Danger to give a hep c patient iron supplements?

[fluugy]

Hello

I am new to this forum and have a question: a doctor i saw a month ago who knows i have had hep c for 30 years told me after doing a complete blood work that i have low red blood cell count and told me this means i have anemia and he then prescribed iron supplements to take twice a day.

I saw a new doctor yesterday and he told me this was very dangerous for me to be taking iron supplements that anyone with chronic hep c should never take iron supplements.

Now i am very confused. This new doctor was very concerned and took new blood test this morning and i get the results back tomorrow.

The first doc told me that my blood work was fine except for minor liver enzyme elevation and the low red blood count.

This first doc did not schedule any follow up at all simply sent me on my way a month or so ago.

The new doc was shocked.

Anyone know which doc is right; was it dangerous as the new doc said that i was prescribed iron supplements?

I concerned as i dont know who to believe now.

Please any feedback would be most welcome.

Thanks so much!

fluugy

[Greta2012]

My doctor told me to take a multivitamin, but to absolutely make sure that it did not contain iron.  It sounds like your second doctor is the way to go.  Keep us posted....

[HectorSF]

All doctors are not equal. Most doctors specialize in particular areas of medicine. You won't go to a dermatologist (skin doctor) to get advice or treatment for cancer would you? No. So being chronically infected with hepatitis C for many decades means you should be seeing a gastroenterologist (specializes in the digestive system) or hepatologist (specializes in liver disease) for advice and treatment of your hepatitis C and any liver damage you have.

Before you do anything you need to find the cause of your anemia. They are many causes and some are very serious. Since it is a blood disorder you should see a hematologist.

Talk to a specialist for advice about your hepatitis C. Having hepatitis C for 30 years and not treating it can be very dangerous. You should have the status of your disease and liver damage assessed soon. You could have serious health issues that you are not aware of.

Good luck!

Hector

[fluugy]

I am sure you are correct; that I should be seeing a specialist.

As you said not all doctors are created equal and I have seen TWO hep specialists and both of them were so horrible such prima donnas so nasty treated me like dirt for the way i got hep c 30 years ago.

One at UCLA he scared the **** out of me telling me if i didnt have a biopsy i would probably die very soon that was in 1994. I tried to ask him questions and i can see him right now as if it were happening right now and he was impatiently tapping his pencil with this annoyed look on his face telling me he was the doctor and he was busy. I became very upset as he refused to answer questions not long questions just little important to me questions. I got really angry at him. Then he ordered me to leave the building or he would have security escort me out of the building.

Then another one in San Diego i went to see him and he was just as bad. I was taking xanax for chronic anxiety very very low dose of .5 mg a day and he refused to script me this was NOT for recreation. This man was so awful.

So THIS is why i never have seen a specialist again. I could write pages and pages on how docs KILLED my husband and my mother with their gross negligance and a friend of mine who they told him he had "indigestion" and he begged to stay but the ER doc sent him home and he died that night of a heart attack.

So TWO MORE murderers killers of ME by scaring me and treating me so bad i too fearful to go back.

I dont know if any of you people have had such bad luck with doctors as i and my family and my friends have had. Hope not.

This new doc is NOT s specialist but the first doc the one i saw a month ago obviously was just another example of a totally incompetant doc and should have his license lifted. The two hep c docs should too as although i am sure they know everything there is to know about hep c they dont know much about people and this IS MURDER in my book.

[WmoMitch]

Hector is right.  Moderate anemia is not so much a condition to be treated as it is one to investigate for underlying causes. Use the right doctor, find the cause.  The issue of iron use in CHC is a separate one, and I'd sure be more comfortable with a doc who expressed concern about that use than one who freely recommended it.  BTW, low RBC by itself does not define anemia, so make sure they are looking th the whole picture.Good for you for paying attn to this and asking good questions.  Wm

[willbb]

Anyone know which doc is right; was it dangerous as the new doc said that i was prescribed iron supplements?
-------------------------------------------------------------------
In regards to that question neither doctor would have any idea about whether iron supplementation should be given without running a full "iron panel"
Total iron
TIBC
Iron saturation

and most important
Ferritin  (Iron storage levels)

Very often patients with HCV have higher iron stoarge levels and supplementing iron to these individuals could be dangerous ,however if the complete iron picture is below "normal " levels and ferritin in particular is not elevated ,supplementing is not usually dangerous as long as well monitored..
Best..Will

[jules2551]

I agree with Will.  You need to have all a full iron panel run and Ferritin levels checked before you take any supplements with Iron.  They can be extremely dangerous to your liver if your Iron is greatly above the "normal" ranges.  So please don't do this on your own until you find out these test results.  You really should find a Hepa Dr who you feel comfortable with and will take the time to explain tests, tests results, and tx options to you.

