Living without taking insulin, an experiment

[Thundercat]

Not wanting to rain on your parade, but if you are Type 1 this experiment can't work. Also very surprised that a doctor would back this experiment. As already stated, there will be a need for at least basal insulin. Be careful and look after yourself

Sent from the Diabetes Forum App

 

[czj]

Interesting experiment. You appear to be doing it under controlled conditions, with medical supervision, and for a much shorter period than many T1 have before being diagnosed and put on insulin so I guess the risks to you are low.

I can offer only anecdotal support for your theory. About 22 years ago I went on a weeks outward bound course in the mountains of the west coast of Ireland. By the time I came back my pre-meal soluble dose was down to just 2 units, on average. (This was before I was blood testing, so can't say the actual levels). Clearly I liked being so much fitter than I had been before I went, but the low dosage wasn't great.

By that I mean, before the course, when I was taking say 8 units / meal, if I injected a tad under or over due to a margin of error in drawing up the insulin, it made little difference. When I was injecting just 2 units then injecting 1.8 units or 2.2 units was pretty significant, and I had many more hypos.

The effects wore off in about a month, and I was happier being back on a dosage that allowed a little margin for error.

I'll be interested to know what your experience turns out to be.

 

[noblehead]

3 sounds good Adam. Just be prepared because exercising isn't always possible (times of illness/family commitments etc) so do have a contingency plan in place for these occasions, good luck with your book also!

 

[Ambersilva]

I know that being without an insulin response or injected insulin can be very dangerous for a Type 1 diabetic. But I did know identical twins who both had type 1 diabetes. Both twins were medical doctors. One chose to manage diabetes with insulin. The other managed her diabetes on diet alone. Both twins lived to a great age (over 80) with the twin managing with diet alone outliving the insulin treated twin.

I would be concerned about diabetic ketoacidosis (DKA) which becomes very dangerous very quickly. No way would I create a situation that could lead to a repeat of that experience.

 

[phoenix]

Amber
, It may be that your twins didn't have T1 but some form of MODY. These forms of diabetes weren't known about then. Even today a recent study in the US found that 93% of cases weren't recognised and were misdiagnosed as either T1 or T2 (depending to a large extent on age). Some forms of MODY respond well to diet/exercise others oral meds and some still may need insulin (though often lower doses)
In the video at the link below, Prof Hattersley from Exeter, describes some of the types . He includes the recent discovery that has shown that every case of those diagnosed with diabetes under 6 months of age have a type of MODY It seems that most (90% in a trial) respond well to sulfonylureas and are able to stop insulin and have better control than when they were on insulin *

http://www.medscape.com/viewarticle/807533

 

[Ambersilva]

Phoenix,

Thank you for your comment, but in this case I do know that the twins were diagnosed Type 1 as children. Why would they say they were Type 1 if they were not?

BTW, I cannot access your link without a username and password.

 

[phoenix]

Amber, I don't know why it does that, I wasn't logged in. I do have a Medscape password but not on this computer. If you google Medscape subgroups of MODY Hattersley. You should be able to get it, well I can. The video is only 8 min long but well worth watching.
As I said, they may well have been diagnosed as children but no-one knew about anything about MODY then. They weren't able to isolate genes. When they were diagnosed over 60 years ago they didn't know that T1 was an auto immune disease either.
One study, from last year looked at 586 people diagnosed as T1 before the age of 20. Eight per cent of them had MODY.
http://press.endocrine.org/doi/abs/10.1210/jc.2013-1279

 

[Ambersilva]

Well Phoenix,

As you are so into proving and disproving diagnosis with internet research, can you explain why my son was diagnosed Type 1 in his late teens 20 years ago and me diagnosed Type 1 just four years ago at the age of 63? Something in the genes perhaps?

