Iron + Hep C

[Bali05]

Since dx I pay attention to my iron levels and test them.

True or False:

- HCV needs iron to replicate hence lower iron is better ?
- lower Iron level has better tx results ?

my labs
Serum iron is 111  (40-155) been trying to get this down
Iron Saturation      27%  (15-55)
Iron binding Cap TIBC 418  (250-450)
UIBC                  307   (150-375)

With every iron test I do TIBC (binding Iron capacity)) is increasing.

When I read up on it I learn TIBC is an indirect way to measure Tranferrin which is made by the liver.

I am reading that TIBC is usually low with Hep C  why is mine going up ?

Anybody know how this works?

ferritin is normal

[Willy50]

Like I say there are a lot of posts on the subject at MedHelp.  This one surfaced today;

http://www.medhelp.org/posts/Hepatitis-C/Effects-of-high-ferritin-levels/show/87100

My interest is that levels of iron are indeed one area that we may be able to exact some control over.

Perhaps of more importance, it appears to be an area in which doctors almost routinely seem to pay little attention.  

Iron overload is associated with a range of issues, HCC being one that might concern people with HCV.  I don't see that you have an issue currently, but I wonder if information in this area might help other board members.  Some people who have gotten transfusions during TX have high iron stores, if I recall correctly.

best,
Willy

[Bali05]

Willy,

This is why i posted this , because i could not find  an answer.

i read an article from life extension that keeping iron on the lower end

(not deficient !) was beneficial for both liver health and tx response.

also read about it other places but never any specific #s. On top of that iron

seems to rise with many Hep C patients so it is an issue. Mine started going

up (which I know because of testing it routinely) but I changed diet and some

supplements and as you can see I managed to be back normal again.

Anyway thanks again for trying to help to find an answer on the Hep C + Iron

subject.

[nygirl7]

Constant testing is a waste of time and money when you have no intention to ever treat.  This is not watchful waiting it is indeed obsessive wastefull waiting.

I have bad eyes but don't run and get them tested twice a week in case one day I decide to get the Lasix.  Same thing.

[Willy50]

I don't have any answer that you can count on.  This is an area which a doctor should be of more assistance than someone like me.  My feeling is that many GP's may not even be that up on it, especially as it may pertain to HCV or in preparing to TX.

My guess is that if one is on the lower limits you are approaching anemia.  If one is on the upper limits you should have ample iron, all that you need.  I don't know the answer personally, but it seems to me that many doctors do not seem to be that concerned about high iron, or being way out of range after transfusions.  It also occurs to me that there may exist a contradiction; why are there limits for iron ranges and why do many doctors seem to place a more casual attitude about them?  Maybe it is due to their knowledge; they know that it isn't a serious problem until after very high scores- like my doctor felt about my 40's AST & ALT scores.  I was scared that I was out of range, he felt that I was damn near normal, just outside of normal.  I feel that the damage gets done over decades, even if it is in small amounts.  Why not attempt to change one thing that we do have some measure of control over?  My guess is the stuff that is on the doctors radar is the very high stuff.  The barely over range may be like being 5 or 10 lbs overweight.  It's statistical significance becomes more theoretical than practical.

My attitude is that the closer that you can stay in range the better.  If you can sweat the small stuff it may help mitigate damage until you treat.

I certainly agree with everything Bill wrote, iron is absolutely required in our diet.  I wouldn't shoot for a goal of having low iron scores.  

I would also recommend reading up on iron, but based on your labs there is nothing that I see that causes concern.  What does your doctor say about your scores?  I have always had the assumption that our iron stores stay relatively stable.  They don't tend to dip and spike like blood sugar.

If excess iron is a concern there are quite a few things you can do with your diet, without drugs or phelbotomies.

best,
Willy

[Bali05]

Thank you posting labs online. I frequently look them up to learn about labs.
TIBC goes up when Iron stores are low.
Mine aren`t low but TIBC goes up with every test anyway !?
First in the 200s,than300s now 400s and soon out of range if it keeps going.

