AMA

[Olivia1253]

Well just waited seven weeks for AMA test results carried out by Dermatoligist following slightly elevated ANA showing mitochondrial elements. He didn't get back to me as promised so his Secretary forwarded bloods on to my GP and I had to wait two more weeks to see him. Guess what.....he doesn't understand them and needs to speak with hospital. He let me read results and I wrote this down ANA antinuclear + 200. Anti dsDNA, negative and LKS AMA +200. LFT normal. Is it at all possible I don't have PBC chaps? Joined PBC today but can't find what indicates PBC with bloods. Going madder than normal now......very tired all time but no itching. Please....anyone out there who can help put my mind at rest ? Xx

[Hidden]

Hello Olivia1253.

I started itching early 2010 and by December that year I was diagnosed with PBC due to having symptons (at the time itching and fatigue) plus abnormal (higher than normal) readings of the LFTs (liver function test) and it was found I had what the consultant described 'high titre' of AMAs (the anti-mitochondrial antibodies) but the ANA (anti nuclear antibodies) were negative.

I had to wait 6 weeks for the results of the AMAs from the consultant and then when the GP finally got round to reading the letter with diagnosis (that he was requested to give me and prescribe urso for PBC) one of his receptionists rang me and was expecting me to go in to see the GP over a week later. The wheels of the NHS work really slowly I found.

With PBC though it seems that it doesn't seem crucial for most when we are being diagnosed and we are not dealt with at the time as a patient of a great emergency. Had my bloods shown to be exceptionally high then I am sure the consultant would not have written to my GP. I think if your bloods are of an alarming reading then you would have been treated accordingly.

It is possible to have ANAs as well as AMAs but I cannot say what that means. It is usually the AMAs that are due to PBC.

I originally saw my GP with itching and he carried out blood test after blood test over many months to determine what might be the cause and then did one that decided between a bone issue or a liver issue (as you can have abnormal LFTs with bone related disorders). I then was referred to hospital Hepatology Dept where I saw a consultant in this field.

I expect that you might at some point be referred to Hepatology (or Gastroenterology).

I get a print out of my LFTs and also one known as the GGT (this is supposed to give some indication of liver inflammation) each time I have the bloods done. I see my figures against what the normal ranges are but with the AMAs I cannot say as I didn't get a figure reading. If you did get a print out of yours then it is the norm to have the normal ranges printed on.

[Olivia1253 in reply to Hidden]

Thanks Peridot......keep well x

[butterflyEi]

Hello Olivia1253

I think you may need to see a hepatologist, this is someone who studies the liver, biliary tree, the gall bladder and the pancreas.

Alternatively you may be able to get an answer from the PBC Foundation. They have contact with medical specialist and may be able to decipher your blood results. Details of how to contact them can be found at :- pbcfoundation.org.uk/

They are the sponsors of this page and are free to join.

Not really sure why you would have seen a dermatologist if you were looking for PBC.

best wishes

[GrittyReads]

Hi Olivia,

As ButterflyEi says, contact the PBC Foundation: either the link she gives, or just click on their link at the top of this page. This will take you to their site, which gives you phone numbers and email links to talk to their wonderful trained advisors. They are so good, and will be able to help you. Also there is loads of up-to-date info on the site (lots of online sites are hopelessly out-of-date and overly scary), and if you join (it's free) you will be sent lots of stuff plus your personal copy of their PBC Fact File which details things like the liver function tests (blood tests) that are most commonly abnormal in PBC.

I don't know enough about ANA to know about the relevance of your test results to that, but the presence of AMAs, alone - especially if you do not have symptoms of PBC (the most common are fatigue and itching) - does not mean you have PBC. Also these symptoms of PBC are common to some other liver and autoimmune conditions, so even if you have symptoms, it may not be PBC.

Really you need to have AMAs, and to have abnormal readings for those liver enzymes which are specific for PBC, for over 6 months to be diagnosed with PBC. If there is any doubt they should do a biopsy - but talk to the PBC Foundation advisors

Also: My GP did my AMA tests, and does my annual blood tests, and they get the results back pretty quick. Also (in the UK) it is your 'right' to receive a copy of your results: my GP reception just print them out for me (some practices may charge, but mine don't for recent tests).

... And I agree, see a hepatologist, preferably one who knows about PBC. Some people just get to see a Gastroenterologist, but I would stick out for a liver/PBC person, even if it means travelling a bit further for the initial check.

Take care, and try not to worry,

Gritty

[Olivia1253 in reply to GrittyReads]

Thanks so much Gritty. I'm such a worrier. All my liver tests appear fine but my GP thinking of sending me to a Liver specialist so at least I'm not being ignored as some here appear to have been. I've been so tired for a few years now but apart from that I have no other symptoms. Everyone is being so kind on this site. Good health to all. Xx

[chynablue]

Hi Olivia,

The positive AMA blood test is indicative of PBC. But, positive AMA blood tests are not usually enough to diagnose you with PBC. In most cases, you would need some additional symptoms and/or elevated bilirubin or ALP in your blood. Some doctors require a liver biopsy to confirm the PBC diagnosis. Here is a link with more info: labtestsonline.org/understa...

