What should I ask for when testing for pbc?

[Rimeru]

Given that my mother has it, and I am one of three sons she has, I was wondering what kind of blood test should I ask for to my primary care doctor to test if I too also have pbc, can I be too young to be tested? I'm 25 and worried I will have it as well Thanks in advance!

[4pjx__]

Rimeru, your concern for your mom is so sweet. To get a positive test for PBC you need to test positive for anti mitochondrial antibodies, a raised ALP and a raised billirubin.

I have 4 grown children and 1 of them was sure she had PBC too becasuse she was so itchy. She went in for the tests but it turned out she didn't have PBC but has a lot of allergies and that was the cause for the itching. While it is possible for men to have PBC and there are a few men on this forum, most of us are women. So because you are male your chances of having it are not as great. I asked my hepatologist of all my children should be tested and he said "no" it wasn't necessary but they do have an increased risk. I wouldn't worry too much if I were you unless you have symptoms. Which the main ones are itching and tiredness. ..or if you had liver function tests that came back on the high side.

Don't worry too much, if you think it would put your mind at ease you should fo ahead and get tested. I am placing my bets that you are just fine. 😉

Good luck!

Pam

[Rimeru in reply to 4pjx__]

Thank you so much for reassuring my worries, it makes me feel much better hearing how your children have not gotten it and that it is rare in men. I don't have either of those symptoms so that's good news. I was so worried I looked at my blood work 3 years ago and all of what you said to look out for were in the normal range. I will however try and get tested for peace of mind. Thanks again and good luck to you as well

[4pjx__ in reply to Rimeru]

Your welcome and keep us posted about how your mom is doing.

--Pam

[Rimeru in reply to 4pjx__]

Will do!

[GrittyReads]

NB If you only have AMAs, that alone is not enough for a diagnosis of PBC.

Your liver function tests should be taken, and if the levels of all the relevant associated liver chemicals are all okay, then you probably don't have PBC. But if you do have AMAs then you should be tested every year, in case PBC develops.

[KristinCC in reply to GrittyReads]

What would be other causes for positive AMA's?

[gwillistexas in reply to KristinCC]

I believe there are 9 anti mitochondrial codes with M2 being more suggestive of PBC but not that alone. So I suppose you might try to research anti mitochondrial. I found that M1,2,5 &6 are associated with a variety of conditions.

[KristinCC in reply to gwillistexas]

Thanks for replying. I was diagnosed with PBC in 2016 with positive AMA and liver biopsy. Some people in the forum were suggesting that perhaps I don't really have it because my liver enzymes are now within normal range and I'm not taking URSO. I'm just trying to figure out what else it could be besides PBC. There aren't any heptologists on my health plan so I've been relying on my gastroenterologist who I'm not sure knows that much about PBC.

[gwillistexas in reply to KristinCC]

I have friend who was treated for PBC for a couple years. She found out recently that her AMA is normal and LFT’s are normal. Her hepatologist determined that he believes her problems were caused by a statin she took for several years. Apparently her liver has slowly healed itself. My AMA hasn’t been repeated but I was diagnosed by that and elevated enzymes. I tell my dr I’m not so sure I have PBC because I have none of the typical symptoms. They say I definitely do. It would be beneficial if you could find a good hepatologist. Are there none anywhere close to you?

[KristinCC in reply to gwillistexas]

There are some heptologists that are affiliated with the teaching hospital in my city, but they aren't covered under my health plan. It would be very expensive to go out of network to see one.

My family doctor questions the PBC diagnosis, but the gastroenterologist says it can't be anything else. My mom died from liver disease and he was her doctor, though she did not have PBC.

[gwillistexas in reply to KristinCC]

Some GI’s are very well educated with the liver. When my Internist diagnosed me, he sent me to a GI. I was surprised this guy knew so much. Then I saw his NP thereafter and she was loaded with knowledge. About a year later I started with a hepatologist. So if your GI has the knowledge and hepatologists aren’t covered, then I suppose you trust the GI. Kind of a hard place to be not knowing.

[KristinCC in reply to gwillistexas]

True. And I did like my GI, but after 3 years of normal liver numbers he told me he didn't need to see me anymore and I should only come back if I had problems. It was upsetting and made me question if he really knew anything about PBC. I know I need to find a new GI, but COVID is making it hard.

[ninjagirlwebb in reply to KristinCC]

There are folks on this forum who have positive AMAs, normal LFTs who are not diagnosed with pbc. They just have their bloodwork monitored in case pbc develops.

An in depth blood panel was done by my hepatologist. These were not things my GI would be cognizant of to test for. My GI told me to go see the hepatologist. I, then did the liver biospy & was diagnosed with the pbc.

Does your insurance possibly cover a hepatologist in a nearby state? It might be worth the effort to go see one. I live in the NY metropolitan area and people from surrounding states go to nyc for specialists as some of the best doctors practice here.

Or with virtual appointments now available, you don't even have to travel. The doctor can order the labs for you & you can go to a lab to have them done & have the hepatologist review with you in a virtual appointment.

I recently did a virtual appointment with my hepatologist as I had my labs done by another doctor.

Hope you get some answers. At the very least have your family doctor do the needed labs for monitoring until you find a new GI or a hepatologist.

[KristinCC in reply to ninjagirlwebb]

I've never considered having my GP do labs first to make it less expensive since those will be in network. That's a great idea!

Unfortunately, even though I have a great insurance plan through my employer, our carrier is very conservative in what they will cover. They would pay the out of network cost for a heptologist, but they would never pay for a doctor out of state or someone not on my plan.

I just need to quit fretting about it and make an appointment

[ninjagirlwebb in reply to KristinCC]

I had my annual physical so I told the doctor to run everything for me. I got a copy of the results & sent the relevant items to my hepatologist and endocrinologist who monitors my tsh for my thyroid.

Usually my hepatologist runs all my labs for me as I see him more frequent than the others. I don’t want to have my blood drawn multiple times at different doctors.

Well...I think you don’t need to worry too much if your LFTs are normal. The hepatologist looks at that and also focuses on alk phos and direct bilirubin. Have your GP run your liver panel and if those items ever track off range, then follow up.

Haley

[ninjagirlwebb in reply to gwillistexas]

I was originally convinced that my elevated LFTs was due to statin use (at that time though I had abnormal levels of immuglobins, I didn't know enough about them to factor or triangulate into the big picture), so I stop taking the statin for many months. However, my LFTs remained slightly abnormal & my GI pushed me to get a liver biopsy.

I would have been diagnosed much earlier if I were not stubborn. Fortunately PBC is a slow progressing condition.