Kidney damage after 2 years of DM1?worried mother

[Natt]

Hi everybody,

The last have been full of fear and dread for us. The latest diabetes check up showed high levels of albumines and proteins in the urine. My son was diagnosed in 2017 and we have managed quite well, his HbA1c tests were in 5-5,9% range, only the last one from September is 6,4%. He is 13 and lately his growth hormones have been messing with the numbers. The slight increase of proteins in the urine was first noticed 6 months ago and doctors said we should just monitor, but now they have become quite high. They have referred us to the nephrologist, and we are currently waiting for the appointment and additional tests. His endocrinologist shared the urine test results with the nephrologist on the Whatsapp, who said that it is not to worry about, but I guess she said that to calm us parents down a bit, until all the tests are done. They don't see it as urgent and I don't understand it. My husband is a doctor, a pediatrician himself and is quite worried as well. My husband also suggested thatwe should check his blood pressure and we are doing that for a few days now. Last nigh it was 130/85... so another thing.

Needles to say that we are going crazy with thoughts of kidney damage at such young age and the grim perspective and seriousness of the illness. We have just settled down a little with the diabetes and now this... Maybe just to say that the quantity of urine he gave for testing was very small, and that precisely those few weeks his sugars were running wild.

I don't know exactly what I am looking for, maybe some of your experiences with similar matter, maybe a bit of reassurance and courage, any feedback would be appreciated....We are going crazy waiting for that appointment and dreading of the outcome. It is hard to stay positive and keep smiling face in front of our son.

Thank you for reading. Any advise, a though or an idea would mean a lot to us right now.

Natt

 

[Reemap]

Hi there.. I am not type 1 hence its difficult for me to comment. I delivered a baby in April and understand what a mother goes into if anything happens to her son. Please do not worry and all will be good. Just keep faith..

 

[Muneeb]

Hi everybody,

The last have been full of fear and dread for us. The latest diabetes check up showed high levels of albumines and proteins in the urine. My son was diagnosed in 2017 and we have managed quite well, his HbA1c tests were in 5-5,9% range, only the last one from September is 6,4%. He is 13 and lately his growth hormones have been messing with the numbers. The slight increase of proteins in the urine was first noticed 6 months ago and doctors said we should just monitor, but now they have become quite high. They have referred us to the nephrologist, and we are currently waiting for the appointment and additional tests. His endocrinologist shared the urine test results with the nephrologist on the Whatsapp, who said that it is not to worry about, but I guess she said that to calm us parents down a bit, until all the tests are done. They don't see it as urgent and I don't understand it. My husband is a doctor, a pediatrician himself and is quite worried as well. My husband also suggested thatwe should check his blood pressure and we are doing that for a few days now. Last nigh it was 130/85... so another thing.

Needles to say that we are going crazy with thoughts of kidney damage at such young age and the grim perspective and seriousness of the illness. We have just settled down a little with the diabetes and now this... Maybe just to say that the quantity of urine he gave for testing was very small, and that precisely those few weeks his sugars were running wild.

I don't know exactly what I am looking for, maybe some of your experiences with similar matter, maybe a bit of reassurance and courage, any feedback would be appreciated....We are going crazy waiting for that appointment and dreading of the outcome. It is hard to stay positive and keep smiling face in front of our son.

Thank you for reading. Any advise, a though or an idea would mean a lot to us right now.

Natt

It may well not be diabetes related. Could be something else completely. I have had diabetes for nearly 20 years and I'd say for 10 years of that my hba1c ran much higher than 6.4%. Kidneys are still functioning fine. Changes in diet and lifestyle may be a cause of temporary increase. Kidneys generally get damaged with long term uncontrolled diabetes, so although its a worry for you, its important not to stress too much. I know people who have had alerts then further tests came back as ok.

Maybe someone with more experience can add.

 

[Natt]

It may well not be diabetes related. Could be something else completely. I have had diabetes for nearly 20 years and I'd say for 10 years of that my hba1c ran much higher than 6.4%. Kidneys are still functioning fine. Changes in diet and lifestyle may be a cause of temporary increase. Kidneys generally get damaged with long term uncontrolled diabetes, so although its a worry for you, its important not to stress too much. I know people who have had alerts then further tests came back as ok.

Maybe someone with more experience can add.

Hi, @Muneeb , thanks.
yes that's exactly what worries me - that it is a separate illness, which is progressive and not related to diabetes, where, as far as I know, with proper care and control of D, you can keep the early nephropathy under control for a long time...

 

[novorapidboi26]

There could be several reasons for protein in the urine.......a UTI perhaps...

what is his latest eGFR result?

I don't think its anything to worry about going by his length of diagnosis and his control so far....

 

[Natt]

There could be several reasons for protein in the urine.......a UTI perhaps...

what is his latest eGFR result?

I don't think its anything to worry about going by his length of diagnosis and his control so far....

Hi @novorapidboi26
I was just checking the test results from 6 months ago and now. He didn't have creatinin in the blood 6 months ago, and I dont' have the blood results from the latest analysis, only urine test results. But I remember his endo telling me on Monday he doesn't have creatinin in the blood - I assumed that she was reading from the latest test results?
I can see that his albumines have increase 4-fold over period of 6 months.. This is what worries me also, how quickly the reesultss worsened
Anyway, I think this will be done first, once they call us to the clinic.

 

[Jaylee]

Hi @Natt ,

I'm seeing a few "factors" regarding what's happening.. In short. You & your husband are concerned & worried about your son.
Your husband is also a doctor. By all acounts, doc's can be some of the "worst patients." & by proxy he is sort of the "patient" on behalf of your young son.

It may not just be "growth hormones?" Kids can pick up on "family dynamics." Including parental distress. (For whatever reason.)
No lad likes to see his mum worried.. The "wild" BGs could be attributed to some of the above..

Best wishes regarding the results for your son...

 

[EllieM]

T1 for 49 years here, diagnosed when 8. (This was pre glucometers, and I can guarantee my hba1c would have been above 7 (probably 8 or 9) for my entire teenage years). Still alive and kicking, and though my kidneys aren't as wonderful as a non diabetic's, the results are still in normal range. I have had protein in my urine several times, coinciding with UTIs.

Like the others, I find it very very hard to believe that he's got diabetic damage after such a short period of diabetes and with such excellent hba1cs.

They don't see it as urgent and I don't understand it.

Honestly, I understand why you're panicking, but if the specialist says it isn't urgent, then it isn't. He/she is the one with the experience and knowledge to tell. In my (admittedly limited) experience, doctors are brutally honest.

Maybe just to say that the quantity of urine he gave for testing was very small, and that precisely those few weeks his sugars were running wild.

That's a very valid point. Results from a 24 hour urine collection would be much more accurate. (Or don't they bother with those any more?)

Good luck. It sounds like you are doing an awesome job in managing your son's diabetes.