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Post Info TOPIC: Newly Diagnosed and just cant stop thinking about it.


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RE: Newly Diagnosed and just cant stop thinking about it.
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Thanks for the info, Canuck. My Hep B immunity is >9.9 it has been awhile since I was immunized. Needed it for work. I will look into the other suggestions you had. As far as how I am feeling.....awful, strange, and so many other things. I go to the store and look at people and think oh how nice to be normal...and that I am the only person who this is affecting, which I know is not true but is how my brain is working right now. I am trying to wrap my brain around this and know that this is gonna get better. Enough of me....for now... thanks for asking. T.

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"49, F, Dx 04/14/2017, GT 1a, VL 288000 (Log 5.46), pre-treatment ALT was 78, AST 48. Fibroscan, Fscore 0, kPA 2.8. SOT 06/20/2017-Harvoni x8weeks.



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Hey Tigerlily, 

That's GREAT you found the hepB immunity lab! How did it read, what did it say exactly, did it say sometimes like "over 10"?

Do you recall when you received hep A/B immunization, or influenza or pneumococal shots? The "June" doc "might" still test you for hepA/B immunity levels, or, maybe not (now) - it will just depend - so, still, when you see June doc (good you will go armed with your B results in hand) then you can discuss all, and/or what other immunization he may or may not want you to have. But family docs can also review, test for and recommend immunizations as well though.

Waiting for your June appointment is hard. To make the best of the wait, trying to get as much as you can get done, and out of the way, will only help pave the way more quickly and help you in the end. You can pursue asking for an abdominal ultrasaound and a fibroscan now (if you haven't had these), just through your family doc - he "might" just order those for you, and then they will be done all the sooner, rather waiting for your June doc to order them. That "might" work out, as a speedier possiblity.

The Fscore, F0,F1,F2,F3, or F4 - derived from having a fibroscan - a measurement of the firmness of your liver - is good info, in the assessment of you. As is the info from an abdominal ultrasound valuable, in the assessment of you. This is where you are at right now - the "assessment" stage, treatment start is dependant on the assessments, so the sooner assessment is finished the closer you are to treatment. Knowing your GT and sub-type of course is also what your treatment will based on. So, lots of things you can keep trying to do, and these attempts might help fill in some of this wait time.

How are you feeling?, physically or otherwise. Are you doing OK? C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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I did just that Observer. Thanks for the encouragement and support.

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"49, F, Dx 04/14/2017, GT 1a, VL 288000 (Log 5.46), pre-treatment ALT was 78, AST 48. Fibroscan, Fscore 0, kPA 2.8. SOT 06/20/2017-Harvoni x8weeks.



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Welcome Tigerlily,

As Jimmy said, we ALL know that awful feeling of finding out.

I hope you can get on treatment asap, you will feel so much better without that nasty dragon dragging you down.

I suggest phoning the receptionist of the specialist and asking her to please put you on a cancelation list, just in case someone cancels. 

It really is the best time ever to have this diagnosis. The treatments are amazing.

           

A

 



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

3 years...post tx... successful dragon slayer 



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Looked up labs from last year and I have Hep B immunity. So that's one thing going for me. 

Thanks for all the other welcomes I have received. It surely makes me feel good knowing that NO I am not the only one who is going through this. 

And Tig56, Texas does have the BEST BBQ!!



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"49, F, Dx 04/14/2017, GT 1a, VL 288000 (Log 5.46), pre-treatment ALT was 78, AST 48. Fibroscan, Fscore 0, kPA 2.8. SOT 06/20/2017-Harvoni x8weeks.

Tig


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Hello TigerLily,

Welcome from me, too! I see you're from the state of Texas! Great place and great people! We have one or two of you folks here and we love talking food. BBQ spoken here!

If you have been lurking awhile, then you know we specialize in positivity around here. Don't let anxiety get the best of you. We all know the feeling and can assure you that the journey is easier than the pre treatment uncertainty. The best way to improve things is to educate yourself. The truth will set you at ease! We'll be here to help you any way we can. 

