Type 1 Protein in urine

[Ellz_10]

Hi,
My boyfriend has been diagnosed type 1 for just over a year and was called to the doctors regarding his recent urine sample. He’s left extremely upset having been told by the doctor his kidneys are leaking, he’s on a slippery slope and won’t live past 50...
He’s devastated and I’m upset by this also. The doctor only told him to stay healthy and join a support group ..

Is this as bad as it sounds or can he bring this back to being healthy ?
We are very worried, especially since he’s only been diagnosed fairly recently

 

[walnut_face]

http://www.phlaunt.com/diabetes/14046702.php

Is a good read, basically his kidneys are not filtering efficiently, and protein is leaking into the bloodstream. His Dr may be influenced by the UKPDS study. (Very) Good BG control may well keep problems at bay. You might also like to search for Dr Bernstein a well respected Dr who has Type 1 himself and is well into his 80's

 

[KK123]

Hi,
My boyfriend has been diagnosed type 1 for just over a year and was called to the doctors regarding his recent urine sample. He’s left extremely upset having been told by the doctor his kidneys are leaking, he’s on a slippery slope and won’t live past 50...
He’s devastated and I’m upset by this also. The doctor only told him to stay healthy and join a support group ..

Is this as bad as it sounds or can he bring this back to being healthy ?
We are very worried, especially since he’s only been diagnosed fairly recently

Hi there, how horrible for you both! Did the Doctor say exactly that??? Did he say why this is happening and whether there is anything your boyfriend can do to improve it? To be sent off with those words seems very cruel.

 

[Ellz_10]

Hi there, how horrible for you both! Did the Doctor say exactly that??? Did he say why this is happening and whether there is anything your boyfriend can do to improve it? To be sent off with those words seems very cruel.

Yes, he came out the appointment in tears saying this is what he has been told and that it’s not reversible and the things he can do to improve are ‘stay healthy’ ‘continue with your sport’
He’s only 20 as well ..

 

[Dark Horse]

Complications of diabetes generally take many years to develop and, as people with type 1 are diagnosed very soon after the disease develops, it seems very unlikely that problems with diabetic nephropathy would develop after just one year. However, there could be a problem which is unrelated to diabetes. The usual rule is to never trust a single test result so the test should have been repeated - was it? Do you know the actual test results? Were there any other tests (proteinuria can have other causes)?

Some info about diabetic nephropathy:-
https://patient.info/doctor/diabetic-nephropathy
https://www.diabetes.org.uk/guide-to-diabetes/complications/kidneys_nephropathy

Some info about proteinuria:-
https://www.kidneyresearchuk.org/health-information/proteinuria

 

[Ellz_10]

He was told that it was a small amount of protein in his urine and that he should do another test before his next meeting in April
He’s trying to find a local support group but we are not sure there is one in our area and the Diabetes UK is showing any

 

[therower]

Hi @Ellz_10 . Welcome to the forum.
Your boyfriends doctors sounds a bit of a sadistic sod to be honest.
I've been doing T1 for 27 yrs and have on occasion been told by my diabetic consultant that I've had a small amount of protein in my urine. Rather than issue me with a death sentence, I was asked to do another sample. Apparently a urine sample first thing after rising can show a slight amount of protein, also when the sample is taken can have a bearing. Mid flow is recommended as opposed to the start of the process.
Every time this has happened I've given another sample there and then, and then been informed, no problems all clear.
Suggest you get a more sympathetic/ knowledgeable doctor.

 

[Antje77]

If this doctor really said that, he is an idiot. Find another doctor and a second opinion and file a complaint.

 

[Ellz_10]

Hi @Ellz_10 . Welcome to the forum.
Your boyfriends doctors sounds a bit of a sadistic sod to be honest.
I've been doing T1 for 27 yrs and have on occasion been told by my diabetic consultant that I've had a small amount of protein in my urine. Rather than issue me with a death sentence, I was asked to do another sample. Apparently a urine sample first thing after rising can show a slight amount of protein, also when the sample is taken can have a bearing. Mid flow is recommended as opposed to the start of the process.
Every time this has happened I've given another sample there and then, and then been informed, no problems all clear.
Suggest you get a more sympathetic/ knowledgeable doctor.

Thank you I will show him this information

He is refusing to see said doctor again but has limited options as he is currently with a university doctor surgery with only 2 doctors and the rest are nurses

 

[EllieM]

I thought protein in urine could be caused by a urinary tract infection? Fixable with antibiotics ....
I hope the doctor tested for this as it does need treatment.

 

[JohnEGreen]

Normal routine would be to retest if persistent then to refer to an urologist for further investigation.

My daughter a few weeks back was found to have protein and white blood cells in urine turned out to be urinary tract infection antibiotics sorted it out.

For the doctor in question to leap to such a drastic conclusion is awful.

 

[tim2000s]

Along with the advice everyone else has given, I'd suggest lodging a formal complaint about the doctor too. That's unacceptable behaviour.