Blood Test Results and Symptoms

[lorilee58]

Perplexed; my anti-smooth muscles is negative, my Gamma GT is 47 (H), C Reactive Protein is high at 18.8, my AMA is 83.9, however my ALT and AST are normal. I am experiencing extreme fatigue, nausea, burning and itchy skin. My GI consultant says because my ALT and AST is not high I did not have PBC. I do have a family member with PBC, my Mom's sister. I am frustrated to say the least; is your ALT and AST high with PBC? Thank you

[Ktltel]

Hi lorilee58,

My AMA is 42. My AST and ALT are in normal range. My Alk-phos is 168. I was diagnosed with PBC last Fall. No fatigue or itching.... yet.

I have mild fatty liver and I also have seronegative RA.

Stella

[lorilee58 in reply to Ktltel]

Thank you I have fatty liver also, I believe it is time to see a specialist, specifically a liver doctor

[lorilee58 in reply to Ktltel]

Thank you and Thank you to everyone. I am seeing a specialist, more blood test, liver scan and we will see. I will up date as I find out the results.

[Hidden]

Alp measures Pbc and alt and ast measures smooth muscle autoimmune hep.

[lorilee58 in reply to Hidden]

My ALP is 110, 11 points above normal range

[Hidden in reply to lorilee58]

Every lab is different with measuring our enzymes.

One of my labs is 130 at a high where a different one is 98 as their high. I don't know why it is like that.

[Hidden]

My alp, alt and ast was high. Alp can also mean bone issue I believe

[Zelda5 in reply to Hidden]

That is true. It's weird that when my ALP was high I had hyperparathyroid disease which draws calcium from your bones and it was about the same time they found the positive AMA M2. After the surgery, my ALP went to normal and ALT increased. My biopsy was neg. for PBC but showed mild fatty liver so I guess that's what increased the ALT. It also went down after I lost weight. So glad!

[jane1964]

Hello Lorilee, I would suggest you get a second opinion from a hepatologist experienced in pbc.I have pbc and my liver function tests were all normal for 5 years after the AMA was first found, nevertheless I have pbc and now 7 years after the AM A was first found I have actual cirrhosis.If pbc is diagnosed and treatment started early people have better prognosis so it's important to get an experienced hepatologist opinion.I hope all goes well for you.Jane

[lorilee58 in reply to jane1964]

thank you I appreciate you sharing your experience and I will be making an appointment with an hepatologist. It helps to hear others experience. Lori

[kitstoo in reply to jane1964]

Hi jane1964,

This is very worrying news. My understanding was, if liver tests were normal, then positive AMA level alone is not enough to diagnose PBC. How were you diagnosed? Did you start taking Urso straight away, 7 years ago?

Kitstoo

[jane1964 in reply to kitstoo]

Hello Kitsoo

I believe you are correct about needing abnormal blood tests for diagnosis.I don't know why the doctor diagnosed me except to say I also had other autoimmune condition antiphospholid syndrome and other antibodies as well as AMAand an extremely strong family history of autoimmune diseases as we as very very bad fatigue and itching nevertheless the doctors didn't start urso until the blood tests became abnormal.From what I've read only a small percentage of people with AM A develop pbc.But I would say it's worth having liver function tests done regularly if you have AMA.Interestingly even now with cirrhosis my blood tests are only mildly abnormal, so think I may be unusual it seems a complex variable disease.I hope you remain well.Jane.

[kitstoo in reply to jane1964]

Thank you, that is helpful. I do have elevated get, which has fluctuated over the last year but is now over twice normal

My gastroenterologist will not diagnose me until ALP is above normal. I have an appointment with a more experienced doctor, but it is still another 6 months away,

[jane1964 in reply to kitstoo]

Good luck with the appointment hopefully the more experienced doctor will be able to give you answers.Jane

[dianekjs]

For an official diagnosis of PBC, two out of three of the following need to be positive: abnormal liver enzymes, positive AMA/M2 antibodies, positive liver biopsy. If your ALP is elevated and your AMA is positive, many specialists would diagnose you with PBC. I agree with others that a consult with a liver specialist is warranted. Early treatment with urso is recommended to slow progression/optimize outcome. Best of luck to you, I hope you'll keep us posted.

[GrittyReads]

I agree that you need to get a second opinion, preferably from a Heptologist skilled in PBC.

I also agree with dianekjs about the 3 'formal' diagnostic criteria necessary, for a 'formal / medical' diagnosis of PBC. The symptoms you describe , especially fatigue and itching are significant for PBC, but symptoms are not enough: the formal diagnostic criteria are far more important.

To repeat: 2 out of 3 of the following:

1: the presence of AMAs (a high or low level is not supposed to be significant, it's just if they are there), usually the sub-type AMA-M2 (other sub-types of AMA, code for other conditions).

2: abnormal liver function tests typical of PBC. My consultant sets greatest store by high ALP and GGT. People often have high AST an/or ALT, but generally ALP and GGT are more significant.

3: a biopsy of the liver showing microscopic damage to the biliary tubules, typical of PBC.

NB 1 and 2 are usually enough for a diagnosis of PBC, but 3 is usually done if there is any doubt, eg: some people have PBC without AMAs present. You should also be tested for all other liver condtions, and ... all other autoimmune condtions, especially as some are linked to the other sub-types of AMA.

Hope this helps, stick to your convictions, and get a second opinion. Contact the PBC Foundation who operate this site - link to their website at the top of this page: they will give you loads of help and advice.

Take care.

[Zelda5]

I would get a biopsy, because there have been some people with normal enzymes and or those with other elevated liver enzymes besides ALP and then yearly monitoring. From what I've learned it's not always textbook, my parathyroid disease for sure wasn't. Good luck!