I posted in here a couple of days ago because I had a positive AMA result. I have had an ultra sound of my liver which came back clear.
So, I have just rang and found out that the AMA was 1 in 100, does anyone know what this means, my consultant did say that it is low.
I had this AMA done because of very bad ankle pain which is also rarely in my wrists. I have had the ankle pain for about 6 years. Consultant says that there is nothing wrong on my liver bloods at the moment, but I am not sure which LFTs he has done. I have LFTs done every year at Diabetic clinic (type 1 for 8 years) and have never had any come backs.
So tomorrow I have an appointment with my Neurologist because I have had seizures earlier this year and am having further tests for these. But I plan to ask him about my LFT results tomorrow, so I am going to ask about:
ALP, which I think is the Alkeline
GGT
Bilirbin - is this about itching? I have had itchy skin with a rash for about 12 years but goes away with antihisthamines.
Lactic acid-am asking about this because I think exercise is a trigger for the seizures.
I also found out that I tested negative for smooth body and ANA.
Any help would be great thank you.
Rachael
6 Replies
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I also wanted to ask, what sort of itching does everyone get? Does it come with a rash? Does it respond to anti histamine?
And fatigue, I'm not sure if I have that. I do get very tired but I am diabetic and sometimes my sugar is high. But, I still manage to clean my house, work for our business (at home). Surely I wouldn't be able to do that if I had fatigue.
So sorry for all the questions, I am such a worrier.
which are helpful organization and useful sources of information.
You will also find PBC and PBCers on Facebook, not sure about Liver north.
You ask about the itch. This can range from driving me mad to easy to tolerate. I do not have a rash other than what I cause externally when the itching is bad. I do take anti histamine (originally recommended by the specialist) but have just changed the tablet to another source because the itch has been bad. The itch seems a bit less again now with the change in antihistamine tablet but I am in a stressful situation at the moment and I believe that always makes the itch worse. I was diagnosed about 8 years ago.
I am fortunate that being retired when the wall of fatigue hits me I am able to close my eyes for a while. The itch and the fatigue seem to hit different people at different levels and different times of the PBC. Not all people with PBC seem to have the same symptoms. However I am still able to keep the house work under control, garden and sometimes walk into my local town, about 20 minutes (used to be less when I was younger).
I recently asked a question on here about itching and found that several of the answers have itching in different places to mine.
Hope you get some answers to help you with your diagnosis.
best wishes
Hello Rachaelfox77.
Has a doctor diagnosed you with PBC? Having a positive AMA result can in fact be PBC but what is normally done is to team it with other symptons or results (ie abnormal LFTs and also the GGT) for it to be acted upon with ursodeoxycholic acid.
Back in early 2010 I took myself off to see a doctor as I was itching. This persisted for a fortnight and didn't appear to be vanishing. The doctor at first assumed allergy and prescribed antihistamine (piriton - I did buy over-the-counter (OTC) as they were the same by script and would have cost more as I pay for prescriptions). The tablets just made me feel sick for 2 days and did nothing as they wouldn't do with having undiagnosied PBC. I was fatigued at the time but never thought much of that due to my workload at the time.
I was found to have abnormal LFTs and had other tests to rule out other things like Wilson's Disease for one (copper overload). There are other health conditions that can throw up abnormal LFTs. Bone problems can give off abnormal LFTs so it was ruled out that it wasn't bone-related but liver. A scan showed pretty normal liver and surrounding rogans and pretty clear bile ducts. It wouldn't show PBC.
I eventually, nearly 9 months down the line had the AMA (and also the ANA) blood test done at the hospital. This was found to be with 'a high titre of AMAs' but the ANA was negative. With symptons and also abnormal LFTs I was started on urso after being diagnosed with PBC.
If you have had a low reading of AMAs and it appears you haven't got much in the way of symptons like itching (it doesn't show as a rash in PBC. You feel it beneath the skin, I liken it to rubbing against nettles or being attacked by wasps), your LFTs are normal then even if you have PBC that is diagnosed, currently the only thing a doctor will probably do is continue to do blood monitoring for any changes. I am not sure what the ANA actually means as mine was negative. AMAs can fluctuate from time to time. Someone with them showing high can at a later date show very little or even none but if you ahve diagnosed PBC from a doctor then you have PBC and it will always be with you (though you can have a return to normal LFTs if you started on urso).
Itching is thought to be from used bile that circulates in the bloodstream. Due to it being toxic and in PBC it can be a bit mroe difficult to be dealt with, the salts leech out via the skin and this is thought to cause itching. I've so far had a normal reading for bilirubin but that can also show in urine.
I'd not worry too much about your results at the moment. I know I wouldn't if I had normal LFTs. Mine have come down over the last 4yrs but are still abnormal but not so abnormal. My GGT is still abnormal also.
I did find out that you can have itching like the one in a liver-related condition in a kidney disorder too. I only found out when my children's grandad developed a kidney problem a few years ago and he had all-over body itching due to this particular condition. He wasn't diabetic by the way. The only thing I know about lactic acid is that theya re present in muscle. Read something about lactic acid in calf muscles of runners.
Look after yourself. You sound like you are doing quite fine to me at the moment. Question your doctor though to alleviate any worries you may have and in the event you are diagnosed with PBC from the AMA result, at present you are with nromal LFTs and it can pay to keep looking after yourself all the more.
Sorry to not reply earlier, you must have posted later in the day, yesterday, and I normally only check first thing in the morning.
You can get a printout of your liver function tests (or any tests, you ever have) from your GP - it is your right, and they cannot refuse - however, they may ask for a small fee for the admin/photocopying. My surgery doesn't charge, so long as it's just the one sheet and pretty soon after they've been done.
