Should all diabetics have a GADA test at first diagnosis

[JohnJ]

I was 45 when diagnosed as diabetic and told you are type 2 or perhaps 1.5 (LADA), both wrong as discovered after a 20 year battle with levels, until I caught COVID and was tested for everything in hospital, to be told I am Type 1.

NHS acknowledge that 5% of diabetics are misdiagnosed as type 2 when in fact they are type 1! Many surgeries assume if not diagnosed by 40ish you must be type 2.

I think EVERY person diagnosed as a diabetic should have a Glutamic acid decarboxylase autoantibodies (GADA) blood test by default.

Should this be a Poll?

Thanks
John

 

[AndBreathe]

I was 45 when diagnosed as diabetic and told you are type 2 or perhaps 1.5 (LADA), both wrong as discovered after a 20 year battle with levels, until I caught COVID and was tested for everything in hospital, to be told I am Type 1.

NHS acknowledge that 5% of diabetics are misdiagnosed as type 2 when in fact they are type 1! Many surgeries assume if not diagnosed by 40ish you must be type 2.

I think EVERY person diagnosed as a diabetic should have a Glutamic acid decarboxylase autoantibodies (GADA) blood test by default.

Should this be a Poll?

Thanks
John

JohnJ, I think a GAD test could be useful at diagnosis, however a GAD negative does not rule out T1, although GAD positive rules it in. There is a decent percentage of T1s (can't recall the number, sorry) who are T1, but GAD negative.

Frankly, T2 is the diagnostic bucket for those in adulthood, not in or nearing DKA, it seems.

 

[Oldvatr]

In an ideal world - Yes! In the current reality - the phrase "Fat Chance" comes to mind. I addition to the point made by AndBreathe, I will add that there are two tests needed , a GAD test, and a c-peptide test which measures pancreas insulin production. One without the other is not conclusive.

there are other markers that need to be considered as well - sudden unexplained weight loss, DKA with high ketone levels, consistent BGL levels in the 20's and above. The task confronting GP's is not cut and dried, since many T1D are still outputting insulin as the pancreas fails (honeymoon period) and conversly, many T2D have failing pancreas due to beta cell burnout which is also not a simple on.off switch. the marker of T2D is hyperinsulinemia, which is why the c-pep test is so important. But these tasts are not simple yes/no tests, and vary from lab to lab. They are also not cheap, although the c-pep has undergone a revamp to make it a bit more affordable.

also, the c-pep test is BMI sensitive, and TOFI tend to be the ones most likely to get a misdiagnosis especially if young.

 

[barrym]

For my benefit, why does it matter?

I ask the question because I was diagnosed by my GP, who is a good chap in most respects but not necessarily a diabetes specialist. He passed me on to a practice nurse who looked after diabetes, just non injecting ones! After a while of NOT managing I was passed on to an Endo who got a grip of a treatment plan. I did get a GAD test but as mentioned above it was negative. No C-pep though.

Apart from some perceived fault apportionment by some people if you are T2, which I wanted to be able to contradict, what difference is there in a label? You have to treat it with whatever works.

That said. I do wear my T1 badge with honour - just wish I didn't have to .

 

[JohnJ]

JohnJ, I think a GAD test could be useful at diagnosis, however a GAD negative does not rule out T1, although GAD positive rules it in. There is a decent percentage of T1s (can't recall the number, sorry) who are T1, but GAD negative.

Frankly, T2 is the diagnostic bucket for those in adulthood, not in or nearing DKA, it seems.

Sorry, perhaps I should have explained more? My point iwas to rule out Type 2, if you have diabetic antibodies then you are not not Type 2 but many of the initial symptoms are common between both 1 and 2.

Seriously – to be wrongly diagnosed is lethal! Every organ is damaged in my case. I can only comment on my own experience but I can't be alone!

The full blood test covers 4 level tests.

Because of my own personal wrong diagnosis by my previous diabetic team, this has caused major body damage, I became a qualified professional in Diabetic Management because of this and as you say correctly there are many variables within test results, correct full blood tests covers at least 4 different tests.

At my last count there were 10 types of diabetes!

My point is that the errors made by general questions by GPs; Family history, your weight, lifestyle... instead of medical tests. In essence they look at you. “Like a Carry On film, "you're A1’. It should be based on a full scan with blood rests.

Diabetes is of course an ongoing issue, I read the other day that type 1 is caused (could be) by a virus and not genetic?

In my case not genetic...

