Elevated ALP, AMA, GGT should I wait 6 months to repeat labs or get a second opinion?

[LyndeeKay]

Hello, I had routine labs drawn recently that revealed an elevated ALP at 246. My PCP then ordered a GGT, Hep Panel, and AMA. The Hep panel was negative but my AMA & GGT were both elevated. I was referred to a Gastro doc but had to see his FNP. She did not seem concerned with my elevated enzymes but did order an ANA. She recommended I follow up in 6 months to repeat labs. She did not offer an explanation of why my enzymes would be elevated and I'm terribly concerned with the possibility of PCB. I feel I need a second opinion but since most specialist require referrals, I'm not sure what to do. Is waiting 6 months and repeating the labs a seem fair and reasonable?

[LyndeeKay]

I meant PBC***

[jane1964]

Hello Lyndeekay,

I have pbc I was initially diagnosed with normal liver function tests, but with positive ama which was repeated 6 weeks apart and symptoms of tiredness and fatigue and itching hands and feet.Over a number of years my blood tests worsened and unfortunately I now have cirrhosis .I would want a second opinion if I were you from a hepatologist, as pbc is a relatively unusual condition and gastro doctors often don't have experience,although as its a slow moving disease I would think you would prefer a more certain answer than months of uncertainty.The treatment is best started early and has greatly improved patients outcomes.I hope you don't have pbc but a hepatologist is the best person to look into this.Also have a look at the pbc foundation they have lots of good advice and are free to join they also answer questions by email or phone.And there's a pbc forum on health unlocked.

Best wishes

Jane

[LyndeeKay in reply to jane1964]

Hi Jane, I've had the fatigue, itching, and joint pain for about two years and no explanation after many lab tests. Then this year my routine labs were suddenly abnormal which lead to further investigation. it seems now things are at a halt and they aren't sure what to do but wait and repeat. I've read a lot of material on PBC, all indicates that the sooner treatment is started, the better the results. So, I certainly plan to ask for follow up with a hepatologist. Thanks for your reply.

[Hidden]

Do you have any symptoms Lyndee?

6 months does seem rather a long time if they don't have an exact diagnosis, as Liver disease can escalate very quickly (or very slowly).

How do you get on with your PCP (primary care practitioner/doctor), personally I can just make an appointment with my surgery nurse and ask them to do the blood tests (LFTs, U+Es, FBs and additionally AST) whenever I feel that I need to, every couple of weeks at the moment as my kidneys are playing up in reaction to my Prograf. Can you ask your doctor to arrange blood tests more frequently, as you're worried about this?

You may find yourself becoming very knowledgeable about your liver, medications and blood tests. The doctors (pcp) certainly aren't experts but will recognise blood test results that are out of range and hopefully act accordingly.

[LyndeeKay in reply to Hidden]

Hi Red, thanks for replying. Yes, I have symptoms of fatigue, itching, and joint pain. The itching and joint pain are oddly worse at night. I can ask my PCP to repeat the labs sooner, I'm not sure they will since they referred me to a "specialist". I plan to ask as soon as I get the results of my ANA. My PCP seemed to be more concerned than the specialist did. She mentioned that she believed it to be something autoimmune, which is more than the specialist seemed concerned with.

[Hidden]

Hi,

Welcome to the forum.

The British Liver Trust website can provide you with useful information that may help your understanding.

Here is the link to our homepage, you can download publications.

britishlivertrust.org.uk/

With regards to blood tests, we kindly ask you not to post individual results. Liver function test results have widely variable reference ranges and it is vital that individuals receive the right medical information from the right medical channels. It is always your own medical professionals who have the full picture of your general health and the context of any test results.

If you would like to talk then our helpline is open 10-3pm Monday to Friday on 0800 652 7330

Warm wishes

Rebecca

[LyndeeKay in reply to Hidden]

Thanks Rebecca. I apologize. I did not read that lab results should not be posted, but do understand the concern. I will refrain from posting any values in my future posts.

[Hidden in reply to LyndeeKay]

No problem, thankyou. We hope you will find this forum really helpful,

Best wishes

Rebecca

[Michiganpbc]

I would try to see a liver doctor as soon as you can with PBC the sooner treatment starts the better good luck let us know how you are doing.

[LyndeeKay in reply to Michiganpbc]

Thank you. That seems to be the recommendation of all those who have replied to my post. I plan to ask for a referral to a hepatologist.

[LyndeeKay]

My GI doc called yesterday to inform me that my ANA was positive as well. He agrees that it is most likely PBC and scheduled me for a follow up visit in January. For any of you that are diagnosed with PBC, what questions should I ask? Are there other tests that I should request? I've had terrible joint pain this last month in my fingers, knees, ankles, and elbows. Does any of you have joint pain? Just wondering if it's related to the PBC, or if there is a possibility that I'm suffering more than one autoimmune disorder. Thanks to all

[GrittyReads]

Hi, If you are in the UK, you might want to have a look at the 'PBC Foundation' website - they also have a site here on 'Health Unlocked'. It has up-to-date info on PBC, together with a recent 8-page document about guidelines for consultants about the diagnosis of PBC. Many Gastros and even some general Liver Consultants never encounter PBC.

If you do post on their site, it is also likely that if you say where you are in the UK, then someone will be able to tell you where your nearest top 'PBC Consultant' is. This is well worth doing - and can be a perfectly normal NHS referral: my GP eventually agreed to me seeing one of the leading PBC specialists, after my local liver chap had suggested I have PBC, when I don't, I just have AMAs.

Hope this helps.

NB I've only just noticed your most recent reply - just above. I would talk to the advisors at the 'PBC Foundation' as they can give you all the guidance you need. As I've already said, their website is amazing, and if you join - it's free - you get access to even more.

Take care