Hello :)

[Rachelj]

My 17 year old son has been type 1 since Dec 2021 . Friday we were told he has been type 2 since May 2023 ! Shocked wasnt the word. He isn't on the tablets yet still treating him as type 1.
Any helpful hints would be great. I feel I'm very stuck at the moment.

 

[Inka]

Welcome @Rachelj 🙂 Can you explain a little more? Are you saying that your son has ‘double diabetes’ (ie Type 1 and Type 2 together) or are you saying he was misdiagnosed?

 

[Inka]

P.S - you can list yourself as a Parent on the forum (unless you have Type 2 yourself?) and just put your own age (or none) in the Age box to avoid confusion.

 

[Rachelj]

Hi no he was diagnosed with type 1 and then had an antibodies test and they (Doc's) are saying he is now type 2.

 

[Inka]

@Rachelj Have they given any indication to him/you as to whether that will change his treatment - ie will he be able to stop insulin? How’s his control? How much insulin is he taking?

 

[Rachelj]

@Rachelj Have they given any indication to him/you as to whether that will change his treatment - ie will he be able to stop insulin? How’s his control? How much insulin is he taking?

they mentioned tablets, he is a full time insulin taker, he injects before every meal and each meal is a different dose, normally unless he eats a bag of sweets he is good he sits really well.

 

[Rachelj]

P.S - you can list yourself as a Parent on the forum (unless you have Type 2 yourself?) and just put your own age (or none) in the Age box to avoid confusion.

could you tell me how i change this please, i dont want to cause confusion, thanks

 

[Inka]

could you tell me how i change this please, i dont want to cause confusion, thanks

Look at the top of this page and click the tab with your name on on the right under the DUK phone number. Then choose Account Details and scroll down to Date of Birth and change, then scroll down to Relationship to Diabetes and tick Parent 🙂

 

[Inka]

they mentioned tablets, he is a full time insulin taker, he injects before every meal and each meal is a different dose, normally unless he eats a bag of sweets he is good he sits really well.

I’m wondering if the tablets will be in addition to the insulin? What insulins does he take and how much of each (choose his average amount for the bolus/meal insulin, or say a range)? I ask because I presume he has some insulin resistance and is on large doses. If he can improve any insulin resistance, that should help. Weight loss (if needed) and keeping active should help too.

As for hints, I think I’d be compiling a list of questions for his doctors. I’d ask what would be happening about his Dexcom and if funding for that will stop at some point; I’d ask about the exact plan for his medication; I’d ask if there was any possibility he could go into ‘remission’ as they call it, etc. You might also want to phone DUK for advice.

 

[Rachelj]

I’m wondering if the tablets will be in addition to the insulin? What insulins does he take and how much of each (choose his average amount for the bolus/meal insulin, or say a range)? I ask because I presume he has some insulin resistance and is on large doses. If he can improve any insulin resistance, that should help. Weight loss (if needed) and keeping active should help too.

As for hints, I think I’d be compiling a list of questions for his doctors. I’d ask what would be happening about his Dexcom and if funding for that will stop at some point; I’d ask about the exact plan for his medication; I’d ask if there was any possibility he could go into ‘remission’ as they call it, etc. You might also want to phone DUK for advice.

Ok so he takes 1.8 for breakfast 1.10 for dinner and 1.6 for tea of nova rapid and then he has Tresiba 28 units per evening. Yes he does make a little bit of insulin himself, well i thought he did and no one has told us otherwise.
I have yet to speak to the doctor as when we were told on Friday we were livid as no one had said anything before, we ended up walking out, I know it wasn't the correct thing to do. so now i have to get another appointment with them,
I am planning on ringing DUK tomorrow when they open. #
I will have lots of questions to ask them

 

[Inka]

Those insulin doses don’t sound dreadfully high @Rachelj It seems like it was just the lack of antibodies that made them say he was Type 2. Did they also test his C Peptide? People with Type 2 often make more than enough insulin (so will have a high C Peptide) but people with Type 1 have a low C Peptide because their insulin-producing cells have been destroyed and so they can only make tiny amounts of insulin.

