Type 2 Progressed onto Insulin - is it reversible?

Hi All,

I was diagnosed with T2D in 2012. Initially there was some confusion over the type as I'd accidentally lost a lot of weight and was in ketosis (not high, but in the warning range) with very high BG (~25 mmol/l). Between 2012 and 2014 a learned a lot about diabetes, diet etc. and decided to LCHF. To cut a long story short, I was able to achieve remission, good cholesterol profile (if you worry about that sort of thing) and reverse biomarkers of metabolic syndrome. I took myself off all medication and was discharged from the clinic with an HbA1c of 5.4%

Between 2014 and now, things have slowly been getting worse and I kept telling myself that I would sort myself out eventually. For a number of reasons, 2018 was an incredibly stressful year where I pretty much gave up caring and allowed myself to eat / drink things that I shouldn't. The net result of this is that I've probably had blood glucose readings in the mid teens for over a year.

As people started to comment on weight loss, I decided to weight myself and found I had lost 1 stone in about 2 months. As this had happened before due to stresss / anxiety and then stopped, I wasn't worried initially. However, having ordered some ketone test strips I found I was running at around 2.2 mmol/l at the same time a BG around 17mmol/l. It seemed that my pancreas had shut down and that I'd returned to a similar state to when I was in 7 years ago. I'm now on some background insulin and have been advised to eat 40g of carbs with each meal and inject 4 units of humolog - the purpose being to get the ketones down. I have only been eating 1 meal a day (as I have for years) so my carb intake is still relatively low. After a few days of doing this, I'm now starting to see ketones come down and BGs have for this first time entered single digit territory (although I have done a "correction dose" without food to get here).

So, my questions are:
1. Has anyone else had this experience and been able to get themselves off insulin for a second time, or is it likely I have finally killed my pancreas? The literature on beta cell recovery seems mixed, with some suggesting that 10 years is probably the point of no return.

2. I suspect that I'm still pretty insulin resistant (although I seem to respond to the humolog well), so am reluctant to accept carbs. Before this all started, I was considering the carnivore diet and fasting to drop more weight to finally nail the problem but don't know whether to hang fire on this until things have stabalised. I feel incredibly tired most of the time and am hoping this will resolve now once stablity returns.

3. It seems my body is determined to return my BG to 17 in the morning, regardless of evening insulin dosage (including none), although it's slowly edging down. Is it possible that the "set point" is now just too high and that slowly I'll be able to adjust it as lower BGs become normal?

As this has forced me to take some time off work, I'm hoping that some better sleep my also help as I've slept badly for the past few years as well.

Any advice / responses welcome.

Thanks,

Steve

DCUKMod said:

Hi @stevew242 - Sounds like you've been through the mill a bit of late.

As you probably learned last time around, one of the infuriating things about diabetes is how personalised and fickle it can be. One person might be able to achieve very different blood sugar results, just by tweaking their food intake manimally, and another could need powerful meds to achieve the same thing.

My suggestion to you would be to wipe the slate clean of what might or might not have happened and focus on making positive changes. One big word of warning would be to ensure you are testing, testing and testing when making changes to your regime, in order to ensure you remain safe and your blood sugars remain at safe levels.

I'm not suggesting a blood sugar of 17 is safe, over rthe longer term, but hopefully as the tweaks come into place, those numbers will moderate.

Have the medics talked about doing some tests to ensure your T2 diagnosis is accurate and it isn't a slow developing variant on T1? On a highely generalised, broad brush stroke (and any other cliches you care ot use) basis, T2s tend to increase in weight when their condition regresses, whereas T1 tend to lose. Several T1s are insulin resistant to varying extents.

Do you take Metformin to help ease the insulin resistance?

Sorry for so many questions, but I'm good on questions.

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Thanks for your reply.

