Aa
Ive been taking Iron daily on tx..how much damage
Im wondering how much Ive set back my treatment already...
Ive always been anemic and took iron 2x or 3x a week and my office knows this. Granted they are a GI office. and not Hepatic but why hasnt anyone told me that it is taxing and possibly damaging to the liver. I heard it here reading someone elses post and then googled it myself. Im so glad b/c since my numbers were down 4weeks ago I upped it to daily iron pills at 50mgs with 100+ calcium I will stop that for sure now.
Coincidentally, I was feeling like I relasped HCV this month with the body aches and burning fever eyes. I chalked it up to tx sx. Now Im wondering what last weeks draw is going to say. Ive been UND for 8 weeks.
I guess my real question is, halfway into tx has anyone ever switched drs. groups? Im going to go next week for my visit and keep my appt while collecting all my bloodwork and history. Considering seeing a specialist somewhere else. Im very angry and this is the second time Ive found things out on my own. The first was my incident with getting dental work and getting very ill afterwards because I just didnt know that I should have pretreated. Am I overreacting? Is it my job to research on my own?
Part of the problem may be too many professions in the mix. I saw the office PA first (both of them) bc I was told that they were more experienced in Hep C. Then a pharmacutical rep (she was an RN also) came to teach about treatment. At 8 weeks, I thought it was time to make an appt with the GI office dr.to see if that was better. It wasnt, the first PA actually spent the most time with me so I will switch back to her for next weeks appt and hopefully get more information. Im sure my jumping around the office hasnt helped establish a relationship but Im wondering of at this stage, Im in tx already so should I switch to Liver specialist now?
I dont understand why they never advised me to watch out for iron! The office knows I take the supplement but they have never asked how many mgs. I take. This forum has taught me so much about this disease and Im very lucky to have found it. I appreciate all of the time and knowledge so many have given us here. Im also very angry with my drs. for doing the opposite...if it wasnt a Saturday, I think I would be calling them and giving them a piece of my mind as this is the last straw.
Ive always been anemic and took iron 2x or 3x a week and my office knows this. Granted they are a GI office. and not Hepatic but why hasnt anyone told me that it is taxing and possibly damaging to the liver. I heard it here reading someone elses post and then googled it myself. Im so glad b/c since my numbers were down 4weeks ago I upped it to daily iron pills at 50mgs with 100+ calcium I will stop that for sure now.
Coincidentally, I was feeling like I relasped HCV this month with the body aches and burning fever eyes. I chalked it up to tx sx. Now Im wondering what last weeks draw is going to say. Ive been UND for 8 weeks.
I guess my real question is, halfway into tx has anyone ever switched drs. groups? Im going to go next week for my visit and keep my appt while collecting all my bloodwork and history. Considering seeing a specialist somewhere else. Im very angry and this is the second time Ive found things out on my own. The first was my incident with getting dental work and getting very ill afterwards because I just didnt know that I should have pretreated. Am I overreacting? Is it my job to research on my own?
Part of the problem may be too many professions in the mix. I saw the office PA first (both of them) bc I was told that they were more experienced in Hep C. Then a pharmacutical rep (she was an RN also) came to teach about treatment. At 8 weeks, I thought it was time to make an appt with the GI office dr.to see if that was better. It wasnt, the first PA actually spent the most time with me so I will switch back to her for next weeks appt and hopefully get more information. Im sure my jumping around the office hasnt helped establish a relationship but Im wondering of at this stage, Im in tx already so should I switch to Liver specialist now?
I dont understand why they never advised me to watch out for iron! The office knows I take the supplement but they have never asked how many mgs. I take. This forum has taught me so much about this disease and Im very lucky to have found it. I appreciate all of the time and knowledge so many have given us here. Im also very angry with my drs. for doing the opposite...if it wasnt a Saturday, I think I would be calling them and giving them a piece of my mind as this is the last straw.
I don't really have any additional input other than to say before each treatment, my husband's docs checked the iron level, determined that he didn't have too much iron in his blood, and reminded him not to take any extra iron supplements. I don't think the supplements that you've been taking will change the outcome of your treatment, but it's a good question to ask your doctor.
Advocate1955
Advocate1955
Hi Lee...sorry for everything you are going through. And I am really shocked your Drs didn't check your iron levels since you were supplementing with them. I too was dx with hemocromatosis and like Idyllic said you need to have special chemistry run. Just demand that your Dr run it. The %SAT and Ferritin test will either confirm or deny whether or not you have iron overload. Since you are younger and probably still menstrating you probably don't have an issue here. And I wouldn't be freaked out about taking the supplements. Just stop them now, talk to your Dr, and get the tests run. And while you are at it, get your Vit D levels checked also. Just as a precaution.
