Ammonia levels who do I believe?

[mycoldfeet]

Hi, everyone, a quick history, I'm 1a and did 48wks of Peg/Riba in 2004-05 cleared at 12wks and end of tx but relapsed at 6mo pcr, Doc suggested I clear the meds, then start a 72wk tx, did the whole battery of tests before starting again bx shows stage 3, but where the problem comes in is my ammonia level is 620,(0-40 is the norm ) at which Doc says I should be dead or in a coma, not joking around in his office. He had the test done in 3 different labs, cause he said the tests must be wrong, put me on Lactelose (yuck) and even with 3xday 40ml my levels still 375-450, finally put me on 1/2 dose Peg/Riba for a week to see if it would throw me into a coma, didn't and just finished my 8th week full dose pcr at week 4 showed drop from 4mil700thou to 56thou going for 8 wk pcr tommorow, My Hep Doc says ammonia level tests are unreliable so quit getting them (but wouldn't take me off lactelose) all my other bloodwork is fine. All my gastro and Hep Doc tells me is my case is unusual, anyone else have this, or know if I should worry that I'm not getting the whole story?

[NYgirl]

Make sure the insurance company will PAY for the 72 weeks.....as you know mine is denying even though I'm already IN IT.

I don't know anything about ammonia levels I'm sorry. I just wanted to make sure you had everything ironed out before you start.

[mycoldfeet]

I had written in about my problem with Blue Cross before I started and was told back if the Doc writes the script they have to fill it, or basically ignored. So I appreciate you for saying it, but I got it through the drug Co before starting and told Blue Cross to.....well this is a family forum lol.

[NYgirl]

I don't get quite what you mean...'splain!

[NYgirl]

You mean the drug co approved all of your meds in advance as in Committment to Care?

I'm working on that now but STILL gonna try and make a fight with those....................insurance................'rds!

I have huge hate for them!  ;)

[mycoldfeet]

Back before I started tx I was told by Blue Cross that 72wk tx was experimental, and wouldn't pay unless I went the consesus interferon route, and there was a thread talking about insurance and I wrote what I had to do. The response was that if the Doc writes it the insurance has to pay, didn't want to argue (there was a lot of drama going on in the forum at that time) So I just let it go. It was a couple months before you had your problem with them.

[mycoldfeet]

We crossed each other, I'm on Pegasys and I called the Co, Roche and they faxed me an application, I faxed them my script and letter of refusal from insurance Co and was approved in 3 days and they send my meds free, a months worth at a time overnight mail in cold pac, didn't go through any program except the Co. itself.

[NYgirl]

AH the same thing I ended up doing.

Isn't it a sick world the people who are SUPPOSED to provide you the meds wont and the company you THINK wants to make the money gives them to you so willingly for FREE!

I am glad we have another person to talk about this to because you got to KNOW it will help a LOT of people!

And also....it makes me feel better knowing you went through it somehow. I too can be a big fat crybaby sometimes and get SCARED and this whole thing - you know how it feels!

I'm so glad you posted that.  :)

Thank you MUCH!

[sunspot]

<b>40</b>ml 3X = 120ml of Lactelose a day? Err, do you have to stay close to the men

[mycoldfeet]

I don't go far lol, and I must know the location of every restroom in every store in Lake Charles.

[Kalio1]

Don't know if this will help or not but I found this about it in a doctor's newsgroup so take it for what its worth. I don't know the doctor but he appears to be connected to Harvard:



" Measuring serum ammonia levels rarely seems to provide
clinically useful information.  "Never" would be overly strong.
There are occasional patients who have multiple possible etiologies for encephalopathy, and who also have a long individual history correlating ammonia levels in them with hepatic encephalopathy,where measurements do sometimes seem to help sort things out.  But in most people with hepatic encephalopathy, following serum ammonia levels doesn't add much information to the clinical picture.

When the ammonia level doesn't agree with the clinical exam, you just tend to ignore the ammonia level. When
it does agree with the exam, not much information has been added."

--
David Rind
***@****

[mycoldfeet]

Thank you for that information, I sure was wondering, guess my Hep Doc was right, Gastro wrong. Thought they just didn't want to tell me something. Must be my riba induced conspiracy theory gone awry. Lol thanks again.

[Kalio1]

I wanted to add to that that he doesn't give any particular parameters so being as how yours is so far out of bounds has the doc looked for other influences? I read somewhere gallstones can also raise ammonia levels and I am sure there are other possibilities too. Just a thought.

[mycoldfeet]

I do have a gallstone, they told me on my first ultrasound, fairly large one, but it hasn't bothered me so I haven't bothered it, but I am sure going to ask about it my next visit.

[ladybug52]

My brother had really high ammonia levels and was usually not very "with it" cognitively.  You certainly sound as if you are doing o.k., when you're not on the lactolose do you notice any difference in your thought process? My brother had   very        delayed      processing...  even on the lactolose--worse when he would forget to take it. I think the others are right, the level doesn't mean much.