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Can I ever say that I no longer have Type 2 Diabetes?

M

MikeZ

Well-Known Member
Messages
132
Location
Southern Oregon USA
Type of diabetes
Type 2
Treatment type
Diet only
This will just be a quick timeline of, (what I believe are), the pertinent facts.
Nov. 2014 - Started a statin regime. No prior indication of diabetes.
Mar 2015 - HbA1c 9.2
Immediately quit the statin and began a diet and exercise regime which I have pretty well stuck with over the past 7 years.
I've never had another HbA1c over 7.0 and only once has it been over 6.5. My most recent was 5.6 and most fall in the 6.0 - 6.1 range.

But you know what they say, once you have it, you will always be a considered diabetic. Is this still true? I don't really care about the label but there are certainly financial aspects, ie; health insurance costs, that make me want to claim to be "diabetes free!"

For the record, I have been on Metformin since the initial diagnosis.
 
I was nodding away @MikeZ, until I got to the bit about being on metformin. Officially, according to various officialdoms that I am too tired to cite right now, you need to be anti-diabetic meds free to argue on your own behalf re full complete remission/reversal. (Thinking about insurance.) Also, your fasting blood glucose reading is also involved, combined with a normal HBA1c, re complete reversal, and there is a time period stipulation as well. Hang on and I will find the link for the officialdom....

The International Diabetes Remission Registry
In www.diabetesremission.org/our-task/

“Definition of Diabetes Remission”

Following international standards a person goes into diabetes remission when the following conditions are fulfilled:


1. Had a diagnosis of diabetes

2. Fasting Serum Glucose is less than 100 mg/ml (5.6 mmol/l)

3. HbA1c is less than 6.0% (42 mmol/dL)

4. There is no hypoglycemic therapy (either pharmacological or surgical)


We define three levels of remission:


· Initial. When the conditions are fulfilled for three months

· Complete. When the conditions are fulfilled for one year

· Operational cure. When the conditions are fulfilled for five years or more”

There we are. I like the "operational cure" definition, although the word "cure" always invites lots of lively discussion
 
The old adage is that once you've crossed the rubicon & received an official diagnosis then you carry that badge for life.
Some of us make great strides putting our T2 into remission through dietary changes (low carb), weight loss & exercise.
On a case by case basis some of us have been marked as "resolved", in my own case an endo offered to "remove" my diagnosis.
Others are marked in "remission", the process is very ad hoc & differs practice to practice.

Whatever your route to improvement only a fool would ever think they're cured & can revert to pre-diagnosis levels of carb consumption.
You know you have the trigger, the sword of Damocles, the wolf at the door.
Ongoing vigilance will always be required.
 
You know, @Ronancastled, some folks can go back to eating regular folks' level of carbs, have seen them operate over the years in this forum. I know it is not very common, but it does happen. They weren't fools! Just metabolically rewired, or whatever you want to call it. You could also say they obviously had a mild dysregulation?
 
hmm I question if regular levels of carbs can be eaten, that I think would be over 200 grams of carbs a day and unless they were wfpb would tend to lend towards ultra processed foods - I will believe it if maybe 3 or 4 persons pipe up and send results (one potato will not cut it, proper portions of e,g, fish and chips etc). What I have seen is people coming back reporting they did this (went back to "normal" eating) and need to get back on the wagon.

It is my view that when someone gets to remission this sets the template for them to follow (its not exactly dire, it;s just human nature to crave what is out of bounds).

Addressing the question, I would remove the metformin and see how the body copes without it, if this works out I would then ask my health authority to adjust my medical record to whatever that country code is for remission.
 
I think I agree with @AloeSvea on this one, some people can be "cured", though if the diet was the cause they may always have to watch what they eat. But if the T2 was caused by medication rather than diet, it's not clear to me that the cure can't consist of avoiding a resumption of that medication. (Though it may be tricky if eg steroids are essential for your health.)
 
