Haha....sorry Canuck I didn't even consider if I'd grossed anyone out talking about white stools lol....anything goes here i guess .....no those tests are not new, I added the missing bits from the other page you looked at, all these results taken in October when I was last tested. Feeling very nauseous today much more than usual ...makes me a little anxious but seeing GP tomorrow so hopefully she can feed all back to consultant prior to their meeting next week.

i too think they are on my side and don't believe they would try offer me anything other than Epclusa as that's what he has hinted I wait on as it is most likely cure....we will see...fingers toes and everything crossed 

thanks C , you are so clever, with the bloods knowledge.... I find trawling through abbreviations and definitions brain taxing and I get even more anxious .

Good night and bless you bud xxxx

No, like I said, I don't think they are going to do that to you at the last minute. I think it IS going your way, I think the worst that will happen is that it will just not feel like its happening soon enough for you.

I think they ARE on your side, although it may not always feel that way.

You've actually had some pretty good thorough testing!

The new bloods you have added? ... again, it's hard over the miles, to suss what your labs uses for "ref ranges" (lots of my labs "ref ranges" are dif from those used over there), but from what I can guess (I tried to look yours up and/or convert them), it seems your ferritin is only a twitch or so on the high side?, and your AFP is OK I believe.

My ferritin was up for a while (who knows for how long prior to treatment!) but once noticed they kept monitoring it, before and after tretament I could see that it just unceremoniously returned to a nice normal level post-treatment all by itself! Same for my AFP that was a twitch over, it just fixed itself after treatment.

Everything is better without HCV on it. I am sure things are going to start going all your way now, and you will get to start treatment pretty soon, then, more to look forward to once you have divested yourslef of this soul-sucking virus!! You WILL regain a healthy balance again, you'll see. Hang in there.  C.

Warning : graphics coming for the easily grossed out - I know too well that shock of experiencing brilliantly glistening, glittery, white almost fluorescent chalk white stools!! Never, do I ever wish being as ill as i felt back then, on anyone - not on my worst enemy! Glad that was so, so very many decades ago for me now - with a wee bit of age/distance on my side now, I am beginning to forget all about it! hee hee

You're story is well written Canuck. Im sad that you had to go through all that but happy you did...sounds like it was a scary time for you. I know that feeling ...being desperate to get chosen for something everybody else is desperate for...im a great team player but if I have to win the race I would do it biting and kicking if it meant life or death. to be honest, I have had issues of trust with this from the beginning. The way they talk with limited eye contact ....during limited time...not once hàs he ever tried to explain what is going to happen to me other than I would be with him for two years and he would cure me just didn't know when. 

He was careful what he told me the first time I met him. The second time We met , I've only met him twice, i was talking in his language, knew the drug combinations best for my genotype and knew that I would not be the sort to cope on interferon and rib ......knew what I wanted and asked about buyers club etc, I knew the law and customs on buying in, had spoken to Greg Jeffrey's, regular contact with Hep c trust and had written to MP and parliament about my disgust at how people are being denied access to treatment or made to wait, because if rationing.........when I was diagnosed all I was told is not to worry because treatments are good now and it's not the disease it was years ago. Nobody said I was walking into a minefield of uncertainty And anxiety....even getting GPs to arrange for my daughter's and partner to be tested was a battle of the wills....I won though  so, my consultant told me he was impressed but that I was to STOP obsessing because THAT is HIS job. Clearly NOT..... so I'm back on my case indefinitely now, I trust no one to get me my treatment other than me...pushing and lingering at every opportunity. He did talk about waiting for a new drug that had greater chance of cure and that my score said I could afford to wait, he was right, but now things have got so bad this couldn't have arrived in the U.K. at a better time for me.

