Typing and "testing"

LooperCat · Jul 23, 2019

I don’t think they were even calling it type one or two (let alone any of the others) when I was diagnosed in 1998 - you were either an insulin dependent diabetic or a non insulin dependent diabetic. As long as the treatment keeps your blood sugars stable, I personally don’t care what they call it. But obviously you do, so you need to start rattling cages with your healthcare team to get to the bottom of it. As has already been suggested, you might get more testing if you have other autoimmune issues, as they tend to go together.

LooperCat · Jul 23, 2019

Daibell said:
As a side issue I will add something I've raised before that viruses can also result in beta cell death with exactly the same outcome and treatment. Whether it's called T1 or yet another type is up to the 'experts' but it's not T2 and I think it makes sense to include that cause for T1.

That’s what they think caused mine. Gastro virus hiding in my pancreas, so my immune systems napalmed the lot...

Kerri5981 · Jul 23, 2019

Mel dCP said:
I don’t think they were even calling it type one or two (let alone any of the others) when I was diagnosed in 1998 - you were either an insulin dependent diabetic or a non insulin dependent diabetic. As long as the treatment keeps your blood sugars stable, I personally don’t care what they call it. But obviously you do, so you need to start rattling cages with your healthcare team to get to the bottom of it. As has already been suggested, you might get more testing if you have other autoimmune issues, as they tend to go together.

I have known about Type 1/2 my whole life
It's only been in the last few years that the so-called experts have been discussing the extra Types(1.5, 3....)
There is a different medical background to either one and it will affect my children and my grandchildren too

Kerri5981 · Jul 23, 2019

Mel dCP said:
That’s what they think caused mine. Gastro virus hiding in my pancreas, so my immune systems napalmed the lot...

I'm sorry
They still don't know what caused mine but I don't think they are that bothered to find out as I have no cancer markers in my blood tests

Diakat · Jul 23, 2019

@Kerri5981 can you ask your GP for a referral to a hospital clinic? They have access to more tests and mental health support.

LooperCat · Jul 23, 2019

Kerri5981 said:
I'm sorry
They still don't know what caused mine but I don't think they are that bothered to find out as I have no cancer markers in my blood tests

Sometimes there just are no answers, as frustrating as that is. Not what you want to hear, I know. But are your current treatments doing the job? If they’re not, then it’s time to step it up a bit and put the pressure on with your team - maybe try some different insulins. Would having a Libre sensor take the pressure off you testing so much, perhaps?

Kerri5981 · Jul 23, 2019

Diakat said:
@Kerri5981 can you ask your GP for a referral to a hospital clinic? They have access to more tests and mental health support.

It is both teams that are refusing to do the test

Kerri5981 · Jul 23, 2019

Mel dCP said:
Sometimes there just are no answers, as frustrating as that is. Not what you want to hear, I know. But are your current treatments doing the job? If they’re not, then it’s time to step it up a bit and put the pressure on with your team - maybe try some different insulins. Would having a Libre sensor take the pressure off you testing so much, perhaps?

Its not really the testing that bothers me more the lack of bother in my doc's

DCUKMod · Jul 23, 2019

Kerri5981 said:
I have known about Type 1/2 my whole life
It's only been in the last few years that the so-called experts have been discussing the extra Types(1.5, 3....)
There is a different medical background to either one and it will affect my children and my grandchildren too

To be honest, Kerri, if your family mention you have diabetes, it will likely be taken into account, depending on what were to ail them, taking them to the medics.

My family is littered with autoimmune conditions, on both sides of the family, with my late parents having a handful between them. An Endo I was consulting was very curious (declaring I'd definitely have something) to see what he could fine.

I have nothing. Auto-immune conditions end to run in families, but it isn't a certainty.

Kerri5981 · Jul 24, 2019

helensaramay said:
My type 1 diabetes was diagnosed in by mid-30s. No test. No history of diabetes in my family. No other autoimmune diseases.
Dealing with the shock, testing and insulin was more than enough for me to worry about so I took their diagnosis at face value and did my best to get back on with life.

@Kerri5981 you have mentioned a concern about your children and grandchildren. Can you elaborate on that?
If we understand that concern more, perhaps we can assist or alleviate your fears.

pretty self-explanatory really I thought
If I can develop it it increases their risk

porl69 · Jul 24, 2019

@Kerri5981 how are your bloods at the moment? Are they at a decent level with what you are currently doing medicine wise? Type 1/type 2 on insulin/Lada......does it matter as long as you are well controlled?
Diagnosed 48 years ago when you was either diabetic on insulin OR diabetic tablet/diet controlled. I have 2 sons, 30 years old and 25 years old, neither have diabetes. I do test their bloods whenever I see them

ert · Jul 24, 2019

I was diagnosed as type 1 and referred straight away due to BMI 22, age, stomach flu, blood sugars over 20 mmol/L on a glucometer. I had blood tests and my c-peptide was less than 0.2 nmol/L (0.15) which is the cut off marker for type1 on diagnosis (not years later) and they found GAD antibodies.

If you are after a referral to a specialist, you need to be a diagnostic uncertainty or high-risk area. The GP's follow a guideline and will consider a specialist opinion on your age, BMI, family history of immune disease. If your BMI is greater than 25 but your age is less than 25 they many consider monogenic/atypical/pancreatic diabetes.

Here is said pathway: https://www.england.nhs.uk/rightcar...40/2018/07/nhs-rightcare-pathway-diabetes.pdf
If you don't fit into this pathway, you can see a specialist privately.

If your c-peptide is greater than 0.2 nmol/L you can clearly rule out type 1 but not LADA. Good luck. I hope you can find some answers.

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