence of AMAs;

    and/or: abnormal lfts;

    and/or: a biopsy showing bile duct damage.

    The first 2 are usually enough, especially with symptoms; a biopsy might be done with only AMAs, or high lfts, or where it could just be something else.

    I know not everyone agrees with my stance - that AMAs alone do not necessarily mean PBC - and I'm worried that more consultants seem to assume it does - but many do not, so as long as I'm okay I'm not worried. 22 years, and I'm still basically okay.

    Again, try not to worry, I hope the scan goes okay, and do let us all know how you get on.

  • Thank you for this. It's very reassuring to me. I think that because I am diabetic that I worry more.

    I pay for everything because it's quicker, I'd be waiting ages on the NHS!

  • Hi Rachael,

    Just to nod in agreement with what Gritty Reads has said (as always!).

    I'm another with positive AMA M2 antibodies but normal LFT's and symptom free (yes, I do know how very fortunate I am at this point in time). Therefore according to my GP and consultant (Devon) I do NOT have PBC. Annual blood test to check LFT levels only.

    I did get very worried initially but partly because my GP said just enough to get me obsessively searching on the internet but not enough to reassure me. Much more relaxed about it now I've stopped researching online. There are hundreds of articles on the internet that are either out of date or do not apply to an individual's situation.

    If worried contact the PBC foundation, can't recommend them highly enough.

  • "Why 'thank you' kind badpiglet." [imagine drawled 'southern Belle' accent!!]

    I'm in Devon too. Where are you, who do you see?

    Email me off the site if you'd rather.

    Cheers, Gritty!

  • Hi Everyone

    I had my liver ultrasound scan and everything is fine! Phew!

    So, I have an appointment with my neurologist on Tuesday because of the seizures (having more tests in the new year) so I will mention the AMA to him and hopefully he will reassure me.

    I haven't had a seizure for 2 weeks now so hopefully things are getting better and it was just a bit of stress.

    I have my liver function tests done every year at Diabetic clinic, but I think I might ask for a referral to see a liver specialist just so that I can ask if these AMA can be present in people and never really mean anything.

    Thank you to everyone for replying to my frantic message on here, really got me through a tough few days.

    xx

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