Worried about kidney disease its the only thing my symptoms fit..

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civilstudent
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sick of waiting weeks to be referred to places Ive diagnosed myself
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Tiger Rag
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What good is diagnosing yourself going to do?
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moonkatt
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Hasn't your GP already done blood tests? Were these normal?
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meenu89
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(Original post by civilstudent)
sick of waiting weeks to be referred to places Ive diagnosed myself
This is probably the worst thing you can do OP. Learn to be clam and wait for the GP to come back with your results.
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Joshalos
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(Original post by civilstudent)
sick of waiting weeks to be referred to places Ive diagnosed myself
What, by matching symptoms with something you've read on the internet?

Just be patient, I assume blood tests have been done and if so, they will confirm whether or not you have kidney disease. For all you know it could be something completely different. Don't diagnose yourself, otherwise every headache becomes a brain tumour.
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civilstudent
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......
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the bear
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(Original post by civilstudent)
I was going to originally tell the story but didnt think anyone would read it, probably wont but basically I know people say you shouldnt diagnose yourself on the internet but theres no other way I can explain my symptoms:confused: It started over christmas with feeling very tired and gradually I started to get visible redish urine. I tested it with a ph dipstick and it was showing blood. I went to a walk in centre and because I didnt have a temperature or any pain so I was told it wasnt an infection and that the blood might have been a one off. The next day I went to the doctors who said that 'blood in urine was enough for him to suspect an infection' and i was put on antibiotics. During this time I developed a respiratory infection and for several days my urine went a very dark brown color/almost black and was still testing for blood. The antibiotics didnt do anything and I had a uranalysis done which didnt show any infection.

Went back to my gp with a urine sample and he said 'no thats definately not right, its very heavy too' and that it needed investigating. My blood pressure and routine blood tests were ok he said. I was referred to urology who said I had blood and white blood cells in the urine. Also had a cytoscopy and my bladder was fine. Ultrasound showed no kidney stones. Again I was told by urology it was probably an infection. I developed a throat infection during the cold I had and was put on erythromyocin which helped the throat but again has not eliminated the blood in my urine. My urine then started to look normal again but when I test it it is still showing a lot of blood (turning dark green on the dipstick). I have also noticed what look like white flakes in the urine when I examined this further it was actually like stringy pus. Ive had another uranalysis done and again it showed no infection. Although both times ive been tested for infection ive been on antibiotics which could have affected the results.

So now although my urine is clear (maybe a bit rusty looking in the morning) it still has blood in it when I test it..basically its microscopic hematuria. Ive been looking up possible causes and the only one that fits is Iga nephropathy. Its an autoimmune disease which attacks the kidneys where you get episodes of visable blood during respiratory infection which then then disapears but is still detectable when tested. The urine also turns 'cola coloured' during a cold/virus infection which is exactly what mine did. It can progress and cause renal failure in a lot of people.

I cant find any other disease which fits my symptoms :/ Normally a cold doesnt cause visible blood in the urine so im just really worried. My gp wants me to wait 2 months for the urology outpatients appointment (just to tell me the ultrasound etc was fine) but they have already told me my bladder is fine and there are no stones

have you mentioned your self-diagnosed lga nephropathy to your GP ? it sounds quite rare so he may not have come across it before.
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civilstudent
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(Original post by Joshalos)
What, by matching symptoms with something you've read on the internet?

Just be patient, I assume blood tests have been done and if so, they will confirm whether or not you have kidney disease. For all you know it could be something completely different. Don't diagnose yourself, otherwise every headache becomes a brain tumour.
blood tests tested urea and electrolytes Im not totally sure if these fully test kidney function but they were normal. The thing is the disease my symptoms fit (iga nephropathy) is progressive so theres hadly any symptoms to start off with apart from gross hematuria (visible blood in urine) which comes on with a respiratory infection and then dissapears but still shows up when tested (microscopic hematuria). This is what Ive had. The blood is also cola coloured with iga nephropathy and this is what Ive had, very dark brown/black urine.

