Feeling so ill and sick of my GP practice.

Thats terrible treatment, Gp's make me sick they get paid vast sums of money and do nothing but moan. I can understand it must be a frustrating job when people turn up with every cough ache and fart they have but honestly how can they earn £100000+ and paramedics £22000+ is beyond me!

Glad you got sorted but if your gp had been on the ball your gallbladder woulld have been sorted and your liver cancer spoted earlier.

How long did you have your symptoms before you got diagnosed? What tests did you have? Was it gallstones or gallbladder not working properly?

Thanks

I had a growing lack of appetite from the spring of 2016. I was also feeling tired. I'd visited GP complaining of that the previous year. I was diagnosed with vitamin D deficiency. I took a course of vitamin D for six weeks and I did feel a bit better. Interestingly the liver processes vitamin D.

I also had a routine check up and found my cholesterol levels had gone up significantly despite no change in diet (I'd always eaten fairly healthily and was even a vegetarian for a number of years). I think the GP thought I'd been scoffing pies as she clearly didn't believe I'd not made changes to my diet. She told me to make healthy changes to what I was eating with a further cholesterol test in six months. My gallstones turned out to be cholesterol stones.

In July I developed pain which was mainly central then. The pain lasted four days. I had a bout of feeling shivery as if I had flu. Couldn't get a GP appointment so ended up at UCC. The doctor there thought I had kidney stones as there was also, coincidentally, blood in my urine sample. Went home with painkillers and antibiotics, which seemed to do the trick for a while.

During August, I had a few more attacks. They weren't as bad as that first one and didn't last as long. I had some diarrhoea but thought I'd just eaten something that disagreed. I did wonder if I had an ulcer as my mother had had a duodenal ulcer.

Then in September, I had a really bad attack, which also lasted four days. I couldn't sleep or eat for the pain. I had nausea but wasn't sick. I went to UCC again (no GP appointment available again). The doctor diagnosed gallstones and I was referred to triage. I was given painkillers and the pain subsided so I was sent home with instructions to attend for ultrasound next day. Ultrasound showed gallstones. They said they'd get in touch.

Exactly a week later I had another bad attack. I was shivering again and finally I fainted with the pain. This time I got a GP appointment and he referred me to triage again. I was badly jaundiced and spent a week in hospital. I was catheterised, on oxygen and IV fluids and antibiotics. During my stay I had an MRI scan and an ERCP to insert a stent to keep bile flowing into my bile duct.

I returned early in November for a second ERCP to have stent replaced. Both ERCPs failed to remove the larger stones. I went home and expected an appointment to come through.

A week before Christmas I had a five hour long attack. Again there was no GP appointment but the practice nurse referred me to hospital. The pain was central and upper right quarter, also pain in right shoulder. Found out then that

I wasn't even on the waiting list so I signed up to have any HB surgeon perform my op. I also said I could be available at short notice. I was desperate by then.

Mid January I got a call asking me to attend for a pre op assessment next day with laparoscopic surgery within ten days (a Saturday as they'd had to schedule more surgeries due to increasing numbers of patients with gallstones).

The following Saturday I duly turned up, nil by mouth, to be told there was no point removing my gallbladder by keyhole surgery as I had numerous large stone in my bile duct. However they found me a bed and I had open surgery that day. I was in for a week, then discharged.

I was home a week when my temperature started to spiral.

We rang the GP. No GP was available! He was off sick.

We rang the hospital. As it had been a week since discharge, I could not be readmitted.

We resorted to 111 service. They made an appointment at a UCC for me.

We were just setting off when the hospital rang and said to come in after all. I should have realised something was wrong then.

I was put on fluids and IV antibiotics again and was supposed to stay in for five days until the antibiotic was finished.

Next day I was told histology had found a T1 N0 M0 tumour in my gallbladder. This means the tumour was in the wall of my gallbladder. They remove lymph nodes close to the gallbladder as a matter of course during surgery. Histology said the growth hadn't spread to them and they could find no metastasis. I had a full CT scan to check for visible metastasises elsewhere, but there didn't appear to be any. They sent me home after three days.

I was discussed on the Monday at the Multi Disciplinary Team. On Tuesday I got a letter with an appointment for Wednesday.