 

[phoenix]

.Adam,
I'm glad you have revised your experiment. I certainly find exercise makes the biggest difference in my insulin sensitivity and hence the amount I take (sorry that I have hijacked your thread a bit)

Amber, I just don't believe that someone who has T1 ie almost nil insulin can survive on diet alone. Early in this thread there is a description of what happened pre insulin. The easiest answer to those Twins is another type of diabetes which is not insulin dependent.
As to T1 genes, the predisposition to develop T1 (together with other autoimmune diseases) is linked to gene patterns. on a specific chromosome. That's the reason that people often develop more than one autoimmune condition; coeliac disease, autoimmune thyroid disease and T1 are associated with similar genes. However, even though there is a predisposition, not everyone with that gene pattern will develop T1 ( in fact the vast majority won't).
The thing that triggers it might be one or more of lots of things (they've suggested many possibilities from cows milk to viruses to modern plastics It's not like MODY which is caused by a directly inherited mutated gene.
This is a good introduction:
http://ghr.nlm.nih.gov/condition/type-1-diabetes
They haven't really done that much research on adult onset T1 genetics however there seem to be similar genes to those associated with childhood onset involved.
It may be that those of us who develop it at a later age have a gene that is protective against childhood T1. They still have to genotype many more groups of us to find out.
This paper explains it but is quite hard to understand
http://diabetes.diabetesjournals.org/content/60/10/2645.full (,I had these already bookmarked. I'm doing a genetics course so naturally I'm interested in the genetics of diabetes)

If you're interested, you might also like to look up about Neanderthals and autoimmune disease; we might have them to blame!

 

[Ambersilva]

Thanks Phoenix. I shall try to get my head round the text sometime! When my son was diagnosed I asked many family members whether they knew of any T1 diabetics in the family but all enquiries were negative. Imagine my surprise four years ago.

Adam, I have experimented with ultra low carbing with minimal insulin. Everything is fine if I am only pottering around the house but if I attempt a country walk I quickly run out of energy. BS rises because there is not enough insulin to take the sugars to the cells and an enormous effort is required just to stand up.

 

[ElyDave]

It will be interesting to see what happens today for me.

Woke up this morning, tested at 5.3, 7.5km run, retested at 5.6.
4 units levemir as basal.
Breakfast 30 g carbs, 1 unit novorapid.

A reduced morning dose becasue I will be walking around site all morning and I know that even a small amount of low grade exercise can result in a rapid blood sugar drop if I have any circulating novorapid.

I am expecting a short term spike though before I get to site.

 

[-Artemis-]

Really interesting info all - especially the autoimmune stuff/likelihood of other auto-immune conditions - as I have.

Exeter university also published a study recently that showed a very high proportion of t1's do actually produce very small amounts of insulin... It's tiny, not enough to cover meals etc - but it was groundbreaking as showed not all the beta cells are destroyed and that there is still some function: which previously wasn't thought to be the case, plus if there is still even the tiniest amounts of function, then there's a higher chance of them finding some other way to help... I'll see if I can find the article again...


Sent from the Diabetes Forum App

 

[benunited]

Fascinating thread. I found it just as I was logging on to ask for some advice if anyone can help?

I've been T1 for around 12 years and after probably more than a decade taking the view 'eat what I want, just inject accordingly' I'm finally taking diabetes as seriously as I probably should.

I'm possibly half a stone to a stone overweight, though I love exercise and used to be super fit back in my 20s and I've run a few marathons over the last few years.

I decided my Christmas break would be a bit of a 'boot camp' holiday and I've been working out once or twice every day, usually an hour of circuits and an hour or more on the treadmill a day, sometimes two hours running.

The impact on my BSL has been significant. Previously I'd be in the 7-11 range a couple of times a day. Now I'm usually 5-8, with quite a few below 5 and 4.

I think I read that exercise is great but if you're continually exercising the impact on BSL and insulin sensitivity is increased even more by the cumulative effect. Not sure if that's right.

Anyhow, I've been adjusting my diet, partly because it needs to be better and also because when I exercise I don't feel as hungry. To get to my actual question... is it OK to not have fast acting insulin for some meals?

I take lantus overnight as my 24 hour insulin and novorapid whenever I eat. But this week I've found myself not needing the novorapid.

Take yesterday as an example:

Morning BSL was 6, so that's good. Breakfast was 1 slice of toast with 2 units of novorapid. Normally I'd have needed 3 units and although I reduced it to 2 I had a hypo soon after and needed juice and an apple.

Lunch BSL was 7, so that's good as well. Had potato and leek soup and 2 digestives. Took 5 units. Had 2 bananas spread out over the afternoon / early evening.

