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Old 04-22-2006, 11:22 AM   #1
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Question what #'s are considered high ammonia

I have been searching for high ammonia level #'s. but i cant find numbers anywhere. when people talk about having high ammonia that's all they say is my ammonia was high. so does anyone know the #'s your ammonia levels should be. my recent test results came back w/ ammonia level of 91 and my dr. up'ed my meds again. everytime i get my blood test done she ups my med so is 91 something to be consered w/. anyfeedback would be greatly appreciated. thanx

Last edited by christine307; 04-22-2006 at 12:42 PM. Reason: mispelled a word

 
Old 05-18-2006, 04:24 PM   #2
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Re: what #'s are considered high ammonia

Normal ammonia levels are 11 - 35 so, yes 91 would be high.

 
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Old 05-19-2006, 05:53 AM   #3
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Re: what #'s are considered high ammonia

Tho there is kind of a "magic' number of whats considered to be normal,there can be sometimes big discrepencies in just how the lab that is doing the testing and evaluating actuallyhas their parameters set.it is always best to actually get your own copies of every single set of labs you get from anywhere you go like your primary or some sort of a specialist or even any ERs you may need to go to.

unfortunetly,when you have a chronic ongoing condition,it is up to you the patient to advocate for yourself and obtain ALL of your own copies of all medical records from everywhere you have been seen for anything having to do with this particualr conditon.

get copies of all of your records,espescially those very important labs that are routinely done.all of them.then keep the most up to date info in some sort of a file that you can take with you,everywhere.the file should have every single lab done from the onset of this condition to present as this is the best 'timeline' that would indicate the ongoing deterioration of certain things.having this baseline is crucial when in an emergent situation and gives the docs something to work from.they will immediately know after doing their own labs,just how much worse or better something has become since the last labs were done.

just obtaining a copy of the ongoing labs really IS the most important thing for you to be doing right now.I did this for my son when he was first Dxed with being in liver failure,we were constantly needing his labs done and that also included the ammonia done every wednesday after he was done at school.i just picked him up every week and off we went for the next labs.i have to ask you this tho,when they do your ammonia level lab,are they drawing it and then IMMEDIATELY placing it on ice?this ice thing is very very imprtant as once the blood is drawn the ammonia can dissapate rather quickly,this is why that being on ice immediately thing is crucial in obtaining the 'real" level.hopefully,they are doing this.did they also tell you to try and really limit the amount of actual protien in your diet?protien is a huge problem for people with liver disease since this is where the ammonia is comming from once it is digested.in a person with liver disease,that ammonia, as you are probably already aware of,just needs to be cleared asap.are you also on that wonderful lactulose too?the was my sons number one most hated med.ever.he just choked it down.to this day,he cannot actually swallow any sort of liquid med likecough syrup or anything like it at all.that lactulose just pops up inside his head anytime he has to take a liquid med even after the seven years since this was needed.he was only 12 at the time so this is kind of just 'there'in his brain now.

i hope things stay stable for ya.but start obtaining ALL of your records and most importantly,those ongoing labs.the way they are written up,they give what was tested and across from that,whether it was in or out of range along with the actual level number and then across from that,they(thankfully)also give the normal ranges of where it is supposed to be.so they are pretty simple to actually interpret.the thing to remeber though,is that not all labs use the same types of actual testing procedures to obtain that same result as the next lab,so this is the most important reason for actually obtaining the actual lab sheet itself,as this will give you the numbers according to THAT particular labs way of testing,tho they can be pretty close as far as actual range numbers,they can also be somewhat different from lab to lab and hospital to hospial too.

please keep us posted on just how things are going for you.and good luck,Marcia

can I ask you just what your actual liver problem is?have you had the TIPS done?do you still have actual blood flow thru the portal vein at all yet?we didn't even know my son even had any sort of a liver problem til he developed that portal hypertension and just started vomiting up blood at school one day,and our lives were totally changed forever.

 
Old 05-20-2006, 11:36 AM   #4
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Re: what #'s are considered high ammonia

thanx you everybody for your response's. sometimes it takes me a while to respond because i don't feel very well. I actually don't know much I am pretty lethargic most of of the time i do know that I have end stage cirrhosis. but I don't know why at first then send I had hepatitis-c then they said I have alcohol induced....??? I also know that I have portal hypertension and varicose vein in my throat. but I don't have varsices(sp). I don't have tips they mentioned something about it but I don't know what happened. I had so many thing wrong w/ me that there is a lot of things they couldn't do. so how do i go about getting my records? I wouldn't even know where to start. thank you !

I hope all is well w/ you.

 
Old 05-20-2006, 04:41 PM   #5
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Post Re: what #'s are considered high ammonia

Quote:
Originally Posted by christine307
thanx you everybody for your response's. sometimes it takes me a while to respond because i don't feel very well. I actually don't know much I am pretty lethargic most of of the time i do know that I have end stage cirrhosis. but I don't know why at first then send I had hepatitis-c then they said I have alcohol induced....??? I also know that I have portal hypertension and varicose vein in my throat. but I don't have varsices(sp). I don't have tips they mentioned something about it but I don't know what happened. I had so many thing wrong w/ me that there is a lot of things they couldn't do. so how do i go about getting my records? I wouldn't even know where to start. thank you !