At the moment, the focus has been on getting blood sugar down and no blood tests beyond the basics have been done. They did test for the antibodies the first time around and I think other tests (C-peptide) suggested I was still producing insulin. The weight loss the first time was also preceeded by a lot of weight gain over many years. None of this means I haven't developed T1 of course and it's worth finding out. My questions were not so much focussing on the past but looking for hope that if the issue still is resistance (or has been) whether I can recover some pancreas function. The research at Roy Taylor has done at Newcastle University seems to suggest that around 10 years appears to be a cut-off point, I guess I was hoping to hear of other cases where people had found themselves able to reverse T2 even after a significant period.

I don't take metformin at the moment, but that's largely because when I was discharged I was doing well and managing without. I also wonder whether it really does improve insulin resistance or just inhibit GNG, which isn't necessarily a bad thing but doesn't seem like solving the underlying problem. One question I've not had an answer to is whether metformin would slow down the fat clearance of the liver in a carbohydrate constrained environment - i.e. is execessive GNG a way of the liver getting rid of excess fat? I don't know whether my liver is fatty, but given my recent eating/drinking habits I wouldn't be surprised. I've generally resisted the temptation to medicate my blood sugar down to normal as studies such as ACCORD suggest it doesn't really help. I am, of course, at the same time full of **** as I have been ignoring what I know I should have been doing.

I've asked my GP about getting some blood tests done whilst I wait for a referral to the consultants to see if I can get some picture of what is happening and whether I've done any damage. Knowing whether it is late onset T1 will help. I have a lot of first degree relatives who are T2, many of whom you wouldn't expect from external appearances as they're slim so it looks like insulin resistance runs in the family. But as you say, this doesn't mean I'm not at the same time T1.

I take the point about monitoring and have been doing it pretty intensively and watching responses to food / dosages etc. One thing I want to avoid is acting like some diabetic friends whom I know who spend their lives eating what they want and injecting accordingly - whilst their initial problem was T1, some of them are now struggling with retinopathy, angina and all sorts after years of blood sugar going all over the place. The diabetes nurses seem keen to get me to focus on getting rid of ketones and have encouraged me to think differently about carbs, which I feel cautious about as I don't want to inject any more insulin than is absolutely necessary given that I probably am highly resistant anyway.

DCUKMod said:

Steve - A couple of additional questions if I may.

What do you mean you were discharged? Where were you discharged from? Did your medical monitoring - eye screening, annual (at least)Aics and so on. Did those continue? If so, did they show trends?

If you are T2, or a T1 with insulin resistance, then being a bit careful with diet can really help things. If you are T2, I would go as far as to say for many, if not most, diet is the most popwerful weapon in the arsenal Not all T2s can achieve non-diabetic levels without meds, and I couldn't possibly speculate where you are in that, and even if I could, I doubt it'd be incredibly helpful.

Vis-a-vis, Professor Taylor's work and 10 years post diagnosis, it is my understanding much of that understanding relates to his subject population on his studies tending to be a bit more recently diagnosed. Additionally, many T2s, 10 years post diagnosis, historically, have moved forward onto various meds, meaning they were a bit complex for his specific studies.

I haven't been diagnosed 10 years yet, but at 6 years next year, I'm not seeing any progressiveness in my own condition. Indeed, as few months ago I achieved my best ever HbA1c, at 27. The 3 years previous to that I had consistently danced arounf the 30 mark. I'll be trying to keep negative progression at bay as long as possible.

In your shoes, having stated your diet hasn't been too great of late, I'd send the time waiting for my referral wrangling my diet into a better place, testing lots and seeing how that looked.

So are just my thoughts.

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I was discharged from the endocrinology dept to my GP. The eye tests, foot tests etc. continued as did the HbA1c for a while, which started to creep up. The last couple of years I failed to get around to HbA1c although I did keep up retinal scans nearly every year (and certainly last year) and everything continued to look good. In some ways, the lack of problems with my eyes probably lulled me into a false sense of security (as the eyes can be a window into what is going on in a cardiovascular sense) and I felt I had time to sort myself out. It has really been personal / work stress over the last few years that has meant that promises to myself to get around to dealing with it never actually happened and time seemed to go so quickly.

So yes, sorting the diet out is the only thing I can do for the moment which is what I'm already on with. Your results look very promising, better than the best I achieved. I hope that getting back to what I've always known I should be doing will help get me back into shape. There's a lesson here about being complacent and allowing work to take priority.