Have a great day!
Jules

[belle19]

my doctor told me that while i'm on treatment not to take any iron.  belle

[rivll]

I am sympathetic to your view, I too have had some unpleasant familial experiences with physicians and specialists.
Having said that, they are what we have and if you find a specialist with a good bedside manner-go with her/him and forget the past. You need their expertise and there are some very decent docs out there. I have been proven wrong in my assumptions more than once. For your own health, let go of the anger and try again.
Good luck to you

[orphanedhawk]

My hepatologist told me too much iron, by itself, can cause cirrhosis.
It makes sense that someone with hcv, would not want to add any additional stress to their liver.

[catmagic0406]

When I was first diagnosed my Ferritin level was 550 - WAY high iron.  I was told to discontinue any iron supplements - and that meant NO multi vitamins since they contain iron.  Iron overload in your liver is something to try to avoid - it doesn't get excreted as well as other "things" and thus does some kind of "binding" action (I am forgetting how to explain this).  I was called an "iron storer" and have had phlebotomies done to get the Ferritin level down.  So that is what your doc. will be looking at in your labs re. iron - Ferritin levels.  So for me, there was a very obvious and definite reason to avoid iron in any form.  I guess this would be the case for any of us though.  Red meat contains iron; a lot of things contain iron.  With HepC, the iron tends to stay in the liver and exacerbate the disease.  I am not explaining this well.  Sorry.  Just remember - Ferritin #'s tell the story.

[catmagic0406]

Oh, I guess I should have said that IF you can find a multivitamin without iron, it's okay.  But you really have to look at those labels.  I also was told not to take Vitamin C - it somehow binds iron to it.

(I'm feeling really rotten tired right now - so I am not answering clearly - but this thread caught my eye since I do know about the iron overload thing.)

Your doctor will or should test you for hemochromatosis - a hereditary disease that causes iron storage in the liver.

[1fish2fish]

Now you guys got me freaked out. I've been taking an iron pill from day one of my tx. My doctor is aware I'm taking them however never said not to, I'm going to have to dig a bit deeper. I was not aware my body could store to much iron leading to a future problem.

[orphanedhawk]

The doctor who diagnosed my hep C told me to take a mult-vitamin w/o iron because of my cirrhosis.

Then I asked my hepatologist about iron, while living in the country where the iron levels of the water was quite high. He said I might want to have the water tested because too much iron can cause cirrhosis.
He's a top notch doctor, up on all the research.

cebean:
I've been taking a multivitamin w/o iron for years now.
They aren't that hard to find. I get mine in the health food store or online.

[catmagic0406]

I didn't mean to scare anyone.  I just know what my own situation was - and I was an "iron storer"/high Ferritin levels, so for me, iron was a big NO.  But this is definitely something that has to be looked at carefully by your doctor.  I never quite understood the Vit. C thing - as in, it tends to bind iron - but I haven't taken a Vit. C supplement for 10 years because of it.  If I get a cold I get Vit. C via juice.

orphanedhawk - I will check for those mulitV's with no iron.  Right now I take a whole shelf full of supplements just to avoid iron in a multi.  Duh.

[catmagic0406]

I have NO idea why I wrote in the past tense about iron.  Yikes.  I AM an iron storer.  I have to watch my Ferritin levels ~ have even had to ASK a dr. treating me for HepC to PLEASE check it out... because it wasn't on the order.  I was petrified of the first phlebotomy, but it was no big deal.  And it worked - twice.

[fluugy]

In the past few days since i saw the new doc i have been feeling like death. I dont know what is wrong with me...maybe it is psychological. I am all alone in Munich and dont speak German and i scared. I suppoed to go to the new doc this afternoon but i so tired and feel i am dying never felt this bad before. I been involuntarily moaning and this is not like me. Cant stand it anymore. I must walk to the s bahn which is 7 minute walk and then go one stop then take another train then walk ten minutes to his office and then up 3 flights of stairs. I must take a shower as i look a total mess. I so weak. I Feel i belong in hosptial. I scared of hospitals. Never been in one all my family died in them. I dont have anyone here to support me. I try to "get a grip" as i usually very strong woman but not now. Like i said i feel like death. Cant explain except so weak and never felt like this before. Dont know if this is depression or fear that all those iron supplements have done me in. I am a vegan for long time .I always have done daily long walks. But right now nothing matters. I have had very loose stool this morning and have had to use the toilet for bowel movements four times this morning. Not dark stool but just medium color. Just very loose and i think sticky too. I dont know how i can get to the doctor. I really do not think i can travel by public transportation but it is the end of the month and if i take a taxi i will be flat broke with maybe just five euros till the first of the month. I scared to call ambulance as not into drama. What should i do? Anyone got any suggestions. That first bad doc a month ago did an ultra sound of my liver and spleen and told me no signs of cirrohsis and no enlarged liver and my spleen looked good and no ascites in my abdomen although i dont think he is right because my stomach for at least three years has been very very large like i very pregnant and i know i have fluid retention in my arms and hands and ankles and feet but this bad first doc who gave me the iron tabs after just discovering i had low red blood count and that is all he did knowing i have hep c for 30 years and i think i had "wishful thinking" knowing that iron for hep c patients is a no no so i guess i was just so "happy" that here i am a hep c patient and he had done the ultra sound and told me the hep c was not bothering me and when he said i needed iron that made me feel that i really was ok. Of course this was me to blame as i am not a stupid person and i know pretty much everything about hep c so far as at least the basics i.e. iron no good but i so much wanted to believe him. I have lived in fanasyland all my life. This may have killled me i dont know. Seems when i had no treatment i always felt ok. Everytime i do get some treatment i start feeling horrible...this always happens dont know why.

