PBC : I asked my PBC Consultant today "Should... - PBC Foundation

PBC Foundation
7,592 members6,457 posts

PBC

I asked my PBC Consultant today "Should I get my son tested for PBC?" He replied. No not at all. Men don't get it.

God help us all the men out there with PBC. Hope you Doctor has more brains than mine.

24 Replies
oldestnewest

I’m sure your son should be tested

Reply

I asked my consultant the same question about my son and daughter, she said No routine testing wasn’t necessary, unless they were showing symptoms.

Reply

I would not get him tested unless he is feeling unwell, or showing symptoms you could take the paperwork to show doctor about men being diagnosed. 1/10 is the number for men or 9/10 women.

2 likes
Reply

I agree! I wouldn't bother either unless feeling poorly as it's hard enough to detect in the early stages anyway! I'm under investigation for PBC

and it's so long winded ! However everyone's been so intentive towards me, so no complains!

I wouldn't worry your son, let him enjoy life!

X

1 like
Reply

I agree with letting her son enjoy life but why not just check blood work. I thought they it's part of an annual physical?

1 like
Reply

If her son's due an annual check over then it wont hurt I guess!

Reply

It’s not hereditary, so I’ve read. And yes men can have it.... I do! And my uncle has it as well.

4 likes
Reply

I don't believe that its not hereditary as my father had PBC, sister and myself both have PBC.

4 likes
Reply

Yes my sister also has p b c shes 10 year younger than me

1 like
Reply

I believe it can be hereditary but we don't know what our ancestors had in past generations. My grandmother passed away when my dad was 4 and I was never told why. I don't even know if my dad knew. I often wonder if my dad had it and Drs just didn't know. My daughters tell me he had some of the same issues

Reply

sciencedaily.com/releases/2...

Morning...you might find this article of interest...be well

1 like
Reply

Huh...tell that to my husband who has PBC... DoreenD is correct with her stats. I think children of PBC patients should at least have their liver panel checked with yearly bloodwork to keep an eye on things, whether male or female.

4 likes
Reply

I have made an appointment with my Doctor to ask for a new consultant. If he doesn't know the basics. How can I feel confident in him. Google had more knowledge than him and I don't think Google went to Med School lol.

1 like
Reply

And we all know not to trust Dr. Google either, so good for you for being proactive. Yes, a new doc is a good idea. The first specialist we saw could only ask how much my husband drank, over and over as if we were lying. He hardly ever drank then , and now not at all, but this doc was clueless! So glad we also asked our family GP for another referral...it saved his life! Keep being that squeaky wheel as it is the only way to get the grease! 😉

1 like
Reply

Yes first thing I say to people that's it's not drink related.

Reply

That's rubbish its not that they don't get it - just that it tends to be more women that are affected. My father had PBC as do my sister and myself, brothers have not been tested yet.

2 likes
Reply

Totally agree with you. I think the consultant is in the wrong job. In process of asking for a different consultant

Reply

I would not get him tested, only 1 man out of 9 women could get it. Not had my 2 children tested.

1 like
Reply

Hello.

A check up can only do good. Men don't get it? Well, 9 out of 10 are women and only 1 out of 10 are men. But I am a man and I have it. And my grandfather had it as well. When I was tested positive for PBC , the first thing that I was asked was who else has it in the family. Not if any women have it, but generally who else. My advice: get yourself a new doctor.

Have a great day.

1 like
Reply

In the process of requesting new Consultant. My post was not really about getting my son tested but more the ignorance of my consultant. I had to tell him that men could and do get it and his reply was he didnt know men could and he hasn't delt with any men with PBC. He must have skipped that bit in Med School.

Reply

Oh my God he actually said that?! Unbelievable! And to think that people's lives are depending on ignorant doctors like said individual. Kudos to you for finding a new consultant.

2 likes
Reply

I too believe, what's the harm in running a liver enzyme level once a year? If diabetes is highly prevalent in the family, you test your kids annually. If your mother got breast cancer at a young age, you begin mammograms earlier than other women. I would just ask their PCP next time you are there to run a liver panel & CBC, then they will have a baseline on record at least. 💜💜

Reply

I am 78 years old man and was diagnosed with PBC six months ago.

Reply

I am reluctant to tell my adult children of my condition because I do not want them to get tested yet. Not only are the odds apparently very slim they will suffer from PBC (especially boys) but there may be consequences in terms of mortgages, insurance etc. I also don't want them worrying about something that might not happen. Both my Gastro and Liver specialist said getting them tested was not necessary.

Any thoughts?

Reply

You may also like...