Good morning I’m a new member here so a bit of advice would be very welcome.Ive suffered with passing the odd stone for quite a few years now but never been investigated so because one of the things I suffer from is severe flank pain I decided to have some additional ultra sound scans done,I’d had a ct done a year previous because of rib pain and it showed a 5mm stone and multiple small calculi it said.No one suggested any treatment they were more interested in the raised lymph nodes near my caecum which I had a colonoscopy done privately and two biopsies and they said all clear.My most recent ultrasound showed an additional 8mm stone had appeared in ten month period since last ultrasound so the radiologist said she wasn’t sure it was stones as they were “not shadowing“? She recommended I have a ct scan and the gp ignored so I asked my private consultant to chase gp for a referral to investigate and again he ignored request.Im now booked for a private ct scan costing £545 then I’ll have another couple of hundred consultation fees on top but there’s no choices while gps are hiding behind closed doors.I have pernicious anemia on top so I self inject every second day to keep the debilitating symtoms of that away because again ,despite havng neuro symtoms gp will only inject every 3 months which is fatal for people like me we just deteriorate so quickly as we can’t store b12.
What Id like to know is what is the likelihood of my having this kidney complaint as my brother suffers from stones too,my 24 hour urinary Calcium test came back normal so gp is not interested but thankfully my Private endo consultant shares my concern about this so if my scan confirms stones where would I go after this? My savings are fast running out and I obviously can’t work any more,haven’t for years and wouldnt want to at my age now with this illness p.a I’m exhausted all the time.Any advice that I can discuss with my consultant after this ct scan would be really helpful in helping me move forward.many thanks.
First thing needed is to identify the type of stones you make - there are more than one type. Until that is established from blood and urine samples I think there are too many if’s and may be’s to offer much further help. May be your GP hasn’t ever heard of cystinuria and knows little about it- that is quite common.
Hi Bert thank you for getting back to me I feel like I’m chasing my tail sometimes.I’ve had bloods done and 24 hour urinary calcium done both said normal within range ,no one has mentioned tesing to see what types of stones it could be,one kidney consultant I saw private at Queen Elizabeth hospital london said I’d pass the 5mm normally not to worry and the other small calculi were insignificant but I’ve since had another possible 8mm stone appear.then the last radiographer said she wasn’t even sure they were stones.I’m just hoping to get an answer one way or the other I suppose.
Thank you anyway I’ll see what this ct scan turns up with on Tuesday and just put my faith in them recommending what I do after their findings.many thanks for taking the time to reply ,much appreciated.
Hi. I can't give advice on individual cases but ultrasound can often be wrong and so I would definitely recommend a CT scan (low dose non contrast) before commenting on whether the "stones" are even there, need treatment or might be the source of pain. Hope you got this sorted.
Hi Matt thank you for the advice it’s much appreciated.I did have the low dose non contrast ct recently and it confirmed one 5mm one 4mm and one 3mm.stone it said calcium.this result differed from the ultrasound which said one 5mm and one 8mm possible stones,could the larger one have broken up by time I had the ct done ?
I asked the new gp I have if I should be having any sort of treatment and he wouldn’t discuss ,he said one thing only which was the neuro symtoms I was having because of pernicious anemia and he told me to get my private consultant to refer me to a neuro and come back if I needed to discuss.
It’s very frustrating that I have a good private endo working with me and we have resolved many of the health issues I had but I just can’t seem to find the help or advice I need from my gp there’s just no support there.
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