Hi everyone, after type 1 diabetes for 20 years and am finally looking at my first real complication of diabetes. I am being evaluated for nephropathy and had a few questions. I just switched to a new endocrinologist and she wanted to do a complete physical as I was thinking I might have a celiac issue, but for now that’s taken second base. I have been seeing my old endocrinologist for 3 years, every 4 months, and thought everything was okay other than HBP due to years of diabetes.

I did a urine sample at my new endocrinologist’s office and she called me personally to discuss my results, which, is never a good sign! Anyways, I have an extremely large amount of creatinine and protein in my urine, over 800 mg/dl and 300mg, respectively. I am doing a 24 hour urine collection to determine the extent of my issue. I have not ever had an unusual result prior to this other than trace/small amounts of proteins for over 2 years.

I am the daughter of a type 1 that died from end stage renal failure so I’m a little, well, a lot nervous about this entire process. My endocrinologist is demanding all my tests to be done as soon as possible and she’s trying not to worry me, but I noticed the notes of concern while she was going over everything that I needed to do.

I’m just wondering if there’s anyone here that’s dealt with nephropathy. All of my diabetic friends have not and I’m just trying not to freak out.

Thanks for any insight you all might be able to pass on!


I’m sorry to hear about this. And I don’t really have anything to contribute to this topic but i’m curious. How have your a1cs been? I always wonder if there is really a connection between complications and a1cs or if its genetic or what.

Elizabeth - I’m sorry to read about your kidney concerns. I don’t have any direct experience to offer you but I want you to know that you are not alone. I wish you the best. Learn all you can about your change in health status. In the end, your attitude will mean everything. I will be thinking about you! - Terry

My current a1c is 7.2… they’re usually in the high 6’s mid 7’s with the occasional 8, but that’s usually when I’ve been sick.

=O those are how mine are. Nevertheless definately keep us posted. Nephropathy is treatable =]

This is always hard news. Usually, kidney failure comes on slowly over time. I know that when I tested after hard exercise, I blew protein on the urine test. Keep your spirits up, one test does not make a diagnosis. And you need to remind yourself that you have done a good job on your blood sugars, your mother lived in a different and much harder time and your life’s journey is going to be different and brighter.

I have no insights to share - a big hug from me is all I can offer right now.

I’m sad to hear this but Glad that you got another Endo. Hopefully she has Better news/treatment. Let us know how it goes. Me too - (((Hugs))) and a prayer…

Thanks everyone! I start my 24-hour collection tomorrow. It should be a great experience! I pretty much am living on hopes and prayers, wishing I could fast-forward the next week. I will let you all know as soon as I know!

i think you should remove the ‘worst case’ scenario from your mind.

indeed kidney effects usually occur slowly over time, so time should still be on your side,

and i doubt that you have overly major problems at this time

understand that with some drugs (ACE-inhibitors; which are also used for high blood pressure) and possibly a slight dietary modification (only if you really have some kidney problems - where you may need to watch protein intake), you can surely get on top of this

my only real concern is that your previous endo may have played down your results (which may be indicative of the start of some slight problems)

hopefully your new endo will get your house in order

this podcast from diabetes powershow has some helpful information

about the speaker

…David Makil is a Clinical Assistant Professor withwith the University of Nevada School of Medicine. He also holds the same position with the Touro University School of Osteopathic Medicine.

He received his medical degree from Dartmouth Medical School in 1993, and moved on to complete his residency and fellowship in Nephrology at the University of New Mexico in 1998. He has been with Kantor Nephrology Consultants since then.

He joins us today as a member of the HealthInsight Chronic Kidney Disease Task Force, created in October 2008 to confront the growing issue of CKD in the community. As the first Native American kidney specialist in this country, he brings a unique voice to the CKD effort; he has focused on expanding the message of CKD and Diabetes in minority communities as a result.

Thanks Michael, I’m trying to remove the worst case scenario from my mind, but it’s not easy! I have been on ACE-inhibitors for about 6 years due to HBP. I am getting my MS in Clinical Nutrition so I’ve got a great diet to begin with. I just hope, fingers crossed, that everything comes back great and it’s just stage 1 of CKD instead of what my endo’s fearing. i won’t know anything for a few more days, but I’m hoping for the best!

Thanks again!


Hey Elizabeth! Well I just wanted to say that “Thought is the Law of Attraction.” If you have confidence and hope everything will be alright :slight_smile: All good wishes are sent to you from me

Hey Elizabeth.

