Scared my partner is going to starve or die of dehydration in the hospital

[SpinachHands]

I'm not surprised taurine was high -- that's why I mentioned it. The body makes the taurine to remove the ammonia, which also means those building blocks can't be used by the body to make other things it needs. I would not be surprised glutamate is also high -- that would be the next link.

Another reason those might have been high is they were going through benzo withdrawal at the time. They were taking Taurine supplements because they seemed to be helping but needed up stopping as it started making the withdrawal worse. Glutamate would also be high where their gaba receptors were tanked in the acute withdrawal period.
Will look into ammonia though, is there any way for it to be tested do you know? I'm not sure it was included in the metabolomix or the gut profile tests.

 

[SpinachHands]

If there are neurologists involved and encephalitis is on the table, I imagine they will have ruled this out early, though, since hepatic causes should be pretty easy to test for.

Do you know what kind of tests they would have done for hepatic causes? I'm not confident on most of the doctors here ruling things out, so if there's anything I can ask them to do/check they've done I'm sure they'll take suggestions (the encephalitis testing was only done on me demanding it after a formal second opinion request, because they tried to dismiss EVERY symptom as FND, ugh)

 

[katabasis]

Do you know what kind of tests they would have done for hepatic causes? I'm not confident on most of the doctors here ruling things out, so if there's anything I can ask them to do/check they've done I'm sure they'll take suggestions (the encephalitis testing was only done on me demanding it after a formal second opinion request, because they tried to dismiss EVERY symptom as FND, ugh)

Yeah, FND is a wastebasket diagnosis ("we're not sure what's wrong, and we're making it your problem"), so you're definitely right to be skeptical that the doctors are doing their jobs.

The proximal cause of hepatic encephalopathy is a build of toxic metabolic products that your liver normally deals with, primarily ammonia. There is a specific blood test for serum ammonia you can do. However, since it is a result of liver disease more generally, you can rule it out with other tests like liver enzymes or albumin/bilirubin - these are usually grouped together with other common, cheap baseline bloodwork under the umbrella of a 'complete metabolic panel'. At least in the USA, a CMP is run basically every time you get bloodwork done in a hospital setting because it's a good way to just generally monitor the health of a patient and it's relatively inexpensive. If none of these markers of liver function are flagged, it's probably not the liver.

Mild cases of HE can be subtle, with few outwardly visible signs except for the mental status change. But more severe cases will generally also co-occur with visible signs of liver failure like jaundice, ascites, edema, etc. So even if it's HE but the bloodwork doesn't pick up on it, it will become obvious if it gets worse.

 

[SpinachHands]

Yeah, FND is a wastebasket diagnosis ("we're not sure what's wrong, and we're making it your problem"), so you're definitely right to be skeptical that the doctors are doing their jobs.

The proximal cause of hepatic encephalopathy is a build of toxic metabolic products that your liver normally deals with, primarily ammonia. There is a specific blood test for serum ammonia you can do. However, since it is a result of liver disease more generally, you can rule it out with other tests like liver enzymes or albumin/bilirubin - these are usually grouped together with other common, cheap baseline bloodwork under the umbrella of a 'complete metabolic panel'. At least in the USA, a CMP is run basically every time you get bloodwork done in a hospital setting because it's a good way to just generally monitor the health of a patient and it's relatively inexpensive. If none of these markers of liver function are flagged, it's probably not the liver.

Mild cases of HE can be subtle, with few outwardly visible signs except for the mental status change. But more severe cases will generally also co-occur with visible signs of liver failure like jaundice, ascites, edema, etc. So even if it's HE but the bloodwork doesn't pick up on it, it will become obvious if it gets worse.

