Fatigue

I am new to this site. Never talked to anyone besides one woman with HepC and she never had any symptoms until she ended up with cirrhosis. I have struggled with some fatigue over the years (diagnosed about 15 years ago). Over the past year, the fatigue has become worse. So bad, in fact that I have had to cut back my hours at work. Can't do much of the things I used to do. I don't drink and my liver enzymes are elevated as usual but not too much.Other labs were okay. Went to a hepatologist and was told my hepC can't be making me so exhausted. Just wanted to hear if other people with HepC struggle with this as well. Thanks!

[HectorSF]

Hi! Thanks for your reply.

First of all, remember you are not alone. There are many good caring people here in this community who will help you in whatever way they can. Hepatitis is not "fun", but it is something you can learn to live with and manage and hopefully cure. We are all learning here and sharing our experiences, empathy and knowledge to help each other. The more support each of us has, whether family, friends or online the easier the load. So remember we are in this together. Any stigma about hepatitis is in the mind of others who are ignorant of this disease. So there is no blame, only the desire to manage our ill as best we can and for many do treatment to rid themselves of this illness. Yes, this is a curable disease and many, many now live free of it after suffering with it and the sometimes having a difficult time during the many months of treatment. As very some there will be new medicine which will almost double the rate of cure for many with genotype 1. So in a strange way, this is as good of time ever for persons with hepatitis C.

A couple of things you may want to think about based on your new comments...

"My AST ALT are not bad, I think low 100's for both". Not bad? Well they are not good either. Meaning something is damaging you liver and that is not normal. How the doctor could say it is "not bad" or normal is beyond me. The normal range is AST=16-41 and ALT+12-59. AST/ALT is NOT an indicator of the extent of liver disease. (I have decompensated liver disease and am waiting for a liver transplant and am listed for transplant at 2 transplant centers. My AST when last checked was 76 and my ALT 39 (within norm!) so don't be fooled by these two blood levels. They don't necessarily indicated the status of the liver).

"He just told me I should go for more tests somewhere because it must be something else wrong with me" Well yes there is something damaging your liver. That is what the ALT particularly, and AST indicate. A healthy person does not have liver enzymes that high."He also stated that my liver was fine based on the lab-work and he didn't need me to do any other tests". This I don't understand. You said that you had mild fibrosis about 10 years ago. Thinks can progress in ten years. Hopefully it hasn't but please follow up so you know exactly what is causing your fatigue and high AST/ALT levels. This isn't normal. He is right it could be "something else" also but having mild fibrosis 10 year ago and now having ongoing damage to your liver is not something you want to live with if you can help it.

Your profile doesn't say where you are located. Surely there must be another gastroenterologist around that you can see sooner? Are there any any large teaching hospitals nearby? You can search the hospital's website and they will indicate what services they provide. Look for Gastroenterology or better yet a hospital that perform liver transplants where they will have many very experienced hepatologists. I am not sure why your doctor you have been so laid back about your symptoms especially since it is affecting your ability to earn a living. You want a medical caregiver. Someone you can trust and will partner with you to get to the bottom of what is going on. (!) FYI: Whatever happens, don't let you medical insurance lapse (there is always COBRA) should you become unable to work.

Hang in there.
Keep us up to date so we can help you resolve this.

HectorSF

[copyman]

Hi and welcome to the forum

"Went to a hepatologist and was told my hepC can't be making me so exhausted"

Are you sure you heard a hepatologist say this? Very odd because the #1 symptom of HCV is fatigue.

There are new drugs coming out this year and this is a perfect opportunity for you to finally treat your disease.

Best of luck

[HectorSF]

Hi! Sorry to hear about your condition.

Others I'm sure will comment of fatigue and hepatitis C. I wanted to share my experience with you as one who has extensive fatigue, hepatitis C and stage 4 cirrhosis of the liver.

Liver disease can be caused by many things. Hepatitis C being one of them.
When the liver disease progresses to stage 4you will become fatigued at some-point during cirrhosis. When a person progresses from compensated to decompensated cirrhosis fatigue is a major issue along will other symptoms as the liver is no longer able to perform all of its many functions any longer.
When I became decompensated after being compensated for years I was longer able to work. Just commuting to work became like hiking Mt Everest. I now can only do something for maybe 2 hours and then I am exhausted. The sicker you get the more fatigued a person becomes.