 as far as all other bloods, prior to diagnosis I was tested for, ; diabetes, thyroids, clotting and blood count(they were worried HRT had caused swollen hand and broken cappiliaries ) lupids, kidney function , liver function tests (always been quite routine for me as always had concerns about my liver after I beat Hep b amd my liver collapsed, spent 9 days in the infectious disease ward yellow as a banana and poo White like chalk, ankles severely swollen. ) so they always mentioned enzymes elevated but no hep B. NOBODY ever thought to csreen me for hep C? Even though guidelines in 1992 put me at number 1 and 2 of the 10 most people most likely needing to be screened for hep c.......

i believe another doctor said that my kidney function was lovely ....so as far as I know all bloods have been good. I'm a little shocked and in disbelief after what my liver been through in 1982 and since, that I got a Fs 6.9 and no damage?  But it sure is affecting me in lots of other nasty ways.

surely if I am this bad now and with all other things considered , and its the start of a new financial year, and Epclusa is being given specifically to G3 and 2s ....they won't turn me down next week?  I would make noise to the press if they did....BIG time xx

-- Edited by Jaggles on Tuesday 28th of February 2017 04:08:54 AM

-- Edited by Jaggles on Tuesday 28th of February 2017 08:23:19 AM

I've always had trust and mis-trust issues!

After their chat (with each other) about you!! ... don't let them come back with an offer of quicker tretament with a harder regime than epclusa. Should they say .... well if you want to start tretament tomorrow, we can give you ____ instead of epclusa!

They probably won't do that to you, they do seem like they have their "brains on" and intend to get you on the epclusa train, but just thought I should mention this, in case they bring up "alternate" drugs at the last minute.

Even once I was standing in the very threshold of the correct door (actually, I was already pacing about inside the door!), I was still "quized" (one more time) to see if I was game or desperate enough to take a standing offer of sofa/riba, I think they had indeed already decided I was a "perfect subject for their sof/vel/vox trial" and already had me pegged for the trial, but STILL they double-checked ... that if I said yes to sofa/riba, it would have only freed up my seat for another GT3 to take my seat in the trial. At that point, they were still keeping everyone completely in the dark about who got accepted in the trial, or not, too few seats, so many GT3's, final decision was by computer, not man! (I am sure there would have been hundreds of deserving pts., and only 5 seats at my facility). I had a feeling (hedging my bets) that I was indeed their "type" (desirable trial material), and adamently made clear I thought I would NEVER ever be able to get through sof/riba, could not, would not - they dropped that line of query like a hot potatoe and soon I was ushered on to the next step, still keeping me in the dark. I found this part hard to take as well. Near, yet potentially, so far! The unknowns and waiting kills ya!

Others I am sure can be calm about it, see through the smoke and be able to deduce that things are already in the works and will work out, and wait patiently for the inevitable, but not me, I was teeth nashing it all the way until i heard those words for myself - "your in the trial"! I would not take comfort in noticing that I had done evreything conceivable on earth to position myself strategically to win, and chose to ignore the signs (i could feel the chnage of tide around my ankles), and kept staring straight ahead!! It WAS exhausting. When you get your news, you too will get some relief from this stress.

I think I am sniffing all the right things in the wind at your hep docs door tho. The wheels are indeed turning. 

I too think you are on a roll!  C.

PS - labs - ferritin was cut off - probably normal, but what was it? - just curious. Thnaks for clarifying bili. Your lab does use slightly dif "ref. ranges" for some things, this is sometimes seen from lab to lab, country to country - go by what ranges THEY use - your GGT IS within "their" normal range (my lab in Canada uses a more restricted range). Have you had a chol/lipids "panel" done in the last couple years? Everything in your CBC normal? Blood sugars normal? You renal function appears great!