Have a great day!
Jules
Have a great day!
Jules
Hello, first I am so sorry for the problems you are having, If the doctor or PA knew you were taking iron I can't believe they would not have said something. Is it possible that you were really very deficient and they felt you needed it? I don't mean to be naive, just curious.
I would be very frustrated if I were you however you might want to ask first. I know how you feel, the world of the Hepa and GI docs is different than what I was used to. I hardly see the doctor just the PA and for me things have fallen through the cracks, I had a terrible medication interaction when I finished Incivek, I had to find the cause on my own, then convince the doc who called Vertex. He and his staff are now getting updates from Vertex and it will help others. Evidently since the May proscribing information Vertex has discovered other sx for Incivek however they don't seem to have a vehicle to quickly share this information. Maybe they will come up with one. Switching docs mid tx would be a daunting task for me. I had another Hep doc during my first tx, I thought he was just too busy to help me with any of the sx or the fact that I was losing my job. For this tx I found another doc who I thought would be better. After speaking to others evidently this type of management of Hep C is typical around here. I would love to have a doctor like Orphan Hawk, he sounds wonderful. Sorry I am rambling, I guess I am trying to say that all doctors make mistakes and unfortunately we sometimes have to be proactive about our care, not saying your fault, no way. I have only learned this through many screw ups, the biggest one being my false neg back in the 90's for HCV. Was tested again in 2004 showed positive however no one read my blood work, now I get copies of all blood work. Perhaps if I had tested positive in 90's or been told in 2004 I would not have been so damaged in 2007.
Sorry I did not mean to go on. I just know that I have jumped from the frying pan to the fire many times. I hope that this all works out and that you get a very good answer. Please let us know the outcome.
Dee
I would be very frustrated if I were you however you might want to ask first. I know how you feel, the world of the Hepa and GI docs is different than what I was used to. I hardly see the doctor just the PA and for me things have fallen through the cracks, I had a terrible medication interaction when I finished Incivek, I had to find the cause on my own, then convince the doc who called Vertex. He and his staff are now getting updates from Vertex and it will help others. Evidently since the May proscribing information Vertex has discovered other sx for Incivek however they don't seem to have a vehicle to quickly share this information. Maybe they will come up with one. Switching docs mid tx would be a daunting task for me. I had another Hep doc during my first tx, I thought he was just too busy to help me with any of the sx or the fact that I was losing my job. For this tx I found another doc who I thought would be better. After speaking to others evidently this type of management of Hep C is typical around here. I would love to have a doctor like Orphan Hawk, he sounds wonderful. Sorry I am rambling, I guess I am trying to say that all doctors make mistakes and unfortunately we sometimes have to be proactive about our care, not saying your fault, no way. I have only learned this through many screw ups, the biggest one being my false neg back in the 90's for HCV. Was tested again in 2004 showed positive however no one read my blood work, now I get copies of all blood work. Perhaps if I had tested positive in 90's or been told in 2004 I would not have been so damaged in 2007.
Sorry I did not mean to go on. I just know that I have jumped from the frying pan to the fire many times. I hope that this all works out and that you get a very good answer. Please let us know the outcome.
Dee
If you go to frijole's pictures, she has the stats compiled for many of the Geno 1's. Send her your stats and she'll add you to this list.
http://www.medhelp.org/user_photos/list/223152?personal_page_id=4523
http://www.medhelp.org/user_photos/list/223152?personal_page_id=4523
Thanks for all the info. My labs do not include the iron tests you mentioned. So close as I have the stats for Sodium serum, potassium, calcium etc.
Yes, OH I have the attitude now, whats done is done and in the big picture I am doing my body justice. Just this little curveball. I also need to tread more lightly.
Part of the blame is mine but so many other circumstances like brain fog and just the rx package coming in the mail without the simple warnings that you would get from the local pharmacy. You have to read it all and research. A little stumbing on info here too (like coffee is good, yay!
We dont need referalls with our insurance so I may see a hep dr. just to see if anything was overlooked Idyllic. I will post my stats next week, Ive never had a biopsy (which is a relief to me) so itll be just labs. Can you let me know where the spreadsheet is on this forum? I havent heard a mention lately but I thought there was someone collecting and compiling them. I would love to see it.
Thanks and good health to you all!
Yes, OH I have the attitude now, whats done is done and in the big picture I am doing my body justice. Just this little curveball. I also need to tread more lightly.
Part of the blame is mine but so many other circumstances like brain fog and just the rx package coming in the mail without the simple warnings that you would get from the local pharmacy. You have to read it all and research. A little stumbing on info here too (like coffee is good, yay!
