Type 1.5 Diagnosis

[Cait with T1.5]

Hello, I've recently been diagnosed with T1.5 after being treated, unsuccessfully, for 8 years as T2. None of the medications worked. I had the c-peptide and GAD 65 tests which gave me the diagnosis. I'm in shock after so many years of struggling and not having the right diagnosis. I wonder if others have had similar expereiences with diagnosis and how it went after you got the correct diagnosis. Thank you!

 

[Antje77]

Hello, I've recently been diagnosed with T1.5 after being treated, unsuccessfully, for 8 years as T2. None of the medications worked. I had the c-peptide and GAD 65 tests which gave me the diagnosis. I'm in shock after so many years of struggling and not having the right diagnosis. I wonder if others have had similar expereiences with diagnosis and how it went after you got the correct diagnosis. Thank you!

Hi @Cait with T1.5 , welcome to the forum.

I was a bit more lucky than you were. Only two years of misdiagnosis, and lucky enough to have been started on insulin while still deemed a T2.
So for me, not much changed upon re-diagnosis, except that my care was moved from my GP's practice nurse to the hospital team.

For me, the best thing (when I was still thought a T2) was insulin, it gave me the tools to manage my blood glucose and I felt so much better!

Would you like sharing a bit more on your own experience and where you are now?
How long have you been on insulin, and how do you find it?

 

[Fenn]

Hi, welcome, I was years as T2, C-pep got me rediagnosed as T1 (.5?) now it’s been years doing this, how’s it going? Hmmmm…

Well it’s nice being able to finally get numbers down with the correct meds, it’s nice understanding why everything you are trying isn’t working, it’s nice getting the Libre for free, as a T1 you will get treated much better by medical people (disgracefully imho).

You will have to keep a closer eye on your bg, It’s not nice having hypos, it’s not nice realizing I still can’t eat whatever I like lol I still need to eat very low carb to reduce my spikes up and down, the injections themselves are tedious.

All in all diabetes still has a huge impact on my life but its also a condition we get to control ourselves rather than relying on rubbish doctors (not all of course) I am waiting on a rediagnosis to T2, I have trust issues because if they can be wrong once, why not twice lol I had ketones on diagnosis and was told T1 before T2 by GP so technically I was T1 then T2 then T1.5

re insulin, slowly slowly catch a monkey, frustrating but better, best of luck.

 

[Fuzzykayuk]

Hello, I've recently been diagnosed with T1.5 after being treated, unsuccessfully, for 8 years as T2. None of the medications worked. I had the c-peptide and GAD 65 tests which gave me the diagnosis. I'm in shock after so many years of struggling and not having the right diagnosis. I wonder if others have had similar expereiences with diagnosis and how it went after you got the correct diagnosis. Thank you!

I’m still trying to fight a potential misdiagnosis for 13 years!! But they’re adamant I’m a T2. As they’ve said to me, I’m treated with insulin so it doesn’t matter anyway. I tried to explain it’s more about the support that comes with the T1 diagnosis as apposed to the T2 stigma. When challenged over 1.5 I was advised this isn’t a real diagnosis and it’s only 1 or 2 there is no in between.

I’m GAD negative
C-peptide 351 out of 350- yes I was 1mmol/l over the threshold for T1 diagnosis.
But I am now thyroid antibody positive.

I’m fighting with all the energy I have. I’m glad you’ve got the correct diagnosis and can move forward <3

 

[Honeyblossom]

Well done for persevering for 8 years! I have questioned my original type 2 diagnosis for a while for similar reasons. I managed to get tested for antibodies and tested positive for GAD. My GP has changed me to 'type 1' but the specialist says its too early to tell and doesn't want to test c peptide yet. I have, however started on insulin (which I was trying to delay) and I can't begin to tell you how much better I feel. All my family and work colleagues noticed straight away!! Hopefully you are on the right treatment now and feeling much better. Best wishes as you move forward.

 

[DEBBIESCOTT]

Took 25 years to be diagnosed as MODY & not type 2, then it was down to someone on this forum suggesting it & asking my then DSN, nobody in my family has ever been diagnosed with any kind of diabetes though
Every day is a struggle
Hope you’ll start to feel better soon

 

[Deleted member 527103]

When challenged over 1.5 I was advised this isn’t a real diagnosis and it’s only 1 or 2 there is no in between.

It is true that many doctors classify LADA as Type 1. Because that is what it is - Type 1 diagnosed as an adult. Symptoms may come on slower in adults than children which is one of the reasons why it can be misdiagnosed as type 2. Ignorance is the other reason.
There is also the possibility for someone with Type 1 to have insulin resistance. Some call this Type 1.5 but it is not "in between" the types - it is both types.

Thankfully, I was diagnosed with Type 1 in my late 30s with no suggestion of half types or LADA. Just a simple "you have Type 1 diabetes" diagnosis. I never heard of LADA or Type 1.5 until I joined the forum.

I wish no one had ever come up with the term "Type 1.5" because there is no official definition and two doctors could think of it as two different things whilst a third has never heard of it leaving, people like you confused, and, potentially, missing a diagnosis of Type 1 (or MODY or ...).

So, I agree with your doctor - there is not an "in between". However, there is a wrong diagnosis.