I have raised AMAs. First test was 25.5 . Second was 23.5. Third was 32.5. I'm in the US. What are some of your guys test numbers?

[Annalida]

My Dr won't do a biopsy. I'm very frustrated. I just turned 40 and have been suffering for the last year -- I have side pains, low fever, memory problems, fatigue, arthritis symptoms.

[Hidden]

Hello Annalida.

Back in early 2010 I started itching and after a couple weeks seemed it wasn't going to vanish so I took myself off to the doctor and started with blood test after blood test. I had a scan that showed my liver to look normal as well as surrounding organs. The blood tests prior to having the scan showed I had a problem with liver as opposed to the bones as you can have abnormal LFTs with that.

Later in the year I went to the hospital to see a consultant and he did the AMA (and ANA) test that day. By Dec I had been informed I had PBC and started on urso. My ANA was negative, the AMA according to the consultant in his letter to my GP stated 'a high titre of anti-nuclear antibodies (AMAs). There were no figures on the letter of which I got a copy, just he was making diagnosis of PBC.

I think you'd have to ask what is considered a result to diagnose PBC but remember it could be due to something else. The AMAs can actually at other times even after diagnosed PBC become negative on a recheck. I've not had mine rechecked and I can't see point in my case as once you have PBC you can't actually get rid of it altho' it can become dormant temporarily/permanently, there's just no way of knowing.

I am in England and I was 46 when I started itching. I was fatigued at the time but I was in a full-time demanding job and I'd not had a holiday in 7 months due to my colleague being off sick. Fatigue has long since left me but I still have the itch at night.

I know here in England it doesn't seem the norm to have a biopsy unless a doctor has queries with regards to symptons and blood work. I know it seems the norm in the US if you are diagnosed with PBC. I personally am not interested in having a biopsy but I suppose it is fair to say I can say that as I got a diagnosis.

Have you asked your doctor what the AMA results mean at all and why if you would like to request a biopsy he/she won't do one? Due to myself and nearly all of England being NHS patients, we often don't receive all the information about ourselves without having to really push or beg for it. There is more than likely a figure from the lab with regards to my AMA back in 2010 but I've never seen it and I'm not interested in asking for this particular one now. I have had to push really hard since 2010 to receive blood print-outs each time so I know myself at a glance. I was finding it difficult being informed this was doing ok, that wasn't as good, etc., means nothing without seeing a figure.

[Annalida in reply to Hidden]

Thank you.

[GrittyReads]

Hi Annalida,

So sorry that you are going through this.

You don't say if your Dr has actually diagnosed you with anything. Has he mentioned PBC? I was told (unofficially) by a leading UK PBC specialist that [here?] a diagnosis of PBC requires 2 out of 3 tests to be postive for PBC before it can be diagnosed. That is 2 of: either a +ve tests for AMAs, and/or abnormal liver functions tests [that is, blood tests that test the levels of the 4, or so,major chemicals that the liver should be keeping at safe levels], and/or a liver biopsy that indicates PBC. One of these, alone, is not supposed to be enough for a diagnosis of PBC, although higher levels of AMAs are a stronger indicator. You don't say if your Dr has done other blood tests, eg the liver function tests. I would push for these if they have not been done, rather than a biopsy, as if your blood tests are abnormal that needs dealing with. Ultrasound scans can often show liver damage too. I test +ve for AMAs, but blood tests and ultrasound are clear (and have been for years), so as far as I'm concerned I'm not PBC, and have no symptoms, so I'm happy to consider myself PBC-free, for now.

You need to check what your Dr has, and has not tested for, also whether your symptoms can be caused by anything else.

Try to stay positive, minimise stress, and look after yourself.

Take care.

[Hidden in reply to GrittyReads]

I know from my print-out of the LFTs and also the full blood count (FBC) and GGT and various other blood tests done during 2010 over 5 months there was a decline in LFTs, GGT and various others in that time. I was still itching badly.

I had coeliac blood test and also the last one prior to the GP referring me to the hospital was for copper to check for Wilson's Disease as that can throw the LFTs. Apart from the abnormal LFTs that were slowly continuing to climb as well as the GGT, all other blood checks were relatively normal.

At no point did the GP mention could be PBC during the time he was seeing me pretty frequently up until Aug 2010. I stumbled across PBC myself earlier in 2010 but never mentioned to the GP as I hoped I had something temporary that would just go away. Thought I was out of sorts due to working long hours every day over 6 days with not much rest for 7 months and that I would get back to normal.

When I got the hospital appt through that seemed a lengthy wait I obviously felt alarmed as I didn't know what was going on but knew the liver. In the 3 months prior to diagnose I started to look after myself even more and on the printout from the LFTs on my first consultation at the hospital I noticed on looking at them that the LFTs and GGT had actually started to go down of their own accord in that time as I hadn't got diagnosed with PBC nor started urso.

I think if one tends to be asymptomatic but has the markers for PBC and the AMAs then if the LFTs are panning out as normal doesn't seem to be the case you start on urso. That tends to happen when the LFTs are abnormal it seems, here in the UK anyway.

When I went to the hospital I was what was known as symptomatic as I had itching and in the early days just before and after diagnose fatigue along with abnormal LFTs and GGT the AMA test did verify I had PBC.

