Aa
Very HIgh Ferritin / Iron levels possibly unsafe?
Hello everyone...hope this finds you all well with little sides today! I have been fighting continuous anemia(low hemoglobin) and neutropenia(low ANC/WBC)for new people here. My hemoglobin has been at 7.5 and my WBC at 1.8. My last blood work I asked for them to check my iron stores as recommended by several kind people here (jmjm and eisbein) as this could be a factor on why I can't get my hemoglobin higher even with Procrit. My results were checked twice which took some time but the Ferritin levels were 816.5 VERY HIGH (normal to 322.0) and I've never been on iron supplements. The doctor told me to stop taking my folic acid, B-12, and B-6 immedaitely.
My doctor is sending me to a hemotologist this Tues. to try to get me "safe" again as my doctor put it. I don't understand which of the three factors (WBC, hemoglogin, or Ferritin) are making me "unsafe" or all three? My ANC is still 1.0 and I thought I don't need neupogen until 500 ANC. My hemo is very low but I'm still not terribly symptomatic. Are my Ferritin levels making me 'unsafe"? Any words of wisdom on this before I see the hemotologist this week? I want to be prepared with knowledge.
Even with these low numbers I'm doing very well and remain as usual active and in very good spirits.......at 27/48 I see the end of the tunnel ahead! Thanks to eveyone and enjoy your weekend! Hope you are all doing well out there....and thanks for your continued support. It has meant so much to me.
Scott
My doctor is sending me to a hemotologist this Tues. to try to get me "safe" again as my doctor put it. I don't understand which of the three factors (WBC, hemoglogin, or Ferritin) are making me "unsafe" or all three? My ANC is still 1.0 and I thought I don't need neupogen until 500 ANC. My hemo is very low but I'm still not terribly symptomatic. Are my Ferritin levels making me 'unsafe"? Any words of wisdom on this before I see the hemotologist this week? I want to be prepared with knowledge.
Even with these low numbers I'm doing very well and remain as usual active and in very good spirits.......at 27/48 I see the end of the tunnel ahead! Thanks to eveyone and enjoy your weekend! Hope you are all doing well out there....and thanks for your continued support. It has meant so much to me.
Scott
In the narrative part of the bx report, you should also see some language to the effect that "no iron is seen." Or just assume that the pathologist is not bothering to remark on its absence, which he should have done. I remember freaking a bit when I saw my ferritin levels before starting tx and went into an absolute ferritin flurry myself. But as previously mentioned, the elevations have to be extremely high before anyone gets alarmed. My iron saturation was (is?) also on the high end of things, btw. At any rate, it will be interesting to see what your doc tells you on Tuesday. And may I recommend the ferritin fricassee?
My husband just turned 49 last week. He had just turned 46 when he was dx with HH.
He was only tested and dx for it AFTER I got a copy of his labs and his ferritin was over 2,000. I through one hell of a fit and the doc only tested to shut me up.
The next time we saw the doc, he said........well.....you do have HH and I am moving to Chicago.
The idiot knew he was wrong from the begenning and should had tested for it the first time I asked and he should have tx'd the ferritin BEFORE he tx'd the hepc.
Yes, it is very complicated.
Tina
He was only tested and dx for it AFTER I got a copy of his labs and his ferritin was over 2,000. I through one hell of a fit and the doc only tested to shut me up.
The next time we saw the doc, he said........well.....you do have HH and I am moving to Chicago.
The idiot knew he was wrong from the begenning and should had tested for it the first time I asked and he should have tx'd the ferritin BEFORE he tx'd the hepc.
Yes, it is very complicated.
Tina
continued....sorry...fast fingers does it again!
nauseous than I already am! So I'm afraid I'll leave that menu alone for now.
I too am overwhelmed with all the ferritin information out there to be found. The more I read the more I was confused....(not unusual for me these days however!) So I will present as much information above as I can to the doctor on Tuesday and see if any additional testing is called for.
Also I wanted to clarify....I didn't know that my ferritin was very high but that is what the lab report to my doctor said....VH or "very high". This is why I was concerned. I gather after reading all the above that my ferritin is indeed high but it could be ALOT higher. I may not actually have anything to worry about.
I looked up my Stains from my biopsy and it says
Special Stains: Iron, #1
lab report doesn't inform me what #1 actually means but I assume this is not bad as the doctor didn't mention any oddity to me about the stain during our initial meeting after the biopsy. If you have any knowledge on what this stain 1 means I'd appreciate it.