Fenn said:

Hi, thankyou for posting, I am afraid I have no answers for you but appreciate reading your post if for no other reason than I identify with so much of it.

I too achieved remission and was offered being removed from the diabetes register following an extremely low carb regime combined with extreme exercise but alas slowly fell back down the rabbit hole.

The main thing I dont identify with is one meal a day, I think I would be constantly hungry so never tried that but that also takes away any chance of me answering question three, I have found as long as I take the correct dose of long acting at night, the correct dose after dinner and not eat a ything after dinner then my morning bg is much better or in the 9’s after being between 4 and 7 through the night. Getting the doses right has taken me a year of trial and error.

Do you use freestyle libre? I have found it invaluable (self funding)

Wishing you all the best and hope you find some answers, following with interest.

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Sorry it has taken a while to reply. Your experience is interesting to me as it is similar to mine - have you given up on extremely low carb and exercise?

I don't have the freestyle libre but may get hold of one. Because I'm now self-employed and currently taking time out to sort myself out, I feel reluctant to spend the money but I'm curious about what is happening over night because I'm frightened of hypos although have been nowhere near I suspect given stubbornly high readings. The strange thing to me is that I have been losing weight but am fairly sure I'm insulin resistant as well.

The one meal a day thing started because I had been in the habit of skipping breakfast for a while and then I noticed I was getting the morning high back then of around 9 so I thought I may as well leave it to come down and just got used to it. It's made easier by having coffee with cream, not sure how well I'd do without that.

The challenge is now going to be dropping more weight but in a controlled way that doesn't worry the medics as I'm convinced this will help with resistance, regardless of any deficiency I may now have in producing insulin. My ideal is to take a minimal background dose and not bother with the rapid stuff. At the moment, the nurses seem more worried about stablity which I understand but can't help worry that going back on insulin is the path to weight gain and more resistance.

One of the hardest things I'm finding right now is that everytime my BG gets down below 10 mmol/l I feel like I'm having a hypo and get shakey and anxious. Fighting the temptation to eat some carbs to feel normal is really difficult.

Fndwheelie said:

As a T2 I have come off insulin. I was injecting over 50 units of Humilin I a day. I’ve adjusted my diet, and come off insulin albeit only a couple of months now, how sustainable it will be for me I don’t know. It seems you know what you’ve got to do, it’s just knuckling down and doing it. I would give improving your sugar levels with diet a good go first, keep your diabetic nurse involved closely as cutting carbs and not adjusting insulin can lead to hypos. If you get no or little joy with diet alone then maybe push for further tests, if it turns out your a type 1 or 1.5, then coming of insulin maybe impossible.

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I have massively improved my diet so am hoping it will help and I can keep the amount of insulin to a minimum. I'm still in mild ketosis all the time, so suspect there's defintely a deficiency there but as I've said in other posts, I'm also worried I'm resistant as well. It's encouraging to know you managed to get off 50 units. I'm currently only taking 8 units of Humulin I and also using humolog to match the carbs I do have (now relatively low between 20-40g). The humolog seems to work reasonably well but at the moment the big bounce in the morning seems like it is putting me back to square one. I suspect the background will need to go up - I am in regular contact with the nurses.

Fndwheelie said:

@stevew242 I have quoted my post from another thread which goes into more detail on my journey. I’d been diabetic for about 3 years before taking action, I only used humilin I twice a day injection. Right now I’m still on VLCD shakes, and about 3 meals a week, I don’t know if I will be able to sustain going without insulin when I return to food. However when I did slip up one time and had a large pizza to myself I never went above 10, previously a pizza would put me in the 30s, so I’m hoping that it’s a sign my body is managing carbs and insulin better.