 

[MattInUSA]

Apart from some perceived fault apportionment by some people if you are T2, which I wanted to be able to contradict, what difference is there in a label? You have to treat it with whatever works.

Lifestyle factors I suppose. If you're a type 2 and highly insulin resistant or have excessive pancreatic fat, there's things you can try (lose weight, exercise, reduce inflammation). If you're a type 1, doing all of those things is still not a bad idea, but excellent insulin sensitivity means nothing if you have no insulin. Of course for some people the label isn't terribly important, they'll manage however they have to regardless, but I imagine it's maddening to get a Type 2 diagnosis and the typical advice when you may already be doing those things and the real diagnosis should be a Type 1 or 1.5 with entirely different treatment (namely exogenous insulin and possibly nothing else if you're already insulin sensitive).

 

[JohnJ]

What are you saying?

 

[MattInUSA]

What are you saying?

I believe the label is useful rather than just treating whatever it is with whatever works. The label can decide the treatment.

 

[HSSS]

For my benefit, why does it matter?

I ask the question because I was diagnosed by my GP, who is a good chap in most respects but not necessarily a diabetes specialist. He passed me on to a practice nurse who looked after diabetes, just non injecting ones! After a while of NOT managing I was passed on to an Endo who got a grip of a treatment plan. I did get a GAD test but as mentioned above it was negative. No C-pep though.

Apart from some perceived fault apportionment by some people if you are T2, which I wanted to be able to contradict, what difference is there in a label? You have to treat it with whatever works.

That said. I do wear my T1 badge with honour - just wish I didn't have to .

It matters because treatment options are different. If you have an excess of insulin and are resistant to it (type 2) then lifestyle and dietary options can reduce that resistance and restore at least some sensitivity. Adding yet more insulin in this situation will make things worse in the long term (even whilst it lowers bgl in the short term) as the excess insulin is at least part of the cause of insulin resistance.

If you are type 1 then no amount of lifestyle changes will change your need for insulin. Sensitivity isn’t the issue. And in the UK being type 1 gives you access to tech to help manage that isn’t available to type 2. Not to mention type 2 is treated as second class diabetes in many locations as well as the stigma perpetuated even by media, medical staff and diabetics themselves in some cases.

 

[Lamont D]

I have always maintained that it is a generalisation of differing conditions under the umbrella of diabetes (endocrinology)
The treatment regime is a more sensible logical conclusion to our differences than a one size fits all at initial diagnosis.
But I would add that along with the initial bloods, which includes a full blood panel, along with c-peptide, GAD and insulin levels, which doesn't always come through with a c-peptide test. High insulin levels is common in prediabetes, which leads to either T2 and/or hyperinsulinimia, common enough to cause insulin resistance, one of the prime factors in T2 and many other metabolic conditions.
There are many causes and symptoms of all types of endocrine health. It is so individual.
Having a rare condition and deciding, my best balance of treatment, with the knowledge I gained from the tests, I did eventually go through, then my experience with my testing regime and my endocrinologist who was brilliant. I got control. And my health improved.
I must add that the pandemic caused mental illness, causing a few blips in my treatment, and lots of counselling to help me get healthy again!

 

[barrym]

@MattInUSA, @HSSS

I didn't explain myself very well there. I agree with you that the resulting treatment is what counts, but doing it the wrong way round, ie T1 treatment first, would disguise the problem. Clearly health style choice should be a recommendation what ever your condition, and that was what I got. In my case I accepted the need to change diet and exercise more even though I was neither overweight nor unfit. I did this to excess initially, until one of the DSNs transitioned me to insulin and referred me to an endo. She immediately, now with evidence of sorts, said she thought i was T1.

It was post this and whist having cancer treatment I asked for a GAD test which as I said turned out to be negative.

C'est la vie, all under a level of control with the all too frequent inexplicable lows or highs. Just the normal for a diabetic eh?

 

[AndBreathe]

Sorry, perhaps I should have explained more? My point iwas to rule out Type 2, if you have diabetic antibodies then you are not not Type 2 but many of the initial symptoms are common between both 1 and 2.

Seriously – to be wrongly diagnosed is lethal! Every organ is damaged in my case. I can only comment on my own experience but I can't be alone!

The full blood test covers 4 level tests.

Because of my own personal wrong diagnosis by my previous diabetic team, this has caused major body damage, I became a qualified professional in Diabetic Management because of this and as you say correctly there are many variables within test results, correct full blood tests covers at least 4 different tests.

At my last count there were 10 types of diabetes!