Five weeks after my gallbladder surgery, I had liver resection through the same incision.

I was in hospital for a week then discharged.

It good to be without the pain, though my rh side is still tender and I get very tired. But I'm up and about caring for my four year old grandson and doing a bit round the house again. I feel better than I have in years.

I should point out that gallbladder cancer is extremely rare. I would not wish to frighten anyone. I'm so lucky they found it when they did as most aren't found until they're inoperable. I will have six monthly checkups for two years followed by three years of annual checkups.

Wow you really have been through it. I'm so glad it all worked out for you and your on the mend.

What worries me is my constant symptoms and having to wait for a consultation at the hospital and then having to wait for whatever tests they want to do after the consultation. This is going to talk months. I'm already missing out on things with my 4 year old as i don't feel well enough to do things.

I suffer from bad anxiety and this is causing havoc!

Yes I 'have been through it' as you say, but I'm still here and doing my best to keep it that way.

I think there is still an 18 week referral to treatment rule in place. You could check on the NICE site. That means they have eighteen weeks from GP referral to commence treatment. They get fined if they don't meet this criteria. It was never mentioned to me, I only found out about it because I have family members who work in the NHS. You could ask the hospital about it?

I really don't know how people cope with the symptoms and manage to carry on with life. I'm retired, so work wasn't an issue for me, but I do care for my four year old grandson so my daughter can work. Luckily the staff at the nursery he goes to have been absolute stars and they've taken him for extra time at really short notice but it's cost his parents a small fortune. My daughter did all my ironing for weeks, as I couldn't even lift an iron and my husband did everything else as I couldn't push a vacuum cleaner or shopping trolley. lift a kettle or heavy pan, couldn't lift shopping bags etc. We did eat a lot of low fat ready meals whilst I was ill to save husband cooking! My other daughter and her husband helped out with gardening. They have four children, so she works too. So it affected the whole family, which makes me feel guilty.

When I was only a month post op from liver resection, husband was admitted to hospital for a week for emergency knee surgery and I had to stay with daughter as I couldn't manage. I wasn't even allowed to drive at that point and had to rely on my daughters for lifts to hospital. This makes me sound like a geriatric, but I'm normally very fit and active with no major health issues, so you take it badly when you can't do anything. It's not just the surgery that's the problem: it's trying to maintain your life alongside all the appointments and procedures too.

I've had some good support from this site. Complete strangers have been supportive, offering advice and encouragement.

I'm the sort who doesn't make a fuss. When I had attacks, I went to bed and gritted my teeth. In retrospect, I should have attended A&E every time I had an attack. That might have made them realise how urgent my surgery was, but I soldiered on like an idiot, so they had no way of knowing how bad I was. I really was my own worst enemy. My advice to you is pester. Let them know what you're going through at every available opportunity.

Hi Thanks for the reply and information. It sounds like you have a great family network.

I too feel guilty as my partners Dad is picking my 4 year old up from nursery at the mo and he's 81. Yes if i wasn't having a break from work he would be more than happy to but whilst i'm sat at home it's causing a lot of guilt.

It's interesting what you mention about the lifting things as the more i do the worse i feel. It was starting me to question myself thinking is this all muscular even though i really know something's wrong.

I've looked at the NHS website and it says it's 18 weeks from gp referral until treatment, so thanks for that.

Ok a little update. I went to the doctots Friday as i'm still feeling very unwell. I asked to be weighed again (yes i had to ask!) and i'd lost nearly 1 1/2 stone in three weeks! Thats a total of 5 stone in under 6 months. For the first time in all of the many visits in 6 months complaing of feeling unwell the doctor looked very concerned. He's ordered a load more blood tests and changed my hospital appointment to the 2 week maximum wait. I asked months ago if it could be cancer and he was not concerned going by my blood tests, but this time he would not give me an answer. So now i'm panicked! I got in my car and cried! I was going to ask why i have'nt been offered a urine or stool sample but with his concerned look i panicked and didn't. Surely when somebody has stomach issues that would be one of the first tests?!

Yes i've only eaten very low fat meals since January and hardly any sugar but is it possible to loose nearly 5 stone since January and 1 1/2 stone in 3 weeks?

Also i guess the hospital are going to want to put a camera up my bottom and down my throat and as i have anxiety issues i struggle at the dentist never mind that.