Check out the title bar at the top. The Home page has all the different sections, review current info and ask questions. smile



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Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Hey thanks for the further details Tigerlily,

You said  ... "So far the only test results I have had are Hep C reactive, signal to cut off 26.80, RNA PCR 485569, and  5.69. ALT 78, and AST 48. I do not go to the Specialist until June" ...

So, just in case you have not had it explained to you before, or if you haven't already figured it out by yourself, I will attempt to interpret these numbers (take my guesses with a grain of salt tho) you have to rely on your docs.

With a confirmed case of HCV, such as your HCV PCR test indicates by showing how much of a viral load you have, the 485,569 number is the amount of the virus they can detect in your sample, your "viral load" (VL) count. 485,569 IU/ml can also be expressed another way, in "logs", your VL count is the equivilent of 5.69 logs. Just another way the lab or docs might speak of your load. Yours is what can be considered a "low" load.

Having an elevated ALT or AST is also what we commonly see here when you have HCV. Some countries and labs use different "reference ranges" of what number is considered to be within "normal" limits - read any lab results you get carefully, to see what "ref. ranges" your lab and doc go by and use, to know where your results stand in comparison to the normal.

Here in Canada we can still find labs using different ref. ranges - a "normal" ALT can be either between 3 to 36, or as wide as 17 to 63. A "normal" AST here can be between 0 to 36, or as wide as 18 to 40. So, you can see you have to go by what normal ref ranges your lab and doc use.

Jaggles has done a good job advising you, I too think you will do well. And yes, things do get better! Certainly better than what you have probably been gong through right now!

If you are spinning your wheels, you can ask you first doc, family doc I presume (prior to your visit with the hep specialist? in June), to get started on assessing your current levels of hepA/B immunity, just a simple blood test, good info to arrive with to see your specialist - specilaist then can direct you (more quickly) as to what immunizations he would like to see you have (or not) as far a hep A/B, and as well influenza and pneumoccocal shots can be decided on if necessary.

You can also ask your family doc if you could go for an abd. U/S, and if you could have a "fibroscan", as they are also very helpful info, and your hep specilaist may ask you to have them done when you see him.

Anything that you can work on getting started or "out of the way" as soon as possible with your family doc, should only help make things go a bit faster in the approach to treatment with your hep specilaist.

Try to find out your GT and sub-type, that will be useful info. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Greetings.

Just commenting on the title, we all know what you mean. We all remember being told. You are in the right place and among friends.

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Tigerlily wrote:

Thanks for all of your kind words. Makes me feel better. Just want this all behind me.


 EXACTLY how we all feel when we get that news...it will be over but take good care of yourself....you must get strong to beat the bugger!!!! And the drugs today are good ....you can get through this and you will be ok. 

xx



__________________

HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 53 Fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 



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Thanks for all of your kind words. Makes me feel better. Just want this all behind me.



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"49, F, Dx 04/14/2017, GT 1a, VL 288000 (Log 5.46), pre-treatment ALT was 78, AST 48. Fibroscan, Fscore 0, kPA 2.8. SOT 06/20/2017-Harvoni x8weeks.



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Oh bless you....it's aweful...and I too had past regrets....it's like being punched in the gut from your past....but I did contact Hep C Trust ( UK) who were very supportive and then came on here ....I'm honestly so glad I cand here and you will be to. Once they know your genotype and any liver damage etc they can decide on treatment options. Just keep making a nuiseance  of yourself at your doctors and keep well informed about your options.

i am feeling so much better already...mostly in the head and energy levels but only 4 weeks into a 12 week course. I wish you a speedy conclusion to your treatment route ....you will be fine chick xx



__________________

HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 53 Fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 



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Jaggles, 

 No I do not know that genotype yet. I was feeling crummy and went to the doctor thinking that my thyroid was off.....have some past regrets...so asked to be tested for HEP C, and well here I am.  Waiting for appt in June to find out the rest. Every since I was diagnosed all I think about is HEP C and all the little things wrong with me that I would never give a second thought to before.  lol

 



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"49, F, Dx 04/14/2017, GT 1a, VL 288000 (Log 5.46), pre-treatment ALT was 78, AST 48. Fibroscan, Fscore 0, kPA 2.8. SOT 06/20/2017-Harvoni x8weeks.



