PBC/AIH

[She-66]

I’ve been diagnosed with pbc crossed over with AIH … caused cirrhosis. People keep posting about all their blood numbers and figures . I’ve not had theses , nor do i understand them … any advice please 😬

North East England

[kensimmons]

They went to the doctors and had a blood test done and the numbers are the results and they are wondering what the results mean.

[AyrshireK]

In10 years my hubby has only ever seen 2 sets of blood test results (these ones done at GP's) and really you don't need them - unless you are particularly interested. If you trust that your medical team knows what they are doing and your treatment is going ok then you don't really need to know them. For some, getting the results just means they fret more.

Some people on the AIH facebook page like to get their results and keep a folder showing trends of their levels to make sure meds are working but as you say you don't know/understand bloods and figures so let the doctors (who do know) keep an eye on them.

Katie

[She-66 in reply to AyrshireK]

Thanks for that . Just keep seeing people post all their numbers and results and wondered if I should know mine . Ah I’ll leave it to the professionals!

[HB70 in reply to She-66]

If you ask the nurse when you ring up for results they can text them to you, that's what happens at my practice anyway. I didn't realize until recently.

[Kakey]

I always get a copy of my results. I have PBC. My consultant has ignored me for the last 2 years (since my diagnosis), so I feel I have to be on top of things. I've had to chase up a dosage change, for example.

But your situation is totally different, and I would like to think you are being well cared for. I'm sure that they are doing a good job of monitoring your results.

[She-66]

With being new diagnosed I haven’t got a clue at the minute . I’ll keep my ears open and ask more questions maybe x

[TBSW in reply to She-66]

Normally after a consultation you get a letter confirming what was discussed and the plan moving forward. Maybe if your curious about your blood tests you can ask your consultant to add the results at the bottom of the letter. You can then Google the normal ranges. Although this will give you the exact information, it should be left to a physician to interpret them and advise what it means for your individual case. You may see people post their numbers on this forum, but nobody here is qualified to give you any answers.

[Kakey in reply to TBSW]

Are you in the U.K? I'm so surprised by what you say is the norm.

[Ubwa in reply to Kakey]

I have access to my blood results from both the hospital and my GP online whenever I need them. I am the UK. Most trusts/GPs have online systems now, but sadly not all.

In an ideal world there would be one NHS system you would have access too but that will likely never happen.

[She-66 in reply to Kakey]

Yea am I’m the uk

[She-66 in reply to Kakey]

Not had My letter yet from consultation

[AyrshireK in reply to Kakey]

We've never had such a letter in 10 years - obviously must vary from hospital to hospital so certainly not standard procedure.

[TBSW in reply to Kakey]

In the UK. I have access to my hospital blood tests the day after their taken. This is via QEH Birmingham, patient portal. I then can see the letter to my GP/ local consultant once it's typed, via the same Portal, but I normally get a hard copy aswell. Although I can't see test results from my GP or local consultant, I always receive a letter with an interpretation of the results and an update and future plan.

[Readlots]

If you want to know more about your blood test results, The PBC Foundation ran a ‘know your numbers’ campaign a few years back. They have lots of useful information on their website pbcfoundation.org.uk/newly-.... My consultant sends a letter to my GP after each appointment and copies me in. He doesn’t include my blood results but I can see them on the NHS ap. I had to ask my GP to give me access to that part of the ap.

[She-66 in reply to Readlots]

Aah thanks . Not got the hosp letter yet but I’ve requested a copy

[Readlots in reply to She-66]

My Mum lived to 75 with PBC for 20 years - your liver is an amazing organ so don’t worry if you see numbers that seem alarming, they will improve with treatment. I also have AIH/PBC and have been working full time although I’ve just decided to reduce my hours to get a better work life balance. I know it’s scary when you’re first diagnosed but there’s lots of support out there.

[Hidden]

Hi and welcome,

Here is a link to 'liver disease tests explained' that may be of help with general understanding;

britishlivertrust.org.uk/wp...

[She-66]

Aaah thanks that’s brilliant