We dont need referalls with our insurance so I may see a hep dr. just to see if anything was overlooked Idyllic. I will post my stats next week, Ive never had a biopsy (which is a relief to me) so itll be just labs. Can you let me know where the spreadsheet is on this forum? I havent heard a mention lately but I thought there was someone collecting and compiling them. I would love to see it.
Thanks and good health to you all!
My hepatologist told me too much iron, in and of itself, can cause cirrhosis.
Did you do any damage to your tx? Who knows?
However since our livers get a break while doing tx, and what's done is done, there's no need to worry about it.
Nothing you can do now but continue forward.
Maybe switch docs, I did the first time I did tx, went from a GI to my beloved hepatologist.
You are on treatment. You can't tell if the hep C is back or not.
That's the interferon that makes our brains strange, remember.
It can cause confusion, depression, etc. You can't feel those virons.
Don't stop taking calcium and D, just stay away from iron.
Good luck,
OH
Did you do any damage to your tx? Who knows?
However since our livers get a break while doing tx, and what's done is done, there's no need to worry about it.
Nothing you can do now but continue forward.
Maybe switch docs, I did the first time I did tx, went from a GI to my beloved hepatologist.
You are on treatment. You can't tell if the hep C is back or not.
That's the interferon that makes our brains strange, remember.
It can cause confusion, depression, etc. You can't feel those virons.
Don't stop taking calcium and D, just stay away from iron.
Good luck,
OH
Eek. in Point #2 I was trying to say you may not have to change doctors. The first question I asked when finding a GI was "What size of practice do you have & How many HCV patients have you treat / do you have?"
If your GI is totally behind the 8-ball when it comes to HCV then I would consider it. The best way to make that determination is to become knowledgeable yourself.
Hang in there!! This is more common than you think and manageable.
If your GI is totally behind the 8-ball when it comes to HCV then I would consider it. The best way to make that determination is to become knowledgeable yourself.
Hang in there!! This is more common than you think and manageable.
I am sorry this happened. I would be freaked and annoyed if something like this happened to me too. Unfortunately it has happened to most of us. You have to become your own expert in HCV from now on.
Now is the time to clear the air and find out what else you (or they may have overlooked).
#1 Change doctors
Regrettably the patient has a very active role in treatment for HCV. My GI is a real pro and grilled me about any meds & supplements I took. He is involved in HCV research though and is actually one of the pioneers with Incivek. The point is that your average GI is NOT going to be this way. I had to see a GI because although I do have a PPO, my PCP could not get approval for me to see a Hepatologist. I have known my current GI for 5 years and see his PA quite often. They are both in the loop however it is up to me to fax my labs to my PCP. Once I obtained authorization I saw my GI for just about everything GI related. I see him about 3 or 4 times a year.
BUT if your insurance plan allows for you to see a Hepa then I say go for it!! Either way you will still have do be pro-active but perhaps you won't worry as much.
#2 What lab values does your Iron panel reveal? That's the best way to determine a setback as far as the Iron Supps go. Post your labs and let the experienced members help you interpret them. Googling them in isolation can be profoundly misleading if done out of context.
I was not supplementing Iron the same way you were but back then I was eating a boat load of iron fortified foods like Cheerios or iron rich food like spinach. I am pretty sure the amount of iron may equal your supplement.
The levels on my iron panel supported the dx of hemochromatosis or more specifically secondary iron overload as defined by (1) an elevated serum ferritin or an iron saturation (serum iron/IBC X 100%) of greater than 50% and (2) presence of 3+ or more stainable Iron on liver biopsy
You need an Iron Panel as it shows IRON & TIBC
UIBC
Iron, Serum
Iron, Saturation
Ferritin
These levels have to be extremely elevated in order for action to be taken but I think you need to know what they are now. Mine iron lab values did go back to normal about a year after treatment even though I read read these type of iron levels do not resolve on their own and the levels are dangerous for other organs.
Now is the time to clear the air and find out what else you (or they may have overlooked).
#1 Change doctors
Regrettably the patient has a very active role in treatment for HCV. My GI is a real pro and grilled me about any meds & supplements I took. He is involved in HCV research though and is actually one of the pioneers with Incivek. The point is that your average GI is NOT going to be this way. I had to see a GI because although I do have a PPO, my PCP could not get approval for me to see a Hepatologist. I have known my current GI for 5 years and see his PA quite often. They are both in the loop however it is up to me to fax my labs to my PCP. Once I obtained authorization I saw my GI for just about everything GI related. I see him about 3 or 4 times a year.
BUT if your insurance plan allows for you to see a Hepa then I say go for it!! Either way you will still have do be pro-active but perhaps you won't worry as much.
