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Medical Forum / Diseases and Disorders / Hepatitis / January 2007

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Katie again

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Mom - 23 Jan 2007 04:32 GMT
My original post is not showing up on my news server but I could go into
Google Groups and read your responses as did Katie.

Thanks so much again for helping us look at different sides of the DX. We
both truly appreciate all of your help.

She spoke with the head nurse today and asked her about co-infection and the
nurse told her it was impossible. I think she needs to ask the doctor about
this before she starts treatment for 3A.

She has a consultation tomorrow to schedule the biopsy. If any of you
remember when she was first diagnosed they found a mass on her liver through
an ultrasound. This scares me a little and will be with her when she has the
biopsy.

I'll keep you all posted. Thanks again to all who responded here and to my
personal e-mail. I am so glad I found you. You have kept me sane for a lot
of years now.

LTF's????? Don't know where that came from.

Mom
mawtuan - 23 Jan 2007 11:09 GMT
Hi Mom,
If the NP who told you HCV infection with multiple genotypes is impossible
got that info from the MDs s/he works with, I would definitely advise Katie
to go to another doctor before she begins treatment.   There is a big
difference between tx for 1a and 3a.
Co-infection with different genotypes has been well known for years.  Most
of the initial investigations along these lines involved hemophiliac
children - but the information is applicable to anyone having a
blood-to-blood exposure.
If you Google "HCV multiple genotypes" you'll find more info than you'll
want to read.
Here are just a few of the links from my reference files:

http://www.blackwell-synergy.com/doi/abs/10.1111/j.1572-0241.1999.01298.x?cookie
Set=1&journalCode=ajg


http://www.hivandhepatitis.com/hiv_hcv_co_inf/aa/120804_c.html

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1
0445555&dopt=Abstract


Good luck dear, and let us know what you find out.
Thom
Signature

{formerly known as Firestar}

> My original post is not showing up on my news server but I could go into
> Google Groups and read your responses as did Katie.
[quoted text clipped - 18 lines]
>
> Mom
Mom - 24 Jan 2007 00:01 GMT
> Hi Mom,
> If the NP who told you HCV infection with multiple genotypes is impossible
[quoted text clipped - 39 lines]
>>
>> Mom

Thank you Thom. I'll pass these on. She has her first biopsy scheduled for
next Monday. I'm back to "worried Mom".

Mom
mawtuan - 25 Jan 2007 12:50 GMT
Mom,
Ask Katie to get copies of her lab work.  Iron saturation is a specific lab
value, rather than a diagnosis.  Look for tests like Iron (aka Fe), TIBC
(aka IBC), Ferritin, Folate and various Vitamin levels.  All are necessary
in evaluating a person's iron load.
Don't freak out if you see extremely high or extremely low results in the
report.  All of these things are in a state of dynamic equilibrium in the
body.  Each is dependent upon the other.  In any event, routine iron load
disorders are fairly common and easily treatable.
When Katie has her liver biopsy they will do a special iron stain on a
portion of the biopsy material.  This is routine for any liver evaluation.
Thom
{formerly known as Firestar}

>> Hi Mom,
>> If the NP who told you HCV infection with multiple genotypes is
[quoted text clipped - 44 lines]
>
> Mom
greyhackles - 23 Jan 2007 15:02 GMT
>My original post is not showing up on my news server but I could go into
>Google Groups and read your responses as did Katie.
[quoted text clipped - 5 lines]
>nurse told her it was impossible. I think she needs to ask the doctor about
>this before she starts treatment for 3A.
[...]

The head nurse is an uneducated moron.

One can only pray she isn't an indicator of the quality of care one could
expect from that office...

/greyhackles
elmoemerson@webtv.net - 23 Jan 2007 15:15 GMT
The head nurse is an uneducated moron.

/greyhackles  
/////////////
What a ya expect from a nurse whose specialty is 'head'?  :-)
elmo
twenty dollar co-pay required, tho

http://community.webtv.net/elmoemerson/DocElmosHepFile

http://community.webtv.net/elmoemerson/TheFamilyAlbum
Mom - 24 Jan 2007 00:05 GMT
> The head nurse is an uneducated moron.
>
[quoted text clipped - 5 lines]
>
>Only Elmo would think of that one. ;-)

Katie mentioned another thing I have never heard of. Apparently her iron
level is up. I think the exact phrase the doctor used was "iron saturated".
Can anyone help me understand this one?

Mom

> http://community.webtv.net/elmoemerson/DocElmosHepFile
>
> http://community.webtv.net/elmoemerson/TheFamilyAlbum
greyhackles - 24 Jan 2007 01:17 GMT
>Katie mentioned another thing I have never heard of. Apparently her iron
>level is up. I think the exact phrase the doctor used was "iron saturated".
>Can anyone help me understand this one?

Sounds like it could be "iron overload", having too much iron for the
carrying-capacity of the body. Iron overload is not good for anyone, but it's
especially not a good thing to have when HCV is involved, as high iron tends
to accelerate liver damage due to increased oxidation in liver cells, caused
by an increase in free radicals in the liver from the HCV.

