Maybe you guys can help. I’m pretty discouraged right now.
I have never shown protein in my urine consecutively or been referred to a kidney doc by my endo.
But over my 24 years with type 1, i’ve “had a little protein” twice: One time 8 years ago, and one time two years ago.
My doc has said “you do NOT have kidney damage from diabetes” and that it might be exercise, might be sugars.
I’m just super, super nervous that i’m one of those genetically super susceptible type 1s for microalbuminuria.
But I want to say that I do NOT have retinopathy, and “Diabetic retinopathy precedes diabetic nephropathy so much so that the dictum in medicine is “In diabetics with microalbuminuria and without diabetic retinopathy, look for other causes of kidney disease.”
Are there any type 1s on here who have sporadically shown “a little protein” but their endo hasn’t made a big deal, since it isn’t consecutive or that bad?
I’m on losartan like some of us, but my endo doesn’t seem concerned
Mine is well beyond a little and none of the doctors I have seen have been worried about it since I am taking blood pressure meds as is usually prescribed for it.
Yep, type 1 for about 24 years or so. Though my guess is the albuminuria was a latent effect from not taking care of my diabetes for about 17 of those 24 years. I should have listened to my endo when I was a kid I suppose.
If you’re concerned, get urine test strips that check for protein, and see how often you see protein. Occasional positive is fine, frequent may be cause for more testing.
I have had occasional small amounts on dip sticks. Sometimes a 24 hour urine collection has been done, and is a better test of kidney function. T1D 57 years.
I had two urine tests show slightly over the limit over the years.
If you are dehydrated and your urine is concentrated you will get false positives.
I try to drink lots of water before I have any blood or urine tests.
The protein they are looking for comes from blood leaking from broken capillaries in your kidneys.
This doesn’t only happen from uncontrolled sugars but can happen for many different reasons.
Also your kidneys can heal from small amounts of damage.
The problem with diabetes is if you are out of control for long periods the damage to your kidneys is accumulative. And your body can’t get a break to do any kind of healing.
That’s why it’s real important to maintain sugars in range as much as possible and keep down blood pressure too.
I’ve been type1 for 35 years and my kidneys are just fine, but I don’t take that for granted.
To have microalbumin or nephropathy without retinopathy is highly unusual. All one has to do is search “retinopathy precedes nephropathy” to be met with this conclusion via various studies.
I’m still a bit puzzled but can live with some weird past test blips I suppose
You say you don’t know what the “little” was? Always, always get copies of any lab work done. That way you can look up the amount yourself, you can keep track of any patterns etc. And different doctors have different ideas of what’s okay. Keep copies of everything.
Nowadays a lot of doctors groups do MyChart or something similar where you get every test result online. I love this because I get to see the result before I see my doctor so I can be prepared with any question or answer I might have.
I have spilled a lot over the years. I exercise daily, I never miss, it’s also my job. I teach yoga and Pilates daily and walk on the treadmill. For this reason I usually always show some spilling into my urine. I am told there is no damage but not before a doctor went ahead and straight up told me you have kidney damage at the age of 23 (I’m not 43). This really messed with my head. For years like decades I was afraid of kidney damage, to the point I was afraid of proteins cause it would tax my kidneys. I’d say is cause a sever eating disorder and was barely getting 20 grams a protein a day.
I feel your pain and frustration with this. I have a urologist do a urine test at 4 points during a day and documented when I did activity in relation to the sample. He looked at the fluctuations and saw the levels rise and clear. I was told my kidney’s were fine. Just this year I changed everything and starting eating proper amounts of protein and physically feel different. I felt awful for years eating improperly. It’s such an unclear thing. I should also say my a1c is 4.9 perfect levels and still it lingers like a dark cloud.
Thank you for this wonderful reply! I understand you in a way that few others (but maybe quite a few on here) can! You are not alone and I am glad you have found a bit more inner peace with the situation.
Uuugh. I can’t tell you how many people have suggested I have an eating disorder because of the way I eat.
Over the past year I’ve been cutting down fat and animal protein. But I’m also avoiding vegetable oil and avocado and nuts. I try to avoid processed food completely.
Even people who know me think it’s odd.
Even I think it’s odd that I eat the way I do, but the fear of kidney disease and diabetic complications kinda leads the practice.
I often wonder how I would eat if I wasn’t type1.
When I was a teen I would skip meals, and gorge myself randomly. Never gain an ounce of weight.
I never controlled my eating at all till my diagnosis.
Of course I don’t know if I would have found my love for roasted veggies and soy protein and a million different beans.
Oat milk in my coffee. Yea it’s good too
I eat a low fat vegan diet because it is extremely healthy. It is similar to the Mediterranean which is considered by many to be the healthiest way one can etc.
I don’t get teased about the way I eat.
@Ali4@Christoph I was diagnosed with kidney disease 25 years ago. At that point, I’d been a reasonably well-controlled T1D for 23 years. The diagnosis came following spontaneous bleeds in both my eyes, which unsurprisingly was PDR.
I presented with proteinuria aka albuminuria, as well as hypertension. Since that time I was taking 3 or 4 different meds to lower elevated BP, at least up until about 5 years ago when a change in diet mysteriously cleared up all my hypertension.
The only med I take now for kidneys is losartan, which is an ARB used more to prevent further kidney damage.
While my level of proteinuria hasn’t changed much in 25 years, my kidney function has been on a slow decline (rising creatinine levels aka falling GFR.). While I’m on the threshold of stage 3 kidney failure, that’s actually considered only mild to moderate damage. I don’t lose sleep over it.
Like you @Ali4, for much of the past couple of decades, I’ve had an eating disorder, also limiting my intake of protein and salt. I’m curious as to how much protein you eat now? I limit myself to about 50 grams - I weigh 65 kg.
Yes, I’ve had that once, probably due to exercise before the test. Since then I’ve made sure not to exercise before blood/urine tests and haven’t had abnormal results since.
