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Platelet count
Any experts (or otherwise) here on platelet count? Mine was checked in 2005, before I was diagnosed with hepatitis C, and was then 192,00. It's been monitored every two weeks, along with other blood tests, ever since I was diagnosed HCV+ three months ago: it fluctuated between 150,000 and 160,000 in the first few blood tests. But it has now fallen down to 134,000, in the latest blood test a week ago.
I've read that 150,000 is the lower limit of normal, so I guess I'm now below normal platelet count. But how bad is that? I've also read that most trials won't take people with below 150,000.
I'm not on tx yet. Just had a biopsy two days ago, waiting for the results.
Anyone have any info about this? Why would my platelet count be dropping? Could it be due to a change in diet (I'm on a careful, livert-friendly diet)? Is it an indication of accelerating liver disease? Should I be worried?
Mike
I've read that 150,000 is the lower limit of normal, so I guess I'm now below normal platelet count. But how bad is that? I've also read that most trials won't take people with below 150,000.
I'm not on tx yet. Just had a biopsy two days ago, waiting for the results.
Anyone have any info about this? Why would my platelet count be dropping? Could it be due to a change in diet (I'm on a careful, livert-friendly diet)? Is it an indication of accelerating liver disease? Should I be worried?
Mike
I think you are right about log . I calculated wrongly.As far as the dose of peg is concerned it is 1.5 mg /kg weekly and not 180 for everyone. I was 65 kg when I started and took 100 mg vial and it is available in 50 and 80 mg also.I read on this forum somebody else also complained about fixed dose.Please check the manufacturer's info.
BTW, Donot lose heart. Celebrate your b'day. You have many more to come. I also have stage 3 and doing fine. Relapsed and not planning tx at present.
Best wishes. You will be all right.
BTW, Donot lose heart. Celebrate your b'day. You have many more to come. I also have stage 3 and doing fine. Relapsed and not planning tx at present.
Best wishes. You will be all right.
Each log is reducing the initial count by taking away a zero. So if it were 2 logs it would be 12,900. 1 log drop makes it 129,000. I dropped a little below 1 log but not close to 2 yet. But keep in mind I still have 3 more weeks to go and I am going to ask for neupogen so as I'll just have to wait and see. Thanks for the dosage info about neupogen. It's a relief to know if I do have to buy it maybe it won't be so costly. I did have high ferritin but got that down before starting tx. Liver damage fairly significant at stage 3 and I'm not going to tell you how old I am!!!! Over forty sounds good. As a matter of fact my birthday is Friday and I don't even want to celebrate them anymore. I'm a little woman and maybe not having extra weight effects how tx reacts in the blood as well. It's strange that big guys and gals get the same dosage of peg as little ones. Somehow that just doesn't seem right but the standard is180mcg for everyone.
Trinity
Trinity
Trinity , why did you say you had just one log drop. To me from 1,290,000 to 100,000. is a 2 log drop already. Check it out.As far as low ANC is concerned I regularly took Neupogen two time a week for many months to be able to continue with peg. There is no problem. And I took only 75 units from the 300 that comes in the vial so one injection lasted 4 doses
mike, there are so many causes of poor response like ---cirrosis to begin with, raised iron/ferritin, poor platelets to begin with, being male, being above forty. Also check you copper levels and alfa feto protein.
mike, there are so many causes of poor response like ---cirrosis to begin with, raised iron/ferritin, poor platelets to begin with, being male, being above forty. Also check you copper levels and alfa feto protein.
If you don't make it this time, there will be another chance. And there are new therapeutic drugs coming out. I believe that's true, despite everything. The world isn't going to sit back and let the drug companies decide the fate of so many people.
But whatever the outcome of your tx, you should insist on knowing why you are responding the way you are. That information is important to everyone. We're all our own little private trials, and we ought to try and derive as much future benefit from our therapies as possible. Don't you think?
And insisting on knowing why things are happening forces the MDs to be more responsible. If we don't ask them, we let them off the hook.
But whatever the outcome of your tx, you should insist on knowing why you are responding the way you are. That information is important to everyone. We're all our own little private trials, and we ought to try and derive as much future benefit from our therapies as possible. Don't you think?
And insisting on knowing why things are happening forces the MDs to be more responsible. If we don't ask them, we let them off the hook.
