Dr just called to tell me that she had misinformed me yesterday about my viral load (which she had insisted hadn't been run) but apparently the RNA was run...in Oct the viral load was "0" and as of last week it is 43,000...I know that is very low compared to many people here on this board that are very sick, but my question is...can it still get higher? from my looking around it can, right? and that viral load isn't necessarily indicative of the progressio of the disease...but she saidd I was too low to treat, modify my diet and I would be at the bottom of the specialists list to see even if I do have cirrhosis....hmmm....my blood tests are excellent...should I just set back and wait, hope to be remembered on someone's desk? it won't change what I'm doing for myself
"but she saidd I was too low to treat"
This is not correct, you might want to consider finding another doctor
Yes, it can get higher. For example in April I had around 150,000 and in October I was at 1.6 mil so a 10 time increase in 6 months
VL is not indicative of the disease progression, at the time of the 150k viral load I was diagnosed with severe fibrosis
As for diet modification, is doing absolutely nothing. I do not drink, I do not smoke, I am vegetarian, I was on lots of green smoothies before being diagnosed, I took all my life vitamins, homeopathic remedies, etc and that did not make a bit of difference in the progression of this disease. My blood tests were not bad either and guess what. On top of that I have been diagnose with cancer as well, non - hodgkins lymphoma stage 4 caused by the hep C virus
This is why I am treating now hoping to heal both
I think you have to go and ask for all possible tests and if you get no answer change your doctor with a more knowledgeable one. You cannot take the risk assuming that is some blood tests are looking good that means there is no damage in your liver or else in the body
Yes your viral load can change by the day, not sure what she is talking about it being to low to treat. Thats a first for me, as a matter of fact a lower viral load to start treatment with can have better odds of clearing Hep-C....... What kind of doctor is telling you this?
What kind of doctor are you seeing? Viral loads can change on their own without obvious reason and are not significant to whether or not to treat. I believe your doctor is misinformed. The condition of your liver is what matters. IMHO, everyone who can treat should treat, but when to do it is the real question. Current treatments are hard to handle, so if you have minimal liver damage (0-1) it might be best to wait for a year or two for the next treatment to become available. If your liver damage is at a fibrosis score of 3-4 then you probably need to treat sooner. I'm leaving a score if 2 open because it is a tougher decision to call. All of this should be discussed with a good hepatologist, or a gastroenterologist who is really specializing in diseases of the liver. Please don't just sit back and hope someone notices when you need treatment – it is far too dangerous a disease for that approach. Get a good, thorough and reliable evaluation and ask a lot of questions. At that point it might be safe to sit and wait, but only after all the facts are in. Best wishes!
Yes, the viral load can go higher. The VL fluctuates day to day. The VL is not indicative of the amount of liver damage.
Your VL is not too low to treat. Anyway, the condition of your liver is a major factor in determining when to treat.
I think your doctor is incorrect that you would be at the bottom of the specialist's list. You apparently have cirrhosis. That should put you at the top of the list, or close to it.
I looked back at your previous posts. On Dec. 16 you posted this:
"Still awaiting referral to hepatologist based on CT scan "mildly undulated and nodular contour of the liver suggesting early cirrhosis w/o findings of focal arterial enhancing lesions. Vascular anatomy is standard with left/right heptatic arteries arising from the common hepatic artery. Portal, SMV and splenic veins are patent and normal in caliber." "
Based on that CT scan, something is going on and it is not mild liver disease. It says "suggesting early cirrhosis" on that CT scan.
Also, you mentioned Primary Biliary Cirrhosis.
My suggestions is, do not sit back and hope someone will remember you. They probably won't. Advocate for yourself. Get a good Hepatologist. Follow Hector's suggestions in the other thread. If your doctor will not refer you, then refer yourself. But do get seen by a good Hepatologist before your liver disease progresses further. You do not want to wait for your cirrhosis top worsen or decompensate.
Unfortunately if you have a viral load you are chronically infected with the hepatitis C virus. That actual number of your viral load has nothing to do with the amount of liver disease you have or how rapidly it will progress. In your case Stage 4 (cirrhosis).
