Gall Bladder going no where fast

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Hi All, I have had severe sickness, sweating, pains in chest and right arm pit also right hand side lower back which also seems to pulse up into the rib cage.  I have been sick since Oct 2017, by the end of Dec I could eat very little and I lost a stack of weight.  I went onto a very basic diet and much of the symptoms went away.  I have had CT, Endoscopy & Colonoscopy & ultrasound.  The lady that did my ultrasound gave an entirely different diagnosis to what the radiographer has given which is why I am now seeking a HIDA test but it seems like Drs are either ignorant or simply do not wish for me to have the test.  I saw a Dr 2 days ago and was referred back to consultant of which I went to book online and the earliest is 14th Jan 2019!!!

My main symptom is laying down and sweating but this also occurs when eating but not all the time where as laying down does all the time.

When I saw the consultant she blatantly said all the things I described did not point to Gall Bladder yet reading this site it is obviously clearly correct that it is!

I am in despair with this because the NHS has not helped me one bit and it is only by talking with friends who have had this issue that I am not suffering in pain except from sweating and pain in my right hand side.

Can anyone say with their Gall Stones that they suffered with sweating?

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  • Posted

    Hi sweetie I had my gallbladder removed on Monday and I had same symptoms as you pain in chest armpit upper back I also would sweat and get dizzy but they say that’s not a symptom. But I’ve seen from a lot of ppl that it is. 

    I wish you the best of luck hun!

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    • Posted

      I am going out my mind, everyone except Drs say this is Gall Bladder but all the scans say I have sludge in it and even the ultrasound girl said if the stones are small the machine will not pick them up.

      My Drs have given up on me and I have asked for a HIDA test to which now I have been referred back to hospital consult and guess what 14th Jan 2019 is the earliest date, I have been ill since Oct 2017.

      This is simply crazy but I am going to keep trying as I also still have this ache in my right hand side which comes and go.

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  • Posted

    My son has a gall stone at age 13 and when he is having a bad attack of pain he is clamy and sweaty due to the pain hope you get sorted
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    • Posted

      Hi Kerri60208, the main sweating comes when eating or laying down in bed and if I cant sleep it comes about an 1 hours time but if I am lucky I fall asleep and just wake up with a soaking wet towel, so as the pillows do not get ruined, the Dr's answer, "We have done all the relevant test which prove there is nothing majorly wrong with you and thus you must just be a sweaty person!"?  I can't believe in England we have this sort of ignorance going on but here in the south it is near impossible to see a Dr with 2 weeks, I have got to be first in the queue in the morning just to get one in 2 weeks time.  Its madness.

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  • Posted

    I've been going through the same. It's been going on for me now since Oct 2016. I'm like you, i know exactly what it is as i have pretty much every gallbladder symptom going. I've had to make a nuisance of myself but still pretty much have got nowhere.

    I can tell you now that the NHS does not give a toss and it very much seems like a postcode lottery. 

    People come and go from here but i've seen people paying private, failing to be put on waiting lists for surgery, waiting 6 to 12 months for surgery, waiting 6+ months to see consultants etc. It's a joke.

    All that being said i have seen maybe 1 person from the UK in the time i've been here that was sorted and treated within a short period of time.

    You having to wait 7 months to see a consultant is a joke. I've just waited 7 months to see a neurologist as i've been dizzy 24/7 for nearly a year nonstop. The gastro refuses that a gallbladder problem can cause this but i've read thousands of people saying it was a symptom of their gallbladder problem. So i'm now dealing with this on top of right flank and rib pain, nausea everyday, upper back pain, dark urine, light coloured poo, acid reflux,hot one day cold the next and just generally feeling like i've been hit by a bus.

    It's one week short of a year since i saw the obtuse NHS gastro for the one and only time. At that appt i asked for a HIDA but he refused and the only other times i've spoken to him is because i've phoned and hassled the gastro dept at my hospital and made them get the gastro to phone me.

    It's crap the NHS. I've never used it ever and when i've needed it, it's been a joke.

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    • Posted

      Hi Matt57085,  Yes they sent me to neurology and he was shocked I was even in his office but that appt took 6 months as you say.  I am going back to my Drs to try and see another Dr and say another 7 months is not satisfactory but I do not hold out much hope and yes I would be prepared to go private just to settle the issue but looking online I have drawn a blank to hospitals near me that do the HIDA test and how much it costs.  So this is why I asked in here if sweating was a symptom just to make sure I am not going bonkers.
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    • Posted

      Julian, I've noticed you've said in a post you're looking for a HIDA scan in the South East, i'm also from the South East and can't find anything either.

      Your not under East Sussex Healthcare by any chance are you? I am.

