Advice please - bewildered

Hello everybody. I am a bit confused and would appreciate any advice.I have had right upper quadrant pain for several months.A GP referred me for ultrasound.Sonographer said verbally: "No gallstones". I phoned a week later for blood results, another GP phoned back, said bloods were fine and "liver cyst" (news to me) was not a cause of RUQ pain. Given an apt for a week later after I insisted pain still there. Saw another GP who said nothing about the scan, examined me briefly and said he would refer me to "a clinic". Afterwards I asked receptionist for blood results (needed them for Dermatology where they removed some basal cell carcinomas on Sat for biopsies).She also gave me copy of ultrasound. Was surprised to see "Fatty liver with 22mm lesion in the left lobe liver. Requires further investigation". I am not feeling great. Tired. Sleeping most of the time. Still have RUQ pain. Ankles puffy with a strange black bruise. Now stitches from skin cancer badly infected (Given antibiotic script over phone and due out on Wed). Have newly diagnosed Diabetes 2, three months ago. Have previously had no health problems. Non smoker, non drinker. Am British but lived in South Africa till 3 yrs ago. Very confused by NHS system. Seen a different GP each time. Incredibly brief consultation. Only one examination (prodded stomach). Don't feel GPs are concerned, so should I just leave it? Is this a normal GP practice (seems a little uncoordinated, very little communication, very different to S.A.) ? I am not severely ill and know there is a winter crisis, with very sick patients. Should I wait or ask for further investigation? Thank you.

15 Replies

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  • God, saying this-which I hate to,welcome to the NHS. And I totally get your confusion/bewilderment and disappointment. And welcome to your 4.5 minute 'consultation'with a harassed G.P..Where you're at ,sounds like it should be followed up/scanned pretty sharpish by someone who can.Good luck-Do chase this up-soonest actually diagnose/treat you appropriately. Worse still,and I hate saying this even more, if you can pay privately,all delays will be immediately 'solved'.Do follow these issues up.On a philosophical note,I named my first born child Aneurin,as A beautiful Welsh princes name,and more pertinently as a tribute to Aneurin Bevin,the founding father of the NHS. Good luck-chase it up tho.

  • Jill-- you're in the right place for support and good advice.

    You need to be your own advocate and speak up!!

    Ask, ask, ask, until you're satisfied.

    "What does this result mean?"

    "What is your treatment plan for me?"

    Keep your own records & don't be afraid to Be a pain in the butt!

    I'm in NZ so cannot comment on NHS but what I've gleaned from reading the posts here.. Overall the level of care is quite good.

    A leison of 22mm is not nothing!! NAFLD is a serious condition and can lead to cirrhosis and liver failure.

    Please speak up.. It is your right as a patient, and if you can take support with you to your appointments.

    Good luck Jill,

    Stephanie

  • well said and well read!

    You ARE your best advocate.. and you should demand answers.

  • morning

    Diabetes and a fatty Liver go hand in hand, yes this could well be the source of you feeling like crap and tired all the time. The tests you need are Liver Function tests to check if you are getting an inflamed Liver too. Most of the time a fatty liver isnt too much of a problem, but it does need to be monitored and some life style changes applied where hopefully the fat will start to disperse and be under control.

    There are an unlucky few who progress no matter what they do, so you will need further investigation for sure. For fat to even show on ultrasound it has to be pretty well established.

  • Hi Jill welcome. OK upper quadrant pain can be caused by fatty liver and commonly doesn't show on blood test. Also common for GPS to be complacent about fattly liver. Lesions on the liver are not normal though so should be investigated as should swelling on the ankle. Don't panic but get it followed up

  • Sounds like you are "severely ill" to me.

    Keep on harassing the GPs, get a referral to the local hospital consultants. ...that's prob. what the doc meant by "clinic" but chase it up.

    Ask the receptionist if a letter has gone out.

    It is your right to demand a referral, particularly in the light of the sonography report.

    22mm lesion "requires further investigation" means what it says!

    That's not to be taken lightly...and don't let your down and weary feeling make you avoid the hassle.

    Do NOT "just leave it".

    You don't have to see a random GP each time, you can ask to be seen by a named GP of your choice, if you have any preference....get to see each of the GPs in the practise, you may hit it off with one of them.

    If you can't find a "sympatico" GP in that practise, go to another practise which covers your area...

    In my long term quest for diagnosis over about 15 years, I went through 4 inner city group practises, Lord knows how many GPs and hospital consultants.

    Thanks to their neglect, indifference or whatever I eventually wind up with diagnosis of ME/CFS, Chronic Hep C, and now on the fast track for an Hepatic resection to get rid of a single HCC tumour. Only by being pushy, and there were consequences to that.

    At least I wound up in the hands of the best at KCH.

  • I agree with the others - above - that the pain, fatty liver, lesion and swollen ankles should not be being dismissed. You need to go back to 'a' GP and ensure appropriate follow-up. Make an appt (see advice below) but at that time, ask for copies of all your tests and any letters etc, and read them through, then phone the BLT (link at the top of this page) and talk to their advisors once you have all the details to hand. They can advise you best on what to ask for from the GPs. I'd also get a friend or family member to go with you, and have them up-to-date on your test results, etc.

    Your GP clinic - eg: their online site, notices on walls at clinic, or if you check with the receptionists - should tell you how long appts are. At mine they are officially 10 mins (and frequently run over when a serious condition crops up), but we are clearly told, in their info, that we can ask to book a double slot if it's complex, or we have several conditions to talk about - obviously it might take longer to get such a slot. Also, check (it should say online, and you can check with receptionist which GPs you have seen so far) 'who' all the GPS are, and ask to go to the one you like the most (or dislike the least), but also, try asking around among neighbours etc. to see who others rate - tho' again those GPs will almost certainly have longer waiting list to get a longer appt. (or may not be taking any more patients). When you joined the practice you should have been given a named GP, and you have a right to see them (if you want to - if it turns out to be a good one), so ask who it is.

