You should request a copy of all test results.
There are for your future reference as well. Just telling you results are fine, is not good enough, IMHO.
Iām sorry youāre having to go through this.
There are a few studies that shown that A1c is not a reliable tool for diagnosing T1 in children & adolescents. I would insist on the antibodies. C-peptide may or may be useful at this point.
Quest is perfectly capable of doing all of the tests for T1, & thereās absolutely no reason for you not to take the orders to any lab you choose. Thatās not up to the endo or any other Dr. Your insurance provider would likely be grateful if you didnāt use a lab connected to a hospital. Independent labs usually charge much less. We have only used independent labs for the past 5 yrs for exactly that reason. We pay co-insurance at hospital connected labs. Independents cost us nothing.
Quest & LabCorp both have patient portals of their own. You register in their websites & results are uploaded to your account shortly after your Dr receives the results.
In the meantime, itās good that youāre monitoring. Bear in mind that ketone testing first thing in the morning is pretty much a waste of time. Itās completely normal for anyone to spill ketones after fasting overnight.
I agree, any time Iāve or my husband have ever had labs done we did them at quest and received copies of our results. I have already put a call in to our pediatrician because she received a copy to speak with her about them, possibly going to a different endo and to get a copy for our personal records from them. I am hoping to make progress on all this today.
Thank you everyone for your words of wisdom.and advice. I am learning so much!
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Ok, for anyone following our case, I spoke with our pediatrician this morning and she looked over Averyās labs from last Wednesday and said they were kind of inconclusive because of the A1C being 5.4 so a little high but within normal range not even high enough to label him pre-diabetic but he may not have been having issues long enough to effect it much and his fasting glucose levels are higher than average but again not high enough on a diagnostic value do there wasnāt much they could do at this point except wait for the rest of the tests. The c-peptide results ran on Wednesday still arenāt in and my husband is calling the endo to rush the orders for the antibody tests and the glucose tolerance test. In the meantime she told us to just keep an eye on him, we know what to look out for and if we feel anything is wrong or have any questions to call her whenever.
Yesterday we tested his morning (fasting) bg and after lunch just for our own records. Morning was 101 and after lunch was 93 so he was fine yesterday. Today, his morning was 106. Maybe this is all in our heads. Then again maybe like some others have suggested itās just early stages and his pancreas is working most of the time and just having little sputters of issues. Only the tests will be able to tell us for sure so the sooner we can get those the better.
Momof_35 - I completely know how you feel. I recently posted on here regarding this exact scenario with my 4 year old son. Fasting blood sugars, 98, 99, 111. Random blood sugars 179, 186, 235. His normal doctor was concerned and did a tolerance test. His fasting sugar that day was 99. It took him 30 min to drink the glucose drink because it was making his stomach hurt. So the test was kind of skewed to start with since it took so long to get the drink down. 1 hour after he finished the drink his glucose was 154. He was so worked up from the second blood draw he ended up vomiting so they didnāt draw at the 2 hour mark. So like your son my sonās numbers are ānormalā but high normal. We did an A1C and a C Peptide. A1C was 5.7 and the cpeptide was 1.2(reference range 1.1 to 4.4) with a fasting glucose of 111. So I have a 4 year old who is by no means overweight presenting like a pre diabetic. We had a referal sent to the Pediatric Endo near us (2 hours away - which is nothing when it comes to your kids health. As Iām sure you would weāll do whatever driving we have to to figure this out.) We are waiting to hear back from the Endo about an appointment. In the meantime I keep a close eye on my son. I randomly check his sugars, usually fasting, because well, heās 4 and eats constantly so itās pretty hard to catch a true before meal and 2 hours after meal number because heāll eat and then snack in that 2 hours. Anyway, with all that being said. I COMPLETELY understand what your going through and where your coming from. I, too wonder if Iām just over reacting and over thinking it because Iāll catch those random high numbers one day and the next day his numbers will be normal. I do have to say I have never once seen a number below 90 with my son. So please know Iām out here too. In the same boat with the same worries as you. Just as an example my son just fell asleep after eating some mixed berries and popcorn he started eating about 30 min ago so because heās asleep (and checking him doesnāt wake him up) I checked him. Heās at 168. So frustrating just not knowing. Iām sorry your having to go through the worry as well.
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It sucks doesnāt it? I hope you get answers soon. Itās frustrating when we at home see something that doesnāt present when we take them to the dr. Luckily our pediatrician got us in with an endo quickly and we are making headway on his tests. He had a c-peptide done, no results yet and the rest of the tests, for antibodies and such, are scheduled for next Thursday so weāll know one way or another in a couple weeks. I just wish there was more we could do but like you I am checking him periodically to keep a log book, thatās all I have now. Itās silly to say try not to worry, because as parents thatās what we do so I will say if you need to talk or vent with someone who is in the same boat, pm me!
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Regardless of the C-Peptide or the Glucose Tolerance test or the A1C or the fasting BGā¦
Make sure you (both) get the full suite of Diabetes/Insulin related antibody tests.
