British Liver Trust
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PLEASE HELP ME!

I’ve had signs of portal hypertension, I was getting a squeezing sensation in my upper right abdominal area and my heart was beating fast in my ears. Had this over a few days around 5 days ago. Went to docs who refused to do anymore blood tests because I had some done a few weeks ago and had ultrasounds a few months ago so not taking any further. A few days ago i went into a state of confusion where I wasn’t coherent, I had HE, I was drifting in and out of a semi conscious state. an Ambulance was called, I managed to tell them eventually that I thought it was HE butmy partner told them ive had liver bloods and ultrasound done and all was ok but I suffer from PTSD and had mental health issues. I went to a and e and asked them to test for my ammonia levels when I’d come around and was more coherent. Instead they refused to do blood tests and called the mental health team. They think I’m having a breakdown but it’s my liver. I’ve never experimented anything like it. They are refusing to investigate my liver further as my last bloods etc were fine.

Since the portal hypertension symptoms, I have had a gradual buildup of fluid in my tummy and legs, the fluid on my tummy isn’t it’s not hard but getting bigger every day. My kidneys at the back are hurting too. They said it wasn’t Ascites as it wasn’t hard. My wee is brown and there’s been blood in my stools, my fingers have clubbed and I have spider veins on my breasts too as well as muscle twitches. went to a and e again yesterday who just called mental health team. Nobody is listening to me and my symptoms, they think I’m going mad. I know I have cirrhosis but the hospital are not giving me a CT Scan or checking my ammonia levels because they said cirrhosis would have shown up on ultrasound! I really need some help because they are thinking my mental health issues are the root cause when I’m seriously getting all of these symptoms. I keep getting bouts of confusion but everyone thinks it’s my mental health and ITS SERIOUSLY NOT. I have mild PTSD, never been like this. Nobody will help me and nobody is listening. I feel like I’m been left to die as nobody believes me because of my mental health issues! I don’t feel like I’ve got long and nobody will do anything!! Please help

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You would be the first person I have heard of who knew they had portal hypertension through symptoms I had none !!!! The fluid buildup would be hard if it was ascities your symptoms sound like you have been reading too much on Google.... Don't get me wrong your obviously worried about something but your doctor's are not concerned and that must be because your bloods are ok so you should take that as a good sign also most of us are oblivious when h.e was coming on its others in our lives who recognised... You may have some kind of infection but I don't think you have any liver disease

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Totally agree with you jojo.i was going to ask then how do you know what symptoms to look for with portal hypertension? As i would not have a clue !

Your doctors have done all their tests , i understand your frustration but it could well be a kidney infection? Pain in the back and dark urine. I have had 4 bouts of ascites and my tummy was hard and soo stretched. Even my belly button had disappeared. Try not to over think too much. Seems like you have maybe anxiety or panic attacks..

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Me neither.

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morning I had a lot of the confusion you were getting and bad and ive had it two years to point where my gait gets thrown off , I wonder, and now I have attacks where its like a mini seizure in my head that makes all my muscles lock and profuse sweating and gastritits etc. only one of my liver functions were high and I insisted it was liver making me sick but like you nothing showed on the scans for my liver. I found out it wasn't my liver afterall. its my colon. I got diverticulitis with a bad pocket infection of somesort and now im going for a colonoscopy virtual ct as I cant do a normal colonoscopy as to much risk with an infection of that making it worse. I go in a week. if its as bad as the dr thinks I might have to have a resection. also my vit d levels were also nill and void at 17 so so very low. it also causes muscles twitching and pain as well as nerve pain and a lot of head thinkgs like confusion and brain fogs etc. I started taking vit d 3000 mg a day and have been for a year now. the head symptons are getting much better and some of the bone and muscle and nerve pain have eased off from getting my vit d back to anormal rate. anyway try to get your family dr or the pysciatrists to check you vit d as it can cause all the symptons your having plus even some gut issue as you need vit d for every organ to function fo its full capacity. anyway just a few ideas to try and you may get a bit of argument if dr doesn't know a lot about vit d deficiency but I seriously feel about 50 percent better since ive been getting closer to bringing my level to normal. also vit d is good for liver as well as vit e so wouldn't hurt to add it anyway but get it checked could be your answer. I also suffer from pstd and other emotional issues but that it not what caused me to get this sick and sometimes drs like to try to pin a wrong diagnosis on people as it is easier than doing all the tests and listening to the patients needs.they don't really have the time to care

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also forgot drink water and lots as dehydration severe can also add to the issue and severe dehydration was also part of my problem and dehydration can cause you kidney to hurt a little as well as very dark pea mine was dark orange but now that I drink 5 cups of water and 2 cups of pedialite everyday with my vit d my symptons are easing plus my pea is a lighter yellow now. my kidney functions and scans all normal. it can also cause muscle spasms and head fogs when dehydrated. do some research on the vit d deficient and the dehydration symptons and see if helps good luck with all the docs

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I had no idea I had PH, I honestly think you got wrapped up on reading the internet too much.

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I’ve definately had portal hypertension, my heart rate has changed from 90 bpm on average down to 62 bpm which means my blood pressure going to kidneys has dropped. since I had this episode I have been gaining fluid in my stomach tissue and my breasts have doubled in size over past few days. I’ve also got pale stools and Terry’s nails as well as spider veins. I’m showing signs of hepatorenal syndrome and docs aren’t even doing anything.

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Hi Bd22, hope this finds you well. You are on the right track. Keep it up. Stay focused- please try to watch your diet!!! For starters **No salt. (At least keep it under 800 mg. A day. Ask your doctor...) That and lactulose help me. Itake spirolactone and furisomide along with some very helpful vitamins for ascites, alpha lipoic acid- I really do know how you feel, it is so unfair and sooo frustrating. Some People/doctors seem to want to just sweep people aside. Don't let them. Stay calm. Have/take clear notes when you do spe

ak/see someone. Contact an advocate of human services to assist/help you (?)

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