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On-going and undiagnosed health issue.

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    Note: This has ended up being quite an essay so for that I apologise.

    Now I know what the general opinion is on searching the internet for answers are and so on, but I'm really just looking for a little advice on this; I know there will be some of you on here who will have a better understanding than I do myself.

    Okay, so...

    ...maybe about, what, two years ago, I noticed that the upper right quadrant of my stomach - just below my right ribs - was 'bigger' than the rest of my stomach. I'm not slim, you know, I have a bit of chub going on, but still, it's noticeable... not only to myself and from my view. I went to see my GP about this, coupled with a few other symptoms; struggling with weightloss despite training at the gym and pool, watching what I ate, etc. and also severe acne. I was sent for an ultrasound on my lower stomach - I'm assuming because of the symptoms I was experiencing - and the results were that I have polycystic ovaries. Of course that wasn't ideal news but it was the best from a bad bunch and "it could've been worse" I thought. I started the pill and started to see the change in more ways than one.

    However, the 'swelling' that I had gone to the GP with primarily was still there and on the run-up to Christmas last year it started to cause problems pain-wise. I went back to see my GP. I had bloods taken and was referred for another ultrasound; the Liver Function bloodtest came back with abnormalities and the ultrasound showed the same - the latter was sent to a specialist who requested another but with the introduction of dye... however, this came back normal. After that, it was pretty much left, despite having a few episodes of bad pain/discomfort and noticing a few new symptoms.

    In early July of this year I left work during a shift feeling rank after having been sick and, knowing that the pain I was feeling was 'different' than usual, I took myself to A&E. I was given an xray which came back as clear, put on fluids and given morphine for the pain (and that continued over the four days I was kept in) aswell as being sent for an endoscopy, which also came back clear. The Doctor I saw said that I was a "mystery" but that he was determined to find out what the problem was as I obviously wasn't well (cold-sweats, no appetite, vomiting, pain, diarrhoea). When I returned home I kept up with the painkillers, really in hope, as they hadn't touched me at all in hospital hence the morphine I was being given. Two weeks later and I was back in with the same symptoms, only more so. During that stay I had another LFT which came back as normal (although the day beforehand, I had been given results from the same type of test taken the week prior and they were abnormal) and an MRI scan which came back as clear... though the Doctor (a different one - someone with who I felt completely unsatisfied with) wanted me to have an MRCP - an MRI which concentrates on the liver and is taken with the introduction of dye into the bloodstream. I was again sent home with an out-patients appointment for the following week for the aforementioned scan... but two days home and I had a phone call from the hospital to let me know that the scan had been cancelled... and since then, I feel as if I have been completely ignored.

    Because of the way I have been feeling - worse, if anything - and my time off work (I haven't been in since my first hospital admittance) it has been suggested to me that I re-admit myself, but due to a few things floating about in my head (my girlfriend being a worrier, my Mum having to travel and pay for parking, etc.) and also the fact that I had a run-in with a Nurse during my second visit as she was convinced I was only there for the morphine (of which I had none of the second time around because of that fact) I'm really not sure I want to... and I hate to feel like I am wasting time, you know?

    And then yesterday... the Doctors' Surgery called saying that the hospital had requested that I was to have a set of LFTs done. This is the first I have heard from them and trying to book an appointment to see my GP is seriously one of the most difficult challenges I have ever been set; however, both are happening this week.

    So, my symptoms: a one-off mega weightless (around a stone and eight pounds in four days), lack of appetite, pain in upper right quadrant of stomach, crazy tiredness, almost constant sick feeling with actual periods of vomiting (which once or twice included small amounts of blood), diarrhoea, dark urine, mood swings, a tonne of sweating, disrupted sleep almost every night... that's all I can think of at the moment...

