Does anyone of you has problems with ammonia levels?

[littledragon23]

Hello,

I only got diagnosed with PBC a month ago and was started on Urso straight away and my LFT's started to improve drastically after that. However, they did check my ammonia levels as well and the first set which came back was high and because of that they did repeat them to see whether it was a mistake by the lab. This time the ammonia came back even higher than the first one. Apparently, you only can get such high levels when you are already cirrhotic which I don't seem to be. My gastroscopy was ok and didn't show any varizes, nor portal hypertension. My repeat liver US showed a virtually normal liver and a few mini gallstones with the biggest at 4 mm. The only symptoms are, that I have this foggy feeling in my head, with slight underlying headaches and I continue to have some minor dizzy spells. I suffered very bad virtigo a week before my first liver appointment.

I still suffer left sided abdominal pain with nausea. Although, my appetite has improved a lot I hardly tolerate fat, but I managed to keep my weight over the past few weeks.

So, now I am booked for an urgent abdominal CT to see what is happening in my liver.

When my ammonia was first high and due to constipation after starting on the Urso, I also got started on Lactulose 2x day.

Has anyone of you had problems with ammonia levels?

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I'm not familiar with the test so can't say if I have had it since I started itching in 2010 and was that year diagnosed with PBC. There are some bloods I had during 2010 (copper was one for Wilson's Disease) which I have no print-out to check. All I know if this was done, it was fine at the time or I'd have been informed.

Are you on any meds that could cause this at all or as daft as it seems, have you done some muscular exercising as I have read that ammonia can build up in muscles that have just recently been used thus giving a higher reading.

I cannot say more as it is a new one on me.

[littledragon23]

Thank you for your answer peridot,

no I am not on any meds which could cause this and I have not changed my habits in exercise. Although, I read that Omeprazole could exaberate ammonia levels. However, I started that AFTER I had already high levels.

I think they might tested for it, because of my dizzy spells and vertigo which is associated with high ammonia levels. I have also been told that I have mild encephalopathy.

I think I will wait for the liver CT on Thursday and what my doctor has to say.

[Julez1961]

You are describing everything I am going through at the moment. I have been to my Pre Liver transplant appointment today and I am suffering from a build up of ammonia as I have developed encephalopathy. I couldn't remember who my husband was and I also drove past my house one day I was lost. I have mild headaches and dizziness. I am also suffering depression due to being so ill for the last 4 years. I am moody, angry and tired all the time. Apparently the ammonia builds up because my liver is rock hard and it can't go through it so it goes around to your chest and your heart and goes to your brain. I was prescribed Lactulose 3 times a day and have an Ultrasound and more bloods booked in 2 weeks. I also have a terrible appetite, I want to eat but start and want to vomit.

I hope you are feeling a lot better ad it has been 8 months since this post.

[littledragon23 in reply to Julez1961]

Hello Julez, sorry to hear that you are feeling so awful. Yes, I do feel a lot better since I wrote this post and a lot has happened since then.

Although, I do not have portal hypertension they found that I am cirrhotic already. The explanation I was given for my problems with the ammonia levels is similiar to yours and they also think that I do have some "natural" shunts in the liver which they haven't been able to find yet.

Since being on the Lactulose *shudder* (the most vile medication I have ever been on) (30-50ml/daily divided into two to three doses) we seem to be able to control the levels much better. My highest level last year was 290 and currently I am around 50-70. I only had very mild hepatic encephalopathy which appears to have resolved for the time being. I still get the odd brain fogg with a funny taste in the back of my throat, but nothing compared to last year. I felt lost quite often, but I never had the problem of not recognising a family member or friend, which must be utterly awful for you and your husband.

However, when my levels were really high last year I hardly could eat, because I felt so severly nauseated and actually did vomit from time to time. I lost 13 kg in 2 month, because of that. What worked well for me during that time was small, plain meals every 2-3 hours. I had a lot of boring food during that time as I was especially sensitive with anything containing fat. Bananas, rice cakes and corn thins were some of my staples during that time. I still suffer regular nausea (and vomits from time to time), but after such a long time I am much better at managing it. I eat very regular and I always have little snacks araound. I found on the days where my nausea is very bad that it helps to drink Vegetable broth with grated ginger in it and if I just stick to old plain steamed, boiled (whatever) vegetable in conjunction with some wholemeal rice, pasta, grains etc. On such days I am not good at managing any dairy, meat nor fish. I think you just have to try out what works best for you.

I also have been seen by the liver dietician last year, which I found incredible helpful and she was the one who suggested the ginger (which could be in any form, but I prefer it in broth).

I wish you all the best and hope that things will work out well for you

[Julez1961]

Hi littledragon23

Thank you for your reply, I'm glad you are feeling a lot better, I am not great today, I had a bad night vomiting and awake a lot, did you spit up any blood? Maybe its from the recent banding I had done in my oesophagus and vomiting.

I was having ginger tablets like they take for motion sickness, but they work sometimes and don't others which is very annoying. I have such a headache today and blurred vision and feel nauseous. I think I'll try get some sleep not that I'm very good at it! I might get back on the soup again.

Thanks keep well Julez

[littledragon23 in reply to Julez1961]

Oh mei, it sounds like you are having a very tough time Julez. No, I never spit up any blood when vomiting and I do hope that you went to see a doctor as soon as possible after this. I just saw that your message is already 2 days old. I don't know enough of banding in case of varices, so I don't know how long after you would bleed. However, I do hope you feel a bit better when receiving this message and I do hope that everything will go well with you.

[Julez1961]

Thank you littledragon23 is nice to wake up to a message and find someone who cares enough to take time to write to you. I am just existing at the moment certainly don't call what I am going through a life. I do enough every day to get by. I really don't think it will be long before my liver fails again. I was next on the list 4 years ago but all of a sudden my liver picked up enough to function a little. We saw a short film written produced by a man who had a liver transplant called The Dinner Party it was about 8 people who had all had a transplant and their story. I sound like I am at the stage of one of them a lovely lady who received a transplant not long after. If you can find it on the Internet it is very interesting it is in Australia and they are patients at the Austin Hospital which is were l go. It sounds like you are back in track and even working which is great I haven't spent more than 4 hours at the Hairdressing Salon I own, lucky I'm not a hairdresser is have to sack myself. My daughter manages the place with other staff. I try my best to keep the bookwork up to date but have to have a real go at it as soon as my brain clears. Our suppliers are great all knowing as soon as I haven't paid a bill it's because I'm back in hospital and still supply to us.

In the film they describe the difference they feel the moment they awake from the operation and their body is functioning. I want to feel like me again. I have 4 children aged between 22 and 30 and want to be the life if the party that used to be.

I hope this message makes sense it has taken me 45 minutes to write it because of my encephalopathy.