Is it possible to have ammonia issues without liver issues? Just if I ask about ammonia testing and the drs say all the liver stuff was fine so they don't need to bother, I'm not sure whether to push for it or not. They don't seem to have any signs of liver issues either, just the odd ammonia type symptoms like mentioned above

 

[katabasis]

Is it possible to have ammonia issues without liver issues? Just if I ask about ammonia testing and the drs say all the liver stuff was fine so they don't need to bother, I'm not sure whether to push for it or not. They don't seem to have any signs of liver issues either, just the odd ammonia type symptoms like mentioned above

Well, on one hand, your partner may have elevated ammonia simply due to insufficient caloric intake. In the absence of dietary carbohydrate/fat, the body breaks down protein (esp. in skeletal muscle) for energy, producing ammonia. But usually this does not cause overt mental symptoms unless the starvation is especially severe or there's some other compounding factor. To illustrate (though of course this is anecdotal), I spent 3 weeks with virtually zero caloric intake due to fulminant C. Diff, and I also have severe ME/CFS and was mildly underweight due to recurrent C. Diff prior to this. Obviously my mental state wasn't great, but even at the end I didn't have any neurological symptoms per se. Of course, everyone is different.

In your partner's case, if the neuro symptoms are indeed due to hyperammonemia, it still doesn't really bear on the primary underlying issue, which might be MCAS or some other thing. You would still need to fix whatever that is in order to bring back food your partner's food tolerance and reverse the calorie deficit.

Come to think of it, the main rationale for wanting to test for ammonia, if you're inclined to argue the point with the doctors, is not for the sake of treating it, but rather for assessing whether the neuro symptoms ought to be considered part of the primary underlying issue, or whether they're just a secondary effect of insufficient caloric intake.

 

[SpinachHands]

An update:

Didn't self-discharge from hospital yet, but likely will be discharged anyway before the end of the week.
We spoke to an amazing private gastro on the phone on Tuesday night, Dr Ray Shidrawi, who really put together so much in the short time we spoke to him. He essentially diagnosed my partner with very likely EDS/hypermobility, which is something we've actually been suspecting for a while anyway. He explained how this can cause gut motility issues, which could be the cause of the SIBO, micronutrient deficiencies, and massively increased mast cell activity, the various consequences of which could be causing/worsening their neuro issues, dysautonomia, etc, etc. Sounds like he has a plan to first get the MCAS under control with a muti-pronged approach to cover all the different forms the mast cells can take. Then once they're able to tolerate things again without MCAS flaring, to get them on an IV and nasal tube feed, to restore those missing micronutrients by bypassing the gut. And in the meantime sorting their gut issues and trying to improve motility so it doesn't keep happening. I'm probably not doing his explanation justice, but it all really clicked and covered the whole picture, not just each thing individually like other doctors have done.

The problem is, his letter with the recommended treatment plan hasn't come yet and the hospital are getting antsy. He said it would be better for the treatments to be done while in the hospital to have ongoing monitoring, and to be able to eventually have the IV/NG, and the doctors here said when they have the letter they'd consider it. But today they basically said "it needs to come today or else we have to discharge you". Tbh, I think we both would rather get my partner home. They've been nothing but dismissed, belittled and ignored by doctors here, and we don't trust them to execute this private doctors treatment. It's going to suck having to figure out a lot ourselves at home, and not have an on-hand doctor to advise, but I don't think we'd even get that here in the hospital.


The consultant today kept pushing for my partner to speak to a psychiatrist even! Which they refused, obviously, we've heard enough horror stories about people with MCAS and ME being sectioned with "eating disorders". I explained why this is NOT a psychiatric issue, and he said "we're just exploring all avenues". Yeah ok, if we're exploring every avenue just do every test for everything ever then, why not.


It's currently 10:30pm and we're still waiting to be taken for a head CT that was supposed to be at 6. My partner is exhausted, overexerted, and really really needs to sleep. They've been woken up every night at 2am to have their Obs done. The risk of COVID and infection is really worrying (I keep having to remind staff to wear a mask). I just want to get them out of here. My partner really just wanted to be looked after, but nobody here cares about them. Hoping to get that letter from Dr Shidrawi soon so we can get started on his plan at home, in peace

 

[sunshine44]

Edit: UPDATE 20/1/25
Thank you so much to everyone who replied. While I've not had the energy to reply to most, I've done my best to read all of them and look into everything recommended. Nothing happened over the weekend as there are no doctors. On Friday, the drs here finally contacted a bunch of the NHS doctors I'd recommend that specialise in MCAS, but really it doesn't seem like they are convinced this is MCAS, despite not having spoken to any doctors with experience with MCAS yet! Will see if they've had any responses today.