      The gastro has told me in the past that my blood tests would 100% show if my gallbladder wasn't functioning properly that's bulls##t. He can assure me after an ultrasound and a CT my gallbladders not the problem, that's bulls##t. My dizziness is nothing to do with gallbladder or gastro problems, that's bulls##t. My raised white blood cell coun't is nothing to do with gallbladder, that's bulls##t. My raised billirubin level is nothing to do with gallbladder, that's bulls##t. 

      When i saw him for the one and only time and he wrote to me and tried to discharge me, he had totally missed  out many, infact most of my classic symptoms.

      After i hassled him for another 5 months he finally ordered another ultrasound and the sonographer said my wall was thickened and a stone was seen. He referred me for surgery but put on the referral letter, for consideration for gallbladder surgery. To be honest by this time i got the feeling he just wanted rid of me. I waited 3 months to see the surgeon who said he wanted an MRCP scan and pretty much admitted that it was shocking how little testing the gastro had done. I waited 4 weeks for the MRCP and 5 weeks for the results which came back totally normal so now the surgeon isn't interested but has referred me for an endoscopy before i get re-referred back to the gastro. My endoscopy is in 2 weeks so my waiting time for this has been 9 weeks.

      My GP surgery has been useless. Before i eventually got referred i was told all sorts of nonsense including my pain and symptoms are all  psychosomatic. When my GP finally referred me his exact words were i will refer you for your peace of mind  but it's not your gallbladder, i could of punched him in the face, what a horrid thing to say to patient. Even if it's not a gallbladder problem something is wrong to be making me i'll, what a moron!!!!

      In this time i've also lost 8 stone, but still nobody gives a toss.

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    • Posted

      Hi Matt57085 no I am in Kent, I am going to make another appt with my Dr's and thrash this out because Jan 19 is to far away.  I have spent the better part of today looking at private health care and from what I see they exclude all previous ailments but I think that is the only way of finding someone who will give you a scan or op and for some reason you seem to have to be referred by your existing Dr anyway!!    Non of this makes any sense to me, if my NHS Dr has to refer me, all I am telling that Dr is I am prepared to pay for a Test which they should refer me anyway???   

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    • Posted

      Hi Julian, Yes you're correct if you take a private healthcare policy they won't cover a pre existing condition.

      When i said about paying private was more about paying to see a gastro and HIDA scan.

      Good luck with your GP. I hope you have a more understanding one than mine. I doubt you will get seen quicker through the NHS. I ended up in A&E via an ambulance last Aug. They were great in A&E. I spent 7 hrs there and they thought i might have a vascular problem and my GP would be told to do an URGENT referral to a vascular consultant. Urgent referral .......................... 4 month wait!!!!

      The NHS is up sh#t creek Julian im afraid.

      What really get's me is i paid for private healthcare for 10 years, probably cost me 50 grand whilst paying 20 grand a year tax and i was employing people at the age of 22. I packed all that in for an easier life and when i've needed the NHS it's been horrific.

      Good Luck👍

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  • Posted

    Sweating I have heard is a symptom not one myself, the dizzy spells definitely though I get an awful lot would have to agree with that one!

    I would certainly look at private but so expensive and have to find the places, some times it's literally going to A and E and making a fuss I know some people do it for silly things your symptoms sound horrible!

    Hopefully sorted soon 

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    • Posted

      Hi Steve thanks for your reply, when at its worst sweating occurs after eating but it also occurs as I am now when eating a diet that I know does not upset the Gall Bladder at night time when I go to bed.  So right now I have the ache in my lower right hand side around the back which comes and goes but when I lay down and sleep I normally awake with a damp towel which I put over the pillow.

      If I was to eat anything say cheese, milk, bacon then sweating and feeling ill occurs not only when I lay down but after eating.  The really odd thing is this sweating does not make my temperature go up.  I really am at my wits end with this and yes I will willingly pay for a HIDA test but I cannot find much info on the internet about having this done privately. 

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  • Posted

    Hi all after spending 3 yrs going to gp with most of the symptoms you are ll describringi was sent for scan which confirmed gallstones but in the gp wisdom he didn't think my pains etc were being caused by the gb so sent me to gastro fast forward another Yr after numerous tests and treatments referred finally to gp consultant who took one look at old scan and said it needs to come out I was only in the appointment 5 minutes all those years of pain and feeling crap could have been avoided, 4 weeks later I've had my pre op and am now waiting to go in hopefully within next few weeks so don't give up just pester them until they take you serious it's obvious doctors have never suffered with the effects of gall stones otherwise they wouldn't be so quick to dismiss everyone's symptoms

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    • Posted

      Hi Anita all my scans show is that I have sludge in my Gall Bladder but on my Ultrasound scan the Stenographer told me sludge can be worse than stones and that this did not mean I did not have small stones which the test would not pick up anyway.  This is my whole issue, the Stenographer has given me a completely different account to the radiographer report who has seen the scans and wrote a report to my Dr's all they have said is I have a fatty liver.

