How were you first diagnosed with HCV?

[CalvinHU]

Did you have any symptoms that triggered the diagnosis?

Was there a delay in diagnosis?

Please share your experience below and interact with others in the comments!

[Chefkarl]

I had had unprotected sex and was a little worried as I was feeling unwell etc so I went to an std clinic and two weeks later told I had hep c geno 1a. I spoke to the girl in question who got checked and cleared so left me wondering. I then worked it out to be from a tattoo I had had done but unable to prove they was the source I was left dealing with it myself.

[belintte in reply to Chefkarl]

Its very rare nowadays to get anything off a certified tattooist as they are well regulated and its their business so carn't afford bad press. Was your tattoo done within the past ten years by a certified health checked tattooist? Are they still around today? I am not doubting you but it is rare just like catching it of sex unless you have anal sex where blood may be involved or the lady is menstruating. Believe me I have looked well into this since being told I had it,have you shared razors or toothbrush with someone or maybe had a tussle where blood was involved, you have to remember it only takes a weeny small amount you may not even see. You don't have to deal with it alone now, try not to worry and put all your focus into getting treatment. Give me a shout if your feeling a bit crappy

[Chefkarl in reply to belintte]

Thank you . Hopefully I can get a Percibo in india for cheap compared to the uk

[belintte in reply to Chefkarl]

Are you in the UK? If so hang in there as you don't know the best meds for your viral load etc and there are so many different combinations, i have been where you are but glad I waited and they are putting people through quicker now so you wont have to wait as long as me, they are going in 6month cycles, which hospital are you under? Take care and stay strong

[Rachida in reply to Chefkarl]

How long did it take to know your genontype and can they do it a sexual health clinic

[belintte]

I was diagnosed when I had volunteered to do a H.I.V clinical trial. I don't have H.I.V but when I went to Guys and St Thomas's for my health scan first they found a cyst the size of a grapefruit on my ovary, so I went away and got that sorted and returned for the trial and a blood screening showed that I had had Hep C, they didn't seem that interested in explaining what it was and I left there thinking I was going to die. I didn't know how I had contracted it, but I had, had a heart operation when I was five years of age and given a blood transfusion in 1971. First I had to tell my partner who luckily took it well and was tested and was negative, then I had to find a heptologist and find out what I was dealing with this was in 2000, I had always felt tired and sluggish but that had been one of the signs that led to my heart op so I thought it was something I had to deal with it and didn't really think about it. I was diagnosed at Kings hospital as being Genotype 1 A and I am now into my fifth week of medication, yep it had taken a while to get but I guess I had to wait my turn and I'm currently on Zepatier and Ribavirin the medication lasts 16 weeks and the Ribavirin does mess with my sleep and makes me more rattier than usual and I shower twice a day as the medication makes a horrible smell come through the pores of my skin, and my pee really stinks ewwww but it will all be worth it if it clears this Hep C as I hate thinking it is lurking inside me. And this is the unbelievable bit two weeks after I started on my meds I had a blood test which I have regularly yesterday I was shown what had happened in just those first two weeks (which were hellish)I had started off with a viral load of 8million+ per lil bit of blood and it had gone right down to....wait for it 175 yep 175 unbelievable, so heavens knows what I'm at now but the meds are working the first two weeks as I said were hellish i'm so glad I did not throw in the towel, and carn't wait for my next appointment in 3 weeks to see where I'm at then it may be strange but it's quite exciting and ive lost weight. I had to fight to get the meds but it was well worth it, I was all ready to go India where you can get the drugs cheaper, glad I didn't. So if your put on this combination don't give up in those first two weeks I am still having sleep problems but its worth it if it clears it. Good luck everyone and I will get back to you after my next appointment. The one thing is if you catch a cold or something before you take meds that your nurse does not know you are already taking check with the nurse first. I have emphysema, degenerative back disease and BPD on top of this and if I can do it anyone can. Big thanks to my nurse who is always available if I have questions or are feeling a bit crappy, her name is Sara and works at Lewisham Hospital and is brilliant and down to earth. X

[Londongal]

Hi everyone, I am coming up to 65 years of age and I was diagnosed about 20 years ago. I was just feeling really fatigued, unwell in general and couldn't walk very far without a terrible deep pain in my shins, and muscle pain. Doctor told me he thought I had M.E. As there was no test to confirm diagnosis, and nothing that could be done about it, I just struggled on. To complicate things I was being treated for Endometriosis, and a lot of my symptoms were put down to that, especially fatigue. After a couple of years when I was almost crying with the fatigue, generally getting worse, they ran a few more tests and that is when they found out I had Hep C. As far as I can work it out I've had it for about 38 years if I picked it up where I think I did. I have mild Hep C and F2 fibrosis.

[belintte in reply to Londongal]

Hi Khalisse,

I am 50 diagnosed 17 yrs ago and had it for 40 yrs is what we worked out, the fatigue is the worse in all this time even though during this time ive had cancer and now have emphysema and degenerative spine disease. I hope this treatment clears it I have waited quite a while for it are you on treatment yet?

Take Care B x

[Londongal in reply to belintte]

Hi Belintte,

I wasn't offered treatment when I was first diagnosed as I had mild Hep C. The hospital decided to just monitor me. That involved appointment every 3 to 6 months as well as liver scan once, sometimes twice a year. I also have had 2 liver Biopsies . On the last biopsie , eight years or so ago, my liver seemed to be getting worse. I was offered Peginterferon & Ribovarin, didn't fancy that much things I'd heard about it, so declined and decided to wait for better treatments which my consultant said were on the way. Fast forward a couple of years and treatments were being fast tracked through. Unfortunately, I now wasn't ill enough to get them. I felt so sorry for my consultant, it wasnt his fault that every six months he had to tell me again, that treatment wasnt being given on the N.H.S then when they were, only to people at deaths door. Then last Feb on my usual apptment he told me that it was being approved for more Hep C patients. Anyway, Aug 23rd 2016 I was given Harvoni, it's been a year. I have an appointment in Nov to see if I'm still free of the virus.