My point is that the errors made by general questions by GPs; Family history, your weight, lifestyle... instead of medical tests. In essence they look at you. “Like a Carry On film, "you're A1’. It should be based on a full scan with blood rests.

Diabetes is of course an ongoing issue, I read the other day that type 1 is caused (could be) by a virus and not genetic?

In my case not genetic...

I think the issue is that, allegedly, 90% of those diagnosed with diabetes have T2. The balance 10% will include those immediately diagnosed T1, gestational, Steroid induced/T3c etc, so the wider testing would be a catch-all for a modest number.

Now, please, PLEASE don't think I am saying that modest balance is unimportant. Of course, it is important, but no system is ideal. Were it ideal, every person presenting with a bit of a cough would be referred for a high resolution CT scan, or those with tummy ache, an MRI, with contrast.

I also know that CT and MRI are more costly that most blood work, but in my experience of process improvement, per se, and statistics, the target is usually somewhere on 80/20. As I say, not ideal, but with SO many issues facing our health systems, and the public purse in general, unless we move over onto an insured system, we will not achieve as you wish.

Having lived in places where insurance, or deep pockets are the answer to medical bills, I know where I will take my compromises. (All of that said, in the spirit of full disclosure, I have had private consultations where I have felt the NHS response was not enough for my needs and wants.)

 

[fbirder]

In my mid 50s I was diagnosed with diabetes T2. A few years later I was diagnosed with Idiopathic Axonal Neuropathy. I was re-reading the letter my London neurologist sent to my local neurologist (who was stumped for a diagnosis. This thread reminded me of a sentence in that letter…

”I do not think the GAD antibodies are relevant. These probably go along with his diabetes, albeit late onset.”

I'm going to have to dig through all my records for about that time to see exactly what the GAD result was. If, as I suspect, it was positive does that mean I do not have Type 2? Is it more likely to be LADA?

 

[IanA123]

Sorry, perhaps I should have explained more? My point iwas to rule out Type 2, if you have diabetic antibodies then you are not not Type 2 but many of the initial symptoms are common between both 1 and 2.

Seriously – to be wrongly diagnosed is lethal! Every organ is damaged in my case. I can only comment on my own experience but I can't be alone!

The full blood test covers 4 level tests.

Because of my own personal wrong diagnosis by my previous diabetic team, this has caused major body damage, I became a qualified professional in Diabetic Management because of this and as you say correctly there are many variables within test results, correct full blood tests covers at least 4 different tests.

At my last count there were 10 types of diabetes!

My point is that the errors made by general questions by GPs; Family history, your weight, lifestyle... instead of medical tests. In essence they look at you. “Like a Carry On film, "you're A1’. It should be based on a full scan with blood rests.

Diabetes is of course an ongoing issue, I read the other day that type 1 is caused (could be) by a virus and not genetic?

In my case not genetic...

Type 1 is autoimmune, same as coeliac disease. Body just attacks itself. I was 21 when diagnosed, bm in old values of 48. Sentbhome to await a diabetic nurse to visit and explain how to inject and test. 30mins that lasted, didn't see endocrinologist for 2yrs.

 

[Tapioca]

I was 45 when diagnosed as diabetic and told you are type 2 or perhaps 1.5 (LADA), both wrong as discovered after a 20 year battle with levels, until I caught COVID and was tested for everything in hospital, to be told I am Type 1.

NHS acknowledge that 5% of diabetics are misdiagnosed as type 2 when in fact they are type 1! Many surgeries assume if not diagnosed by 40ish you must be type 2.

I think EVERY person diagnosed as a diabetic should have a Glutamic acid decarboxylase autoantibodies (GADA) blood test by default.

Should this be a Poll?

Thanks
John

I've been diagnosed as Type 2 diabetic for the past 20 plus years, and still struggling with my HBA1C. At my last appt, I was asked if I've ever been tested for type 1, which to my knowledge, I haven't, and yet they haven't suggested I have one! What was the point of that?

 

[Glitterlady71]

I was 45 when diagnosed as diabetic and told you are type 2 or perhaps 1.5 (LADA), both wrong as discovered after a 20 year battle with levels, until I caught COVID and was tested for everything in hospital, to be told I am Type 1.

NHS acknowledge that 5% of diabetics are misdiagnosed as type 2 when in fact they are type 1! Many surgeries assume if not diagnosed by 40ish you must be type 2.

I think EVERY person diagnosed as a diabetic should have a Glutamic acid decarboxylase autoantibodies (GADA) blood test by default.

Should this be a Poll?

