can some on help?

[mtk0925]

Hi I am looking for some advice. I have been battling high liver enzymes for about 4 years. I was taking vyvanse for ADD for many many years one routine blood test showed that my ALT, AST ALP and GGT were in the 200-300 range all of them. I was told to stop the drug immediately and they lowered and eventually after 3 months went back to normal, but in that three month period i was sent to a specialist that said I had fatty liver or possiby PBC. I had the smooth antibiodies test and an utrasound. All was negative. I switched drs and he took my blood work in 2015 and then I got pregnant everything was normal. We decided after I had my son to try a new ADD med well within a few months my liver enzymes are elevated. My dr mentioned PBC but thinks I probably dont have it as my liver enzymes were ok and I didnt have complications or elevated enzymes during pregnancy. He thinks I do have fatty liver. I am 5'6 150 lbs and I exercise but my diet sucks and my cholesterol both LDL and HDL are considered bad and high. Im just wondering if this diagnosis can be ruled out and its the meds causing this and possible fatty liver even if the liver ultrasound didnt catch the fatty liver? What questions should I be asking? My liver enzymes are ALT 68, AST 56 and ALP is 116.... Just wondering where to go from here. My dr kept assuring me he doubts I have it but wants to double check. I am 32 years old. thanks for your help

[mtk0925]

Also I want to mention that I have had right sided pain on and off for about 10 years. I do not have any itching or swelling. My energy is mostly good, I do have an occasional bouts of stomach upset and diarrhea... I am writing this because if it is PBC i want to catch it ASAP and its already been 4 years of it lingering if I do have it with out treatment.

[Ktltel]

Have your doctor run a AMA-M2 blood test. This is definitive for PBC. Or at least that's what my hepatologist says. It's a anti mitochondrial enzyme. Anything over 1 is positive for PBC.

Hope this helps

Stella

[mtk0925 in reply to Ktltel]

Hi thank you. My dr believes the test was completed and he wants to double check as I switched drs so we are in between drs trying to get information gathered as to if it was just recently tested if not I will be tested again

[Betonarme in reply to mtk0925]

AMA is the key indicator for 95% of PBC cases. There are some rare people who are AMA negative...but anyway... before speculating about yes or no or probably....try to get the results....Liver enzymes can go high in many various diseases....AMA is specific for PBC...

[GrittyReads]

The presence of AMAs in your blood is a strong indicator for PBC, but you should not be diagnosed with PBC just from the presence of AMAs. (I've had AMAs for 25 years - maybe all my life - and no signs or symptoms of PBC, although I have lft tests every year).

NB There are different sub-types of AMA, that code for different autoimmune conditions. The sub-type most associated with PBC is AMA-M2. Other sub-types of AMA are linked to other autoimmune conditions, eg. Lupus. Your Medics should check for all other related autoimmune conditions as well as PBC).

Formally, officially under medical guidelines in UK/US/Eu, there have to be 2 out of 3 specific diagnostic criteria present for a formal diagnosis of PBC. The diagnostic criteria are:

1 - the presence of AMAs (- M2) ... and/or:

2 - abnormal liver functions tests (lfts) over a period of time, typical of PBC .... and/or:

3 - a liver biopsy that shows liver cell damage in the biliary tubules typical of PBC.

1 & 2 are usually enough to diagnose PBC, but both should be present. Some people (eg Me and plenty of others on this site!) just have AMAs without ever developing PBC (= about 10% of the population according to Blood Donor statistics). A biopsy is usually done if there is doubt about 1 and 2.

Symptoms are not enough to diagnose PBC, it has to be 2 out of 3 of the above diagnostic criteria. However, strong symptoms are an aid to diagnosis, and they are usually: fatigue, joint and muscle ache, itching, digestive upsets. If AMAs are not present (about 5% of people can have PBC yet not test +ve for AMAs) then a biopsy may be done.

Check if an AMA test has been done, and make sure they keep monitoring your liver function tests. They should check you thoroughly for all other liver conditions, as well as for all other autoimmune conditions - both those indicated by other sub-types of AMA, and other autoimmune issues, as people with one often have others.

Insist on being seen by a hepatologist (liver specialist) not just a general Gastro, and preferably a liver consultant who specialises in PBC.

Talk to the people at the 'PBC Foundation', who host this site on 'Health Unlocked - link to their website at the top of this page. Their trained advisors are wonderful and will help you. try to have any results to hand. Also, try to get into the habit of asking for copies of all tests and letters, and if possible, take someone with you to all talks and examinations, and get them clued in about PBC, as we often forget to say or do things. Sadly it's often a case where we have to become our own best experts, but this is a grrat supportive community. Take care and meanwhile, try to relax, de-stress and have fun: spoil yourself. Stress is the worst things for all autoimmune conditions, so treat yourself and do things you love.

Take care

[mtk0925 in reply to GrittyReads]

thank you for your reply that makes me feel better as everything has been done for the last 4 years except the biopsy. I had the antibodies testing negative, my liver enzymes went up after starting the add meds and then back down after I stopped and stayed normal until I went back on them and then they immediately went up. dr thinks its meds but just mentioned PBC as a possibility. I know PBC is not a death sentence and if I have it its manageable. My dr wants me to get my weight/diet in check skim down some of this cholesterol and retest my liver in 3 months with me being off the meds for 3 months. So we will see

[MumofUC17 in reply to mtk0925]

Hi there, I was just wondering how you've got on. My son was taking Vyvanse and ended up with a very similar story to yours. Has your doctor concluded that it was a drug induced liver injury? Keen to talk with you further. Feel free to pm me.

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Hello mtk0925.

An ultrasound can show fatty liver and also if anyone has cirrhosis. (Few years ago saw a programme on tv (I am in the UK) and 2 guys, one late 30s showed live to air that he had a fatty liver that was stated to be more than likely caused due to him being quite overweight. the other early 50s guy was showing cirrhosis but he was said to be an alcoholic.)

There is a liver condition known as NAFLD (that is Non-alcoholic Fatty Liver Disease) and also another known as NASH (forgets what that abbreviation stands for). You can check both of these out on British Liver Trust site as theyhave the leaflets for all liver conditions.