Undiagnose d liver failure lead to pro... - British Liver Trust

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Undiagnose d liver failure lead to probable endometrical canser

Hello. It's awfull. It is like nightmare. I can't believe that all this is happening to me. I have already been sick for 8 months . At the end of march I took antibiotics for 7 days. One week later I stopped taking them I developed acute liver failure. My symtoms were intense pain, nausea, sharp weakness, tremor in hand, mental confusion. Soon I developed I intracranial pressure. I lost extremely 8 kg . Was hospitalised twice, they diagnosed me with cholesistytis in first hospital. It didn,t help , 5 days after again ambulance, second hospital, again they diagnosed me with cholesistytis. No improvement. Liver enzymes were normal. But I developed HE in the second hospital.I was not taken seriously. I was discharged. Two months at home in a poor condition, high intracranial pressure . Since september I had pain in my pelvic, due to inability of liver to eliminate estrogen . It turnes to toxic form and lead to cancer. My organs are swallen, painful, my uterus is enlarged. Recently started to have pain in my breast . It is not my fault that I was misdiagnosed. All I want is die. Because even if they finally figure out cirrhosis, I won't be eligible for liver transplant. With cancer they don't perfom liver transplant.

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Firstly you have come to the right place for support.

I need to tell you that I do not know anything about your condition so cannot tell you what happened to me, or indeed offer you sound advise.

However, I do have cirrhosis and liver cancer and I am on the transplant list currently.

So that should put your mind at rest if it is diagnosed for either of those things. I know it is all scary but try to hold on have faith.

However, I am sure there will be lots of people out there who can help you more.

The replies will come in.

They were all there for me when I was in a really dark place.

So stick with the site, it is the best life line I have every known.

Jaycee

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Thank you, Jaysee. Words of support is so encouraging.

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Hello Svetlana, first of all may I commend you on your English skills. I take it your are Russian. Welcome to this site. I am so sorry to hear about the nightmare you've been having to endure. Life sometimes really isn't fair.

Some of the blood test carried out to identify liver damage aren't always reliable. As you might know by now, the liver is responsible for carrying out over 500 different functions so not all problems may show up on a simple blood test. Having said that, a skilled consultant maybe able to identify certain problems by monitoring and seeing the whole picture.

As the liver doesn't have any pain receptors, it can't always tell you when something is wrong. Normally when the liver becomes damaged it will have an impact on other functions within the body. I this case it's your Gallbladder. Contracting stones in the gallbladder should lead any Gastroenterologist to look further at the liver for possible answers. To just rely upon a simple blood test is in my opinion just irresponsible. What any good doctor should be doing is identifying to cause of the problem.

I should point out that these are my personal opinions and that I am not medically qualified to make a general medical synopsis. As soon as the liver had been diagnosed as being the problem, then your case should have been referred to a hepatologist for further investigation and treatment.

Please don't give up the fight, I'd like to think you are stronger than this. I don't know how things operate in Russia, but if this situation was to occur in the UK, then a patient would be demanding a second opinion, and insisting on seeing a Hepatologist.

As regard to cancer. In the UK, if the cause of the cancer is the liver, then a transplant would be considered. If the liver cancer was a secondary site, then a transplant would not be considered, as the source of the cancer would most likely infect a newly transplanted liver, so they just wouldn't risk it.

I think what you really need, and deserve is for someone to sit down with you and explain what is happening, and what they intend to do. It sounds like they are treating you terribly. Is there anyway you can complain?

I wish there was something I could do for you as your desperately in need of professional help.

Please let me know how you get on, and don't stop fighting, never give up. You are stronger than that.

Good Luck,

Richard

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Richard you are a God send on this page your words are so sincere I understand that u are no specialist but to someone going through this with my husband I look forward to your sense if that makes sense

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Thank you so much for your kind words. I'm sure my inspiration and wanting to help others comes from my liver donor. I know it sounds silly, but that act of unselfish kindness is my inspiration and driving force.