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Tigerlily wrote:

So far the only test results I have had are Hep C reactive, signal to cut off 26.80, RNA PCR 485569, and  5.69. ALT 78, and AST 48. I do not go to the Specialist until June. 

Do you ever feel normal again? Not only body wise but brainwise? lol


 I can tell you the first thing I have noticed on treatment is brain fog has gone....my head is MUCH clearer ....my aches are much better and I have energy....yes....energy biggrin

glad Canuck picked you up....hi Canuck xx



-- Edited by Jaggles on Tuesday 2nd of May 2017 04:24:17 PM

__________________

HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 53 Fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 



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I did the same....I stalked other people's threads trying to figure out what the hell I was up against....so much misinformation out there in the world....at least here you get good advice from specialists ....I ended up knowing more about hep c than my GP lol

its much better treated these days and once you get over the shock and start looking to get treated you will feel so much better. Do you know your genotype etc? The gurus on here like Tig, Canuck and so many more will guide you ....im on Epclusa...1st month done tomorrow 2 more months to go....I feel fantastic....I have been ill so long undiagnosed but right now I'm getting the old me back.....hope you get sorted out soon xx

J



__________________

HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 53 Fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 



Member

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Posts: 31
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So far the only test results I have had are Hep C reactive, signal to cut off 26.80, RNA PCR 485569, and  5.69. ALT 78, and AST 48. I do not go to the Specialist until June. 

Do you ever feel normal again? Not only body wise but brainwise? lol



__________________

"49, F, Dx 04/14/2017, GT 1a, VL 288000 (Log 5.46), pre-treatment ALT was 78, AST 48. Fibroscan, Fscore 0, kPA 2.8. SOT 06/20/2017-Harvoni x8weeks.



Guru

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Hi Tigerlily,

Welcome here, I'm glad you came. Don't worry, this is a safe place to land. You don't have to go anywhere you don't want to go. There are a bunch of nice understanding folk here. We all understand distraught! I hope we can help you feel better about things. I looked in from the edges too when I first came to this site. All in all it, it was a very good thing I found this place. I hope you will find it so as well.

Please do share some of your basisc info, GT, the tests/results you have completed thus far, and/or just fire away if you have any burning questions. The background info helps us in forming better, more thoughtful informed answers for you. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Thank you for your welcome. After reading so many posts I feel like I know you all already. lol



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"49, F, Dx 04/14/2017, GT 1a, VL 288000 (Log 5.46), pre-treatment ALT was 78, AST 48. Fibroscan, Fscore 0, kPA 2.8. SOT 06/20/2017-Harvoni x8weeks.



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Hi TL

Welcome .....glad you found the courage to say hello....I was a little afraid to start but everyone so helpful and supportive I never felt alone. The people here helped me deal with diagnosis which was terrifying. I am now 3rd way through treatment feeling like I have my life back and feeling much better,.. try to utilise this site to help you find answers and get knowledge about your diagnosis and treatment options. You will get through this!!!! Don't lurk on the side....no need...you don't have to face this alone we all in same boat together....hugs 

J xx



__________________

HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 53 Fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 



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Posts: 31
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Hello, I have been lurking on the side lines and finally have the courage to say hello. I am so new to this and very distraught. But I see all of the positive feedback everyone is receiving. Hope to get the same.



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"49, F, Dx 04/14/2017, GT 1a, VL 288000 (Log 5.46), pre-treatment ALT was 78, AST 48. Fibroscan, Fscore 0, kPA 2.8. SOT 06/20/2017-Harvoni x8weeks.

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