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Avatar universal

Just diagnosed with help C

I am so very scared.  Docs thought I had hemacromotosis  Ferritin levels were extremely high. as well as my iron level.  AST and ALT were high.  Decided to test for HEP A, B, and C.  C came back positive.  My levels are 10 million.

Having trouble getting a doc to see me as quickly as I like, so I am trying to get into Duke.  I really don't know what to be the most concerned with.  I am extremely depressed, do not feel well, etc.  

Any advice?
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Avatar universal
I hear what you are saying.  

My pains are pretty much the same as they were when I was having a little wine here and there.  Actually, we thought I had an ulcer.  I can't pinpoint my fatique, because my job is so hectic, that I have ALWAYS felt tired.  Now I just have an excuse......  my digestive system, so far, is fine.  I am just staying away from high iron and fatty foods.  But no problems there.  I still have an appetite, but am semi depressed, so really don't care as much about food as I once did.  Sound familiar?

My anxiety I believe stems from the waiting,,,, and the not knowing,,,,,and my boyfriend being so freaked out.  I wake up evey morning to him throwing up, he is so stressed over this.  

This has all GOT to get easier.
Helpful - 0
190885 tn?1333025891
what i'm saying is first you may have had hep for a long time..and like a lot of us around 50 the sx start...the hep virus acting up because it's that time and aggravated by drinking and then shuting off the alcohol can give you withdrawals...even though you may have felt you could cut the alcohol with out a problem at any point...i'm not saying this is all thats going on, just that it could be a big part of it..for sure added anxiety...as i was reading about alcoholism when i first found out i had hep i had trouble believing that i was in that category..i have no problem ..or very little problem not drinking...but suffered the sx for quit a while after i stopped..i'm sure the hep together with the alcohol is nasty...i have to wonder if you look back to when you shut off the alcohol did you notice being more tired a few weeks after? and do you have more anxiety lately?...my anxiety was so bad for a while that i was scared of driving too far away from home..felt faint while waiting in lines...i had pains in my liver area and i believe that was from my liver shrinking(getting better) and still i find my digestive system very fragile..when i change any thing in my diet stuff goes on for a while...took me 3 months for the real bad stuff to calm down a little..remember ...you have hep c and you were drinking...again the point is your not like someone that was drinking without hep c..much worse....things will all work out for you though...keep reading other posts and you'll get a handle of folks in all phases of hep from just getting dx to some that have been svr for years...good luck...billy
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Avatar universal
I am 50 years old, so I have been drinking wine most of my adult life.  off and on.  but not drinking any wine has not been a big deal to me.  I don't feel like I am having any withdrawals from that.  My biggest complaint is my stomach.  tender and bloated.  also fatigue.  And the worry....don't know how to get rid of that!

I hope you are right.  In six weeks, maybe I will feel better.  I just want to get this party started.  The waiting is killing me!!!!
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190885 tn?1333025891
i don't know how much or how long you were drinking that wine but i will say the withdrawals can be way worse then someone that drinks the same amount and doesn't have hep c...i cut down to 1 to 2 beers a day for a year thinking that was nothing and when i stopped them i had bad withdrawals for 6 months...of course the anxiety just makes everything worse and anxiety is probably the number 1 sx of alcohol withdrawals...i would think in 6 more weeks you'll feel a little better...good luck...billy
Helpful - 0
374652 tn?1494811435
Hi again,
I had discomfort, spasm in my Right upper quadrant, right where the liver is, then I had headaches.... you can scare yourself to death i'm telling you... turns out I have IBS due to my constant worrying, stress.  I am now on AD's that have controlled the anxiety, they seem to be helping me.  All the worrying doesn't do any good, but I totally understand
Viral Load doesnt seem to make much difference except you've go more to kill if you do treat.  VL has no bearing on the damage to the liver.  VL fluctuates constantly I think as your immune system does its thing.  ALT levels do indicate something going on w/ the liver, but they too are not definitive indicator of damage.  Right now the definitive is the biopsy, which was a breeze for me,  as much as I didn't want to have it done I really needed to know what was going on.  Its true that its easier to deal w/ once you know.  Once you know what genotype you are will also help you determine your course of treatement.  I had my hep A & B vaccinations at the public health clinic, they couldn't have been nicer, they are really trying to track all of this to get a handle on the transmission of Hep C.  the vaccine was free and they gave me corroborative (word?) information.  They treat Hep C just like their 120 other communicable diseases.  They say its very common and there are so many variables with each individual person.  The bottom line is there is treatment, there are new drugs in the works and you just have to find out where you are at.  Have you had your ultrasound yet?  That is a good tool too, and it felt so good, warm and soothing.  Also its not a death sentence, its a shock and a huge reminder to smell the roses, coffee, share love, get priorities straight, cuz everything is impermenent even hep c.  Love your liver....M

It took me almost that long to get my first appt. then I had to wait another month to get the biopsy.   Your will feel better when you see your hepatologist, and if you dont try to get another one.  Your medical team can make all the difference.  
Helpful - 0
Avatar universal
You guys are so awesome.  It really helps hearing from others with the same issues.