We honestly think my partner will get better care if we go home and go private. Some private drs I contacted won't interfere while my partner is under hospital care, and now they're not doing the IVs the hospital is literally providing nothing. My partner has been able to drink more water and have some nutrition drinks over the weekend (on a schedule and titration we had to come up with ourselves). Since starting eating/drinking again their MCAS is flaring up a bit so definitely still urgently needing help. But we've realised we are not going to get that here. With the current trajectory they should be able to self-discharge on Tues/weds. Still need to find out if they will be provided transport if they do that however.

Thanks again everyone who commented! Hopefully next update will be once we're at home.

~~~~

Sigh.
Thinking of you guys.
After 21 days in hospital in November I begged dr to go home too. There’s so little they can seem to do for these states. Still working on my plan but praying for your partner. I’m so happy they are tolerating at least some fluids and nutrition. But understand all too well what you face.

It’s surreal, isn’t it?
All these big drs so in the dark over patients like us. Just bizarre, at best. I thought hospitals treat ALL illness.

 

[sunshine44]

Also, you are so amazing
I cannot imagine how different my hospital experience would have been if I had my family with me. They, like the drs, just don’t seem to care about my case

Kudos to you both.
And truly amazing you found a gastro with a really good sounding plan!!

 

[SpinachHands]

It’s surreal, isn’t it?

That really is the right word for it. We used to say "it's always worth asking the GP or 111 for help" until experience made us realise that was useless. Then we'd say "well it's definitely worth pursuing this clinic, and doing all the calls and assessments and home visits they need so that they can help", but also learned pretty quickly that after jumping through all their hoops, they won't help either. So up until very recently we'd say "NHS can't help, unless it's an emergency". And now here we are, acute emergency, IN the hospital, and they're still not helping!! So now once we're home that's it, apart from the GP for repeat prescriptions we're not interacting with non-private healthcare again, no matter what. It has been truly baffling and absurd to see doctors looking at my partner and their suffering and just, ignore them. My partner is so miserable, they really feel like nobody cares about them except for me, like they've been left to rot.

I cannot imagine how different my hospital experience would have been if I had my family with me. They, like the drs, just don’t seem to care about my case

Thank you, and also I'm sorry. There have been so many times over the past year where I've been afraid to think what might happen if my partner didn't have me. But I know that's the reality for so many with this illness, and just makes it all the more cruel how little medical and social care there is.

When I first rang their GP a year and a half ago to say they couldn't get out of bed anymore, they put in an urgent referral to social care. They rang three months later and asked "so if they can't get out of bed, how are they managing to eat? Is someone bringing them food?" If my partner didn't have someone looking after them, they would have starved to death by the time that question was asked. And now our government wants to make even more cuts to disability benefits and support!! Christ sorry for the rant, I have just become a much more furious person over this past year.

 

[sb4]

Another option could be getting your MP involved.

 

[linusbert]

"we're just exploring all avenues"

this is such a lie, what cheap pitty practices medical practice developed to lie to patients is disgusting. dont trust those people. always recommend your complete file when going home including hand written remarks.

We spoke to an amazing private gastro on the phone on Tuesday night, Dr Ray Shidrawi, who really put together so much in the short time we spoke to him.

indeed this looks really plausible. what to do about the hypermobility?
i also suffer from multiple stools a day from 2-4 times a day, though recently it got better to only 1-2x a day. consistence can be normal or not.
what i noticed when i was taking that 'weightloss' thingy , its same stuff as ozempic, my gut motility was so slowed that i did only go once.. but my stomach was so frozen it seamed like never empting. was really hard to eat anything.
problem are those injections are to last a week, so its strongest on day 1 and least on day 7. if there was something like this oral to take daily maybe it could slower it.
but hypermobility also can be due to electrolyte imbalance.


EDIT: i think what improved my stool and speed of emptying lately was healing mineral water with high amounts of hydrogencarbonate , like 1,8g per litre. i drink 0,7 bottle over the day. it increased my urine ph and lowered my meal-time-to-toilette significant.. but i also feel it neutralized my stomach acid too much that i need to pause a few days, because now it feels like i have a stone in my stomach.
similiar like with what i had with the german "ozempic".