Do you know why they ordered the antibodies test so long after diagnosis? Were there any signs they mentioned to you that didn’t fit with Type 1?

Finally, do any close relatives have Type 2?

 

[Docb]

Hi @Rachelj. As many on the forum know I am a bit wary of labels like T1 and T2 when it comes to diabetes. OK, a majority fit comfortably into one of those two boxes but there are some on the forum who do not. Maybe your son is one of those.

To me the important thing is that his auto blood glucose control system was not functioning as it should to the point where he was given a T1 diagnosis. Somebody is now questioning that diagnosis and they are trying to work out what treatment regime is best for him. I would not worry about labels and if your son has good blood glucose control then I would go with the flow until they get things sorted.

In the mean time I would be mugging up on diagnosis methods for T1 and T2 so that you can have a sensible conversation with the medics when they have come to their conclusion.

 

[Rachelj]

Those insulin doses don’t sound dreadfully high @Rachelj It seems like it was just the lack of antibodies that made them say he was Type 2. Did they also test his C Peptide? People with Type 2 often make more than enough insulin (so will have a high C Peptide) but people with Type 1 have a low C Peptide because their insulin-producing cells have been destroyed and so they can only make tiny amounts of insulin.

Do you know why they ordered the antibodies test so long after diagnosis? Were there any signs they mentioned to you that didn’t fit with Type 1?

Finally, do any close relatives have Type 2?

I've never heard of C peptide ?! The only reason I can think of is that we changed hospital's so maybe thats the reason for the late testing.
Thats just the thing no one has mentioned anything to us at all.
Diabetes doesn't run in either side of our families at all. Type 1 or Type 2.

 

[Rachelj]

Hi @Rachelj. As many on the forum know I am a bit wary of labels like T1 and T2 when it comes to diabetes. OK, a majority fit comfortably into one of those two boxes but there are some on the forum who do not. Maybe your son is one of those.

To me the important thing is that his auto blood glucose control system was not functioning as it should to the point where he was given a T1 diagnosis. Somebody is now questioning that diagnosis and they are trying to work out what treatment regime is best for him. I would not worry about labels and if your son has good blood glucose control then I would go with the flow until they get things sorted.

In the mean time I would be mugging up on diagnosis methods for T1 and T2 so that you can have a sensible conversation with the medics when they have come to their conclusion.

Thank you for that, I'm not keen on labels either but at this moment in time type 1 and 2 are all I have to go on, Seems we have been "Going with the flow" ( not knowing) for a year, then that makes me question is the insulin harming him, I just dont know what or how to think at the moment.
Trying to figure out more about T2 as we have lived with all the aspects of T1 for nearly 3 years, but form what I gather T2 is exercise and food, and being over weight, my son is 6ft 5 and has huge muscles.

 

[Proud to be erratic]

Thank you for that, I'm not keen on labels either but at this moment in time type 1 and 2 are all I have to go on, Seems we have been "Going with the flow" ( not knowing) for a year, then that makes me question is the insulin harming him, I just dont know what or how to think at the moment.
Trying to figure out more about T2 as we have lived with all the aspects of T1 for nearly 3 years, but form what I gather T2 is exercise and food, and being over weight, my son is 6ft 5 and has huge muscles.

I am far from being a qualified medical person. But if your son, after such a long period of taking insulin (as if T1) without constantly being hypo or struggling to not be hypo .... I would conclude he always needed the insulin and no harm will have been done. Conversely 3 yrs without insulin leaving him excessively hyper can (I think will have) left him with long term damage. Possibly to his vascular system, neurological system and vulnerable to a couple of eye conditions.

Do at least be aware and take reassurance from knowing that there are people who have been diagnosed as T2 and unquestionably do need insulin. My late brother was T2; he lost both legs to uncontrollable sepsis, while only on oral meds. (A simple knock alongside very elevated BG left him in a dreadful place.) His treatment post surgery alternated between insulin dependency and oral meds; it always struck me as strange why one month no insulin and another month it was needed. T2 is not just about exercise and food. It's a complicated mix of different medical circumstances that is aggregated into one "blur" of a simplistic diagnosis of a letter and a number, embracing a huge group of people affected by their elevated blood glucose. Elevated for so many reasons.

