Home Forums Main Forum Patient Stories Viral Load Results labs in the UK

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  • #24629
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    So GP who kindly ordered 2 weeks and 4 weeks tests and who I counted onbto have 8 weeks tests done has gone , instead another GP phoned me and advised me she CAN NOT order 8 weeks test as it is not within her remit. My blood boils , now I am left with one week notice to organise test. Can I recheck please what private labs have UK wide sites that can draw blood as internet search is not answering it properly to me ?
    Thank you in advance


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

    #24630
    Donna
    • Topics: 1
    • Replies: 70
    • Total: 71
    • Recovery Champion
    • ★★★★
    @donna

    Hope you can sort this out countless. In my case my GP also only did 2 week, 4 week and 12 week blood tests whilst I was on medication. So I’m presuming that must be their remit for patients taking generic medications. Xx

    #24659
    wilko johnson
    • Topics: 5
    • Replies: 47
    • Total: 52
    • Recovery Champion
    • ★★★★
    @wilko-johnson

    Hi Countless, Try going back to your GP and see if they will do the test for you as a private patient, they are allowed to do this, and if they will it will probably be less expensive than going elsewhere. The cost to the surgery is about £70 and they may well only charge this amount.


    gt3 started sof dac jan 2016 now 48 wks svr. not the real wilko johnson just have the same real name. shropshire uk

    #24675
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    My GP has sent me and consultant a letter stating she is not going to be involved in monitoring as it is beyond her expertise and responsibility of a consultant. To be fair I never organised for a proper letter from a consultant being sent to her asking for monitoring and she had only my word for what was needed and when. A week ago I been seen by hepatologist on the NHS so I given them a call and as I had to travel today for an ultrasound anyway asked for viral load test to be ordered , they promised the form will wait for me at reception. Fingers crossed. I shall ask hepatology unit to write to my GP , may be it will result in her being more cooperative for the future. I suppose I shall need/want apart from today’s 8 week test an EOT , 3 months, 6 months, 12 months and 24 months tests. That is if there is no new information – I am quite worried about today’s ultrasound given my fibroscan, chances of previously existing undiagnosed HCCs developing fast when on sof+led and me feeling more tired and despondent now than I was before diagnosis/at the beginning of treatment. .
    Thank you wilko , I shall keep that in mind.


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

    #24682
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    My GP has sent me and consultant a letter stating she is not going to be involved in monitoring as it is beyond her expertise and responsibility of a consultant

    I confess that the response of many doctors to HepC generics makes me despair for the state of medicine. FFS it’s not that hard and there is even a very simple instruction sheet! http://fixhepc.com/forum/forum-gp-cheat-sheet.html


    YMMV

    #24688
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    I am not sure it is anything to do with generics. My guess would be they are very overworked so they try to get rid of anything they don’t absolutely have to do. Do you know they have 10 minutes for consultation here ? All including notes , greeting etc. I work in NHS in other area and can attest to the whole system being in shambles. How long do GPs have in Australia for consultation?
    On another note – they said my liver looked perfectly smooth and healthy on the ultrasound. I am obviously very happy. I can not understand how it reconciles with my fibroscan though as surely there must be changes visible on ultrasound with a score like that ? Could you please advise me on possible reasons for this discrepancy ? I shall try to get in touch with hepatologist but I envisage it being a serious challenge.


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

    #24700
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    Hello countless,

    Fortunately the medications don’t really require much monitoring.

    Liver functions at 4 weeks should look good and provide reassurance, same at EOT and SVR4 and then just a viral load at SVR12.

    The monitoring has essentially zero impact on treatment outcome, and is simply not done in many countries using DAAs.


    YMMV

    #24702
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    I see. I was still “detected” at 4 weeks so treatment extending was on the cards. Can I ask you what is your opinion on treatment extension in my case ?


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

    #24703
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    Hello countless,

    Your <12 detected is approximately the same as <25 undetected in the US because the ultimate test sensitivity is roughly 1/2 the quantification level.

    In your favour - ?female, 1b, low viral load, ?treatment naive

    Not in your favour borderline cirrhosis with 12.5kPa on fibroscan

    In and of itself a <12 detected at 4 weeks would not worry me that much. The chances are you will clear with 12 weeks.

    It has/will always be the case that longer treatment gives slightly better results but we are talking and extra 100% cost chasing the last ~5% cure.

    So in a nutshell you could argue either way. With your 12.5kPa we certainly want to cure you sooner, rather than later. On that note - surely you should have qualified for NHS Harvoni?


    YMMV

    #24704
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    I would have qualified.
    I did not want to wait until I had appointment with NHS consultant , referral for tests , wait again , have tests done , wait again and so on. Besides I had no idea I could have so bad fibroscan and assumed I will not have DAAs option on the NHS. Yes to female and treatment naive.
    I started treatment a month after diagnosis and I thank you for it. My thanks are as well to an unknown doctor who my occupational therapist (one who diagnosed me) spoken to when she given a call to hepatology team she was referring me to – they mentioned redemption trials as an option to her. We are talking about one of biggest London hospitals. Thanks to that occu health consultant who went an extra mile and made that phone call. And to hepc trust website as they have a link to your site.
    I suppose I will chase the additional 5% as I am a healthcare worker and would hate to be in those 5% , have further year off work on recurring and potential for some further major career damage.


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

    #24706
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    Hi countless,

    Your 12 weeks odds are north of 90% but 24 week odds are north of 95%.


    YMMV

    #24708
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    I came across some discussion in which it said that 2 months of additional treatment results in very similar outcomes as three so I may go for 20 weeks instead of 24 .. or even 18..


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

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