Originally I just thought well maybe my cold was bad and somehow just let blood in my urine but this only happens with iga nephropathy, normally a cold or virus does not cause blood in urine. Ive no bacteria or kidney stones.
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civilstudent
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(Original post by the bear)
have you mentioned your self-diagnosed lga nephropathy to your GP ? it sounds quite rare so he may not have come across it before.
Apparantly its one of the most common types of glomerular nephritis/kidney disease but they dont know much about it, its autoimmune and colds etc make symptoms worse.

Ive not mentioned it to him as I dont want to sound like an hyperchondriac or that im looking things up (which i am lol). I have wanted to believe its just a uti infection which wont go away but both uranalysis Ive had done have been negative for bacteria (so my gp has said its not infection) and 2 lots of antibiotics have not got rid of the blood.

He wont refer me to a nephrologist until Ive been discharged from urology in 2 months but urology have said everything is clear and its probably an infection.
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numar9501
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(Original post by civilstudent)
blood tests tested urea and electrolytes Im not totally sure if these fully test kidney function but they were normal. The thing is the disease my symptoms fit (iga nephropathy) is progressive so theres hadly any symptoms to start off with apart from gross hematuria (visible blood in urine) which comes on with a respiratory infection and then dissapears but still shows up when tested (microscopic hematuria). This is what Ive had. The blood is also cola coloured with iga nephropathy and this is what Ive had, very dark brown/black urine.

Originally I just thought well maybe my cold was bad and somehow just let blood in my urine but this only happens with iga nephropathy, normally a cold or virus does not cause blood in urine. Ive no bacteria or kidney stones.

You should make an appointment with your gp to discuss whether it could be iga nephropathy....just tell him/her you are worried it could be that...either that will help speed up the diagnosis by giving the gp a lightbulb moment (as iga n is quite rare) or else he/she will be able to rule it out and explain why
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civilstudent
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(Original post by numar9501)
You should make an appointment with your gp to discuss whether it could be iga nephropathy....just tell him/her you are worried it could be that...either that will help speed up the diagnosis by giving the gp a lightbulb moment (as iga n is quite rare) or else he/she will be able to rule it out and explain why
Ok I will tell him next time i go. I feel like Im mithering Ive been about 4 times with it but I just want to know what it is. My gp saw the blood and looked disgusted lol he said 'no thats definately not right its very heavy too' thats when he did a referral to urology to check for bladder cancer/kidney stones but these are clear. Last time I went he said it could be blood vessels bursting but its funny that it went very dark brown/dark red during a cold ive had but now although my urine looks clear it is still testing for blood when I do a dipstick. This is what happens with that iga nephropathy.

Only other thing I can thing of is either the bacterial infection wasnt deteced because i was on antibiotics during both uranalysis's (but then antibiotics didnt clear it anyway). Or a viral kidney infection..but really I cant find any info about viral UTI's.
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Joshalos
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(Original post by civilstudent)
blood tests tested urea and electrolytes Im not totally sure if these fully test kidney function but they were normal. The thing is the disease my symptoms fit (iga nephropathy) is progressive so theres hadly any symptoms to start off with apart from gross hematuria (visible blood in urine) which comes on with a respiratory infection and then dissapears but still shows up when tested (microscopic hematuria). This is what Ive had. The blood is also cola coloured with iga nephropathy and this is what Ive had, very dark brown/black urine.

Originally I just thought well maybe my cold was bad and somehow just let blood in my urine but this only happens with iga nephropathy, normally a cold or virus does not cause blood in urine. Ive no bacteria or kidney stones.
Talk to your doctor about your worries. Don't worry about coming across as a hypochondriac, the doctor is there to listen to you so don't feel like you are bothering them as it is their job. They can only come to the root of your problem through actively communicating with you and building up a clearer picture.

Urea tests are used to identify kidney disease along with creatinine levels, which I would assume were done alongside the urea test. Urinalysis would also confirm the presence of protein in the urine if there was any which would also indicate IgA nephropathy.