Yesterday evening was my rest day from exercise. BSL was 3.9 before evening meal, which was steak and vegetables. I calculated that to be 15g of carbs and decided against taking any novorapid, thinking I'd maybe be around 8 or 9 before bed. In fact I was 4.4 so I had some fruit.

This morning I was 6 again and for breakfast I had some natural yoghurt, which had just 2g of carbs, so I didn't take any insulin. Two hours later my BSL is 8.7. If I'd taken 1 unit of novorapid I'd probably be lower, but I'd possibly also be hypo and needing something to eat.

Sorry for the long post! Wonder if anyone can advise if your body always needs regular insulin to help the body function properly or is it likely to be OK if my diet and exercise means I don't need to take any with either 1 or possibly 2 meals a day.

I'll never want to be in a position where I don't need any insulin but a day like yesterday where I didn't need any with my evening meal or this morning with my breakfast could become the norm.

Thanks for any advice!

Ben

 

[SamJB]

Hi Ben, if fast acting insulin sends you hypo, then yes it's ok to not take it for a meal. You must, however, take your long acting insulin. As explained earlier in the thread, it will increase your risk of cancer (and DKA) if you have no insulin in you.

 

[benunited]

Thanks Sam, much appreciated!

 

[benunited]

I've also been wondering about the link between insulin and exercise.

In the past most of my exercise has been cardio - running, football mainly - and I've always taken on some carbs before and sometimes during the exercise to keep me going as after an hour or so the exercise will usually decrease my BSL.

Recently I've started doing circuits and weights and I've found that can have the opposite effect.

Last week, first thing in the morning I went to the gym and my BSL were around 6. I didn't eat anything (probably should have) and didn't take any fast acting insulin. After exercise my BSL were 18.

I tried to read about it and apparently as my body didn't have any insulin my body was dumping glucose from its stores into the bloodstream.

OK, lesson learned? I need to have at least some insulin in my body before exercise?

So a day or so later, first thing in the morning BSL were around 6 again. This time I had 2 slices of toast, which would normally be 5 or 6 units. So instead I had 2 or 3 units.

Result? Hypo after 30mins workout.

To be honest, I'm really not sure what's happened here. Any advice again much appreciated as always!

Thanks

Ben

 

[-Artemis-]

Just following on from my comment this morning, here's the article I referenced about the recent discovery that type 1's (mostly) are still producing insulin; even if in very small amounts:
http://www.exeter.ac.uk/news/research/title_324655_en.html

 

[SamJB]

Ben, when you do exercise more insulin receptors come to the surface of your muscle cells so that they can soak up glucose at a faster rate. This is what causes post exercise hypos. High intensity exercise stresses your body and it releases glucose in response to this.

Imagine in the evolutionary past that one of your descendants was involved in chasing a hunted Animals, or we're being chased themselves! That bit of glucose produced by their body would have come in handy.

Weights makes my BGs go up, a run over 4 miles makes it go down, a game of rugby they stay static. It's a case of trial and error and keeping things as consistent as possible; intensity, quantity, time after fast acting insulin.

 

[benunited]

Ben, when you do exercise more insulin receptors come to the surface of your muscle cells so that they can soak up glucose at a faster rate. This is what causes post exercise hypos. High intensity exercise stresses your body and it releases glucose in response to this.

Imagine in the evolutionary past that one of your descendants was involved in chasing a hunted Animals, or we're being chased themselves! That bit of glucose produced by their body would have come in handy.

Weights makes my BGs go up, a run over 4 miles makes it go down, a game of rugby they stay static. It's a case of trial and error and keeping things as consistent as possible; intensity, quantity, time after fast acting insulin.

Thanks again Sam!

 

[cazgemuk]

I have seen a type 1 diabetic of over 23 years diagnosed with psychosis because of a similar experiment. It involved reducing novo rapid from 12 units x3 to 1/2 units x3 a day and 2 hours of exercise everyday. A psychiatrist said that when the body is under this much stress the brain is starved of blood glucose which can have effects similar to those of stroke victims who's brains are starved of oxygen. Please stop whilst you can hearing voices can mean not being able to take part in any conversation let alone work or study.