Ammonia Level Question

[Sevetts]

I just got my ammonia levels back.  They are 78.  I know that normal is between 11-35.  78 doesn't seem that much higher than 35.  I know in some labs just a few numbers off isn't that big of deal, but in other labs it's major.  So how bad is 78?  Is this a dangerous level?  I know my Dr. wants to "up" my Lactulose but when I told the nurse that called that it really shoots up my blood sugars, she has to go back and talk to the Dr. before changing it.  Also, this is just my PCP Dr.  I go to a GI dr that specializes in hepatology on Monday.  That is the closest I could get to a hepatologist in the time frame I need for the surgery clearance.

Shelley

[deehart1911]

My brother has a liver disease called Wilsons and his ammonia levels are staying in the 163 140  230 its been low a few times like 42 this has been going on since September 19 he has been in the hospital since they give lacalos for his condition but they called us in yesterday and said his liver has shut down they took him of the list because his levels are to high and i want tho know of he was to have surgery with levels that high can our do more damage

[Sevetts]

Adv, I have totally stopped the lactulose...I hate it,it makes me cramp and other unpleasant things that I wont mention.  and I just don't like taking it, it's like drinking syrup.  But, I guess since I've been ordered by my pcp, the gi dr and the gi hep specialist and then Friday by the er dr...I should probably start it again.  (I'm making a puke face right now) hows that for acting like a grown up.  lol  I'll just have to wear my big girl panties every day I guess.  ha ha ha.  

Thank you all for all of your advice and help and support.   I know you all have gone through so much nmore than I am going through right now and yet you still have compassion.  You are all special people .  

Shelley

[Advocate1955]

Shelley, the lactulose is really essential for managing your digestive tract and minimizing the build up of ammonia and other toxins. The higher the ammonia level, the more severe the HE, and the more severe the HE, the more difficult it will be for you and your liver doc to manage your liver disease. You have to control the HE, so that you can manage your meds, your diet, and other aspects of your liver care.
Please don't skip your lactulose.
Advocate1955

[Sevetts]

@cat I ended up stopping the lactulose because it was just doing icky things to me.  But, on a recent ER visit (last Friday) the E.R. Dr ordered me back on it.  I still haven't started it again though.  I hate that stuff.

@advocate All of my bloodwork has changed since then.  As a matter of fact I've had Mass labs recently, on the 1st with pcp dr, the 10 for cardiologist & GI dr & the 12 for ER dr.  And with each one the blood work was worse.  I didn't realize it could change so quickly.  My platelets went from 109 or 107 whatever.. on the 1st to 85 on the 12th.  All of the numbers are just a lil worse the creatinine, bilirubin etc etc.  So yeah, I'm sure my number is different now.  

@sunru I haven't even heard of Kristalose...I'll have to ask about that.  Thanks.  How does it taste?  It's not thick is it?  I am trying to be as proactive as I can. :)

[sunru]

Have you tried Kristalose instead of lactulose?  I had the same problem with lactulose and insisted that my GI dr. place a special order for it since Kaiser normally does not carry it.  I told him the syrup had an effect on my blood sugar and could not take it and he placed a special order for kristalose - it is a powder that comes in packets. It does not seem to have as much sugar in it, what a difference ..now i can take it 2-3 times daily and no problem.  Check your insurance on what your deductible would be for it before you pick it up! It depends on your insurance. Be pro-active about this is so important for you to take. Take care.

[Advocate1955]

Shelley,
I think your MELD score has probably changed in the last few weeks since that labwork that you had at the GI's office a month or so. My guess is that you are up around 12 or 15 now. Still probably not high enough for a transplant, but you still definitely need to be seen by a hepatologist asap. Randy is right, Xifaxin will better control your HE. The trick now is for a hepatologist to keep your liver functioning well enough so that it doesn't fail.
Advocate1955