I have negative AMA, abnormal ALTs, high cholesterol, chronic fatigue and itchy rashed skin,and a Mum who died of liver cirrhosis after PBC when she was 56. She had similar symptoms to fibromyalgia (not diagnosed with PBC until after death in post mortem so I assume she was AMA negative) for many years, and a few years ago I was diagnosed with Fibromyagia.
I have been badgering GPs to let me have further liver tests but UP UNTIL this week, I had no abnormal LFTs. Now I have these markers, should I insist on a reference for a scan or biopsy when I go to the GPs tomorrow, and could anyone tell me what is the best scan to request (so I don't look a dope).
I had an ultrasound on my abdomen 5 years ago which showed a fatty liver, a thing which has only pursuaded the GPs that I eat like a pig and do no exercise. I have been told an ultrasound doesn't show the bile ducts though.
Any feedback before I brave the doctor again in the morning would be great, please.
Thanx
Glenys
Sheffield
UK
Written by
Glenys
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You poor thing Glenys, you insist on seeing a specialist, no arguments,, if your mother had PBC that is enought to have you properly tested. Bloody GP's know so little about it,it totally disgust me the way we are treated. be firm and demand to see a gastro or heptologist, immediately.To me you have signs that must be investigated, so sorry to hear how hard it is to be listened to, be srtong and firm and demand now not later , good luck, please let me know how you get on,xx thinking of you>
Thanks for replying. It's lovely to hear from someone who understands. I am usually labelled a hypochondriac (spelling??), but from what I have read I should be worried that I have a brain tumor instead (I say that because it always states in the definitions that hypochondriacs are worried about tension headaches being brain tumors)! I am determined that I am going to get a reference this time based on symptoms and heredity alone (s&d the blood tests if they try and underplay the LFTs).
If I can contain myself I will try and post the outcome here later.
Why not put all your worries in a letter to your GP, so that he really takes on board how worried you are. Explain about your mother, and what your concerns are for your future. I think when he sees it in black and white, he may agree to arrange the scans you need.
Be strong - your family history is very important . If it was breast cancer he would be listening?... maybe...? Sounds like a lazy GP.
I feel a GP is your first point of reference these days.. he/she is the person to send you onto the specialist. insist.
I have had similar shoulder shrugging from GP. They don't know about PBC and don't seem to want to bother to learn as the specialist is there.
I get so cross...just like LIsac...
You go girl... as they say. Let us know how you go. X
Hello Glenys.
Unfortunately it is a sad fact now that the NHS has guidelines for patients with symptons, abnormal bloods, etc and it looks like a maze to follow for GPs.
I did once find this maze as I did know about it. If someone goes to the GPs with certain symptons, in my case back in 2010 fatigue at the time and itching. The first thought from the GP was some allergy to something but he did order some blood tests, one being the LFTs.
When they came back abnormal he started on other bloods to rule this and that out before almost exhausting them and sending me for a scan when bloods were showing definite liver problem.
After that and a pretty normal looking scan but continuing slowly rising LFTs he referred me to the out-patients to hepatology.
I your case Glenys I would expect the GP to repeat your bloods again to recheck. If you go for a scan it seems the norm here in England to start with ultrasound but we keep hearing about 'the postcode lottery' with different Trusts. That seems the norm in Lancs with the NHS anyway.
There's be no harm in suggesting to the GP perhaps you could put yourself more at ease and due to your late mother being discovered to have PBC after her death, drop in a scan. After all the scan doesn't take very long and it's done within about 10mins even tho' the wait at the hospital dept seems to take much much longer.
Have you another GP in your practice you could perhaps talk to as opposed to the one who seemingly has refused? 2yrs ago I finally went to the GP as on/off I had been having notso severe nosebleeds. The GP didn'[t take seriously but last yr. after me returning yet again he referred me to outpatients ENT. I had a simple cauterisation as it was discovered I had a small graze inside my nose and that was the cause. The first one didn't work and after discharge I had to contact the GP again to make another referral. He refused at the time, said to wait a bit longer.
I ended up waiting another month and then going back to surgery with an appt in person (the previous one was by phone) and he agreed to refer me back.
So my moral is you have to be persuasive if you think it necessary. My husband normally comes along with me so I have that other voice.
Been to GP and she is sending me for more LFTs in a month. The one thing she did tell me was, however, that my Vit D is soooo low that it was in the "red zone" of her chart, and has given me some Vit D "Bombs" (as I call them, as they are massive) and a Calcium Vit D supplement. I have to take the bombs one a week and the chewable tabs X2 a day. Only prob is I was dispensed the calcium only tabs in error, so have to go back and get the others later today. Blood test for vit D again in 3 months, and hope to feel better, as Fatigue and pain all fits in with low vitD and she said she wasn't surprised I hurt every where with a level so low!
Lets hope she's right on that score,as I wonder now how long I have had a deficiency - could be months!
Will keep posted, as I still have an inkling it wont be the last of it.
Thanks for all who posted back and I will use this advise, as yes I think it does need to be in black and white!
When you go back in a months time after being on the vit D I would mention then how worried you are about the PBC and ask to see a specialist after you have your results back. otherwise the fact that your mother had it is going to carry on worrying you.
Thats so true. I know it won't stop worrying me. The vit D could only be something that has made a bad thing worse. When my vit D levels get up to scratch again I may still feel moderately bad - as that was my norm until it got really bad recently - so the PBC worry will still be there. If I am suddenly and miraculously "cured" and feel like a spring chick again then that would be an incentive to see if I have had a Vit D test before and what it showed.
Hello Glenys.
I thought more about your posting after adding my bit yesterday.
Vitamin D can apparently contribute to fatigue. Hopefully now the temps are starting to warm up (I'm in England) we can all get more sun and boost the Vit D levels. I was borderline Vit D defiicient in 2010 but I didn't require any Vit D supps. I then had a following 6mths check and my levels had risen right up without anything. I was in-between diagnosed with PBC.
Any meds that you might have been on recently, if you have could have given an abnormal LFT result. I know when I had my first abnormal LFT in 2010 the GP first asked if I had been 'drinking lately' and I said not. He then rechecked at a later date as alcohol can cause LFTs to rise temporarily. Obviously with me I hadn't been drinking prior to the first LFT and also I've not had any since that first one either. Subsequent blood checks for other things then showed up it was a liver and not a bone problem as abnormal LFTs can also be due to bone diseases.
The first avenue one normally takes at the hospital is a scan. Biopsies here in England anyway are only normally used if there is queries with regards to the LFTs and AMAs. I've never had a biopsy and I think there it is the hospital consultant who actually chooses a patient to have one, don't think that area is for a GP.
Hope you start to feel much better now you know you have a Vit D deficiency but I'd surely mention it to the GP about your concerns re PBC next time you visit.
Will do, Perodot. Thanks for thinking about me. I am taking a bit of a rest today. I find it hard as I have a very active mind, and have always liked to be doing something,(when not sleeping, lol), and the weather is so lovely that I have decided to sit in the garden for a bit. I will resist the urge to plant my gladioli bulbs tho!! I keep irritating a bout of tennis elbow I have at the moment, so digging and lifting are out, but do you think a can of lager might be too heavy?
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Highly positive AMA turning up now as Negative?
Have you had a liver biopsy just after PBC diagnose?
Just Diagnosed