Any thoughts would be most welcome!

At least your GP Is taking you seriously now.

You may be worrying unnecessarily. Worry can even make you lose weight. You've lost 3.5 stones in 5 months plus a further 1.5 stones in 3 weeks. I lost 3 stones in 4 months, then since gallbladder surgery 5 months ago, I've lost a further stone. My weight loss is largely down to eating very low fat and being nil by mouth quite a lot. I also suffered from loss of appetite for several months. Since the liver resection my weight loss has slowed. Apparently the liver makes the body hang onto calories in order to regenerate itself, so this explains why my weight loss has slowed. As my cancer hadn't spread, it was these other factors that caused my weight loss. Lots of people who post here have lost huge amounts of weight. It's not that unusual. Worrying won't help.

I also cried when I had my diagnosis- not for myself, but for my husband and family. It's a really scary experience.

You are sedated when they put the cameras in you. It's not like the dentist where you only have your mouth numbed. I have heard of patients having a general anaesthetic due to anxiety, but there may be reasons why they can't in your case. Tell them how you feel.

Keep us in the picture. We've all been through it and this site exists to offer support to each other.

Thanks for replying. I'm going round in circles here with my constant googling. This hospital appointment can't come soon enough. I'm nearly 5 days into my urgent 2 week referral so will hopefuly hear something soon.

I've had a different experience . After having a baby was when my trouble started !! Thought I must have pulled a muscle or something as I had abdominal pain out of nowhere. The first time this Haopened was in the middle of the night. After having some painkillers I managed to get back to sleep and just ached for a few days after. Fast forward about 3 months and another attack hit. I was very fortunate that I got an emergency appointment at the doctors . I never see the same doctor twice any way but was an older woman I explained I had pain in my right abdomen which was lasting hours and crippling me which was difficult as baby was 9 months by now. She prescribed more pain killers and referred me for a scan straight away as she said gall stones are more common with women who have had children. I had also yo yod on my weight ( I am overweight I know I enjoy way to much cake ) but the yoyoing was due to needING fertility treatment lost lots of weight had the drugs and put half back on in a week ( damn hormone tablets ) anyway took 5 weeks for the scan to come through which had to be reprated the following week ( had to fast for longer as gall bladder was still contracted to much to see anything ) i have multiple stones. I have had 4 acute attacks and along with one of these went slightly jaundice . And have regular smaller attacks which I can just about Bare if I take pain killers the minute I feel a twinge in my abdomen. I was referred to surgeon January. ... I have yet to hear anything and attacks are becoming more regular and in have also been doing my teacher training do have had to avoid hospital visits in case I missed school days. I am fortunate enough to have private medical insurance from work and have my first private appointment on Friday with the gi surgeon ( should have been last week but that's a while other fail of a story ) . Anyway I have been suffering for 15 days in a row now and with a young child it has been hell I have lost a stone in 5 days I'm sick of a pigeon diet . I think i would cope better if the pain was in one place but it's the radiating into the back and right shoulder which really gets it !!!

Hi, Thanks for the reply. It's lucky the doctor you visited was on the ball and your scan showed stones. Most people seem to get sent away with a ppi to start with. I just wished my scan had shown stones then i would know. I asked for my scan report last week, which i now have and it say gallbladder clear with no wall thickening, bile duct of normal size and common bile duct normal size. So that only leaves me with it's not working properly. At least now my dictor is now taking me seriously as i've lost a lot of weight fast. Yes i hate the back pain i've had it everyday since March, sometimes on the left and sometimes on the right!

Good luck with your surgeon app, teacher training and congrats on your little one.

You have my sympathy, Sam. It must be very difficult coping with a child on top of health issues.

Doctors used to say gallbladder sufferers were fair, fat, forty and fertile, so yes having children increases your chances of gallstones. Now they also say dieting and losing lots of weight can cause it. I've always had a problem with maintaining my weight if my hormones are messed about with as yours have been. Some gallstone patients aren't fat: quite the reverse. I suspect it's not being fat that causes gallstones, but that a sick gallbladder may affect the ability to digest fat and cause it to be stored elsewhere in the body.

