Hepatitis C Community
HEP C WITH HEMOCHROMATOSIS
About This Community:

This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

HEP C WITH HEMOCHROMATOSIS

Hi, everyone.  I was diagnosed with Hep C, type 1A about 3 years ago.  I didn't know anything about what to do, and my doctor just came out and said, "oh, your bloodwork came back and you have Hep C".  That was it!!!!  So I let it go for about 2 years, because I didn't know what that even meant!!

Then I went to a gastroenterologist (which is the type of doctor I was told to go to), and he did a liver biopsy and told me I was in stage 1, and "not to worry about it, people usually die of something else before they die of Hep C".

Then I found this site, because I kept hearing about how many people die every year of Hep C and how it's the number one reason for liver transplants.  Now I am making an appointment for the hepatology lab at University of Colorado Health Sciences Center, they are the best.  I'M LEARNING!!!

My questions are, I am scared to death to do that treatment of Riboviron and that other drug because I have heard it is really brutal, and particularly hard if you have depression because it makes you feel suicidal.  Any encouragment would be appreciated.

The other thing that I am worried about is, I just found out that I have hemochromatosis, too much iron in my blood.  I looked this up and it said that the main concern with this disease is cirrhosis of the liver and liver cancer, which, with Hep C, I'm already at risk for.

Does anyone know how much more of a risk of contracting cirrhosis or liver cancer with hemochromatosis and Hep C combined is??  They did not stain my biopsy for iron content.

Please help, anyone?
Related Discussions
7 Comments Post a Comment
Blank
Avatar_m_tn
Hi kenneltech

Stage 1 is good news  (could be a lot worse.)  Assuming you know Stage 1  (short version) means minimal liver damage, the doc is right when he says that you should not worry and that most die from something else other than Hep C.   Glad you're learning.  At stage 1 you DO have plenty of time to learn and in all probability you are no where close to death or even close enough to think about it from advanced liver disease from Hep C, or from cirrhosis, or from increased risk of liver cancer.

The iron overload (the hemochromatosis) is something seen with some Hep C patients.  This is something you definitely need to speak with your hep doc about and get his opinion on what if any treatment you need for the iron overload and how  (or if)  they are going to manage it.   You need to ask them how this iron overload is going to be treated and whether or not it could interfere with treatment for Hep C - and if so - how.

Not to scare you  (just giving you personal knowledge of iron overload from a close friend)  - in their second round of hep C treatment  (doing 72 weeks)  they developed a rather serious skin condition called porphyria tarda cutanea in about their 50th week of the Hep C treatment.   It was due to iron overload  (undiagnosed, and they were under the care of a "leading hepatologist.)  

The treatment was phlebotomy  (also called blood letting, kind of like giving blood; it reduces amount of blood and therefore reduces iron.)  
They continued on with the Hep C treatment and finished the 72 weeks in hopes the porphyria would resolve and not recur once treatment for Hep C was finished.   The good news is - their iron levels are now OK and the skin disorder has not flared back up.   The other good news is - they did fine through 72 weeks of Hep C treatment  (they felt OK during treatment, not great but OK - didn't get as wiped out as some do and they were able to work.)   The "not so good" news is....  four months after completing 72 weeks of a second round of Hep C treatment,  the Hep C virus is coming back.   In other words, the last "test" to see if Hep C virus was in the blood indicated that the virus was back.   They're going to know for sure in a few months.   Because of the iron overload, they don't believe the treatment for Hep C was effective.  The odds aren't (and weren't)  in their favor because of the iron overload, in other words.  BUT  (big but)  everyone's case is different.   That is just a personal accounting of one person I know with iron overload who developed a skin disorder because of it.   It's also just one person I know who didn't respond to the Hep C treatment.  Many do respond (and many probably have iron overload at some point.)

You're female  (your iron overload might be managed differently - ask you doc.)

I hope I'm not confusing you more.  

Bottom line is - you are stage 1, you've been told you have "iron overload", and you battle depression.   All of those are treatable.  And you have time to get as much information as you can (and from more than just one doctor if you want to.)    You could also get a hematologist (blood doctor)  involved in your care, and in fact your liver doctor might advise that if the iron overload is enough for concern.

