Newly diagnosed but confused

[wanderingdude]

Hi Thankyou for letting me be part of the community.

Great to know there is so much support!

I am 40, male, slim, Caucasian with a usual BMI of 28. Past few months I have had severe symptoms of diabetes, lost 3 stone in weight, chronic thirst, recurrent thrush etc.

I went to the doctors and my Blood glucose was 29mmol and had ketones detected in my blood. This was 3 weeks ago. I went to the local diabetes centre, my H1ba1c levels were over 100. They said it is type 1 likely and being treated as such until further notice. I am on 4 insulin injections per day which is bringing my levels to anything between 8mmol and 14mmol. If I don't give myself an injection it can go as high as 20mmol.

I think I've had these symptoms for many months but just got to the point of being unbearable.

I just heard that the GAD antibody test has come back as negative however?

This has left me confused because type 1 is autoimmune and type 2 is generally those who are overweight, poor diet etc.

I've heard of LADA, MODY, Type 1b, type 1.5 etc but there doesn't seem to be anything official.

I have an appointment in a couple of weeks but just a little worried and confused at the moment as to what things are and what the longer term will be,

It's obvious I have something pretty severe as my pancreas doesn't seem to be producing any insulin either that or something is attacking the cells.

Grateful for any advice or pointers please as could do with knowing more asap and not wait another couple of weeks. A friend of mine died from pancreatic cancer after being diagnosed with diabetes.

Many thanks

 

[Resurgam]

The loss in weight and need for insulin would seem to require further testing to find out why your pancreas is failing - but I have read that the GAD antibody test can be negative for type ones, it just means that the antibodies are not there at the time the test was done - don't be pessimistic about your future just on the results of one test.
My main concern was that remark about getting 20 if you don't inject - 20 is not good at all. You do not want to see 20s, so if you need insulin, have insulin, then use it. Do not neglect such numbers.

 

[wanderingdude]

Many thanks for the reply. I always take insulin, it's just on 2 occasions where I didn't (once by accident and once on purpose) and each time it was almost at 20mmol. When I take insulin it's much lower.

Just a worry at the moment as to why I have this condition but no antibodies present, I guess I will have to wait until I see the clinic and have further tests etc

Many thanks

 

[Circuspony]

I've also been recently diagnosed in my 40s. The nursing team at my first appointment told me not to get hung up on the antibody test as firstly there can be false negatives and secondly the causes of late onset "type 1" aren't very well understood.

Whatever you call our type of diabetes we are insulin dependent and that's the bit that's not up for debate. I've never actually worried about what caused it, just focus my energy on trying to manage it and stay well!

 

[wanderingdude]

I've also been recently diagnosed in my 40s. The nursing team at my first appointment told me not to get hung up on the antibody test as firstly there can be false negatives and secondly the causes of late onset "type 1" aren't very well understood.

Whatever you call our type of diabetes we are insulin dependent and that's the bit that's not up for debate. I've never actually worried about what caused it, just focus my energy on trying to manage it and stay well!

Thanks all

It's reassuring that I'm not on my own. As you say, if you are insulin dependent then you are insulin dependent regardless of what type of type 1 it is. I think I will feel better once I've seen the consultant in a couple of weeks.

It's just without a 100% diagnosis and ruling out other things it's always a worry...