I'm really sorry to hear about this distressing, confusing and alarming rediagnosis for your son. Apart from this reaction from me, I am woefully not knowledgeable about the subtleties of what defines T1 and @Inka has, as far as I'm concerned, offered balanced and informed views on how your son might proceed and why.

 

[rebrascora]

Just because your son's antibody test was negative doesn't mean he isn't Type 1. Do you know which antibody test(s) they did and what the results were.

Can you tell us a bit about how he came to be diagnosed in the first place? Was he very ill and perhaps in DKA (Diabetic KetoAcidosis) or were his elevated BG levels found through some other means.... perhaps a blood test for something else?

Diagnosis of Type 1 is not always straight forward by any means and sometimes doing antibody tests years later can mean that the antibodies have subsided since the onset and the patient no longer tests positive, so basing a re-diagnosing purely on a negative antibody test.... especially if only one antibody was checked, is unsafe in my (non medical) opinion.

Your son's insulin doses are not large and would suggest Type1. From what you say he is not significantly overweight, more muscly. Does he do much in the way of sports? If so, that again makes Type 2 less likely. I think a C-peptide test might be useful and you could certainly ask about that. If he has low endogenous insulin production, then that would also indicate Type 1.

In your situation, I would find out which antibody tests were done and what the numerical results were and push for a C-peptide test if it hasn't been done and make sure to ask about specific instruction to prep for the test. Ideally it should be a blood test rather than urine test as the blood test is more reliable and whether it is to be a fasted test (on an empty stomach) or he is to eat food without bolus insulin before the test ie a stimulated test to see how his pancreas responds to high BG levels.

Doctors are not always right and whilst I am not saying this doctor is wrong, I think there is a chance he may be, and I would want to know that everything was done to ensure that a re-diagnosis was correct. Many of us were misdiagnosed as Type 2 to begin with. It is much less common for it to happen the other way around and particularly with someone as young as your son, especially if he doesn't have any apparent Type 2 risk factors.

 

[Rachelj]

Just because your son's antibody test was negative doesn't mean he isn't Type 1. Do you know which antibody test(s) they did and what the results were.

Can you tell us a bit about how he came to be diagnosed in the first place? Was he very ill and perhaps in DKA (Diabetic KetoAcidosis) or were his elevated BG levels found through some other means.... perhaps a blood test for something else?

Diagnosis of Type 1 is not always straight forward by any means and sometimes doing antibody tests years later can mean that the antibodies have subsided since the onset and the patient no longer tests positive, so basing a re-diagnosing purely on a negative antibody test.... especially if only one antibody was checked, is unsafe in my (non medical) opinion.

Your son's insulin doses are not large and would suggest Type1. From what you say he is not significantly overweight, more muscly. Does he do much in the way of sports? If so, that again makes Type 2 less likely. I think a C-peptide test might be useful and you could certainly ask about that. If he has low endogenous insulin production, then that would also indicate Type 1.

In your situation, I would find out which antibody tests were done and what the numerical results were and push for a C-peptide test if it hasn't been done and make sure to ask about specific instruction to prep for the test. Ideally it should be a blood test rather than urine test as the blood test is more reliable and whether it is to be a fasted test (on an empty stomach) or he is to eat food without bolus insulin before the test ie a stimulated test to see how his pancreas responds to high BG levels.

Doctors are not always right and whilst I am not saying this doctor is wrong, I think there is a chance he may be, and I would want to know that everything was done to ensure that a re-diagnosis was correct. Many of us were misdiagnosed as Type 2 to begin with. It is much less common for it to happen the other way around and particularly with someone as young as your son, especially if he doesn't have any apparent Type 2 risk factors.

