Peter

[PastaLover53]

Up to the doctors again today. Went through my symptoms again. This time exposing my extreme and worsening mental confusion. Unbelievably he refused to prescribe me anything for this. Have now been referred to see a Neurologist and have another ultrasound arranged. Both NHS referrals so more waiting time! So I am having private tests and NHS tests. But yet again no diagnosis no treatment!

[Worrywart1985]

I’m sorry for the health difficulties you are having. What are you wanting to be prescribed? If the doctor doesn’t know what is causing your symptoms, they likely wouldn’t know what to prescribe and prescribing willy nilly could do more harm than good. If your confusion was due to ammonia build up, they would likely prescribe lactulose. But if they’ve tested your ammonia levels and they are normal, prescribing lactulose would do no good, it would just make you poop a lot.

Hopefully they can get to the bottom of what’s going on with you soon

[Fibro2021 in reply to Worrywart1985]

With all due respect, your comment contains several common misconceptions about hepatic encephalopathy (HE) and lactulose treatment.

A doctor may not always know the exact cause of a patient’s symptoms, but that does not mean they don’t know how to treat them. In medicine, empirical treatment is often used when there is a high probability of a particular condition. In the case of HE, delaying treatment can worsen the patient’s condition.

A normal blood ammonia level does not rule out HE. Ammonia levels fluctuate throughout the day, and a single test result may not reflect the true situation. Additionally, neurological symptoms in HE are not caused solely by ammonia but also by other neurotoxic substances that can accumulate when liver function is impaired. Lactulose can be beneficial even when ammonia levels appear “normal.” It does not just “make you go to the bathroom more often” but reduces ammonia absorption in the intestines, alters gut microbiota, and lowers other potentially neurotoxic compounds. Moreover, in patients with covert HE, lactulose has been shown to improve cognitive function even when ammonia levels are within the normal range.

The bottom line is that dismissing HE based on a single “normal” ammonia test is a mistake. If a doctor has not ruled out HE, it makes sense to try treatment, especially when the symptoms are consistent with this condition.

Additionally, with low muscle mass (sarcopenia), symptoms of encephalopathy can occur even with “normal” ammonia levels, since it is not detoxified in the muscles, unlike in people with normal muscle mass. Therefore, with sarcopenia it is wrong to focus only on ammonia levels in the blood - clinical manifestations are more important!

[Worrywart1985 in reply to Fibro2021]

I understand what you’re saying but also as a nurse, see both ends of the spectrum A LOT! Providers get themselves ina world of trouble if they don’t have a clinical reason to prescribe meds. You can lose your license and job and families ability to be ok. Unfortunately there are so many overlapping things when it comes to health issues, including and especially with liver disease. No medical markers or scans etc are indicating liver disease and a provider still prescribing for that and then there is an adverse reaction, they are liable for that. Best thing I can advise is continue to see different doctors and avoid alcohol and have the most liver friendly diet possible.

[Fibro2021 in reply to Worrywart1985]

It seems to me that it is better to test for ammonia and at least close the issue in this direction. But this is my personal opinion. I don't think that the symptoms of hepatic encephalopathy depend on the number of consultants.

[Worrywart1985]

never said anything was based on number of consultants. Continue testing. Treat account do what you find from testing. Just because the member in question has confusion does not mean they have built up ammonia. It could be many other things. Stop trying to fit it into your liver box when they also aren’t receiving any tests that test positive for liver disease. Sometimes symptoms are something else