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

[Mick1952]

Sorry to hear about your retinopathy, I was not high for long after diagnosis either as I took action immediately but what worries me was how long was it creeping up on me before diagnosis as my type 2 was discovered on a routine blood test.

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...

 

[JohnEGreen]

The thing about remission is it is rarely considered permanent though I know of some people with MG who have been in remission for several years if not decades.

So I will class my self as in remission till I no longer am in remission it's not a matter of promotion or demotion just a description of where I'm at diabetes wise.

 

[silverbear]

Thanks for this thread. It was a question I was going to ask you all myself.
At a routine checkup in Sept '17, my HbA1c was 37mmol and the nurse suggested, no insisted, on a glucose tolerance test. The 2 hour reading was 12.1. Consequently, I was diagnosed as T2D. According to my diabetic nurses: once a diabetic, always a diabetic and they stress it's progressive i.e. even with good control, it will get worse with age. I'm still reading, and seeing much that says it's reversible, but at the moment I'm sceptical. To me, reversible means I can again eat a really good cheese sandwich when I want (Ever a treat, as I've always known it would make me put on weight).

 

[FloraDora]

My Diabetic Nurse says I have 'reversed my Diabetes'. Job done, case closed!

A Glucose test showed that I now have Impaired Glucose Tolerance and this is what I say for things like travel insurance. I think many of us are now reaching the 'reversal' stage with the help of sites like this and low carb advice, and it feels a bit like entering a 'no man's land'! We are without a proper label!!

To be honest, I was a little shocked at how quickly my GP's surgery crossed me off the diabetic register. I still have an annual blood test but it seems this is mainly blood pressure related. When I asked about my HBa1c they were somewhat surprised at my interest, saying they did not realise that I had been diabetic. I still go for the annual retinopathy eye test but that's about it for monitoring.

I know I am not 'cured', and I do go off the wagon rather too frequently, and I am rather too relaxed about checking my blood sugars. Its all a little too easy to believe everything is resolved ......... I do know it's not, but my healthcare team seem quite happy to believe it is!

 

[Biggles2]

I was diagnosed with diabetes in September. HbA1 level then was over 90. Today I have been for review and the level is 31.

Brilliant results @Geraintc! You must be thrilled!

 

[Biggles2]

However, over the past year, my eye tests show that I have developed background diabetic retinopathy.

Sorry to hear this @Mick1952. I will tag @Dark Horse as he is a font of information when it comes to eye complications.

 

[silverbear]

Newbie question: do most of you own meters and test yourselves?

 

[Bluetit1802]

even with good control, it will get worse with age.

That is a good point. When we have excellent control through diet alone we are relying on our pancreas to keep going. As with all organs and body parts, as we age things start to wear out, and so may our pancreases. It is the natural order of things and something we can't do a great deal about. We can do what we can to stay healthy and fit, but age is likely to get parts of us in the end. Another miserable thought is that one of the hormones involved in keeping a good glucose balance when the liver dumps is the human growth hormone. These little beggars diminish as we age, so we can probably expect higher FBG .

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2080461/

 

[bulkbiker]

Newbie question: do most of you own meters and test yourselves?

Yes pretty much.. gives you a far better idea of what the food you eat is doing to your blood sugars.
Doctors and diabetes nurses often say you don't need to (what they mean is they won't prescribe the strips) so we have to self fund.

 

[singsteve]

The phrase "in remission" make sense if someone has had treatment for cancer and doctors cannot be sure they've got rid of all of it. In their case it might resurface after 5 years.
But in the case of diabetes you'll be in a position to deal with any signs of a re-occurrence yourself.
It also sounds so negative.
You would never go to a garage to have your car fixed if they said it was just "in remission" after giving you the bill!

100% correct!

 

[Rachox]

Newbie question: do most of you own meters and test yourselves?

I do along with a lot of others.

 

[bulkbiker]

reversible means I can again eat a really good cheese sandwich when I want

I can .. cheese between 2 slices of thick cut ham.. mmm best cheese sandwich ever.. or for a change ham between two slices of cheese ...buttered of course..

 

[Bluetit1802]

Newbie question: do most of you own meters and test yourselves?