Are you eating a low fat diet? I found this reduced both the frequency and intensity of attacks. Also BRATs: bananas, rice, applesauce, tea and toast seems to help some get over a bad patch. Obviously this is a short term fix and not to be used long term. Personally I couldn't eat anything during attacks that sometimes went on for four days. Nor could I sleep and I was exhausted by the time I had surgery. I'd also had bad jaundice that kept me hospitalised for a week.

I hope all goes well on Friday. Where I live, private hospitals have only slightly shorter waiting lists than NHS hospitals, so don't hold your breath. It helps if you can be available at short notice as you may get a cancellation.

Yeah nevermind having never really having to deal with hormones until recieving treatment to be ableto conceive !! Then this !! Yep all low fat right and bland and boring cant bring myself to eat much else. I live in a deprived area to be honest so of your going private you have good chances of getting sorted quickly I graduate and go o holiday in 3 weeks so would have to wait which I'm gutted about I want to enjoy my holiday after a long hard year !!

Hi Katherine, Thanks for replying. Sorry to read your still having issues and hope the injections get you sorted.

My doctor last Friday did me a fast track app to see a gastro as i'd lost another 1 1/2 stone in 3 weeks. I had a phone call Wednesday afternoon and i went yesterday. The appointment was very rushed and i left very frustrated and annoyed. I didn't even get a chance to say all my symptoms. I asked about a HIDA scan and was told i wouldnt get one as my blood test keep coming back normal and my ultrasound showed no thickening of the gallbladder wall. The only thing that came from the app was he's ordered a ct scan of my entire abdominal area and i should hear about an appointment within a couple of weeks.

Hi Matt, yes I understand your frustration, I was fast track too which meant I had a gastroscopy and then a ct scan to check what was happening and if it was anything nasty but mine came back as normal. I then had an mrcp before having the hida scan so in all it took 6 months before I got a diagnosis. I think with the nhs as the symptoms are similar in many conditions they'll do the first tests really quick but unfortunately it doesn't help when you're still in pain and it still comes back as normal. My blood tests were normal too so they'll have to do a hida scan eventually for you if everything else comes back as normal as the gallbladder not working properly won't be seen on any of the other scans.

Stick with it, I know its frustrating when the appointments are so short and you don't feel as though you've told them everything.

Keep me updated with how you're getting on. x

 

Thanks so much for replying. Could i ask what your symtoms were please. I take it you had an ultrasound before anything else?

Thanks

Hi Matt, yes of course. I started off waking up one night in severe pain just under my ribs on the right hand side, it had ease the following day so I didn't think anymore of it but it gradually got more or a distraction hence I went to my gp who arrange for an ultrasound first and when that came back as normal the only thing she had to go on was my bloods which were ok but she wanted to keep an eye on them. At that point and because the pain was increasing and I was starting to feel sick all the time with food she decided to put me in for a gastroscopy via the 2 week fast track route as it had already been over 2 weeks and the pain was increasing. The discomfort with food got a whole lot worse, I had already done some research on gallstones so I cut out fats and spicy food and started to eat smaller amounts. I did start to notice that I was loosing weight which I mentioned to the gastro consultant as my gp had referred me to him at the same time of the referral. He was actually really nice and very easy to talk to as the gastroscopy and biopsies came in as normal he then requested a ct scan. Unfortunately I ended up with a greater intolerance to food and found that I would be really sick if I ate too much and in awful pain sometimes starting at the end of the meal or 1/2 hour later and going on for several hours. The pain was still in the upper right quadrant under my ribs but also went straight through to my back and up my spine and along my shoulder blades.

After the ct scan came back as normal everything seemed to slow down as I obviously hadn't got any cancerous masses. My gastro decided to check for addisions disease even though its rare just to rule it out and also requested an mrcp and when that came back as normal a hida scan in December. 

The pain continue throughout all of this and every so often the level would increase. They also thought I might have sphincter of oddi dysfunction which they gave me meds to try but I couldn't take them as they had too many side effects. By this point I had lost over a stone which is alot of me as I'm not that big anyway. Because of the weight loss I started to get dizzy and feel faint and obviously my work suffered as I couldn't always go to work. Luckily in some ways I'm self employed with my husband so we managed.

