Type 2 Diagnosis Confirmation + Remission?

[Adamz]

Hi All, Great forum and long may it continue, I have two questions regarding Diagnosis and Remission - this is specially regarding Type 2 Diabetes.

1. Diagnosis - In Scotland it appears that to get diagnosed with Diabetes the GP will refer you for blood tests and if this returns a HbA1c value >47 then you are diagnosed at Diabetic. Im sure I have seen posts from other posters where it suggests that after the doctor referred test a further follow up test is carried out at a hospital within a few weeks to confirm diabetes diagnosis. Does diagnosis vary GP to GP or does it differ Scotland v England?

2. Remission - I have also seen posts where it suggests that if HbA1c value is below pre diabetes range <42 for several tests then the Diabetes flag is taken off/Diabetes management via primary care may be stopped if not on medication, however my doctor states that diabetes is a life long condition and it can never be 'removed or unflagged' as an active condition for a patient. Is this also correct throughout the UK?

 

[Lamont D]

1. It is common for a second hba1c test to confirm the first. As always in UK, it is postcode lottery and devolution and which healthcare association is in your area.
2. Yes, you can be classed as in remission but the diabetic register still needs to be updated as not, to be able to get access to free prescriptions if needed.
remission is achievable but it is only a label, in that you have achieved good control of your diabetes.

Best wishes

 

[AndBreathe]

Hi All, Great forum and long may it continue, I have two questions regarding Diagnosis and Remission - this is specially regarding Type 2 Diabetes.

1. Diagnosis - In Scotland it appears that to get diagnosed with Diabetes the GP will refer you for blood tests and if this returns a HbA1c value >47 then you are diagnosed at Diabetic. Im sure I have seen posts from other posters where it suggests that after the doctor referred test a further follow up test is carried out at a hospital within a few weeks to confirm diabetes diagnosis. Does diagnosis vary GP to GP or does it differ Scotland v England?

2. Remission - I have also seen posts where it suggests that if HbA1c value is below pre diabetes range <42 for several tests then the Diabetes flag is taken off/Diabetes management via primary care may be stopped if not on medication, however my doctor states that diabetes is a life long condition and it can never be 'removed or unflagged' as an active condition for a patient. Is this also correct throughout the UK?

Adamz, the second test is more common if the initial one is near the diagnostic threshold. There is also the "option" to diagnose based on a very high single reading, but these days the gold standard for diagnosis for T2 is the A1c test.

In terms of remission, this is still a relatively new concept and many GPs don't subscribe to it.

In terms of flags being removed, the diagnosis cannot be removed because that is a matter of historic fact. The flag can be changed to reflect a new status. In my own case, I am now flagged as "Diabetes Resolved", but I do still have an annual (at least) A1c and diabetic eye screening.

The more commonly used flag is "Diabetes in Remission", with some feeling "Diabetes Resolved" is best saved for gestational diabetes that resolves itself once the pregnancy ends.

 

[chrisjohnh]

Hi All, Great forum and long may it continue, I have two questions regarding Diagnosis and Remission - this is specially regarding Type 2 Diabetes.

1. Diagnosis - In Scotland it appears that to get diagnosed with Diabetes the GP will refer you for blood tests and if this returns a HbA1c value >47 then you are diagnosed at Diabetic. Im sure I have seen posts from other posters where it suggests that after the doctor referred test a further follow up test is carried out at a hospital within a few weeks to confirm diabetes diagnosis. Does diagnosis vary GP to GP or does it differ Scotland v England?

2. Remission - I have also seen posts where it suggests that if HbA1c value is below pre diabetes range <42 for several tests then the Diabetes flag is taken off/Diabetes management via primary care may be stopped if not on medication, however my doctor states that diabetes is a life long condition and it can never be 'removed or unflagged' as an active condition for a patient. Is this also correct throughout the UK?