Yes, most of us do. Otherwise we would be working blind in between our HbA1c tests. They are invaluable in helping us tweak our diets so we don't spike as much after eating as well as keeping an eye on trends.

 

[Mbaker]

I'm a bit late to this one. I would have said "Reversed". This is due to the use of Metformin (not a criticism), however "Diabetes Mellitus In Remission" is an official term your surgery apply to your diabetes status and it appears the interim statements say remission is without medication. The other site say this (https://www.diabetes.org.uk/professionals/position-statements-reports/statement-remission-type2):

"We say remission is when someone's blood glucose levels are maintained at a normal range, without the use of diabetes medication to lower blood glucose levels. This doesn't mean the symptoms of diabetes can't come back and it's essential to keep having regular healthcare checks, such as retinal (eye) screening. There's currently no evidence to suggest that remission is permanent – that's why we don't call it a cure, or anything else that suggests it's a permanent situation."

The NHS refer to the above also:
https://www.evidence.nhs.uk/Search?q=remission

This site says (https://www.diabetes.co.uk/diet/put-diabetes-into-remission-with-low-carb.html):

"Definition: Remission is said to occur if blood glucose levels return to normal without the need for diabetes medications."

Mine is just an opinion of procedure / officialdom, what would you expect from a techy. Perhaps consider getting your surgery to rubber stamp your remission, as you do deserve it with the amount of low HbA1c's consecutively - I think you would get this on request (but might have to stop Metformin to get this officially).

@britishpub, could you also please consider re-instating your correct status, you are entitled to your opinion and why should that affect the status that is equal to you.

 

[Biggles2]

do most of you own meters and test yourselves?

Yes I do @silverbear - it keeps me on the straight and narrow in terms of management. I wouldn't be without it.

 

[Rachox]

I'm a bit late to this one. I would have said "Reversed". This is due to the use of Metformin (not a criticism), however "Diabetes Mellitus In Remission" is an official term your surgery apply to your diabetes status and it appears the interim statements say remission is without medication. The other site say this (https://www.diabetes.org.uk/professionals/position-statements-reports/statement-remission-type2):

"We say remission is when someone's blood glucose levels are maintained at a normal range, without the use of diabetes medication to lower blood glucose levels. This doesn't mean the symptoms of diabetes can't come back and it's essential to keep having regular healthcare checks, such as retinal (eye) screening. There's currently no evidence to suggest that remission is permanent – that's why we don't call it a cure, or anything else that suggests it's a permanent situation."

The NHS refer to the above also:
https://www.evidence.nhs.uk/Search?q=remission

This site says (https://www.diabetes.co.uk/diet/put-diabetes-into-remission-with-low-carb.html):

"Definition: Remission is said to occur if blood glucose levels return to normal without the need for diabetes medications."

Mine is just an opinion of procedure / officialdom, what would you expect from a techy. Perhaps consider getting your surgery to rubber stamp your remission, as you do deserve it with the amount of low HbA1c's consecutively - I think you would get this on request (but might have to stop Metformin to get this officially).

@britishpub, could you also please consider re-instating your correct status, you are entitled to your opinion and why should that affect the status that is equal to you.

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.

 

[Biggles2]

Those trying to define their diabetic state may be interested in this from the International Diabetes Remission Registry http://www.diabetesremission.org :

@VictorVillalobos - one of the authors - is a member of our forum.

 

[Deleted member 464700]

I have logged into my profile several times to change my diabetic classification, and hovered over the Type 2 (in remission) button. There is also a ‘Reversed’ option too. I don’t really like either term as I just consider myself very well controlled with my last three HbA1cs in the mid 30s. I feel I deserve one of the alternative classifications (sorry, blowing my own trumpet) and I think I prefer ‘In Remission’. Shall I change it or shan’t I? What do you all think?

What difference does it make what you call it, if you have a Blood Sugar problem then you have a problem, if you don' then you haven't, the name is irrelevent

 

[Dark Horse]

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...

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'.

 

[Biggles2]

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".

This happened me too @Bluetit1802. My diagnosis has been moved from my 'active problem' list to my 'inactive problem' list. I am peeved because I know that it is inactive precisely because I spend a fair amount of time and effort keeping it that way, LOL!