Type 2 Should I Classify Myself as ‘In Remission’?

[DCUKMod]

I was the same pulled 21 on a routine fasting test, but knew there was a problem brewing as I had developed an unquenchable thirst. However, my first 2 eye tests following diagnosis were perfectly fine, it is during the last 12 months they have developed retinopathy. Up till then, my diabetic Nurse thought my diagnosis had been incorrect as she couldn't understand how quickly I got my bloods under control. Diabetes as a disease has to be more complicated than just measuring blood glucose, and that's what concerns me about anybody claiming reversal based on bloods alone. I know this won't be a popular point of view, but I can't claim remission or reversal while my eyes are deteriorating with a diabetic complication, even though I'm med free and normal bloods...

Hi Mick - Welcome to the forum.

I'm sorry, despite great control you find yourself with retinopathy. Have you been told your retinopathy is definitely diabetic retinopathy? People without diabetes can develop retinopathy too.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809909/

 

[silverbear]

Thanks for your replies. I've only just started confronting the issue properly. I'll add 'investigate meters' to my job list.

 

[Rachox]

Thanks for your replies. I've only just started confronting the issue properly. I'll add 'investigate meters' to my job list.

There are some free ones but I wouldn't necessarily obtain a free one as the ongoing expense of the test strips is actually more important. I got the SD Code Free, it’s available from:
https://homehealth-uk.com
I get supplies of strips and lancets direct from Home Health too using the following discount codes:

5 packs 264086

10 packs 975833

Don't forget to check the box stating you have diabetes and the VAT is deducted

 

[Mick1952]

Hi Mick - Welcome to the forum.

I'm sorry, despite great control you find yourself with retinopathy. Have you been told your retinopathy is definitely diabetic retinopathy? People without diabetes can develop retinopathy too.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809909/

I haven't been told it's diabetic, but I'm guessing that as I am registered as T2, there is no way of knowing one way or the other what caused it. It's just so odd to develop the problem 2 years into well controlled diabetes. My GP who I do rate highly, is also surprised. She thinks I am so well controlled, and have been since diagnosis, that I didn't ought to be suffering any diabetic complications. I'm due my annual eye test again soon, so we'll see if things have progressed...

 

[DCUKMod]

I haven't been told it's diabetic, but I'm guessing that as I am registered as T2, there is no way of knowing one way or the other what caused it. It's just so odd to develop the problem 2 years into well controlled diabetes. My GP who I do rate highly, is also surprised. She thinks I am so well controlled, and have been since diagnosis, that I didn't ought to be suffering any diabetic complications. I'm due my annual eye test again soon, so we'll see if things have progressed...

Have you ever had a period of high blood pressure at all?

 

[Indy51]

I haven't been told it's diabetic, but I'm guessing that as I am registered as T2, there is no way of knowing one way or the other what caused it. It's just so odd to develop the problem 2 years into well controlled diabetes. My GP who I do rate highly, is also surprised. She thinks I am so well controlled, and have been since diagnosis, that I didn't ought to be suffering any diabetic complications. I'm due my annual eye test again soon, so we'll see if things have progressed...

Unfortunately, if you're not measuring your post-prandial BG rises, you have no idea how variable your peaks are. I believe BG variability is a risk factor for retinopathy. The best thing you can do for your BG control is get a glucometer - measure at 1hr and 2 hr and try to always stay below 7.8 mmol which seem to be the point above which risk of complications worsens, as outlined in the following article:

http://www.phlaunt.com/diabetes/14045678.php

 

[Indy51]

Sorry @Mick1952 if you're already using a glucometer. I may be confusing you with another member.

 

[dwnunder]

I wasn’t intending to change my status on my NHS notes, I just wanted to broadcast my success on this forum, ok, to blow my own trumpet, but also to encourage others who are more recently diagnosed.

Well done you and I think that you should blow your own trumpet especially after all your hard work. It isn't easy being so strict all the time so a big pat on the back

 

[Jez87]

Well my GP has changed all my computer records, without even discussing it with me, to show my diabetes is resolved and back dated it to when I first went under 48 (June 2014), and has moved my original diagnosis from "current problems" to "past problems". Noticed it on my on-line records and spoke to him over the phone. He said as the WHO stipulates under 48 to be normal, and as I have remained under 48 for nearly 4 years without meds, he considers I am resolved. Full stop. My lowest HbA1c was 41. It is currently 43. I don't agree with him.


Am I right in believing readings in the low 40s are "pre diabetes" and anything less than 39 is "no diabetes"?

@Rachox you change your status to whichever one you prefer - although are you still on Metformin? Does that make a difference to "official" classification.? It did in Prof Taylor's definition, but didn't in the Virta Health one.

Is that Prof Roy Taylor of Newcastle ? Could you link the info in regarding his classification opinions please ?