      My Dr has now referred me back to consultant but its 14th Jan 19 this is crazy.  So I am now looking at going private but I cant find much info on the net about having this scan done privately in the South East, if anyone can come up with an idea I would be grateful.

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    • Posted

      Hi originally the radiographer said I had a large mass and mentioned sludge when I went to docs he said gallstones exactly the same as when I saw the consultant Jan 19 is ridiculous to wait I'm lucky I'm in the North with one of the largest NHS hospitals I really hope you get sorted before them it's a terrible thing the gallbladder hopefully someone can give you the help you need good luck

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    • Posted

      I had an endoscopic ultrasound a week ago, and my GI told me I have sludge in my GB too.  He referred me to a surgeon, whom I see next week.  Have you heard of having it removed just because of sludge and no stones.  I had a HIDA scan, and it showed that it is working fine.  What do you or anyone else think?
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    • Posted

      Hi Lindy58133, if your GB is working I cant see them removing it.   It would depend on what your suffering with I suppose.   I was told on a Ultrasound test that sludge can be worse than stones.  From what you have said and if I understand correctly endoscopic ultrasound is looking at blocked ducts and if you have had a HIDA scan and nothing has been mentioned to you I do not see them taking it out.   The HIDA scan tells you if GB, Liver & Pancreas are all working together and that no ducts are blocked.  So if no one has said anything to you in results of those tests I would again think not.   Sludge in the GB is a precursor to stones and that a ultrasound still may not pick up small stones?

      As I say it would come back to what your suffering with I would imagine, for a surgeon to consider taking the GB out.   A lot also will depend on where you live, age etc etc.   Glad you have had HIDA though because that tells you if those 3 organs are functioning properly.

      Have they said anything to you about your diet because that could help you in the meantime.

      The problem with sludge is it "could" enter the Pancreatic duct and cause inflammation where as a stone will just block the duct and it would appear by your post none of that is happening.  I can only tell you in my case there is extreme reluctance in taking the GB out let alone trying to find out if its working via a HIDA test.  So all I can say is, your very lucky to have had your treatment and on that basis your more liable to get a proper diagnosis and help for which ever symptoms your suffering with.  Good luck and with jealousy I say that.

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    • Posted

      I don't want to have it taken out if it's not necessary, that's for sure.  Sludge is a precursor to stones?  I did not know that.  I don't have any of the classic symptoms of GB problems.  I had an acute pancreatitis attack last July, and everything checked out fine with with my pancreas--no CP.  I just can't eat anything solid without throwing up.  I've lived on Ensure milkshakes for almost a year now.  Are you not able to get the tests you need to find out what's wrong?

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    • Posted

      Hi Lindy1234,  I have acute Pancreas too which in two Ultrasound tests 2011 & 2018 were commented upon, yet the person making the report to my Dr does not.  If you are living on milk shakes I don't think its a GB issue as that is a big issue with me, I am at the moment having to cut out all Milk products of my own accord.  When I was really ill last Dec the one thing that made me ill was milk, which is why I am cutting it out altogether to see if I improve.

      I do not particularly want my GB out but then again I do not want to be living life wondering what will cause the issues I have.

      At the moment I am trying to get a HIDA scan but my Dr's all look in shock when I ask and have no idea what it is, let alone getting one.   I have been suffering for over 4 years and its been put down to stress and flu and even the male menopause but this year was different and which has brought it around to the GB and yes it maybe my Pancreas or even the fatty Liver but without doubt I have an eating disorder and yes it seems my Dr's do not seem to be worried as I am!  But then they are not the ones who suffer.

      The person on my 2018 Ultrasound said to me that sludge can be worse than stones in the GB but as I say the person writing the report to my Dr does not mention anything like it which is what I am up against now, trying to fight for something to be done simply because someone does not see from scans what another person does.

      For instance regarding your milk shake diet, by the end of last Dec I was only eating porridge made with water anything else just killed me.  Then a friend told me about eating Chinese Chicken or Beef Chow Mein and bingo I was at last able to eat something substantial with little problems and I stuck with this diet until I had my colonoscopy and endoscopy which then ruled out other food groups being the issue.   However it was then when I started re introducing other foods I started becoming ill again and Milk was a big one.  That is why I am slowly cutting out ALL milk related food stuffs but trust me it is really hard to do and you become basically a salad eater and of course fruit.  I have Soya milk which seems to be perfectly fine.   So with no help from my Dr's i have become sort of well again but I still suffer with certain symptoms, sweating, an ache in my right hand side, loose stool and chest pain, nothing like it was in Dec but they are still there and that is not nice to live with.  The worst thing of all is, all the time this is being shrugged off and if it is the GB, it can be making a simple operation into a big one, so this is why I want to make sure everything is working? 

       

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