What type am I?

[Fingers90]

I really would like people's opinions about what type I might have. Obviously I'm not a doctor, specialist or anything like that, but I don't agree with my diagnosis.

I was diagnosed February 2016. It's important to say I had a full blood count including HbA1c on December 2015 and it came back with 44. I went to doctor in Feb 2016 for classic signs (frequent urination, unquenchable thirst, feeling unwell and wee had a sweet smell) so doctor finger pricked then called diabetes centre. Turns out my sugars were 23.1 and the nurse said "it's no wonder you feel unwell. I've seen people in comas with lower levels" (slightly scary)

When I had a new HbA1c done it came back as 144. I was diagnosed with type 1.
I was given dual action insulin and taught how to use it.

Fast forward about a year, I saw the consultant, diabetes not in control, told him I hadn't taken my insulin for a week. He snapped his head at me, obviously shocked, and sent me for GAD antibodies and c-peptides test. I apparently have no GAD but c-peptides were inconclusive, then rediagnosed to type 2.

My question is what do people think is correct? I was told it could only be type 1 as it developed extremely quickly (within less than 3 months) but a diabetes consultant says it's type 2 because of lack of antibodies. I've done some research (googled) and am interested in what others think about the situation. When I use insulin it works very well, sometimes too well and my glucose has gone down as low as 2.8 and as high as 24 when I've been too busy to care for myself. I am currently on Mounjaro, Toujeo, Fiasp and use Freestyle Libre to measure glucose.

Story time over and done with. Thanks for reading all of this, I would really value every opinion I receive.

 

[Marikev]

My understanding is that there are more types of diabetes apart from 1 and 2. Have you come across something called MODY? Think it is an acronym for something like Mature Onset of Diabetes in the young. Can’t remember off the top of my head what the parameters are for it presenting..how young is young?
To quote my lovely diabetic specialist nurse, ‘there are more varieties of diabetes that we know little about.’
Am assuming you are in the UK and there will be a distinction as I understand it between what equipment you get funded, dependent on you having a type 1 or type 2 diagnosis, CGMs? For example.
Hoping someone else comes along with some more insight for you.
best wishes

 

[Melgar]

@Fingers90 , did they only test for GAD antibodies, or did they also test for IAA, ZnT8Ab and ICA antibodies? I would ask. GAD antibodies are by far the most common, but there are three more.

MODY is a monogenic form of diabetes. That is, it is down to a change in a single gene. You usually see it in people whose family have a history of diabetes.

For more information on Type 1 antibodies see:

Anti-Islet Autoantibodies in Type 1 Diabetes - PMC

Anti-islet autoantibodies serve as key markers in immune-mediated type 1 diabetes (T1D) and slowly progressive T1D (SPIDDM), also known as latent autoimmune diabetes in adults (LADA). Autoantibodies to insulin (IAA), glutamic acid decarboxylase ...

pmc.ncbi.nlm.nih.gov

MODY diabetes

https://www.niddk.nih.gov/health-in...tes is a group,the group of atypical diabetes.

 

[Antje77]

When I had a new HbA1c done it came back as 144. I was diagnosed with type 1.

An hba1c going from 44 to 144 in only 3 months is a very good reason to suspect it's not T2.

There are more antibodies than only the GAD ones, so being negative fpr them doesn't tell you anything. Some T1's test negative for all currently known antibodies, antibody testing is very useful to rule in T1, not rule it out.

Fast forward about a year, I saw the consultant, diabetes not in control, told him I hadn't taken my insulin for a week. He snapped his head at me, obviously shocked, and sent me for GAD antibodies and c-peptides test. I apparently have no GAD but c-peptides were inconclusive, then rediagnosed to type 2.

Only a year into T1, it's completely normal to still produce a decent amount of insulin on your own, it's called the honeymoon period. I'm very surprised your consultant rediagnosed you as a T2 based on those results. Was this consultant an endocrinologist?

All this happened 7 years ago.
Chances are that a C-peptide taken now will tell a much clearer story, might be worth asking if you're in doubt.

 

[searley]

I really would like people's opinions about what type I might have. Obviously I'm not a doctor, specialist or anything like that, but I don't agree with my diagnosis.

I was diagnosed February 2016. It's important to say I had a full blood count including HbA1c on December 2015 and it came back with 44. I went to doctor in Feb 2016 for classic signs (frequent urination, unquenchable thirst, feeling unwell and wee had a sweet smell) so doctor finger pricked then called diabetes centre. Turns out my sugars were 23.1 and the nurse said "it's no wonder you feel unwell. I've seen people in comas with lower levels" (slightly scary)

When I had a new HbA1c done it came back as 144. I was diagnosed with type 1.
I was given dual action insulin and taught how to use it.

Fast forward about a year, I saw the consultant, diabetes not in control, told him I hadn't taken my insulin for a week. He snapped his head at me, obviously shocked, and sent me for GAD antibodies and c-peptides test. I apparently have no GAD but c-peptides were inconclusive, then rediagnosed to type 2.

My question is what do people think is correct? I was told it could only be type 1 as it developed extremely quickly (within less than 3 months) but a diabetes consultant says it's type 2 because of lack of antibodies. I've done some research (googled) and am interested in what others think about the situation. When I use insulin it works very well, sometimes too well and my glucose has gone down as low as 2.8 and as high as 24 when I've been too busy to care for myself. I am currently on Mounjaro, Toujeo, Fiasp and use Freestyle Libre to measure glucose.

Story time over and done with. Thanks for reading all of this, I would really value every opinion I receive.

With LADA (type1) i was still producing insulin for about 8 years as I general rule i could not go long without insulin, but if I'd been well controlled for a while I could go some weeks without insulin whilst my level slowly increased through that time

Sadly sometimes things are no clear cut in the early stages

But now you are in a stage where it will be very difficult to get a diagnosis other than T2