I hope your liver disease has not progressed to cirrhosis. A very small percentage of women progress to cirrhosis compared to men. As you are seeing a hepatologist she/he should be determining the extent of your liver disease and telling you what your options are. Have you had a liver biopsy yet? Do you have blood levels out of range (bilirubin, platelet count, INR, ALT/AST). Have you had any imaging done on your abdomen?

There are medicines that help to manage the symptoms of advanced cirrhosis unfortunately there is no treatment for fatigue. But you can try to stay as healthy are possible and that will reduce your fatigue somewhat.

What is your doctor planning to do?
Please follow through with a doctor to get to the cause of your fatigue as soon as you can as it could be dangerous to wait another 6 months or a year especially if you have cirrhosis. It is affecting you life and you need to find out the cause.

Best of luck. Let us know.

HectorSF

[willbb]

Hi there,

I have had HCV for 35 yrs. with very few symptoms,however   even at stage 1 fibrosis  fatigue has always been somewhat of an issue for me.

It may be a good idea to talk to your Hepa about having a biopsy to assess the degree of fibrosis you have in order to know if treatment is warranted now or sometime in the near future.

Things look bright  in the near future for treatment as new and more effective meds will be available shortly.

Hope that helps  some..

WILL

[helpinohio11]

Thanks for your reply. It's been very hard to deal with this disease by myself for the last 15 years. About 10 years ago I had a biopsy done and was told I just had "mild fibrosis". Tried Peg treatment about 7-8 yrs ago and got extremely ill. Got severe anemia, over half my hair fell out in one month. Couldn't work or do anything. Never ever felt so sick in my life. Have genotype 1A. This gastro/hep guy saw me a few weeks ago and said my HepC doesn't cause fatigue. I was always under the impression that it did. My AST ALT are not bad, I think low 100's for both. He just told me I should go for more tests somewhere because it must be something else wrong with me. He also stated that my liver was fine based on the labwork and he didn't need me to do any other tests I have read that the enzyme levels don't always correspond with the state of your liver. I don't know what to do at this point. I had tried to see some different hepatologists in my area but was told it was about 6 months for first appointment. Again, thanks for your response. Has been so hard to deal with this all on my own.

[Bill1954]

Fatigue was the issue that eventually led to my diagnosis. In 2003 I was working out of state in construction, and found myself having to curl up and take naps some days by 10:00 am. I flew home for a long weekend, saw a doc who diagnosed me with type 2 diabetes. I get that controlled with diet and meds, but was still exhausted a year later; this time they found HCV.

Flash forward several years and two treatment sessions later, and I feel much better. Was the fatigue HCV associated? Dunno for sure, but it certainly seems that way.

I believe your liver enzymes are consistent with chronic HCV; and no, neither elevated liver enzymes nor viral load necessarily correlates with disease progression.

Certain blood test results *can* help determine if a patient has developed cirrhosis; platelets, albumin, bilirubin, and INR are often used for diagnosis in the absence of liver biopsy. You’re doctor likely reviewed these and along with other criteria didn’t sense any urgency.

Although I’m from California, I’ve worked in Columbus, Ohio and have the t-shirt :o).

For now and in the foreseeable future, HCV therapy will continue to utilize interferon and ribavirin, although perhaps with other adjunctive drugs and probably a much higher success rate. I was also genotype 1a as well, by the way.

They are managing side effects more effectively now; they are more likely to offer things to boost red and white blood cells, offer antidepressant prophylaxis, etc.

The majority now manage to muddle through this somehow. Talk with your doctor about the new class of drugs known as ‘STAT-C’, which will be added to the current drugs, and hopefully be FDA approved by later this year.

Good luck, and welcome to the discussion group-

-Bill

[copyman]

after reading your reply I personally would find another doctor

[Boobert]

I agree with Copyman, I'd wait the 6 months to see another Doctor.

[HectorSF]

Hi! Thanks for your reply.

First of all, remember you are not alone. There are many good caring people here in this community who will help you in whatever way they can. Hepatitis is not "fun", but it is something you can learn to live with and manage and hopefully cure. We are all learning here and sharing our experiences, empathy and knowledge to help each other. The more support each of us has, whether family, friends or online the easier the load. So remember we are in this together. Any stigma about hepatitis is in the mind of others who are ignorant of this disease. So there is no blame, only the desire to manage our ill as best we can and for many do treatment to rid themselves of this illness. Yes, this is a curable disease and many, many now live free of it after suffering with it and the sometimes having a difficult time during the many months of treatment. As very some there will be new medicine which will almost double the rate of cure for many with genotype 1. So in a strange way, this is as good of time ever for persons with hepatitis C.

