Liver Fibrosis Panel and Porphyrins

[jules2551]

Hi everyone!  Just got back some additional tests results.  Any help in deciphering would be greatly appreciated!

GGT 62 H
Bilirubin, Total  0.4
Hyaluronic Acid 134 H
Alpha-2-Macroglobulin 375 H
     It also states that this test was developed by Quest Diagnostics and is NOT approved by the FDA.

     Dr. wrote a note saying on report ...."suggest ^ fibrosis needs liver biopsy ASAP"

Porphyrins, Practionated, Quantitative, 24 HR Urine:

Total Volume 1500
Uroporphyrine 2110.2 H
Heptacarboxyporphyrin 570.2 H
Pentacarboxyporphyrin 71.3 H
Coproporphyrins 103.4 (within range)
Porphyrins, Total  2855.1H

Dr. wrote a note on this lab report saying "Porphyria Cutanea Tarda Confirmed"!

So with dx of PCT would I have to remove blood until porphyrins were within normal range before starting tx?  And I don't understand why my Iron levels were within range?  

Thanks everyone and have a great day!

Jules

[jules2551]

That is also true!  Most of the Drs here in NEPA left because of their liability insurance was practically tripled.  No wonder no one knows about Hep C here.  Also a friend of mine was a dr that specialized in arthritis and she moved to Virginia because she couldn't afford her liability insurance.  Ridiculous....

[curiouslady1]

Sorry, can't resist this.  The reason why insurance costs are going through the roof is because of the insurance companies greed for the most part, not the doctors.  

[jules2551]

Hi sejmiig,
     Thanks for your opinion but I am definitely going with the biopsy.  As for my history HCV probably 30+yrs, VL 725,000, GT lb.  And now I am also a memeber of the PCT club.  (I think I have joined too many clubs within the last six months) lol.  No IV drugs but heavy drinker.  So between HCV and drinking I would say I have done some serious damage.  Only the biopsy would tell.  Believe me, if I thought that the biopsy was not going to tell me anything I already new, I sure as hell wouldn't be sticking a needle into my liver.
     Also with insurance fraud I know there are physicians out there abusing their power and taking advantage of the insurance system.  That is why our insurance costs are through the absolute roof.  Seems like once a month on the news a Dr is being investigated for insurance fraud.  Just like with anything else there are always a few bad apples in the bunch.

have a great day!

Jules

[sejmiig]

agreed.  Hope I didn't come off to strong, as I said, there must be something in your history that is prompting it.  I just get paranoid because it seems like every doctor wants to shove a knife in you or do something invasive.  If a simple blood test will give them the information rather than a look/see..  Also, I know this sounds cynical, and again, I _hope_ the dr has some reason to want a biopsy, but I alway wonder if they do things to get money from insurance companies.  i know that sounds horribly paranoid and cynical, the medical profession is, in my opin, becoming somewhat mercenary for people that have insurance.

[curiouslady1]

I also had a fibrosure before the trial I was in.  Like everyone else around here I have the most famous doctor in the world.  My numbers were good and no further testing was necessary per the trial protocol.   The thought was that the numbers are good, the infection is being treated, if its successful, the liver will heal itself, end of story. No reason to do a biopsy just to get into the trial.   However, if the numbers were not good, as in Jules' case, and also in line with the trial protocol, a biopsy would be performed before any further consideration and because we now must wonder about serious, progressive liver disease not just an infection which no longer takes precedence in this particular scenario.  

[sejmiig]

http://en.wikipedia.org/wiki/FibroTest
" FibroTest has the same prognostic value as a liver biopsy."

[sejmiig]

Also, I should mention that I am seeing a dr that is involved in research and was involved in clinical trials, not only for this pretty lavender pill but others.

[sejmiig]

http://www.fairfoundation.org/news_letter/2010/02june/Fibrosure..pdf
perhaps he has a specific reason to do it based on your history.  my dr and the heptologist said they did not think it was necessary

[jules2551]

Thanks Will..I think he must have mis-typed his comments.

jules

[willbb]

Your doctors advice is correct Jules. Good luck on Tues with it.
Will

[jules2551]

Yes I am seeing a Hepatologist.  And I don't understand your comment "in re liver biopsy, I would avoid it"?  You mean avoid the actual biopsy?  From what i have read and what the warriors on here told me is the only way to know about fibrosis or cirrhosis is from a biopsy.  Actually Dr. called me today and scheduled me for Tuesday.  Everything is a go this time.  All paperwork is taken care of.  I am just happy to finally find out what has been going on in my body all of this time.

jules

[sejmiig]

the numbers confuse me sometimes  are you seeing a heptologist?
in re liver biopsy, I would avoid it. My doc did this fibersure(sp) test that tells 1. how pissed off and inflamed your liver is and 2, how much scarring and ciro there is.  the scale is 1-4 with 4 being the worse  I hit the jackpot on both ;-)
good news, is the incivek REVERSES the scarring/ciro!!
were those numbers for non-treatment, or are you on treatment?

[eureka254]

Not familiar myself at all with the above results.  Hopefully someone who might have some insight will pop in.  Good luck. ~eureka

[jules2551]

Bumping myself up