Thanks Tig, as always your wise words are so true.....I got sick of being unheard and treated like a number, not an individual case . It affects us all differently but i know when things are getting really bad. Knowledge gained from this site helped me , not the doctors and nurses....they just go through the motions of their job and I think they do get complacent ......I started making calls  at 7.30 am today and by 3.50 pm I had a better outcome than going to work today...

thanks for the links posted on jane n Phil s thread....very interesting  xx

That's wonderful news! You keep on them and keep hitting them with valid information and facts. People can argue with information, but they don't have much recourse when you hit them with FACT. I know from experience that discussing this with someone that gets it, is so important. Once you can get the attention of the medical professionals on your case and present them with YOUR situation and back it up factually, you get results. Another thing with all of this, is once you know things are understood, and your case is being handled personally, instead of being grouped together with everyone else seeking treatment, your mental state will improve because you have one less thing to worry about. Being ignored causes fear and we don't need that along with everything else. Good job, keep it up. Be sure to look at the post I left over on Jane and Phil's thread. There are some good links regarding the NHS and NICE.

Well...little birdy know it all...I would never call you that  but guru...friend and allie I would .....you were right ...being frightened, pissed off and sick did propel me harder today. I called the Hep nurse department and as my Hep nurse was on holiday...I got to talk to a nurse I did not know. She listened to my side of the story and we had a long chat. She agreed hat I must keep going to the GP but assured me she would talk to my consultant today and call me back...provided  promise to make a GP appointment. I agreed with and empathised with all she said but I also let her know that I have been accessing expert advice from the forum and brought her attention to my genotyp, my current state of pain and mental decline And the lack of support or monitoring that I have had since this all begun. Great news is,.....she did call me back just now. She said they are going to put me forward for treatment at a meeting next week. we will know themoutcome next week but she gave me a talk about the possibility of being called in for premtreatment tests and counselling etc. She also said that their direction for treatment regimes change all the time but new drugs have been approved for use . It is up to panel next week so fingers crossed...toes crossed everything crossed. And double WHOOPEE I managed to get a GP appointment for Thursday.....I'm on a roll 

I want to get excited but afraid to just yet incase it doesn't get approved...but I have made so much noise in so many departments I can't see how they can Ignore me... I could have kissed her though....just hearing those words being said by her......'meeting next week to discuss your case and treatment'.......... so we will see. I am starting to finally feel heard....and today you played a big part in that Canuck!!!! Thank you so much BIG VIRTUAL HUGS XXXX

-- Edited by Jaggles on Monday 27th of February 2017 12:28:05 PM

Ask for a cancellation appoint. for the GP too, and/or offer to come in and wait in chairs at the end of the GP's work day, just on the slim chnace he might be able to fit you in. Just keep going around in the circles they force you to, that is all one can do, but you can also press the edges of the box in any way you think might work - you WILL get there!, one way or t'other, would just be awful nice to know which way and when! They have rules, you do not, keep trying. Make arrangements at work to be able to drop your work one day, without notice, in the slimmest chnace you do egt a cancellation appointment. 

BEING FRIGHTENED, PISSED, FRUSTRATED AND SICK HAS IT'S BENEFITS, IT PROPELLS YOU HARDER TO THE GOAL (THAT'S HOW IT WAS FOR ME ANYWAY) - i THINK YOU ALREADY "HAVE IT MADE" AND ARE "IN THE BAG", BET IT MAY TURN OUT BEING A SHORTER WAIT THAN YOU MIGHT THINK - HOPE SO ANYWAY.

Try asking by phone (OR in person, when you actually DO get to see a human!), for them to PLEASE explain to you ... "what is the safest following-protocol for me, BEING THAT I AM A GT3!!, known for faster progression!!!, as far as having bloods every 3 months, and repeat fibroscans every 6 months and repeat U/S's every 6 months while I am not being treated?"!!!! (note to them that you haven't had bloods for -X- months now, and that it has been -X- months since your last U/S and -X- months since your last fibroscan!). Relay that you would be ever so appreciative and grateful and maybe just a little bit reassurred if they would just give you the (gall-danged) requisitions for same, so you can plan ahead and prepare to have them completed on time!! Tell them you heard it from some little birdy know-it-all, that labs every 3 months, and repeat fibroscans and U/S's every 6 months are recommended and a very good idea for GT3's when they are kept waiting.  