[They charged me £10 for pages of results and GP consultation notes, sometime after the events, when I needed it to tell travel insurance about a non-threatening condition, but one which had been very scary at the time, with several appts where I couldn't remember half of what happened, or was said ... but then I am paranoid about Travel Insurance]
However, the consultant should have been sent everything.
Also, if you have not already done so: read all the information on the PBC Foundation website - there is a link to the site at the top of this page. If you still have questions, phone them up and talk to one of their advisors. Also, if you join the PBC F, they will send you their 'file' on PBC, which covers all of these details, then you will have the info at your fingertips, eg about levels of lfts etc.
It's good to ask on here, and you do get loads of support, but PBC - in all its aspects - is so variable, eg the 'itch', and we can only tell you about our personal experiences, which may not relate to what you need to know. In fact a lot of what we say to you may be beside the point - sorry! (also, we don't always remember if we've already spoken to you ... in which case we may repeat ourselves - sorry).
I only test +ve for AMAs and have done so for 23 years, but with no symptoms, clear ultrasounds and normal lfts for all that time. I'm afraid I can't comment on the % of AMAs, I am being a bit 'head buried in sand' about it, but I do think (from what I remember) that the subtype of AMA is more important. If the neurologist doesn't know this then he should do the finding out. I would hazard that you don't have PBC, and imagine there are lots of other simple and non-worrying explanations for the seizures which the neurologist really should know all about.
NB Far more people test +ve for AMAs than the number who go on to develop PBC. Formally AMAs - all on their own, with no symptoms - are not enough for a diagnosis of full PBC, although more tests may be called for.
I assume your GP plans to keep checking your lfts - he should do - mine are done every year, and whenever anything odd goes wrong.
Take care, and good luck with the neurologist, let us know how you get on.
Rachael, First, I am not a doctor, just somebody a few months ahead of you in researching this topic on the web. If anything I say below needs correction, the good folks on this site are welcome to do so.
From my understanding, when they measure AMA, it is done as a "titre", which means that they dilute your blood again and again until no AMA is detected. The more times they need to dilute it, the more AMA is in your blood. So a person with an AMA titre of 1:20 (a ratio of one to twenty) has to have their blood diluted 20 times in order to detect no AMA. An AMA of 1:100 is significantly higher, because that person needed to have their blood diluted 100 times in order to detect no AMA. In practice, because the first number in a ratio is always one, they generally just communicate using the second number. So it sounds like you are a 1:100 ratio, which I understand to be well into the positive range. However, you should confirm with your doctor. Like any other test, they should give you your number, and the normal range. I read that the normal range of AMA is less than 1:40. Now, AMA is a bit more involved than just that. For example, there are multiple laboratory methods that they use to detect AMA. Some are apparently more sensitive than others. So it is apparently possible for 'borderline cases' to get different results from different labs. In fact, there is a very similar condition to PBC called Primary Sclerosing Cholangitis, which in laymans terms is the same as PBC, except that no AMA was detected. It is treated the same way and has the same progression. There are also multiple subtypes of AMA which are specific to different conditions. I believe that the M2 and M9 versions are specific to PBC. I have also read (and heard from a hepatologist) that in diagnosing PBC, the overall AMA titre is more clinically significant than any one subtype, such as M2. For example, I am a bit of an anomaly. I tested positive for AMA M2, with a titre of 1:36, where anything over 1:25 is positive. However, my overall AMA titre came back negative, and I have not yet been diagnosed with PBC, due to lack of other symptoms, and (apparently) a lack of justification for a biopsy just yet.
So what does a positive AMA test mean? My understanding is that in the presence of other PBC symptoms (such as pruritus/itching, elevated ALP, elevated IgM or other symptoms), that a positive AMA test is enough for a confirmation of PBC, even without a liver biopsy. Apparently, certain AMA subtypes are 'highly specific' to PBC in the range of 98%. What I don't know (and would love if somebody chimed in about) is how likely an otherwise health person (with no other PBC markers/symptoms) would be to be walking around with a positive AMA (or AMA M2), and what this means. My guess is that there are not many of them(us), and that if they(we) don't have PBC now, we are fairly likely to develop it in the future.
My advice to you is exactly the opposite of the advice my doctor gave me: go ahead and arm yourself with information.... this site, the PBC foundation, and Google are your friends. The more info you have, the more educated conversation you can have with your doctor(s). However, some if it is not the easiest reading, so just take it all in, and know that you are on the right path. Also, pay attention to the dates of the articles you read on the web. The newer, the better.
cheers to you (woops, i forgot i quit drinking)
rainman
Thanks everyone for your replies. My rhymatologist said that the level of AMA is a low level but if you are correct Rainmain then this is not the case. I think I will make an appointment privately in January and ask him about the level.
I saw my neurologist and he said thar there is no relation to the AMA level and the seizures.
I'm still in terrible pain in my ankles and it has recently been painful in my left knee. This is the reason I went to see the rhymatologist in the first place. If it's really bad then I take tramadol but even that doesn't work. He told me that the pain was probably not neuropathy pain because it is usually in the feet which I know I have that. However I have checked online and loads of people with diabetes have neuropathy pain in their ankles and legs.
I have had my rash for 12 years, it first came up all over the left side of my tummy, looked like someone had poured scalding water over me, it eased off over the following months but if I don't take antihistamine it comes back but I need to take them every day..
Basically I want to know why I have such severe pain in my ankles and also why I have the AMA. I've paid nearly £2000 for consultants, MRI, EEG, liver ultrasound and I still don't know what's wrong. I think the are going to scan my ankles next, so we will see
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