I have been within the normal BG range since a few months after my T2 diagnosis, but I am still only listed as in remission, not classed as cured.
Like others, I would not consider anyone still on drugs such as metformin as having achieved remission. If you managed to reduce your HbA1c to below 6.0% and then, with the agreement of your team, keep it below that while reducing/stopping metformin then you would, in the UK, be regarded as in remission.
 
IMO, I think you can probably only say you dont have T2 anymore (or any type of diabetes) if you have normal blood test results and can eat what would be considered a typical amount of carbs for a 'normal' person (ie 200+ carbs a day) with no meds and no problems

Bit like the fact I have no problems associated with eating gluten - because I'm just not eating any, doenst mean my gluten-intolerance has magically disappeared - I'm just not provoking it.
 
I'm in the initial stage of remission, my three month test showed a HbA1c of non-diabetic and I achieved this with dietary changes. I know however that if I didn't follow a low carb diet then I'd be back up in diabetic figures.

For me, remission is dependant on making a change (dietary). As far as I know, I'll always be a diabetic, I just manage it carefully to keep my numbers low. My body cannot regulate glucose as well as a non diabetic.

I've heard some people can achieve remission to the point they can eat carbs without it affecting their blood levels so much (to the level of your "normal" non diabetic), but I believe this is rare. Happy to be corrected though!

I personally believe that I'll always be a diabetic. Even in remission, if I stop low carb, my numbers will go back up.

As others have said, remission doesn't mean cured, except for those lucky few!
 
All of the above comments are very much appreciated. In the pit of my heart I believe that the statin was the catalyst to my T2 diagnosis. However, because I also changed my diet and exercise regime when I quit the statin, I have to conclude that all of the changes contributed to my remission. My doctor did give me the green light to quit Metformin but, for the moment, I am unwilling to drop it... even if it means that I must continue to wear the T2 label.
 
From studies I have seen, we who get ourselves into remission under the official criteria will, after a year or so, have recovered largely our beta-cell functionality to an extent sufficient to keep glucose and insulin within tolerable (remissive) bounds, but we will not usually recover more than half the normal efficacy of first phase insulin response. The metabolic assault occurring in all those pre-diagnosis years leaves some legacy in those cells or in their regulatory mechanisms that we cannot undo: damaged goods. So once a T2, always (somewhat) a T2. That’s my impression so far.
 
My GP practice classed me as being in "remission" following one year of non-diabetic HbA1c results (no medication). I still have some residual diabetic symptoms, and I know from experience if I up carb intake significantly from my normal ~20g/day my morning readings go up straight away, and take about a week back at the 20g level to stabilise.

I take from this that if I ate at those levels consistently I would see my HbA1cs rise etc and my symptoms return. So even though my A1c has been normal for nearly three years, as far as I'm concerned I'm not "cured". "Remission" to me means not incurring more damage, thanks to being at normal levels.

If you were allergic to wool. but had managed to avoid any contact with wool for a while, you'd still be allergic to it, just not having any discomfort. I guess that's how I look at it.
 
Splitting hairs, @MikeZ, if you only want to be labelled as "diabetes free" by insurance agencies etc, then if you passed all the diagnostic tests for Diabetes (FPG, HbA1C, OGTT etc), and were not taking any diabetes medication then you could argue that you weren't "diabetic" ?
Since how could anyone diagnose you?

(Not that diagnosis is simple, part art as well as science and it involves probabilities & statistics! )

Interesting that the US and UK just define remission in terms of of HbA1c alone and medication free ( e.g International experts outline diabetes remission diagnosis criteria | Endocrine Society), unlike the German and Mexican based Diabetes Remission Org that @AloeSvea pointed to, which also includes Fasting Plasma Glucose.
I am in remission according to the former criteria but not the latter, as my fasting blood glucose (dawn phenomenon ?) is raised I would be much happier it were not raised, but it seems recalitrant.

Personally I am still content to be labelled as diabetic, since (in principle ...) I should still get annual checks for bloods and retinopathy on the NHS.

If I could pass an OGTT I would be over the moon, but doubt that will happen!
Being able to eat 100 to 130 g a carbs a day and in remission would feel like being "Normal" to me.