Whatever you decide, you will get support and information on this board from some people who know a lot.

Good luck.  


Blank
Avatar_f_tn
Well I will say that the post from oneatenuff is very good advice.  My husband was miss diagnosed with hemochromatosis.  However the iron overload was treated in the same way it would be for a person with that disorder.  He had phlebotomies, removal of blood until enemic, about every 2 weeks until under control.  Find a good doctor and ask more questions  once you have gotten back your test results.  The Hemochromatosis Society is located in I think Port St. Lucy Florida.  The only way you can be prescribed a phlebotomy is through your doctor.  I hope that your new doctor is really good and you find the right treatment for you.  It is rare that women get hemochromatosis, it is a genetic disorder, although not unheard of.  The man that founded the hemochromatosis society, did so for his daughter.  Are you sure that the doctor's didn't say that it was hemachromatosis like symptoms?  It doesn't really matter...  Skin situations such as sever blistering are usually a problem in high sluffing skin areas, feet, face and hands.  Very painful, my husbands was on his hands, they also did not heal very quickly.  Now with the phlebotomies no more problems.  I hope that is what happens for you the right doctors and the right treatment.
Good Luck,
ameliafufu
Blank
432097_tn?1318552340
I looked at the test results again, and it definately says hemochromatosis.  Iron level was at 248, total iron binding capability of 482 and percent saturation of 51%.  Can you tell me what all that means, and if it is really bad?
Blank
408795_tn?1324939275
Here's a video on hemochromatosis and HepC.  What it means is you have too much iron in your blood, so you may have to have phlebotomies done before tx.  Since I've never had that done before I don't know what it consist of, but someone on this forum has had it done, I'm sure of it.  If I were you I wouldn't worry about it that much because it's not as uncommon as you would think.  Also, the tx for HepC isn't as brutal as you might think either.  Some ppl go thru the tx with hardly any side effects, maybe that will be you.  Hopefully someone will come along who can help you understand this condition.  good luck  

http://www.uwtv.org/programs/displayevent.aspx?rID=3344
Blank
797354_tn?1260712437
Hey Sweety, try 2 stay calm!?,
My brother & I both hv just been told we hv hemochromatosis genic,he has cirrhosis, i hv HCV,cirrihosis,liver turmers, so i know where ur comeing from, it was alot 4 me I thought I just had a real bad virous,lol well the virous part was rite,lol any way my brother has had cirrhosis 4 a yr that is managed by directs,low sodium diet,motering the liver, as fare as the iron the only thing I know is blood work,phlebotomy, but I go bk 2 my hepatolgist in a couple weeks so if u go b4 i do let me know,& I'll do the same
good luck! God b with u!-Red
Blank
Avatar_n_tn
I was told first I have Hep C....geo-type 2-B....stage 3..grade 3...now he says I have Hemochromatosis also....how bad am I......
  first doing the phlebotomy for like 15 weeks...before he can start trating the hepc...

I know the blood drawn wont be bad..but what about the drugs for Hep C....

I am single woman...low income...will I be able to work...will I lose my hair from drugs...any answers will be greatly apprecated....
Blank
956931_tn?1271639769
I just wanted to suggest that you will get more responses and help for your question if you copy and paste it in a new thread under "Post A Question".

Try not to panic, there are many here who can answer your questions with accurate, up to date information that they are happy to share. Remember that if you do start treatment that it affects everyone differently and though there are many side effects, some people experience none of them, or maybe just a few. I had every one of them I think, but I survived treatment. So, hang in there and remember to post this in a new thread so that the "experts" can have a look at it.

Best of luck.
~Pos.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Hepatitis C Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
Top Hepatitis Answerers
317787_tn?1373214989
Blank
Dee1956
DC
1747881_tn?1358189534
Blank
hrsepwrguy
Greeley, CO
Avatar_f_tn
Blank
susan400
FL
163305_tn?1333672171
Blank
orphanedhawk
Rural Mural, CA
446474_tn?1404424777
Blank
HectorSF
CA
766573_tn?1365170066
Blank
Idyllic