Blood Tests Back - Really Scared

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hep112707
New Member


Date Joined Jan 2008
Total Posts : 7
   Posted 2/9/2008 10:05 AM (GMT -7)   
Hello all.  I'm still new here.  Posted only once I believe. But I read many of the posts and am encouraged.  Now I need everyones help.  I received my blood tests back and learned I am genotype 1a, viral load 5,890,000, ALT 125, AST 105.  Not autoimmune hepatitus. But the most disturbing thing is my iron level is very high, 406.  So the doc says "you have hep c with activity."  I have to have a liver biopsy and ultrasound.  After the results are back from those tests, I have to start the process of phlebotomy, (removing blood from my body).  Doc said once the iron level is back to normal, my ALT number will go down also.  Doc says he is very conservative with hepc treatement and if my biopsy shows no damage, he will probably recommend waiting on treatments.  I guess that bothers me because I want the virus gone.  It would make since to me that if you wait, it will only be harder to go through the tx.  Doc said the tx are not easy and why do it if liver damage is minimal.  He said that it is possible that new meds will come out that are easier to tolerate.  What do you all think of that?  Has anyone on here ever had hepc and high iron levels?  Do you think I need a second opinion?  Sorry for the long message.  I am just really confused. 
 
hepc112707  confused

CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 2/9/2008 11:43 AM (GMT -7)   
Hi Hep,

I am also a 1a (most difficult to clear). The highest my PCR ever was: 16,000,000. ALTs & ASTs each over 1,000. I had high iron 500+ (all up not that high - but NEVER take added iron & eliminate red meat) I did phlebotomy 2 times & it came down (I believe largely due to radical chang in diet & entire lifestyle) but my Heptologist says he sees levels in the thousands among us Hep C folks.

I would love to have your ALTs & ASTs. Your viral load is a worry.
I feel good when mine is under 1,000,000. It is a test that swings up & down throughout the day & will definitely go up with stress, other illness, or bad diet. So it is just a snapshot but anything over 1M is considered very high.

If your Dr. is not a GI or Heptologist by all means see one. Other wise I don't think you need a 2nd opinion (although its never a bad idea if you have good insurance). The biopsy will give you good info on exactly how much damage there is to your liver. Then you can better review your options.

I've done treatment & would be happy to discuss. Your Dr. is right on tbis - its a very difficult treatment & I'd do everything to avoid it - starting with diet & remember to keep yourself very well hydrated.

Best, Cary

hep112707
New Member


Date Joined Jan 2008
Total Posts : 7
   Posted 2/9/2008 1:08 PM (GMT -7)   

Thanks Cary,

You said my VL is a worry.  I think so too, but my doc said it is high but not to worry about that number.  He said a high VL does not necessarily mean severe liver damage and that a person can have low VL and have severe liver damage.  Doesn't make since to me. 

You said you made radical change in diet.  What did you do?  I eat fairly healthy now.  Very little red meat, mostly chicken and pork.  A bowl of wheat chex for breakfast, a salad for lunch everyday, and meat and two veggies for dinner. Very boring, but I am trying to lose 15 lbs.   I admit I need to increase water.  That has always been a real issue with me. 

You said you went through treatment.  Did you have a difficult time?  Did you work through treatment?

Thanks,

hep112707


CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 2/9/2008 3:25 PM (GMT -7)   
Hi Hep,

I think you have a good knowledgeable Dr. He's right. Don't worry. It never cured an illness. Get more info & really educate yourself on what these Hep C test result numbers mean. Learn to read your own test results and keep copies of them to track your success. PCR can go up & down depending on heaps of factors (especially stress & how can such a diagnosis not be stressful?), so it in itself is not a good indicator of the condition of your liver, neither are LFTs all by themselves. It mostly means the virus is active right now and pretty much very active over 1M. The most important info you will get will be from your biopsy and they are a piece of cake these days. Results will be back in days.

Try to get a book called "The Liver Cleanse" by Dr. Sandra Cabot (probably can even get it used on Amazon). It will teach you all you need to know about diet (your goal is to become vegetarian, well almost anyway). If you do her liver cleanse for 8 weeks you will lose the weight also. I used this book as a bible through my treatment and still do today - albeit not religiously.