In the meantime take some time for YOURSELF....you are ALWAYS so generous with your time to others it amazes me. You have a gift of caring that is enormous!
Best to you Ina.
Scott
nauseous than I already am! So I'm afraid I'll leave that menu alone for now.
I too am overwhelmed with all the ferritin information out there to be found. The more I read the more I was confused....(not unusual for me these days however!) So I will present as much information above as I can to the doctor on Tuesday and see if any additional testing is called for.
Also I wanted to clarify....I didn't know that my ferritin was very high but that is what the lab report to my doctor said....VH or "very high". This is why I was concerned. I gather after reading all the above that my ferritin is indeed high but it could be ALOT higher. I may not actually have anything to worry about.
I looked up my Stains from my biopsy and it says
Special Stains: Iron, #1
lab report doesn't inform me what #1 actually means but I assume this is not bad as the doctor didn't mention any oddity to me about the stain during our initial meeting after the biopsy. If you have any knowledge on what this stain 1 means I'd appreciate it.
In the meantime take some time for YOURSELF....you are ALWAYS so generous with your time to others it amazes me. You have a gift of caring that is enormous!
Best to you Ina.
Scott
Once again you had me rolling in laughter about your dinner menu! I'd take HEAVY doses of that pepcid and immodium before those ferritin meals. It wouldn't sound so horrible but there is definately a ring of ferret in the ferritin which is enough to make me even MORE
"do you think that people without the hemochromatosis can also get a raised Ferritin on tx?"
Based on what the doc said, yes, not just from tx but from hepc as well.
"There is somebody on the board that even has iron stains on his legs and does not have the gene."
HH isn't the only thing that can cause "bronze shins". If you do a google search of "bronze shins desease" it will give you lots of stuff.
My man has tx'd twice. 24/24 and 48/48. We see his doc on Sept 20, maybe infergen for him EEEKKKK!
Based on what the doc said, yes, not just from tx but from hepc as well.
"There is somebody on the board that even has iron stains on his legs and does not have the gene."
HH isn't the only thing that can cause "bronze shins". If you do a google search of "bronze shins desease" it will give you lots of stuff.
My man has tx'd twice. 24/24 and 48/48. We see his doc on Sept 20, maybe infergen for him EEEKKKK!
Sorry about the confusion. Tx does not raise ferritin in everybody.
Lots of things can raise ferritin. Not just HH.
Exactly what my mans doc said was "Tx raises ferritin in some people and we just don't know why." I can't say I have read it anywhere either, but that's what the man said.
When I first figured out (thought) my husband had it (HH), I had never heard the word ferritin in my life. I had never heard of peg or riba either. I didn't have a clue he had hep c.
I went looking because he had bronze shins. His shins just below the knee had started turning bronze about 5 years prior. I had ask his regular doc about it and that idiot told me "He is just getting older (45 at the time)." Said he had seen patience with bronze shins from ankle to knee, and as they got older it got darker and it wasn't anything serious. What a load of ****.
When we found out he has HepC, I ask the gastro/hepc doc and he is the one that told me HH is rare and refused to do a test for it. More ****.
He doesn't see either of those docs anymore.
Anyway, once the ferritin was depleted, the bronze on his shins went away. It took about a year but it is gone.
I hope that clears it up some.
Tina
Lots of things can raise ferritin. Not just HH.
Exactly what my mans doc said was "Tx raises ferritin in some people and we just don't know why." I can't say I have read it anywhere either, but that's what the man said.
When I first figured out (thought) my husband had it (HH), I had never heard the word ferritin in my life. I had never heard of peg or riba either. I didn't have a clue he had hep c.
I went looking because he had bronze shins. His shins just below the knee had started turning bronze about 5 years prior. I had ask his regular doc about it and that idiot told me "He is just getting older (45 at the time)." Said he had seen patience with bronze shins from ankle to knee, and as they got older it got darker and it wasn't anything serious. What a load of ****.
When we found out he has HepC, I ask the gastro/hepc doc and he is the one that told me HH is rare and refused to do a test for it. More ****.
He doesn't see either of those docs anymore.
Anyway, once the ferritin was depleted, the bronze on his shins went away. It took about a year but it is gone.
I hope that clears it up some.
Tina
My understanding is that a diagnosis of hemochromatosis is confirmed by biopsy and the presence of iron staining in the tissue, as this indicates iron deposition. I was told not to worry about high serum ferritin. It is when iron becomes so abundant hat it is stored in the organs that we get in trouble. So the last piece of important data to consider would be your last bx description. If there is no mention of iron stain, then breath a deep sigh of relief.