My LFTs are much better than they were pre-urso Dec 2010. I still itch. If I didn't itch I'd not think I had PBC at all.

Actually I am interested too Annalida, has your doctor mentioned PBC at all or have you yourself stumbled across it? It has to be noted there are other liver conditions that one can have also.

[Annalida in reply to GrittyReads]

Thank you

[Annalida in reply to GrittyReads]

Thank you

[WendyMarie]

My AMA number was <1:20 last September,(which is normal) then .44 in October. My ALP has fluctuated between 135-200 for last 8 years, without Urso. This was BEFORE my DX in Dec.2012. So ALP & AMA fluctuate like blood pressure does. Consistent elevation warrants a "fractionated" blood test next to determine if its a liver or gallbladder issue, v.s. a bone issue. So, they break it down to rule out causes other than PBC.

[Annalida in reply to WendyMarie]

Thankyou

[Wendom]

Hi there i have low titre AMA I've always had normal liver function tests my consultant said positive AMA is now known to be preclinical Pbc in people with normal liver functions he said mine will eventually change I'm also classed as symptomatic dry eyes and mouth upper right quadrant pain extreme fatigue also there's

Another test called IGM i am positive for this and I'm told this is often seen in Pbc I've also read this in the Pbc foundations quaterley magazine that said that AMA alone even in asymtomatic people is a predictor for future Pbc also my consultant said no point doing biopsy as there is no cure so there's no point putting someone through it also ultrasound only riules out gallstones and blockages as unless liver was very damaged then nothing would show I asked my consultant can an ultrasound show earlier Pbc he said no only biopsy ultrasound only rules out other cause as mentioned above but from what he said that only a very damaged liver would show changes on an ultrasound a fibro scan is better but not all hospitals have these my consultant said a lot of hospitals still use the old method of diagnosis I'm on urso even though have also got normal Lfts I suppose I'm lucky because not all docs are up to date before urso was started my titres jumped about from 100 then 80 then 75 then 50 that last few have been 25 they said they don't know why they keep changing but the consultants said appositive is a positive no matter what the numbers are sorry this is so long take care and Persue this as my gp said no Pbc but I insisted on being referred to specialist and was told yes early Pbc .i didn't doubt for a minute I had Pbc take care x

[Annalida in reply to Wendom]

Thank you

[moepag]

Hello - I too am in the US and recently diagnosed about a month ago. My AMA is 139.2, Alkaline Phospatase is 135, ALT is 62 and AST is 49. I have had an MRI and my gastro wanted me to have a liver biopsy. I have refused that until I see a specialist in Boston on April 30th. I have not been prescribed Urso yet as waiting for new Dr recommendation or biopsy confirmation. I will post what my Boston doctor has to say about everything. Seems to be early stage - I have some discomfort in right ribcage area and pain in my right hip that is much worse at night. No itch yet, thank God! I have started a fairly vigorous exercise program and healthy eating as much as possible. Fit and 50 is my new motto!

[ranrace]

Every testing center has different numbers. Labcorp where mine test was done is

0-20 negative

20-25 weakly positive

25 or higher positive

My score was a 49

[JennerLayne]

My AMA score through Lapcorp was 84. My LFTs were elevated, but since have dropped into the normal range via a huge change in diet (less fats, lower sugar, Gluten Free, no alcohol, etc.) My Bilirubin and ALP are still within normal range, however my IGM is really high. I've not had another AMA test but my liver biopsy showed mild AIH/PBC.

[Crysyk]

I am in the states as well. Don't have the biopsy. If I could do it a over again I wouldn't have it. Not yet any way. It is very costly and it doesn't offer enough information to be worth while.

I was recently diagnosed with PBC. I had a bleeding ulcer, major stomach cramping like I was in labor, and several other issues that required that I be tested for several different cancers, gall problems, pregnancies and so on it was ridiculous. Later to find out that it is PBC.

After being diagnosed I begun looking at my history and it appears that since 2008 my liver has not been functioning properly.

My levels as of Mar. were:

AMA: 86.7

AST: 135

ALT: 198

ALK Phosphatase: 156

After the biopsy they determined that I have no liver damage now the doctor want me to stop taking URSO. I am not sure that is the right thing to do. Doesn't anyone have suggestions or thoughts as to why I shouldn't take meds. The doctor didn't give any explanation.

[JennerLayne]

My AMA is 84, ALK 100 (107=H) and LFTS have fallen from high into normal range. A biopsy DX came in with AIH/PBC and I have NOT started Urso or Steroids, following a change to a GF diet which lowered the LFTs. We'll revisit adding meds if numbers should rise out of the normal range. Currently beign tested at 6 month intervals.

[Hidden]

I would switch doctors. You may have a different disease. Sounds more like Lyme disease. I am an ND. Not an MD. But I think although ppl. With PIC have elevated AMAs. There is possibility other diseases may also carry it or you could be fortunate enough to have something else with PBC. For ex. It was suggested I may have celiac dusease. I am OK and feeling fine. I am a super healthy Vegan Eater though. Get a second opinion!

[2006]

If you have any sign of PBC take the Urso. It really delays problems with the Liver.

Wishing you lots of luck!

[Tracy181]

Hi. My AMA number was 128. We found. It because we were looking for a reason why my lft was abnormal.

[WendyMarie]

My first AMA test was negative. A month later, it was repeated & the result was 44.