Just don`t know why ?

[Bali05]

thanks for your response regarding iron

1) is there an optimal serum iron level for Hep C patients facing  SOC ?

2) Usually TIBC (Transferrin) with Hep C patients is low how come mine
    will soon be out of range high ? (It is going up everytime I test)

[can-do-man]

Jeez, people here spend countless hours trying to help then that mask man rides in on is white horse, don't bother reading ALL the posts and saves the day and we forget to thank him...... Oh well

canit

[Willy50]

I'm sure that I've read a few times that Bali was preparing to treat.  

I have seen people ask for help w/ labs here, biopsies, fibroscans, etc.  I've yet to seen them labeled as obsessive.  Most of the people here have at times an interest in treatment or HCV that may seem beyond normal.

My personal belief is that for some high iron gets under-diagnosed and treated.  In this case, the iron seems to be in range.

In this thread we saw that Marcia had low iron, too low to start TX.  There are others here in this forum who have had transfusions as a result of TX and who have high iron, way out of range.  I think it's good that people post about it,and aren't afraid to ask about it.

Willy

[Bill1954]

:)

[Trinity4]

"For the most part low iron isn't going to be in our demographic, but when entering into a treatment (such as I believe Bali is) that can last 48 weeks or longer and cost between 30-100 thousand dollars why would one scrimp on a 70 dollar test"

Did you read the NEWSFLASH?

Treatment is probably not going to be happening anytime soon and if it does I will be shocked.  So I too do not see the need for multiple iron testing because there is no indication of preparation.  However, whether Bali treats or not is not my choice and my opinions are soley are based on my observations.

[Willy50]

Obsessive is your word and your possible appraisal.
------------------------------------------------------
Here is a definition;
"An obsession is an unwelcome, uncontrollable, and persistent idea, thought, image, or emotion that a person cannot help thinking even though it creates significant distress or anxiety."
-------------------------------------------------------

I think that attempting to get a handle on one's iron labs is reasonable, particularly when one has HCV, a middle aged one at that, and who is preparing to TX.

If one is out of range, I think that one needs to decide who much monitoring is required.  That is a medical question, but I think it's well advised to ask others here about it for responses.  

I don't understand *your* persistence in diagnosing this as obsessive.  I disagree with that notion.  I could be wrong but it's basically what I've written elsewhere re:iron.

best,
Willy

[jusjames]

one or two iron test no problem as i said, but multiple test why?
you said to me a few post back
If you think spending money on lab tests is expensive, try ignorance.  ; )

i am confused do you buy into Bali obsessive testing of iron or not?
oh wait you just wanted to rebuke my honest and innocent opinion did nt you!
why?

[Willy50]

Mike, per this link an iron panel is about 69 dollars;

https://www.directlabs.com/Default.aspx?&catid=84&language=en-US&tabid=55

My point is that getting a baseline is a reasonable thing to do.  It's inexpensive and one can add it while one is getting other labs.

For the most part low iron isn't going to be in our demographic, but when entering into a treatment (such as I believe Bali is) that can last 48 weeks or longer and cost between 30-100 thousand dollars why would one scrimp on a 70 dollar test?
(my last one was high and so I take a few dietary measures to try to lower it or keep it low- I was just outside of range)

More than a few people here in this forum have excess iron.  It seems to me that having a simple, low cost lab test would be a good idea, if only once every 5 years so as to eliminate the possibility of having an issue, either of too low (not likely, but I've seen it) or too high. (far far more likely)

Since high excesses of iron can have serious effects on us why not check out having an iron panel?  I once had an casual friend (about 48 years) who died of complications of excess iron.  He was affected by hemochromatosis, and while I don't know his full story I believe that for many this is a disease which can be managed.  I have the suspicion that his wasn't.

best,
Willy

[mikesimon]

"Going into treatment with anemia due to low iron is a very bad idea. "

You probably don't need extensive iron testing at initially. First, I'd look for anemia.