If you get to have a hida scan they gave me a fatty drink after the first 10 mins which after another 10 mins I started to feel pain and really uncomfortable as I was lying their for 60 mins while they scan you. They found out that my gallbladder was only working at 14% so it wasn't doing its job properly.This was just before Christmas so I didn't get to see the surgeon until January. He also thought that not all my pain was down to the gallbladder and because of his schedule he couldn't do the surgery until March. I couldn't sleep as it was very uncomfortable  trying to lie on my right hand side and again the pain kept on increasing but being worse in the morning and evening and easing a little during a day. My gp gave me naproxen and cocodamol which even though it didn't  get rid of the pain I think it did take the edge off to a point unless the pain was really bad. 

Luckily I didn't have to go to a&e unlike some on this site.

The surgery itself was easy and I was very well looked after but I think it may have exacerbated the nerve entrapment that it looks like I have now but it may well stem from a car accident or falls that I had years ago but I won't know properly until next week when I go in for treatment.

Sorry this is all a bit long winded but please contact me again if you need anything more specific. For me the pain gradually increased over the 8 months before surgery as it wasn't as constant initially and I still had some quality of life except where food was concerned but towards the end I was in constant pain. I've lost over a stone in weight and I'm still finding it difficult to put any on.

Keep me updated when you get a date through and if anything changes.

Hi Katherine, Thanks so much for such an informative and detailed reply. It sounds like your gp and gastro were really on the ball. It 's great lyour gastro consultant was willing to really help in getting you diagnosed with the problem. Yes my gastro is sending me for a ct scan, but when i asked him when it would be he looked at me as if to say how the hell should i know. Was your ct scan with the contrast that you swallow or have injected or without any contrast? I've looked at the ngs choices web page for my hospital and it has bad reviews which is a bit of a worry.

Thanks

Sorry NHS website reviews for gastro and liver services is rubbish for my hospital, but the overall rating is ok for the entire hospital.

Hi Matt, yes it was injected contrast which felt very strange, a it goes in you have a really warm feeling go through your body and then the feeling that i might need to pee! but they say that is perfectly normal.

If you're on the 2 week pathway then you should hear pretty soon they may even phone you especially if they have a cancellation. Its not really what you want to hear is it, I know they are really busy and see thousands of people each year but a bit of compassion wouldn't go amiss. 

Yes I think I have been quite lucky with the doctors that I've seen its just the waiting that makes things worse but then everything I've had done would cost a fortune if I had to have it done privately.  From first being seen to having surgery was 10 months in total but I know people have waited alot longer than that. I did have a private consultation a couple of months ago because of the pain that I'm still having and that was great, once my gp had done referral I was seen within a couple of days and he did push for my last scan to be done fairly quickly in comparison to waiting.

Will you go to a main hospital if/when they do surgery, I went to one of the cottage hospitals for surgery and my surgeon is mainly based down there but I must say that the nursing staff I had were excellent, where I am you got 2 nurses assigned to you that completely look after you and wouldn't let me go home until I was ready as I was a bit sick after surgery but then its no wonder with all the meds they give you!

Let me know when you get your date but you must go back to your gp if anything changes or gets worse or go to a&e if its really bad.

Keep in touch 

 

Hi Katherine, Thanks for that. I'm not sure if my ct scan is still under the 2 week pathway, my gastro consultation was and i was seen within 6 days so maybe it is. Yes if this does turn out to be my gallbladder, i will be trying to go to one of the smaller private hospitals that also do NHS work in my area. I agree the NHS is fantastic as they've been fantastic with my 77 year father who's had so much treatment over the last few years. Already i've spent 4 months going to my gp and only just had my first consultation at the hospital. And i'm worried about the huge amount of weight i'm losing.

Hi Matt, yes it should be under the 2 week pathway so hopefully you'll hear soon.

With regards to your weight keep your gp informed of how much you've lost since the last visit. I did with the consultant as initially you see them after each test so just let them know and they can then right it in your notes.

Unfortunately you do loose weight with gallbladder problems as food causes problems so you don't eat so much. It all depends how much you can loose before you start to get into the danger zone with weight loss. Keep an eye on it and don't hesitate to go back to your gp if its really starting to worry you.

Hi Katherine, I'm very concerned about my weight loss. This ct scan can't come soon enough. Thanks for the info with the 2 week fastrack.