Waiting for biopsy

[Bettyfinn]

Hi everyone.  I am 34 years old. I have two kids:. 3 years and 6 months.  I have high liver enzymes and itchy skin. Now waiting for a liver biopsy to give an official diagnosis but the writing seems to be in the wall. What else could it be, right?   I'm terrified.  What can I do? 

[LindyRich]

Sorry to hear you are in this situation.

First of all don't panic.  Next do not Google PBC. There is a lot of old, inaccurate and irrelevant information on the net. Next check out the  PBC foundation website. The information  on there is up to date and will help you.

LiverNorth also do a dvd you can send for. It's informative and easy to understand.

⚠PBC is a slow progressing condition and you don't know for sure if you have it yet. So try not to worry too much.⚠

Many more members on this forum will reassure you.  There is a wealth of experience on here.  They supported me when I was diagnosed in March. Priceless.

Take care of yourself (and your children)

Best wishes ☺

[Bettyfinn in reply to LindyRich]

Thank you! 

[Hidden]

Hello Bettyfin.

There are other liver disorders that can give the same symptons (pruritis (itching)) is one along with higher than normal liver function test (LFTs).  It doesn't necessarily mean you have PBC.

I started to itch early 2010 and was diagnosed with PBC December 2010.

I am in the UK and a certain pathway is followed to come to certain diagnoses.  After my GP exhausted blood work that he could do and ruled out other things (ie it was liver related and not bone related as these both can give higher LFTs nor did I have Wilson's Disease (copper overload), etc) I was referred to hospital where I saw a consultant later 2010.  That day he performed an antibodies check (the ANAs and also AMAs) of which I was found to have a high titre of AMAs that tend to be present with PBC.  Along with my symptons at the time (itching - still do - and fatigue - no longer have) and higher LFTs he diagnosed PBC.  Due to these factors I didn't need a biopsy.

My GP never  mentioned PBC along the way in 2010 but I did stumble across it in a library ref book during the time I kept having bloods done.  I was also aware there were other liver conditions but I just didn't want to think about any.  I really did think that due to my lifestyle at the time (running round like a headless chicken working too much) it was just a temporary hitch.

PSC is also another liver disorder as is something known as NAFLD and NASH.  I am sure your biopsy will give the doctor some idea of what you might have but it might also be something that can be easily treat and not long-term (I can't say of course as I am no doctor and don't know).

[Bettyfinn in reply to Hidden]

Thanks for the hope. I know that PBC is a strong possibility but I'm nowhere near acceptance. I can't sleep. Can't eat. All that stuff. I really appreciate your reply. 

[Ilovetacos2 in reply to Bettyfinn]

I was diagnosed with PBC back 15 yrs ago, had the itching going on, confused.. worried as you are..after going on Ursidol, 3x300 mg per day, itching went away..I visit my Gastro dr. pretty much once a yr, my blood tests show very little, if any changes. Just within the last 2 months my itching started up again, again my blood tests were good, dr.  is puzzled, tried diff med's with no success. I ended up with Allergist dr. & she seems to be helping! im on low dosage of predistone, plus allergy pill & itching is gone! Too early to tell, (2wks) but so far so good. So..itching can be due to other health issues. Good luck with your issue, & certainly know that its very treatable & slow progressing,  I had almost forgotten I had it...

[Bettyfinn in reply to Ilovetacos2]

I am so happy for you.  That's all really hopeful info for me. Thank you 

[Twinkle26]

Hi bettyfinn, almost everything has been said,

But what I would say is try not to worry about stuff you can't change, it's hard I know but if you worry about this too it's not going to change the outcome - I am waiting on a biopsy too and yes it's scary but we've had children and that's scary too but we still did it?

You will cope with whatever it turns out to be Pbc or not.

Keep us updated on your progress and best wishes.

Carol

[littysgirl]

Bettyfinn,  Hi and welcome - even though you don't really want to be here!  I was recently diagnosed with PBC (although it's still a little up in the air if that's the only thing going on with me because apparently I don't quite fit the mold.  No one has been very specific with me but some of the test results aren't what they would expect them to be.) At any rate, before I had the biopsy, I knew that it wasn't a tumor and it wasn't cancer and that if it was PBC or autoimmune hepatitis, either one has a name, a treatment and was something that you just live with. Now I'm taking 4 pills a day, two in the morning and two at night. At first I had a reaction to the drug  but after two weeks, those symptoms are gone. My body has adjusted to it.  I go back to my doctor in three months and will have blood drawn before I go. Then we'll look at the results and see if the medicine is doing anything. That's it. I guess I'll be going every three months indefinitely. It's something you live with.  I do understand that not knowing is very stressful but feel better that (not knowing exactly what your issues are) the diagnosis is not so terrible.   Good luck to you. 

[SimbaTutor in reply to littysgirl]

You may not be going every three months indefinitely.  I had blood work done monthly the first 6 months after diagnosis, then moved to every three months last year.  Now I am having blood work every 6 months this year with an annual doctor visit for monitoring by the gastro doc. After getting regular info about my status, it is different waiting 6 months to see what the liver numbers are doing. My doc dropped my meds slightly in December (1800 mg/day to 1500 mg/day urso) so I am looking for the info to see if my body can handle things with the lower dosage or whether I need to go back to the dosage that brought my numbers back to normal. With this disease, waiting is the name of the game for many things. 

[boneytoys]

Hi

I was diagnosed 8 or 9 years ago. I thought the world had come to an end. I gathered my family together for support and empathy. My doctor specialists handed me an information  26  page printout from the Internet and highlighted the worst case scenarios then , after 6 months, she  left the country and left me to deal with the day to day reality of PBC.

