why can't they diagnose whether I am Type 1 or 2?

People getting diagnosed in their 40s would most likely (statistically) suggest type 2.

Yeast infections for a year rather implies the high sugars have been around for at least this long.

In type 1 the body's immune system begins to target and destroy it's own insulin producing cells. In the most understood form of type 1 diabetes, the body would not be expected to live for much more than a few months, as the destruction on the insulin producing cells is relatively quick.

In type 2, the body becomes resistant to its own insulin. The body will compensate by releasing more insulin. If the insulin demands become too consistently high, it is thought that the body's insulin producing cells may 'burn out', which can start to mimic the the effects of type 1 diabetes -including weight loss.

Your health team will (I assume) likely be doing c-peptide tests to see how much insulin you are producing to try to ascertain which diabetes may be present. My understanding of this is that it's not a clear cut thing though, as both above types of diabetes can lead to lack of insulin production.


Don't take anything here as gospel, this is purely my understanding of things having done a fair amount of reading around in my time.

I'm in the same boat, and had a long discussion with my consultant about it

And while they have done loads of tests there are no clear indications either way at the moment

What she did say us, I'm being treated as a type 1, I'm carb counting and medicating accordingly like a type 1.. So she will list me as a probable type 1. Until such time there is more evidence either way

Hi Imogen.

I'm in a similar situation to you. Was diagnosed in Feb aged 39. Always been slim and healthy, no history in family. I'd gone from about 8 st 9 to 7 st 4 in a year and most notable, I'd lost all muscle mass and fat. I had the thirst etc too. Also strongest keytones possible when went in to hospital.

I was put on insulin immediately and told I was being treated as type 1 but was in limbo for about 3 weeks waiting for a GAD test to come back to see if my antibodies were the cause, and it came back positive, hence type 1 . I know diabetes is hard either way, but it did help to be given a label!!!

I'm obviously not an expert being so new to it all, but as far as I can gather this GAD test is conclusive.

Hope this helps in some way.

Paula

It's probably because "Type 1" and "Type 2" are fairly arbitrary definitions that don't really mean that much. There are lots of different causes for Type 2 diabetes, that are all clumped under the same diagnosis because they share common symptom (high blood glucose levels).

Most of us never get tested to see if we don't produce enough insulin or if we are insulin resistant. I'm sure there are lots of Type 1 diabetics wrongly labelled as Type 2, and vica versa.

The truth is that no-one really knows what causes any of it.

I agree with Borofergie. In practice there aren't just the two types i.e. type 1 & type 2. There is a spectrum of types with a wide range of causes. There is a long list of defective genes that are known to increase risk apart from illness, viruses, pregnancy, being over-weight and so on. I was never tested and just dumped in the Type 2 group based on age. At least the treatment paths are very similar. The important thing is to measure with a meter and have regular HBa1c checks so you know whether your treatment regime is working or not. You are lucky that your doctor did the right thing and referred you for further tests which hopefully will determine what level of medication you need

In my case (rediagnosed from T2 at 34 to T1 at 36 with no direct family history of T1 or T2, and the GAD test was the key one. My understanding is that c-peptide measures secretion of insulin. In a non-insulin using diabetic, this is your endogenous insulin, i.e. what you are producing yourself, which would indicate towards either T1 or T2 on the result, i.e. lower than normal is T1, higher is T2. I was told that if you inject insulin, then this would mask whether you still have insulin production in your beta cells (or at what level). Having said that wikipedia seems to suggest you can still use c-pep levels in insulin using diabetes to separate out what level of endogenous insulin is left.

A positive result for (Anti-)GAD antibodies should mean that your diabetes is definitely autoimmune, i.e. type 1, which was the case with me, but apparently a lack of the anti-bodies doesn't necessarily rule T1 out, hence it may be difficult to say one way or the other. My endo says I'm definitely T1 category, either late onset T1 or LADA, but given that the tests to ascertain which is which are expensive and the treatment is the same in either case, he didn't see the point. Late onset can be much slower to come on than juvenile or early onset, so you don't necessarily plunge in a diabetic crisis in the same way.

I too spent some time with very high blood sugars despite all my best efforts and essentially went straight from metformin to insulin after two A&E admissions for possible DKA and weight loss of about a stone in two to three weeks. During the first one, (three consecutive readings of HI on my meter and 4+ ketones with sinusitis and oral thrush - nice) the A&E doc said: you're type 2 so can't get DKA and you just need to get your sugars under control. Very helpful!

During a couple of months, the only reading I ever had in single figures was after a 2 mile run, when I registered 9.8 (not that I should have been exercising with such levels, as I now know). My fasting levels were always in the 20s. I have to thank a GP (not my own) who saw me with the throat and sinus infections and suggested I was probably T1 not T2.

I totally agree how hard it is not fitting in a box, particularly if your diabetes isn't responding to your best efforts. Keep pushing for tests, particularly GAD antibodies. If you are T2, then you may be able to come off insulin and try some other options. For me, the GAD test just confirmed I would be on lifelong insulin, but I felt I had time to come to terms with it. (Apologies for long post!)

Hi Imogen i was in same boat after originaly being diagnosed type1 and put on insulin.But after a couple of months they took me off insulin as i kept having hypos even when reducing insulin to next to nothing.But on my last visit to clinic my consultant said i was definitely type 1 as i had lots of ketones when first diagnosed.I am still only diet controlled at mo though just waiting for honeymoon period to come to end .Hope this helps and good luck for future.
lee

Hi Imogen!

Well done on your diagnosis! I had a very similar situation to you and ended up very ill because DSN kept insisting I was Type 2. She was wrong! By the time I got a proper diagnosis I was down to 6.5 stones. As soon as I went onto insulin (basal only at first) I started to feel better. After a couple of months of that, they realised I was still producing quite a lot of basal and really needed quick-acting. Stopped the basal and went onto Apidra - absolute miracle! Finally reintroduced a very small morning dose of basal to supplement my own and I'm really well. A year on, I'm still tweaking the doses, but I'm now back to 7 stones and able to eat much better.

Don't give up. It will take time to sort out the most appropriate regime and doses for you, but you will get there. Getting the accurate diagnosis is a very important first step!

Good luck - you are on your way to better health!!

Smidge