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Avatar universal

Reality Sets In

Good morning all,

I've done so much reading and now I don't think I have acute hep c as my dr has suggested. I think I have chronic hep c with severe liver disease. Instead of laying awake worrying myself into a frenzy, I'm researching diet changes that I can start immediately while waiting for my last test results. I think I have this because the symptom that could not be explained was my weight loss. I described it to my primary doctor as "wasting away." She said I was just panicking and weight loss was not associated with the hep c. True enough, I could not find that anywhere as a symptom, so it was still a mystery. Therefore, I did not discuss it with the Specialist when I saw him for the first time last week.

Tonight I was reading and ran across symptoms of severe liver disease. It talked about weight loss and loosing muscle. The muscle loss seems to describe what is going on with my body. It's kinda scary but I'm choosing not to be afraid. My butt is gone. I've always had a nice behind and now I have none. My thighs, have thinned out, my stomach. I'm a small woman as it is, so the weight loss has been very noticiable to everyone that knows me. I'm not skin and bones, but thinner. I currently weigh 133 - the lowest I dropped was 131 and now I just bounce between 131 - 136. My highest weight has been 153. I mean, it's not a bad weight for my height which is 5'1", but it is a significant drop. If I could be at this weight, it would not be unhealthy for me. The problem is that I dropped it in a very short period of time, like over the past 2 months. I dropped 5 lbs in one week.

Ok, you all may respond back like my doctor and tell me that I'm panicking. maybe I am. But I don't think so. I see know my body. For me, this drop is significant. I have a good appetite and eat. So it's not that I'm dropping because of loss of appetite.

Anyway, whatever the case may be, I'm keeping hope alive and will not be overtaken by fear. I'm a fighter! Whatever it is, I can and will handle it!  And So It Is!
23 Responses
12773 tn?1328916786
Maybe you have a hyper thyroid ?  did they test you for that ?   I have lost 102 lbs, but that has been during treatment,   only have 4 wks to go.  on 45 of 48 this week.  Your weight does not seem to be on the low side for your height.   You are about right.   Try not to worry about it, and have him do a Thyroid test on you.
220090 tn?1379170787
Severe liver disease has many other symptoms that you would experience before weight loss.  Perhaps you should find a good hepatologist at a major medical center and get a second opinion.

I wish you good luck and health.
12773 tn?1328916786
This is my 2nd time treating,   14 years ago, I was slow to respond, but long story, lost weight and after tx, gained my weight twice over.   I got up to as much as 274.   And developed diabetes, But was like 258 at starting tx this time, and lost 102 so far.   And the diabetes is gone.  Sugar is completely normal and all blood work looks fine, even had a c19 tumor test and every other test the doctor could think of, and a colonoscopy, found a few polyps and removed them.  Other than that, he could not find anything else.   Only 4 to go... have had to UND so far, and he will not test that again till 6 mos post.   So just sitting on the edge of my seat...   I do not want to gain this weight back, but afraid, will have to spend the big bucks to get rid of this skin.. LOL   And hope that I remain UND and SVR forever....  Its been a long hard road, and looking forward to a break, and will keep up with testing my blood from time to time to be sure.   But I know its from the meds, my losing this weight, as not much of an appetite, till lately.. But doctor was concerned over it as well.  I have lost so much I adjusted my riba myself, as once I got below 170..   I did not need 1200 a  day of Riba.  I will have some left over.     My Biopsy showed me at Stage 2 / grade 2  Genotype 1a
220090 tn?1379170787
Sounds like you are making lots of improvements.  Start exercising as soon as you feel well enough and the weight should stay off and even drop further.

Great work!  I hope I can do as well.
96938 tn?1189803458
Of course you're panicking, and that's ok.  You have a disease that you don't understand and you don't have all the diagnostic results that will tell you exactly where you are.  And, until you do you are staying up late at night reading and researching and looking for answers.  You are trying to gain control over that which you have no control - yet.  
Until you have all the information for you and the doc's to make recommendations and decisions you will be peering into a dark hole with the bottom obscured by fuzzy swirling clouds.  Not at all uncommon for those with hcv.
Butts are overrated.
Avatar universal
Well, I'll start with figuy, your reponse bought tears to my eyes because I believe what you said is so right on. I just want to know what's the bottom line and what we can start doing about it. I hate all this waiting and uncertanity. I'm sure you all have been through that already. The hardest thing for me to tolerate in any aspect of my life is the not understanding, not knowing. Yes, you're right, I do want to gain control. Mostly it's just I want to know. I need to start getting more sleep becasue I know that's not helping. I keep telling myself that I need to stay off the internet and stop reading and then I find myself right back at it. I did find a good site after I posted here and printed a lot of information to read through today. If I can just know, I can begin the acceptance process. It don't matter what it is, I just want to know. This is my anxiety and what makes me cry and become anxious, scared, and all the other emotions.

dperry, my primary doctor did a thyroid test and it was normal.