ZnT8
GAD-65
IA-2
IAA
Donāt get talked into less. You want all those tests. Really not that much to ask of a Doc. What the results might mean or if they are not conclusive? Deal with that later. Step one is get the tests and make sure you get a copy of the results which NEED to include the reference range from the lab that did the work.
Tim35 - I have both my kids set up to have blood drawn for Trialnet on July 10th. I, of course, hope to have better answers on my son prior to getting the results from Trialnet so your list of tests is great! Thank you.
Bear in mind that Trialnet says you will get the results in 4 to 6 weeks.
If you have your Doc (Ped or Endo) order the tests, they should be overnight or worst case couple days.
Personally I find the Trialnet marketing campaign to be misleading. They advertise:
āTrialNet offers a unique screening test that can identify up to five autoantibodies that may show up years before symptoms appearā
I am a little unclear exactly what antibody they are testing for that they seem to claim nobody else is aware of or capable of testing for.
The following is an opinion:
You need a new doctor or set of doctors, for you and your kids. This is something that many of us have discovered over the years: there is no reason in this day and age to put up with a doctor that isnāt respectful, helpful, and prompt.
The doctor that diagnosed me inadvertently set me on a course of action that probably would have killed me, because he didnāt understand diabetes. He wanted me to eat more carbs. He wanted me to not take medication. He was convinced I could only possibly be Type 2 because I was 40 when diagnosed. He wanted me to quit running, cycling, lifting weights, and swimming, and do only some moderate walking after meals.
If Iād followed his advice, my BGs would have gotten worse. I fired him, got two new doctors (one a Type 2 specialist and a new family doctor to boot), and both of them realized something was goofy. They ordered more testing, determined (independently) that I wasnāt Type 2, and eventually got me in the pipeline to see an endocrinologist. I see the endo in two weeks for the first time, and what Iāve learned in the last year is this: if she doesnāt treat me with respect as an adult who is competent to understand and make medical decisions, I will find a new endocrinologist. In my neck of the woods, that might take another 6 months (I hope not), but Iāll do it.
In your case, dealing with a child, there is no reason to put up with a disrespectful and possibly incompetent doctor. Your childās health is far too important to faf about with a snooty doctor.
Sorry if it seems Iām annoyed at your pediatric endo 
I dealt with a smarmy accountant this morning that screwed up my taxes two years running, and Iāve about had it with professionalsā¦
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Iām wondering if they test for IA-2 and IA-2B (beta)? A full suite of autoantibody tests for Type 1 would currently include six tests: ZnT8; GAD-65; GAD-67; IA-2; IA-2B; and IAA. As far as I know, itās not common to test for GAD-67 (I think both 65 and 67 tests will detect high amounts of GAD antibodies, so only 1 is necessary). There are, according to the literature, some Type 1s who test positive for IA-2B but not IA-2. Given that Trialnet is primarily a research project, it wouldnāt surprise me if theyāre using both types of IA testing.
Ok, scratch that, I just found info on the five tests they run:
- GAD-65
- ICA512 (didnāt know this was used anymore, but this is research rather than diagnosticā¦)
- IA-2 (wonder why they arenāt doing the Beta version of this?)
- MIAA (microinsulin autoantibody, a variant of the IAA test)
- ZNT8A
Their interpretation of results is pretty sensible, although Iām going to have to track down one of their statements. If you have relatives with Type 1, thenā¦
-
No positive autoantibodies means you donāt have diabetes, but should likely continue monitoring (especially in children)
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One positive autoantibody means you are predisposed and should monitor for symptoms
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Two positive autoantibodies means you are in what they call āearly stage Type 1,ā which Iād not heard beforeā¦
Ok, Iām going to drop a statement and study here which may answer one of the underlying questions coming up in a few different threads here of late. A 2015 article proposes that there is such a thing as āPresymptomatic Type 1 Diabetes Mellitus,ā and it appears that ADA, JDRF, and other bodies are moving toward accepting the standard. The important bit is that Type 1 is proposed to occur in three stages:
Stage 1: two or more positive autoantibody tests and normoglycemia, with no symptoms.
Stage 2: two or more positive autoantibody tests and impaired glucose metabolism, with no symptoms.
Stage 3: two or more positive autoantibody tests with impaired glucose metabolism and symptoms.
The reason why this is important is because of the way āimpaired glucose metabolismā is defined by the ADA and in the linked article. They use the same standards for diagnosing prediabetes (>100mg/dL or 110mg/dL fasting glucose; >140mg/dL 2 hour OGTT; >200mg/dL random or 30,60,90 OGTT).
What this actually means is that the presence of more than one autoantibody associated with Type 1 diabetes is diagnostic in itself, although the symptoms may take 5 to 10 years to develop. Having bloodwork showing āprediabeticā levels in a child should absolutely not be a reason to not test for autoantibodies. If the comprehensive (five or six tests) come back negative, or only one test is positive, then the child (or adult) should be monitored if they show no symptoms.
Iām glad you all posted and I started digging into this. Itās important to keep up with ever-changing standards of care and diagnostic criteria.
