Not yet diagnosed. Referred to QE Birmingham, for first appointment. Blog Number 1.

[JaneinBrum]

Not yet diagnosed.

Born 1965. Live in Birmingham UK. Referred to QE based on Low platelet levels, and suspect PBC. First appointment soon.

I am very grateful to that newly qualified GP, who followed up on blood tests that were a little off. I have been complaining of issues for a long time and had loads of different tests over the years. Never really finding anything.

Referral now for liver and also Blood to the QE.

For most of my adult life I have had issues with tiredness and sick leave. Very scared about diagnosis but also relieved to finally have some sort of explanation.

So I have platelet count a bit low 130.

Bloods that are consistent with PBC.

GP sent me in for Ultra sound and MRI very quickly. Assured me I didn't have any signs of tumours. (news to me that was being looked for). It had been noted I had an enlarged Spleen and ripples on my Liver. (no further info as a consultant would be needed to look at this.)

Of course I then went researching. Hence here.

My background.

I have managed to hold down a career even though I have had lots of sick leave. The company doctor has also been part of the picture and tells me I was lucky this has been found. At my age (menopausal), with a professional job (engineer), demanding kids (teenage), dependant mom (80) and diabetes, there are lots of reasons I might be tired. Up till now I have prioritised work and family. To be able to do this I lean on my husband all the time, and up till now he has been really supportive of me.

But he is as scared as me at this moment. So once diagnosed I think something is going to have to give in my life. My perspective is changing and the balance has to shift. I intend to keep posting (blogging) for a bit. Hope it is at least interesting to see what happened to me right at the beginning of the diagnostic process.

Hope your all as well as you can be.

Jane

[Hidden]

hi you sound busy in general never mind sickness as well i to was like u routine bloods picked up pbc 8yr ago when first went to QE seen proffessor nuyberger he was great and told me i would die with it rather than of it took a few mins to digest coz obv u only here the word die but since then im ok on pbc side slow progress on urso tabs and im responding had fibre scan last week which shows up scarring of liver normal result got abdo scan today and next week back at consultant my vit d was low in march coz they watch that coz of bones they migbt even give u a bone density scan at some point they normally take lots of bloods on every visit with doc and send results to gp or you can register on myhealthqehb site. y platelets were same as yours 130 sorry i waffled on but it really is nt as bad as i was thinking good luck with appt and warn you its a very busy clinic but well organised x

[Hidden]

i also have fibromyalgia which causes so many probs

[butterflyEi]

Hi JaneinBrum

welcome but of course sorry you have to be here. Birmingham for PBC is a centre of excellence so if this is visited upon you from what I understand you could not be in a better place. If you are not already a member free to join is the PBC Foundation website in the members section there is a compendium and some video recordings. There is one of the specialist, I think Prof. Jones, and a new patient where they run through what can be expected. There is also a leaflet which can be downloaded for youngsters, family members and the doctor. Howevef it wld seem you have found a good GP.

Like you and many others I went undiagnosed for at least 10 years but once on ursodeoxycholic acid I found a general improvement for a long while. Unfortunately after a stressful event the itch appeared and I am still trying to get rid of it.

Take a book or something to occupy yourself, clinics are busy and the wait may be long.

There are others on here attending the same hospital, hopefully one will come along soon and give you more info.

Be careful of old information on the internet some of it can be scary. I believe the PBC Foundation had a member who died at 103. Once prescribed URSO most of us respond well. Fortunately for those who don't there is now just this year alternative in the guise of Ocaliva.

Keep us posted and best wishes being sent across the ether.

[4pjx__]

Good luck to you. I imagine your blogs to be pretty interesting.

[Jeanb47]

Jane

I’m with you all the way. I have a similar story

I’m a retired nurse so finding it hard that my profession of health care had let me down for so long. But I’m moving on.

Getting depressed so seeking counseling l will keep you my thoughts. Good luck

J