Don't know what's going on...

[badKid28]

Hi There

I'm assuming I have Kidney disease - I'm a type 1 Diabetic with decent control (A1C in the 6's - not perfect but I try). Non smoker, don't drink, etc. 15 years with Type 1 Diabetes now. I was also born with Aortic stenosis which has been stable. Blood pressure is ok - taking Altace for it but it's usually between 120/70 to 135/85.

Labs have always been normal until recently - last lab, normal levels of albunuria (under 17 mg/L). Current lab - full blown Proteinuria! ACR of 422 mg/mmol which translates to roughly 4,500 mg of albumin excreted per day!

Serum albumin down below normal levels, normal being a reading above 35 but mine is now 29.

I have had swelling in my legs as well - most days just a bit around my ankles but some days swelling in my knees and mid thigh.

Otherwise - labs are normal. GFR is 102. Creatinine, sodium and potassium are normal. Cholesterol is ok but LDL is higher than last panel -now at 3.2 previously 2.4 (I'm on lipitor)

Doc doesn't seem concerned but I am!

I'm 36 years old.

What can I expect from this?

[dac0214]

A GFR of 102 puts you squarely in the "does NOT have kidney disease" category. Talk to your doctor.

[DebbyRig]

The reason why the doctor is not concerned is that you DO NOT have kidney disease. You can have swelling for other reasons. Protein leakage also. Talk to your doctor and tell him you need to find out why the protein is leaking. You don't want it to turn into kidney disease. For the swelling well maybe a low sodium diet. Give up the salt. My husband is diabetic and has swelling in his legs off and on. Again talk to your doctor and get answers.

[badKid28]

Talked to my doc - he missed the ACR and now agrees this is serious and thinks it might be nephrotic syndrome - 24 hour urine test ordered and new blood panel and referral to nephrologist.

[Jagb1992]

Well, diabetes is the leading cause of chronic kidney disease (CKD), but you can have CKD without diabetes and vice versa. You should be referred to a nephrologist (kidney doctor) and see what the nephrologist examines, to see if you have CKD or not. I personally have no diabetes and am at stage 3 CKD with 43 GFR (stage 3 CKD is 30 to 59 in GFR). I didn't know there was a GFR above 100, though. I thought GFR was compatible with kidney function, like 73 GFR being 73 percent kidney function. Proteinuria means CKD is present, but it may not always be proteinuria causing CKD - it can cause another disease too. You can have proteinuria but have a good GFR with perfect kidney function. You can just manage your diabetes. If you are discovered CKD, though, you should also be managing that. But there are many causes of both CKD and diabetes, so your doctor should tell you what this means.

[dac0214]

Unusual conditions like the original poster seems to have is a good example of why you should never ask for medical advice from randos on the internet....

[badKid28]

Unusual conditions like the original poster seems to have is a good example of why you should never ask for medical advice from randos on the internet....

Assuming it is nephrotic syndrome - it's fairly rare at about 3 in 100000 adults getting diagnosed.

I was wondering if anyone else here had a similar experience - my concern is that this progresses and my kidneys decline over time.

Even now with mostly normal kidney function I find I am really tired - I could sleep 18 hours a day if I didn't have to work and I'm finding it hard to walk across a parking lot - at 36 this is unnerving - I can barely walk father than my 96 year old grandmother.

I'm guessing it's the proteinuria that is making me tired too - my muscles aren't getting everything they need? Last blood work didn't indicate anemia.

Hoping to see the specialist soon for more answers.

[Lin1263]

I have a G.F.R. at my last test one year ago of 68 and was told I do not have kidney disease but at that time I had very high potassium levels and low Iron. I have lowered my potassium intake and added Iron supplements. I also have low blood pressure 75/55 sometimes lower and was told to add salt to raise it. I will get retested in one week at a clinic so I can confirm my results.My Dr. will not test me. I use the Davita diet but not their menu plans as they are high calorie. I eat 1500 calories a day and use their various recipe sections to plan my menu for a week and every 2nd day I try to add 2 days to it. I go to their shopping list weekly to do my planning for my grocery's. He will not refer me to a specialist of any kind.