Explain to hep nurse, in the effort to keep things current and to expidite things, please can't you just give me, fax me (or I could come and pick up from reception) the required blood/ultrasound and fibroscan reqs. (via the consultant/hep doc), as my appointment with GP will not be until .....? 

I think you have already done almost ALL the prep you can, you've done a good job with it, you are already WELL positioned and that is a major  ... there came a point (in my endeavour) that I WAS already "in the works", but nothing I could do would hurry it, from that point on, no matter how madly my duck feet were paddling under the water.

Remain in their crosshairs, make them like you and want to help you, keep your required labs/tests (if and as required) up to date (as is possible), do what you can and just wait, while making sure any outstanding i's are dotted, t's crossed. Knuckle for another attmept with the GP, just to re-iterate, and see what you get, ask her to please pass your physical chnages/her documentation of your condition on to the hep doc ASAP, that you wish he is kept fully informed please. 

That's all I can think of. Hang in there. C.

Great news about Jane n phill....it gives me hope......I am attaching the report , well, part of it...for you Canuck n Tig, although I don't have have any more recent results, I have kicked off today about what is being done...more about what isn't!! I wrote to Quality Care commission again about the dept dealing with my case.

my fibroscan was done early Nov 2016

ive called Hep nurse today and they gonna call me later.  going round in circles really as they want me to go to my GP for help with all the pain and lack of sleep and mental decline....I know the doctor will only say what she did in January...but will give anything a go. I've called in sick today so will try and use it wisely and keep,pushing for some contact or support and answers. The Hep nurse said that I am on the list and she is meeting with my consultant today and will mention our conversation . I have asked for more tests and scans. She said treatment changes are being made in March so although she cannot guarantee when I get it am on the list and she will call me back this afternoon after she has spoken with him, provided I make that appointment with my GP.   Round and round I go. It will take 3 weeks to get an appointment with GP and right now it is permanently engaged....grrrhhhhh

-- Edited by Jaggles on Monday 27th of February 2017 04:40:32 AM

Hey Jaggles (cont'd),

NEWS FLASH! (further to my post below) .... get a load of the post from "Jane-n-phil" over in "Hi new members here".  C.

Hi again Jaggles,

I too was wanting to suss your labs last night.

Some of your history is spread now over posts here and there. But from what I can remember without searching for it in differing threads, I am guessing your fibroscan was  _______ (how long ago)??

You posted your labs from Aug 2016, but what was the date of your fibroscan again?

I would ask for another, at least before it has been 6 month since your last, to see if your fibroscan kpa number is higher. Another ultrasound as well, again within at least 6 months, would be nice - I would want both if I could get them, and regular repeat bloods, while you are waiting.

Regarding this "waiting" business, it is sad monetary nonsense - we all deserve prompt treatment, like Tig points out being GT3 is an automatic "radar on", we can sometimes progress faster in fibrosis than other GT's, and we may have dif. tendencies, such as fatty livers as well.

It IS a good thing your liver hardness is only being shown as 6.9 kPa's, for you, and your health, but as far as presenting yourself as a pt who should be more urgently treated sooner, than others, your GT3 status alone, your liver hardness, measureable changes in your labs/imaging count best. But do not hesitate to convey/articulate your verbalizations in the subjective "worsening" in how you are feeling. It all should count, but some things may count more than others. People should be treated promptly, ASAP, ideally before their fibrosis is increasing, and before symptoms/discomforts increase.  

It takes practice to be a squeaky wheel, use alternating tactics that you think might work, but do make sure you are armed with the best/most recent tests/labs that may help propel you past the obstacle doors.

I do not believe I have heard of anyone getting epclusa in the UK yet (but I could be wrong on that tho), that may still really be your biggest obstacle, access, not so much who ahead of you may be "sicker". In my book tho, GT3's have some priority, especially ones with higher or increasing Fscores.

