I need peace of mind knowing I am AMA positive and itch and suffer with fatigue really bad sometimes, but they want to just keep an eye on my liver function until they becomes elevated before they investigate any further!
It makes me so angry that they take such a blaise attitude!
Is it true that a considerable amount of damage has already been done by the time your liver function becomes elevated?
GRRRR I fed up with bloody doctors, I've always paid my taxes and worked, but the NHS make you feel so unimportant sometimes.
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skywalker
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Hi. My Lft's were elevated, my iron was down to 6 when I was admitted to hospital in May. I had Jaundice, no other symptoms. Because my blood was so low they were concerned and I had to get a blood transfusion but they kept me and did every test under the sun, Cameras, MRI, cat scan etc. Nothing showed up! Eventually when full bloods came back they zoned in on PBC and I had a biopsy to confirm. I was told the biopsy was primarily to help them decide to put me on steroids or not. Confirmation that my liver was inflamed meant that they had something to treat (they already knew his because of the jaundice, but wanted to make sure the damage was not too severe). I have been on steroids since now being weaned off. Also urso. The point is, had I no inflammation, nothing would have showed up and there would be nothing to fix. There is some debate about whether they would even prescribe urso in those circumstances but just monitor every 6 months. I do understand you just want piece of mind, but I wouldn't be overly concerned. In my case the MRI was no help.
Hi
Not sure why you need an MRI scan. I had a full ultrasound scan to show up any enlargement of the liver and also any problems with the portal vein etc. also my brother who has PSC and has had a liver transplant has rarely had any MRI scans. As Junolee say a sometimes all the tests in the world can not give you a definite answer. I also sort of understand your frustrations about the NHS but sometimes just keeping an eye is all they can do. Again watching my brother nearly die because they were waiting... Was heartbreaking, but I also understand their reasons for treating others before him. I for one would not want to be a dr in the NHS.
In the last issue of the BEAR FACTS, PBC Foundation's quarterly magazine (highly useful, check it out if you don't know it yet), Collette Thain, the CEO of PBCF, urges all patients who have problems with doctors regarding their PBC treatment or tests to communicate this to the Foundation, as they are doing their very best to help that general situation be changed. Get in touch with Collette or Robert Mitchell-Thain from the PBCF. They surely have tons of experience with such cases, from the past 16 years :).
Hello skywalker.
I also cannot fathom out the mention of MRI scan. Or do you mean an ultrasound? I had ultrasound 3mths before seeing a hospital doctor for the first time later 2010. Apparently my liver looked normal but I had abnormal LFTs (which weren't overly sky high whjjen I started itching in 2010). I think I am right in saying the GGT is a sign of inflammation but as I see it, I was told I had PBC after presenting with symptons (itch mainly, fatigue vanished quite some time ago) and had a few repeat abnormal blood tests and then had a positive titre for AMAs (ANA negative).
I think if you are currently with what appear normal LFTs then that could possibly be why you have not been given urso as yet? Have you asked this question?
I get annoyed when I have to pay for the urso being in England because as I see it, my first late husband started work as soon as he left school and was on his 21st yr when he died suddenly. He was paying for medication to get by but he continued to work and now the National Insurance he paid in and all those taxes are of no use, same went for my late father who worked all his life and died aged 56. I too have worked and paid taxes and National Insurance and currently I have a bill here from the National Insurance advising me that I have a shortfall for the last financial tax yr (when I quit my job but never claimed unemployment or any other benefits as my husband now is also worked as he has since he left school, also serving 10yrs in the army)!
I expect if PBC is uncertain as junolee states you would have been advised to have a biopsy (I've not had one).
You didn't state the duration of your blood repeats and I would add here that they would probably be a quick indicator that all was not has it was before and it could be acted upon then?
Hi Skywalker: If you take a look at the PBC foundation site and the PBC foundation's compendium, there is loads of really good and understandable information about diagnosis and treatment.
My diagnosis was made on the basis of abnormal liver enzymes and a positive AMA. I had an ultrasound but that was to rule out other things that might explain the abnormal blood results (like gallstones).
The hospital docs don't seem to be in any hurry to request a biopsy, scans or any other tests as they are satisfied that I have PBC and that the Ursofalk will treat it. I don't know if Ursofalk is routinely prescribed if the enzyme/ liver tests are normal.
In Ireland, the waiting lists are even crazier than on the NHS - I waited 3 months + for a scan, about 4 months for a surgical consultant's appointment (where he ruled out gallstones and sent me on my way) and about 6 months for the consultant physician's appointment where they diagnosed PBC within about 5 minutes after looking at the blood results and asking a few stupid questions ( including the one that winds me up - ''how much do you drink?'').
They could have saved themselves a lot of time and me a lot of worry by looking at the blood results months ago and making the diagnosis in a phone appointment! Or telling my GP. Ahh well, as my granny would have said, these things are sent to try us!
Thankyou for all your support and input! I go into panic mode sometimes, I suffer with depression and can become very frustrated and cross.
After reading a post that Robert (from the PBCF) sent, I am much more at ease with the situation. I am a member of the pbcf and receive the bear facts, it was the last edition of the bear facts that set me off again, worrying I mean. On page 4 it suggests pbc is now being diagnosed in patients who are asymptomatic and with normal liver tests! Bearing in mind that I do itch and some days can struggle against a fatigue that's crippling! I feel drugged up and just need to lie down and fall asleep!
But, alas I am going to stop worrying and get on with my life, and just wait and see what happens! They are keeping an eye on my blood annually, so I guess something will show up one day, or maybe not, lol (fingers crossed)
take care all, I will still be popping in to see whats what xxx
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