Question for diabetics or anyone who knows ... - Kidney Disease

Kidney Disease

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Question for diabetics or anyone who knows the answer

jodaer profile image
33 Replies

I met with my new endocrinologist yesterday for the 1st time. She told me that the fructosamine test is the better test, over A1C, to check for blood sugars IF you also have CKD. Which I do. Has anyone heard of this test or have taken it? I don't remember seeing anything about it before. During research all I could find is that it shows blood sugars over a 2–3-week period instead of the 3-month period for the A1C.

Also, I've been on metformin for about 20 years. She has suggested glyburide or glimepiride as a replacement. She said Medicare won't pay for brand names, but I don't think she understands that I don't have a Medicare drug plan. My insurance will pay for farxiga but I've tried that and don't like the way it makes me feel.

Thanks for listening..

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33 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

HI Jodaer, Never heard of that test, but that's interesting. What did you feel on Farxiga? My husband is on it and doing really well.

jodaer profile image
jodaer in reply toBassetmommer

I got very constipated and had leg pains. Plus, the high-risk side effects scared me for reasons that I won't go into as it would be way too much TMI.

darkstar1974 profile image
darkstar1974

I just recently had the same test added. My A1C was 5.1 but the endo said it's not accurate because of CKD and it's affect on red blood cell production.

I don't recall it off hand but if you do a search there is a formula for converting the result to the equivalent A1C. My converted fructosamine result was 5.6 A1C.

My finger stick tests for a similar time frame were closer to 5.3.

I could not be catching some higher reading after eating perhaps.

Looking at some articles and studies regarding fructosamine it is best to do both tests as both can be somewhat flawed with one has both DM1 or 2 + CKD.

Best thing to do is keep the blood sugars in the non-diabetic normal range. I strive for 80-120.

Darlenia profile image
Darlenia in reply todarkstar1974

Appreciate your reply. It helps fills in the picture for me. Diabetes took out my hubby's kidneys. He managed to eliminate all meds for it during dialysis. But the drugs used for his transplant brought it all back. So this info is very useful. We don't want this new kidney also taken out by diabetes. Many thanks!

darkstar1974 profile image
darkstar1974 in reply toDarlenia

Happy to provide some useful info and happy for your husband's new kidney.

All we can do is the best we can. The main difference between diabetics and non-diabetics is high blood sugar. Strive to keep it as close to normal as possible and the damages caused should be limited.

Darlenia profile image
Darlenia in reply todarkstar1974

Yes. A warning to the wise for sure. We've experienced the dark side of it.

darkstar1974 profile image
darkstar1974 in reply toDarlenia

Indeed. Now we know and can do something about it.

jodaer profile image
jodaer in reply todarkstar1974

Thanks, Darkstar... nice to know someone else knows about this. I am getting both tests at once. My last A1C was 6 but that was last November. Since then I've relocatd and my eating has rather gone to heck. I'm a bit nervous about the tests but will see how I am.

darkstar1974 profile image
darkstar1974 in reply tojodaer

You're welcome. I'm always nervous when going in for tests even when I have a decent idea what the result will be.

My GFR 6 months ago was 47 and I for some reason convinced myself it would be below 40 this time around. The result came back at 57.

I've been fairly solid with my A1C. 5.4 for the past 2 years, 5.5, 5.7, 6.0, 5.5 were the previous before those.

What has worked for me is - testing often, especially when eating. Knowing what foods cause spikes helps you avoid/replace them. Eat to your meter.

Exercise - doesn't have to be crazy workouts but it does wonders to keep insulin sensitivity up.

Diabetes is effectively a math experiment with your body. Like the book title says - Think Like a Pancreas. In an equation large inputs into the variables yield large and differing results. More carbs can cause larger insulin needs/response and with insulin resistance higher blood sugars. Small inputs yield smaller variances.

Discuss introducing insulin with your Endo. Insulin is a tool, not a failure. With the right combination of diet, exercise, basal insulin + small amounts with food you might yield better results than with the pills.

Perhaps too much info/advice - apologies if so.

The main difference between diabetics and non-diabetics is high blood sugar. Strive to keep it as close to normal as possible and the damages caused should be limited.

Here's the conversion equation for the fructosamine - HbA1c = 0.017 X fructosamine level (µmol/L) + 1.61

Good luck on your A1C, and other tests.

Darlenia profile image
Darlenia in reply todarkstar1974

Amen to all what you wrote. Folks, the dialysis centers are filled with diabetics who viewed their condition casually. Consider insulin too - it's the gold standard for treatment but often not brought up because of patient resistance. Please, please, please heed Darkstar's advice, it will save you from a world of hurt.

darkstar1974 profile image
darkstar1974 in reply toDarlenia

Thanks Darlenia - it took me a while of seeking answers to find the ones that worked for and helped me. They certainly weren't coming from the medical folks as they just follow the guidelines for numerous reasons.

OK for a diabetic really shouldn't be the advice being given. We need to strive for as close to normal as possible otherwise those dialysis centers will remain full along with all the other complications that can/will occur.

It can be done, but it is extremely difficult given all the factors surrounding food in our modern life. The emotional connections to food alone are a massive obstacle to overcome.

Good luck to all.