We all suffer differently. We all have it more or less. Fatigue, itching and all the other advanced stuff we know is possibly in the future left me wide awake and fearful.

I'm still here and now I manage , with the help of a new specialist, my PBC as best as I can. It's scary but so are a lot of other things. We generally have a lot more hope than people with cancer. And we most of us know we will die of something else.

I see PBC asa defining disease and we are most of lucky in that the expensive drug medication we are given, works. In time you will appreciate PBC it for what it is. In most cases , a very slow developing  auto immune disease  with a  low to moderate risk factor / potential to be life threatening . To me that's the key word. 

This site is wonderful. Some people readily respond. Others when they can and others are passive. Stay on the line and you will read over the next few months so much advice and receive so much support. Then , if it is PBC, you will deal with it in your own way and possibly for a while you will just get on and then one day you will start to respond in a different way , in an accepting way with the knowledge that most of us have that we will be all right and we will endure. And then you will find yourself writing as I and others do to support and care for a fellow PBCer. We are in this together . Take it one day at a time and you will be fine. Believe me.

[Gioielli5]

Hi are you AMA positive as well? This would indicate PBC and may mean avoiding a biopsy! Must be difficult with 2 young children but is slow developing. Good luck x

[Bettyfinn in reply to Gioielli5]

I am waiting on lab results that show AMA levels.  Other labs were high. (Either the alt or AST, I'm not entirely educated on everything yet) 

[Gioielli5]

Hi Bettyfin, it is the Alkaline phosphatase levels that are high and AMA positive which are the tell take signs. Keep being positive and take care. X

[Belliver]

Hi Bettyfinn; hope you feeling a bit better.....I live in the USA & SOME of the doctors here in the States consider a liver biopsy to be the "gold standard". From what I understand, the area biopsied may not show much re PBC, but it will be a good baseline exam, if nothing else.  I see a hepatologist at the local transplant center-- not because I need a transplant BUT because that's where you find the Hepatologists ( liver Doctor). I strongly recommend that PBC patients see a Hepatologist at least once & hopefully on a regular basis, perhaps in conjunction with your Gastroenterologist ( depends how medical resources distributed in your part of the world). Absolutely, do not panic! Write down the questions to ask the doctor--- why does dr think this is whatever it is?What else could it be? Who & where are the top people studying this disorder? What other conditions are Assoc with this diagnosis ( auto immune disorders) Should you have regularly scheduled blood tests & what components need to be tested? What dietary recommendations does he have? Are your fatty vitamin levels being checked(A,D, E, K)? How often should they be checked? Review your vaccination history with dr-- my GAstroenterologist recommended I immediately get the Hep A & Hep B vaccinations--- ( to protect the liver). Also, ask about alcohol consumption. Do they want you to start taking Urso? No matter what this turns out to be, keep copies of your medical records, blood tests, Ultrasounds, CTs & the reports,etc, so when you see various doctors for other issues , you don't have duplication of tests. Also, you're 3 months postpartum, double check with Obs/Gyn that this not some obscure ,weird pregnancy related thing. Finally, do not start taking any OTC (snake oil )products due to panic or despair-- my liver dr gets quite animated on THAT subject...(only God knows what's in them,blah, blah!!).......Best of luck, let us know how you do!

[Bettyfinn in reply to Belliver]

Those are very helpful tips. Thank you for taking the time to share with me.  Much appreciated 

[wilsonmk17]

It is scary once you find out you have PBC, but know that there are others out there that were in your same boat.  I kept having high liver enzyme levels each year in my blood test and finally my GP wanted me to see a specialist.  So I did and ended up having a liver biopsy to verify that I do indeed have PBC.  For 10 years I never had any symptoms of PBC until I had surgery on my feet and wow all of a sudden the itching was full force.  Luckily I live close enough to Mayo Clinic in Minnesota and was sent to a liver Dr. up there and he kept me on the ursidol plus for the itch he gave me Prevalite Powder (Cholestyramine).  Now this stuff doesn't taste good but found if you mix it with orange juice or pineapple juice I can drink it.  It really does help with the itch.  The Dr. at Mayo said that there is supposed to be new medicine for the itch released by the FDA but it won't be generic so the cost will be high plus of course side-effects.  So I'm staying with the Prevalite Powder.  I do have muscle aches and end up taking Ibuprofrin for the aches which help, but my Dr. at Mayo said taking 2-3 a day was ok.  I am to meet with a rheumatologist in June so I'm hoping to see about the muscle aches since they said I don't have RA.  All I do know is to keep taking calcium with vitamin D when you take Urisodol as it will help with your bones as they will want to take bone density test to see how you are doing.  But just hang in there, and do talk to your GP or ask to see a specialist.

[Bettyfinn in reply to wilsonmk17]

Im glad you've found things that work. And of course it's always good to hear that science is working towards finding medications that help. Thank you!

[cazer]

Bettyfin dont panic...its not going to change anythimg if the biopsy is positive you will still be you.it will just be yhat yoi have a diagnosis.you can then have the right treatment.

I was diagnosed im 2000 i had a small baby at the time and 3 others 3 7 and 10.the littlest is now 17.

Its been hard but we have all the kids are doing well despite my problems.

There are a lot worse things to be diagnosed with  thats what i think.

Try not to get too panicky about pbc there are lots of different paths this disease.if you are lucky the urso which is the treatment may calm things down.

Sending my best wishes just treat yoirself kindly and enjoy the important stuff with your children.

Xx

[Bettyfinn in reply to cazer]

I do feel much more optimistic Than I did in my original post.  Everyone's comments have really helped. Thank you 

[cazer in reply to Bettyfinn]

There is life with pbc if it turns out to be something else

X

[cazer in reply to cazer]

Or that..brain not working !