I am in Charlotte, NC.  Can't seem to find a good Dr. that can see me soon enough!!

I have an appt. at Duke on March 26.  Seems like forever.....

What about my levels?  10.3 viral load.  Should I be like, really concerned?  My GP has been testing my liver enzymes.  My AST and ALT as well as the Ferritin have been declining steadily since 1/17/08.    All I have done is changed my diet.  My iron level is now normal.  It was really sky high.  There is absolutely no alcholol these days and no drugs, not even over the counter.  Except for Prevacid that my GP gave me.  Do you think I should be taking that?

My stomach feels bloated and tight.  Is that normal?

Thanks guys, for all your feedback!
Helpful - 0
374652 tn?1494811435
Hi,
You sound exactly like me 1 month ago, I was freaked out.. and on top of it I got fired, lost insurance, could not refinance my home w/o a job.  So make sure you come to this site, ask you questions, come for reassurance,  This is a slow progressing disease, most people die with it not from it.  You need the liver biopsy and this virus diagnosis, prognosis, tx is a WAITING GAME.  You will be allright, once you get the biopsy your provider can put it together for you.  If you are near Duke, you can probably access them as well to determine your best next move.  I have decided to wait to treat since I carry the genotype that is harder to treat and I have minimal inflammation stage 1 w/ VL 800,000.  So I am going to wait due to circumstances, and the fact that my diagnosis allows me to wait for possibly treatments that will increase the odds of clearing.  The best available treatment at this time can be really hard to endure.  you will not know what is going on until the docs put it together for you after all the tests.  See what I mean about the waiting game, just remember no alcohol, liver friendly diet & lifestyle and the liver is an amazing organ able to rejenerate itself.  Keep the faith, do what you can and allow yourself to relax.  Stress is not good either.. best of luck, keep us posted, Mary
Helpful - 0
Avatar universal
what state do you live in?
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Avatar universal
Thank you so much!!
I am trying to get in with a good hepatologist,  but it isn't easy.

My viral load is 10.3 million.  AST is 95  ALT is 154.  Ferritin is 570.

Everrthing else is in line.

Does any of this mean anything to you?

I do have stomach pains, tired all the time, I am not yellow at all and have not had any alchohol in about 6 weeks.    My AST, ALT and Ferritin have all been steadily dropping since the 17th of January.  Just found out I have Hep C last Friday.
Helpful - 0
Avatar universal
Oh, get a good hepatologist...I've found that most GPs and even GI docs aren't fluent in Hepanese (hep C talk and treatment)...LOL...Hang in there...The waiting for the ball to roll is the worst part of this whole mess...
Helpful - 0
Avatar universal
Welcome newbie!
Sorry we had to meet you like this...Okay, first of all..(((((((((((((((((((((((HUGZ))))))))))))))))))
So, you've been diagnosed (dx) with hep c...It is a disease from contaminated blood...it can only be spread by blood to blood contact...You may not know when you got it, or how...That won't effect how you do with it...You will be getting quite a few blood test and others in the near future...You'll want to know what your genotype is (hep c has genotypes 1-6, with only 1,2 and 3 being the ones we are concerned with..it is the "strain" you have been "blessed" with)...Next, you will find out your viral load (AKA PCR)...this is the amount of copies of the virus in your blood...Anything under 400,000 is considered low, under 5 million medium, and over that, high...the viral load fluctuates widely and is only a measurement of how active the hep c is...it doesn't reflect how much damage your liver has...
Next to come is a liver biopsy (BX)...It involves a guided (CAT scan or ultrasound) thin needle that gets 3-5 samples of your liver for evaluation...Most doctors won't have the patient do treatment before having this done...The results are measured on a 1-4 scale in "stage" and "grade"....The "stage' means damage found (1-2=fibrosis, which is reversible pre-scarring, 3-4 is cirrhosis, permanent scarring)
The "grade" means chronic inflammation, meaning, how hard you liver is working..For example, grade 1, would be mild inflammation, grade 4 would be severe indicating the liver is being "maxed out"...
Back to genotype...Some genos respond better to tx (treatment) than others...and carry their own rules of progression...I know, this is a lot of information...Most people can carry on normal lives while they walk around with hep c...I'd have never known I had it, were it not for some liver enzyme elevations and feeling constantly tired (I thought it was because of a grumpy gall bladder and being a Mom, & working full time)...
Arm yourself with knowledge..It will make you sleep better, and it will help guide your health decisions..Also, don't share things like razors, tweezers, nail clippers, or other person grooming things that may get contaminated with blood..There are reports of people contracting Hep from dentist drills...(Ewww!) (One more reason to not like the dentist...) Hang in there and I'll look for your posts...Let us know how you're doing...
Helpful - 0
315996 tn?1429054229
You sound like me when I first was diagnosed with HCV. You might get in sooner with your specialist if you ask to be on the cancellation list. Other patients cancel and that creates an opening they will want to fill. What the specialist is going to offer/suggest is that you do a liver biopsy. That can't do much more for now. Once you have a liver biopsy you can know what stage and length of time you've had this thing. Stop eating foods that are fortified with Iron, etc. Stop eating read meat, it has lots of iron. You will survive it, trust me. I'm not doing treatment until they come up with a better one. Few people die from HCV. The hysterical ones on this list usually have other mitigating factors (overweight, fatty liver, alchohol, mental problems).
Helpful - 0
Avatar universal
I do not drink wine anymore.  I did, but stopped about six weeks ago when I thought I had an "ulcer".  