"can it still get higher? "
Does it matter? No. You have cirrhosis whatever the cause. Unless you can stop the progression of your liver disease at a certain time your cirrhosis will progress to a point you will not be able to treat your hepatitis and you will need a liver transplant to stay alive.
"she saidd I was too low to treat, modify my diet and I would be at the bottom of the specialists list to see even if I do have cirrhosis....
Whoever she is doesn't know the basics of treating hepatitis C. Find a doctor how does. Before the damage gets worse. Time is running out.
hmmm....my blood tests are excellent...should I just set back and wait, hope to be remembered on someone's desk?"
No! Normal blood test are not uncommon in early cirrhosis. It is only when portal hypertension develops that some person will experience abnormal blood levels. Blood level don't stage liver disease. You has cirrhosis, the final stage of liver disease. To sit back and do nothing will in time have dire consequences. This may be the last time you are healthy enough to treat your hepatitis C with treatment. To miss this opportunity would be tragic.
Find a doctor who has knowledge and experiences in treating hepatitis C soon. As I have told you and you can look it up on any of the gastroenterology or hepatology websites Primary Biliary Disease and untreated hepatitis C in a cirrhotic liver are both fatal diseases without a liver transplant!!!
I shouldn't be the one telling you this. A am only a patient not a doctor. It is not my role to do this. I try to avoid this situation if at all possible but in this case you have been so misinformed I would feel guilty if I were to learn you were following her potentially fatal advice. Maybe you don't even have PBC? This doctor appears to have such little knowledge. I can only hope she has misdiagnosed you.
National Digestive Diseases Information Clearinghouse (NDDIC)
A liver transplant is the only treatment that will cure primary biliary cirrhosis. A liver transplant is considered when complications cannot be controlled by treatment. A liver transplant is a major operation in which the diseased liver is removed and replaced with a healthy one from an organ donor. A team of health professionals determines the risks and benefits of the procedure for each patient. Survival rates have improved over the past several years because of drugs that suppress the immune system and keep it from attack-ing and damaging the new liver.
The number of people who need a liver transplant far exceeds the number of available organs. A person needing a transplant must go through a complicated evaluation process before being added to a long transplant waiting list. Generally, organs are given to people with the best chance of living the longest after a transplant. Survival after a transplant requires intensive follow-up and cooperation on the part of the patient and caregiver."
Orphanet Journal of Rare Diseases 2008, 3:1 doi:10.1186/1750-1172-3-1
"Primary biliary cirrhosis (PBC) is a chronic and slowly progressive cholestatic liver disease of autoimmune etiology characterized by injury of the intrahepatic bile ducts that may eventually lead to liver failure. Affected individuals are usually in their fifth to seventh decades of life at time of diagnosis, and 90% are women. Annual incidence is estimated between 0.7 and 49 cases per million-population and prevalence between 6.7 and 940 cases per million-population (depending on age and sex). The majority of patients are asymptomatic at diagnosis, however, some patients present with symptoms of fatigue and/or pruritus. Patients may even present with ascites, hepatic encephalopathy and/or esophageal variceal hemorrhage. PBC is associated with other autoimmune diseases such as Sjogren's syndrome, scleroderma, Raynaud's phenomenon and CREST syndrome and is regarded as an organ specific autoimmune disease. Genetic susceptibility as a predisposing factor for PBC has been suggested. Environmental factors may have potential causative role (infection, chemicals, smoking). Diagnosis is based on a combination of clinical features, abnormal liver biochemical pattern in a cholestatic picture persisting for more than six months and presence of detectable antimitochondrial antibodies (AMA) in serum. All AMA negative patients with cholestatic liver disease should be carefully evaluated with cholangiography and liver biopsy. Ursodeoxycholic acid (UDCA) is the only currently known medication that can slow the disease progression. Patients, particularly those who start UDCA treatment at early-stage disease and who respond in terms of improvement of the liver biochemistry, have a good prognosis. Liver transplantation is usually an option for patients with liver failure and the outcome is 70% survival at 7 years. Recently, animal models have been discovered that may provide a new insight into the pathogenesis of this disease and facilitate appreciation for novel treatment in PBC."