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I'm at this moment so worried he so swollen with fluid I don't know whether to get him admitted as otherwise he OK what a turmoil last time I rang ambulance they looked at me as if to say is this an emergency he was diagnosed with HE scary stuff

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Sadly you can't ask or expect a hospital to admit someone just because you may feel that they should. He'd have to be examined first, and someone who is medically qualified will be able to assess his condition. Bed space in hospitals is in great demand at this time of year, and each case has to be judged on it's own merit. HE isn't regarded as being a medical emergency, but as it is a mental health issue, a patient could be considered to be at risk to themselves or others, which in turn would warrant medical intervention. Ascites is treated as an out patient appointment so once again isn't normally considered as an emergency. Are you far away from a hospital? Could you make it to A&E by taxi? Failing that. You could call NHS 111 and ask for their advice. At least your call will be logged and a record made of your concern.

I wish there was more l could offer you, but sadly a Saturday night in any A&E is going to be really busy. I hope you find the help you require.

Best wishes.

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I'm going to try ride it out if he gets worse I will have him admitted I agree with you totally there should be alternative help available

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Richard, thanks a lot for you kindness. Sometimes I think that I was punished by God. So I was put in a situatuon where I realize what is happening to me but could do nothing. I tried to complain, I wrote to health ministry, they answered me that I had been given all the needed help. I have come up with many doctors. The lost one from Moscow, she seemed to me very professional and intelligent, she listened to me carefully. She suggested Wilson's disease firstly, I made blood test to look for ceruloplasmin, and checked urine for copper. Tests came back normal. So it is not genetic Wilson's disease. And she said that she doesn't know what to do, that she hadn't encounteted such situatuons. I also have dyspnea, from time to time, fluid in pericard. Last CT scan showed enlarged liver lymph nodes. As many people say MRI and CT often are not reliable in detecting all cases of liver damage. Recently I want to Moscow to carry out other investigation which is called scinitigraphy. It evaluates how hepatic cells work. They inject radiotopic substance and look how it distributed through the liver. It showed that big part of my liver has poor absorbtion, and and that there are so called dead zones, the biggest 2 cm *2 cm, where substance was not absorbed at all.

And this is the only scan which showed diffuse changes, left liver lobe enlargment. Ct and MRI didn't see it.

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I think you'll agree that the human body is a wonderful and often mysterious marvel. Sadly medical science and our understand of how it all works is still continuing to grow.

Doctors all start off their carers as being people of medical science and their knowledge continues to grow day by day. However, some of these people believe that they know it all. I think when something like your condition comes along, they can become completely stumped and frustrated. It's like their throwing their hands up in the air and saying, "I don't know". Instead of treating your condition as a fresh challenge, it is easier to just walk away and do nothing. This is where I believe the person of science now just becomes a doctor, If I had been that person of science, I would continue to search for answers and try to unravel more of the mystery's of the liver. You are after all unique and any decent doctor should have accepted your challenge and sort to understand more of what is going on. I take it that Liver research is still ongoing in Russia, just like everywhere else.

I really don't know how best to advice you on your struggle. at the end of the day you just want answers and to understand for yourself exactly what is going on. This must be very frustrating for you.

I wish you good luck with your quest. (I am so impressed with your English skills).

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I am very happy to hear comliment about my English,. Thank you. Yes, all in our body is interconnected. But conerning the liver many doctors have missconseption. For example " You are not yellow, this means , your liver is ok". Or that liver enzymes should definetly be elevated, or if you had HE and intracranial pressure you would definetly end up with coma. Even people of science are not aware of many different forms liver disease can take. For example, I contacted with Roger Williams , professor, from London . He said that you can't have hepatic encephalopathy without showing up on blood tests. But in my case the opposite is true. Many scientists are so distant from real people with their diseases. Even, for example, websites like this a place where they could find many intetesting things .