 

[Mick1952]

Unfortunately, if you're not measuring your post-prandial BG rises, you have no idea how variable your peaks are. I believe BG variability is a risk factor for retinopathy. The best thing you can do for your BG control is get a glucometer - measure at 1hr and 2 hr and try to always stay below 7.8 mmol which seem to be the point above which risk of complications worsens, as outlined in the following article:

http://www.phlaunt.com/diabetes/14045678.php

That's an interesting article! I have a meter and used to test on a regular basis until I achieved normal a1c results. These days, I do random early morning tests only, my theory being if they were fine, and my a1c fine, I was still in control. Having read this stuff, I'm inclined to do some more testing to see if spiking highs are indeed occurring. Thanks for the link

 

[Mick1952]

Have you ever had a period of high blood pressure at all?

That depends on definition. I take meds and if anything my BP is on the low side. Obviously when I was first diagnosed with high BP, it was raised, but that was around 10 years ago. Been very well controlled since then. The article on 'spiking following meals' is giving me a lot of food for thought now, and a few days of testing is on the cards....

 

[JohnEGreen]

Doctors seem to be in different minds as to this my GP has told me though I am in remission and my HbA1c tests remain in the normal range he considers me a diabetic and foresees no time at which he will remove me from the register.

 

[britishpub]

It is absolutely ridiculous the different levels of care, and different attitudes to T2D displayed by GP's and HCP's throughout the NHS.

The standard and level of care and support offered should be uniform.

 

[Bluetit1802]

Is that Prof Roy Taylor of Newcastle ? Could you link the info in regarding his classification opinions please ?

Yes, this was Prof Taylor's study in the DIRECT trial

http://www.ncl.ac.uk/press/articles/archive/2017/12/directstudy/

Remission was defined as having blood glucose levels (HbA1c) of less than 6.5% (48mmol/mol) at 12 months, with at least two months without any Type 2 diabetes medications.

 

[walnut_face]

It is absolutely ridiculous the different levels of care, and different attitudes to T2D displayed by GP's and HCP's throughout the NHS.

The standard and level of care and support offered should be uniform.

but my care should be more equal than the others

 

[vs123]

Whitest this is a fantastic result the truth is that if anyone went back to their old diet, lifestyle, etc and stopped meds against medical advice, there is a strong possibility the T2 may return. I personally would use very well controlled and congratulate myself everyday for that. You wouldn’t stop having A1C level checks or regular check ups, stop checking your feet, go back to unhealthy diets so you’re still at rick.

 

[Boo1979]

My (admittedly very very) cyncal side, wonders what the pecuniary benefits are for GP’s and / or this site the more people thay can show as having T2 that has been reversed, put into remission or cured

 

[bulkbiker]

My (admittedly very very) cyncal side, wonders what the pecuniary benefits are for GP’s and / or this site the more people thay can show as having T2 that has been reversed, put into remission or cured

I would imagine none especially as they seem to reckon it is progressive and we'll all end up on insulin anyway...
Dr Unwin has shown that his costs for diabetes meds obviously went down once he got his patients off the meds.. making his the cheapest practise in his CCG for diabetes care. Bet he didn't get a bonus though and the drugs reps probably stopped buying his lunches..

 

[Boo1979]

I would imagine none especially as they seem to reckon it is progressive and we'll all end up on insulin anyway...
Dr Unwin has shown that his costs for diabetes meds obviously went down once he got his patients off the meds.. making his the cheapest practise in his CCG for diabetes care. Bet he didn't get a bonus though and the drugs reps probably stopped buying his lunches..

Possibly
But given that 1) the nhs currently incentivises GPs to precribe vatious pharmacological and other interventions to diabetics 2) the NHS is skint and 3) T2 diabetes is blamed for swallowing up a huge chunk of the NHS budget I dont think its much of a leap of ecconomics (not faith / belief) before GPs and other bodies are financially incentivised ( by positive payments for remission etc or negative ‘fines for over x % non remission patients ) ) for how many patients they can / cant claim to have made non diabetic by whatever means and by whatever (increasingly broad ) criteria

 

[Daphne917]

Thanks to@Biggles2 for the tag.

One of the signs of background retinopathy are small swellings on the capillaries called microaneurysms. They look like little red dots in the retina and just one microaneurysm is enough to get a 'background retinopathy' letter. Once a microaneurysm has formed, it can be seen for a few years until it disappears. During this time, even if someone has no new retinopathy, they will still get a 'background retinopathy letter. Background retinopathy does not affect your eyesight and does not need treatment other than maintaining good diabetic control. With good diabetic control, it's possible that someone can revert to 'no retinopathy detected'.

@Dark Horse thanks for this explanation and reassurance. @Mick1952 if it’s any consolation my hba1c has been in the mid 30s for the last 4 - 5 years and I still get ‘background retinopathy’ on my letter.