Mid diagnosis perhaps?: Ok so I took some... - PBC Foundation

PBC Foundation

8,376 members7,094 posts

Mid diagnosis perhaps?

KN1981
KN1981

Ok so I took some blood tesss last week and the results came back normal. I am going to take all the tests again at a private clinic so I can compare what nhs is saying in 2015. They had told me they think I have pbc and that I should do a biopsy and take medicine which I refused at the time. I do want to add something important I was dieting at the time and exercising a lot to the point my period stopped. I was taking aloe Vera in water he one max strength and have been researching frantically and apparently this causes liver enzymes to rise and can also give AMA false results so now it’s been two years will see what happens when I do them all. Just in case other people have been told the same as I have and taken supplements and things that could have caused this problem and really don’t have pbc. Please if you were diagnosed whilst in a period of extreme exercise, weight loss or taking shakes, herbal remedies etc maybe have a break from everything for 6-10 months and then go for blood tests as there is high chance especially if you don’t have symptoms I am now paranoid so going to do the AMA M2 rest again just in case

17 Replies

wow that is very interesting. Good on you for sticking to not taking the meds if you were unsure about the diagnosis. Hope everything will be clarified with your next lots of test.

My doctor and the first specialist did ask if I was taking any health supplements or diet supplements.

A few months ago my specialist was threatening to put me on statins, but I said I would make some diet mods first (had been sympathy eating and gained a bit of weight). hoping by Christmas to have nailed it.

KN1981
KN1981 in reply to kiwivivr

2015 I decided to stop smoking and went on a diet, when I say diet I mean vegetables, fish but cut out wheat so I lost a lot of weight quite quickly which could have also contributed to high liver enzymes. I then started to work out running 6 days a week about 7-10km for many months probably 8 months and lost more weight and felt great no tiredness nothing. My period stopped which was an indication of I was overdoing it and not eating enough for the exercise I was doing. I broke my little toe as well and one day woke up and found what seemed like a big lump near my groin. I went to GP who did blood tests and sent me for scan. It was a lymph gland which was good news but the bloods came back with high liver enzymes and positive AMA2I went to the specialist at St Mary’s who told me I should have fibrosis scan. I had two and they were fine. Then he said I should do a biopsy I said no that’s a little too much for me right now please send me for MRE but he continued to convince me for biopsy I refused. He then offered me medication but I was not comfortable because al he other things it could be I was not tested for and they were not sure if it was PBC so that didn’t make me feel very comfortable in taking something that they thought I had nothing confirmed. I didn’t go back until now. I broke my shoulder and need physio and the GP told me off for not taking my liver issues seriously and convinced me to do the bloods. My liver enzymes are all normal and they did cholesterol which was fine and I had two low results which is for white blood cells but not too low so I was told no action required. I now want to get my AMA2 tested again to see whether that still says positive, they don’t want to do it for me so I am going to private clinic next week. If that’s negative then my theory is correct but if it’s positive then I will get tested for all autoimmune conditions to find out what I have but I thought I better put this out there because it’s easy to misdiagnose as well as not take things slowly. The top consultant I saw was very pushy for biopsy which really scared me

I have done a lot of research on what causes these enzymes to go up and it can be so many things like breaking bones with trauma, being underweight or anorexic, quick weight loss, excessive exercise, makes nutrition etc it takes about 1 year for this to return to normal once you make the changes. I’m no doctor but if you don’t have symptoms then worth not jumping into things

Will keep you all updated

kiwivivr
kiwivivr in reply to KN1981

so interesting. congratulations on your weight loss and giving up smoking.

Michi1
Michi1 in reply to KN1981

I would think if your liver enzymes are normal and you never took Urso you probably don’t have PBC. Did you look to see if they are higher, but still in the normal range? If they are rising slowly over time, Urso could mean the difference between a normal life and liver failure in the future, if it works for you.

KN1981
KN1981 in reply to Michi1

I printed off my history and am going to compare everything and let you all know as well as the other tests. Hopefully have this all updated by next week as I am going to get AMA and M2 with private clinic on Monday next week. I can see something 3E PBO which also was positive in 2015 what does that test for exactly or what does that mean?

