Hello Ladies and Gents!
I'm writing to You because I need the information if anyone of You also gets diabetes?
I'd never had a sugar problem but three days ago I had an epilepsy attack while driving the car and the guy from the ER tested my blood's sugar level 'cause I also had other symptoms of hypoglycaemia which are THE SAME as PSC attack symptoms (distraction, fatigue, memory and speech problem etc.). After 2h of eating a lot of sugar my body started to swell up to the point that in the evening I had to visit the hospital again because I couldn't walk anymore. Unfortunately after doing liver enzymes blood tests etc. they found everything normal...
I didn't find the solution yet. My body swells up every few hours like a balloon, my head is killing me, I got coma attacks and I'm trying to maintain my blood sugar level but it's hard as hell.
Have anyone of You came across that kind of problem?
PSC attack (cholangitis) symptoms would involve fever, chills, headache and probably upper right quadrant pain (URQ). A cholangitis attack or episode is when you have infected bile ducts. What you describe as epilepsy sounds different than that of a cholangitis attack. The swelling sounds like acities if it is in the belly and legs. The blacking out could be from Hephatic encephalopathy (build up of toxins in the brain),which also have symptoms of distraction, fatique, memory, disorientation etc. Hopefully you have a good hepatology team that can help you with these things. It is strange that you would not have elevated liver enzymes, one of the tell tail signs of PSC. Something does not seem right about this situation and your diagnosis. You can have a blood glucose monitor attached for a weeks time to learn what is happening there and rule that out. Hope that helps you.
First of all, thank You for the reply.
We misunderstood and the reason for that may be that my language skills are getting much worse right now, sorry for that.
Normal PSC symptoms like fever, chills, headache and pain are my every-day reality so I don't pay much attention to them anymore. What I wanted to describe is the fact that my PSC is in the stage where hepatic encephalopathy came to the game and actually this is much worse than the PSC by itself - trust me, having massive brain problems can really destroy Your life. Like I can not remember what I wrote at the beginning of this post, for example.
The main reason why I wrote here is that I'd really love to know if anyone is also having the low blood sugar level which could indicate pancreas problem which, as we know, can be the result of having PSC. So, long story short, I just want to find out if my distraction, fatigue, memory, disorientation etc. problems come from HE or from diabetes which could be hidden for the last few years but when we found out about PSC we matched all of the symptoms with it and absolutely NOONE tested my blood sugar level before.
Also I didn't say my liver enzymes were not elevated - I said they were normal which for me, and us, means elevated :)
While I have not had any blood sugar problems, when I get LUQ twinges, I immediately think-pancreas.
From what I have seen with my mom and low blood sugar, it does mimic HE. I had not connected the dots the way your did, ninja, to see the connection.
Seems strange your blood sugar was never tested. It shows up on my bloodwork, so I am glad they test for that.
I think it would be hard to tell if your distraction, memory, fatigue etc would be coming from HE or low bs. I would want to be carefully monitoring my bs, what I eat, maybe see a nutritionist or diatitian. I’d also want my HE to be carefully monitored . Check in with close friends or family members and see if they notice anything concerning. Fatigue is a tough one too because that is just part of PSC overall. Maybe Keep a log of how you are feeling or events. Take that record to your hepatologist/s and let him/her/them know of your concerns .remember that you must advocate for yourself constantly.
My partner too was only tested randomly for glucose issues. Because HE is on our radar now, we were concerned that it could be his bs , not HE. So , we requested it be monitored. Sure enough some swings seem to happen intermittently but the endocrinologist does not believe these are a big enough deal to cause tremors. Needle in a haystack it feels like sometimes. Hoping the brain scan may rule out HE for sure. Will keep you posted.