Feeling so deflated

[maine1965]

Hiya All, I’m really upset to be honest. I went to my diabetic annual review expecting for it to be confirmed that I’m in remission… bloods 44. I read the diabetes uk leaflet and it says under 48 and not on medication for over 3 months then in remission. I was even given a copy of the booklet which says the same… but I was told by the nurse remission has to be 41. I have worked so hard and still am… to be fair I’m fuming about it and angry!

 

[KennyA]

Hiya All, I’m really upset to be honest. I went to my diabetic annual review expecting for it to be confirmed that I’m in remission… bloods 44. I read the diabetes uk leaflet and it says under 48 and not on medication for over 3 months then in remission. I was even given a copy of the booklet which says the same… but I was told by the nurse remission has to be 41. I have worked so hard and still am… to be fair I’m fuming about it and angry!

Hi maine 1965.

44 isn't a bad result - I think you've come down quite a bit, haven't you? There's an allowable 5% error in A1c testing so it could be a touch lower (or higher, of course). Clearly you're doing something right.

As far as I know there is no single accepted definition of remission. My practice applied a definition to me that said (in effect) that remission was "one full calendar year with no HbA1c results above 42 while taking no glucose-lowering medication during that time". Elsewhere others are being told that a single HbA1c below 48 is remission, medication status doesn't matter.

Thing is, apart from the disappointment of the test score - are things improving and are you feeling better?

 

[Resurgam]

Hiya All, I’m really upset to be honest. I went to my diabetic annual review expecting for it to be confirmed that I’m in remission… bloods 44. I read the diabetes uk leaflet and it says under 48 and not on medication for over 3 months then in remission. I was even given a copy of the booklet which says the same… but I was told by the nurse remission has to be 41. I have worked so hard and still am… to be fair I’m fuming about it and angry!

Remission really is such a novel idea that there are differing opinions about it, and a lot is down to the individual surgery or even people within them.
The good thing, though, is that 44 is definitely not in the diabetic range, and is very close to the top end of normal.

I know how powerful numbers can be - I get very twitchy if someone seems to be wanting to weigh or measure me after decades of it being the start of verbal abuse, and when my Hba1c went down to 47 at the first retest and 41 at 6 months the significance given to those numbers was powerful affirmation of my getting it right. After half a century of being told I was wrong - I hope you forgive my irrepressible glee.
Those results were like having engine failure and finding it possible to glide in for a perfect landing.
I can only advise assessment of carb intake, testing after meals, even a bit more exercise, as I am entirely unaware of just what path you have travelled to get where you are now. You were, obviously, fully diabetic, but now are no longer. Don't blow it now you are so near to normal numbers.

 

[maine1965]

Hi maine 1965.

44 isn't a bad result - I think you've come down quite a bit, haven't you? There's an allowable 5% error in A1c testing so it could be a touch lower (or higher, of course). Clearly you're doing something right.

As far as I know there is no single accepted definition of remission. My practice applied a definition to me that said (in effect) that remission was "one full calendar year with no HbA1c results above 42 while taking no glucose-lowering medication during that time". Elsewhere others are being told that a single HbA1c below 48 is remission, medication status doesn't matter.

Thing is, apart from the disappointment of the test score - are things improving and are you feeling better?

Hiya kenny

Hi maine 1965.

44 isn't a bad result - I think you've come down quite a bit, haven't you? There's an allowable 5% error in A1c testing so it could be a touch lower (or higher, of course). Clearly you're doing something right.

As far as I know there is no single accepted definition of remission. My practice applied a definition to me that said (in effect) that remission was "one full calendar year with no HbA1c results above 42 while taking no glucose-lowering medication during that time". Elsewhere others are being told that a single HbA1c below 48 is remission, medication status doesn't matter.

Thing is, apart from the disappointment of the test score - are things improving and are you feeling better?

hiya Kenny, I’m still seething but I’m calming down and getting used to the fact. The nurse did say that I will probably be in remission in a few weeks…I said what if I’m one of the ones who can’t.. she said you definitely will.. she pointed out on my last yr review I was 63 and now 44… really I can’t complain I’m off meds for last 4 months too. I haven’t faltered in 7 months and almost carbless..it frustrating Kenny it really is.

 

[maine1965]

Remission really is such a novel idea that there are differing opinions about it, and a lot is down to the individual surgery or even people within them.
The good thing, though, is that 44 is definitely not in the diabetic range, and is very close to the top end of normal.

