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Author Topic: Question about how I've been feeling  (Read 8900 times)

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Offline roguebobby

  • Member
  • Posts: 3
Question about how I've been feeling
« on: August 27, 2015, 04:34:29 pm »
I'm in my late 20's, have been infected for around five years.  Until this last year, my viral load was too low for a genotype and I've never shown any progression.  About two months ago, I started to feel extreme fatigue, dizziness, lightheadedness, mental confusion, pressure on the back of my head, and pain where either my liver or right lung are.  It's a stabbing pain normally, which began infrequent and short, and now lasts much much longer and happens many times a day. 
When I went to my doctor, my viral load was in the hundred's of thousands (actually high for me), my ALT's were around 160, AST about 60, and my fibrosure came back an F0 but an A3 (.72).  I went to my GP this week as my symptoms have gotten worse and I have trouble going to work.  She had me tested for Lyme (six negative scores) and my ALT and AST were as high as before.  My bilirubin is fine, Albumin just barely higher than the range.  I'm not sure if my symptoms are normal for someone in such an early stage, or if there is something else going on in me.  Was hoping for any insight; if anyone shared a similar experience.  Thank you
Infected 2010
Fibrosure A3/F0
ALT 172/AST 51
VL 140000

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Question about how I've been feeling
« Reply #1 on: August 28, 2015, 08:18:58 am »
Hello roguebobby. I am an oldtimer LOL. But what you are posting touches a nerve. For the longest time when I was in my late twenties I did not know why the hell I could feel fine and then all of a sudden feel like crap even though I had no flu or other problems. Back then, the late 1970s long before  HCV was even on the radar for most doctors, they were stumped as to why I was having a hard time. They did liver tests and they were all not seriously out of whack but I knew there was something else going on. So they sent me to neurologists and other specialists trying to figure out why suddenly my system would go out of whack and I would have flu like weakness and symptoms. Including things like sudden mental loss of attention, (brain fog) accompanied by dizzyness and even mild spells of what was like mild strokes.

It took many years for me to actually be diagnosed with HCV but I can tell you that the disease comes and goes as you get older and there are times when it goes on the attack and really can put you on the couch. In fact in 1989 I was misdiagnosed and radiation treated for Graves disease because HCV caused a serious auto immune response where my immune system attacked my thyroid gland and caused it to over produce the hormone and even caused a fibrosis and swelling of the gland.

So the diagnosis of HCV took over 25 years in my case from the first onset of symptoms! 

INSIST UPON a genotype test and do not let the insurance companies stop you from getting treated and cleared of the virus asap.

It is completely socially irresponsible for the medical industry and insurance industry to say that this disease is not a serious problem. It seriously effects peoples lifetime productivity, it effects  married life, it causes more visits to health care facilities. Thus over the long term not treating the virus early in the progression of the disease is much more expensive.

The costs of in my case have been very high! I have lost perhaps 30 percent of my potential earning power because of this horrible disease over the years. And the failed treatment, exams, tests and over all care expenditure in Doctors visits, treatments for related conditions was huge. I am sure that the overall costs of the failed treatment and extra expensive VL testing, interferon and ribaviron cost add up over the long term to in the hundreds of thousands of dollars and I have lost more than that in income potential.

This situation has to change and soon. Be an advocate and be proactive in getting proper treatment and diagnosis! I am sure the insurance industry hopes you just give up trying. Don't let them off the hook!

All the best in your future.

Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Question about how I've been feeling
« Reply #2 on: August 28, 2015, 10:19:29 am »
roguebobby, my experience is a lot like Eric's. Hep C can confuse the heck out of a person's immune system -- and confuse a lot of doctors, too. Between the time I received Hep C through transfusions (1971) and the time the Hep C was diagnosed, I had various medical mysteries. In 1996 I was laid so low by fatigue and fever that doctors ran all sorts of tests and chose lupus nephritis as the closest fitting diagnosis, although they were still scratching their heads. (A kidney biopsy showed considerable kidney damage; meanwhile, my liver enzymes looked normal.) When my Hep C was finally diagnosed in 2002, the nephrologist said that some unusual things about my case finally made sense.
   It is only in recent years that my ALT and AST climbed rapidly. My VL has bounced around. Most other liver tests are either still normal or are often normal as they bounce around, ultrasounds still show no liver problems, yet my mid-May FibroScan indicated cirrhosis.
   Is there a hepatitis expert in your area -- if not a hepatologist then a gastroenterologist or infectious diseases expert who is now the go-to person for Hep C? That person should be more aware of symptoms like yours than a GP would be.
   Keep pressing for answers and treatment. Best of luck to you. -Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline roguebobby

  • Member
  • Posts: 3
Re: Question about how I've been feeling
« Reply #3 on: August 28, 2015, 01:21:13 pm »
Thanks, I've been seeing a hepatologist, and am genotype 1 with no identified subtype.  We're fighting the insurance battle currently to get me started on treatment; at this stage I have an F0 on the METAVIR so they're not wanting to pay.  Appeals are in process, in the meantime I can barely function and was once agin sent home from work halfway through my shift.  I can ask my doctor about my thyroid, a coworker's mother has HVC and had hypothyroidism, so she also suggested getting that checked.
Infected 2010
Fibrosure A3/F0
ALT 172/AST 51
VL 140000

Offline Mike

  • Member
  • Posts: 999
Re: Question about how I've been feeling
« Reply #4 on: August 28, 2015, 04:24:23 pm »
Hi Roguebobby,

HCV waxes and wanes and attacks the liver in spurts. Thus, liver inflammation can fluctuate, as can your liver enzymes. Viral loads can also fluctuate and do not correlate with liver damage (person with a low vital load can have significant liver damage; while a person with a high viral load may not have any liver damage or disease).

Fatigue is a frequent symptom of HCV as is pain in the right abdominal area and/or back pain, which is caused by the liver inflammation and enlargement.

I would have your GP refer you to a HCV specialist who may be able to provide you with additional information and insight.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

 


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