Thanks my friend but not to worry. If it's meant to be than it will be. If ANC drops below 500 I'll probably tell him to write me a script for Neupogen which raises the levels and costs about $380.00 or more a pop. I'll have to pay for it out of pocket but that will get me through the next few weeks until I find out if I dropped 2 logs. No use in continuing tx if I don't drop the 2 logs because that is a sure indicator I'm not responding and with each passing week the chance of SVR is greatly diminished. It a funny thing because in my heart or hearts I've always felt like I would not have a favorable outcome. Just a gut feeling. I'm not a pessimist and my attitude has been pretty good throughout but I am a realist and I'm not going to kid myself by thinking I'll be one of the lucky ones if the tests don't indicate so. It's just a wait and see game right now and you're right about the doctors in this country. Many lack compassion and it's all about the bottom dollar. It's like the God complex kicks in if you question their motives or try to dispute their decisions. It's my body I'm putting all these poisons into so that gives me the right to question everything. You have certainly tried to educate yourself regarding many aspects of the disease as well as the treatment and this will be very much to your advantage when considering or starting treatment. Just a great bunch of people on this forum who have taught and guided me through many difficult times....for that I am eternally grateful whether I succeed in tx or not.
Trinity
Trinity
I can't tell you how sorry I am to hear that you're not responding fully to the medication yet. Do you have some insight into why that's so? It may be useful to you later on.
In my humble opinion we need to find out, either by demanding answers from our care providers or doing the research ourselves, exactly what's going on while we're on medication. Before, too.
As to your not having much to lose by sticking to the full dose of peg-IFN, are you certain about that? Have you investigated all the consequences of low ANC? There are worse things than re-treating, I think.
The doctors at my hospital, and in general here in Argentina and the rest of Latin America, are more humane than in the U.S. Their souls have not yet become corrupted by undeserved wealth. They're closer socially to the people they treat, and that allows them to treat them as they would like to be treated themselves, which is important. I don't say it's perfect here. There's a lot of crowding, and long waits. But the medical personnel is human, and that makes an awful lot of difference. They're also not caught up in the research and publications game. All their time goes to their patients, which is no longer true in the States.
If you don't like your doc, couldn't you find a better one? Like you say, a good relationship with the doctor is pretty important when you are doing dangerous chemotherapy. And even beforehand, when you are diagnosing and making decisions about if and when to treat.
I'm worried about you, Trin.
Mike
In my humble opinion we need to find out, either by demanding answers from our care providers or doing the research ourselves, exactly what's going on while we're on medication. Before, too.
As to your not having much to lose by sticking to the full dose of peg-IFN, are you certain about that? Have you investigated all the consequences of low ANC? There are worse things than re-treating, I think.
The doctors at my hospital, and in general here in Argentina and the rest of Latin America, are more humane than in the U.S. Their souls have not yet become corrupted by undeserved wealth. They're closer socially to the people they treat, and that allows them to treat them as they would like to be treated themselves, which is important. I don't say it's perfect here. There's a lot of crowding, and long waits. But the medical personnel is human, and that makes an awful lot of difference. They're also not caught up in the research and publications game. All their time goes to their patients, which is no longer true in the States.
If you don't like your doc, couldn't you find a better one? Like you say, a good relationship with the doctor is pretty important when you are doing dangerous chemotherapy. And even beforehand, when you are diagnosing and making decisions about if and when to treat.
I'm worried about you, Trin.
Mike
Hi Mike,
PCT is gone or at least I hope so. ANC is your Absolute Neutrophil Count, simply stated it's the cumulative total of white blood cells or something real close to that description. Lots of people on tx have low white blood cell counts but when they get under 500 it starts to be a concern. Many aggresive doctors will continue tx with no peg reduction until they get to around 300-350. My doc is very conservative so that's why he reduced my peg when I hit 600. No, I should not have taken the full dose but I've only got 3 more weeks to go before the 12 wk mark so I figured what the hell. I had a 6 wk PCR done and my vl was 100,000. Using the initial count of 1,290,000 back in October I really only dropped one long. I'm thinking like I'm a real slow responder or I may not even hit the 2 log drop by 12 wks so with my platelets and white blood cells tanking I just didn't think I had that much to lose. I get my blood drawn tomorrow and back to the doc on Thursday so we'll see. My doc is a knucklehead and you mentioned standard of care which also applies to our doctors and mine isn't even close to "golden standard". I do believe I could intimidate him but I don't even like him enough to make the effort!! I also dislike the entire medical scene but had to try to eradicate this demon so I jumped on the train and away I went. I hope you have a good relationship with your doctor because it gives you more confidence and helps you maintain a better attitude. So that is my dilema for now and will keep you posted as my world turns.
