Anyone else not been told which type?

[chloebeth]

My partner was diagnosed with diabetes December 2014 at 29 years old - She was put on metformin/gliclazide straight away which had very little effect but eventually brought her BMs down to around 10-12 on average with maximum doses. After 9 months they became uncontrolled and they shot back up again to mid 20's without any major diet changes. She has always had ketones unless her BM is below 10. She was put onto a background insulin, rapid insulin and stayed on 1g metformin twice a day.

However, the hospital and her DSN have remained reluctant to label her as a definitive type and are consistently telling us that they "dont know" but that her diabetes doesn't respond as it should. With carb counting we usually have to double the rapid insulin to get a BM near normal but then sometimes eating sugary things brings it down? Very odd. She has also never had a hypo despite sometimes injecting up to 40 units of novorapid with meals.

On the upside, after 16 months we are starting to finally see some control of the blood sugar! Has anyone else been in a similar situation and how did you go about it?

 

[andcol]

Hi and welcome to the forum

Have they done tests for MODY variants? If they haven't then that may be why they are reluctant to label and it is not responding as they are expecting? It may be worth doing some reading of the different types and asking her GP to arrange tests.

 

[chloebeth]

Hi and welcome to the forum

Have they done tests for MODY variants? If they haven't then that may be why they are reluctant to label and it is not responding as they are expecting? It may be worth doing some reading of the different types and asking her GP to arrange tests.

Thank you. As far as I am aware they've done the GAD antibodies which was negative but they still aren't ruling out type 1 because it can still be T1 when negative. She has 3 monthly HbA1c's through the GP, not sure if theyve done a fasting glucose and they've never done a glucose tolerance test. Not sure what other investigations were done other than the recommended renal function etc. at diagnosis. Can you enlighten me as to other tests that we could request? and would they be accurate whilst treated with insulin? x

 

[andcol]

have a read of this page http://www.diabetes.co.uk/diabetes_mody.html

 

[andcol]

also have a read of this http://www.phlaunt.com/diabetes/14047009.php
there is some useful detail in there. If you suspect this then go see the GP and request the genetic tests to find out the type as they need different treatment plans

 

[Daibell]

HI. It does sound like MODY is a possibility? I would have assumed Late onset T1 but with these very large swings it isn't as simple as that and MODY is a form of diabetes with large swings and possible. I'm not sure there are tests for MODY but there may be.

 

[TorqPenderloin]

The two big indicators I see are:
1.) 40 units of Novorapid- that's a solid indication she has insulin resistance. Although plenty of people with type 1 also have insulin resistance.

2.) GAD Test Negative- As mentioned, there are (rare) exceptions, but it does point towards something other than an autoimmune attack.

Obviously, we can't diagnose anyone so these are just thoughts from a fellow diabetic, but it's certainly possible that she may be a type 2 with little or no insulin production. For all intents and purposes, she would be the equivalent of a type 1 with insulin resistance, but an autoimmune attack may not have been the cause of her pancreas' no longer producing insulin.

While it's certainly not a deciding factor, does her bodyweight and/or weight gain/loss hint towards either type? Again, there are exceptions to every rule, but that doesn't mean it shouldn't be a consideration.

 

[chloebeth]

Thank you all for your replies! She does have other autoimmune/hormone conditions which could possibly be a factor. She's has an underactive thyroid diagnosed in 2009, and most likely (but not confirmed) polycystic ovarian syndrome. Her ALT liver function test has been consistently high since diagnosis also but not sure what this means!

She is overweight but not horrifically so and the weight has remained stable, alas, she didn't have any extensive weight loss whilst undiagnosed like most people would have which I think is why it was left undiagnosed for so long.

I will certainly look into MODY!