In my case, my doctor was more proactive and went ahead and diagnosed me with PBC and put me on Ursodiol. I had fatty liver disease (causing elevated AST and ALT in my blood work), severe fatigue, and high AMA M2. I have been on Ursodiol and Vitamin D for about 3 months and it has made a huge improvement in my fatigue and overall health. I go back for testing next week so we shall see if my AST and ALT have improved. Fingers crossed!

You can use the search box in the link above to read more about the ANA blood tests as well. The elevated ANAs indicate that you might have some sort of autoimmune disorder going on as well, separate from possible PBC. But further testing and investigation needs to be done before any of this can be confirmed, so try not to worry too much as of yet! ANAs are tricky and sometimes they can show up elevated on a blood test and then it just goes back to normal and nothing ever comes of it. It might be good to see a rheumatologist or endocrinologist to follow up on this in more detail.

Keep us posted!

[Olivia1253 in reply to chynablue]

Thanks so much. My GP has now confirmed my AMA to be low levels but is wondering whether I need a scan or to Liver Specialist. Don't have symptoms other than fatigue. Keep well xx

[Olivia1253 in reply to chynablue]

Thanks so much everyone. My GP is being proactive and is thinking of sending me to a liver specialist. Not sure how I'll cope with waiting for results as Ive constant butterflies! Dad so poorly too which is more of a worry but hey, this is life! Will keep in touch x

[jiacheetah]

I shared this with another person.

"Normal test results are negative for AMA. A positive AMA test means that antibodies are being made that are attacking the mitochondria of cells. In the majority of cases, these are cells of the small bile ducts. A positive AMA test typically means you have PBC.

Some people have positive AMA tests without having PBC. Certain other types of liver or autoimmune diseases may also cause elevated AMA levels.

If you have a positive test, you will probably need additional testing to confirm your diagnosis. In particular, your doctor may order a liver biopsy to remove tissue from the liver. Your doctor may also order a CT or MRI of your liver."

healthline.com/health/antim...

[kingerm]

Okay, when I get my blood tests done they only test for Billirubin, ALT (SGPT), Alk Phos and GGT. Billirubin normal scale is between 0.00 and 21.00. ALT (SGPB) should be between 0-35. Alk Phos should be 30-130 and GGT should be between 0 and 38. My last bloods in January were 7, 166, 545 and 371 respectively and I have PBC. So maybe you can figure it out from there. I don't know what the other stuff you got tested for was for. Also, can you tell me why you see a dermatologist - is it for itching or do you have something else? I have a mark on my arm that looks like a love bite or ringworm but it is neither. To see a dermatologist in Ireland there is a waiting time of over two years. I'm coming up on 18 months so I've a while to wait! Love to know if its connected to PBC or not.

Thanks. Here's hoping you don't have PBC but it's not the end of the world if you do. It's mostly annoying and frustrating, for me anyway, though there are different stages, so you might be at a different stage to me.

[Olivia1253 in reply to kingerm]

Thanks for responding - I saw Dermatoligst last Nov for a few red marks on my face which I'd had about three months and was getting worse. Had to wait a month as considered non urgent so you must push for your appointment. Two years is too long. Dermatalogist said it was Jessners Lymphatic Infiltrate and nothing to worry about. However this can sometimes be related to dermal lupus so did an ANA blood test which came back showing low levels of antibodies including mitochondrial and he then did further bloods (AMA) which has just come back low level positive which can be indicative of PBC. I was worried I may have lupus but would swap for PBC if need be! Don't want anything naturally but something has to be causing such tiredness!! Dermatalogists can diagnose so many ailments and u really need to push for an early appointment. I wouldn't worry too much as yours doesn't sound lupus related to me. Have good health. Xx

[Olivia1253]

Saw Dermatoligst again today. Despite positive 100 AMA and positive 200 ANA he assures me that I do not have PBC as all other liver levels are normal and I have no symptoms apart from tiredness which I had on and off fo years. I have red marks in my face which is Jessners Lymphocitic Infiltrate which can cause tiredness. Had another AMA for M2 which Dermatoligst didn't really want me to have. He said even if it came back positive I still had nothing to worry about. He said he would look after me and is seeing me in six months. Promised he would be in touch if AMA M2 came back with any problems. I have to trust him now. In the meantime I've got my GP interested/worried and he was going to ask Dermatoligst if he thought I should see Liver Specialist. Dermatoligst said he definitely would not suggest I see Specialist. Feeling a little happier as I may have had AMA and ANA forever. Hope you are all doing well......x