What exact labs should one request the doc to do to see if they have PBC?

[Suz_anne]

I have been through a ton of scans and tests and nothing definitive. I have crushing fatigue, pretty bad nausea and itching of the limbs especially, a creeping alk phos (still normal but going higher from 45 last year to 84 now), dialated intrahepatic bile ducts and a dialated common bile duct that does not narrow normally (according to CT), and abdominal and back pain, along with dark urine with bilirubin in it. Also I have developed discolored areas of skin on my chest and face. This has happened over the past 6 months. No gallstones have been visualized in MRCP or CT or EUS, and I still have my gallbladder with no attacks or pain there, ever. Thanks for any advice. I just want to sleep and I am so tired but I can’t sleep with the pain and itching. I have a family and I feel like I am failing at life right now because I can’t keep up.

[butterflyEi]

Hi Suz_anne

I see no one has been able to drop in to your post but hopefully someone with more technical knowledge can help in the meantime I have copied an explanation from the British Liver Trust. I am wondering if you are in the US so things maybe a little different.

" Doctors can tell whether you have PBC on the basis of symptoms and a range of tests, including blood tests.

Antibody test: Most people with PBC have something in their blood called antimitochondrial antibody (AMA). An antibody is a chemical made by the body to attack an ‘invader’. Though doctors are not really sure why, the presence of AMA in your blood is an important sign that you have PBC.

Liver function tests (LFTs): This type of test is performed to gain an idea how the different parts of your liver are functioning. The Liver Function Tests are made up of a number of separate examinations, each looking at different properties of your blood.

In PBC, doctors will be looking for increased levels of both alkaline phosphatase (ALP), an enzyme released into the blood by damaged bile ducts, and the immunoglobulin IgM. The liver enzymes alanine transaminase (ALT) and aspartate transaminase (AST) are also monitored, although these are a measure of any leakiness or damage relating primarily to liver cells rather than the bile duct cells.

Ultrasound scan: This is used to check the condition of the bile ducts and to rule out the possibility that your symptoms could be a sign of a different liver problem.

Liver biopsy: If tests show you have PBC you may need a liver biopsy to see how serious the condition is."

I am copying their link here as it gives some advice on diet which may be of some help to you. Women running their families and busy lives sometimes do not look after themselves as much as they should.

britishlivertrust.org.uk/li...

There is also a good deal of useful information on the PBC Foundation website, free to join through the icon above. In the member's section there is guidance on how to manage.

for the itch - and I am an itcher now medicated - try using a menthol cream (I use 2%) straight from the fridge, it is only temporary but it keeps the skin confused

best wishes - come back and let us know how you get on.

[Suz_anne in reply to butterflyEi]

Thank you for replying! I have not had the AMA blood test ran. I am going to ask for that on Thursday at my next appointment and the IgM test. I am also going to ask for a PTT w INR as I bruise so easily, it’s ridiculous, if I scratch too hard even I will get a small bruise where I scratched.

I am in the US, Pennsylvania specifically.

[gwillistexas in reply to Suz_anne]

I bruise easily but usually if pressure like my purse on my arm. I have thin skin & have noticed it for years before PBC. I’m 63 so I’m not surprised. My mom’s skin did that & she didn’t have PBC. I’ve been told by another PBC support group, these things may help with itching:

Gold bond diabetic lotion

Coconut oil in shower & afterwards

Aveeno lotions or any that are oatmeal based

Tepid water to shower or bathe

There are others but these might help.

Peppermint oil in Avenida lotions

[gwillistexas in reply to Suz_anne]

Oops! Last one was supposed to be Aveeno

[GrittyReads]

Hi Suz-anne

You have a great answer there from butterflyEi,

I would only add that 2 out of 3 tests need to point to PBC, for a formal diagnosis.

The blood tests - liver function tests (lfts) - that she mentions are important, and: as well as ALP and AST, ALT and the IgM; my PBC consultant also sets great store by the levels of GGT (my GPs were not previously checking that). However, these bloods/lfts are only 1 of the tests.

Another that should be done is a test for AMAs (antimitochondrial antibodies), particularly the sub-type AMA-M2 which is typical for PBC.

It is usually these two tests (lfts and AMAs) that identify PBC. If AMAs have not been checked for - then that should be done. But, if they are not there, and your liver function tests are at all worrying - plus the symptoms that you have - then you should be offered a liver biopsy. An ultrasound is not enough to diagnose PBC.

However, your Drs should be checking for all other liver conditions, and for all other autoimmune conditions.

I hope this helps, and that you get some answers soon, Take care, thinking of you,

Gritty,

PS Yes, do check out the 'PBC foundation' - link to their website at top. Their advisors are wonderful and learned, while their website is full of info - you may have to join the 'PBC F' to get full access, but it's free. Do please talk to them, as they are very supportive.

[Suz_anne in reply to GrittyReads]

Thank you for your reply! I will also ask for the GGT test as well as the AMA and IgM and a repeat of my LFT. They were focusing a lot more on a possible pancreatic problem even though my scans showed liver abnormalities. My BMs have been pale and float (sorry for tmi) indicating something is going on with fat absorption, and they thought is was my pancreas, but it has shown all clear. Since my bile ducts are dialated inside and out as shown on scan and I have bilirubin in my urine, I don’t know why they haven’t thought to see if my liver is the culprit of all this misery.

I don’t drink and have never used drugs, so I have no idea why I would have liver damage. I am 43 years old, still have monthly menses (that have been really erratic the past two months- no one in my family goes through menopause until their mid 50’s), am hypothyroid and have been for 20 years, as well have having. Endometriosis for the past 20 years.

I will let you all know what the labs show. Please let me know if I need to ask for anything else. Thank you so much!

[GrittyReads]

I cannot think of anything else, but the symptoms you describe are typical of PBC. Don't worry if this is the case, as nowadays the medication helps most people very quickly and there are also lots of other ideas in the pipeline. However, don't read the stuff about PBC that is on the general website, as much of it is horribly out-of-date and overly scary. As I said, the best place to check anything is the 'PBC Foundation' website: why not just check it out, it's a really good site. I know a lot of PBC folk in the States prefer this UK site to the US PBC sites. They also have a 'diagnosis summary' document on their website, you might want to copy it, to show to your healthcare people.

Meanwhile, treat yourself, have fun, do things you love and that make you happy. Stress is the worst for all autoimmune conditions, so give yourself a boost whenever you can, and don't worry. At least now you know a bit more about where you are.

[Suz_anne in reply to GrittyReads]

Thank you. I am very grateful for the kindness. It has been a frustrating and scary few months.

[Ballymahon2]

Lots of good advice there suzanne good luck

[Suz_anne in reply to Ballymahon2]

Thank you!

I am awaiting the results and will update. I am happy my doc listened and ordered the AMA test along with a couple others.

He also scheduled a HIDA scan.