Regardless, keep presenting yourself, keep in phone contact, get put on the hep docs cancellation appointment list (as Observer suggested), strive to remain first and foremost in their minds, and be "ready" for treatment with current labs, current fibroscans/imaging and defined current conditions.

Back to your Aug labs. Good Tig put that lab link in there for you - it is one of the ones I often refer to as well. But you will find others.

Please do me a favour, look up your lab paper again for your bili (I hope you have the "actual" lab paper there), not just a handwritten note they gave you - your lab paper should show you the "normal ref. range" as well as your "result", and it will show them in the particular "unit of measure" your lab uses.

i.e. (Total) bilirubin may be shown in either "umol/L" or "mg/dL".

(Conjugated or Direct) bilirubin  can use the same measurements as well.

If your lab happens to using umol/L, and if it was a (Total) bilirubin you wrote down here, and that result was less than 26 umol/L, then that is still within limits from my reading. (I'd appreciate your confirmation on this - that it was "Total" and what unit of measure did they use - does it say "umol/L"?)

Unfortunately from one lab to another, from one country to another, you can find them using some dif units of measures and some dif ranges variations too.

As Tig said, an elevated ALT/AST just confirms the kind of result we can expect to be seeing when having HCV.

Neither is it surprising to see an elevated GGT. If using 36 U/L as the high end of the range, then yours, at 55 would be elevated.

Try for an earlier hep doc appoint. by being on his cancellation waitlist as Observer suggested, when you do get to see him (if that ends up being as long away as Jul?) be sure to ask him in Jul, if and when he thinks epclusa IS going to be available to you, but I would also be asking and sleuthing around myself, over there in the UK, to find out if GT3's or anyone over there is routinely getting epclusa yet.

Also, keep in mind the dates of your last bloods and dates of your last fibroscan and U/S. It is not outlandish for people with HCV to be followed every 3 months for routine repeat bloods, and especially for GT 3's having repeat fibroscans and U/S's every 6 months. BEFORE you get to the 6 months, be asking your hep office for requisitions so you can have a repeat fibroscan and U/S at 6 months, even if you have to do so (by phone) to request these tests (via his staff) in advance of your Jul appoint, if Jul means you are beyond 6 months. I do not think any of this is out of line, not the routine following of bloods every 3 months, nor repeat fibroscans/U/S's every 6 months during your wait. Nor is it unreasonable to ask for an earlier "cancellation" appointment to convey your unwellness to him (sooner than later).

Hang in there. C.

Hello! Sorry it has taken me so long to reply, it has been a busy time for me. I wanted to be sure to address it correctly. 

The thing that jumps out is your fibroscan score of 6.9, that's excellent! You are presenting the elevated numbers that are common in Hep C. Your enzymes are high and your Bilirubin is quite elevated. The ALT shows the predictable hepatic inflammation processes are hard at work. When you see these elevations and viral load spikes, it's a reminder that the disease is progressing, as it always does. It ebbs and flows as do these numbers. 

I'm hopeful that you'll get this treatment started and get these numbers turned around in the right direction. The sooner the better, in my opinion, is the best course of action. GT3 tends to present a faster road to advanced fibrosis, so keeping a good eye on the fibrosis stage is important. I don't know how the NHS responds to constant annoyance, but I recommend being one. The squeaky wheel gets the grease!

Here's some info on labs:

Lab Values

hi Tig, my tests have lots of results but here are some you asked for months ago ...took me ages to get then brain fog went and lost them.....found now 

Alt 190

Ast 115

GGT 55

tot billirubin 6          albumin 42          globulin 35.  Tot protein 76

Fibroscan 6.9 

geno 3 diagnosed August 2016

1982 HBV believed to have contracted c at same time 

HBV resolved 

im now 53 

are there any I may have missed important to identifying how things look? How do things look? 

I feel as though it's progressing quite rapidly now, lots going on with joint / bones pain and insomnia fatigue and sporadic rage, esoecially in the car lol....still waiting for epclusa from NHS

hope you are ok too....always helping us lot xx