Michi1
Michi1 in reply to KN1981

Best of luck with it. Are you in the states? I’m in Miami. My first doctor was pushy about a biopsy, too, but I felt the worst thing you could do with a liver suffering from an autoimmune attack would be to take a core sample from it. My new doctor agreed that fibroscan was enough. By the diagnostic guidelines, without elevated liver enzymes in a certain proportion, plus usually but not always, AMAs, you don’t have PBC.

KN1981
KN1981 in reply to Michi1

I’m in London UK

My bilirubin is higher now than 2015 it’s was 19 and now 25 but I have broken shoulder and apparently that could cause it to be high. Mean platelet volume is below average and lymphocyte count is also below average but just. Everything else is normal so will take the AMA again to see if it’s positive or is now negative

It’s very stressful trying to research and make sense of it all ... I don’t really trust Dr now

Michi1
Michi1 in reply to KN1981

You need to see a Hepatologist who treats autoimmune diseases. PBC is very rare. Most doctors don’t know much about it.

KN1981
KN1981 in reply to Michi1

Yes I am going to keep on top of this and find a good one in UK

Hidden
Hidden in reply to KN1981

3E -BPO is part of the antibody test.

Hi, I'm just trying to understand - your AMA was negative in the tests you've just had, but a few years ago it was positive?

KN1981
KN1981 in reply to Skypony

I was tested for AMA and it was positive then they tested for M2 positive in 2015

This time I was tested for the liver enzymes all normal but I am now paying to get AMA tested to see whether that has changed from positive to negative

What I am trying to explain is they only do the AMA if the liver enzymes are high due to them not being high this time it means I wouldn’t be tested for it obviously I want to see if that result is different if it is positive then I will test for everything until I have confirmed diagnoses and will then take medication etc but if it’s negative I will be taking this further with the consultant and will share all my information with anyone who wants it because I want to help. Ps this site is lovely and so helpful. Whether I have this condition or not I will be raising money for this charity by running or something you guys are amazing and it’s not even been 2 weeks that I have been on here

hope it works out for you.

Just having AMAs does not mean that you have PBC.

Some people (about 8% of the population) just 'have' high AMAs, but never develop PBC (I'm one of them), but … you should have your lfts (liver function tests) checked every year, in case you develop PBC.

UK blood donor statistics suggest that about 10% of (would-be) donors have AMAs, but only about, 1.2 - 2.0%, of those go on to develop PBC. It's been known I have AMAs since 1992 (tho' probably all my life) when a precautionary tests for other autoimmune issues noted the AMAs; I was tested for everything liver/autoimmune related but all was fine. I just have annual lfts.

If you were told that PBC was likely, just based on AMAs, then that is wrong. It has to be abnormal lfts and AMAs, although a liver biopsy (increasingly a fibroscan will be done instead, or first) can confirm PBC.

Hope this helps, talk to the advisors at the 'PBC Foundation' who host this site - Google for contact details via their website: they are lovely, and very well informed.

Take care, Gritty

KN1981
KN1981 in reply to GrittyReads

In 2015 liver enzymes were high, 3 times higher so they tested for AMA positive then M2 3E positive. I did a scan and fibrosis scan too they advised biopsy and meds said it is probably PBC .. most likely

This year I did the liver enzyme test and it’s all good apart from slightly high 25 bil

KN1981
KN1981 in reply to KN1981

Bilirubin which should be max 20 apparently. I had two low levels of something which is white blood cell related can’t remember the name just now one was 5.7 but should be between 7 and 11 and the other was 1 and should be 1.1 so they said no need to follow up. I am now going to re do the AMA M2 and if they come back positive hen I will continue checking bloods and keep eye on things even maybe meds but if negative then I know it was the changes and other things I mentioned which means probably many women on the same boat as me

I gained weight too but I think that’s what has made the enzymes go back to normal I was under weight I think took it to the extreme but I hope you continue the good work and not have to take statins. My dad takes them and after many years getting muscle problems poor thing but he isn’t careful with what he eats and his cholesterol is the heredity one so even if he is careful it will not really go down that much

You may also like...