Once you see a low hemoglobin you start looking for the cause(s). If hemoglobin is normal there is no anemia - iron deficient, hemolytic, Sickle Cell or any other type of anemia.

Mike

[jusjames]

knowledge is power of course , i did nt say it was'nt, but there comes a point when one becomes lost in numbers, when one becomes obsessed, standing on one foot so long helps no one, sometimes we have to say ok i have informed myself now i must move on .

[Willy50]

(jusjames wrote) "bali you must spend a fortune on tests, do you think you are getting obsessed? "
___________________________

If you think spending money on lab tests is expensive, try ignorance.  ; )

IMHO, a baseline is a good idea.  Sadly, many people go into treatment not knowing if they have sufficient iron.  Many people exist for years with high iron not knowing it, and yet able to change it.  Remarkably, some doctors even overlook this.  

I think knowing where one sits is very important.  Going into treatment with anemia due to low iron is a very bad idea.  Rescue drugs will not work if one doesn't have sufficient iron.  Having low iron could contribute to the being pulled off of TX, or having ones riba dosing lowered.

Bali, I would take look at the subject using the board search engine.  (iron overload, excess iron, hemochromatrosis) There are many posts on the topic.  In general, one may be able to adjust ones iron in a variety of ways.  Many of the people I know who are out of range (almost always too high) have doctors who tell them it is not a huge concern

Willy

[Bill1954]

From labtestsonline:

http://www.labtestsonline.org/understanding/analytes/iron/test.html

“TIBC (total iron-binding capacity) – measures all of the proteins in the blood that are available to bind with iron, including transferrin. Since transferrin is the primary iron-binding protein, the TIBC test is a good indirect measurement of transferrin. The body produces transferrin in relationship to the need for iron. When iron stores are low, transferrin levels increase and vice versa. In healthy people, about one-third of the binding sites on transferrin are used to transport iron.”

I don’t know if you use this site, Bali; or if this even helps answer your question. If you haven’t already, bookmark their homepage for future reference.

It appears to me that transferrin increases as iron stores are depleted. If HCV patients tend towards high iron stores, and TIBC marks transferrin, then it makes sense to me that they’d (HCV patients)would have low TIBC as a group?


Bill

[Bali05]

I might look obsessed or overly self induldged to some

but really I am only doing "watchful waiting".

labs are only meangful if looked at over time. What I learned

so far is that one lab result out of range means nothing.

Health is not a mathematical equation but more of an art form.

Many results in a row showing increase all the time tell more

than one elevation even if in normal range.

You are lucky if you have a Dr. that looks at all your labs over a long period

of time but what I find is that most just look at the last 1 or 2 labs.

Nobody knows you like yourself right ? First thing I was told on this forum

was " do never forget you are always your own advocate""

My TIBC is going up with every Iron test I am doing over the last 9 mo.

I expect the next one to be up again and soon out of range but do not have

explantion.

Just wondering if anybody knew about TIBC was about.

[Marcia2202]

I'm with Bill on that!

I would not worry about it, as your levels are normal,

You would have to worry if they were either too high or too low.

Your levels are fine and I believe they look good for going into tx. As Bill said, in case that you have to have procrit on tx, it would be terrible if you had too low values.

All my iron levels were too low before starting tx (hemoglobin was low too), so my doctor actually put me on iron until my levels came up. I was still on iron into tx,  which is usually a no no. I can only think of 1 other person on the forum I know who was put on iron. I would have been a bad candidate, if I would have needed procrit. My hemoglobin was always just above 'procrit needing' level.

[jusjames]

bali you must spend a fortune on tests, do you think you are getting obsessed?

[Bill1954]

I’m unfamiliar with the intricacies of iron storage problems, Bali. However, you do realize that adequate iron must be present to transport oxygen, and that support drugs like Procrit/Eprex aren’t effective at very low levels? I don’t believe you want to *eliminate* iron; it’s an essential dietary mineral, after all.

Bill