Misdiagnosed type 1 possibly type 2

[CDF2368702]

Hi.
I have been type one diabetic for 13/14 years, having been diagnosed at 21 years of age.
Today i was told that i could potentially have type 2, which they discovered in a c-peptide result.
Has anyone had anything similar?
I’ve always been slim, pretty healthy etc so today was a bit of a shock to say the least.
Has anyone experienced anything similar?
Thanks 🙂

 

[Inka]

Welcome @CDF2368702 🙂 A member who immediately sprung to mind is @Eternal422 who had been treated as a Type 1 for years but was then told he’s Type 2. Hopefully he’ll see this tag and respond to you.

Do you know what your C Peptide result was? Do you have Type 2 in your family? Did they do the Type 1 antibodies test too? What made them look again at your diagnosis?

 

[Leadinglights]

Hi.
I have been type one diabetic for 13/14 years, having been diagnosed at 21 years of age.
Today i was told that i could potentially have type 2, which they discovered in a c-peptide result.
Has anyone had anything similar?
I’ve always been slim, pretty healthy etc so today was a bit of a shock to say the least.
Has anyone experienced anything similar?
Thanks 🙂

For quite a few people it is the other way round.
Have they also done antibody tests?
There are also many who are Type 2 but still need insulin to manage their condition so your treatment plan may not change.

 

[CDF2368702]

Hi thank you for the replies.
I am unsure of the details of the result yet but i have an appointment in two weeks with the consultant.
No family history of any type of diabetes.
Yes they tested for GAD anti bodies and my understanding from the phone call today is that i don’t have any anti bodies. Although, from what i have read, that doesn’t necessarily mean I’m not type 1 (apparently 25% of type 1s don’t have them). The reason they are exploring it was because I have been on such little amounts of insulin for quite some time and therefore wanted to check if my pancreas was producing any… . The nurse indicated that the results from the GAD antibody test and C-peptide collectively, suggested it was more likely type 2 rather than type 1. Shocked doesn’t even cover it.

 

[Inka]

How small are your doses? Type 2 is often associated with ^larger^ doses of insulin due to insulin resistance. I think in your position I’d write a list of questions for when you see the consultant. You’ll be all prepared then and be able to ask what you want and clarify things in your head.

 

[CDF2368702]

I do 1 unit per 10G of carbs currently
Background total 4 units of insulin per day
Yes, i’ve got lots of questions to ask them, that’s a good idea. Thank you

 

[Flower]

Hello and welcome @CDF2368702

Have they mentioned Mody diabetes to you and potentially investigating that? Some types are diagnosed in early 20’s with a low insulin requirement.

This information about various types of Mody is from Diabetes UK

Maturity onset diabetes of the young (MODY)

MODY is a rare form of diabetes which is different from both type 1 and type 2 diabetes, and runs strongly in families. MODY is caused by a mutation (or change) in a single gene. If a parent has this gene mutation, any child they have, has a 50% chance of inheriting it from them. If a child does...

www.diabetes.org.uk

It may not be relevant to your situation at all - I’ve just read you dont have diabetes in your family- but worth a read as it may make more sense than suggesting Type 2. I hope you get some clarification from the appointment.

 

[CDF2368702]

Hi, thank you for the response and info. When I spoke to them, they just suggested it could more likely be type 2 at first look of the results, but that they need to further investigate. From my reading today, i’m learning a lot about different types, including MODY, I’m keeping an open mind that it could be this however with no apparent genetic link in my family, it feels unlikely. You never know though. It’s just a big adjustment when you’ve lived with thinking it’s type 1 for this long, very difficult to get my head around.

 

[louisew]

I do 1 unit per 10G of carbs currently
Background total 4 units of insulin per day
Yes, i’ve got lots of questions to ask them, that’s a good idea. Thank you

I’m type 2, and I’m on around the same dosages as you

 

[rebrascora]

I’m type 2, and I’m on around the same dosages as you

Or YOU might just be a misdiagnosed Type 1. From what I remember you are slim and very fit and active.

 

[louisew]

Or YOU might just be a misdiagnosed Type 1. From what I remember you are slim and very fit and active.

and negative antibodies test

 

[rebrascora]

Yes, I don't believe a negative antibody test totally rules out Type 1 although I am sure there are some doctors and indeed consultants who think it does. From memory (and I may be remembering incorrectly) you had a more typical clinical presentation of Type 1 than Type 2, plus your very low insulin needs suggest minimal insulin resistance. I would say that there are no obvious metabolic factors which indicate Type 2 so there is no more reason that you should be considered Type 2 than you should not be considered Type 1 if that makes sense. They are just using a negative Type 1 test result to indicate you must be Type 2, when you have no indicators for Type 2 from what I remember, so their logic doesn't hold up.