"Patients with untreated chronic hepatitis C have the potential to develop cirrhosis, liver failure, hepatocellular cancer, and death. The decision whether to treat hepatitis C virus (HCV) infection should take into account both potential risks and potential benefits. Although this decision can be difficult in an individual patient, a consensus now exists among experts that three key factors that should weigh heavily in the decision of whether or not to initiate therapy: (1) the likelihood of eradicating HCV infection based on baseline factors; (2) the need for treatment based on the stage and rate of progression of liver disease, and (3) the treatment efficacy and risks associated with treatment."
Thanks for getting me fired up again....I cannot let her placate me....she is a General Practitioner whose referral I need and have gotten for the Hep Clinic...she admitted yesterday that she listed PBC without really having a reason (?!) then in the same breath, smiled "You have nothing to worry about (smile, nod), your virus is too low to treat (smile, nod), make some lifestyle changes (smile, nod) and you'll e be fine....then sweeps out of the office (good lord!) I told her I wanted the copies of my RNA report Monday...and will be after the referral office on Monday as well...
Thank you for the links Hector...I have copied them out and taking them with me....all of ya'll emphatic responses are so greatly appreciated...ya'll have been a blessing, I'll have more time to sit on the phone checking out those #'s Hector as well (last time I called, it went to voice mail) and since I'm a teacher, I have one more week of break left to work on this....Thanks again EVERYONE :) for being my backbone to stand up to her (I am on a payment type of program that limits my options for providers...but second rate care shouldn't be the norm!)
Based on your posts in this forum and the Cirrhosis Forum I wholeheartedly agree with everything that has been said. The longer you are around and read posts or hear stories as well as have your own experiences you are going to see many people in medicine are not very well informed when it comes to basic information when it comes to Hepatitis C.
On the brighter side if she is just your GP and all you needed was the referral (which you now have) then half your battle is over - *unless* this doctor in some way will be in a position where she has to coordinate your care.
It is a good thing you are a teacher since if your GP is going to be in the loop, as it were, you might want to keep your print outs handy so you can enlighten her..... and perhaps even prevent her from misinforming another patient. Plus, do not be surprised if there are others in medicine you encounter along the way who do not know much about Hepatitis C. This is an illness where you have to learn a lot not only to be your own advocate but to make sure your medical professionals have current & accurate information :)
As others pointed out your VL can fluctuate wildly and the number itself is often an indicator to how you are responding to Hepatitis C medication.
The VA web site in a section called "Treatment Decisions" under the heading "How successful is treatment?" It says: "Having a low viral load prior to treatment increases the chance of treatment success." (that's a new one for me). http://www.hepatitis.va.gov/patient/treat/decisions-single-page.asp
Another site (HepMag):
"Though the HCV viral load test cannot determine if or when someone with hepatitis C will develop cirrhosis or liver failure, it can help determine how likely it is someone will respond to treatment. As a rule of thumb, the lower the HCV viral load, the better someone’s chances of responding to HCV treatment.
HCV viral load testing is often used during treatment to determine how well therapy is working."
It never surprises me, to hear of another misinformed Primary Care Physician, who just cant admit that they havent taken the time out, to research what's going on these days, concerning the latest,in Hep C treatment.
What's going on these days, in terms of amazing advancements in Hep C cure meds, is surely something that would be of interest to all Doctors, I would think.
But I also have to admit I knew little to nothing about Hep C and livers, myself, and I have known I carry the virus for over 20 yrs.
What I see happening, with myself in the past, and with other currently, is a tendency to latch onto misconceptions, concering the nature of the disease. For instance, I thought the Interferon shots were with very long huge needles, plunged at least 2 inches into the stomach. I just made the image up in my head, and stuck to it, avoiding a biopsy and Treatment!
I ended up having a biopsy last year, I was stage 2 fibrosis, and treated for 7 months, and I am now 4 months post treatment, still clear of the Hep C virus~ good luck
yesterday I finally got to speak to the Hep C clinic which verified that my 2nd RNA test came back "undetected"....so now I can concentrate on my cirrhosis now...I am to expect a call on Monday to set an appt to see a hepatologist :) This has been a slow process but I read all the posts so at least I'm getting my "education" and will be ready for that meeting....thanks to everyone for all the advice and support...ya'll lhave been the only "sane" part of this journey
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