#2 What lab values does your Iron panel reveal? That's the best way to determine a setback as far as the Iron Supps go. Post your labs and let the experienced members help you interpret them. Googling them in isolation can be profoundly misleading if done out of context.
I was not supplementing Iron the same way you were but back then I was eating a boat load of iron fortified foods like Cheerios or iron rich food like spinach. I am pretty sure the amount of iron may equal your supplement.
The levels on my iron panel supported the dx of hemochromatosis or more specifically secondary iron overload as defined by (1) an elevated serum ferritin or an iron saturation (serum iron/IBC X 100%) of greater than 50% and (2) presence of 3+ or more stainable Iron on liver biopsy
You need an Iron Panel as it shows IRON & TIBC
UIBC
Iron, Serum
Iron, Saturation
Ferritin
These levels have to be extremely elevated in order for action to be taken but I think you need to know what they are now. Mine iron lab values did go back to normal about a year after treatment even though I read read these type of iron levels do not resolve on their own and the levels are dangerous for other organs.
Small world!!
Thank you, you have many good points. I agree, the rest of the office can play a big part. They are helpful and available at the desk, I will continue to see a PAssistant there as they provide the most info. Its crazy, as a hairdresser I feel like I spent more time discussing haircare with clients than my doctors have in the last 15 years with diet and care of Hep C. Funny and sad. Yes, I need to look at the big picture. Im drinking lots of water now to flush out the extra iron.
The emotional roller coaster Im on isnt helping, if you couldve seen me an hour ago, I was very upset. Kind of glad the doctors arent working today, I wouldve called sobbing and yelling...jeez. Time to look into a AD maybe?
Are you through your tx yet? Also, Im going to have to look up ANC. Hope you are doing well now.
Thank you, you have many good points. I agree, the rest of the office can play a big part. They are helpful and available at the desk, I will continue to see a PAssistant there as they provide the most info. Its crazy, as a hairdresser I feel like I spent more time discussing haircare with clients than my doctors have in the last 15 years with diet and care of Hep C. Funny and sad. Yes, I need to look at the big picture. Im drinking lots of water now to flush out the extra iron.
The emotional roller coaster Im on isnt helping, if you couldve seen me an hour ago, I was very upset. Kind of glad the doctors arent working today, I wouldve called sobbing and yelling...jeez. Time to look into a AD maybe?
Are you through your tx yet? Also, Im going to have to look up ANC. Hope you are doing well now.
"Im wondering how much Ive set back my treatment already..."
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Sorry, realized I didn't address your question. Probably since I don't have a good answer and not sure if anyone can determine if any setback occurred at all. The most important thing is you are UND and best to focus on moving forward. We all have a few blips during trt, realizing there are things we should or shouldn't have been doing/eating/rxing, etc. No need to worry yourself over it now. Good luck moving forward.
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Sorry, realized I didn't address your question. Probably since I don't have a good answer and not sure if anyone can determine if any setback occurred at all. The most important thing is you are UND and best to focus on moving forward. We all have a few blips during trt, realizing there are things we should or shouldn't have been doing/eating/rxing, etc. No need to worry yourself over it now. Good luck moving forward.
I've gone through some of the same issues since I'm with a GI. Since around week 8 when my ANC tanked, I was referred to a hematologist for monitoring cbc's and getting neupogen shots. I also have my blood drawn for PCR's there, so I've had little contact with my GI.
Knowing what I know now mostly learned on this forum, if I had to do this over again, I'd find the most experienced Hepatologist in the area to guide me through trt. Getting the best advice right from the start is important since you don't want to second guess everything. Having a responsive staff and a doctor that will spend some time with you answering your questions is just as important. Some people have great doctors, but can never speak to them, or their staff is awful, so be cautious jumping around and do some research before you make your next change.
This forum has been wonderful with so many knowledgable people willing to provide good advice and information with sources to read on your own. Many of us have had to self advocate since some of our doctors are not familiar with much of the trial data. Good luck with your choice.
BTW, I grew up on the other side of the Delaware, next to P'burg.
Knowing what I know now mostly learned on this forum, if I had to do this over again, I'd find the most experienced Hepatologist in the area to guide me through trt. Getting the best advice right from the start is important since you don't want to second guess everything. Having a responsive staff and a doctor that will spend some time with you answering your questions is just as important. Some people have great doctors, but can never speak to them, or their staff is awful, so be cautious jumping around and do some research before you make your next change.
This forum has been wonderful with so many knowledgable people willing to provide good advice and information with sources to read on your own. Many of us have had to self advocate since some of our doctors are not familiar with much of the trial data. Good luck with your choice.
BTW, I grew up on the other side of the Delaware, next to P'burg.
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