    Can anyone give any sort of advice, on anything? I'm not sure if I should be looking out for anything in particular or if there's anything specifically that I can mention to my GP, but, I really am getting to the end of my tether. I want to go back to work and I reeeeally need to get back into training as I am applying for a job in the Emergency Services towards the end of the year. I just feel like my life is on hold at the moment. So, anything would be very appreciated.
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    (Original post by Anonymous)
    Note: This has ended up being quite an essay so for that I apologise.

    Now I know what the general opinion is on searching the internet for answers are and so on, but I'm really just looking for a little advice on this; I know there will be some of you on here who will have a better understanding than I do myself.

    Okay, so...

    ...maybe about, what, two years ago, I noticed that the upper right quadrant of my stomach - just below my right ribs - was 'bigger' than the rest of my stomach. I'm not slim, you know, I have a bit of chub going on, but still, it's noticeable... not only to myself and from my view. I went to see my GP about this, coupled with a few other symptoms; struggling with weightloss despite training at the gym and pool, watching what I ate, etc. and also severe acne. I was sent for an ultrasound on my lower stomach - I'm assuming because of the symptoms I was experiencing - and the results were that I have polycystic ovaries. Of course that wasn't ideal news but it was the best from a bad bunch and "it could've been worse" I thought. I started the pill and started to see the change in more ways than one.

    However, the 'swelling' that I had gone to the GP with primarily was still there and on the run-up to Christmas last year it started to cause problems pain-wise. I went back to see my GP. I had bloods taken and was referred for another ultrasound; the Liver Function bloodtest came back with abnormalities and the ultrasound showed the same - the latter was sent to a specialist who requested another but with the introduction of dye... however, this came back normal. After that, it was pretty much left, despite having a few episodes of bad pain/discomfort and noticing a few new symptoms.

    In early July of this year I left work during a shift feeling rank after having been sick and, knowing that the pain I was feeling was 'different' than usual, I took myself to A&E. I was given an xray which came back as clear, put on fluids and given morphine for the pain (and that continued over the four days I was kept in) aswell as being sent for an endoscopy, which also came back clear. The Doctor I saw said that I was a "mystery" but that he was determined to find out what the problem was as I obviously wasn't well (cold-sweats, no appetite, vomiting, pain, diarrhoea). When I returned home I kept up with the painkillers, really in hope, as they hadn't touched me at all in hospital hence the morphine I was being given. Two weeks later and I was back in with the same symptoms, only more so. During that stay I had another LFT which came back as normal (although the day beforehand, I had been given results from the same type of test taken the week prior and they were abnormal) and an MRI scan which came back as clear... though the Doctor (a different one - someone with who I felt completely unsatisfied with) wanted me to have an MRCP - an MRI which concentrates on the liver and is taken with the introduction of dye into the bloodstream. I was again sent home with an out-patients appointment for the following week for the aforementioned scan... but two days home and I had a phone call from the hospital to let me know that the scan had been cancelled... and since then, I feel as if I have been completely ignored.

    Because of the way I have been feeling - worse, if anything - and my time off work (I haven't been in since my first hospital admittance) it has been suggested to me that I re-admit myself, but due to a few things floating about in my head (my girlfriend being a worrier, my Mum having to travel and pay for parking, etc.) and also the fact that I had a run-in with a Nurse during my second visit as she was convinced I was only there for the morphine (of which I had none of the second time around because of that fact) I'm really not sure I want to... and I hate to feel like I am wasting time, you know?

    And then yesterday... the Doctors' Surgery called saying that the hospital had requested that I was to have a set of LFTs done. This is the first I have heard from them and trying to book an appointment to see my GP is seriously one of the most difficult challenges I have ever been set; however, both are happening this week.

    So, my symptoms: a one-off mega weightless (around a stone and eight pounds in four days), lack of appetite, pain in upper right quadrant of stomach, crazy tiredness, almost constant sick feeling with actual periods of vomiting (which once or twice included small amounts of blood), diarrhoea, dark urine, mood swings, a tonne of sweating, disrupted sleep almost every night... that's all I can think of at the moment...

