Once T2 Always T2?

I was told by my GP last year that my T2D was “resolved” and I received a letter stating that.

That was 2 years after initial diagnosis.

However I still get an annual retinopathy screening and get invited for free flu jabs.

Diet, exercise and intermittent fasting.

Whether or not you can ever be considered “diabetic free” is the question and from my perspective it would require many years to decide that definitively.

I have decided upon a change of lifestyle which so far is working to keep my T2D at bay. How long I can maintain that is the challenge, but so far the outlook remains positive.

The phrases often used are "reversed," "in remission" and "controlled."

I prefer "controlled." My blood glucose levels are now non-diabetic but that is only because I am on a low-carb diet. With persistence, sticking to that diet, they should stay "controlled" for a long time, hopefully for the rest of my life.

However Type 2 diabetes is often characterised by medical professionals as "progressive" which, if true, would imply that maintaining "control" gets harder and harder over time. I have not seen enough convincing evidence that, for well-controlled people, the disease will inevitably worsen; but I do, sadly, regard it as a possibility nevertheless. Hence the need for vigilance, regular testing, and watching out for complications.

adyf said:

Hi everyone,

Newly diagnosed this week with 53mmol. What I’d like to know is, if you get your readings back to normal are you classed as in remission or diabetic free? Is there a definitive on this?

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These are the current GP Handbook guidelines

https://www.gp-update.co.uk/SM4/Mutable/Uploads/medialibrary/gp-update-handbook-au16-diabetes.pdf

Diabetes that ‘goes away’
Some people, given the diagnosis of diabetes, radically change their lifestyle, lose weight and their HbA1c drops out of the diabetic range. What do you do? There is little guidance on this, but bear the following in mind: • They are at high risk of ‘relapsing’ and becoming diabetic again – in our practice we do an annual HbA1c to look for this (and BP, cholesterol, etc.). • They continue to need retinal screening. In order to ensure they are called for this use the code ‘Diabetes in remission’ (C10P) NOT ‘Diabetes resolved’ (212H) as this latter code doesn’t trigger recall. Do note that ‘Diabetes in remission’ does NOT exempt them from QOF – but should they not be getting QOFstyle care anyway? (National Diabetes Retinal Screening Programme, 2014).

My most recent HbA1c is non diabetic as are my blood sugars I check at home. However I don’t consider myself ‘cured’, maybe ‘reversed’ or ‘in remission’ but I prefer ‘very well controlled’, which is how my GP describes me too. The reason is if I relax my diet and suddenly eat more carbs or stop my meds, I believe I will lose control.

I don't think the diagnosis goes away unless it was made erroneously in the first place. But many are "diet controlled" and don't require medications to maintain normoglycemia.

Diagnosed less than a year ago but the most depressing thing, is that my doctor says that T2 is a progressive illness and will get worse with age!
I read this forum to balance his negative ideas!

Diane60 said:

Diagnosed less than a year ago but the most depressing thing, is that my doctor says that T2 is a progressive illness and will get worse with age!
I read this forum to balance his negative ideas!

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Many GPs and medics say and think this because that is what they actually see in their own surgeries and clinics. Very few see more than an odd one in remission. Those of us on this forum in remission are very far and few between. in the general population. Fortunately, the tide is turning as more and more experiments and research are showing T2 can be put in remission through diet.

adyf said:

Hi everyone,
Newly diagnosed this week with 53mmol.

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Sorry, I forgot to say, welcome to the forum!

Given that my good control results in my GP not seeing me, it is unlikely a GP will see anyone "in remission" often... (GPs tend to remember "problem cases".)

Bluetit1802 said:

Many GPs and medics say and think this because that is what they actually see in their own surgeries and clinics. Very few see more than an odd one in remission. Those of us on this forum in remission are very far and few between. in the general population. Fortunately, the tide is turning as more and more experiments and research are showing T2 can be put in remission through diet.

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I could have added to that by saying that just before Christmas I was in hospital. When I was being initially assessed in A&E I told them I was T2, but when asked which medications I was on and I said "none" all 3 nurses (YES - 3 of them. I was very honoured!!!) were amazed and asked me to confirm my statement. The same thing happened when asked again on the ward - but only one nurse this time. I also got lots of "well done's" when I had my finger pricks done despite them all being a lot higher than I normally see at that time of day. It was clear the nurses were not familiar with a controlled T2 not on meds.

Diane60 said:

Diagnosed less than a year ago but the most depressing thing, is that my doctor says that T2 is a progressive illness and will get worse with age!
I read this forum to balance his negative ideas!

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I hope you will take great delight in proving him more and more wrong every year

Bluetit1802 said:

It was clear the nurses were not familiar with a controlled T2 not on meds.

