How is HE diagnosed

[Charlie1979]

Can anyone shed light on how the Drs find out if you have HE? I’ve spoken to my consultants secretary and asked if I’ve been tested for this as I feel ( and husband does too) that I seem to tick most of the boxes. Thank you.

[TT-2018]

I had a couple of Electroencephalogram (EEG) procedures. It is carried out by a specialist and involves attaching over 20 electrodes to your head and asking you to perform various tasks, your response is measured.

Good luck with your treatment.

Mark

[Charlie1979 in reply to TT-2018]

Thank you. I was told scan or blood tests.

[TT-2018 in reply to Charlie1979]

They test your ammonia levels etc, the EEG sees how your brain is functioning.

[Charlie1979 in reply to TT-2018]

Would they automatically refer for that if bloods show high levels? Sorry for all the questions

[TT-2018 in reply to Charlie1979]

I am not sure if it is automatic, that would be determined by the Consultant.

[Bootandall in reply to TT-2018]

Hello Mark,

Can I ask please why you needed more than one EEG? I was told by my liver specialist that the blood test for ammonia wasn't that useful, for whatever reason, which I don't remember.

[Thistle09 in reply to Bootandall]

Blood samples for ammonia need refrigeration (put in a cold chain) and testing within a few hours. I have had several such tests and the samples were either taken to a lab without proper equipment or incompetent technicians. Your medical team probably knows this, and may send you to a lab where the test will be done properly. I have been told that the best defense against Hepatic Encephalopy is to keep your body cleared of waste on a daily basis, even if you have to take Rx diuretics and Rx lactulose. Keep it all moving! Adult diapers might be needed.

[TT-2018]

It is to do with records between the different Trusts. The initial one was carried out at the Royal Surrey, I was treated there for 18 months prior to transfer to the Transplant Hospital, The Royal Free. They performed another one to add to the records held there, after I was listed for transplant.

[Bootandall in reply to TT-2018]

Thanks ! I thought maybe they were following up on something they found.

I was very surprised that I was prescribed lactulose and rifaximin on the spot, without any tests, after the specialist started asking my husband the questions! I don't know what to think, but I wasn't that impressed. I have been feeling a bit floaty, a little like you would when one ear is stuffed, and also feeling a little irritated. But I am taking my meds and will see the doctor again on Tuesday.

[Bootandall]

Hi Charlie,

I was diagnosed after my husband told my liver specialist that I was hospitalized for an electrolyte imbalance (high or low potassium, can't remember which) which caused my heart to flip flop. I do remember at that time being irritated at my husband, but was surprised this was considered later in the diagnosis! I have been feeling irritable again lately and slighty dizzy, but I have a mild case of shingles right now too, the itch is a bit maddening.

[Hidden in reply to Bootandall]

Hi Boots

Was just browsing HE and came across your old reply to Charlie and was wondering if your now fully recovered from your mild shingles which can be exceptionally painful and last upto 8 weeks!

Hope your ok on this point now.

Love Shropshire Lass x

[Bootandall in reply to Hidden]

Well, my liver specialist said it was shingles, my gp said it was eczema. It flares occasionally, in a strip on my flank or back, on one side. I use a prescribed cream if it really bothers me. If I don't touch it, it itches less, and it just goes away. I figured it was due to having a low immune system, whatever it is. It doesn't hurt, but it does tingle before it manifests. Hell if I know what it is.

[Hidden in reply to Bootandall]

Hi Boots

Firstly lovely to hear from you again.

On the eczema front this I know well as I come from a family who suffered with the dreaded rash which can be extremely very bad and painful or mild.

My younger brother was born with it and was bandaged almost from head to toe with septic eczema which was exceptionally acute until he reach the age of 7! He's now 57 and to look at him he looks fine, but to be truthful he still has to bath in special soaps and covers himself with numerous creams and ointments daily. I too suffered with it on my back, legs, arms and face but only mildly which I grew out of, however once in a blue moon it may raise its horrid head so I do understand how you must have felt or still do!

[Hidden in reply to Bootandall]

Boots

I forgot to mention that certain foods or stress can increase the symptoms. My brother couldn't eat eggs for years. His clothes and towels had to washed separately. I dont think this happens anymore.

Take care

[shooli]

Hi,

I was diagnosed after something called a "critical flicker function test" (if I'm remembering it right).

I had to look into a funny looking welding goggle and press a button when the flashing light went solid, or the solid light went flashing, can't remember which. From my reaction time they somehow deduced I had HE.

1yr post Tx, it's definitely improved, I'm back to walking AND chewing gum at the same time

Good luck

Steve