I know what i will do i will take a taxi as i want to see this doc and somehow i will call someone of my friends in the US and beg them for enough money to last till i am paid on the first because just to take a shower and wash my hair is going to be a major miracle i cannot walk as far as i must to get to this doctor.

Please pray for me.

Thank you.
fluugy

[jules2551]

I have hemochromatosis and it has delayed my starting of tx for several months.  It's imparative that you keep these numbers in line for the rest of your life as it will continue to "add" damage to your liver if you don't.  I have enclosed a link that hopefully will explain it to you in more of a laymens terms.  I hope you are feeling better soon!  Jules

www.irondisorders.org/hemochromatosis

[fluugy]

Hi everyone...

Bad news the new doc got my blood work back and everything is terrible. That other doc i saw a month ago must have read someone else's blood work!

I have VERY LOW iron which this new doc said is rare for someone with hep c. This is what it said" Feritin should be between 13-150 mine is EIGHT!!!

My HCV virus load is 2340000 which he said was dangerous.hemoglobin red blood whould be between 13.5-17.5 and mine is 9.1. liver functions not too high 0-36 is normal mine is 42 for both. i meant commas with the periods but my comma key doesnt work .

He wrote me an rx for some hypnothyroid med to take once in morning and one for more iron once each morning. He told me i would continue to feel weak for about 3 weeks but then i will feel better.

I asked him for 2 ten mg tabls of ritalin not for recreation as i dont take anything for recreation but i know this will make me feel less weak and i am a therapist by profession via phone and skype and mp3 downloads and i cannot discuss my challenges with my clients and told that to doc and of course he agreed i cannot i must be strong for them bu i have no one here and dont speak german.

This doc told me that in TWO YEARS there is supposed to be finally some effective drug for hep c and i found this very amusing and we both agreed it is highly unlikely i shall be around in two years anyway.

This new doc refferred me to a professor of hep c and told me to phone for appt and i asked this new doc how long he thought before i could get in to see this professor and he said that it would probably be 3 or 4 weeks.

I also asked this new doc what the point after 30 years of hep c i mean what could the professor of hep c do for me and he said well he could discover the type of hep c i have and i said to this new doc well...it is too late for interferon and a liver transplant is out so why bother. So far as i have been able to discover there are no other treatments. And he agreed.

I told him i all alone and broke down in his office and he could have given me the ritalin as i have done reseach and i have seen although unconventional that it works to ease this impossible fatigue and i told him i have no support at all none at all and cannot really even take care of myself but this latest creep refused knowing i in hell. I HATE ALL DOCTORS NOW.

I toild that doc i was now thinking of killing myself even though i have never in my life been suicidal and i not suicidal but i mean i do not wish to die all alone in this apartment getting weaker and weaker everyday and suffering all alone with no one to even care at all for me.

I dont know why he didnt hospitalize me under the circumstances.

I thinking of flying to London as my late husband's doctor is there my husband was a psychiatrist and died of brain cancer in london. There is a really cool hospital there called Princess Grace which is more like a five star hotel than a hospital and it is small and only hospital i ever liked. Maybe this doc will refer me to a hep c specialist and hospitalize me there .

I dont know if they even do hospitalize anyone in my condition as this nice new doc did not suggest i be hospitalized as i guess because there really is no treatment for me.

I dont want to be in some regular hospital especially here in Germany where i dont speak German but at least in London they speak English and this hospital is not like a hosptial i so loney and dont want to get weaker and weaker all alone dying here all alone unable to care for myself.

Also i do have hypnothyroidism too VERY low red blood count and as i said that F thing is extremely low but before i take this i ask you people if i should take it even though this doc said that it is rare that hep c patients have lack of iron i do have low iron.

Feedback please.

fluugy i scared

[BoceprevirGal]

  This whole last post you made, makes no sense. Have you even had a biopsy?