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I sympathise with you’re situation.... I have had two biopsies , mri, ultrasound and ct scan.... all came back clear ..... but I have jaundice, nausea, loss of appetite and weight, elevated liver tests, liver palms, liver spots, brown urine and still they send me hope with nothing but antidepressants as I continue to suffer..... i am terribly sorry to hear that they fail to diagnose you’re condition when it is quite clear as to what is occurring.....my only suggestion is to continually present to emergency department until they take the right course of action....they have an obligation to treat people with respect and decency

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Thank you, Ted. So we are in a similar situatuons. It is awfull. How many people are misdiagnosed. Scientists should do something. Because liver enzymes test are often insufficient as well as MRI and CT. But how they ignore the evidential symtoms??.. I wish you to find a qualified doctors who won't prescribe you antidepressants but figure out the true reason of your condition. When I was in hospitals , and in fact experienced hepatic encephalopathy, they told me to go to psychotherapists. It was very emotionally painful.

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So Sorry this is happening to you. Seems like there is no sure fire way to diagnose liver disease properly,until it’s too late. I see so many stories on this sight of people having normal LFT’s Normal ultrasounds, CT normal, and then they have plenty of symptoms that would say the liver is compromised. Good grief. I get more confused everyday. I hope you find a solution and some relief.🙏🙏🙏

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Yes there are many cases of missed liver diseases. There is liver disease called NASH ( non alcohilic steatohepatitys). I have red that with this condition liver enzymes often stay normal and the only sure fire way to diagnose it is biopsy. NASH in some patients progresses to cirrhosis very fast.

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Do you mind me asking if you have seen a gynaecologist? You have a lot of symptoms that would suggest you have a need to. I have personal experience of just how our hormones can cause havoc. I had a full hysterectomy at 39 and it was the best decision I have made medically. You are overwhelmed at present, no wonder you feel so down. my daughter inherited all the same problems and she too has just had a hysterectomy. Have you definitely been diagnosed with cancer? This is a very complex area of medicine, my last partner was diagnosed with a rare throat cancer. He had difficult understanding all the facts and figure of what different stages there are, treatments available and of course the shock. He would not accept as well that he was alcohol dependent. He only drank beers and cider so considered he had no problem. He was extremely fortunate in that the specialist he was under performed a somewhat miraculous surgery. We only discover 2 years later that the type he had was a killer. No chemo,drugs or treatment available. The cancer was lasered. Leaving a tiny trace would have killed him. He had to be detoxed for a week before surgery. Not all cancer is incurable, so you need to insist on getting an honest prognosis. Do you drink alcohol? You need to also address this if you do. No wonder you feel so down, you have a multitude of concerns. A big problem needs breaking down into separate issues. if it was me the cancer would be no 1 priority. If you have secondaries in other places you need to be advised. It must be horrendous for you, by getting answers it may help you. I sincerely hope you can do this. Time to to ask for support. A family member or a good friend. My partner was intelligent and articulate but just the word Cancer evolves fear in most people. He changed due to alcohol, I stuck by him through his cancer, I bailed as he became nasty after drinking. Please don't talk of dying now. You need to use your anxieties to push for answers. Hazelx

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How Radnor. Thanks for your answer. My last visit to , gynaecologist was in august 2018. Everything was ok. By the time I visited a doctor I had already been very sick, 5,5 months of illness, 2 hospitals, brain intoxication, intracranial pressure, hepatic encephalopathy. And since september I started having pain in my pelvic, and it was ckear that liver is involved as it is metsbolises the estrogen. I made blood test and saw the high level of this hormone. When liver is insufficient to eliminate the estrogen it is converted to metsbolites that are extremely cancerogenic. Recently I made abdominal CT,my uterus is extremely enlarged. I recently started having pain in my breast. There organs have receptors to estrogen. I know there are hormone dependent cancer but people developed it for many years. In my case I have got that kind of damage that impared this function in a very agressive way. Damaged liver affected not only my hormones but cardio vascular system . From time to time I have dyspnea. It resulted in fluid in pericard.

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It is great that you last partner cured his throat cancer. He is lucky.

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Hi,

The main advice I can give you hear is to try not to project too much atm even though it's hard not to and isn't what you want to hear.

Like blackpearl, I have cirrhosis and I am waiting to find out if I have liver cancer due to a small shadow being found on my liver.

At first I was planning my own funeral, goodbye speeches the bloody lot.

I'm still very nervous about what it could be but have spoken to my specialist and transplants are available if needed.