Here's a handy little excerpt from _First Principles of Gastroenterology_on "Inherited Liver Disease":
http://gastroresource.com/GITextbook/En/Chapter14/14-8.htm
It's a quick read and quite clear, even for us arty types.
I do know that lactoferrin has an iron-binding capacity. Might be an avenue to explore?
Here's a handy little excerpt from _First Principles of Gastroenterology_on "Inherited Liver Disease":
http://gastroresource.com/GITextbook/En/Chapter14/14-8.htm
It's a quick read and quite clear, even for us arty types.
I do know that lactoferrin has an iron-binding capacity. Might be an avenue to explore?
The docs cannot tx your ferritin while on peg tx. Your ferritin isn't VERY HIGH. Your HGB is to low to tx ferritin anyway. The idea is to keep the HGB to at least 10 while getting the ferritin extra low. It can be tricky. Get copies of all labs and keep an eye on things yourself. YOU HAVE TO STAY INFORMED.
My husbands ferritin has been as high as 2012...that is VERY HIGH. It started at 1025 or somewhere in there when he tx'd the first time with peg/riba.(we didn't know it was that high and the doc didn't bother to tell us either). It ended at 2012 at the end of tx the first time. He could really tell a BIG difference after he tx'd the ferritin. Said he felt 10 years younger.
His ferritin was tx'd to 12 (very low) It was 12 at the begenning of tx for hep c the second time. It was about 585 when he was 30/48. It was 185 at the end of tx the second time.
The meds can and will cause the ferritin to rise.
Taking folic acid, B-12, and B-6 are not the problem.
The test they use to test for hemochromotosis is the "HFE gene type".
Good luck to you!
Tina
My husbands ferritin has been as high as 2012...that is VERY HIGH. It started at 1025 or somewhere in there when he tx'd the first time with peg/riba.(we didn't know it was that high and the doc didn't bother to tell us either). It ended at 2012 at the end of tx the first time. He could really tell a BIG difference after he tx'd the ferritin. Said he felt 10 years younger.
His ferritin was tx'd to 12 (very low) It was 12 at the begenning of tx for hep c the second time. It was about 585 when he was 30/48. It was 185 at the end of tx the second time.
The meds can and will cause the ferritin to rise.
Taking folic acid, B-12, and B-6 are not the problem.
The test they use to test for hemochromotosis is the "HFE gene type".
Good luck to you!
Tina
Scott,,,,My husband also started out with high ferritin of 699 and stayed high throughout his tx. We were also told that the meds sometimes cause the ferritin to raise higher. Mine was totally normal on tx and when finishing up on 52th week and had bloodwork,,,Mine had shot up but then after my 3 month post,,,back to normal. My husbands is now normal also. His white blood cell was always down also and stayed between .8 to 1 most of the time. He didn't have any problems with red blood count though. I did,,,and my hemoglobin was running in that range of 7 when I was put on procrit. Now the procrit did bring it up immediately in a week so that did work and kept me up to 10 or 11 for remainder of time. We both also had the hemochromosis test and that was negative. I also have asked Dr Cecil about high ferritin BEFORE even starting the meds,,,and he says its due to liver disease. I hope this helps some and don't think you need to worry about all this but sure wish your procrit would kick in to raise your numbers some. Keep us posted on what happens this next week! Best Wishes!
Very informative first hand account.
A few questions:
(1) In between treatments, did they use phlebotomy to bring the ferritin down from 2012 to 12? Anything else? About how long did it take to get to 12?
(2) You say "The idea is to keep the HGB to at least 10 while getting the ferritin extra low. It can be tricky."
Are you now talking *during* tx, or still between treatments? If you know, maybe you oould expand on "tricky" a little.
Thanks.
-- Jim
A few questions:
(1) In between treatments, did they use phlebotomy to bring the ferritin down from 2012 to 12? Anything else? About how long did it take to get to 12?
(2) You say "The idea is to keep the HGB to at least 10 while getting the ferritin extra low. It can be tricky."
Are you now talking *during* tx, or still between treatments? If you know, maybe you oould expand on "tricky" a little.
Thanks.
-- Jim
They drew one unit (about 1 pint) per week for 10 weeks until it was depleted. This was done in between peg tx. NOT DURING TX EVER. Check HGB and ferritin before each draw.
The HGB needs to be at least 10 while not on peg and riba to tx ferritin. The system is already compromised while on tx for hep C and the body has a hard time building white blood cells and red blood cells, HGB, platelets and everything else during tx for hep.
