I have been under the doctor for a year with severe pain in right leg .I have had numerous tests eg MRI,gamma xray ect ect .and blood tests.nothing found.I changed doctor after moving house and had to have a not.blood test was abnormal. I was sent for ultra sound were they found enlarged liver and spleen.aparantly whole liver covered in have to wait up to 18 weeks to see liver specialist.I am now getting severe pain under my ribs and upper back.any help on pain advise would be appreciated .

42 Replies

  • im struggling to see how the previous tests didnt pick anything up! the enlarged spleen and nodules indicates advanced liver disease/cirrhosis. sorry if this has alarmed you, are you a drinker?

  • No not really .had pancreatitis two years ago and had my gallbladder removed.drank onsat nights for two, years .before that.

  • Try and push your appointment, dont just go with the flow. There must a reason for the nodules, has the GP made any suggestions? Its odd nothing has been picked up and then suddenly your into nodules etc. . Do you take any medications? do you have any other symptoms?

  • I just have a inhaler as was diagnosed with c o p d by previous doc says after another chest xray my lungs are clear .I have dreadful pain under ribs took paracetamol yesterday!!!! Bad idea.there is an 18 week wait to see specialist.

  • go back to your doctor about the pain, paracetamol is not good for the liver, see your doctor before you take anything. Do you have portal hypertension? Your enlarged spleen suggests you may have, you may need beta blockers to bring your blood pressure down and you may need checking for varices.

    Seriously, although you have been passed to a specialist I think you need to go back to your doctor and get him to explain alot more, what you have described is very serious and can carry serious complications that can happen at any time if left unchecked , being left for 18 weeks without a hint of what is wrong is just not good enough!

    Get copies of all scans and blood tests you have had and start to get familiar with what they mean , from my own experiences with GPs you will have to take control, its your health/life at stake, please dont sit on this.

  • I will thank you. I didn't think it was that serious .because of the wait to see the specialist.

  • Im affraid the waiting is a problem in the NHS. To be honest I think your GP needs a kick up the whats it. Im sure he/she could push this and get you seen sooner, its sound to me like they dont really know much?

    Im not trying to alarm you, but what you have described is usually cancer or advanced cirrhosis. Are you sure it said nodules? because you dont seem have too many bad signs of liver failure right now. How are your stools and urine etc. do you have energy problems?

  • My doc is Chinese and said she would chase them up .stools fine.urine fine .

  • has she explained the situation to you? did you get copies of your bloods and scans?

  • No.going to see her monday

  • Get very tired no energy .

  • She just said nodules on whole of liver.and swollen and inflamed spleen.

  • im still baffled about your previous scans, where they of the knee you are having trouble with?

  • Had full body MRI.gama xray full body.chest xray xtwo .three blood tests this year.

  • Two weeks ago had ultra sound scan the doctor doing it said I had enlarged liver and own doctor phoned me two days later to go see her .that's when she said I had nodules.

  • thats what doesnt make sense. and MRI should pick up liver damage better than an ultra sound. I cant see how you can go to end stage liver disease in a year? Thats what you are describing with the nodules, and there is no obvious cause with you not being a drinker. There such things as PBC and auto immune cirrhosis that can cause damage also hepatitis a,b and c, also when they took your gall bladder out they would have had a visual of your liver and would have noted any scarring on the post operation report. it could be that she is mistaking something written on the ultra sound report? maybe it says "coarse texture" which would be cause for some concern but not as much as completely nodular.

  • Well I will be better armed when I see her thank you so much.

  • another strange thing is the enlarged liver, usually as it becomes nodular it shrinks and becomes hard. did she physically examine you? she should have been able to feel it hard and lumpy.

    To be honest im pretty worried about what you have said, i would be tempted to go to ER and get them to check for varices, you dont want one to rupture.

  • If the pain gets much worse I will.

  • carolle, if you feel bad and in pain then dont hesitate to go, thats what they are there for. I hope you get some answers on monday, keep us posted, god bless.

  • Have now got appointment to see specialist on 27 th so hopefully get some answers.