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I'd recommend the ketogenic diet when you start eating- it worked really well for me. I only got myself into a mess by allowing too many carbs in over a period of time due to work and personal stress. There's no absolute need for carbs, your liver can make enough through gluconeogenesis. Also, don't be afraid of fat: it's probably about the best thing in terms of needing no insulin. Having said that, I do think fasting is good as well and have been very interested in the work of Jason Fung. If you are worried about fat, I can send you info on why not to be and, from my own experience, my cholesterol profile improved significantly (not that I think cholesterol is a problem in itself, but can be a surrogate marker) when on keto.

LittleGreyCat said:

@stevew242 I wonder about the ketone levels and their significance.

OMAD will almost certainly mean that you spend some of your day in ketosis.

A ketone level of 2.2 is reasonably normal if you are on a ketogenic diet.

The issue is if you are generating ketones because your body can't process carbohydrates for energy any more, not because it doesn't have enough carbohydrate in the diet.
High BG is a major indication of this so your health team are wise to be taking all precautions with your treatment.

You say you are still producing some ketones. About how many?

You also talk a lot about OMAD and ketogenic diets; is your current eating regime one that might encourage ketone production? It would be ironic if you were taking insulin to suppress ketogenesis when on a ketogenic diet, then having to top up with carbohydrates due to lack of ketones.

Anyway, T2D can be progressive and require a slow increase in medication.
I have been diagnosed over 11 years now, and just gone up to 4 * 500 mg Metformin a day.
Perhaps if I live long enough I will one day need insulin, but there are another couple of steps in the protocol before that is mandated.

The people with the best results for remission seem to be those who are carrying a lot of extra weight on diagnosis and manage to shed enough quickly to get the fat out of the internal organs before they are seriously damaged. Unfortunately I don't fit that profile.

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Interestingly, one meal a day didn't mean ketones when I first started that regime over 5 years ago as I started the day with a surge of glucose thanks to dawn phenomenon and a lot of resistance. It was only when glucose levels started to come down as I appeared to "empty out" of glucose that I got into ketosis. When I reached the peak of post-diabetes health around 2014, glucose was low and I was in ketosis a fair amount of the time. Nobody was worried as all biomarkers ok, HbA1c all non-diabetic etc.

What has happened this time around is that I've been eating poorly, allowing things in that I used to be strict about and I'd allowed myself to have beers instead of wine when I drank because I decided I missed it and was too fed up to resist. I'd estimate that for most of the last 12 months I'd probably had 100g of carbs at least and glucose levels started around 17mmol/l and rarely dropped below 14. All of this probably should have meant weight gain, but it didn't -for most of the year my weight remained stable and then in the last two months I reckon I'd lost a stone without trying. Weight loss normally happens due to low insulin, and although I had lost weight due to work stress in the past, I felt different this time. So, I got some ketone test strips to see what was going on 2.2 mmol/l at the same time as BG of 17. For an experiment, I bought a sandwhich to give myself about 40g carbs (this was before any insulin prescribed), ate it and waited for an hour or so and measured again. Ketones were at about 1.8 and BG had risen to 20. The nurses say they're treating me as late onset type 1 for the moment as the symptoms present like that. They're keen to see if the ketones can be brought down, which are hovering around 0.5 most the time now even if I have carbs with a meal and inject, even though BG still above 10 much of the time. If I miss the overnight humulin I dosage after eating 40g carbs and using rapid acting, I go back up towards 2 mmol/l pretty quickly along with 17mmol/l for BG. The key thing is that this never used to be the case and due to insulin resistance (and high circulating insulin) it was always a real struggle to get into ketosis - now it seems hard to get out.

Something has definitely changed and for some reason I think my pancreas has shut down partially at least. I suspect I've pushed my luck too far and it probably won't recover. I had hoped that someone may have had a similar experience of managing to achieve remission twice I suppose. It all is the same as when I was first diagnosed but I was able to get myself off everything then and achieve good control if I was sensible.

At the moment, I'm not aiming to be ketogenic as I'm just going along with what I'm being asked to do. I've mentioned it as something that worked very well in the past. When I get stability and a bit more info on what's going on (and feel better), I'm going to try it again as a way of getting more weight off in a deliberate, controlled way rather than it happening despite doing things that should make it unlikely. I'm basically hoping that having been stupid, I can pull myself back together.