I wish you well with your treatment. One piece of advise I would give you while on treatment, please drink enough water, I found Harvoni very dehydrating.

Please feel free to email me if you have any questions during your treatment.

All the best

K.x

[Sillysausage234]

Hi Calvin ,I was told 15 yrs ago during op for broken leg, having treatment epclusa now,source possibly tattoo's 30yrs ago .

[SimonHM]

I had been undergoing months of investigation into the cause of rectal bleeding, which was eventually diagnosed as Ulcerative Colitis. On the 30th June 2015, I was having blood tests requested by the Gastroenterology team. As I was giving blood, I decided to go to the Sexual Health Clinic to have my regular quarterly sexual health screening. I was called back on the 2nd July 2015 to be informed that I was diagnosed HIV+. And as I tested positive they checked for Hepatitis C which came back positive. As I had regular sexual health checks they looked back at my previous blood tests, and February 2015 negative for HIV but positive for Hepatitis C. November 2014 negative on both. So I had contracted Hepatitis between November 2014 & February 2015. This diagnosis explained why I had been suffering from chronic fatigue for months starting winter 2014. What concerns me is that they didn't test for Hepatitis C until I had been diagnosed as HIV Positive. If they had tested for Hepatitis C when I was having my regular screening. In January 2015 I was given an Emergency Referal to the Colonrectal team to investigate why I was having rectal bleeding. And to check if I had signs of Cancer. Earlier Hepatitis C checks would have possibly made my mental and physical wellbeing so much better, especially when I was worrying that I may have Rectal Cancer.

[belintte in reply to SimonHM]

Hi there Simon,

Sorry to hear what you went through to get diagnosis you would of thought they had done the blood tests before giving you an emergency referral for cancer, I had cancer so know the head trauma that causes then to find out it was wrong you must of been raging id of been! So are you getting treated for Hep C and H.I.V together I hear that interferon is a bit of a twat the meds I'm on are bad enough but will be off them and clear by Christmas fingers crossed. So what's your H.I.V status now? Keep in touch and let me know how you go. So sorry they put you through all that torture.

Stay safe B x

[SimonHM in reply to belintte]

Thank you, I had an 8-week treatment of Havroni last summer. This cleared the HCV within 2 weeks. I continued the whole treatment and now a year later am still completely Hep C free. Thanks for your kind words.

[Tess74]

I found out I had hep c from routine blood tests, the diagnosis was completely out of the blue, although from as young as 7 I had frequent blood tests and the conclusion back then was I was carrying the glandular fever virus, all through adulthood my LFTs were always very high and one doctor tested me for hep b in 1995 but it was negative, in 2014 I got the news that I had hep c via a phone call from my doctors receptionist! Its my belief that I got hep c from being treated for jaundice at birth in 1972 as I don't have tattoos and I've never injected drugs. My main worry was if I'd passed it onto my 3 children, thankfully they all tested negative for the virus....phew!!!!

[Dandelion_1]

I was first diagnosed with Hep C after a general blood test came back with high results on the liver function. I had the blood test as I had just joined a new GP practice, they were waiting for my notes to be received and because I was feeling unwell, very tired and was under some strain due to work circurcumstances. They repeated the blood tests but didn't specify why. I returned a couple of weeks later for an unrelated appointment and was told then that I had Hepatitis C. I didn't know anything about Hep C so asked what it was. I can remember that the GP said she didn't know much about it but that it could lead to liver cancer. She printed off something from the internet while I sat there shocked. I asked what the treatment was, expecting a course of antibiotics or something to be taken 3 times a day and that would be that! The GP didn't know and said she would be referring me to a consultant and that was the end of the appointment. In the five months between the diagnosis and the consultant's appointment, I did my own research and dealt with the shock and anxiety of it all pretty much alone. I worked out that I could have had the virus for approx 40 years, undiagnosed. Despite many reports to GPs about unexplained excessive fatigue, joint pains, etc, I was not tested between 1989 (when the test was available) and 2010 (year of diagnosis).

[cyclegal]

I was diagnosed during a routine health screening. By then i'd had it over 20 years and i had been feeling very tired and had noticed that my tolerance to alcohol was diminishing as the years went by

[BlondMonkey]

Nose Bleeds!!!! started out of the blue, getting worse daily, some days up to 7,8,9 bleeds, lasting half hour up to 2 hours, after upteen GP visits trying creams, sprays, nothing worked, then blood tests..result Chronic Hep C, LFT & biopsy= i have liver damage, weight loss lost 4mths has been drastic, nose bleeds continue which im totally stressed about not just because its embarassing but i panic...my blood is infectious..1 pin prick is all thats needed for me to contaminate someone innocent, im paranoid and full of dread and 'what if's'

[Rachida]

I was diagnosed 2days ago through work screening including hep’b HIV and hep’c they all come back clear except hep c I don’t have no symptoms I lead an active life I was shocked

[Rachida]

Hi Calvin I was diagnosed when screening for health prior my new job I was in a total shock since I have no symptoms I have not seen any liver specialist except my go who did a referral and i don’t know how long to wait for treatments