Why hasn't PCT returned in 17 years without treatment? Doesn't a sonogram show cirrhosis?
Finally saw the Hepatologist, and he has ordered the the tests for viral load and geno type. He say's he "believes" I have Hep C and cirrhosis, (needless to say this was not good news) I am assuming his conclusion was from physical exam and looking at the low platelet count. He also pointed out "red palms" he thought I had (I am not convinced since my palms do not look that red, as I am a natural red head. I did tell the Hepatologist that I had Porphyria Cutanea tarde back in 92-93 and had phlebotomy then to cure it, it has not returned. He questioned me a couple of times if it had returned or not, and I told him no. My GP also had asked that question, both seemed a little amazed that it has not come back in all this time. Does anyone have an answer to this? I remember when diagnosed by the dermatologist and going thru phlebotomy I had been warned not to drink alcohol again, he thought that was what brought it on, for the most part (a glass of wine at Christmas) I have complied with that. Maybe alcohol sets it off?
I have been researching this site since first learning of my HCV infection and have learned quite a bit. I am still panicking a lot, like this week waiting for blood results, viral load and geno type. Now I find out it takes more than a week to get these tests back. Hepatologist has also run a Ferritin level, though the GP had done an iron panel and said that it was "a tad high". Hepatologist also said that phlebotomy could be helpful in treatment of HCV. He has also ordered a CT scan and a liver biopsy. I have already had a sonogram, and this showed nothing abnormal, wouldn't the sonogram show cirrhosis? The Hepatologist said that if it is cirrhosis we need to start treatment. Guess that takes the option of waiting for better drugs to come along out of the equation!
A year ago all bloodwork was in normal limits, it is this year that suddenly the ALT, AST, low platelet count, and GGT were off. Sadly, that low platelet count can be an indication of cirrhosis, I am a bit angry that the dermatologist back then did not suggest a HCV test, Hepatologist said they have since learned that there is usually a direct relationship to HCV and PCT. I cannot believe the doctors I have mentioned having PCT too, that have not considered it a red flag. I actually have found that mentioning sends them to the medical books to look it up, and this includes the GI/hematologist that found the enzymes off back in October of last year. I am hoping that now all dermatologist's and especially GI doc's are alerted that PCT diagnosis should follow with a HCV test!
I am so thankful to this site, I have learned so much, and when I finally got to the Hepatologist I was able to converse with him as an individual who knew something about the disease. I wish I had known what I know now about liver disease back in 1992.
I have PCT. That is how I found out I have HCV. Fortunately, my dermatologist did make the connection between PCT and HCV otherwise, I would of never known. PCT all by itself can cause serious damage to the liver and I figure I must have had some symptoms at least a year prior to diagnosis because the skin on my hands tore so easily. I did not have any blisters until several months prior to seeing the dermatologist. Perhaps the PCT contributed to advancing my liver disease during that year as I am a late stage 3.
I had 3 months of phlebotomy treatment prior to starting treatment. My ferritin was high but biopsy showed no accumulation of iron in the liver. I am currently in treatment and the PCT symptoms have never returned except for occastional milia. PCT is a chronic disorder, however, it usually subsides after phlebotomy or low dose chloroquine administration. My hepatologists words were "treat the HCV and the PCT will go away". So far, that has been correct.
Advise you get a liver biopsy. That is the only accurate method for determining the health of your liver. Sonogram will show abnormalities of the liver but can't detect with any accuracy what stage of liver disease you have. Once they know your genotype, viral load and degree of liver damage you and your doctor can determine the best course of action to take. Stage 3 liver disease and above should treat immediately. Actually, I feel stage 2 should take treatment under serious consideration as well but many disagree with that. This disease is slow moving but you never know when the transition from stage 2 to stage 3 or stage 3 to stage 4 will occur.
Below is a list which explains the different stages of liver disease.
Good Luck and I hope things go smoothly for you. You will need patience to get through all the testing and a lot of what we go through is a hurry up and wait process.
Stage 1 none or mild peri-portal fibrosis
Stage 2 peri-portal fibrosis with/without extension and portal-portal bridging
Stage 3 portal-central bridges but no nodular formation
Stage 4 probable or definite cirrhosis
Please try to be patient. You will get your results soon and then you and your Hepatologist can determine what you want to do based on them.
Normally it takes many decades for HCV to damage your liver to the degree that you have cirrhosis. Usually 30-40 years.
Isn't PCT known to cause liver damage? From Merck's Online Medical Library "Porphyria cutanea tarda has several common precipitating factors. These factors include excess iron in the liver, moderate or heavy alcohol use, taking estrogens, and infection with hepatitis C virus.
...Liver damage usually occurs, and cirrhosis and even liver cancer may eventually develop."