Haematuria is caused by many other things, not just IgA. It could be an infection just as the urologist has said. There are many sites of infection that can cause haematuria such as the kidney, bladder or urethra.

If you have any concerns, discuss them with a GP or your urologist. Whilst we can also discuss it with you, we can't give you proper medical advice as we are not qualified in that way! Just remember that they are more qualified than you in making a diagnosis and whilst it seems frustrating (I've been there before) they do everything they can to try and help you.
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shiggydiggy
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Has your GP ever sent your urine off for laboratory investigations?
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civilstudent
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(Original post by Joshalos)
Talk to your doctor about your worries. Don't worry about coming across as a hypochondriac, the doctor is there to listen to you so don't feel like you are bothering them as it is their job. They can only come to the root of your problem through actively communicating with you and building up a clearer picture.

Urea tests are used to identify kidney disease along with creatinine levels, which I would assume were done alongside the urea test. Urinalysis would also confirm the presence of protein in the urine if there was any which would also indicate IgA nephropathy.

Haematuria is caused by many other things, not just IgA. It could be an infection just as the urologist has said. There are many sites of infection that can cause haematuria such as the kidney, bladder or urethra.

If you have any concerns, discuss them with a GP or your urologist. Whilst we can also discuss it with you, we can't give you proper medical advice as we are not qualified in that way! Just remember that they are more qualified than you in making a diagnosis and whilst it seems frustrating (I've been there before) they do everything they can to try and help you.
Yea the good thing is there doesn't seem to be any protein when I dipstick it just blood. Although Ive read protein often shows up as the kidney disease progresses. Im aware that although I know the whole story of my symptoms they have studied this type of thing whereas I haven't so Im trying my best not to speculate. I have to wait 2 months until my urology follow up anyway before anything else can be done. They will just tell me that its not cancer/kidney stones like they told me at the time. Then I'l probably have to wait another few months to see a kidney specialist thats if he refers me. Its just not normal to have visable blood/dark brown urine so I cant just put it down to nothing as Ive been tempted to do lol.
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civilstudent
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(Original post by shiggydiggy)
Has your GP ever sent your urine off for laboratory investigations?
He has done a uranalysis twice and they came back normal. There was no infection I was told by the gp. There was actually blood in the samples I sent but this wasnt mentioned so I can only assume they must have just been looking for infection. This is the bit I dont understand really.. they said they were normal yet there was clearly blood in my urine in the samples. The gp did a dipstick plus you can clearly see it.

Im not sure if they will have looked at the rbs's in detail I dont think they do in a typical uranalysis. I could do with asking for one of those investigations as the type of rbc/shape of it etc will give a clue wont it.
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shiggydiggy
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(Original post by civilstudent)
He has done a uranalysis twice and they came back normal. There was no infection I was told by the gp. There was actually blood in the samples I sent but this wasnt mentioned so I can only assume they must have just been looking for infection. This is the bit I dont understand really.. they said they were normal yet there was clearly blood in my urine in the samples. The gp did a dipstick plus you can clearly see it.

Im not sure if they will have looked at the rbs's in detail I dont think they do in a typical uranalysis. I could do with asking for one of those investigations as the type of rbc/shape of it etc will give a clue wont it.
Generally when you send a urine sample off it gets looked at under a microscope and cultured for bacteria. So yes, if there were red blood cells present, the shape can give an indication if they're coming from the functional units of the kidney (e.g. IgA nephropathy) or from the urinary tract itself. This is a routine aspect of urinalysis.

Did the samples come back saying no RBCs identified? In which case it is possible that the dipstick results are a false positive. It might seem a bit silly, but you're not going out and doing an obscene amount of exercise before testing your urine, are you? Also, it is possible to have +ve dipstick and it not correlate with any significant urological pathology (it can just simply be an incidental finding and is especially true in young people with no risk factors).

