Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
Hello there everyone. I want you all to know how great it is to read about your journeys with Hep C and treatment. I'm not on treatment and not certain I even want to try anymore. I'm seeking advice please, have any of you had problems with hair loss, severe pain in area above liver, diarrhea/stomach pain daily, loss of appetite, dizziness and shortness of breath? I have gone to the Dr and I have NAFLD and the beginning stage of cirrhosis, diabetes, and high blood pressure. I don't want to go back on treatment (peg interferon and ribo). I was doing OK but now my hair falling out is freaking me out! Any advice?
If you are feeling bad now , as the disease progresses it only gets worse.
The new treatments are not anywhere near as bad and for me personally I have never felt better .and very few sides.. some people do have different reactions
I would suggest if it is possible go for look into your options and check everything out ..It is awful to have stage 4 cirrhosis and I would never want anybody to get that bad .. I wish the TX was better before I got so sick ...
Most folks on here are willing to sghare and helppeople so
all the best
!
I am now 8-9 mo Post Tx , almost a year now...wow
so good to hear you are doing well and progressing also...just a miracle...and what science keeps doing with HCV....now a new drug coming out for all geno types...just amazing...I am hangining in there with digestion problems now and then , seem to come and go...figure time is healing after a long long road of distruction...NOW just to get the docs to understand that....At the gastro office they had a Hep C magazine and on first page said Hep C produces damaging llivers.. diminshing its ability to cleanse blood, digest food and store energy...that is what I was there for ..slow digestion, bloating and stomach discomfort !! she said none of those are from the medicine ????? dahhhh I didn't say medicine...We are learning about recovery.... she
ordered a colonoscopy and a CT ...didn't do any of them...no $$$$ total was $500.00 on my part for both.....
seems to come and go- two weeks at a time..and then gone and comes back in a month or two...hope it is gone for good now...we'll see....good to hear your update
anne
My thyroid failed later due to the interfeuron. I started losing hair, actually I have lost 1/2 my hair twice in my life - either due to the thyroid, stress or the old treatments. It did come back. Scary thing.
I advise you to please check into the NEW treatments. I am/was genotype 3A - the hardest to beat with new meds and NOT do interfeuron with it.
My Hep Doc took a chance and I did Sovaldi with Ribavirin for 6 months (having my Riba reduced at 3 weeks due to intolerance and low RBC and oxygen counts.
It worked!! I am one year post treatment. I still have some fatty liver BUT all those symptoms you just mentioned slowly disappeared.
Yes, I still get the occasional indigestion but my liver no longer blows up (or I should say my stomach), I not longer feel like I have a band around my waist all the time.
I have energy now which I had actually been spending most of my time in bed. I was in constant pain.
There is NEW hope. I can testify the new treatments are nothing like the old stuff. Most never have to do interfeuron anymore and if you have the right genotype, you won't need Riba either.
I pray you find your way. It is awful to live with this disease active. no matter what, get your thyroid checked out. Mine took forever to finally show up on bloodwork - but it was real bad. I have hypothyroidism now and your symptoms sound a lot like thyroid also. Everyone blames the fatigue on Hep C, but a lot of mine was the thyroid.
God Bless and good luck. I know you are so sick of doctors and doing treatments - but give it one last try - you won't regret it!!
Not to pry and you don't need to answer of course.
have you had your thyroid checked ?
Do you still have your gallbladder? some of the symptoms are similar to GB issues....though of course, not hair loss
which brings me to another....assume you female , is it possible hair loss and even some other of your sx , could be hormonal.....like menopause or post menopause.
( I would also ask Tomorrow's Hope that question , too bc peri menopause, then menopause can cause lots of digestion symptoms but then again so can gallbladder and so many other things)
well , shoot, i had written that much before I re read your post and realize you had been on tx, but stopped.
so what is your genotype ? surely you don't have to do the peg/interferon, do you ?
to also add to what tomorrows hope said, I am happy ,so happy to report, now that I did my tx, (genotype 2b; Sovaldi/Ribavirin) my decades long bloated tummy, has become normal-ish ( lol ) It is something I realized last week....I felt my tummy with my hand and thought hmmm, where is the huge watermelon , hard giant thing I am used to feeling here ? It is flatter (now don't get me wrong you won't see me in a 2 piece bathing suit) but it is flat, for me......and kind of squishy , which again, for me is a good thing.
it has definitely changed for the better. Doc said I do not have ascites which is something I had wondered bc of that tummy
.
one more idea: I had huge bloating, gas, rumbling type problems for many years and ( my gallbladder was removed in late 90's) and several months ago , I stopped drinking milk and now drink almond "milk" instead and that helped a LOT.
but the smaller size and other good things is from successful tx, I feel certain
I always write too much in my attempt to be helpful and I admit I started typing before reading the rest of the posts.
now , this is something I always preach about to people, with and without HepC.......you said iron supplements......that always scares me to hear.
what is the cause of the anemia ? what type of anemia is it, because there is not a one sized fits all kind?
reason I ask is iron does not leave the body , other than through blood loss....I think the liver stores it (?) and, too much is toxic, to the liver.
first thing I was told when I was diagnosed with HepC, and referred to the American Liver Foundation, was to not consume any iron and to not use iron cooking pots and pans...because it leeches into the food and is bad for the liver.
( i don't think cast iron pots are a problem for healthy people with no liver disease )
so it is very important to know if your anemia is iron deficiency anemia, or another type.
I recently finished tx, with Sov/Ribavirin and I was very anemic , througout the tx, bc of the Ribavirin.
my liver doc had told me it would happen , and that it is expected during tx with riba, and it will reverse when the tx is stopped.
now, this type of anemia is called hemolytic anemia which has nothing to do with iron. I made the mistake of telling friends and family about my anemia and they were all trying to talk me into eating liver and other iron rich foods. I could not get them to understand. (for the sake of examples, there is a B12 deficiency /anemia also.....I think that one is called pernicious anemia.)
Yes, anemia causes huge fatigue.....that part might be the same for all types.
anyway , if you do not know for sure which kind you have, please check with your doctor.
is the doctor that prescribed the iron supplements, the liver specialist/gastroenterologist.......and/or does this doctor know everything about your virus and tx. (sorry if I am confused on that part)
Hope I have not been too annoying. trying to help. lol