    Can anyone give any sort of advice, on anything? I'm not sure if I should be looking out for anything in particular or if there's anything specifically that I can mention to my GP, but, I really am getting to the end of my tether. I want to go back to work and I reeeeally need to get back into training as I am applying for a job in the Emergency Services towards the end of the year. I just feel like my life is on hold at the moment. So, anything would be very appreciated.
    I've read what you've written. I'm no doctor but I think the only choice you have is to readmit yourself...you could see your GP again but that doesn't seem to be working as all they are doing is giving you a scan and then the scan is coming back clear...also this is quite time consuming and you want to get back to work asap. I think you'll just have to readmit yourself and be really passionate about the situation when you're explaining it ..tell them all you've been through..maybe write it down with time periods etc so you can give them a really detailed account...don't just sit there and be like ..'well this happened..and that happpened..but it's not soo bad now' You really need to get it across to them that this has been going on for a long time and you really don't now what to do anymore ...you feel physically drained...also your symptoms seem quite serious such as diarrhoea etc ..I wonder if its something do to with your ovaries again or a different problem..but yeah definately do not just leave it try and do something !
    • Thread Starter
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    (Original post by CasualSoul)
    I've read what you've written. I'm no doctor but I think the only choice you have is to readmit yourself...you could see your GP again but that doesn't seem to be working as all they are doing is giving you a scan and then the scan is coming back clear...also this is quite time consuming and you want to get back to work asap. I think you'll just have to readmit yourself and be really passionate about the situation when you're explaining it ..tell them all you've been through..maybe write it down with time periods etc so you can give them a really detailed account...don't just sit there and be like ..'well this happened..and that happpened..but it's not soo bad now' You really need to get it across to them that this has been going on for a long time and you really don't now what to do anymore ...you feel physically drained...also your symptoms seem quite serious such as diarrhoea etc ..I wonder if its something do to with your ovaries again or a different problem..but yeah definately do not just leave it try and do something !
    Thankyou so much for your advice.

    I have often thought about just going back in but again I over-think the whole 'girlfriend visiting/stressing out' and 'Mum visiting/paying for parking' situation; I feel especially bad for those things considering it's happened twice and I've come away with no answers both times, you know? I do think it's something I need to discuss with them however and seriously think about...
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    I had similar problems a few years ago when I was very ill and had a liver infection. I now get liver/gall bladder pain on and off when I eat the wrong foods. They are: excess sugary foods or drinks and foods with very high fat content. I have also found that I have become slightly intolerant to wheat and dairy so I try not to consume too much of either of those now. Mostly the symptoms are fine now, but I do get the odd pain every now and then, I can usually attribute it to something which I have eaten though. What is your diet like? Is it possible you're eating something which is exacerbating your symptoms? Could you cut out sugary and high fat foods and see if it helps?


    As your LFT's have returned to normal and your scans were fine it is quite possibly not an infection like mine and I'm not doctor and I'm not saying this is your problem, but it sounds terribly similar to what I suffered, and still occasionally suffer, from; and like I said mine is now almost completely related to the food I eat.

    Good luck.
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    (Original post by SuperCat007)
    I had similar problems a few years ago when I was very ill and had a liver infection. I now get liver/gall bladder pain on and off when I eat the wrong foods. They are: excess sugary foods or drinks and foods with very high fat content. I have also found that I have become slightly intolerant to wheat and dairy so I try not to consume too much of either of those now. Mostly the symptoms are fine now, but I do get the odd pain every now and then, I can usually attribute it to something which I have eaten though. What is your diet like? Is it possible you're eating something which is exacerbating your symptoms? Could you cut out sugary and high fat foods and see if it helps?


    As your LFT's have returned to normal and your scans were fine it is quite possibly not an infection like mine and I'm not doctor and I'm not saying this is your problem, but it sounds terribly similar to what I suffered, and still occasionally suffer, from; and like I said mine is now almost completely related to the food I eat.

