Pre-diabetic or early diagnosis?

“The reference range of C-peptide is 0.8-3.1 ng/mL (conventional units), or 0.26-1.03 nmol/L (SI). [1]”

Hmmm. Maybe it’s normal then lol. I’m not doctor.

Poor Avery. Those numbers you’re having also concern me. Just to reassure you, he sounds just like my daughter although we’ve never had a post meal spike that high

I forgot to add that his urine was 2+ for ketones as well… been a crazy hectic day.

I’m so sorry your son and you are having to go Thur all this I’m sure it’s got your nerves shot. I still can’t believe no one is listening and taking it serious!!! Your hospital sounds like ours they brush everything off. And they should have checked him he minute he got there not waited around till they foud. The time and the paper work was done. I mean really. Im glad he came back down but that doesn’t explain why he was that high in first place. Maybe try calling his endo or ped I know they haven’t been helpful but a bg of 297 changes the ball game. Or I should say it should! I will continue to pray you get answers. If it were me I would keep a very close eye on his levels and how he is acting that’s way really high.

1 Like

Another piece of advice and I wish I would have known ask for hospital reports of your visit. Labs run test anything. I only say that because my little girl had a bad kidney infection not long before dx. And had our hospital paid any attention to her labs and ketones and symptoms they might have noticed something sooner. (Words of her endo who pulled her records) we have online portal for ours but I also have a copy of all of her medical records for just that reason and if ever needed I can present them. For what it’s worth that’s my thought on that part. Hospital miss things all the time they have he treat them and street then attitude with things they don’t find to “severe” in their eyes. Not saying all hospitals are having but our small town ER tends to do that our closest children’s hospital is Nemours in jacksonville so we use what we have.

1.0 c-peptide is technically normal, but only just barely. It’s near the bottom of the acceptable range. Combined with all the other symptoms, it’s a clear signal that something isn’t working the way it’s supposed to. 297 is a number no one with normally functioning beta cells should ever see. Ever.

It’s ridiculous, infuriating and nuts that you are being put through this by people who get paid to know better. Sending all the positive thoughts I can muster in your direction.

2 Likes

if the cpeptide was 1.0 at the same time his glucose was 124, then it is likely too low.

for a cpeptide of 1.0 to be normal blood sugar should also be low.

Keep monitoring, documenting, and hope you can get in with an endo sooner than later.

Just an update, we took Avery to the Arnold Palmer Children’s hospital endocrinology team yesterday. Dr. Yang said he’s seen Avery’s patterns far to often to dismiss it and coupled with some of his lab numbers and rising A1C (he was 5.6 today), he’s 99.9% positive Avery is indeed a type 1 he’s just in the very early stages. He said he fully expects Avery’s antibody tests to come back positive and when they do he will make the diagnosis official. He said once we see consistent 150+ fasting OR 200+ after meal readings, whichever comes first, is when they’ll start him on basal insulin and adjust it from there. He told me that my husband and I are just so entune with the symptoms of the disease and the behavior/health of our children that we caught it early and he’s surprised we’ve been dismissed by so many. He also said his c-peptide, while technically normal (range was 1.0-4.0 and Avery was 1.0) was on the low end and he does have at least 50% pancreatic function which is why he gets normals and high it will slowly but surely start to give. They gave us a new Freestyle and want me to download his readings to them every 5 days.

8 Likes

Yay! :sunglasses:

Glad that you found a doctor who understands what is going on.

This is something you might be interested in and it also contains a couple of links for other discussions of the stages of Type 1 diabetes:

1 Like

I would agree that “presymptomatic” is a whole lot better then “pre-diabetic” when referring to T1.

I flatly do not believe in the concept of “pre-diabetic” as it refers to T1.

2 Likes

I don’t believe in it, period. “Pre-diabetic” is in the same category as “a little bit pregnant”. Either your body can regulate its blood sugar without outside help, or it can’t. You either have diabetes or you don’t. You might have an extremely early or extremely mild case, but that’s not the same thing.

1 Like

My thinking is somewhat different in terms of T1.
(I don’t know enough about T2 to speculate.)

With T1 (my opinion) is it does not have to do with ability to regulate blood sugar or not. Rather at the point in which the immune system STARTS to attack the pancreas beta cells then you are T1. Whether this impacts blood sugar regulation or not and whether the blood tests detect the autoimmune attack or not.

I think that the idea of presymptomatic emphasizes the idea that Type 1 starts many months/years ahead of diagnosis. Lots of people say that I got the flu and it turned into Type 1. In most cases the flu was what pushed one into symptomatic. The die was cast long before that. Of course when you have infants and toddlers diagnosed, everything moved a lot faster…

I just like the idea that there is a “pre-symptomatic” classification because (and we’ve run in to this recently with our own providers) too many people and physicians are still under the impression that diabetes is a “sudden onset” illness and does not happen over a course of prolonged time but rather over a matter of days. That’s why one of the pediatricians in the practice we go to matter of factly said Avery definitely wasn’t a diabetic.

2 Likes

Won’t you be satisfied to rub it in their noses. And what I mean by that is they deserve to learn from this experience and not discount your concerns!!

1 Like

Don’t be so sure they’ll get the point. I had an appointment with an Endocrinologist this morning (only one in the northern part of my state) after a six month wait and a two hour drive. She looked at my labwork, and said “have you ever been diagnosed with diabetes?” She was not just skeptical of my positive antibody test, she was skeptical about whether I’m even a diabetic. Despite the family history of autoimmune disorders and Type 1, despite my own history (diagnosed while fit, at 40, with a mild but sudden onset of symptoms). She blew me off and suggested I would do just fine consulting with my family physician in the future.

My point being…sometimes they just don’t care or just don’t get it.

I never went back to the Ped who miserably failed in what should have been a trivially easy diagnosis of classic T1 symptoms.

1 Like

Have Avery’s antibody results come back yet?

My 12 year old’s have, and praise God they were totally negative. While I know this doesn’t mean she’s all clear for good I can at least say she’s clear for now. The blood sugars have been blamed on puberty :grimacing:

That’s so weird… puberty… I totally don’t remember dealing with any blood sugar issues during puberty but I am not a physician either so… still weird to me. And no, I haven’t gotten then yet, it was 2 weeks yesterday so I expected to but I haven’t heard. I may call the dr to see if they have them, but last time his labs came in I got an email that they were available to download in his patient portal so I assumed it would be like that again.

Haven’t posted in a while… finally got Avery’s test results and that was only after our pediatrician dug through their system to find them. She printed then out for us but I have no reference range or any info other than the numbers on the sheet. Even the pediatrician was no help. Maybe you guys can be. so here’s the results
C-peptide L1.0
Fructosamine Lvl *251
GAD *<5.0
Islet Cell IgG *1:4

So… anyone have any insight?