How do I know I am in Remission

[Aristotle_T]

We all talk about diabetes remission or reversal. I was pondering on what signs should we watch out for to identify one is in remission. Those in remission kindly share your experiences on this.

 

[Drummer]

It all depends on how your GP surgery defines it, really.
I reduced the carb intake, saw lower blood glucose levels, then got almost normal Hba1c for several years and the 'in remission' tag was added to my medical file.

 

[Deleted member 21371]

It depends on how you define it.
To me it's a very personal target.
My definition is normal blood glucose, eating a normal diet, having a normal lifestyle.
Other definitions vary.

 

[ColinUK]

I think the official line is that if you’ve had “normal” HbA1C for two years without any medication then you’re in remission.

 

[Kreator]

It depends on how you define it.
To me it's a very personal target.
My definition is normal blood glucose, eating a normal diet, having a normal lifestyle.
Other definitions vary.

This is also my definition. 😉

 

[Deleted member 21371]

Out of interest, what do you class as a 'normal' diet, ie what are you eating that us low-carb Type 2s might not be?

Greggs
Macdonalds
Pot noodles
Porridge pots
Roadside bacon sandwiches on thick crusty white bread.
Etc.

 

[Kreator]

Out of interest, what do you class as a 'normal' diet, ie what are you eating that us low-carb Type 2s might not be?

Hi, that's a long story, but my thread about my jouney from weight loss to eating 'normally' starts here:

NHS Low Calorie Diet - Type 2 Remission Programme - Oviva (aka Newcastle)

Hi All, 25/08/2021 - Link: https://www.england.nhs.uk/diabetes/treatment-care/low-calorie-diets/ - Includes links at the bottom to DiRECT Year 1, DiRECT Year 2 & DROPLET Trials ;) 25/08/2021 - Link: https://oviva.com/uk/en/programme/diabetes-remission/#join - This explains the programme...

forum.diabetes.org.uk

For me, living with T2 and what to eat vs what not to eat was always a battle - no wonder though as my body wasn't working correctly, so excess carbs were a problem by default - in the end, I followed Roy Taylor's advise (once I was on the NHS Programme) and realised what was going on - and it was never going to get better unless I took the action that I did...

During the shakes phase, I was listening to all the different opinions from this forum, and made my own choice which was to always not be afraid of any particular food - it took some time but I can now eat all the things (Rice,Pasta, Bananas etc) are 'forbidden if you like' for T2D's

The main difference for me is portion size and choice of any particular food on any given day - for instance, I don't eat a banana every day, just like I don't eat rice every day - I do enjoy a bowl of porridge most mornings though!

I also generally don't eat after 7pm, and average out at around 1900 - 2000 Cals a day - which is all totally different from how I used to eat!

I can only do this now as I'm 'In Remission' - if still T2D my Glucose levels would be all over the place no matter what I did...

I still need to be careful, but in a sustainable way - and for me having to miss out on certain foods wouldn't be sustainable - what does count is portion control and not eating the same thing every day - variety is also key as well as keeping active - 10,000 steps a day minimum...

What keeps me going is - I never want to go to that place again...

This forum has helped me immensley, in ways I can't describe, but one thing is for sure, there are so many opinions out there and most are correct, but it's important to find your own way to get there....

So for me, official definitions of being in Remission are giving people false hope, and bound to make people think they can go back to normal ways - a HbA1c level below 48mmol/mol for a least three months without taking any medication is only scratching the surface - It's a great start for sure, and people should be pleased at getting that to that level, but to truly aim to beat this takes a lot more....

 

[Kreator]

Greggs
Macdonalds..........

They all have their place!

...It's about choice - If had either every day again, I'd be straight back there 'where I never want to be again' but would I deny myself a treat every now and again? - No - because that's not sustainable and not real life either!

 

[Kreator]

I'm the same, which is why I haven't been tempted to try regular pasta again (chickpea pasta, at half the carbs, is fine), nor rice of any sort, and I've practically given up potatoes, bread, almost all processed foods and all sweet stuff bar extra dark chocolate. This, of course, because a) that's what's regularly advised and b) the risk of ending up back where I started and having to do it all over again.

Martin

Yep, for me, one word keeps coming back to me - 'Mindset' - The rest follows - If I think about it - Rice I eat is wholegrain, I eat Sourdough bread, small wraps - so I guess I've made healthier swaps - very mindful of processed foods, no bags of sweets etc - I eat Jacket Potatoes rather than chips etc. etc.

 

[Deleted member 21371]

They all have their place!

...It's about choice - If had either every day again, I'd be straight back there 'where I never want to be again' but would I deny myself a treat every now and again? - No - because that's not sustainable and not real life either!

I agree entirely.
It's all about weight and shape for me.
I watch both, if either goes wrong, it's time to wind it all in.

 

[sarahb83]

hi I’m in a strange position well I feel like it’s strange since being diagnosed in September I’ve lost nearly 5 st I’m 5ft7 now a dress size 14 and only 38. My hba1c was horrendous on diagnosis at 89 when I was checked again end November it was 45 due to be checked again in a couple of weeks. My nurse has said to me remission is below 42 and I’ve got to stay there for 6 months which I’m in agreement with just really worried I’m not going to be able to achieve that I was randomly testing before and after meals as most people on here say you should but it’s sent me into a bit of a frenzy cos I can’t get my fasting numbers below 6. My after meal number are mostly 6. Something. Did you all/ do you still randomly test?

 

[Drummer]

@sarahb83 I don't test now as once I was seeing lower numbers after meals I just continued to eat under 50 gm of carbs a day, but I was not worried at all - no one has ever shown any interest in my fasting levels or even mentioned them when they knew I was testing.

