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High ferritin 1224
Looking for help about my newly discovered high ferritin level of 1224. As far as I know, it was normal before tx.
Dr. Dieterich posted about high ferritin and said (what else?) not to sweat it. HR also posted about it.
Neither mentioned my main concern, whether a ferritin level of 1224 reduces my chance of SVR.
I think GoofyDad, AlaGirl and Deb mentioned having high ferritin during tx. (Did Trin also have it but before tx?)
My family doctor tested me. The high normal is 200. I was caught off guard about the 1224. I didn't know anything about ferritin-schmerritin but kept telling her not to worry about the crazy numbers, that it's all 'looking great', given the tx. "Neutrophils at 0.8, that's super", I said, "and so are platelets at 70 and ferritin at 1224."
Bit of a lie since I knew zilch about it.
So should I kiss SVR farewell because of ferritin?
Dr. Dieterich posted about high ferritin and said (what else?) not to sweat it. HR also posted about it.
Neither mentioned my main concern, whether a ferritin level of 1224 reduces my chance of SVR.
I think GoofyDad, AlaGirl and Deb mentioned having high ferritin during tx. (Did Trin also have it but before tx?)
My family doctor tested me. The high normal is 200. I was caught off guard about the 1224. I didn't know anything about ferritin-schmerritin but kept telling her not to worry about the crazy numbers, that it's all 'looking great', given the tx. "Neutrophils at 0.8, that's super", I said, "and so are platelets at 70 and ferritin at 1224."
Bit of a lie since I knew zilch about it.
So should I kiss SVR farewell because of ferritin?
"but know your expertise par excellence is in the insulin stuff. "
---------------------
Oh no....I've been type-cast in roles that have to do with IR. That means that it will be difficult for me to get other roles....LOL
Re the fat with Riba.....
I've read some posts about how Vertex is handing people a list of high fat food to eat with each dose of Telaprevir. So that is now high fat 5 times a day. Common sense would tell anybody that's not right....especially when those instructions are not included on the trial's consent. I would love to speak to one of those Study Coordinators about IR.
Co
Thanks, Co. I was so hoping you'd weigh in but know your expertise par excellence is in the insulin stuff. Hope you're well.
I want to say that I'm with you about riba and fat, although you seem to be a lone voice in the wilderness on this forum. I eat food with my riba which probably contains at most 20% fat. I do not focus on vats of fat for riba absorption and in fact reject the idea, thanks to your input and my doctor's. Thirteen more shots to go and whatever happens concerning SVR, at least my arteries won't be more clogged than when I started.
I want to say that I'm with you about riba and fat, although you seem to be a lone voice in the wilderness on this forum. I eat food with my riba which probably contains at most 20% fat. I do not focus on vats of fat for riba absorption and in fact reject the idea, thanks to your input and my doctor's. Thirteen more shots to go and whatever happens concerning SVR, at least my arteries won't be more clogged than when I started.
I agree with CS. But if the palpitations happen again I would mention it to your doctor.
Co
Co
Don´t no anything about ferretin levels other than I´ve heard that it would lessen absorbation of the meds maybe.
My biopsy that was take after first relaps tx, just before my second tx showed no iron deposit in the liver.
And due to that my doc didn´t thought it was any need of checking them values.
You have only 13 more shots to go, awesome your soon be finished.
I my self started to get pain in lungs and in heart about that time.
Now when i read your thoughts I start to wonder if this is a fenomena thats happens to some (many) of us in end of tx.
Maybe we start to worry at this point we aint gonna make it to the finish line.
I did and because of that I didn´t told my nb or doc about this trouble until I had finished tx .
Best wishes don´t worry keep flying high !!
ca
My biopsy that was take after first relaps tx, just before my second tx showed no iron deposit in the liver.
And due to that my doc didn´t thought it was any need of checking them values.
You have only 13 more shots to go, awesome your soon be finished.
I my self started to get pain in lungs and in heart about that time.
Now when i read your thoughts I start to wonder if this is a fenomena thats happens to some (many) of us in end of tx.
Maybe we start to worry at this point we aint gonna make it to the finish line.
I did and because of that I didn´t told my nb or doc about this trouble until I had finished tx .
Best wishes don´t worry keep flying high !!
ca
Just to add something else I've been pretending didn't happen.
Last week my heart was pounding, something it's not done (wk35/48). This topic occasionally comes up on the board but could it be related specifically to high ferritin?
I seriously asked my husband if the furnace (three floors down) was making noise but it was my heart beat. Someone could have counted my heart rate from across the room.
I'm not going to mention it to the docs (ever) because there's no way I'd jeopardize my SOC. I do have mild arrhythmia but it's never been a concern.
Jt and GD, my hemoglobin hasn't been low, like yours. I'm not on rescue drugs and though I had a huge drop in the first month, it never went below 10 .(That's a separate worry, given that below 10 may be associated with SVR!)
Thanks.
Port
Last week my heart was pounding, something it's not done (wk35/48). This topic occasionally comes up on the board but could it be related specifically to high ferritin?