My understanding is that at least in England the “remission” threshold for flagging purposes is <48 rather than <42. I was flagged by my surgery on that basis anyway. The variable use of the word remission for T2 is unfortunate, I believe. If one has managed to achieve sustained low numbers then by definition that is “good control”, but I think remission should denote something a bit stronger than that, e.g. having demonstrably eliminated some fundamental pathological factor in T2 such as excess fat in the pancreas or liver. But most of us don’t have our own MRI scanners to show how our insides have responded to our efforts - we have only less direct indicators to go on. Well, one could say what does it matter while one has “good control”? It would not matter to me were it not for the anxiety that even if I sustain <42 for some years, some nasty little blob of fat still in the pancreas will eventually cause it to pack up. But what will be, will be … good luck with your own journey Adamz.

 

[AndBreathe]

My understanding is that at least in England the “remission” threshold for flagging purposes is <48 rather than <42. I was flagged by my surgery on that basis anyway. The variable use of the word remission for T2 is unfortunate, I believe. If one has managed to achieve sustained low numbers then by definition that is “good control”, but I think remission should denote something a bit stronger than that, e.g. having demonstrably eliminated some fundamental pathological factor in T2 such as excess fat in the pancreas or liver. But most of us don’t have our own MRI scanners to show how our insides have responded to our efforts - we have only less direct indicators to go on. Well, one could say what does it matter while one has “good control”? It would not matter to me were it not for the anxiety that even if I sustain <42 for some years, some nasty little blob of fat still in the pancreas will eventually cause it to pack up. But what will be, will be … good luck with your own journey Adamz.

How can you say that some little blob of fat will eventually cause your pancreas to pack up? In my view, you can't.

In my own view, I can never know that, so it's probably best I do whatever I can to maintain likely low levels of fat in and around my organs. I mean a big red bus could wipe me out tomorrow (if we had red busses around here), or some other random ailment come along from left field.

In my world you get on with living your best life, whilst keeping e weather eye on the unwanted bits in our universe. You know, a bit like keeping tracks on the black sheep in the family. I prefer a life of optimism.

 

[chrisjohnh]

How can you say that some little blob of fat will eventually cause your pancreas to pack up? In my view, you can't.

In my own view, I can never know that, so it's probably best I do whatever I can to maintain likely low levels of fat in and around my organs. I mean a big red bus could wipe me out tomorrow (if we had red busses around here), or some other random ailment come along from left field.

In my world you get on with living your best life, whilst keeping e weather eye on the unwanted bits in our universe. You know, a bit like keeping tracks on the black sheep in the family. I prefer a life of optimism.

You’re right of course. It is just so curious that some who have maintained excellent control for years start seeing it slip for no discernible reason. This is what happened to my paternal grandmother after a decade of low carb control. Could she have done more? Dunno. But you’re right. Perhaps Putin is more to worry about than the hypothetical blob of fat!

 

[AndBreathe]

You’re right of course. It is just so curious that some who have maintained excellent control for years start seeing it slip for no discernible reason. This is what happened to my paternal grandmother after a decade of low carb control. Could she have done more? Dunno. But you’re right. Perhaps Putin is more to worry about than the hypothetical blob of fat!

I think we sometimes have to consider that as we get old some bits get a bit worn out, and sometimes other conditions get in on the act. There are other conditions requiring different styles of eating, or drug regimes which can play a part in an altering biochemistry. Sometimes, in the context of the bigger picture, T2 is the least of an individual's worries.

Very early on in my T2 diagnosis I got mightily fed up of everything from A-Z being blamed on diabetes, to the extent I once asked my GP what her thought process would be had I not had an historic diagnosis of T2. At that stage I had been in remission (or whatever you choose to call it) for a number of years. It was at that point that she modified my T2 flag.

 

[chrisjohnh]

I think we sometimes have to consider that as we get old some bits get a bit worn out, and sometimes other conditions get in on the act. There are other conditions requiring different styles of eating, or drug regimes which can play a part in an altering biochemistry. Sometimes, in the context of the bigger picture, T2 is the least of an individual's worries.