    Also ... it is your 'right' under the NHS, to have copies of all blood test results, scan details, letters etc. If you ask every time - straight away once the results are back - the GP could print them for you there and then (mine will), or you can ask the receptionists to do it for you. There may be a small charge for copying - mine don't bother if I'm asking immediately - but I've paid £10.00 for a massive wodge of tests when I asked a while after a long illness. Your practice sounds busier and less friendly than mine, but it is your 'right' - however, I'd try calling when they are less busy, asking - or maybe leaving a written request - then if they don't/can't do it straight away, call back and collect, again when they're less busy, if possible. I know it's not easy, but try to get on the right side of the receptionists: it is a stressful, thankless job, and they will probably respond to friendliness and calmness. I used to think mine were ogres, now we chat and joke - but I can see the shutters come down when they are really pressured.

    I hope you get some satisfaction on this; it is not acceptable so far. The NHS is a wonderful institution - most people in the country would not be able to afford the treatment they have, if it were all private - but in some areas they are over-stretched and under-resourced. You may have to consider changing practice, or you could consider private ... tho' in my brief experiences, I have paid huge amounts for treatments I didn't need, or could have had done on the NHS, not to mention £100s + for each consultation.

  • Yes, i'd agree with 'chasing it up'; in many GP's you can request to see the doctor of your own choosing; even if that Doctor is not your official Doctor; i do it all the time. Hopefully you may then be able to discover who is the best doctor at the practice and stick with them. Unfortunately as you have probably discovered you can often wait 3-4 weeks to even see a GP. However, you can get emergency same day appointments; just tell the receptionist its an emergency (you dont have to tell them whats wrong with you even if they ask). Doctors also have the power to refer you urgently for tests etc/ specialists (so tell them to do it) you'd be seen in 2 weeks that way. Be firm and you shouldn't be messed about.

  • Jill-45, this is no good being left bewildered and without answers. You need to revisit your GP and ensure that the following is happening.

    1. Referral to hepatologist (or gastroenterologist at least) has been done. Fatty liver is not to be ignored, it can be reversed if appropriate diet and lifestyle changes are made OR if it has already progressed further then you need to be monitored for the effects of a possibly damaged liver.

    2. A referral for an MRI Scan or CT Scan has been done to investigate further this 22mm lesion - this should not be ignored and needs the investigation which sonographer reported. Lesions in the liver can be the obvious nasty but can also be benign such as cysts or hemangioma's but whatever it is it needs to be clarified 100% so you can either receive appropriate treatment or put your mind at rest.

    If you arn't getting the answers you require then put your request in WRITING - include your CHI number and then it is harder for it to be swept under the carpet as a verbal conversation might plus the letter ends up in your file.

    I did this when local hospital consultant had talked of it being time to refer hubby to transplant clinic and after 6 months we'd heard nothing - I wrote and it turned out the referral had never been done because consultant had gone off work sick himself & his paperwork hadn't been done so we'd been sat waiting for an appointment which was never coming. Once the letter hit the hospital we saw a locum within days and were at the transplant unit within 2 weeks.

    It's awful that you do have to do all the running, (I still feel like it is me co-ordinating hubbies care because we see so many different hospital doctors) but you do have to push (calmly and assertively) for what you need.

    Do not be fobbed off, this NEEDS further investigation NOW.

    All the very best to you.

    Katie x

  • Thank you SO much to everyone for your valuable advice. It is really great not to feel alone. I appreciate you all taking the time to reply, so quickly and on a Sunday. This was the first time in my life I had ever written on a forum, and I am overwhelmed by the help and response. I will definitely follow this up tomorrow, when the practice is open, and I am writing every one of your answers down so that I am well prepared. I will post on here what happens. Thank you again.

  • Good luck, and thanks for the 'thanks'.

    Gxx

  • A better way of writing it all down:

    Right click mouse in the page \ choose "select all" blue bits appear.

    Press Ctrl + C (copy to clipboard)

    Open "Notepad"

    Press Ctrl + V ( Paste to notepad)

    You will then have the full text of the messages with a few other bits and pieces which can be edited out and condensed.... then

    Repeat in Notepad from "Edit" menu

    Select all \ Ctrl + C

    and then open your WP, MS Word or whatever.

    Ctrl + V again

    Now you have all your text and can easily format it to your liking and print out.

    Easy-peasy!

  • Thanks so much for that help! I planned to start writing all night!

  • I'm not sure..my GP surgery is GREAT! They all take their time..I found my right doctor fit there, and thats who I see..He even has come to the house to see me..on a same day appointment..

    Maybe its just the surgery?

    But I do know this..if your not happy..go to a different surgery..explain your issues.

    Just because someone has the letters MD behind their name..this means NOTHING!

    Especially since, being an American, I have found the NHS doctors to be wonderful! all of them!

    Maybe I just got lucky?

    I do live out in a little village in Essex, down in the country area, near Colechester..so maybe its location?

    cheering you on, and hoping things get better for you, soon.

    kimberly

  • Thank you Kimberly. My GP surgery says they have over 14 000 patients, and 3 GPs. They have also recently taken over management of a nearby practice that only had one GP for over 6 000 patients and was going to have to close. I picked this up from a Friends of the practice newsletter on the receptionists desk. So I guess they are over-stressed! Thanks for the good wishes. Hopefully I get some success in referral today.

    Jill

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