I am so afraid that I have had this a long time and it has been hammering away at my liver.  Maybe cirrhosis or something worse?

I really wish I could get into a Dr. sooner rather than later.
Helpful - 0
190885 tn?1333025891
slow down....you'll be alright...you sound just like everyone else that first finds out...if you drink at all ..stop all the way...get into a good diet...it will most likely take a couple months to get work done on dx..like geno type...stage and grade...all this makes a big difference in how to move ahead...and real estate sales is probably a good type of work to do while on tx..but you might wait for tx that are better in a few years...so slow down....read the forum a lot...see a doc..and get a biopsy...i still haven't tx and i've been on this forum for over a year..i found out i had hep c over 2 years ago...good luck...billy
Helpful - 0
422220 tn?1256764529
I live in Missouri.  I worry about work too.  I just recently missed almost a week of work with some kind of flu-like illness that hasn't been adequately explained by the medical staff I am seeing now.  I asked about working during tx a few weeks back and most responses I got here were from folks who said continuing working through tx helped them get through it.

As far as how you got it, sometimes it's really hard to tell.  In my personal experience, I could have gotten it in numerous ways.  My best guess is I probably have had mine for 20 or 30 years.  Have you been in the military or do you have any tattoos?  Have you received any blood products in the past?  They say you are not supposed to use other peoples razors, toothbrushes, manicure items or anything that might have had blood residue on it.

Try not to beat yourself up on how you got it.  Considering a Las Vegas clinic has potentially exposed 40,000 patients to HCV and HIV, it could have come from anywhere.  Is this just a random clinic or are there others using inadequate safety measures?  Considering a lot of folks have this disease 20-30 years before they start showing symptoms, I'm not surprised it's hard to trace back to that one bad moment.
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Avatar universal
Guess it could be worse.  At least I have insurance.  But it doesn't seem to make any difference getting into seeing a doctor.  

And I am just racking my brain trying to figure out how I got this!!!!!  Have I had it for years?  Did I just contract it?  I am not a drug user, never have been, have been married until 4 years ago.  Am in a 3 year monogamous relationship.  He tests negative.  

I guess it doesn't matter.  I just have to deal with the fact that I have it.  I am just really scared that I am going to get sicker, and I don't know how I am going to deal with that.  I wonder if alot of people have to stop working while going through treatment?  Do you know?

I hope you get in to see a doc soon.  What area of the country are you in?
Helpful - 0
422220 tn?1256764529
I've only known about my hep C for a month now so I can't offer too much info as I am learning too.  This forum is a great place to start.  I've learned a lot here.

I can relate about seeming forever to get to a doctor.  I'm going 'round and 'round trying to get the most info for the least amount of out of pocket expense.  I don't have insurance, so it really sucks getting written off before I even get started.

I'm scared of tx, but I want to start it soon as possible.  That day seems very far away for me.

Research the correct vitamins and supplements and work on learning to have a liver healthy diet.  That's something you can do for yourself for starters.
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Avatar universal
Other than my health, I am really concerned with how all this is going to affect my family, my job.  What am I in for?  Am I going to need help through treatment?  My significant other would not do well at that.

I am 50 years old.  I have a successful real estate career that is ALL consuming.  I don't know how I am going to juggle everything.  

What am I in for?
Helpful - 0
233002 tn?1316027966
Relax and learn how to be calm, you are in for a long ride. or many it ends with success and there is hope everywhere, especially here.
Helpful - 0
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