Thank you, I don't have a clue what antibody(s) test they have done, I do know that all of his bloods test have been fasting. They test his urine every 3 months while at clinic, I never know the results, I am sounding like a parent who doesn't know a lot but I am trying to make my Son abit more dependant.
My son was going to the toilet ALOT before being diagnosed, and his dad has Diabetes Insipidus which is the pituitary Gland. So took him to the Gp and he did his urine and a finger prick, and he was sky high, Sent straight to hospital admitted and they did another blood test and it came back he is T1. the rest is history as they say.
My Son is alot more active of late more than he has ever been, he plays footie and basketball with his mates and he boxes ( we even have the punchbag hanging in the garden !)
I think it would be best for all the test's to be done again to be right, I certainly am not accepting what they are saying now from a year ago, I just want the correct answers from them and no more messing around.

 

[rebrascora]

I think sometimes there are no "correct" answers, just someone's interpretation of the test results. Sometimes a Type 1 diagnosis is quite straight forward and other times it is not so clear. We have a member @Lucyr who has been diagnosed at least 15 years and is insulin dependent and she still doesn't have a definitive diagnosis and like your son, she was relatively young at diagnosis. It can be really frustrating when you don't fit into a clear category and I imagine you must feel a bit like a rug has been pulled out from under your feet to have this about turn on his diagnosis now. I imagine there will be consultants who would look at your son's case and results and still go with the Type 1 diagnosis, so you might want to consider a second opinion. Knowing all the tests that are done and what the results actually are in numerical terms is important and your son is entitled to those results, but at 17 I imagine he is treated as an adult now, so it may be up to him to challenge the re-diagnosis or ask for that information.

I would be very surprised if your son is going to be expected to manage without insulin and I would hope that he will continue to be prescribed a CGM either Libre 2 or Dexcom One if he remains on insulin, which I assume he currently has, so the only major difference would be that he would not qualify for an insulin pump if that was something that he wanted to try in the future, as currently, pumps are not offered to Type 2 diabetics.

I think the key thing with diabetes is that knowledge is power and it is important to get the results of tests done so that you know what the situation is or can do some research and find out. There are a few members here who are very knowledgeable about all the different tests and what the results mean so if you can get a print out of his test results, we might be able to help you make sense of them.

 

[Lucyr]

My suggestion would be to find out what tests were done to decide his type, what the results were, and what the normal range is, and to ask for that written down. I would ask if a cpeptide test has been done and what the results of that are (in numbers not just ‘normal’)

If his insulin production is low then this indicates more likely t1 than t2. I wouldn’t be risking stopping insulin without knowing he produces a decent amount of insulin. If they decide his insulin production is too low to stop taking insulin then I’d be wanting to remain classed as t1 if at all possible.

If he genuinely is t2 and is producing enough insulin to stop injecting it and safely move to tablets then that is a benefit. But being classed as T2 is rubbish basically, you can’t get a cgm unless on 2+ injections a day and you can’t get a pump even if on multiple injections a day. You’re usually not eligible for carb counting courses and rollout of any new technology to t2 is years behind that of t1, and more frequently not rolled out to t2.

So basically, if he there’s uncertainty about his type and he needs insulin I’d be trying to stay classed as t1 if I got any say in the matter.

 

[everydayupsanddowns]

My suggestion would be to find out what tests were done to decide his type, what the results were, and what the normal range is, and to ask for that written down. I would ask if a cpeptide test has been done and what the results of that are (in numbers not just ‘normal’)

So basically, if he there’s uncertainty about his type and he needs insulin I’d be trying to stay classed as t1 if I got any say in the matter.

I agree @Lucyr

This does seem a strange position for you and your son to have been put in @Rachelj

I hope you are able to get some clarity over all this. I think it’s important to get to the bottom of things, and to acknowledge that some cases of diabetes seem reluctant to fit into the neat simple boxes on the form.

But the treatment options available for different classifications are based on research that studies ‘classic’ cases of each type. So the nuance of lived experience can be lost.

At the end of the day I think you’d want to know what the benefits to your son are for any change in classification. And to know that it would offer better, more effective options, rather than a reduction in choices.