Draining blood during tx would make the body work harder. As my mans doc put, "to many balls in the air at once."
If you don't have hereditary Hemochromatosis (that HFE gene) once the hepc and meds are gone, the ferritin will most likely take care of itself.
I have 3 first cousins (brothers) that have HH (hereditary Hemochromatosis) and one had to have a complete transfusion and one just has a draw every 4-6 months and one just has to tx once a year or so. I didn't even know it existed until I did some google searching looking for my husbands symptoms.
I ask the first doc to test for it and he told me it was RARE and he wouldn't do it. Just tx'd the hep c without testing for HH. Once I found out how high his ferritin was after tx I talked an ER doc into testing for it. Ya gotta do what ya gotta do.
If you have it, any brother you have will most likely have it too.
It is a crazy gene thing and everyone is different.
HH is most common in white males of European descent. Sort of a white mans burden. It usually isn't a problem for women until after menopause. If you know what I mean.
I hope this helps.
Good Luck!
Tina
The HGB needs to be at least 10 while not on peg and riba to tx ferritin. The system is already compromised while on tx for hep C and the body has a hard time building white blood cells and red blood cells, HGB, platelets and everything else during tx for hep.
Draining blood during tx would make the body work harder. As my mans doc put, "to many balls in the air at once."
If you don't have hereditary Hemochromatosis (that HFE gene) once the hepc and meds are gone, the ferritin will most likely take care of itself.
I have 3 first cousins (brothers) that have HH (hereditary Hemochromatosis) and one had to have a complete transfusion and one just has a draw every 4-6 months and one just has to tx once a year or so. I didn't even know it existed until I did some google searching looking for my husbands symptoms.
I ask the first doc to test for it and he told me it was RARE and he wouldn't do it. Just tx'd the hep c without testing for HH. Once I found out how high his ferritin was after tx I talked an ER doc into testing for it. Ya gotta do what ya gotta do.
If you have it, any brother you have will most likely have it too.
It is a crazy gene thing and everyone is different.
HH is most common in white males of European descent. Sort of a white mans burden. It usually isn't a problem for women until after menopause. If you know what I mean.
I hope this helps.
Good Luck!
Tina
Ina, thanks for your input. I'm sorry you having problems with insurance/other things...take the break from here and get those things resolved. It sounds like a good idea and you have your priorities straight!
As for the rest of my numbers these are what I have:
Ferritin: 816.5
Iron/tibc
Iron: 183
transferrin, serum 223
total iron Binding cap, 312
% Saturation, 58.7
All seem to be normal except the Ferritin and the Iron is a bit high at 183 but not terrible at all.
I will ask to get the hemochromatosis test performed by the hemotologist. In the meantime I won't freak out....It isn't my nature to panic anyway....well maybe concerned but not in a panic....I just like being informed so I don't sound too awfully ignorant when I speak with the doctors. Your dietary suggestions above are well taken as well. Thanks Ina for taking the time to let me know what you know about this Ferritin issue. Now go and take the time YOU NEED for yourself....you've been generous enough with your time and care to the rest of us!...especially me lately!
Best to you and I am hoping you resolve all you hope to with minimal problems and stress in the coming weeks Ina.
Scott
As for the rest of my numbers these are what I have:
Ferritin: 816.5
Iron/tibc
Iron: 183
transferrin, serum 223
total iron Binding cap, 312
% Saturation, 58.7
All seem to be normal except the Ferritin and the Iron is a bit high at 183 but not terrible at all.
I will ask to get the hemochromatosis test performed by the hemotologist. In the meantime I won't freak out....It isn't my nature to panic anyway....well maybe concerned but not in a panic....I just like being informed so I don't sound too awfully ignorant when I speak with the doctors. Your dietary suggestions above are well taken as well. Thanks Ina for taking the time to let me know what you know about this Ferritin issue. Now go and take the time YOU NEED for yourself....you've been generous enough with your time and care to the rest of us!...especially me lately!
Best to you and I am hoping you resolve all you hope to with minimal problems and stress in the coming weeks Ina.
Scott
Good luck at the hemotologist and let us know what you find out.
I doubt they will alter tx because of your high ferritin. While you numbers are a bit higher than in the links, high ferritn does not appear to contradict tx.
Methinks the hemotologist will focus on your hemoglobin level.
BTW in case you missed my last post in the old riba thread, I did read about Procrit being prescribed at 80,000 units/wk in two spaced 40,000 doses. But the fact that you are handling this so well physically says an awful lot to me. Numbers are numbers, but our bodies process things things so very differently.