Trinty
PCT is gone or at least I hope so. ANC is your Absolute Neutrophil Count, simply stated it's the cumulative total of white blood cells or something real close to that description. Lots of people on tx have low white blood cell counts but when they get under 500 it starts to be a concern. Many aggresive doctors will continue tx with no peg reduction until they get to around 300-350. My doc is very conservative so that's why he reduced my peg when I hit 600. No, I should not have taken the full dose but I've only got 3 more weeks to go before the 12 wk mark so I figured what the hell. I had a 6 wk PCR done and my vl was 100,000. Using the initial count of 1,290,000 back in October I really only dropped one long. I'm thinking like I'm a real slow responder or I may not even hit the 2 log drop by 12 wks so with my platelets and white blood cells tanking I just didn't think I had that much to lose. I get my blood drawn tomorrow and back to the doc on Thursday so we'll see. My doc is a knucklehead and you mentioned standard of care which also applies to our doctors and mine isn't even close to "golden standard". I do believe I could intimidate him but I don't even like him enough to make the effort!! I also dislike the entire medical scene but had to try to eradicate this demon so I jumped on the train and away I went. I hope you have a good relationship with your doctor because it gives you more confidence and helps you maintain a better attitude. So that is my dilema for now and will keep you posted as my world turns.
Trinty
Hi, one of my favorite phlebotomy twins. How's your PCT?
What the heck is ANC, Trin? (I can't remember all these acronyms. The memory banks in my cerebrum are overloaded.) Whatever it is, do you have any sort of chart like the one Hector posted for Thrombocytopenia, showing the normal and abnormal ranges for it?
Do you get to decide what dose of interferon you're gonna take? What did you do, scare your MD so he doesn't give you any lip? Got him trained, huh?
After reading all these awful bios about what the meds do to you, all I can say is that this so-called "Standard Of Care" sounds like garbage. Aren't ribavirin and interferon some chemicals that the drug companies came up with when they were looking for a cure for HIV, and now that there aren't many new HIV victims (at least of the paying, first-world variety), they're selling this stuff to us hepatitis victims? That's the way it looks to me, frankly. I mean, how can they call something that ruins your blood chemistry "Standard Of Care"? That's just jargon, of the PR type. It gets my hackles up, like every time someone says "Biopsy is the gold standard of liver tests". The next time I hear that from an MD that hasn't read an article in Hepatology on non-invasive liver tests for years, I'm gonna let out one of my special IBS "clouds" in the guy's face.
But I'm prejudiced. I hate drug companies and most MDs from way back. :¬]
Mike
What the heck is ANC, Trin? (I can't remember all these acronyms. The memory banks in my cerebrum are overloaded.) Whatever it is, do you have any sort of chart like the one Hector posted for Thrombocytopenia, showing the normal and abnormal ranges for it?
Do you get to decide what dose of interferon you're gonna take? What did you do, scare your MD so he doesn't give you any lip? Got him trained, huh?
After reading all these awful bios about what the meds do to you, all I can say is that this so-called "Standard Of Care" sounds like garbage. Aren't ribavirin and interferon some chemicals that the drug companies came up with when they were looking for a cure for HIV, and now that there aren't many new HIV victims (at least of the paying, first-world variety), they're selling this stuff to us hepatitis victims? That's the way it looks to me, frankly. I mean, how can they call something that ruins your blood chemistry "Standard Of Care"? That's just jargon, of the PR type. It gets my hackles up, like every time someone says "Biopsy is the gold standard of liver tests". The next time I hear that from an MD that hasn't read an article in Hepatology on non-invasive liver tests for years, I'm gonna let out one of my special IBS "clouds" in the guy's face.
But I'm prejudiced. I hate drug companies and most MDs from way back. :¬]
Mike
Hi, Hector. Thanks for all the useful info. It's a big help having you here.
Yeah, I broke down and had the biopsy. No big deal as it turned out, but I'm still against it. There's gotta be something wrong with sticking steel needles into sick livers, in my humble opinion. But what do I know? :¬]
I hope you're right about the lower platelet count being just a one-off. But the steady downward progression of the count isn't a good sign, I don't think. I'll ask them to do another count in a coupla weeks.
I've stppped taking any sort of pain killers since I was diagnosed. I'm taking Lorazepan for sleeping and Miopropan for my IBS, but I was taking them when the count was at 160k. I've changed my diet a lot, though. I'm doing a strict healthfood diet since diagnosed: oatmeal & honey, raisins and almonds, brown rice with fish or chicken, that kind of stuff. And I started doing flax seed oil a few weeks ago to beef up my polyunsaturated fatty acids. That's it, so far.
No idea how long I've had the virus. My gastro thinks I got infected from a blood transfusion when I was 18, but that was 46 years ago. It doesn't seem realistic that I've been infected that long with no overt symptoms, does it? I think it's more likely I got infected from dirty dental instruments or re-used anesthetic vials, since I go to the dentist a whole lot (bad teeth).
