After 15+ years… my diabetes type

[Lucyr]

As I’ve shared bits of my story here and there, and updated my diabetes type in my signature I thought I’d share the discussion I had on what type of diabetes type I have. This is a question I have been having for the many years I have had diabetes so it was good to talk about it with the doctor.

I was diagnosed age 21 with T2. No symptoms, was being tested for something else and it seemed to be caught early. None of the T2 medications worked, insulin was suggested within less than a year but I said no and we tried the non insulin injectables instead. Didn’t work either but I was moving house a lot and not getting consistent care. A couple of years in I moved straight to basal bolus MDI insulins of Lantus and apidra right at my first DSN hospital appointment, they just started it there and then!

No big family history of T2, a grandparent died of diabetes complications when he was about 30, back in the early 60s, unknown type but would guess 1. A grandma got T2 in her 80s, I have many siblings and none have diabetes but all have other immune conditions.

I’ve always had difficulties with weight, autism means I tend to stick to plain carb foods. I am losing weight now but my bmi I imagine will be well into obese for many stones of loss. At the same time, low carb always makes my bgs harder to manage and I am quite prone to ketones.

So I had the cpeptide and antibody tests at last, last year. I had been asking for these over the years but always told it doesn’t make a difference since already on insulin. It does make a difference though for access to libre sensors, pumps, etc.

Pressing post before my phone loses this…

 

[Lucyr]

My c-peptide was low, well below the T2 range but just above the T1 range. I think it was 265 with it being a stimulated blood test taken 2hrs after a meal without insulin and a bg of about 17.

The antibodies I don’t think he said the number but that I had a few but not enough to be T1.

The conclusion was that he couldn’t decide what type of diabetes I have. It sounded like these diagnostic thresholds of tests are calculated based on the vast majority of people and so some people will be outliers. There’s a lot about diabetes that Isn’t understood, it’s not as simple as T1 / T2 / T3, there’s probably a lot more types that we don’t understand.

As I don’t produce much insulin and seem prone to ketones then it would be sensible to always stay on insulin. Even if I lose a lot of weight either naturally or with a surgical procedure to support with this, I’d still be safest staying on at least a low dose of insulin.

I do produce some insulin even if it isn’t much, and I do find it quite erratic, so this kind of permanent honeymoon explains why I find my diabetes unpredictable at times too.

Overall, it was a helpful conversation. I’d been expecting the answer to be “definitely t1” or “definitely t2” and hadn’t considered the possibility of it not being certain either way, even though if you asked me that would have been my opinion!

 

[rebrascora]

It must be so frustrating for you Lucy, being either misdiagnosed or undiagnosed for such a long time and still not having a definitive answer.
At least you now get CGM on prescription and you clearly need insulin, but I can imagine if you move again, you may end up having these same conversations again with other HCPs and perhaps having to battle again to get the support that you need and perhaps a pump would help you manage your levels more easily but without that Type 1 label, you would struggle to even be considered. It is all terribly unfair. I also believe that a lot of HCPs are much less sympathetic towards Type 2s than Type 1s, so you can also be fighting their own personal or possibly institutional bias, which can make appointments difficult and demoralising.

It is good that you have documented this and I think it is important for others as we do have a few people come to the forum whose type of diabetes is in question and I am sure it must be very unsettling for them. I only had a few months of uncertainty, but it was enough to understand what it is like, even for that short time.

 

[Lucyr]

Yes I think the computer will still say T2 which is a shame because as you say, if I have someone different in the future they might try to take me off insulin and I’d have to explain. That wouldn’t go well for me, as I struggle to speak to people I don’t know, so wouldn’t be able to explain properly. A pump is something I’d like as I think it would help me manage the erratic side of things, but I didn’t say anything as I prefer to concentrate on one thing at a time and for now that one thing is diet and weight loss.

 

[grovesy]

A few years ago the Exter Researchers had identified over 40 diffegnt Types of Diabetes.

