Potential Type 1.5 misdiagnosed as a Type 1

[HP01]

Hey everyone,

I've got a unique story that I haven't come across any articles about, and I'm curious if anyone else has had a similar experience. Nine years ago, I was diagnosed as a Type 1 Diabetic (at the age of 20). However, at my recent appointment, I was informed that I might be a Type 1.5 diabetic, pending the results of my c-peptide test since the antibody results came back negative.

Adapting to life as a Type 1 diabetic over the past 9 years has shaped my mindset, and now, I'm trying to wrap my head around the possibility of being Type 1.5. I'm reaching out to the forum to see if anyone has encountered something similar. Most of what I've read has focused on Type 2 misdiagnoses, so I'm curious if anyone has insights into being misdiagnosed as a Type 1.

Also, if anyone has ideas on how this potential misdiagnosis might have adversely affected me over the past decade, I would greatly appreciate your input. Thanks!

 

[In Response]

What do you mean by type 1.5?
I ask because it is a term that some doctors avoid because it is ambiguous. It could mean
- Type 1 with insulin resistance
- Type 1 diagnosed at a later age also known as LADA.

Both of these ar variations of Type 1.

Can you share a little more about why you had this c-peptide test 9 years after your diagnosis?

 

[HP01]

What do you mean by type 1.5?
I ask because it is a term that some doctors avoid because it is ambiguous. It could mean
- Type 1 with insulin resistance
- Type 1 diagnosed at a later age also known as LADA.

Both of these ar variations of Type 1.

Can you share a little more about why you had this c-peptide test 9 years after your diagnosis?

Thanks for your reply.
LADA is now what I'm being diagnosed with.
As for why my c-peptide test is only now being carried out I do not have an answer for you. I can only assume it has been carried out previously, but I will be bringing it up when I next speak to them.

 

[In Response]

LADA is now what I'm being diagnosed with.

In which case, this is still Type 1 and your treatment should not change.
You have not been misdiagnosed.

 

[HP01]

In which case, this is still Type 1 and your treatment should not change.
You have not been misdiagnosed.

So my treatment has changed. I used to take 90units of insulin a day and since being told I am now on around 10-15 units a day along with taking an additional tablet (dapagliflozin). As much as this is good news, It all seems like a drastic change which I can't help but think should have been caught earlier?

 

[Antje77]

So my treatment has changed. I used to take 90units of insulin a day and since being told I am now on around 10-15 units a day along with taking an additional tablet (dapagliflozin). As much as this is good news, It all seems like a drastic change which I can't help but think should have been caught earlier?

Most people with LADA are on insulin only, so your former treatment was the usual treatment for LADA.

Flozins are a relatively new class of diabetes medication, and have only recently been approved for use in T1's, so your treatment would likely have been the same all along.

Have you been warned about the risk and symptoms of ketoacidosis without high blood glucose (eu-DKA)? Do you have a ketone meter?

With flozins, you pee out glucose, so there is an increased chance on getting UTI's and thrush, so worth keeping an eye on that too.

I hope this new approach works well for you without side effects!

 

[EllieM]

I guess the question here is, does your new treatment work? What are your blood sugars doing on it? My understanding is that dapagliflozin can have some benefits for the heart and kidneys so this may be a factor in your case???

https://www.nhs.uk/medicines/dapagliflozin/about-dapagliflozin/

And like @Antje77 I would urge you to be aware of the small possibility of diabetic ketoacidosis at lower blood sugar levels than for a T1 not taking this drug. I would recommend that you ask for a blood testing meter that can check ketones,if you haven't already got one.

What sort of insulin regime were/are you on? Most T1s and LADA go on a basal bolus regime where they take 1 or 2 injections of a long acting insulin each day, combined with short acting for meals and correction doses....

I would hope that whether T1 or LADA (usually regarded as a subset of T1) the NHS is supplying you with technological goodies such as a libre glucose sensor?

 

[Leolady19]

Hey everyone,

I've got a unique story that I haven't come across any articles about, and I'm curious if anyone else has had a similar experience. Nine years ago, I was diagnosed as a Type 1 Diabetic (at the age of 20). However, at my recent appointment, I was informed that I might be a Type 1.5 diabetic, pending the results of my c-peptide test since the antibody results came back negative.

Adapting to life as a Type 1 diabetic over the past 9 years has shaped my mindset, and now, I'm trying to wrap my head around the possibility of being Type 1.5. I'm reaching out to the forum to see if anyone has encountered something similar. Most of what I've read has focused on Type 2 misdiagnoses, so I'm curious if anyone has insights into being misdiagnosed as a Type 1.

Also, if anyone has ideas on how this potential misdiagnosis might have adversely affected me over the past decade, I would greatly appreciate your input. Thanks!