  • Well done Carolle! Just goes to show you need to be pro-active here. Did you get copies of your tests and scans? Although your seeing the specialist soon I was hoping the doctor could have been more forth coming and perhaps even advised on diet. No salt! fresh fruit and veg, NO ALCOHOL and no smoking.

  • Funny thing happened yesterday.I was in a lot of pain ,fever and being sick,my husband called doctor,as it was after hours a locum came out.she had printed off my notes .fortunately she left her notes I have some results ,it actually said .the liver is enlarged with course bright echotexture.suggesting cirrhosis .and spleen enlarged it measures 13'5cm.was told the paracetamol I had taken earlier was the cause of my pain .

  • i think it depends on the person with paracetamol, did she give you anything else? That is bad news carolle, im sorry, something has damaged your liver badly, thats why they are sending you to a specialist, im guessing to try determine the cause. If the cause can be stopped then further damage can be stopped, drinkers stop drinking, Hepatitis patients try to cure the Hepatitis etc. You have no idea what has caused this? It would have taken many years to get to this stage. I think you definitely need checking for Varices and maybe some beta blockers to get your blood pressure down. Your condition is very serious, were there any bloods test results, ALT, AST, GGT Billirubin etc?

  • Got all them results on the notes but I don't understand them of blood pressure is normal.but I'm sat here with a hot water bottle trying to ease the pain.

  • I hope your pain eases. Well the blood test results do look confusing at first, but google is your friend, every count has limits to where they should be. The print out I got from the doctors has all the limits on it, things like Billirubin is listed on mine as "serum billirubin" Now is the time for you to get familiar with some of these numbers, you have a journey into the the importance of these just ahead of you.

  • Main problem that I can see is plasma alt level 60 u/l.

  • ALT measures inflammation , some labs differ a bit but the one I had the top end was 45, 60 isnt really high, but your liver maybe too damaged to produce the enzymes. A fatty liver can have scores in the hundreds, cirrhosis should be a score. But i suppose this shouldnt matter too much since you know its swollen anyway. Billirubin and Platelets are important to you at the moment

  • Mch 25.5 pg mchc 318g/l.bilirubin 8umol/L.

  • the bilirubin is fine, top end is about 20, so your right in the middle. when it gets too high people start to turn yellow. the other is hemoglobin, im not too sure on that.

  • Thank you so much for all your help and advise .very much appreciated. Puts my mind at rest a bit,hopefully I will live to enjoy my second marriage after nursing my first husband with cancer of the liver.only got married in June so fingers crossed.

  • god bless you, sorry to hear of your 1st husband. Atleast your liver does seem stable right now. Hope you can get some answers and a way forward from your appointment.

  • With regards to pain killers Carolle, paracetemol is actually the safest painkiller to take even with advanced liver disease providing it is taken within the recommended dosages. My hubby has advanced cirrhosis of the liver (auto-immune caused and now on transplant list) and his consultants (including the transplant unit) have always recommended it (and prescribed it) for his pain after procedures - he has also received morphine following surgery and been prescribed tramadol for post op pain relief. Do not take aspirins or Ibuprofen type painkillers - these are the big no, nos.

    I would also urge you to chase up the specialist appointment as a wait of 18 weeks seems incredibly long when you're left dangling with such seemingly serious symptoms.

    All the best to you. Katie :)

  • Ty Kate.

  • Hi I had my gallbladder out when I was 18 and had pancreatitus at the same time. 30 years later had a flare up of the pancreatitus ans was in hospital for 3months. I was diagnosed with cirrhosis of the liver 5 years ago I don't drink, so I have NASH and I am waiting to go on the transplant list. So I know how you are feeling. As regards to pain if I get a bad bout of pain I take paracetamol and try to sleep propped up.

    Kind regards Wackie Jacqui

  • Thank you.

  • Have appointment for 27th so hopefully get some answers.

  • how did it go for you?

  • Not as bad as I was led to believe by my doctor. Still undergoing more tests but not cirrhosis thank god

  • How have they confirmed no cirrhosis? Glad it isnt too bad , really odd situation with good recent scans, did they suggest anything?

  • I had a fibrescan it was 4: seems to think its my pancreas I am waiting for an MRI and blood results

  • thats excellent! totally normal, congratulations!

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