The cirrhosis connection with platelets is what has me worried. But the ecodoppler they did on me two weeks ago showed no portal hypertension and the endoscopy showed no varices, so if I've got cirrhosis it must be in a very early stage, don't you think?
I haven't been checked for enlarged spleen, at least not by CT. I've been examined physically by around five hepatologists and gastroenterologists, however, and they all said they couldn't feel anything unusual. But I think they were just feeling my liver, not my spleen. Should I ask them to check the spleen the next time I see one of them?
With transaminases in the high 40s or low 50s, serum ferritin around 300, and total bilirubin around 2, I'll be surprised if I have under stage 3 fibrosis, at the least. But maybe I don't have cirrhosis yet. I hope the biopsy gives a clear answer.
I'll keep posting when there's anything new, and look forward to hearing your and others' take on the biopsy results when they come out in mid-June (my hospital lab is really slow).
Thanks again for all your help, Hector.
Mike
Yeah, I broke down and had the biopsy. No big deal as it turned out, but I'm still against it. There's gotta be something wrong with sticking steel needles into sick livers, in my humble opinion. But what do I know? :¬]
I hope you're right about the lower platelet count being just a one-off. But the steady downward progression of the count isn't a good sign, I don't think. I'll ask them to do another count in a coupla weeks.
I've stppped taking any sort of pain killers since I was diagnosed. I'm taking Lorazepan for sleeping and Miopropan for my IBS, but I was taking them when the count was at 160k. I've changed my diet a lot, though. I'm doing a strict healthfood diet since diagnosed: oatmeal & honey, raisins and almonds, brown rice with fish or chicken, that kind of stuff. And I started doing flax seed oil a few weeks ago to beef up my polyunsaturated fatty acids. That's it, so far.
No idea how long I've had the virus. My gastro thinks I got infected from a blood transfusion when I was 18, but that was 46 years ago. It doesn't seem realistic that I've been infected that long with no overt symptoms, does it? I think it's more likely I got infected from dirty dental instruments or re-used anesthetic vials, since I go to the dentist a whole lot (bad teeth).
The cirrhosis connection with platelets is what has me worried. But the ecodoppler they did on me two weeks ago showed no portal hypertension and the endoscopy showed no varices, so if I've got cirrhosis it must be in a very early stage, don't you think?
I haven't been checked for enlarged spleen, at least not by CT. I've been examined physically by around five hepatologists and gastroenterologists, however, and they all said they couldn't feel anything unusual. But I think they were just feeling my liver, not my spleen. Should I ask them to check the spleen the next time I see one of them?
With transaminases in the high 40s or low 50s, serum ferritin around 300, and total bilirubin around 2, I'll be surprised if I have under stage 3 fibrosis, at the least. But maybe I don't have cirrhosis yet. I hope the biopsy gives a clear answer.
I'll keep posting when there's anything new, and look forward to hearing your and others' take on the biopsy results when they come out in mid-June (my hospital lab is really slow).
Thanks again for all your help, Hector.
Mike
Most of my other blood test stuff has been normal or only slightly elevated, like transaminases in the 40s. The only other consistently high result has been serum ferretin in the high 200s/low 300s.
Ecodoppler ten days agpo showed no portal hypertension, and en endoscopy showed no varices.
Biopsy results mid-June.
Mike
Ecodoppler ten days agpo showed no portal hypertension, and en endoscopy showed no varices.
Biopsy results mid-June.
Mike
my base line platelets were 144000. They fluctuated mostly around 80000 and 120000 during TX .I had to miss only one dose when they felt to 48000. Do you think I had cirrosis to begin wit hand that is why I failed? My serum albumin and prothrombin time are and were normal.
Mike
my platelets were 187 back in 8/07. Down to 167 in 10/07. B/4 starting tx 137 which I attribute to all of those phlebotomies I had. 2 wks into tx 113 and 6 wks 88. Doc is not so much concerned about platelets as he is my ANC which dropped to 600 2 wks ago and 700 last week. I did a reduced dosage of peg 2 wks ago (135) and was supposed to do another yesterday but I went for it and full dosed. Hell, I figure if I'm going down might as well go in a blaze of glory. I wouldn't worry too much about your count right now, little low but not too bad. As Hector said, it's that wonderful peg that sends our numbers downstairs to the basement
Hang tough my friend
Trinity
my platelets were 187 back in 8/07. Down to 167 in 10/07. B/4 starting tx 137 which I attribute to all of those phlebotomies I had. 2 wks into tx 113 and 6 wks 88. Doc is not so much concerned about platelets as he is my ANC which dropped to 600 2 wks ago and 700 last week. I did a reduced dosage of peg 2 wks ago (135) and was supposed to do another yesterday but I went for it and full dosed. Hell, I figure if I'm going down might as well go in a blaze of glory. I wouldn't worry too much about your count right now, little low but not too bad. As Hector said, it's that wonderful peg that sends our numbers downstairs to the basement
Hang tough my friend
Trinity
Hi Mike.