The treatment is hell and I am happy to discuss my experience in detail (offline if you like) when you get your biopsy results back and are considering it further. First get as much info as you can from the internet and ask your Dr. if you may speak with others who've gone through it under his guidance (my Dr. willingly gave me these contacts).
If you live in a large city there is likely a support group you can attend. Call the local University Hospital & ask them for resources. They have the best and latest info on treatments & drug trials, results, etc. Remember their info is generated by the drug companies.

Before you consider treatment you must be as healthy as possible because it will knock the wind out of you (& more) for a year & then it takes a year to fully recover from it. So start on your health regimen now. Drink twice as much water as you think you should - 16 glasses a day. Squeeze lemon into the water (best natural source of Vit. C.)

These are the variables that wil indicate if you might clear:

Genotpye: 3 (clears most often), 2 (2nd most often), 1 & 4 (least often)
Age: Under 50
Race: Caucasian or Asian (blacks have a very low clear rate & hispanics 2nd lowest)
Weight: normal or thin (the virus loves fat)
Extent of liver damage: (if you have extensive damage you are less likely to clear)
Lifestyle: you must have a good (exceptional) lifestyle (I was a Vegan through treatment) & support & the less stress the better

Research Pegasys and Infergen treatments.

I was able to work full time 3 months, then went part time and had a great employer who let me work a lot from home as I was able. I also had good insurance that gave me many options most people don't have as it paid for extras like Procrit & Nuepogen (costly injections that increase white & red blood cells - 2 of the many big reasons folks drop out of treatment). If you are going to consider treatment take it very seriously as the only way to clear is to finish it. I don't know that stats exist on the numbers of people that start it & don't finish.

Hope this helps.

Love, Cary

hep112707
New Member


Date Joined Jan 2008
Total Posts : 7
   Posted 2/9/2008 4:03 PM (GMT -7)   

Cary,

I appreciate all of your advise and information.  I will continue to read as much as I can and educate myself.  I do not have copies of my tests, but I will get them.  As for the biopsy, the doc said it will be sometime in March, he thought.  I just want this done and over with.  I do not know much about the results of a liver biopsy.  That is my next venture to find out everything about liver biopsy's.  I have read there are degrees of liver damage but that is about all I know. 

Thanks,

hep112707


CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 2/9/2008 4:15 PM (GMT -7)   
Hi Hep,

Ask for & keep a file of all your test results. Yes, there are degrees to a biopsy. I've had 3 biopsies, before & after treatment, results all the same. I'm a high level 2. I'd be happy to discuss further when you get your results. For now, try your best not to worry, work on your health, educate yourself & gather your support. Plan A is to avoid treatment as long as possible & wait for better treatments. Sorry, I don't know of anything new that looks promising on the horizon. What are your symptoms? How are you feeling?

Best, Cary

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 2/9/2008 8:59 PM (GMT -7)   
Hi Hep112707, Are you seeing a Heptologist? If not I think you should. My husband was referred to a heptologist right after his diagnosis in 1994.

As far as treatment goes, it can be very hard on a person. My husband has done the treatment a few times, but it was unsuccessful for him. I have heard other people say that they did very well with treatment. I think the side effects are more severe with some more than others. It was very hard on my husband, but he wanted to be rid of the disease so he suffered through. I agree with Cary. You should really educate yourself on treatment and make the decision that is right for you.

My prayers are with you.
Butterflythree
 
There is always hope!


hep112707
New Member


Date Joined Jan 2008
Total Posts : 7
   Posted 2/11/2008 7:38 PM (GMT -7)   

Butterflythree,

Thanks for the post.  You asked if I am seeing a hepatologist.  I can honestly tell you that I am not sure.  Sounds crazy, I know.  My primary care doctor said she was referring me to a hepatologist.  I got a business card from him and it did not say hepatologist.   I looked him up on the internet and his clincal interests are:

Drug-induced Liver Disease, Hepa*** C, Iron Overload, Iron Storage Disease, Liver Transplantation and Pophyria.

If he is not a hepatoligist, he should be.  What do you think?

hep112707


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 2/12/2008 9:38 PM (GMT -7)   
Hi Hep112707, I can't really answer your question for certain, but it sounds like he may be a hepatologist. I hope everything works out for you.
Butterflythree
 
There is always hope!

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