Very early on in my T2 diagnosis I got mightily fed up of everything from A-Z being blamed on diabetes, to the extent I once asked my GP what her thought process would be had I not had an historic diagnosis of T2. At that stage I had been in remission (or whatever you choose to call it) for a number of years. It was at that point that she modified my T2 flag.

Yes, at 75 there are lots of bits that could be going to pot, including the brain cells worrying among themselves about how long they will go on living to maintain the worrying! I must aim to be less consumed by it all in 2023 to preserve sanity. Happy New Year to all!

 

[Adamz]

Firstly many thanks for all the replies - much appreciated.

I do find that remission for T2 diabetes has quite a few different meanings with the main one seeming to be hba1c <48, however I do see how this isn't foolproof as a hardcore temporary diet could drop things into remission quite quickly. In my opinion and I agree with chrisjohnc in that a true remission/cure would be if it can be proven that the pancreas is 'rebooted' and producing insulin cells as required.

And this herein lies the problem with T2 management in the UK - there is no glucose tolerance/MRI scan for T2 diabetics to utilise within the NHS in order to confirm if they have been cured of diabetes or not - and for some it may be difficult to accept that no matter what they do - once a diabetic always a diabetic even if the science may show otherwise. The Direct study seems to suggest that for some - insulin production can restart - and I wonder whether T2 management and thereafter remission management will be wildly different in a few years once NHS has caught up with Direct/Retune studies?

 

[Lamont D]

Firstly many thanks for all the replies - much appreciated.

I do find that remission for T2 diabetes has quite a few different meanings with the main one seeming to be hba1c <48, however I do see how this isn't foolproof as a hardcore temporary diet could drop things into remission quite quickly. In my opinion and I agree with chrisjohnc in that a true remission/cure would be if it can be proven that the pancreas is 'rebooted' and producing insulin cells as required.

And this herein lies the problem with T2 management in the UK - there is no glucose tolerance/MRI scan for T2 diabetics to utilise within the NHS in order to confirm if they have been cured of diabetes or not - and for some it may be difficult to accept that no matter what they do - once a diabetic always a diabetic even if the science may show otherwise. The Direct study seems to suggest that for some - insulin production can restart - and I wonder whether T2 management and thereafter remission management will be wildly different in a few years once NHS has caught up with Direct/Retune studies?

I agree with a lot you are saying, however, it is beyond our bodies to not be susceptible to be able to sustain an hba1c levels whilst getting older.
you are missing the most obviousness of most T2 diabetes in most, not all, which is insulin. Insulin and hormonal response, insulin resistance, high levels of circulating insulin, that is not used, hyperinsulinimia in some.
And it is very rarely tested for..
When doctors suspect prediabetes, and a test confirms. The insulin levels should be tested. The benefits of knowing is critical in determining treatment. And a lot of patients foregone diagnosis of T2 could be prevented.

We treat people after messing about with blood tests and don't have a system for prevention. We have annual tests, but none before diagnosis.

It's madness!
But typical of this country!

 

[Ronancastled]

Firstly many thanks for all the replies - much appreciated.

I do find that remission for T2 diabetes has quite a few different meanings with the main one seeming to be hba1c <48, however I do see how this isn't foolproof as a hardcore temporary diet could drop things into remission quite quickly. In my opinion and I agree with chrisjohnc in that a true remission/cure would be if it can be proven that the pancreas is 'rebooted' and producing insulin cells as required.

And this herein lies the problem with T2 management in the UK - there is no glucose tolerance/MRI scan for T2 diabetics to utilise within the NHS in order to confirm if they have been cured of diabetes or not - and for some it may be difficult to accept that no matter what they do - once a diabetic always a diabetic even if the science may show otherwise. The Direct study seems to suggest that for some - insulin production can restart - and I wonder whether T2 management and thereafter remission management will be wildly different in a few years once NHS has caught up with Direct/Retune studies?