I'm not an expert on platelet count, but have lots of experience with low platelet counts. Unfortunately...
* First and most importantly: Your biopsy result will tell the story if there is anything to be concerned about. I'm so glad you had it done recently and will know soon!!!
* Second: 134,000 is not that low!!! Below normal yes, but not by much.
Remember all blood test vary to some degree over time! The last test could be just a fluke from your normal range. So don't worry yourself over something that may turn out to be nothing. Okay?
Are you taking aspirin? Anticoagulants? These can lower your platelets. Maybe something with your diet? Are you taking supplements too?
How long have you had HCV? Do you know?
I hesatate to mention this...please take this with a BIG grain of salt...OKAY???
Low platelets (Thrombocytopenia) (usually much lower then your platelet count) can be a sign of cirrhosis. Thrombocytopenia is commonly seen as a consequence of portal hypertension and enlarged spleen (hypersplenism). Two symptoms of cirrhosis. Stage 4 liver disease. Remember to progress to cirrhosis it usually takes 30-40 years of injury to the liver by HCV. Do you have any other signs of advance liver disease? Have you been checked for an enlarged spleen? A good doctor can put his hands on you and usually feel if it is enlarged. Have you had a liver/spleen triple phase CT? It can be seen by the scan also.
Mike, I have cirrhosis, portal hypertension and an enlarged spleen. My platelets are normally around 70,000. (Which was how I learned I have cirrhosis. Bummer!!!) Much lower than your count my friend. During treatment I went down to 26,000. Love that Peg! Not! Yikes! But I'm doing okay. Living with my cirrhosis and HCV so it's not the end of the world.
GRADING OF THROMBOCYTOPENIA
Normal: 150,000 to 400,000 platelets/mm3
Mild: 50,000 to 150,000 platelets/mm3
Moderate: 25,000 to 50,000 platelets/mm3
Severe: < 25,000 platelets/mm3
Please try not to worry! As I said, the biopsy results will tell you what is really going on!!! If anything!!!
Let us know what biopsy says when you get the results. Stage and degree of inflammation. And we will take it from there.
Take care buddy!
Hector
I'm not an expert on platelet count, but have lots of experience with low platelet counts. Unfortunately...
* First and most importantly: Your biopsy result will tell the story if there is anything to be concerned about. I'm so glad you had it done recently and will know soon!!!
* Second: 134,000 is not that low!!! Below normal yes, but not by much.
Remember all blood test vary to some degree over time! The last test could be just a fluke from your normal range. So don't worry yourself over something that may turn out to be nothing. Okay?
Are you taking aspirin? Anticoagulants? These can lower your platelets. Maybe something with your diet? Are you taking supplements too?
How long have you had HCV? Do you know?
I hesatate to mention this...please take this with a BIG grain of salt...OKAY???
Low platelets (Thrombocytopenia) (usually much lower then your platelet count) can be a sign of cirrhosis. Thrombocytopenia is commonly seen as a consequence of portal hypertension and enlarged spleen (hypersplenism). Two symptoms of cirrhosis. Stage 4 liver disease. Remember to progress to cirrhosis it usually takes 30-40 years of injury to the liver by HCV. Do you have any other signs of advance liver disease? Have you been checked for an enlarged spleen? A good doctor can put his hands on you and usually feel if it is enlarged. Have you had a liver/spleen triple phase CT? It can be seen by the scan also.
Mike, I have cirrhosis, portal hypertension and an enlarged spleen. My platelets are normally around 70,000. (Which was how I learned I have cirrhosis. Bummer!!!) Much lower than your count my friend. During treatment I went down to 26,000. Love that Peg! Not! Yikes! But I'm doing okay. Living with my cirrhosis and HCV so it's not the end of the world.
GRADING OF THROMBOCYTOPENIA
Normal: 150,000 to 400,000 platelets/mm3
Mild: 50,000 to 150,000 platelets/mm3
Moderate: 25,000 to 50,000 platelets/mm3
Severe: < 25,000 platelets/mm3
Please try not to worry! As I said, the biopsy results will tell you what is really going on!!! If anything!!!
Let us know what biopsy says when you get the results. Stage and degree of inflammation. And we will take it from there.
Take care buddy!
Hector
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