A sonogram does not show cirrhosis. It show blood flow. It is also used to look for tumors such as HCC (liver cancer). If you had advanced cirrhosis it would also show excess fluids around your liver called ascities. Blood tests are a better indication of cirrhosis. The true test is a biopsy plus these other indicators. By analyzing all of these factors a clear picture will emerge. Platelet count, bilirubin, albumin, PT or INR can all indicate cirrhosis. And there are a number of other tests that can confirm the diagnosis. The liver has a profound effect on many of the body's systems once it has become damage to a certain degree.
Meanwhile I would trust your Hepatologist. His/her expertise is the liver. Diagnosing HCV and liver disease is their bread and butter. This is not the expertise of a primary physician or dermatologist. And any good doctor will tell you this. When you get your results you can post them here and get feedback from other HCV sufferers.
When you see your Hepatologist to get your results I would suggest writing down questions beforehand for your doctor when you next see him/her. Ask what the results mean. Ask them what your viral load means. What your genotype means as far as the odds of the treatment being successful. When you get your biopsy results ask them what "grade" means, what "stage" means. And write their answers down. With these answers from your doctor people on this forum will be better able to help you and comment and expand on what your doctor said..
Best of luck.
Let us know what you learn about your condition.
Thank both of you for replying to my post with knowledgable info!
Heard back from the Hepatologist last night with the PCR and geno type, all additional test's (ig: Ferritin level, Lipid panel, Hbv, creatine, bun, hemocrotosis) were all normal.
The Viral load numbers were 861,000 iu/ml. I am a geno-type 1a. I have looked at Janis website to figure out if this is high nor not, does this fall into the "low range" or do I need to multiply by something?
I was told I needed to get a hepatitis B vaccination the next time I come into the office. He also inquired as to when I was having the CT scan and I told him this coming Monday. He said depending on the outcome of the CT scan, whether it show cirrhosis or not, if it does than I do not need the liver biopsy, if it doesn't I will. Can you shed some light on this?? If you have cirrhosis why would you "NOT" need a liver biopsy?
I made mention that he told me "he thought" I had cirrhosis,and if that was the case we should start treatment, and he replied that he had based this on my low platelet count only.
This is just a hunch, but I have the feeling that once he had former test's including the sonogram and all previous lab work, plus good results on all the other kidney heart tests that maybe he is taking a second look here and might not be so quick to jump to a conclusion of cirrhosis.
Question: "Is a low platelet count always indicative of cirrhosis, are there heppers out there that have had blood work come back with low platelets and not been diagnosed with cirrhosis?"
below detection limit of bDNA test
average viral load at 3,200,000 eq/ml
"I was told I needed to get a hepatitis B vaccination the next time I come into the office"
"He said depending on the outcome of the CT scan, whether it show cirrhosis or not, if it does than I do not need the liver biopsy, if it doesn't I will.
I had a CT scan prior to bx and my hepatologist still ordered a bx. The technician performing the ultra sound during my liver biopsy said he didn't understand why my doctor ordered a biopsy because the CT scan of my liver was unremarkable. In other words, it looked normal. Come to find out biopsy showed advanced stage 3 liver damage. You've had hepc for at least 17 years you know of. I highly recommend you get a biopsy considering you are a geno 1. Biopsy is the gold standard used to determine what the health of your liver is.
Low platelets are one indication of cirrhosis but as Hector said: Platelet count, bilirubin, albumin, PT or INR can all indicate cirrhosis.
Really encourage you to push for biopsy. I am very surprised a Hepatologist would tell you he will or will not recommend biopsy based on a CT scan. Do you really trust this doctor? I wouldn't. Especially when he used the phrase "he thought" regarding cirrhosis.
Can you shed some light on this?? If you have cirrhosis why would you "NOT" need a liver biopsy? "
There would be no need to get the biopsy if you have cirrhosis because it will already have been proven that you are already at stage 4. We have the biopsy to determine which stage we are 1 - 4 but 4 being the highest - you would already know that you were there.
891,000 is not really very high regardless of what any chart says - comparing to people who start out in the 10s of millions 891k is closer to the 200k. I wouldn't worry that much about the VL number because basically what we look at VL for is during treatment to see how we are responding.
I started at 568,000 - considerably low. Still even starting on the lower end of the scale I had a much harder time clearing the virus and eventually had to do 72 weeks of treatment vs. the typical 48. Then I've seen people who start in the 10s of millions clear by week 4 and have no trouble at all.
Just try to relax and take things one at a time - that is all you can do. This disease will force you to learn patience in way you never thought that you could before - take it from us.
But it's worth it. I've been cured for over two years and never have to look back at the disease and wonder again. Do what you have to do but try not to stress too much. It doesn't accomplish a darn thing in the end.
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