But herein lies the quandary, you can eat carbs again, rejoice . . . but where does that road lead back to.
Call it cure/reversal/remission/resolved . . . all comforting terms but know that you posses the trigger & someday, despite your best efforts, the angry dog might raise it's head.
I have however encountered many individuals online that have kept their A1C <48(6.5%) for decades through weight loss & low carb eating, if you're looking for hope it's out there.

 

[KennyA]

Firstly many thanks for all the replies - much appreciated.

I do find that remission for T2 diabetes has quite a few different meanings with the main one seeming to be hba1c <48, however I do see how this isn't foolproof as a hardcore temporary diet could drop things into remission quite quickly. In my opinion and I agree with chrisjohnc in that a true remission/cure would be if it can be proven that the pancreas is 'rebooted' and producing insulin cells as required.

And this herein lies the problem with T2 management in the UK - there is no glucose tolerance/MRI scan for T2 diabetics to utilise within the NHS in order to confirm if they have been cured of diabetes or not - and for some it may be difficult to accept that no matter what they do - once a diabetic always a diabetic even if the science may show otherwise. The Direct study seems to suggest that for some - insulin production can restart - and I wonder whether T2 management and thereafter remission management will be wildly different in a few years once NHS has caught up with Direct/Retune studies?

My view is that the "48" A1c measure, while it has become important, should not be used as an indicator of anything as far as an individual is concerned. A reading of 48 is simply a figure agreed on by medical specialists worldwide (around 2008, iirc) as the point at which they would all agree that a diagnosis of T2 diabetes was justified. The reason 48 was selected (according to Bilous and Donnelly's Handbook of Diabetes) is that diabetic retinopathy was rare (therefore not unknown) at BG levels below this. In other words the system is geared only to intervene once damage from high BG becomes more likely.

Unfortunately using an A1c of 48 is now widely taken to mean by the health care systems in the UK that only an A1c of 48 and above justifies a diagnosis of T2 diabetes. I had many painful and distressing diabetic symptoms for around ten years long before my A1c reached 48 - I was assured by several medical practitioners that I wasn't diabetic, because my BG levels were lower than 48. I'm not alone in having this experience.

Point I'm making is that BG levels of less than 48 mean exactly nothing for an individual's health other than the reading itself: it doesn't imply wellness. It certainly doesn't imply not having T2 diabetic symptoms/diabetes.

T2 is normally viewed as being the result of insulin resistance in the first place - plenty of insulin is being produced but it is not having the required effect. I don't think that describing remission as the "pancreas being rebooted and producing insulin cells" or that "for some, insulin production can restart" is at all accurate. It sounds like a possible confusion of T1 with T2.

Although I describe my own current state as being in remission, by this I mean that a) I am no longer experiencing diabetic symptoms (apart for a residual bit of neuropathy) and b) my BG is in the normal range and c) without medication. I would never use the word "cured". If I ate the way I used to eat (that is, the recommended "Eatwell Plate") I am fairly sure that my BGs would rise and I'd have the symptoms again.

 

[Adamz]

Fantastic insightful points by Lamont, Ronan and Kenny.

What confuses me is Dr Roy Taylor references reversal of diabetes and that pancreas/liver/beta cell function may go back to normal assuming maintenance of diet after early weight loss.

I have a question for all - it may not be hypothetical. I can see this being a very realistic scenario where some healthcare areas do a GP test first and then a hospital test say a month later.

If very early post diagnosis your BG and A1C reaches pre diabetes levels in the time from doctor test to hospital test - would you accept an offer from your GP to remove diabetes diagnosis and halt any further management of diabetes?

 

[Lamont D]

If the first test by the GP was prediabetic, which hospital test would be needed?

And no! It should not be removed.