 

[PattiEvans]

I had over 8 years of being told I was T2 - my diagnosis had been over the phone from the local DSN to the surgery nurse. The DSN had never met me and based the diagnosis solely on my age (57), despite ketones. I'd been on insulin all that time, but denied any carb counting or any education in any form. Like you @Lucyr I had to fight for anything I got. It took an emotional break-down in the GP nurse's surgery to get a referral to the Endo who finally did a C-Peptide and declared me T1. It did come as a huge relief! It also completely changed the attitudes of the HCPs I had to deal with after that. So I understand how you feel - though I can't know what it's like not to be able to advocate for myself easily which must be very frustrating for you.

I do feel for you and send you good wishes and hugs.

 

[DaveB]

Hi. I've been down the same route and it's very frustrating. I'd like to see change where when it's obvious you are suffering beta cell death confirmed by the C-Peptide test that you are defined as T1. Putting us all in the T2 group is pretty silly and not helpful

 

[Lucyr]

Hi. I've been down the same route and it's very frustrating. I'd like to see change where when it's obvious you are suffering beta cell death confirmed by the C-Peptide test that you are defined as T1. Putting us all in the T2 group is pretty silly and not helpful

Yeah that would be really useful, to differentiate the “can’t safely be taken off insulin” people at least even if not classing as t1, since I do understand that t1 has a set definition already

 

[Wendal]

Lucy r.
As I have said elsewhere labelling people Type 1 or Type 2 is understandable as people want to give a diagnosis and then follow a treatment plan.
However I think of diabetes as being either a deficiency ( so basically you cannot produce enough of your own insulin an is characteristic of Type 1 or as a resistance issue so characteristic of Type 2.
If your Beta cells are not producing enough insulin which you have stated then you are going to have to supplement or replace with exogenous insulin. Yes a variety of non insulin medications can help to maximise what little production you may have but to me the best choice is external insulin both to give your beta cells a break and also to best reduce hyperglanemia and concomitant risk of DKA.

 

[everydayupsanddowns]

The conclusion was that he couldn’t decide what type of diabetes I have. It sounded like these diagnostic thresholds of tests are calculated based on the vast majority of people and so some people will be outliers. There’s a lot about diabetes that Isn’t understood, it’s not as simple as T1 / T2 / T3, there’s probably a lot more types that we don’t understand.

Overall, it was a helpful conversation. I’d been expecting the answer to be “definitely t1” or “definitely t2” and hadn’t considered the possibility of it not being certain either way, even though if you asked me that would have been my opinion!

Ack! Sorry to hear the results came back after all that effort and waiting, only for them to be inconclusive.

Were you able to say that all things being equal, and the uncertainty still being what it is you would find it easier to be described as T1 or LADA, and share your concerns about advocating for yourself in the future is someone assumes ‘standard T2‘?

I think that’s a pretty compelling argument your particular circumstances, and I can‘t imagine many compassionate Drs not seeing is as appropriate in your case.

You’ve written it so eloquently above - could you send an email, letter or perhaps e-consult?

 

[Lucyr]

Ack! Sorry to hear the results came back after all that effort and waiting, only for them to be inconclusive.

Were you able to say that all things being equal, and the uncertainty still being what it is you would find it easier to be described as T1 or LADA, and share your concerns about advocating for yourself in the future is someone assumes ‘standard T2‘?

I think that’s a pretty compelling argument your particular circumstances, and I can‘t imagine many compassionate Drs not seeing is as appropriate in your case.

You’ve written it so eloquently above - could you send an email, letter or perhaps e-consult?

I think for now I’ll wait and see what the letter says and how things go but it is definitely something I’d consider trying to explain and request in the future if I have any more bad experiences of Drs trying to take me off insulin (this has happened many times).

I do have a friend who has T1 who has called on my behalf before to help request/explain things like needing to see the same doctors each time as much as possible. They just had to call me to ask permission to speak to him first, then he explained better than I could have done verbally.