I seriously asked my husband if the furnace (three floors down) was making noise but it was my heart beat. Someone could have counted my heart rate from across the room.
I'm not going to mention it to the docs (ever) because there's no way I'd jeopardize my SOC. I do have mild arrhythmia but it's never been a concern.
Jt and GD, my hemoglobin hasn't been low, like yours. I'm not on rescue drugs and though I had a huge drop in the first month, it never went below 10 .(That's a separate worry, given that below 10 may be associated with SVR!)
Thanks.
Port
Is there anything else about elevated ferritin that would give concern, outside hepatology?
My family doctor expressed such alarm about it that I thought I was a goner.
My hepatologist tends to only look at SVR issues (which may be why he doesn't test for ferritin?) but my family doctor is concerned with the whole picture.
I'm relieved high ferritin has the all-clear in connection to SVR but does anyone know of harm it may do in other ways, like cardiovascular impact, etc.? I don't want to be caught off guard when I see her again this Monday.
Thank you to everyone who replied. I had such a sinking feeling (freaked out?) until I heard back from you.
Being informed is one of the best tools to face forward. Support is the other, so big, honest thanks.
Port
My family doctor expressed such alarm about it that I thought I was a goner.
My hepatologist tends to only look at SVR issues (which may be why he doesn't test for ferritin?) but my family doctor is concerned with the whole picture.
I'm relieved high ferritin has the all-clear in connection to SVR but does anyone know of harm it may do in other ways, like cardiovascular impact, etc.? I don't want to be caught off guard when I see her again this Monday.
Thank you to everyone who replied. I had such a sinking feeling (freaked out?) until I heard back from you.
Being informed is one of the best tools to face forward. Support is the other, so big, honest thanks.
Port
Mine went from normal to about where you are. Went right back after tx. Was no sweat for me. And I SVRed.
I was told by the big head honcho doc that it was a meaningless number at that point. I dunno why it only happens to a few of us. I was very anemic, and stage 4. Maybe that had something to do with it? I dunno.
You'll do fine with it.
I was told by the big head honcho doc that it was a meaningless number at that point. I dunno why it only happens to a few of us. I was very anemic, and stage 4. Maybe that had something to do with it? I dunno.
You'll do fine with it.
I wouldnt worry about it too much.
Riba causes hemolitic anemia
and all that iron in your red blood cells has to go somewhere.
CS
Riba causes hemolitic anemia
and all that iron in your red blood cells has to go somewhere.
CS
I am about to start wk 27 of tx. My Ferritin is high. last check was 2000. has been as high as 2400. I was told by my hep dr. and my hema dr. not to worry. If it is still high after treatment, we would address it then. One of Ireasons it shot up was because my hgb was so low. Once I got on procrit, it came down some, but then went back up. But my hgb continues to be low.
I am und. have been since between wks 8 and 11. I have been told that this should not affect svr at all. And will probably correct itself once tx is over.
Good luck!
Jean
I am und. have been since between wks 8 and 11. I have been told that this should not affect svr at all. And will probably correct itself once tx is over.
Good luck!
Jean
FERRATIN was 1245 now down to 1045, with some diet changes, my vitamin b12 is also over the top, and all i want to do is sleep still! HEPATOLOGIST said it is caused by drugs we take, keep an eye on it, it can cause problems, so asked for that to be added to your labs if you can. Theory is out there it can cause a lack of absorption.
There is a disease in my family called Thalysimia, this sort of mimics that, a major and minor, I had been tested for it a while ago. Normally it is only in med people, morrocans, africans, italians greek.
Don't wory tho, this a subject I just got involved in so some one with more knowledge pls jump in.
Deb
There is a disease in my family called Thalysimia, this sort of mimics that, a major and minor, I had been tested for it a while ago. Normally it is only in med people, morrocans, africans, italians greek.
Don't wory tho, this a subject I just got involved in so some one with more knowledge pls jump in.
Deb
I had normal ferritin pre-tx and then it shot up to 800 on tx.
As soon as I was done with tx'ing my ferritin went back to normal.
Yours will too!!! And as you know, it plays no part in SVR.
As soon as I was done with tx'ing my ferritin went back to normal.
Yours will too!!! And as you know, it plays no part in SVR.
Port, I did have high ferritin prior to tx because of PCT. Phlebotomy took care of that.
Interesting you mentioned that because Pearlman said he would not have recommended phlebotomy to reduce my ferritin level (793). He based this on on specific data from his associates at the Mayo Clinic who indicate high ferritin does not impact on SVR. I'm sorry, I can't remember the names of the hepatologists he mentioned but he was very adamant about the ferritin level NOT affecting SVR.
As with any case, opinions vary with different hepatologists.
Trin
Interesting you mentioned that because Pearlman said he would not have recommended phlebotomy to reduce my ferritin level (793). He based this on on specific data from his associates at the Mayo Clinic who indicate high ferritin does not impact on SVR. I'm sorry, I can't remember the names of the hepatologists he mentioned but he was very adamant about the ferritin level NOT affecting SVR.
As with any case, opinions vary with different hepatologists.
Trin
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