    Good luck.
    Hi! Thankyou.

    I was asked quite frequently if anything I ate or drank made it worse, but I've never ever been able to pinpoint anything. The pain is almost always there, even as a dull ache, then it flares up.

    I just feel like I am being panned off. I'm not some silly little attention seeker, huh. Hmmm.
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    I know how you feel. But try to cut those things out for a fortnight and see if it helps. Try no wheat, dairy, sugary or high fat foods and see if your symptoms get better.
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    To be honest, I'm not sure how exactly you would "readmit" yourself - if you are not currently acutely unwell, A&E aren't likely to admit you. I would recommend going through all of this with the GP, mentioning the MRCP that was cancelled, the tests which are sometimes abnormal and sometimes not, and the fact you don't feel like you've had any hospital follow up. It sounds like you need to be seen in outpatients quite soon, although the GP may have had letters from the hospital which give them/you more information.
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    Did the hospital explain to you why the MRCP was cancelled? If not, you could try calling your consultant's secretary to find out what's going on & whether it's going to be rescheduled. The hospital may have sent your GP letters which explain what they're planning & why, and if you go & discuss things with the GP they may be able to either explain things a bit better &/or chase the issue up on your behalf.
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    So we've had Ultrasounds.
    We had MRIs.
    We've had an endoscopy.
    We've had lots of bloods tests.

    No answer can yet be found.
    This sometimes happens.

    OP, what do you want from a stay in hospital
    An answer? It appears that ain't going to happen from the evidence. Not unless something has changed
    More painkillers - they can give you that in GP surgery, even morphine if you really need it.
    • Thread Starter
    #1


    I went for my LFT but the phlebotomist couldn't tell me why it had been requested; luckily I had managed to get an appointment with a GP to get a sick line and query a few things - what happened in that appointment almost had me in tears, both from shock and relief.

    Only now has a certain liver screening come back and shown that it is around 99% likely that I have Chronic Autoimmune Hepatitis. I was shown letters sent between Dr's and also my GP and they have, without really saying it, admitting that they did not look hard enough and spent too much time concentrating on the wrong area (they were sure that my gallbladder was the problem, even though scans/xrays/bloodtests said otherwise).

    So now I am awaiting an MRCP (which they had cancelled before) and an appointment with a specialist, while being kept a close eye on.

    Does anyone know of anything really to do with Chronic Autoimmune Hepatitis? Obviously I've looked at a few things online but I don't fully trust the internet - you can never be sure of what you read.

    Thanks.
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    (Original post by SuperCat007)
    Quote.
    (Original post by Helenia)
    Quote.
    (Original post by jimbo139)
    Quote.
    (Original post by Jamie)
    Quote.
    Please see above.
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    (Original post by Anonymous)
    I went for my LFT but the phlebotomist couldn't tell me why it had been requested; luckily I had managed to get an appointment with a GP to get a sick line and query a few things - what happened in that appointment almost had me in tears, both from shock and relief.

    Only now has a certain liver screening come back and shown that it is around 99% likely that I have Chronic Autoimmune Hepatitis. I was shown letters sent between Dr's and also my GP and they have, without really saying it, admitting that they did not look hard enough and spent too much time concentrating on the wrong area (they were sure that my gallbladder was the problem, even though scans/xrays/bloodtests said otherwise).

    So now I am awaiting an MRCP (which they had cancelled before) and an appointment with a specialist, while being kept a close eye on.

    Does anyone know of anything really to do with Chronic Autoimmune Hepatitis? Obviously I've looked at a few things online but I don't fully trust the internet - you can never be sure of what you read.

    Thanks.
    It's not something I know much about to be honest, unfortunately - it's one of those things that's rare enough it's mostly seen in specialist liver units. If you want to look up stuff online, patient.co.uk is a good place to start.
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    (Original post by Anonymous)
    Note: This has ended up being quite an essay so for that I apologise.