(PS, being labelled as a Diabetic would be an advantage for buying annuities ...)
 
Thanks for sharing that @MikeZ - it's always interesting to read about folks's relationship with metformin.

I experiment heaps with different strategies to deal with the Big D, and have recently taken on metformin, so I am not anti-anti diabetic meds for sure. But, from my own experiments and experience - you could replace metformin with something dynamite - like increased exercise - doing HIITs, for instance, if you aren't already? (Michael Mosley is a really good writer and experimenter himself on this stuff - and if time is a problem as it is for many of us - his 'Fast' 'Exercise' is it? It really accessible. Or, 'just' doubling your walking? If that's what you are doing.

Or updialling your way of eating, and lowering your carbs even more somehow or changing the fats-carbs (and protein) ratio to shake things up. I say 'shake things up' because it seems some level of 'stress' on our blood glucose systems is what can do it, in improving our blood glucose readings (and meds do that too). (Prof D'Ogostino researchs and talks about this on youtube if you want to follow up on this idea.)

And, weight loss and lowering your waist size is another one of those things you can experiment with for lowering your blood glucose levels without the metformin. (ie de-fatting your liver and pancreas more than you have already even.) I think this one is one of the hardest strategies - weight loss - because our bodies have some pretty impressive systems in place to maintain our weights - and targeted weight loss is an odd idea really. (how does that work? It doesn't, methinks.) (more like a delightful surprise? If it happens, in my experience.)

I'm not sure if any of those things fits in with your life circumstances at the moment? But I hear your anxiety about dropping the metformin, whilst you have those fab readings. I hope you check Prof D'Ogostino out on youtube - he is a really good on-science commentator, and his idea that metformin is just one of the 'shaker uppers' of many metabolic shaker uppers I think is a sound one, that my own experience backs up. What do you think?
 
I hear you @BravoKilo. Yes, one of the things I thought was really interesting in the remission org (they are definitely pitching themselves as global/internet global - the founders/scientists are Mexican and German - rather than the 'based in' or 'for mexicans and germans' I believe! ) was including the fasting blood glucose reading. I understand why - as it is an indicator of a good functioning blood glucose system, which is what the remission thing is all about. Those of us with stubborn high dawn phenomenon - yeah - it is a sign of dysregulation, and, sadly it is meaningful.

Dr Fung's definition is HBA1c based as well, as this website's I believe? And his is 46 and below (6.4%) Perfectly reasonable definition as well, as he is about, and came from, the position of getting us out of kidney damage territory - a very laudable thing. This site's remission definition is and hba1c of below 42 I think? (6% and below?)

And whether you include those who have had the surgery. I would! As, how cruel not to? But I get not including them, as it is not their own body's that have righted the blood-glucose-system wrong, but something external. (ie the knife!) But I would think - who cares? but you know - scientists.
 

A lot of what you mention here are things that I am already doing. I hike regularly, (5-6 times a week in the mountains near my home... typically about 2 hours per hike). I also go to the gym 4-5 times a week and do weight training. I keep an eye on my carb intake as well as my overall diet. I believe that I can maintain this lifestyle for several more years, (I'm 62), and probably do just fine without the Metformin. However, back to the question at hand, I also believe that if I stop eating right and exercising, my numbers will suffer fairly quickly. So in that respect, I guess I've answered my own question. I am T2 and I have to be careful or I will reverse my reversal, (is that a thing?). Cheers!
 
But getting back to the original question - we live in interesting times regarding definitions and theories and treatment options for type two. I personally hope we get to a time when you can say "I had type two diabetes but now I - am symptom-free/ in remission/reversed it", (or even - "I don't have type two diabetes any more" !!!!), and the life insurance companies can go take a hike. It is a metabolic disease, and goodness knows - metabolisms change!

For me personally, I have accepted that I am unlikely to get there in the time I have left. But - I do not regret the trying of it! Not at all. I wouldn't know what I know about how my diabetes plays out to the extent I do (and it's to a great extent) if I had not given remission a serious bash.

But @MikeZ - it's looking really good for you, and this is a marvellous thing.
 
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