I am a type 1.5 a lada they call it

 

[Ashintheuk]

It could be MODY, not LADA

 

[Circuspony]

It sounds like you were correctly diagnosed at 20 (I'm LADA but diagnosed at 43) and now they have decided to see whether this new drug will help as you were taking such a large amount of insulin. It'll be good to hear how you get on.

 

[Ashintheuk]

I was on Dapagliflozin for 3 years. It does lower blood sugar levels, but messed with my electrolyte levels and gave me permanent cramping on my lower back. So glad to be off them. So much insulin could be a sign of some insulin resistance (double diabetes) ?

 

[Vonnelene]

Hey everyone,

I've got a unique story that I haven't come across any articles about, and I'm curious if anyone else has had a similar experience. Nine years ago, I was diagnosed as a Type 1 Diabetic (at the age of 20). However, at my recent appointment, I was informed that I might be a Type 1.5 diabetic, pending the results of my c-peptide test since the antibody results came back negative.

Adapting to life as a Type 1 diabetic over the past 9 years has shaped my mindset, and now, I'm trying to wrap my head around the possibility of being Type 1.5. I'm reaching out to the forum to see if anyone has encountered something similar. Most of what I've read has focused on Type 2 misdiagnoses, so I'm curious if anyone has insights into being misdiagnosed as a Type 1.

Also, if anyone has ideas on how this potential misdiagnosis might have adversely affected me over the past decade, I would greatly appreciate your input. Thanks!

I was diagnosed type 1 in 2011 and came off my insulin 7 years later.
My consultant told me that as I don’t need them anymore, he’s discharging me from their care and that I am probably type 1,5.
Here’s a link to my story

 

[EllieM]

Most of what I've read has focused on Type 2 misdiagnoses, so I'm curious if anyone has insights into being misdiagnosed as a Type 1.

It's actually more common than you'd think. They did a study in Scotland where all the established (3 or more years) T1s visiting outpatients had their cpeptide tested.

Impact of routine clinic measurement of serum C-peptide in people with a clinician-diagnosis of type 1 diabetes - PubMed

Serum C-peptide testing can easily be incorporated into an out-patient clinic setting and could be a cost-effective intervention. C-peptide testing should be strongly considered in individuals with a clinician-diagnosis of type 1 diabetes of at least 3 years duration.

pubmed.ncbi.nlm.nih.gov

8% were reclassified as other types,mostly as T2 (5%) and some as MODY. 1.5% were able to come off insulin.
As a result, cpeptide tests are now standard in Scotland.

 

[Antje77]

It's actually more common than you'd think. They did a study in Scotland where all the established (3 or more years) T1s visiting outpatients had their cpeptide tested.

Impact of routine clinic measurement of serum C-peptide in people with a clinician-diagnosis of type 1 diabetes - PubMed

Serum C-peptide testing can easily be incorporated into an out-patient clinic setting and could be a cost-effective intervention. C-peptide testing should be strongly considered in individuals with a clinician-diagnosis of type 1 diabetes of at least 3 years duration.

pubmed.ncbi.nlm.nih.gov

8% were reclassified as other types,mostly as T2 (5%) and some as MODY. 1.5% were able to come off insulin.
As a result, cpeptide tests are now standard in Scotland.

Yes, but this is about misdiagnoses from people who were thought to be T1 and turned out to have a different type.
This thread is about getting diagnosed as a T1 and then hearing you might be type 1.5, which is still T1.

 

[HP01]

Hi all,
Hope everyone has enjoyed their holidays.

Bit of a update ... I've had a few more calls between myself and the Doctor over the last few weeks and it seems I'm actually a Type 2 diabetic not Type 1 nor is it LADA.

Some crazy life altering news, which I'm still finding difficult to process.

Over the last few weeks my sugars have steadied out and I've lowered my insulin intake by 95%, with the goal of slowly taking me off all insulin including my Lantus in the future.

I appreciate all the replies and I'm happy to provide another update if anyone is interested after my next few appointments that are coming up.

 

[EllieM]

Over the last few weeks my sugars have steadied out and I've lowered my insulin intake by 95%, with the goal of slowly taking me off all insulin including my Lantus in the future.

Thanks for the update.

Coming off insulin sounds like good news to me. Good luck on your journey. And there are plenty of knowledgeable T2s here to offer support and advice for your altered diagnosis.

 

[Ashintheuk]

T2 diagnosis takes many forms, and not all of it is insulin resistance. I found there to be a huge stigma with a T2 diagnosis.
I was misdiagnosed as a T2 for 12 years. Mine is so far out of the box, my consultant said it would be easier to manage my numbers by amputating my pancreas and using pharmaceutical intervention....and then I had a hypo whilst in the consultation with her