How did you all stand the waiting for results? I've had so many blood tests within the past two months.

Avatar universal
It's very common that after we are diagnosed with something -- especially something as dramatic as "Hepatitis C" -- that we start attributing every ache, pain, weight-loss/weight-gain, etc, etc -- to the condition. That's not to say that Hep C couln't be causing some of it, but certainly no evidence as you've presented it.

If you want to know whether you have "severe liver disease" then you need a biopsy or Fibroscan, among other testing. And BTW being "chronic" does not mean you have "severe liver disease".

Are you seeing a liver specialist (hepatologist) or a Gastro? If you want a better evaluation as to whether you're acute versus chronic and how much liver damage you have -- I'd see a hepatologist.

Meanwhile, don't worry and try not to over speculate.

-- Jim
276730 tn?1327966546
Unfortunately this is "the waiting" disease. We all must wait...labs, biopsy, PCRS, etc. It sure isnt easy. I am waiting to treat myself and after years of having this disease I am finding that for the first time Im somewhat out of control with my emotions the past few days. Anticipation is awful I know.
As Jim stated above "chronic" doesnt mean you have SEVERE liver disease.

Try to be easy on yourself.
We are our own worst enemy.
86075 tn?1238118691
for some reason it won't let me log in to give you the addy, but go to Janis and Friends (just dunk that in a search engine along with hepatitis c) and then go to the symptoms page.

It has I think one of the best compilations of symptoms that I've ever seen anyway. Of course, with some people, they will just learn they have more symptoms then they thought, lol...anyway losing weight can be a symptom, but it can also be a big symptom of stress as well, sometimes I think it's really hard to devy out what is causing what...

on one hand it's maddening when docs, whomever, won't validate symptoms that you know you have, on the other, we can work ourselves up too, I think the answer for me has been somewhere in the middle of all that...

I don't know what it is for you, there's no way I can know, but just get checked out and go step by step...these boards are wonderful to learn from once you do know exactly what you have, and the amount of damage you have (if any, and many, many people find out they have no damage or hardly at all) but the downside is if youre in limbo right now, and you don't know exactly what's going on with you, these boards, stories, etc might have the tendency to scare the beejueesus out of ya too....

All of us on this board, have seen sooooo many people come on here, convinced they were dying of this disease with little time left, only to find out they don't even have it, or have little damage (if at all) if they do...this phenomenon has happened to too many of us...relatively speaking, very, very few people have severe disease, especially now that people are getting tested much younger, etc....

I know I'm just talking the talk, cause I did the same thing youre doing, most of us did...but try not to freak out till you have some really solid evidence of what's going on with you, with the help of some good doctors, hepatologists, etc like was said...I wish I had that time back that I was in shut down mode, only to find out I had very little liver damage...charm said it, we can be our worst enemies when it comes to disease, the hardest thing sometimes is to get out of our own way, lol....wishing you the best....
Avatar universal
Why not go to your primary care dr. and get a full physical check up. It is not good to panic because fear of something can become a self fulfilling prophecy. The mind is very powerful and if you feed it negative things they bomberang on you. Write down all your blessings and be grateful for them. Try to be positive. Put the problem in the Lord's hands and do your best. That is all any of us can do. The results are in HIS hands.  
163305 tn?1333672171
The difficult thing for many of us, and more so for women, is hepC often doesn't show its nasty self until we are at the age where our bodies are changing anyway.
We lose our shapely bottoms sometime after the age of 40. Our energy drops, our minds become forgetful, we get hot flashes, our weight varies,our eyes weaken, etc.

Don't work yourself into a dither. Get yourself to a good heptologist and find out what your liver's condition really is. Put your active imagination to work doing something creative, like writing, drawing, dancing, or perfecting some exercise program.
Thats my advice anyway.    Good luck.
86075 tn?1238118691
good points, what a dirty trick to have to deal with menopause and this shite at the same time..UGH! guess guy's have their own stuff too...
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