[fluugy]

What makes no sense about my last post? Makes sense to me. NO...I have not had a biopsy...not planning on getting one either.

My latest plan is to run like hell from any and all traditional western doctors and find myself a competent Chinese medicine and acupuncture doc.

We all know here that all the combos and interferons...all the "latest and greatest" do nothing but make you all sick as dogs and make your doctors RICH!

You all should be happy to hear that I am once again feeling fine. Seems every single time i go seek out treatment i go through a few days of feeling i am about to die as this is what all these docs say to me...how "dangerous" my "condition" is and i already have "one foot in the grave." I just got a fax from the doc i saw TWO YEARS ago and the blood work was virtually identical to the blood results three days ago...virtually the same virus count...actually the one three days ago was LOWER than the one of two years ago but virtually all the same. I have been feeling fine for the past two years up till i went to see this doc a month ago when i felt fatigued then he told me i was "fine" and after that i felt just "fine" then a week or a little less than that ago i went to this second doc feeling fatigued and he took another blood test that conflicted completely with doc number one and told me how "serious" my condition was and how "gravely ill" I was. So all of a sudden i start feeling worse than i ever have.

Starting last night and i awoke this morning feeling good again. Like i have been feeling for all my life.

Every single time i have sought treatment i have for some reason immediately began to feel like death. The last hep specialist commanded me to drink only ONE liter of water or any liguid a day and he was one of the most horrible human beings i have EVER encountered. He told me if i drank more than one liter of water or liguid a day i was asking for total disaster. He was a pig.

That was about five years ago.

Please all of you continue to "enjoy" your lives as CUSTOMERS to your greedy docs who couldnot care less about you just wish to keep you alive for as long as they can squeeze every last cent out of your insurance companies and cause you to wish you were dead and your poor loved ones all the suffering they endure.

As for me...thank god i have never compromised my liver with all that interferon/combo poison that makes for a total lack of "quality of life."

Wake up and smell the coffee...everyone dies...even Jesus died....i used to go to this google hep c newsgroup for way too long hearing stories every single day of "oh i am starting a new combo tomorrow" "oh i feel so sick...hope THIS time it works"...got sooooooooooooooooooooo depressing i had to leave that ng and ditto with this one.

I feel so sorry for all of you that you are all so brainwashed into believing that Eastern medicine is somehow nothing but a bunch of "witch doctors." I mean AmeriKa has got you to believe all their propaganda...politically and medically and in all other areas of your lives and it is not only making fools of you it is killing you. Do you really think the Chinese are a bunch of STUPID people...do you really believe THAT? My god they had a glorious civilization when we in the west were still living in caves and today they OWN THE USA!!!! And they not all dropping like flies due to bad medicine.

You may choose to believe that the AMA and their greedy incompetent docs and their killer drugs is THE BEST in the world but you would be mistaken. I could tell you true stories when the M.D.s had given up on those with one i recall from a colleague i rented office space with and the docs had given up on him end stage of cirrohsis and hep c they told him to get his affairs in order he would be dead in two months. Fat out of shape etc this man for whatever reason made an appt with my colleague who happens to be a chinese medicine and accupuncturist doc and it is TEN YEARS later and this man who should have long since been dead is very much alive and not only alive but plays a strenuous game of tennis each and every day. This is not a lie and this is not the only true story this competent healer has told me.

[can-do-man]

Why are you here then???

[willbb]

We all know here that all the combos and interferons...all the "latest and greatest" do nothing but make you all sick as dogs and make your doctors RICH!
---------------------------------------------------------

Please show the data for members to go over that Inteferon /Ribaviran and either Victrelis or Incivek has 0% success rates ("do nothing" ) for HCV  therapy.
Thanks ...
Will

[Dee1956]

Who are you?  You came on here acting as if you needed help and then started actin ugly (as my grandmother called it)  People here were sincerely trying to help you.
You are wrong, yes, treatment was terrible however 3 months post I feel better than I have in many years
I could list all the people on this forum who have treated and are now fine however I have a feeling that is not what you want.  

[hrsepwrguy]

"Please any feedback would be most welcome.
Thanks so much!
fluugy"

"Please pray for me.
Thank you.
fluugy"

"Feedback please.
fluugy i scared"

"I feel so sorry for all of you that you are all so brainwashed"

No need to feel sorry for anyone here as we are all adults and know what we are up against.

Your welcome for all the help that these nice people took the time to try and answer your desperate questions.

Have a great day

Just a few facts for you from the uninformed Americans

There is no natural cure for Hepatitis C, and if anyone claims they have one, they are lying. It is as simple as that

Countries with high rates of people chronically infected with Hepatitis C are Egypt (22%), Pakistan (4.8%) and China (3.2%).

http://www.hepatitis-central.com/hepatitis-c/what-is-hepatitis-c.html