The human body has no physiological way to eliminate iron (something I always
found rather fascinating). So any condition that significantly increases
absorption or sequestration of iron as a chronic condition can cause problems
if left untreated. And, for whatever reason, HCV tends to increase
sequestration of iron in the blood and certain organs.

Additionally, there is a fairly common hereditary disorder called
Hemochromatosis which increases iron absorption, usually well above normal
ranges. It isn't uncommon to discover this underlying, genetically-controlled
condition when investigating hepatitis, as the first order marker (serum
ferritin) is usually tested at some point in the diagnostic process.

Phlebotomy is the usual treatment mechanism for iron overload, and if done
correctly can get the iron load back in the normal range and keep it there
indefinitely, without undue side affects, and resulting in a normal life
expectancy.

But this throws a bit of a wrench in the HCV treatment perspective. High iron
is bad, period, HCV+ or not, and from the reading I've done on the topic,
treatment should commence upon diagnosis. And as anemia is almost always
present while on HCV therapy, obviously you really can't treat both conditions
at the same time without taking on risk.

Because iron load is one of the more significant factors in treatment success
(one of the top five metrics, after g-type, gender, VL and BMI) I think the
condition should be resolved first, before the first Peg shot is taken.
Depending on the body-stored iron levels, that could take months, or even
longer.

I sure hope the doctor treating Katie has experience in dealing with this kind
of problem...

/greyhackles
Mom - 24 Jan 2007 02:04 GMT
>>Katie mentioned another thing I have never heard of. Apparently her iron
>>level is up. I think the exact phrase the doctor used was "iron
[quoted text clipped - 51 lines]
>
> /greyhackles

Thank you Grey. She didn't tell me "how high" her iron levels were and I
don't want to bother her with this tonight so close to bedtime but I will
definitely talk to her about this tomorrow. I have read a little further on
this now and you are right..............this should be addressed "before"
treatment. I guess we'll see just how much this guy knows now.

Thanks again for your help. It means so much.
Mom
Dwight - 24 Jan 2007 04:48 GMT
>>>Katie mentioned another thing I have never heard of. Apparently her iron
>>>level is up. I think the exact phrase the doctor used was "iron
[quoted text clipped - 60 lines]
> Thanks again for your help. It means so much.
> Mom

Mom, I have hemochromatosis and the treatment for it is very simple,
phlebotomies until the iron levels drop. This had nothing to do with my
contracting Hep-C, but together they can cause problems. I have type II
diabetes that in all likelihood was caused by the damage to the pancreas
by too much iron. Hemochromatosis is more prevalent than most people
think and probably one of the most undiagnosed problems you can have. I
was told 20 years ago that I had non-A, non-B Hep, but nothing was
really said about it at the time. In 1992-93 I was found out for sure
that I had Hep-C, Hemochromatosis, type II diabetes, and after two liver
biopsies I had cirrhosis as well. Wasn't one of the best times of my
life. If the iron levels are kept in check, they shouldn't cause any
problems with Katie doing tx. I hope she doesn't have Hemochromatosis,
but if she does she's young enough that if she keeps on top of it, it
shouldn't cause any probes. Your both in my prayers.

Dwight
tom - 24 Jan 2007 03:22 GMT
> > The head nurse is an uneducated moron.
> >
[quoted text clipped - 11 lines]
>
> Mom

Has she been checked for hemochromatosis?

http://preview.tinyurl.com/ysfxlf
Mom - 24 Jan 2007 03:43 GMT
>> > The head nurse is an uneducated moron.
>> >
[quoted text clipped - 16 lines]
>
> http://preview.tinyurl.com/ysfxlf

No, Tom she hasn't been tested but I am going to mention this to her
tomorrow. Ever since Katie was young she has suffered from occasional joint
pain especially in her knees. We always figured it was "growing pains". I
think it was mentioned to her pedatrician but no testing was ever done.
Hopefully it wasn't this. I didn't realize how many complications could
occur so early in Hep-C. Geez.

Thanks, Mom
tom - 24 Jan 2007 04:20 GMT
> >> > The head nurse is an uneducated moron.
> >> >
[quoted text clipped - 25 lines]
>
> Thanks, Mom

It didn't show in me till I was 55. I go in 2/3 times a year and have a unit
of blood taken off and that controls my ferritin overload. Actually a pretty
simple treatment in my case. I'd have the disorder even without the Hep-C.
Michael Arends - 24 Jan 2007 01:28 GMT
Smiling Wickedly,  elmoemerson@webtv.net answered:
>  
>
[quoted text clipped - 5 lines]
> elmo
> twenty dollar co-pay required, tho

Muwahahahah  er.. I don't get THAT kind of service.   :-)

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Mom - 24 Jan 2007 00:02 GMT
>>My original post is not showing up on my news server but I could go into
>>Google Groups and read your responses as did Katie.
[quoted text clipped - 15 lines]
>
> /greyhackles

My thought exactly Grey. Thanks for your help.

Mom
 
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