I know how powerful numbers can be - I get very twitchy if someone seems to be wanting to weigh or measure me after decades of it being the start of verbal abuse, and when my Hba1c went down to 47 at the first retest and 41 at 6 months the significance given to those numbers was powerful affirmation of my getting it right. After half a century of being told I was wrong - I hope you forgive my irrepressible glee.
Those results were like having engine failure and finding it possible to glide in for a perfect landing.
I can only advise assessment of carb intake, testing after meals, even a bit more exercise, as I am entirely unaware of just what path you have travelled to get where you are now. You were, obviously, fully diabetic, but now are no longer. Don't blow it now you are so near to normal numbers.

Hiya Resurgam, it is so frustrating but I know I will get there… it could have happened earlier if only I knew then the way yrs before… well done on your achievements on getting and keeping your goal. I’m not going to say I’ve been blown out of the water because from 68 last yr I am now 44 and well at the bottom end of pre diabetes.. I WILL get there I know this… yes you’ve guessed it I was beyond full diabetic at the reading of 68 last yr…so I’m not going to knock myself or deflect from getting remission… I can do it!!

 

[ianf0ster]

Hi @maine1965 Most T2's would be overjoyed to have an HbA1C as low as you. But this is something we have to live with, there is remission but no cure. So the most important thing is to make your lifestyle as healthy and sustainable for you as possible. It's only that combination that matters. Otherwise we are like those yoyo dieters who have bragging rights about how much weight they lost, but then can't sustain the changes needed to maintain it and so put it all back on again.

If the best sustainable HbA1C for you is 44, so be it. There are thousands who have a worse level but aren't aware of it. 44 is one heck of a lot better than 68, and if you had not taken action it would probably be higher than that by now!

 

[KennyA]

Hiya kenny

hiya Kenny, I’m still seething but I’m calming down and getting used to the fact. The nurse did say that I will probably be in remission in a few weeks…I said what if I’m one of the ones who can’t.. she said you definitely will.. she pointed out on my last yr review I was 63 and now 44… really I can’t complain I’m off meds for last 4 months too. I haven’t faltered in 7 months and almost carbless..it frustrating Kenny it really is.

Of course it is - but you've dropped around 30% in a year which is some achievement. If you can achieve that sort of reduction I don't think anything will stop you decreasing it further. You may well be in normal range right now, given that the A1c looks back three months.

As a matter of interest, what were your fingerprick numbers looking like? Mine (when approaching remission levels) were forecasting a much lower A1c than I actually had - it's one reason I advise people not to "average" or use them as a prediction. The problem is that folks become disappointed with a good result, only because it's not as good as hoped for.

 

[maine1965]

Of course it is - but you've dropped around 30% in a year which is some achievement. If you can achieve that sort of reduction I don't think anything will stop you decreasing it further. You may well be in normal range right now, given that the A1c looks back three months.

As a matter of interest, what were your fingerprick numbers looking like? Mine (when approaching remission levels) were forecasting a much lower A1c than I actually had - it's one reason I advise people not to "average" or use them as a prediction. The problem is that folks become disappointed with a good result, only because it's not as good as hoped for.

I’m going to have to get a kit Kenny…. It’s not fair is it…I won’t come off the band wagon…I enjoy my lifestyle now far better than the one I had before.

 

[KennyA]

If you've got to 44 without fingerprick testing at all I am impressed.

 

[maine1965]

Hi @maine1965 Most T2's would be overjoyed to have an HbA1C as low as you. But this is something we have to live with, there is remission but no cure. So the most important thing is to make your lifestyle as healthy and sustainable for you as possible. It's only that combination that matters. Otherwise we are like those yoyo dieters who have bragging rights about how much weight they lost, but then can't sustain the changes needed to maintain it and so put it all back on again.

If the best sustainable HbA1C for you is 44, so be it. There are thousands who have a worse level but aren't aware of it. 44 is one heck of a lot better than 68, and if you had not taken action it would probably be higher than that by now!

The funny thing is Ian… I didn’t care before about the numbers or the dangers…
Was the one who ate all the cakes and carbs I wanted… I’d have probably been in big trouble by now the rate it was going…or dead… but all it took was a bad experience on the diabetic injection and the threat of insulin to change my course… strange how life changes isn’t it…

 

[maine1965]

If you've got to 44 without fingerprick testing at all I am impressed.

Im impressed but just not that impressed right now…I guess I’m more competitive than I thought .. I want 41 and I got 44 lol

 

[KennyA]

Im impressed but just not that impressed right now…I guess I’m more competitive than I thought .. I want 41 and I got 44 lol

You will do just fine. I bet you will be sub-40 next time.

 

[maine1965]

You will do just fine. I bet you will be sub-40 next time.

Last yrs and this yrs below Kenny… actually 11 months apart