I have been type 1 for over 26 years and kidney trouble for about 7 years. Don’t freak out. It comes on slowly, so if sodium doesn’t make you swell a lot, it will be a while before you are in bad shape, assuming you take care of yourself…except for the fact that you have to collect your urine and refrigerate it every 6 to 12 months for the rest of your life. = )

The most important tip I have for you is the lower my A1c, the better my kidney function. You have to keep it below 7, if you can. Also, if you are a diet pepsi drinker,like I was, get rid of the soda with phosphoric acid. If I drink it, my kidneys start hating me again.

If you have questions, send me a message, adn I will do my best to help ya.

Hey so is the fact that even the smallest amount of salt makes me blow up like a balloon bad? I currently have the calves, ankles, and feet of a person that would be like 750 pounds! I swear it’s bad! It’s been like this for about 2 years…

I’m interested in following your progress, because I had acute kidney failure during a coma in September and now I’m having foamy urine, which may be a sign of protein loss. I don’t have an appointment until the first week of March, so I’m worrying about it.
I do know there are ways to slow the progress of kidney disease – you have to work in close relationship with a nephrologist and a dietitian, but I’m really hoping they can help you prolong the function of your kidneys as long as possible!

Natalie, I will keep you posted for sure. Yes, foamy urine is a sign of protein loss. Have you asked to be put on the list for a sooner appointment when someone cancels? I’m working on my MS in Clinical Nutrition so I’ve got the nutrition part down, but I’m currently looking for a nephrologist as I know it’s important to have a specialist when dealing with this!

Wishing you the best!


Not to get you too worried, but this is something that does not give any symptoms, that you can ‘see.’ It’s caught just like your doctor did. However, I got the news right after a check from my doctor, that I was a Class III Chronic Kidney Failure. I wasn’t happy to hear about that, especially after I had looked it up in a medical volume.
However, there are a lot of people out there that are willing to help you, that know what is going on. AND, if it EVENTUALLY turns out that dialysis is necessary, they have some new ways to do it, so that you can have it done at home, if you live far away from a dialysis unit.
I know I don’t sound very hopeful. But I AM hoping that in your case, they caught it in time, that they can turn things around for you. God doesn’t give us any challenges that we can’t handle, with His help.
Take care, Elizabeth.
Chaplain ET

Baby Lee - I just checked my can of Coke Zero - the 3rd ingredient is phosphoric acid. I didn’t know this would irritate our kidneys - but then it’s an acid.

Elizabeth - hoping that everything turns out alright - just think positive thoughts! Glad you’ve got another endo - I’m doing the same thing in a few months - changing endo’s after 20 years. The new one works in research at a major hospital here - with T1 children - and in the insulin pump field.

Hi Elizabeth, bless your sweet little heart, and kidneys too. Try to think this way, if it is a problem it was caught early.
And I do agree, if you drink soda Sweetie get that gone, soon! it is hard on the kidneys, I was told that quite a few yrs ago. I learned alot of whats really in processed foods, and drinks. And our Kidneys are precious, as you know. I am so sorry you lost your Mom to Diabetes. Thats so sad. I lost my Grandmother, she wouldn’t listen to me. All the time as I take care of myself, I look to the sky and say Grandma I am doing this right, I hope you are proud of me:) I know she is:)

I had a Really scary time at age 19, I swelled up and looked like a balloon. I was spilling protein and I landed in the hospital, they said my Kidneys were very bad. I had IV’s in both arms, and I was Just plain Nieve and confused. I had no one. I took charge of my Diabetes as well as I knew how, which back then there wasn’t much shared info, but I got sick again. The meds caused a problem in my digestive tract. Insulin back then was Pig or Cow, made me sick as a Pig, I guess, Hehe… I had a colon test, my Liver got hardened. But as I did before I got better, it took 1 yr. And as yrs went on, I had on and off problems, but the meds changed. They told me I wouldn’t live to be 40 yrs old. Well Sweetie I am 54. I just live each day with the hopes to learn more and listen to smart people, and get as educated as I can. I do think the more we understand Diabetes we can take better care of ourselves.

I don’t know if you mind, but I will add you in my Prayers. Don’t worry, sometimes we worry and it ends up to be nothing or something that is easy resolved:)

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Debbie, thank you so very much. I’m sorry to hear about your prior issues with things! I’m really hoping that this is just a scare and that nothing really comes out of it. I’m still waiting to hear back from my endocrinologist… hopefully, some word comes tomorrow!

Chaplain, I’m sorry to hear of your CKF! I’m with you, if it is something I’m hoping it was caught early! However, my endo’s closing words to me when I talked to her on the phone was dialysis sucks and that we need to figure out what branch of Emory University Hospital would be the best for a nephrologist. I guess all I can say is how glad I am that I’m surrounded by some of the best doctors around!