Ammonia Result

[ktan49]

Good Afternoon all

Had some news in the post today, had letter from gastro consultant with results of ammonia test, the result is 64 umol/L , it confirms that I have HE. My ALT has fallen from 180 to 55.

My Gamma GT has increased to 172.

It says that he wants to trial me on Rifaxamin 550mg twice a day.

The letter was originally sent to my GP.. they said to call GP at 5pm to see if prescription is ready.

At least this confirms my confusion etc...

[Hidden]

Please don't forget to inform the DVLA of your condition. Your motor insurance will be invalid if you do drive. Just one of the many problems associated with this condition.

Good Luck.

[Barnetaccounts]

Hi Ktan,

I was diagnosed with HE following episodes of confusion.

I am on Rifaxamin but my GP refuses to prescribe it because of the cost and in my case it is hospital issue only.

I believe it costs about £300 per box. I have not had any episodes since taking it.

Good luck

Ray

[ktan49 in reply to Barnetaccounts]

Hi Ray

Thanks for reply

I am having the same issue, the GP phoned me yesterday to say even though they had a letter from gastro consultant saying to give me rifaxamin 550mg, it must apparently be given directly from hospital for the first month then after that it can be continued to be prescribed from GP. My GP left a message regarding this with my consultants secretary so who knows where that will go, I got my Queen Elizabeth appointment on Thursday anyway so I guess they will prescribe it to me.

[AyrshireK in reply to ktan49]

Make sure you get a prescription from QEB and uplift it whilst you are there. We had the same issue, Edinburgh prescribed, GP refused so we had to make a special trip through to Edinburgh for a prescription and tablets and then finally the GP did start doing the repeat prescriptions.

Fingers crossed for your appointment on Thursday and that you get all the necessary answers.

Katie

[ktan49 in reply to AyrshireK]

Thanks Katie, I will be sure to get prescription from them, when you say uplift it what do you mean? Sorry dumb moment.

My consultants secretary phoned me today and said I can pick up my prescription at hospital reception... which I did, and then my local pharmacy had 1 box left luckily, 56tablets. He didn't mention taking lactulose with it though?

I bumped into my consultant on the way out of the hospital and he did this whole thing has confused them too lol, he did mention something about the possibility of non-cirrhotic portal hypertension? No idea.. roll on Thursday!

[AyrshireK in reply to ktan49]

I mean physically collect your tablets from the pharmacy. Pick up / uplift.

[AyrshireK in reply to AyrshireK]

Yep you are an enigma, HE without obvious cirrhosis so hopefully they are going to find out why you have portal hypertension without cirrhosis - maybe a blockage somewhere or something like that. More tests to come but hopefully some answers.

Rifaximin and Lactulose the usual treatment but then again if you don't have cirrhosis that might be different.

Best wishes for Thursday.

Katie

[ktan49 in reply to AyrshireK]

Well I completely confused the prof. At my appointment yesterday.. had another Fibroscan prior to seeing him which was normal apart from massive amount of fat. He arranged for me to have quite a abit of blood taken to check for rare diseases or something.. including HbA1C, PT (INR) and various others along with full bloods. He's arranging for me to have liver biopsy done at local hospital to save travelling all way over there. He gave me a leaflet with info on that too.How long did you guys wait for your biopsy if you had one?