I hope all is well w/ you.
christine307,
Sorry to hear you're not feeling well. You can get your copies of your records by calling your MD's office and making a request. You may have to go in and sign a release.
Ask for a referral to a registered dietician who can help you work out a diet plan, you need to build up your nutritional status. No alcohol or abrasive foods that might irritate your varicose throat vein. Maintain a low sodium diet because too much salt can cause water retention. Please keep us posted when you feel up to it.

 
Old 05-21-2006, 06:34 AM   #6
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Re: what #'s are considered high ammonia

If you actually have portal hypertension along with a varicose vein in your throat,you DO have varices.thats what varices are.the TIPS stands for (let me see if I can actually remeber it now)trans jugular,intrahepatic,portosystemic shunt.this is kind of a stent that is snaked down thru the jugular vein inside your neck that they end up placing into a large vein or any other suitable vein inside of your liver.this allows the blood a new place to flow and will actually 'get rid of" the hypertension going on as it lets all that backed up blood finally flow out.so the varices will just kind of go away on its own and the risks of them rupturing and bleeding into the stomach is pretty much gone,bUT since the blood is no longer flowing thru the portal anymore(which you are already dealing with)that ammonia is also no longer being cleared properly.my son took alot of lactulose to keep the stools going really good.the longer the BMs sit in the intestines the more ammonia gets leached into the bloodstream.as you are probably already aware of,this can lead to too much ammonia in the brain and cause encephalopathy of the brain.this is not a good situation,as it can lead to brain damage from the toxicity of the ammonia on the brain.has your doc ever mentioned the TIPS procedure to you at all?when my son was first Dxed with liver disease and also portal hypertension,they were planning on doing repeated "bandings' of his varices.this really sounded like the whole long dragged out procedures was going to be one heck of a hue pain in the butt.but the morning we showed up at the hospital to have that firt banding done,my son was still asleep and not prepping at all for it.well the GI docs he had told us that they had actually changed their minds about doing any banding afte they spoke with a different doc from somwhere in california about trying the TIPS instead.the thing is,tho the procedure had been done alot on adults,there were actually only a handful of cases that they had actually done on children.my son was one of the first ped patients to ever have this procedure done.

the TIPS really really helped tons and we were able to actually take him home from the hosp much sooner than expected.at THAT time,we were told that the TIPS could possibly last about ten years.unfortunetly a few months later we found out that his original liver disease Dx was not actually what they thought it was and he actually had something even worse,primary sclerosing cholengitis.shortly after that,he needed an immediate liver transplant.but that tips had worked great up til it was removed along with the actual liver during transplant.

this really would be a good thing to discuss with your docs,really.it corrected so many of his symptoms that he had been having at that time.he was even ableto back to school for those few months til the sh** hit the fan.but this is really something to really consider and discuss with your doc.you also really need to eliminate as much protien fromyour diet as possible as this is what actually causes the ammonia to develop.

to obtain all of your records,just start making phone calls to every place that has seen you and including any hosp stays or er vists and any place you may have been sent for any outside testing.just tell them to send you out whats called a "release of information" to you.you just fill it out,sign it and send it back to them.in anywhere from a few days to a week,the records will be sitting in your mailbox.this really really helps me tons with all of my specialists I ahve to see about many different medical issues.if I didn't stay on top of all this by keeping my own records,I would be going much more crazy than I already am.this is just some really important info that you just really need to have in your possesion.reading thru all of the records,espescailly the docs clinic notes,will really give you a much better idea of whats going on with you and your overall condition.you DO need to keep constant tabs on whats going on with regard to your condition.the docs do not always tell you everything that they hould,and most of that stuff is IN these records.you will just be a much better informed patient with having all of your own copies of your records.I also update mine by requesting them like every six months or so depending on who I have been seeing during that time.just start making those phone calls tomorrow and also just take a piece of paper and write down all the names and phone numbers of all of the docs and places you are calling and just keep it in the file you will have so when it comes to needing to update(if it has been more than a year since you signed that first release,you need to go it again as the releases are only good for one year at a time,no biggie really)but keeping these numbers all on one piece of paper just makes it a bit easier for you the next time around.

please keep us posted on how things are going,K?good luck,marcia
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Old 05-21-2006, 10:41 AM   #7
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christine307 HB User
Re: what #'s are considered high ammonia

i don't have a pcp right now i have been so busy w/ all these other Dr's. and i am so tired all the time. i just got on medicaid not to long ago and they just sent me this huge list ...all the referrals i got didn't work out for some reason or another. its just so had to trust someone w/ your health by just picking their name of a list.
and for some reason I've been having problems with my eyes.

 
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