 

[Adamz]

Sorry what I meant is that say 1st January your first test ordered by GP returns a A1C of 50 and by 1st February when Hospital carries out confirmation test your A1c goes down to 40.

 

[MrsA2]

If very early post diagnosis your BG and A1C reaches pre diabetes levels in the time from doctor test to hospital test - would you accept an offer from your GP to remove diabetes diagnosis and halt any further management of diabetes?

In my case by the time I got my second test (which was very delayed due to covid lockdown) I had got a meter and reduced my bg by eating low carb. I had lost weight as a secondary effect.
Because I was under the line the GP never officially diagnosed me, but I know from my reactions to eating carbs (and a prediabetes test 14 years earlier) that I am most definitely diabetic and that if I don't remain vigilant my bg will start rising again.
Just because I don't have an official label doesn't mean I can, or would, ignore my condition.
I am already partial sighted due to other reasons. I am not going to risk my remaining good eye.

 

[Adamz]

In my case by the time I got my second test (which was very delayed due to covid lockdown) I had got a meter and reduced my bg by eating low carb. I had lost weight as a secondary effect.
Because I was under the line the GP never officially diagnosed me, but I know from my reactions to eating carbs (and a prediabetes test 14 years earlier) that I am most definitely diabetic and that if I don't remain vigilant my bg will start rising again.
Just because I don't have an official label doesn't mean I can, or would, ignore my condition.
I am already partial sighted due to other reasons. I am not going to risk my remaining good eye.

Very interesting - so how are you managing it if the GP never diagnosed you officially - are you doing private A1C tests?

 

[MrsA2]

Very interesting - so how are you managing it if the GP never diagnosed you officially - are you doing private A1C tests?

After I complained to the practice (the first doctor didn't update the system, ), they have said I can have hba1c tests twice a year (but due to multiple cancellations on their part I've just had my first since last Match).
More of a concern is i can't get into the system for eye tests, computer keeps saying No, even though both my optician and consultant opthalmology surgeon have written to say I must.
My lovely surgeon is doing them for me undercover of follow up from my last surgery. Fingers crossed he never has to cross me off his list.
I think I get better service by taking control of my own diabetes than any GP or diabetes nurse ever could.
I do more learning, more research and am more up-to-date. I'm just not paid

 

[bulkbiker]

insulin production can restart

If you are a true insulin overproducing T2 then insulin production never stopped for you , your body was overrun with the stuff and it stopped working as it should. This is Taylor's (and many others) flaw in their theory.

 

[KennyA]

Fantastic insightful points by Lamont, Ronan and Kenny.

What confuses me is Dr Roy Taylor references reversal of diabetes and that pancreas/liver/beta cell function may go back to normal assuming maintenance of diet after early weight loss.

I have a question for all - it may not be hypothetical. I can see this being a very realistic scenario where some healthcare areas do a GP test first and then a hospital test say a month later.

If very early post diagnosis your BG and A1C reaches pre diabetes levels in the time from doctor test to hospital test - would you accept an offer from your GP to remove diabetes diagnosis and halt any further management of diabetes?

Well, many people write as if weight loss must precede normal metabolic function. In my case (and in many other histories on this forum) I went from a diabetic A1c (January) to a low-normal A1c (April) in four months, which implies I was somewhere in the normal range in February/March. Weight loss had started but I hadn't yet lost a significant amount. So for me keto eating produced normal BGs almost immediately, and continuing weight loss over the next three years, while maintaining my A1c at around the same level.

There are other sides to the question about whether it's better to be officially diagnosed or not. Being diagnosed allows an individual to have the regular check ups and tests (officially anyway, experiences may vary) but if you're testing and maintaining control this could be less valuable : however the diagnosis of itself has implications for things like life insurance. I found that at least some insurers have no understanding of remission, the difference between controlling your condition or not controlling it, in fact just about anything to do with T2. They do load your premium, however.