Thanks
John

Quite agree

 

[fbirder]

In my mid 50s I was diagnosed with diabetes T2. A few years later I was diagnosed with Idiopathic Axonal Neuropathy. I was re-reading the letter my London neurologist sent to my local neurologist (who was stumped for a diagnosis. This thread reminded me of a sentence in that letter…

”I do not think the GAD antibodies are relevant. These probably go along with his diabetes, albeit late onset.”

I'm going to have to dig through all my records for about that time to see exactly what the GAD result was. If, as I suspect, it was positive does that mean I do not have Type 2? Is it more likely to be LADA?

Looked through about 200 pages of data. GAD results, two of them, were both 5.0 U/mL (Range:0 - 5). So nothing to get excited about.

 

[JoolsSugar]

For my benefit, why does it matter?

I ask the question because I was diagnosed by my GP, who is a good chap in most respects but not necessarily a diabetes specialist. He passed me on to a practice nurse who looked after diabetes, just non injecting ones! After a while of NOT managing I was passed on to an Endo who got a grip of a treatment plan. I did get a GAD test but as mentioned above it was negative. No C-pep though.

Apart from some perceived fault apportionment by some people if you are T2, which I wanted to be able to contradict, what difference is there in a label? You have to treat it with whatever works.

That said. I do wear my T1 badge with honour - just wish I didn't have to .

Thank you, this comment:
Apart from some perceived fault apportionment by some people if you are T2
highlights the, 'oh you're type 2, you must have brought it on yourself' reaction.

My family has genetic T2, mother, all four uncles, 7 of 9 cousins, 4 of 6 great cousins (so far) all diagnosed with T2

My doctors surgery's diabetic specialist is someone who 'read a book about it' and knows less than me about the condition.
Diabetes seems to be the 'poor cousin' of health conditions, perhaps because of the perception of self infliction, or because medical professionals are not trained properly in diagnosis and treatment.
I've never had a GAD or C-pep test
HBA1C = 126 when I was diagnosed - with my family history I think this should have been noted on my files and a closer watch kept.

 

[MattInUSA]

It was post this and whist having cancer treatment I asked for a GAD test which as I said turned out to be negative.

So are you still in a grey zone without an official type 1 diagnosis, but are treating it as such? GAD testing is certainly not foolproof and can go from negative to positive over time. I would still hope that in combination with c-peptide, they would at least catch most cases of insulin-deficiency, no matter the reason. Of course type 2 can result in insulin deficiency over time as well, but catching it early enough would hopefully result in preventing that outcome by working on the insulin resistance and/or other lifestyle changes. I think the main thing is that if it's LADA or type 1, insulin can be provided right away, whereas a true type 2 with adequate insulin should focus on lifestyle changes (the LADAs and type 1s may need to make changes as well, they're not excluded from insulin resistance). I just don't like that a person can be misdiagnosed as a type 2 and do everything reasonably possible to control it over the course of years when all they need is a bit of insulin (it sounds like maybe you were in this situation at first?). The result is unnecessary stress and damage. Even relying on simply fasting glucose and A1C to diagnose ANY diabetes is flawed, imo. It can take years for one or the other to get out of range while post-prandial numbers can signal much sooner that there's a problem. I don't know the solution for that other than an annual OGTT or have someone do post-prandial finger sticks periodically.

 

[barrym]

So are you still in a grey zone without an official type 1 diagnosis, but are treating it as such? GAD testing is certainly not foolproof and can go from negative to positive over time. I would still hope that in combination with c-peptide, they would at least catch most cases of insulin-deficiency, no matter the reason. Of course type 2 can result in insulin deficiency over time as well, but catching it early enough would hopefully result in preventing that outcome by working on the insulin resistance and/or other lifestyle changes. I think the main thing is that if it's LADA or type 1, insulin can be provided right away, whereas a true type 2 with adequate insulin should focus on lifestyle changes (the LADAs and type 1s may need to make changes as well, they're not excluded from insulin resistance). I just don't like that a person can be misdiagnosed as a type 2 and do everything reasonably possible to control it over the course of years when all they need is a bit of insulin (it sounds like maybe you were in this situation at first?). The result is unnecessary stress and damage. Even relying on simply fasting glucose and A1C to diagnose ANY diabetes is flawed, imo. It can take years for one or the other to get out of range while post-prandial numbers can signal much sooner that there's a problem. I don't know the solution for that other than an annual OGTT or have someone do post-prandial finger sticks periodically.

A binary diagnosis is not really possible with a honeymoon periods I assume, and the treatment may seem correct at the initial stage. So I do have some sympathy with the conundrum.