Either way, you're receiving the right referrals and investigations, by the sounds of it.
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civilstudent
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(Original post by shiggydiggy)
Generally when you send a urine sample off it gets looked at under a microscope and cultured for bacteria. So yes, if there were red blood cells present, the shape can give an indication if they're coming from the functional units of the kidney (e.g. IgA nephropathy) or from the urinary tract itself. This is a routine aspect of urinalysis.

Did the samples come back saying no RBCs identified? In which case it is possible that the dipstick results are a false positive. It might seem a bit silly, but you're not going out and doing an obscene amount of exercise before testing your urine, are you? Also, it is possible to have +ve dipstick and it not correlate with any significant urological pathology (it can just simply be an incidental finding and is especially true in young people with no risk factors).

Either way, you're receiving the right referrals and investigations, by the sounds of it.
I rang reception to ask if the results were normal and I was told they were. Ive not seen the results on paper or anything. The gp also said there was no infection. There has been no mention of types of rbc's etc I did not ask. I didnt think they analysed the the blood cells usually but could be wrong.

Ive not exercised since 20th december and this all started on boxing day feeling lathargic and blood in urine (my mum originally tested it shes a nurse) and Ive been testing it regular (used both old and new dipsticks) it always shows up blood (dark green on the dipstick). Not only have I visably seen it for 3 weeks (red/dark brown urine) but urology confirmed there is blood. My gp also tested it in his office/consulting room and said there is a lot and its very heavy he wouldnt have referred to urology otherwise as blood is my only symptom. Theres no mistaking it not only was it seen but urology and my gp have had it show postive (and me when I test it regular)
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shiggydiggy
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(Original post by civilstudent)
I rang reception to ask if the results were normal and I was told they were. Ive not seen the results on paper or anything. The gp also said there was no infection. There has been no mention of types of rbc's etc I did not ask. I didnt think they analysed the the blood cells usually but could be wrong.

Ive not exercised since 20th december and this all started on boxing day feeling lathargic and blood in urine (my mum originally tested it shes a nurse) and Ive been testing it regular (used both old and new dipsticks) it always shows up blood (dark green on the dipstick). Not only have I visably seen it for 3 weeks (red/dark brown urine) but urology confirmed there is blood. My gp also tested it in his office/consulting room and said there is a lot and its very heavy he wouldnt have referred to urology otherwise as blood is my only symptom. Theres no mistaking it not only was it seen but urology and my gp have had it show postive (and me when I test it regular)
When you say urology confirmed it, how did they? Dipstick or urinalysis?
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civilstudent
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(Original post by shiggydiggy)
When you say urology confirmed it, how did they? Dipstick or urinalysis?
I don't know... but I had only waited 20 minutes before giving the sample and them telling me there was blood. Wouldn't a urinalysis have taken longer? I don't know exactly how they tested it I should of asked.

I turned up for my appointment and they took a sample. 20 minutes later I was called in see see the urology nurse and she said there was blood and white blood cells in my urine. Then she sent me for a cytoscopy to look in the bladder and I had an ultrasound scan of my kidneys on another day.

You have a point though, its odd that the uranalysis came back normal although I assumed they were only looking for infection :/

I hope all the dipsticks are wrong but the blood has been extremely visable too. Ive had it tested by dipsticks in several places gp, walk in centre (twice), urology and at home.
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shiggydiggy
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(Original post by civilstudent)
I don't know... but I had only waited 20 minutes before giving the sample and them telling me there was blood. Wouldn't a urinalysis have taken longer? I don't know exactly how they tested it I should of asked.

I turned up for my appointment and they took a sample. 20 minutes later I was called in see see the urology nurse and she said there was blood and white blood cells in my urine. Then she sent me for a cytoscopy to look in the bladder and I had an ultrasound scan of my kidneys on another day.

You have a point though, its odd that the uranalysis came back normal although I assumed they were only looking for infection :/

I hope all the dipsticks are wrong but the blood has been extremely visable too. Ive had it tested by dipsticks in several places gp, walk in centre (twice), urology and at home.
Yeah sounds like they did a dipstick.

Well, did the urologist recommend a course of action for your GP?
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