A couple of things you may want to think about based on your new comments...

"My AST ALT are not bad, I think low 100's for both". Not bad? Well they are not good either. Meaning something is damaging you liver and that is not normal. How the doctor could say it is "not bad" or normal is beyond me. The normal range is AST=16-41 and ALT+12-59. AST/ALT is NOT an indicator of the extent of liver disease. (I have decompensated liver disease and am waiting for a liver transplant and am listed for transplant at 2 transplant centers. My AST when last checked was 76 and my ALT 39 (within norm!) so don't be fooled by these two blood levels. They don't necessarily indicated the status of the liver).

"He just told me I should go for more tests somewhere because it must be something else wrong with me" Well yes there is something damaging your liver. That is what the ALT particularly, and AST indicate. A healthy person does not have liver enzymes that high."He also stated that my liver was fine based on the lab-work and he didn't need me to do any other tests". This I don't understand. You said that you had mild fibrosis about 10 years ago. Thinks can progress in ten years. Hopefully it hasn't but please follow up so you know exactly what is causing your fatigue and high AST/ALT levels. This isn't normal. He is right it could be "something else" also but having mild fibrosis 10 year ago and now having ongoing damage to your liver is not something you want to live with if you can help it.

Your profile doesn't say where you are located. Surely there must be another gastroenterologist around that you can see sooner? Are there any any large teaching hospitals nearby? You can search the hospital's website and they will indicate what services they provide. Look for Gastroenterology or better yet a hospital that perform liver transplants where they will have many very experienced hepatologists. I am not sure why your doctor you have been so laid back about your symptoms especially since it is affecting your ability to earn a living. You want a medical caregiver. Someone you can trust and will partner with you to get to the bottom of what is going on. (!) FYI: Whatever happens, don't let you medical insurance lapse (there is always COBRA) should you become unable to work.

Hang in there.
Keep us up to date so we can help you resolve this.

HectorSF

[AjaLee]

My first post here, as well.  I agree with the others -  find another doctor.

I treated unsuccesfully 8 or 9 years ago.  At that time, no one realized that if you  hadn't made significant progress by 12 weeks, there was no reason to continue, but if you had - you had a good chance of success.  I'm planning on trying again when the new protease inhibitors are approved. I have to say that the treatment was the worst year of my life, but I think that going into with the 12 week indicator to either say"stop treatment" or "you've got a good chance of clearing this" will help a lot as far as bearing the side effects. They should be out this summer, I hear.

I still have a lot of fatigue, but I started taking NT factor a couple of years ago, and it's not nearly as bad now.  I can't say for sure that that is what caused the improvement, but it might be worth a try for you.

Hoping for the best for you.  Keep us posted

[helpinohio11]

Just want to say thank you for writing. (also thanks to everyone else). I am going to take the advice of you all and schedule an appt with another gastro/hepc doc. I am in Columbus, Ohio so there are teaching hospitals. The couple of docs I tried to get in were with them so I will just call back and get in to see someone by the summer. I am just kind of freaked out because of my inability to work fulltime or do very many things. Haven't even done my honeymoon because I got so ill on the trip to get married, I didn't want to go through that again. Never realized how important my health was until this past year.  
I have some other health issues as well. have had very bad insomnia for the last 12 yrs. Got put on sleep meds many years ago. They had me on ambien and then various benzos. went off of those about a year ago only to have the insomnia become unbearable again and have to go back on them( not on the benzos now, on the z drug ambien) after a few months. I have seen so many docs for treatment of the insomnia and nothing outside of drugs have worked. Done the sleep studies, CBT, counseling, sleep lab, etc. I am certain the drugs don't help my liver so am doing a taper to try again. Also have a bulging disc in my neck and just started PT for that. The fatigue got worse this past year and I wasn't on anything when everything got bad. Decided to take a break from college over winter quarter to cut back on the stress level and see if I could get myself together. Was hoping to go back end of March for spring. Sorry if I am rambling but it's hard to write in a few sentences. Glad I finally looked for a place that other people have common experiences with this illness. Thanks again, T