Darlenia profile image
Darlenia in reply todarkstar1974

Eh. Diabetes is treated so casually - like it's a common cold or something like that. It fuels the dialysis centers and the health establishment at large. It's a killer. It's definitely on each one of us to take charge of it. Thanks.

darkstar1974 profile image
darkstar1974 in reply toDarlenia

Absolutely. When will there be a cure? When the profits from a cure exceed the profits of insulin, test strips, CGM, dialysis, etc. It ain't gonna happen.

Darlenia profile image
Darlenia in reply todarkstar1974

Interestingly, a glucose binder molecule was developed by the British in 2018 to neutralize diabetes. Maybe something will come from that direction. But it's very slow going and I sincerely feel that there isn't much interest to really fix the problem. It's truly on each one of us to take charge of our own health in all ways possible.

darkstar1974 profile image
darkstar1974 in reply toDarlenia

I will need to read up on that one as I've never heard of it.

Check out the documentary The Human Trial.

They're able to transplant functional stem cell derived beta cells to restore insulin and glucagon function.

We're just 5 year away right?

Darlenia profile image
Darlenia in reply todarkstar1974

I'm glad you brought that up. Should you, God forbid, ever need a kidney transplant you might want to bring up receiving a pancreatic islet transplant at the same time as the kidney transplant since you're a T2D. For T1D, they often transplant both the pancreas and kidney but not for T2Ds since their pancreas is still functioning somewhat. Maybe they'd be more approving of an islet transfer. I totally forgot to discuss that option at the time of my hubby's transplant. I'm pretty sure it would be turned down - seems to be only T1Ds getting those. But still nothing ventured, nothing gained!

darkstar1974 profile image
darkstar1974 in reply toDarlenia

Thank you for that info. My pancreas makes virtually no insulin so I am treated as T1 even having been diagnosed in my 30's.

I had read about the tandem transplant previously and while I strive to never drop below where I'm currently at it is good to know that it is a possibility to have both done should it be necessary.

Sometimes I feel like anytime my BG goes over 110 or my blood pressure is over 130/85 range I'm just doing more damage, even if it's small.

jodaer profile image
jodaer in reply todarkstar1974

Thanks for sharing your info. You have great control over the diabetes. Mine isn't as good. I used to do daily walks but have a torn hamstrings and can hardly walk around my apartment for long without pain. I will think about talking insulin with endo, will see what all my tests come back as.

darkstar1974 profile image
darkstar1974 in reply tojodaer

Glad to help in any way I can. I feel like things are just ok with my control at the moment, always trying to get as close to normal as possible.

Sorry to hear about your hamstrings and being in pain. Maybe there are exercises that can be done not involving the legs. Any exercise is better than none.

The following resources may also help:

Think Like a Pancreas book - integrateddiabetes.com/its-...

Dr. Bernstein - youtube.com/c/DrRichardKBer...

Dr. Fung - dietdoctor.com/video/manche...

jodaer profile image
jodaer in reply todarkstar1974

Darkstar and Darlenia, great conversation going there. Totally agree with all you said. I'm seeing an orthro sports medicine doctor Tues to see what all can be done, if anything. I do yoga every morning so that keeps me stretching and strength training. I do what I can.

darkstar1974 profile image
darkstar1974 in reply tojodaer

👍 Keep on keepin' on. Hope your tests go well and your legs feel better.

jodaer profile image
jodaer in reply todarkstar1974

Thanks

darkstar1974 profile image
darkstar1974 in reply tojodaer

Just wanted to add these here because I was reading some things that seemed relevant to the conversation.

*Sarcasm* If you're interested in some light reading *End Sarcasm*

diabetes.medicinematters.co...

onlinelibrary.wiley.com/doi...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

jodaer profile image
jodaer in reply todarkstar1974

Yes, light reading... thanks, I will read..

darkstar1974 profile image
darkstar1974 in reply tojodaer

Some of it is a bit dense and scientific but the abstracts and conclusion sections lay out the findings clearly enough for the layman. What I read was that A1C can be altered by anemia (which is usually present in CKD) but only in more severe cases so it should still be a trust-worthy to view A1C as a good marker of control. In cases of iron deficiency anemia the A1C will trend higher. The Pitfalls in Hemoglobin A1c Measurement article outlines some good info on what can make a false high or false low A1C and good descriptions of the alternatives (fructsomine) and their pros/cons.

jodaer profile image
jodaer in reply todarkstar1974

It is dense.. I will have to read it in the morning as my brain is fried at this time of day. Thanks for info.

Tolmezzo profile image
Tolmezzo

I would really talk your physician, possibly a neurologist, if you are eligible for SGLT2 inibithor

jodaer profile image
jodaer in reply toTolmezzo

neurologist? Did you mean nephrologist? I'm trying to stay away from the sglt2 meds.

Tolmezzo profile image
Tolmezzo in reply tojodaer

Yes sorry. TYPO error. Imagine you have good reason to be against SGLT?

VGC3 profile image
VGC3

Be ware of Glimepiride especially if it's 1 mg. The drug is very potent and can drop your blood sugar like a rock. I was on it for a while and I was taking 2 a day.

jodaer profile image
jodaer

Why change doctors? I see an endo for diabetes, neph for ckd. I checked my blood sugar every day.

jodaer profile image
jodaer

VGC3, thanks. I've seen that, not too sure about that one either. I've been on metformin for a long time, and it has worked well for me but fear that I'm getting to the place where it will do more damage than not.

jodaer profile image
jodaer

Thanks to everyone for their replies. Much appreciated.

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