Newly diagnosed but which type?

[rarossiter]

Hi all,

So at the beginning of October I was diagnosed with diabetes but I stall have not been given a definite of which type.

I'm still waiting on blood tests and then the results but I seem to have a lot of conflicting information from doctors and specialists. Such as its type 1, it's type 2, you don't need insulin, you might need insulin, if the tests are negative it's definitely type 2, if they are negative it might still be type 1. Safe to say I'm overwhelmed. Not to mention I have 2 glucose meters that are giving different results!

Has anyone been through anything similar and if so how long did it take to get an answer?

Thanks.

 

[KK123]

Hi all,

So at the beginning of October I was diagnosed with diabetes but I stall have not been given a definite of which type.

I'm still waiting on blood tests and then the results but I seem to have a lot of conflicting information from doctors and specialists. Such as its type 1, it's type 2, you don't need insulin, you might need insulin, if the tests are negative it's definitely type 2, if they are negative it might still be type 1. Safe to say I'm overwhelmed. Not to mention I have 2 glucose meters that are giving different results!

Has anyone been through anything similar and if so how long did it take to get an answer?

Thanks.

Hi there, oh YES is the answer to your question. I was 56, did not fit the so called profile for type 2 other than age (Very high glucose level & ketones, slim, active which I know can fit any of the types but they didn't appear to). Straight into hospital and put on insulin whilst they umm'd and ah'dddd. Half the Consultants said type 1 and the other half type 2 but this was based on stereotyping as far as I could tell. The first dose of insulin put me into a hypo whilst in hospital so they said I was not insulin resistant either (to this day who knows if that's a true statement as I am sure that enough insulin would put most people in a hypo).Anyway, over the next 8 weeks they still wouldn't/couldn't say. So I had a C peptide test (to tell them how much insulin of my own I was still producing - 'lower end of normal') and an antibody test (positive). They weighed all of this up and said type1. 3 years previously I had been diagnosed as pre diabetic so that was another puzzle to them. You will get plenty of stories on this site but it is pretty normal for them not to be able to say straight off and if they do those extra tests (are they doing them for you?) then this does help to diagnose. Hope this helps. x

 

[KesLouise]

I feel your pain! Went through something similar myself after finally being given an answer. It’s frustrating but be persistent until you get your answers

 

[mandedog]

Hi all,

So at the beginning of October I was diagnosed with diabetes but I stall have not been given a definite of which type.

I'm still waiting on blood tests and then the results but I seem to have a lot of conflicting information from doctors and specialists. Such as its type 1, it's type 2, you don't need insulin, you might need insulin, if the tests are negative it's definitely type 2, if they are negative it might still be type 1. Safe to say I'm overwhelmed. Not to mention I have 2 glucose meters that are giving different results!

Has anyone been through anything similar and if so how long did it take to get an answer?

Thanks.

I am going through something very similar but don't want to steal your thread so I will start my own. But what I will say is that my health care team assure me that eventually I will have answers and some stability so I am holding on to that hope and hope that this will be the case for you as well. This sucks!!!!!!!

 

[rob_o]

I’m very similar. I was diagnosed March 2017. I started to lose weight suddenly and ended up with an overnight stay in hospital hooked up to an insulin drip. There was a discussion that that I was type 1 but the blood tests weren’t conclusive. But they ruled out type 2. I had my latest consultant appointment a week ago and they are still not sure. They was me to have all the tests repeated but they say they will continue to treat type 1.

Its quite frustrating but let them work out the treatment and try not to worry. I was hung up on not knowing but I had my insulin and tester it’s really a matter of working out what’s best for you.

 

[Marie 2]

@rob_o Make sure you have a C-peptide test and an antibody test.

The C-peptide tells how much insulin you are making. As a type 2 this number will be on the high side as a type 2's problem is not in the ability to make insulin as they can't use the insulin properly. So they usually are making the higher end of normal or more than normal. For a type 1 this number is on the lower side and as type 1 progresses, that number will get lower as your body destroys your beta cells and you can't make insulin.

The antibody tells if you have the antibodies most type 1's have that attacks your beta cells. If you test positive on this test you are a definite type 1. Eventually over years the anti bodies start to drop as all your beta cells are killed or almost all killed. They mostly do a GAD antibody test but there are a few others. There are a few rare type 1's that don't have the antibodies but don't make insulin, they will still test low or none on a C-peptide test.

40% of us type 1's are misdiagnosed as type 2's at first. One of the signs they say to watch for is needing insulin within 3 years of diagnosis. And DKA is almost always a symptom of type 1 versus type 2. Rarely happens to a type 2. And being skinny or losing weight and not trying is also more a type 1 condition than a type 2.

 

[Daibell]

Hi. Many of us have been down the same route and I remain wrongly diagnosed as T2 but at least having the right meds. You need the C-Peptide and GAD tests. C-Peptide as others have said is quite useful. If it's high you are T2 and if low you are LADA (Late onset T1). A negative GAD does not mean you are T2. If you are slim or have lost weight recently unexpectedly then T1 becomes more likely. Most LADAs so through a honeymoon period where the pancreas increasingly fails. This means you can start with just tablets but insulin will eventually be needed. It took me 8-10 years and for others it may just be months. The honeymoon period confuses many GPs as they assume T2 by guesswork. Also it's only recently that late onset T1 is recognised something which my 'diabetes' GP didn't understand.