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I initiated a conversation on this very subject during a diabetes follow-up visit with my doctor a few months ago. I have already mentioned this conversation on the forum before, but here goes again. The context is that it was a diabetes follow-up visit, by which time my HbA1c had been stable, at non-diabetic levels, for several months using diet-only, as prescribed by the doctor. These are not exact quotes, but close paraphrases:

Me: "When I managed to get my A1c down to non-diabetic levels with diet only I was amazed, shocked really. Is this diet-only route the treatment that you give to all of your patients?"
Doc: "Yes, unless their A1c is really high, like, 15% or something."
Me: "Am I a rare case or do you often see successful outcomes with diet only?"
Doc: "No, I don't often see success. You are much more motivated than most of these other patients. Most of them are overweight. They are addicted to certain kinds of foods and cannot break the habit."
Me: "I guess my numbers could worsen in the future and then I would need the drugs?"
Doc: "Yes, that's possible. Drugs are good when you need them!"

I have concluded that it has a lot to do with the personality of the doctor, or nurse. As you can see, my doctor is willing to prescribe a treatement (diet only) that he has personally experienced as failing to work, for most of his patients. This doctor almost always "gives the patient a chance" (he told me, usually two or three months) to try the diet-only route before prescribing drugs if necessary

It is easy to imagine a doctor with a different personality deciding that it is just not worth the trouble, and the potential health risk, given that so many people apparently fail to make headway when attempting the diet-only route. I also have to say that, although my doctor firmly prescribed diet-only as the initial treatment, he gave me almost no practical advice as to what I should eat. I had to figure all of it out for myself. So: kudos to him for giving the right advice, but the detailed guidance was non-existent.

Diane60 said:

Diagnosed less than a year ago but the most depressing thing, is that my doctor says that T2 is a progressive illness and will get worse with age!
I read this forum to balance his negative ideas!

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Here is the start of an article by Jenny Ruhl also contradicting such negative ideas:

"Do People with Type 2 Always Deteriorate?

The single most dangerous idea you are likely to encounter after getting a diabetes diagnosis is the belief that science has proven, beyond a doubt, that no matter what you do, your Type 2 Diabetes will get worse.

Your doctors probably believe this. Though they may give lip service to the idea that you can control your disease through diet, exercise, and drugs, most family doctors actually believe that nothing you can do will make much difference in your long-term outcome. This is why they are not likely to urge you to take an aggressive approach to managing your disease but merely write prescriptions for drugs that, if they do anything at all, do a mediocre job of controlling your blood sugars.

Why Doctors Believe this Toxic Myth" ......

You can read the rest of what she has to say on this topic here: http://www.phlaunt.com/diabetes/14046702.php

Grateful said:

The phrases often used are "reversed," "in remission" and "controlled."

I prefer "controlled." My blood glucose levels are now non-diabetic but that is only because I am on a low-carb diet. With persistence, sticking to that diet, they should stay "controlled" for a long time, hopefully for the rest of my life.

However Type 2 diabetes is often characterised by medical professionals as "progressive" which, if true, would imply that maintaining "control" gets harder and harder over time. I have not seen enough convincing evidence that, for well-controlled people, the disease will inevitably worsen; but I do, sadly, regard it as a possibility nevertheless. Hence the need for vigilance, regular testing, and watching out for complications.

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Everything I have read so far suggests that it is the treatment with drugs and insulin that leads to the worsening , not the underlying disease itself . Clearly if you carry on eating the stuff you are intolerant to, or if you carry on having bigger and bigger doses of the drugs you need to carry on such eating, then yes things will get worse - but I see no reason for that to be true once control has been achieved via diet.

ringi said:

Given that my good control results in my GP not seeing me, it is unlikely a GP will see anyone "in remission" often... (GPs tend to remember "problem cases".)

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I have a good relationship with my GP but I've seen him more for back problem than anything diabetic.
When I saw him today he was happy that he can help with pain relief and my partner's worries about my long term back health.
I go to a specialist at hospital about my diabetes who knows everything about endocrology and specialist diabesity care.
My great GP knows huge amounts about all possibilities to direct us to specialist care if needed too and when. I cannot complain about a very good GP. It is sad not all are the same.
I haven't had a bad one yet. God help me if I ever did. I'd insist on changing if I ever did get one. I'd give good care if I was a GP.. I never ask for more than I'd give.

Some GPs aren't child friendly but any nonsense I ask them outright for same care for my kids as any taxpayer. They are innocent and cannot ask for help themselves.
I remember having one health centre GP trying to patronise me about how often young children are ill. So as I'm genuinely interested I said 'no, how often?' He couldn't remember what statistic he had read. Ooops! He won't do that again. I would never fall for gobbly gouch. Luckily for him our regular GP was very children friendly. He was great too.
In the ideal world none of us would need a GP but sometimes we do.

adyf said:

Thanks to all for your replies and helpful insight.

I’m still getting my head around things and trying to take in the myriad of information.

It appears that constant surveillance is necessary to prevent a relapse even if I get back to diabetes free.

I did read with concern on this site that ‘life expectancy with T2 is likely to be reduced by 10 years’. :-(

After the initial shock post diagnosis, I have a feeling I will turn this around and become fitter and healthier than I’ve been for years. I am ****** off with myself however that it had to come to this first and that I didn’t do anything sooner.

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Those statistics include thousands of type2s who are still oblivious to low carbing.