The one thing I would say though is to make sure you don't drink (not saying you are) as you definitely wouldn't get one then.

In the meantime try and just take each day as it comes and your anxieties should ease up.

All the best.

K

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Hello. It is good that you are monitored by doctors. I hope this shadow wil turn out to be no cancer. And even if it is cancer, you have all the chances to get liver transplant . No, I do not drink. I used to drink socially, but 8 months ago when I started feeling sick I stopped drinking any alcohol.

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Thanks.

Great news that you don't drink.

I hope everything works out for you.

Stay positive.

All the best.

K

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In the UK if cance is suspected you are fast tracked. Obviously you have no need to stop drinking, which is a mammoth task for so many people. I too was only a social drinker. Epstein Barr Virus turned me off it totally. I felt nauseous just from the smell. If I were you I would push to see a gynaecologist. My daughter had c125 in her blood. We were all terrified she had cancer. She was warned she may have ovarian cancer. It was a false positive and she had a massive dermoid cyst. She begged for a hysterectomy but was refused, even though it would have been cost free as she was in surgery any way. She still had pain and in August she paid privately too have one, also to discover why she still had pain. She had been fobbed off as having IBS by the surgeon who removed the 11lb cyst! She was told the pain was too high up to be gynae. In August the day after her op the surgeon went to see her. He wanted to show her pictures of what he found. Her ovary was attached to her bowel. It pointed up not down! She was aware adhesion's could form, however a simple scan would have shown this and could have been sorted with keyhole surgery. They also fitted a mirena coil in theatre after removing the cyst. 80% of women benefit. but 20% cannot . She was full of morphine when she was admitted as an emergency, but her husband also supported her. She did not want the damn coil!Again hormones related. apologies gentlemen, but this is relevant because Svetla is suffering not just from liver problems. Hopefully you will get some answers and reduce your overall worries x

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You must have replied as I was typing. Pelvic pain and an enlarged uterus is not normal. Your ovaries are producing these hormones, Please go back . Stick to just the one area, 3 months has past and your symptoms need checking again.

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Yes ovaries are producing these hormones. But problems are not with ovaries itself but with liver, because it had been damaged and it causes build up of estrogen, healthy liver eliminate estrogen . Mine stopped doing it. The only decision that come to mind is to turn off the ovaries so they couldn,t produce estrogen. But liver would continue loosing its function. I think I am developing post necrotic cirrhosis.

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If you are suffering because of the hormones from your ovaries, and a swollen uterus, its on thing less to cope with. You have realised this just by chatting. Every little helps, although it isnt a little op. The less things you have wrong is a reduction in pain and worry. of course you are scared, just the word shadow would fill anyone with dread. One of my closest friends had a 'something' on her bladder, she was told it was cancer too. 3 ops later, scaring her family to hell oops. The good oops. Oh you dont have cancer! She had lost her business and almost her sanity. She sued and of course she won. A variety of scars but no cancer.

You are eliminating some thing, you have not been diagnosed as having cancer hon. it is a wide awake nightmare for you but as K says, its a normal reaction but he has realised getting on with his life right now is his goal. Every ones journey on here is unique. On Wed I discovered I have now progressed to cirrhosis. If I cut out carbs the Prof I saw I can expect to be around in 20 years.In some ways some of us are fortunate. The majority of people turn yellow and develop some nasty symptoms before they are even aware they have liver disease. Keep on keeping on, we are all here to support each other. Get a friend to attend appointments with you, my ex found it invalueable because knowing what he had affected his ability to take evexrything in.

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Oh my gosh, what you are going through if absolutely dreadful. I have to say I have not the insight to offer any practical advice. Have you anyone helping you? I don't know if you are in the uk but is there anyone to speak to personally. It's so important to be heard. I really hope you find some comfort. I'm new here but I see that we all are striving for that. My thoughts are with you. Best wishes.

Coralsun

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Thank you for being so sympathetic. I live in Russia . Yes I have a few people whom I can speak to. My mom supports me. She was with me all the time. She whitnessed how it all progressed in dynamics.

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Hi svetla-na

We have sent you a personal message,

Best wishes

Trust1

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