 

[Deleted member 21371]

hi I’m in a strange position well I feel like it’s strange since being diagnosed in September I’ve lost nearly 5 st I’m 5ft7 now a dress size 14 and only 38. My hba1c was horrendous on diagnosis at 89 when I was checked again end November it was 45 due to be checked again in a couple of weeks. My nurse has said to me remission is below 42 and I’ve got to stay there for 6 months which I’m in agreement with just really worried I’m not going to be able to achieve that I was randomly testing before and after meals as most people on here say you should but it’s sent me into a bit of a frenzy cos I can’t get my fasting numbers below 6. My after meal number are mostly 6. Something. Did you all/ do you still randomly test?

Does it matter?
For me, I will be good if I have no diabetic symptoms, a BG level that gives me that, and a lifestyle I enjoy.
You have come an amazing way, your hba1c is down by 44, coming down another 4 and a nurse telling you you are in remission won't change that.

 

[rebrascora]

Greggs
Macdonalds
Pot noodles
Porridge pots
Roadside bacon sandwiches on thick crusty white bread.
Etc.

But in reality you are just maintaining your remission by yo-yo dieting? By your own admission, you have just done a stint of very low calorie diet shakes to lose weight after putting some back on. I am not sure this is any better than following a low carb way of eating for life for other people and may in fact be less healthy. I accept that low carb eating is not easy if you eat out a lot and travel perhaps, but for many people, once you get over the initial adjustment away from carbs it is quite easy to maintain. It is what works for the individual, but I would say that your remission is maintained by eating what you like and then dieting quite strictly when you need to lose weight.

 

[sarahb83]

Oh god I thought I was doing low carb my nurse said 130g carb a day is low carb so that’s what I’ve been doing I don’t think I could manage 50 I’m worried about what’s going to happen to me as I’ve developed this so young compared to what stats say are typical. The advice I got from professor Taylor was that providesd I stay at the weight I was in November or lower (which I am) I can be confident of the diabetes staying away but in much later life when much less active it may well return but diabetes 70+ And causes almost no disadvantage to health when diagnosed over the age of 70. So I was feeling optimistic but then so many people in here disagree on remission so I’m just all over the place emotionally

 

[Deleted member 21371]

But in reality you are just maintaining your remission by yo-yo dieting? By your own admission, you have just done a stint of very low calorie diet shakes to lose weight after putting some back on. I am not sure this is any better than following a low carb way of eating for life for other people and may in fact be less healthy. I accept that low carb eating is not easy if you eat out a lot and travel perhaps, but for many people, once you get over the initial adjustment away from carbs it is quite easy to maintain. It is what works for the individual, but I would say that your remission is maintained by eating what you like and then dieting quite strictly when you need to lose weight.

No

 

[Deleted member 21371]

Oh god I thought I was doing low carb my nurse said 130g carb a day is low carb so that’s what I’ve been doing I don’t think I could manage 50 I’m worried about what’s going to happen to me as I’ve developed this so young compared to what stats say are typical. The advice I got from professor Taylor was that providesd I stay at the weight I was in November or lower (which I am) I can be confident of the diabetes staying away but in much later life when much less active it may well return but diabetes 70+ And causes almost no disadvantage to health when diagnosed over the age of 70. So I was feeling optimistic but then so many people in here disagree on remission so I’m just all over the place emotionally

As you can see, it's an emotive issue.
I lost over 5 stone originally.
I work within my own bodies range of weight that works for me.
Others choose to label it a yo yo diet if I gain a few pounds back, and deem it a failure as I choose to lose weight again.
To me, weight isn't, and won't be the driver that replaces worrying about diabetes.

 

[sarahb83]

As you can see, it's an emotive issue.

Yeah I just don’t understand if the science shows that in some type 2 people the beta cells that were originally believed to be dead/destroyed are actually lying dormant and have the potential to be woken up how people can argue with that? It’s just awful that for some type 2 people it isn’t possible. Who knows if it’s going to be possible for me but I’m giving it my best shot despite really struggling with the emotions of it all. I definitely feel much fitter and healthier now which has to be good x

 

[Deleted member 21371]

Yeah I just don’t understand if the science shows that in some type 2 people the beta cells that were originally believed to be dead/destroyed are actually lying dormant and have the potential to be woken up how people can argue with that? It’s just awful that for some type 2 people it isn’t possible. Who knows if it’s going to be possible for me but I’m giving it my best shot despite really struggling with the emotions of it all. I definitely feel much fitter and healthier now which has to be good x

I think it's in much the same way weight loss can be dismissed for all because a low percentage are not massively overweight at diagnosis, and lack of visible fat outside is enough to dismiss the actual results, even though there is proof of internal fat even then.
And type 2 is insulin resistance initially, we do produce insulin, just don't use it well, exercise and weight loss seem to help that aspect as well.

 

[Leadinglights]

There is a lot of debate about the best way because everybody is different in how their body responds to carbohydrates and what suits one person may not be remotely suitable for others. The important thing is you find a dietary regime which you enjoy and you can sustain for the long term as it will feel just normal to be eating that way.
There may be things you miss at first but after a while you won't and probably wondered why you even liked them as you will find there are many things you actually prefer.
We found some crumpets in the freezer and for something full of holes they are surprisingly high carb but one third of a crumpet toasted with butter and marmite tasted like heaven.
You have done amazingly well with your weight loss and hopefully that is by eating foods you like. By testing the effect of foods and meals you can build up a good repertoire things which you are ok with so it will be less onerous on a day to day basis.
Many people settle on somewhere between 50 and 100g carbs per day as they find that is sustainable and keeps blood glucose levels where they need to be.