 

[Lucyr]

I have the actual results now

A1c 57
Cpeptide stimulated 265 pmol/L (low)
IA-2 antibodies 11IU/ml (slightly positive)
Cholesterol 4.4
Kidneys both results normal

 

[rebrascora]

Considering how long you have been diagnosed, the fact that the antibody test is only "slightly positive" is to be expected. To my mind it is enough to diagnose you as Type 1 taking into consideration all your other history and how long after diagnosis it is, but the cynic in me could see it going either way, depending if the consultant.
When is your next appointment? ie. How long do I have to keep my fingers crossed for you!

 

[Lucyr]

Considering how long you have been diagnosed, the fact that the antibody test is only "slightly positive" is to be expected. To my mind it is enough to diagnose you as Type 1 taking into consideration all your other history and how long after diagnosis it is, but the cynic in me could see it going either way, depending if the consultant.
When is your next appointment? ie. How long do I have to keep my fingers crossed for you!

This is from the letter after the appointment. The doctor said it was inconclusive about my type because my cpeptide was low but higher than a normal t1 would be now, and antibodies only slightly positive. We decided I should stay on insulin even if I lose significant weight, as weight loss isn’t likely to make my body produce more insulin

 

[Lucyr]

To my mind it is enough to diagnose you as Type 1 taking into consideration all your other history and how long after diagnosis it is, but the cynic in me could see it going either way, depending if the consultant.

The Cpeptide range I found online said severe insulin deficiency (T1) would be under 200, substantial insulin secretion (T2) would be over 600, and intermediate insulin secretion would be 200-600.

Mine was 265 so can see where the undetermined is coming from, but I have always felt that my treatment / diabetes behaviour fits most with a “t1 in honeymoon with a spluttering pancreas” type situation, so I can comfortably continue thinking of myself like that now

 

[Mbabazi]

I have the actual results now

A1c 57
Cpeptide stimulated 265 pmol/L (low)
IA-2 antibodies 11IU/ml (slightly positive)
Cholesterol 4.4
Kidneys both results normal

curious if your c peptide was a urine or a plasma one. My diabetes too is unclear and they did both tests and the blood was low but the urine was insufficient and the tests were done at the same time.

 

[Lucyr]

curious if your c peptide was a urine or a plasma one. My diabetes too is unclear and they did both tests and the blood was low but the urine was insufficient and the tests were done at the same time.

Stimulated blood cpeptide. My bg was about 18 and it was 1.5-2 hrs after a meal so the normal range is quite high, as your body should be producing a lot of insulin to deal with the food and there bg of 18

 

[Bubbleblower]

Type 1's have a dysbiosis that makes them (more) autistic, I don't know if the same is true for type 2's.

Yeah that would be really useful, to differentiate the “can’t safely be taken off insulin” people

That is what they are already doing in Europe, people who still have "substantial" C-peptide (more than 30% of all type 1's), are taken off insulin. Safely, I think. This is very difficult though, because most people don't dare to stop taking insulin, because of all the scaremongering on social media.

Your doctors are not trying to kill you, trust them.

 

[Lucyr]

Your doctors are not trying to kill you, trust them.

The amount of times I’ve been taken off insulin and ended up with really high ketones, I don’t actually want to trust anyone who wants to take me off insulin. My dr has advised based on the cpeptide results that I will always need to stay on insulin so not sure what your point is here.

Type 1's have a dysbiosis that makes them (more) autistic, I don't know if the same is true for type 2's.

Where did you read this? I run an autism group and know at least a hundred autistics, probably more. None of them are t1 diabetic.

 

[Bubbleblower]

The amount of times I’ve been taken off insulin and ended up with really high ketones

You didn't mention that before.
My point was many type 1's are taken off insulin.

Also; the prevalence of ASD and ADHD in T1DM children and adolescents was 1.1% (95% CI: 0.8–1.5) and 5.3% (95% CI: 4.3, 6.4), respectively, both higher than the global prevalence of ASD and ADHD in the general population in 2019 (0.4 and 1.1%).

Association between type 1 diabetes and neurodevelopmental disorders in children and adolescents: A systematic review and meta-analysis