Here's hoping you sail (power walk ;))right through this whole thing !
I doubt they will alter tx because of your high ferritin. While you numbers are a bit higher than in the links, high ferritn does not appear to contradict tx.
Methinks the hemotologist will focus on your hemoglobin level.
BTW in case you missed my last post in the old riba thread, I did read about Procrit being prescribed at 80,000 units/wk in two spaced 40,000 doses. But the fact that you are handling this so well physically says an awful lot to me. Numbers are numbers, but our bodies process things things so very differently.
Here's hoping you sail (power walk ;))right through this whole thing !
Dutch,
These two links may be more reassuring.
http://tinyurl.com/alxxj
http://www.medhelp.org/forums/Hepatitis/messages/38348.html
-- Jim
These two links may be more reassuring.
http://tinyurl.com/alxxj
http://www.medhelp.org/forums/Hepatitis/messages/38348.html
-- Jim
Possibly it's liver related but I'll leave that up to your doctors. But if I remember correctly you cook a lot? If you're using iron pots, probably a good idea to get rid of them.
High iron levels is associated with a lower SVR, so phlebotomy (blood letting) has been used with some people to successfuly lower iron prior to tx. But with your low hemo levels, etc, I really don't know. Good you're seeing a hemotologist to sort this out.
-- Jim
High iron levels is associated with a lower SVR, so phlebotomy (blood letting) has been used with some people to successfuly lower iron prior to tx. But with your low hemo levels, etc, I really don't know. Good you're seeing a hemotologist to sort this out.
-- Jim
Thanks for your reply jmjm. I appreciated your links you found. I will discuss with the hemotologist this week about testing me for Hemochromitosis as discussed in the 3/12/05 forum about High Ferritin levels. I am a bit concerned after what I've read however my lab number for Ferritin is so much higher than those discussed in the links. I'm also a bit concerned that those with high Ferritin levels potentially have less success with SVR. Your memory did serve you well....I am a "foodie" and cook everyday but I only use stainless steel pots and pans so I'm not worried about getting iron in that way. Good thought however. I will learn more this week at the hemotologist and keep you posted. Thanks jmjm again for your valuable input as always. You are always a wealth on information!
Scott
nanniegea, as I understand it the Ribavirin specifically keeps the Hep C virus from being able to MUTATE as the virus is knocked down by the interferon. It is the combination that is a success against the virus. The longer the period of time you keep disarming the virus and it's ability to mutate the less chance it has to manufacture it's code to pass to healthy cells. So even though one may become "undetectable" at early stages of treatment it is imperative the length of tx is adhered to too disarm the virus completely and fully to stop it from it's ability to reproduce or mutate to survive. The length of tx is based on years of studies showing the relationship between length of tx and success of achieving SVR. And geno's 1 and 4's have a virus substrain that is more aggressive so your time is longer to "disarm" the virus set at a standard of 48 weeks....and often longer for many based on thier status at thier 12 week PCR. I'm sure there will be others to come along here and explain this better to you as I'm not particularly able to tell you "scientifically' why the tx has been determined to last as long as it does or exactly how it keeps the virus from duplicating or mutating but only understand it in "layman's" terms.
Best to you nanniegea,
Scott
Scott
nanniegea, as I understand it the Ribavirin specifically keeps the Hep C virus from being able to MUTATE as the virus is knocked down by the interferon. It is the combination that is a success against the virus. The longer the period of time you keep disarming the virus and it's ability to mutate the less chance it has to manufacture it's code to pass to healthy cells. So even though one may become "undetectable" at early stages of treatment it is imperative the length of tx is adhered to too disarm the virus completely and fully to stop it from it's ability to reproduce or mutate to survive. The length of tx is based on years of studies showing the relationship between length of tx and success of achieving SVR. And geno's 1 and 4's have a virus substrain that is more aggressive so your time is longer to "disarm" the virus set at a standard of 48 weeks....and often longer for many based on thier status at thier 12 week PCR. I'm sure there will be others to come along here and explain this better to you as I'm not particularly able to tell you "scientifically' why the tx has been determined to last as long as it does or exactly how it keeps the virus from duplicating or mutating but only understand it in "layman's" terms.
Best to you nanniegea,
Scott
Sorry to butt in on this thread but as you know we try to save the space on here. Anyway, my question has to do with viral levels. I remember reading about the inteferon killing off most , if not all, of the virus with the first couple of shots. If that is true then why do we have to take these meds for so long? (48 wk's for me) Anybody here have an explanation?
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