Looking for support

[Nct1982]

Hi

I’m a 36 yr old Mum of 2. I haven’t actually been diagnosed with PBC, but I’m expecting the results from AMA test this week. I’m struggling so much with anxiety and so so scared for the future.

A bit of background, I have been suffering from fatigue for a number of years. Last Oct (2017) my GP did blood tests which showed raised ferritin (191) and raised ALP (154). He repeated after 3 months, ferritin had gone down to 164 and ALP remained about the same at 157. He wasn’t concerned as ferritin had lowered and so that was that. Fast forward to this Oct I went back again about the fatigue and ALP/ferritin still raised (iron and saturation low so not heamochromitosis). I had an ultra sound which did show mild fatty liver but in past month I have started to feel some liver aches and mild itchy skin.

I also have normal total bilirubin but elevated conjugated bilirubin (7). Ive read bilirubin doesn’t usually become elevated until later in the Disease.

I’m certain I have PBC and I’m so scared and upset. I’m struggling to put on a brave face for my children and have barely slept for past 3 weeks. Lucky to get 2 hours each night.

Please help x

[ENuk]

It is natural to feel worried but PBC is not as scary as the internet might have you believe.

I would recommend you contact the PBC foundation and get their fact sheet. The common used phrase is that "Most people die with PBC, not from it"

We have similar timelines as I had elevated LFTs in November 2017 and then a scan which showed lesions in December 2017. At that time a rare cancer was suspected and it is only in recent months that I have been diagnosed with PBC.

I am now on Urso and so far so good. No side affects.

It is likely you will be referred to a hepatologist, where are you based? I think you will find it very reassuring. You will likely to be offered a Fibroscan which will provide more information on the stage you are at.

You are however likely to be in the early stages and progress can be slow, plus Urso/medication will help to further slow down the condition. We are fortunate as there is lots more medical help/information on the condition so you can be positive.

I have children and feel I can mostly get on with my life. I am more tired than I was and I have more expensive travel insurance but generally it doesn't impact my life. Lots to be positive about.

I now just accept that there will be some uncertainty as Drs need to review your results over a period of time to understand the trend. If you are very anxious then ask your GP if you can be referred to a specialist as I am sure that will help you.

[ENuk in reply to ENuk]

Robert has a really useful post that is pinned called "PBC and Life Expectancy" I find it really reassuring as it seems to match what you will be told by Drs and also what people on this site will post.

[Nct1982 in reply to ENuk]

Hi,

Thank you so much for your encouraging post. I’m in Bedfordshire. If my AMA test comes back positive I am going to ask for a referral to King’s College in London as recommended by PBC foundation.

Did you have a positive AMA test?

Do you mind me asking your age? I’ve heard URSO can be less effective in younger people which is worrying x

[ENuk in reply to Nct1982]

Hi, I'm in Herts so not far and attend the Royal Free.

I'm 43.

The benefits of being younger is that medical advances are being made so in a few years there will be more progress. You will generally be healthier as well so more positives than negatives.

I am taking the view that with all the monitoring I am in good hands. My bloods tests are extensive so it's like a regular health check

My GP said so many people have liver or other organ conditions that they are not aware of so it's positive we have been picked up. I have found the service excellent in Royal Free.

Yes AMA is positive.

Most annoying factor is having to have regular prescriptions and remember to take medication!

[Mole in reply to Nct1982]

I've been with King's College for 6 years. They are very good, as I expect most UK hospitals with a proper liver specialist department are. Remember most people respond to URSO. I remember feeling really terrified but now I'm just getting on with my life and don't even think about it that much. Take care x

[Skypony]

Hi, oh I'm so sorry you're feeling scared and I know it's very difficult to stay calm and positive (been there!). Your LFT's don't sound dreadful though, and you'll know your AMA status soon.

Try interrupting your anxious thoughts by deliberately cutting them off (clap your hands once or say 'no!') which marks the end of that train of thought. You're not allowed to go back to it, so distract yourself with something that keeps you busy. Believe you can do it, and it works. At night, use YouTube to find some relaxing 'sleep music' and again, don't allow a downward spiral to get hold - you're only allowed 3 seconds of those thoughts before you cut them off.

If this turns out to be PBC you'll never meet a nicer or more knowledgeable group of people than on this forum, and the PBC Foundation is a remarkable resource.

Be reassured by ENuk's excellent answer and others who will follow - most of us remain pretty well and just get on with our lives, enjoying a normal lifespan.

Please report back when you know your AMA. In the meantime, very best wishes, and get some sleep!

[Nct1982 in reply to Skypony]

Thank you so much for your lovely reply. I will keep you posted when I receive my results xx

[mjmarmon]

Hello. I'm so sorry about all of this, and I understand how you feel. I am 45 and was just diagnosed in June of this year. I'm still waiting to see a hepatologist - my appointment is in February. I have been feeling a variety of emotions, much like you. I have been a single mom for many years. My children are grown now and I'm expecting my first grandchild in May. My emotions go from depression, to anxiety to anger and feeling shorted in life. I have been feeling very fatigued as well. I know part of my fatigue is due to the emotional roller coaster I've been on. It's hard to not think about all of this constantly, but....that is doing nothing positive for you or your children. Instead, it is stealing valuable time from you and them (speaking from experience). Trust in your care team and try to stay focus on the positive things in your life. I have to remind myself of these things daily. Sending big hugs from the U.S..

[Sachin1234]

I think you are stressing too much about your future which know one know waht will be the outcome🤗 I know you will be anxious till the diagnosis but still try to come down and live happy life with your kids.. 🙏

[jane1964]

Hello I was 42 when diagnosed although I think symptoms started around age 40.I was frightening too but I responded to Urso and now am 54 and my liver is still reasonably ok I have progressed to early cirrhosis but progression is so slow my doctor's think I will not be likely to ever need a transplant.it is frightening but I think I felt better knowing what was wrong once I got over the shock and it's definitely better to be on treatment if you need it. Jane.

[liver-bird]

Try not to worry - deal with what is rather than what might be. If it turns out to be PBC its not the end of the world. Many of us live normal lives just taking our medication and pacing ourselves. You can handle it with a positive attitude and support from your family. Let us know how you get on. We really care ☺☺ Big hug