Hear, hear. +1. Right on. Etc.
When my last doc started winding down to retirement, I conducted an organized search for a new one. I made appointments with each prospect to just sit down and talk, so I could determine whether the doc and I were on the same wavelength and could work together. My new doc actually said, without prompting, āI donāt know everything.ā Heās now my GP. We both acknowledge that he knows more about medicine than I ever will, and that I know more about my diabetes. He treats me like a team member, not a wayward child or employee.
There is no justification, and no reason, to settle for less.
$0.02
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Thank you for the information and research. We go for the OGTT and the antibody tests next week and I know weāll get answers after. And since the endo we have now has ordered and scheduled those tests we will stick with him until we get the results and then switch after for treatment or monitoring or whatever comes next but again since heās already started the ball rolling weāll keep going with it for the time beingā¦
Itās interesting the information you quotrd in your research, we donāt know if he has antibodies but judging by some of our home bg reading he seems to have impaired glucose, but nit consistently. Sometimes we get fasting number over 110, sometimes not, sometimes we have highs after meals, sometimes not, so again weāre in the wait and see because weāre waiting on the tests. Itās good to know though that if he has antibodies and his wonky numbers itās still within their criteria so we arenāt left with nothing, if that makes sense.
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I completely disagree with the concept of Type 1 āpre-diabetesā. In my opinion, there is no such beast. Either you have Type 1 or you donāt have Type 1. Type 1 defined as the autoimmune system attacking the pancreas. Per my definition.
Once you have Type 1 you could go a long time with your pancreas continuing to produce insulin of various quantities such that your BG may fluctuate and in the beginning appear mostly normal. This will change and it is nothing to be concerned about as it is just the way it is. You educate yourself and learn how to deal with it.
As a Parent this is simply part of the job. You deal with what comes your way.
Oh and the āgenetic testsā that give you a āpercent changeā of being ādisposedā to Type 1 diabetes? My opinion (again) is those are gimmicky that the FDA should not allow to be marketed. Total crap.
Btw - @Momof_35 just so my post is not misunderstood - I completely agree with your current approach. Stick with it.
You might be interested in the scientific paper I linked above. The important bit is that they distinguish presymptomatic Type 1. They define Type 1 as having beta cells under autoimmune attack. Diagnostic criteria for āautoimmune attack on Beta cellsā is the detectable presence of two autoantibodies with or without Type 1 symptoms. It looks like the ADA and JDRF are adopting this standard of diagnosis for Type 1.
Itās an important step, because it gives doctors criteria similar to what you are suggesting: there is not āprediabetesā in Type 1. You have it or you donāt. Importantly, it isnāt diagnosed (officially) by blood glucose levels, presence of ketone bodies, or any other such thing. Diagnostic criteria for Type 1 is based on autoantibody presence. Being Type 1 does not mean (contrary to popular belief) that you are symptomatic, under this definition. You can have ānormalā blood sugars, or even blood sugars approximating what the ADA calls āprediabeticā and still diagnosed as Type 1.
Incidentally, I donāt think āprediabeticā means much in any case. Most researchers consider what the ADA calls āprediabeticā as early stage Type 2. The reason why all this is important is very simple:
If people adopt the āstageā model of Type 1, then in cases like the OPās, a doctor canāt (and shouldnāt) say āyour kid isnāt diabetic because his fasting BG is below 100 mg/dLā or his ketone bodies arenāt high orā¦ whatever many doctors tend to say when they donāt get it. This new, updated diagnostic guideline properly recognizes the underlying autoimmune attack as āthe diseaseā and the associated BG and other symptoms as āthe symptoms of the disease.ā This is a good thing for diabetics.
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I take a broader view. There is no such thing as āpre-diabetesā. Either your body can maintain normal blood sugars unassisted, or it canāt. You have control, or you donāt. Pre-diabetes is many things, but most of all itās a cop-out. āItās only pre-diabetes, no need to worry about it yet. Letās wait until it becomes full blown.ā If ever there was a self-fulfilling prophecy, thatās it.
So Avery has a baseball game tonight. When we got to the field he was saying he didnāt feel good and his stomach hurt, I tested him, he was at 195ā¦ hasnāt had anything to eat since 1 and only water to drink. Hour and a half into the game heās at 135ā¦
Avery #35 (catcher)
That is great that he came down to 135. Not so great that he was at 195. You should put a call in to your Pediatrician TONIGHT. The Ped may want you to bring him to the ER. At least provide the info to the Ped as this sounds a bit different than you mentioned previously. ie - The possibility exists that this is progressing.
BTW - Looks like he is doing a great job as Catcher !!! Looks like this is not his first time in that position. Excellent.
Thanks, yes he loves catching but his favorite position is 1st base.
We tested him about half hour after the 135 and it was 112 so we were happy but we tested him an hour after that, as soon as the game ended and he had jumped back up to 155 still with only.having water and during a gameā¦ I called our dr, she said test him every hour or two the rest of the night and if at any point he hits 200+ to go to the ER