    Now I know what the general opinion is on searching the internet for answers are and so on, but I'm really just looking for a little advice on this; I know there will be some of you on here who will have a better understanding than I do myself.

    Okay, so...

    ...maybe about, what, two years ago, I noticed that the upper right quadrant of my stomach - just below my right ribs - was 'bigger' than the rest of my stomach. I'm not slim, you know, I have a bit of chub going on, but still, it's noticeable... not only to myself and from my view. I went to see my GP about this, coupled with a few other symptoms; struggling with weightloss despite training at the gym and pool, watching what I ate, etc. and also severe acne. I was sent for an ultrasound on my lower stomach - I'm assuming because of the symptoms I was experiencing - and the results were that I have polycystic ovaries. Of course that wasn't ideal news but it was the best from a bad bunch and "it could've been worse" I thought. I started the pill and started to see the change in more ways than one.

    However, the 'swelling' that I had gone to the GP with primarily was still there and on the run-up to Christmas last year it started to cause problems pain-wise. I went back to see my GP. I had bloods taken and was referred for another ultrasound; the Liver Function bloodtest came back with abnormalities and the ultrasound showed the same - the latter was sent to a specialist who requested another but with the introduction of dye... however, this came back normal. After that, it was pretty much left, despite having a few episodes of bad pain/discomfort and noticing a few new symptoms.

    In early July of this year I left work during a shift feeling rank after having been sick and, knowing that the pain I was feeling was 'different' than usual, I took myself to A&E. I was given an xray which came back as clear, put on fluids and given morphine for the pain (and that continued over the four days I was kept in) aswell as being sent for an endoscopy, which also came back clear. The Doctor I saw said that I was a "mystery" but that he was determined to find out what the problem was as I obviously wasn't well (cold-sweats, no appetite, vomiting, pain, diarrhoea). When I returned home I kept up with the painkillers, really in hope, as they hadn't touched me at all in hospital hence the morphine I was being given. Two weeks later and I was back in with the same symptoms, only more so. During that stay I had another LFT which came back as normal (although the day beforehand, I had been given results from the same type of test taken the week prior and they were abnormal) and an MRI scan which came back as clear... though the Doctor (a different one - someone with who I felt completely unsatisfied with) wanted me to have an MRCP - an MRI which concentrates on the liver and is taken with the introduction of dye into the bloodstream. I was again sent home with an out-patients appointment for the following week for the aforementioned scan... but two days home and I had a phone call from the hospital to let me know that the scan had been cancelled... and since then, I feel as if I have been completely ignored.

    Because of the way I have been feeling - worse, if anything - and my time off work (I haven't been in since my first hospital admittance) it has been suggested to me that I re-admit myself, but due to a few things floating about in my head (my girlfriend being a worrier, my Mum having to travel and pay for parking, etc.) and also the fact that I had a run-in with a Nurse during my second visit as she was convinced I was only there for the morphine (of which I had none of the second time around because of that fact) I'm really not sure I want to... and I hate to feel like I am wasting time, you know?

    And then yesterday... the Doctors' Surgery called saying that the hospital had requested that I was to have a set of LFTs done. This is the first I have heard from them and trying to book an appointment to see my GP is seriously one of the most difficult challenges I have ever been set; however, both are happening this week.

    So, my symptoms: a one-off mega weightless (around a stone and eight pounds in four days), lack of appetite, pain in upper right quadrant of stomach, crazy tiredness, almost constant sick feeling with actual periods of vomiting (which once or twice included small amounts of blood), diarrhoea, dark urine, mood swings, a tonne of sweating, disrupted sleep almost every night... that's all I can think of at the moment...

