Fibroscan and Urso...

[AdeleMalcolm]

Well folks just a small update from me. I went to the liver unit in King's and had my fibroscan which came out with a score of 10.4. Not great but I guess using the glass is half full approach it could have been so much worse. The doctor has put me on Urso (naturally) and said she'd get a few more blood tests to determine if that score is due to inflammation or whether a biopsy is needed. In the meantime I have an appointment in 3 months time to determine how the urso is impacting. At that time I'll also be getting a bone density scan (how many other things does PBC impact??). I've asked Kings for my blood test results as, like the majority of sufferers, I like to track these. Anyone else had problems getting a hold of someone there who can give you these? I'm in France just now so it has to be by telephone and that's just a major headache with every number I've been given diverting to the automated appointments line - seriously frustrating! Anyway, I'll keep trying and no doubt eventually I'll get a hold of someone who can provide me with the information. You can guarantee I'll get details from the hospital of who/where to contact by phone or email the next time. In the meantime I hope life is good for you all as far as it can be.

[Hidden]

Hello AdeleMalcolm.

It's apparently said that with PBC we can be deficient in fat soluble viatmins due to a compromised biliary system and one is Vitamin D. Not great if in the UK anyway as I am too with our lack of sun, especially in the North West (been just awful here for the last 2 months, overcast a lot of the time, rain and only 5 full days not together I can recall where we have had the sun all day). Vitamin D can impact on bone health. We are also supposed to be more at risk if we are women who are of a certain age and going through or have completed the menopause. I am now 52 and started the menopause a few years ago (fortunately it's quite void of certain symptons which is good).

Just a thought with you living in the UK though out of the country at the moment. Are you registered with a GP who has the EMIS system for booking appointments, etc as from April this year surgeries were supposed to have patient info from their records online which includes test results. Your GP tends to receive the results even if done at hospital and if so you might be able to check online if you registered for your blood results. I know mine were put on earlier this year.

Since diagnosis December 2010 I have found getting blood test results has been something of a feat at the best of times. Seems GPs and their admin staff just don't think it important enough! It is thought that we will just go in and take it as is if we do not hear anything from the surgery if needs be. At my last GP surgery no-one even bothered to get in touch with me, I had to get the results and then take it from there. The Practice Manager I took it up with asked me what I wanted the results for and what was I doing with them in print-out!!!

[AdeleMalcolm in reply to Hidden]

Hi peridot..

I did have a look on the EMIS system recently but it doesn't look like my home surgery has got their act together on it in relation to patient access. I will try again though just in case they're just behind the curve a little bit. I hadn't realised they were supposed to have that bit of kit installed on their systems by April.

I am fortunate that being in France at the moment Vit D is in ready supply - just not sure if I had a deficiency to start with and it's one I'll add to the list for when I see the Dr next time. I picked up on this site previously that CoQ10 was useful for boosting energy but my Dr said not to take it until they've got more of an idea how the Urso is working for me without anything interfering with results.

As far as my GP surgery is concerned I did get print-outs before - at a cost naturally! It was a nominal sum but if they sorted out the tech side of things on EMIS they'd not have as many requests (blocking telephone lines) and less counter top queries and they could get on with the numerous other more important (to them) things they have to do.

I hate admitting to being menopausal but it is what it is (too much an acknowledgment of my advancing years!). Luckily I have some friends in the same boat so we can all have a good moan about it together - this is one time when being in a hotter climate is not such a boon! I've a fan permanently situated beside me - my 'drip' as my hubby calls it as I cart it from living room to bedroom. Still rather that than rain and grey skies.

I'll keep all posted on how I progress with sorting out getting results! Stay well.

[Hidden in reply to AdeleMalcolm]

Hello AdeleMalcom.

I've never been charged for getting a print out of my blood results each time. I started asking for them early 2011 after the consultant wrote to me and mentioned Vitamin D and said mine was 'not bad' but 'a bit low'. I didn't understand and wanted a figure, rang his secretary who sent me all the bloods I had done since early 2010. From then I started to request a print-out. (My Vitamin D was on the line at the time by the way. No action was required and my next check after summer 2011 showed me to be perfectly normal.)

I believe if you wait awhile (say a few months) then the GP surgery will charge you for the print out.

I've posted this link on here that explains health records at our GP surgeries that should be online and the actual date they should have been.

england.nhs.uk/ourwork/pe/p...

[AdeleMalcolm in reply to Hidden]

Thanks Peridot. I'll have a look at that link. In the meantime I'm going to call my surgery on Tuesday - according to EMIS I have to request access to my records, just not sure if they'll do it, but at least I can ask and can quote something 'official' at them if necessary! Hope the weather is better there today to top you up! We're due some showers this afternoon and tomorrow. Adele

[Hidden in reply to AdeleMalcolm]

Hello once more before I go offline. You can actually register with EMIS online without speaking to your surgery. If you go to your GP surgery and click on the 'make an appointment' link or whatever yours says then there is an additional section to the left of the log in that states yo can register there. When I moved surgeries a few years ago I didn't speak to my surgery to register for EMIS, I did it this way.

[AdeleMalcolm in reply to Hidden]

Hi. I am registered but when I log on the only thing I can do is make an appointment. If I want my records I have to contact the surgery according to the notice on the online site for my practice. I'll let you know how I get on. Adele

[YummyBear]

Ring your Consultant's secretary and she should provide you with a copy of the blood results. My consultant's secretary is very helpful.

[AdeleMalcolm in reply to YummyBear]

Thanks YummyBear. Unfortunately when I tried that the number diverted to the automated appointments line each time. I'd been given the correct number but no joy. I'll give them a call this week but I'll try my own GP surgery too as Peridot suggests. Fingers crossed!

[YummyBear]

That is so annoying, everything seems to be automated these days. I find that some secretaries work part time, so maybe try towards end of week when letters have to be typed up (I know, I was once a med.sec). Alternatively, ask your GP to print out a copy of the bloods. The process is that your GP will receive every communication/report from your consultant to be scanned to your medical records.

[AdeleMalcolm]

Thanks YummyBear - I'll be talking to my surgery in a few days and hopefully they can give me them over the telephone otherwise your suggestion is a good one re timing of a call. I'll make sure that I get the means to follow up on results electronically as Peridot suggested - easier for the hospital, a (no doubt) very busy medical secretary and my GP practice....and of course me!!