 

[SB2015]

If you have had Type 1 for a long time it is quite possible that there will be a negative GAD antibody test. They will have already done their job of destroying the beta cells so no longer needed.
Your ratio for carbs to insulin is not unusually low and like that of many of us or near the values.
It is the c peptide that could be the decider. If you are still producing your own insulin and have negative antibody test then that could cause confusion.

For each of us there is no typical insulin needs, just what we e@ch need as an individual, and for many of us this changes over time. Keep asking questions and let us know how you get on.

 

[louisew]

Yes, I don't believe a negative antibody test totally rules out Type 1 although I am sure there are some doctors and indeed consultants who think it does. From memory (and I may be remembering incorrectly) you had a more typical clinical presentation of Type 1 than Type 2, plus your very low insulin needs suggest minimal insulin resistance. I would say that there are no obvious metabolic factors which indicate Type 2 so there is no more reason that you should be considered Type 2 than you should not be considered Type 1 if that makes sense. They are just using a negative Type 1 test result to indicate you must be Type 2, when you have no indicators for Type 2 from what I remember, so their logic doesn't hold up.

The only reason I am on low amounts of insulin is because of my low carb diet of 60g per day. If I eat more carbs, I have to increase my insulin. I also take 1000g of metformin which stops my liver producing glucose in the morning and when I exercise and it keeps my blood sugar stable. My hbac1 is 5.6 purely because of how I control my diet.

 

[Lucyr]

You need to get the actual number and units from the cpeptide test, that’s the big decider here

 

[Eternal422]

Hi @CDF2368702 , as @Inka says, I have recently gone through this.

Very briefly my history was : diagnosed T2 in my 40s after OGTT, put on Metformin and then Glibenclamide for 5 years during which time my HbA1c doubled to 144. At this point I went onto basal-bolus insulin and taken off oral meds. For the next 17 or so years I have been on roughly 24U basal and 1U:10g without any changes.

Just before Christmas I had a new consultant who decided before any tests that I was T2 and a cpeptide (after breakfast, so a stimulated cpeptide test) was 642, indicating that my pancreas is producing some insulin but not enough to be normal and not high numbers as to indicate T2. The DSNs had considered me T1 given very little insulin resistance and the amount of insulin I need to remain stable. I am now in a grey area but with some excellent support from my DSN remain on basal bolus insulin and a CGM (Libre 2+). So no changes other than a label which would prevent me from accessing insulin pumps, HCL, etc. which I’m not too bothered about.

 

[Eternal422]

Forgot to say that my GAD antibody tests were all negative, but after so long since diagnosis this was no surprise to anyone.

What I would say is that it is a massive shock and an upset, especially being treated as T1 for so long. It feels like the rug has been pulled out from underneath you. I have been very fortunate in that my DSN at the hospital is very supportive and basically overruled the consultant who wanted to take me off insulin and put me on oral meds, despite me having told her my medical history that oral meds had no effect in reducing my HbA1c at all!

My DSN has now moved me to a different consultant (whom I’ve yet to see and won’t be until an appointment in April) as trust has been lost already after my first encounter with the consultant and all of this upset of T1/T2. This first consultant even sent a letter to my GP saying that she was taking me off insulin and putting me on oral meds without any discussion with me at all! The first I knew was when I saw the letter on the NHS app under the GP Health Record!

So, I would say ask your DSN for advice and help. Your treatment plan could well stay the same, i.e. to remain on insulin alone. My DSN basically said that oral meds would give me less control and flexibility than insulin and that in any case I would end up back on insulin pretty quickly as it would appear they failed to keep my BG stable.

From my medical records it looks like something happened to my pancreas to reduce insulin production over a 5 year period (at most) where it remains at this low level. It is too late now to ascertain exactly whether it was caused by an autoimmune condition or not. Although I’d like to know exactly what it is, in reality it doesn’t matter as I am continuing on insulin alone.

I wish you well in getting the treatment plan that suits you and your lifestyle. Remember that any treatment plan has to be agreed between health professional and the patient. They will give you their advice but ultimately it is down to you to make an informed decision. Good luck and keep us updated with how you get on.

 

[CDF2368702]

Forgot to say that my GAD antibody tests were all negative, but after so long since diagnosis this was no surprise to anyone.

What I would say is that it is a massive shock and an upset, especially being treated as T1 for so long. It feels like the rug has been pulled out from underneath you. I have been very fortunate in that my DSN at the hospital is very supportive and basically overruled the consultant who wanted to take me off insulin and put me on oral meds, despite me having told her my medical history that oral meds had no effect in reducing my HbA1c at all!