    Can anyone give any sort of advice, on anything? I'm not sure if I should be looking out for anything in particular or if there's anything specifically that I can mention to my GP, but, I really am getting to the end of my tether. I want to go back to work and I reeeeally need to get back into training as I am applying for a job in the Emergency Services towards the end of the year. I just feel like my life is on hold at the moment. So, anything would be very appreciated.
    I'd readmit yourself, because of the weight loss, that much weight in four days says to me that they need to sort out what's going on asap before you dissapear! That is significant weight loss!
    \
    P.S GPs can be horrendous in getting things sorted, in future can you see a different one? I certainly would if you could (I have a frozen shoulder (not on the same level as your problem) one GP gave me a printout with exercises (even though I'd explained to her my dad had had a frozen shoulder and I'd already been doing exercises with no improvement), dissatisfied I saw another one who referred me to a physio. I am now getting ultrasound therapy and manipulation as well as possibly a steroid injection - bit of a different reaction!) You don't have to accept the first doctor's method of handling you as a patient!
    • Thread Starter
    #1

    (Original post by Helenia)
    It's not something I know much about to be honest, unfortunately - it's one of those things that's rare enough it's mostly seen in specialist liver units. If you want to look up stuff online, patient.co.uk is a good place to start.
    That is a brilliant website. Thankyou for all your help. I do really appreciate it.

    I wasn't quite aware how "rare" this was... it just seems like something that would be quite common.
    • Thread Starter
    #1

    (Original post by xfirekittyx)
    I'd readmit yourself, because of the weight loss, that much weight in four days says to me that they need to sort out what's going on asap before you dissapear! That is significant weight loss!
    \
    P.S GPs can be horrendous in getting things sorted, in future can you see a different one? I certainly would if you could (I have a frozen shoulder (not on the same level as your problem) one GP gave me a printout with exercises (even though I'd explained to her my dad had had a frozen shoulder and I'd already been doing exercises with no improvement), dissatisfied I saw another one who referred me to a physio. I am now getting ultrasound therapy and manipulation as well as possibly a steroid injection - bit of a different reaction!) You don't have to accept the first doctor's method of handling you as a patient!
    Oh I've been through my share of GPs. It's so very difficult to get an appointment with my actual family GP so of course I had to start seeing someone else, but I'm now having the same problem with him - I'm calling up to see what I can get but they're always booked out for that week and the next. It got to a point where I was seeing whoever I could and just taking my chances. I've been unlucky in some cases, like when I was sent home from the medical centre with silly painkillers and then ended up in hospital that same afternoon (and now I know that those painkillers would have actually done more harm than good). Now however I seem to have found a GP who I'll stick with - it sounds silly but she is just genuinely a lovely person who took the time to sit with me and discuss things and even listen to my stupid rambling on about having been worried that I would be told it was all in my head, etc. etc. She's gone beyond what she had to, ie. printing off letters, wanting to keep a person close-eye on me and so on. I find it quite difficult to trust doctors as it is (due to a past situation involving a family member), so, I feel fairly lucky with this GP.
    • Thread Starter
    #1

    I forgot to mention that I called the specialist's secretary yesterday to find out if an appointment had been made for me - as suggested by the GP - and she was also very lovely (it's horrible when it comes as a shock when people from certain professions are nice and seem to actually care). She told me that an appointment had been made for me, for October, but she wasn't happy with that at all and, since she could see some of my notes, didn't understand why my appointment had been set so late back. In her words, if I had to wait a further two months with no appointment and/or medical help, I could be facing a transplant. She gave me a telephone number for the area in the hospital that organises the appointments but then told me that she would call herself as I shouldn't have to. I did try to call back yesterday around 4:30pm (I had first called just after 9am) but I couldn't get through, so I'm going to try again today to see if there is any news. I really do hope she can help me out... I can't wait that long, not just because of my health, but obviously I'm thinking about the time I have already had and will be needing to have off work and the fact that I plan on applying for the Police during their next intake at the end of the year. Talk about typical timing!

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