My DSN has now moved me to a different consultant (whom I’ve yet to see and won’t be until an appointment in April) as trust has been lost already after my first encounter with the consultant and all of this upset of T1/T2. This first consultant even sent a letter to my GP saying that she was taking me off insulin and putting me on oral meds without any discussion with me at all! The first I knew was when I saw the letter on the NHS app under the GP Health Record!

So, I would say ask your DSN for advice and help. Your treatment plan could well stay the same, i.e. to remain on insulin alone. My DSN basically said that oral meds would give me less control and flexibility than insulin and that in any case I would end up back on insulin pretty quickly as it would appear they failed to keep my BG stable.

From my medical records it looks like something happened to my pancreas to reduce insulin production over a 5 year period (at most) where it remains at this low level. It is too late now to ascertain exactly whether it was caused by an autoimmune condition or not. Although I’d like to know exactly what it is, in reality it doesn’t matter as I am continuing on insulin alone.

I wish you well in getting the treatment plan that suits you and your lifestyle. Remember that any treatment plan has to be agreed between health professional and the patient. They will give you their advice but ultimately it is down to you to make an informed decision. Good luck and keep us updated with how you get on.

Thank you so much for this detailed message it has certainly put my mind at ease with respect to the fact that i’m not the only one going through something like this. Yes, yesterday was certainly a huge shock to me. I guess until I have my appointment in a few weeks I won’t know for certain what the plan is. I also wonder what caused my initial poor health and quick deterioration as my symptoms were very much in line with being a type 1. I was on acne medication at approximately 20 years of age, within a year of being on this I lost a lot of weight and energy, extreme fatigue etc. i’ve done some research and there is a link between this and developing auto immune conditions, but I guess I will never know for sure!

Sorry to hear about your poor experience and hope that things take a turn for the positive moving forward, with a supportive DSN

 

[everydayupsanddowns]

Welcome to the forum @CDF2368702

Not having antibodies (especially after a decade) does not necessarily rule out T1.

Having some cPeptide does not rule out T1. Several Joslin institute T1s with 50, 60, or 70 years of T1 on the clock still have measurable cPeptide.

Very low insulin doses do not suggest T2 (where insulin resistance is usually a factor).

You initially had rapid onset in your 20s at a normal weight, and experienced weight loss and the 4Ts of type 1 diabetes. (Tired, toilet, thirsty, thinner)

Have you been given any reason why they think you are T2 all of a sudden? And what benefit would this reclassification be to you as the person living with diabetes. What clinical factors in your presentation suggest T2?

Eg if you wanted to move to hybrid closed loop insulin pump, you might be eligible as T1, but there is no guidance that recommends insulin for ‘classic’ T2 (overweight/obese, insulin resistant, increasing weight, diagnosed 50+). And reviews of evidence treat all T2s as ‘classic’ cases under PICO (population, intervention, comparator, outcome).

But from what you have said, you are far from a classic T2 phenotype.

I just don’t know what you get out of the reclassification?

 

[CDF2368702]

Welcome to the forum @CDF2368702

Not having antibodies (especially after a decade) does not necessarily rule out T1.

Having some cPeptide does not rule out T1. Several Joslin institute T1s with 50, 60, or 70 years of T1 on the clock still have measurable cPeptide.

Very low insulin doses do not suggest T2 (where insulin resistance is usually a factor).

You initially had rapid onset in your 20s at a normal weight, and experienced weight loss and the 4Ts of type 1 diabetes. (Tired, toilet, thirsty, thinner)

Have you been given any reason why they think you are T2 all of a sudden? And what benefit would this reclassification be to you as the person living with diabetes. What clinical factors in your presentation suggest T2?

Eg if you wanted to move to hybrid closed loop insulin pump, you might be eligible as T1, but there is no guidance that recommends insulin for ‘classic’ T2 (overweight/obese, insulin resistant, increasing weight, diagnosed 50+). And reviews of evidence treat all T2s as ‘classic’ cases under PICO (population, intervention, comparator, outcome).

But from what you have said, you are far from a classic T2 phenotype.

I just don’t know what you get out of the reclassification?

Thank you for your reply
The only reasoning they said I could be type two is because of the cPeptite result (unsure of exact number) and the no antibodies.

They said it could be a positive as I would move off insulin.

At my last appointment they adjusted my bolus from 1-15G to 1-10G and since that my overall levels have been a lot lower/ I’ve probably had a few more hypos than usual as well.

I’ve always been a decent weight for my height/age
5ft11 and approx 87KG