New T1D and mastered it?

[MichaelWM]

Hi there!

So I've had T1D diabetes since early December 2015. Totally unoriginal diagnosis story, ordered to A&E with a blood glucose of 50mmol/litre (aka caramel blood), and enough HbA1c to melt your face, y'know, the whole shebang.

Fast forward 8 weeks -- and a disgusting level of research and self-experimentation (I'm a science geek, student of molecular biology) -- I believe that I have T1D nailed. My blood glucose is consistently between 4-6mmol/litre. No hypos. No spikes. No dependency on carbohydrates for fuel. All whilst taking only 4 units of lantus per day (on gym days) and 8 units on off days. That's it! No boluses since I started this system of mines.

It's crazy. I've minimised any negative health effects that diabetes may have played in my future life, to that of a non-diabetic person.

I'm in better shape than ever, and have more energy and focus than ever.

Considering the **** I ate pre-diagnosis, I was probably a time-bomb for insulin resistance (due to meeting the demands of my high metabolism, and being a cheap student).

Is it a push to say that T1D was a blessing in disguise for me?

This is a message of recourse for any other newbies who may be panicking post-diagnosis, or for any veterans who have been dancing on a tight rope with type 1 diabetes for decades.

All is not lost, quite the contrary. It is possible to live a great life with this condition, if you arm yourself with the right knowledge.

And thank you for welcoming me to your forum!

I'll try and answer any questions.

Stay strong,

Michael

 

[noblehead]

Welcome to the forum @MichaelWM

Here's hoping your good progress and positivity continues. Best wishes.

 

[TorqPenderloin]

Is it a push to say that T1D was a blessing in disguise for me?

No, because I feel the same way. I just hope we both feel that way in 10 years.

You sound very similar to me and I was only just diagnosed in September 2015 myself. I'll say this:

At first, things were super easy. I found out that if I lifted heavy weights and ate less than 50g of carbs I didn't need insulin at all. That worked for about 3 months. I'm now at a point where things are still super easy, but I do need 12 units of Levemir (basal) every night before bed. Even though it hasn't happened yet, I'm mentally preparing myself for when it does become difficult to manage my diabetes.

Maybe you have figured things out and maybe it is this easy, but to be honest, I'm a bit skeptical. There are a lot of very smart and disciplined people on this forum, much more so than me, who struggle to manage this disease. I'd love to believe you are right, but like I said, I'm prepared if you aren't.

You seem confident and mentally tough which is why I feel comfortable saying this to you. My point isn't to discourage you, but to say that it's probably wise to hope for the best, but plan for the worst.

 

[Gaz-M]

welcome to the forum

 

[MichaelWM]

I'm mentally preparing myself for when it does become difficult to manage my diabetes.

I understand your concerns (many of the things you said resonate with the views of my dietician!).

I am glad you're sceptical, that's a trait I wish more of us had. However, there are a couple of points which I think you would appreciate, and maybe even put your mind at ease.

Firstly, I'm curious as to why you think that there is likely to be an impending demise in our diabetes control over time? I am aware of the so-called "Honeymoon period", yet I fail to see how this coming to an end would cause any detrimental health defects, given that you accommodate by increasing your insulin doses slightly. (This is in the scenario that I am eating a ketogenic diet (<50g of carbs/day like you mentioned).

My research for current method of treatment (my diet) is based off of the work of those who have had the condition for years, and who have treated it to the same success as myself, without any of the degenerative effects usually associated with diabetes, both over short and long periods of time. Namely Dr Richard Bernstein (T1D), Dr Troy Stapleton (T1D), and Dr Peter Attia (insulin resistant, though highly knowledgeable regardless).

Also, nice to meet you!

 

[tim2000s]

@MichaelWM, welcome to the forum. Whilst the renowned diabetologists you have mentioned have all done a lot of work to aid us in managing the condition, life throws many things at you whilst dealing with it and that includes both highs and lows. Whilst most of us find managing our condition by applying a low carb much easier, there are times where it's just not possible to avoid the highs, and those require a bit more work. There are also many on the forum who have managed 50 years with no complications, and who don't necessarily adhere to the principles of those you quoted.

In the meantime, enjoy your current control levels. You will have to make changes as time goes by, but make the most of it for now!

 

[azure]

The honeymoon period is like a cushion. It protects you to some extent so things can seem easy. As your own insulin production gradually declines and you need to take artificial insulin, you lose some control because that outside insulin isn't as clever or manageable as your own.

When I was first diagnosed, I only had 2 units of basal. Everything seemed ok. I had to work at control but my control was pretty easy. Now 20 years later I can see the difference and how much harder it is when you're pretty much totally reliant on exogenous insulin. My control is still very good, but it takes A LOT more work.

It's good that you've really got into researching and dealing with this condition, but be aware that things will change over the years and you might not be so fast to say you've nailed it. Diabetes is an insidious condition and it needs watching 24/7.

Keep up your positive attitude and keep up the good work Just be prepared for the time when things might change.

Edited to add that I eat approx 180g carbs a day and I have good control.

 

[MichaelWM]

@tim2000s Thank you!

Whilst I agree that life will indeed throw a curve-ball or two, and that high's and low's will show their ugly faces, I believe that a ketogenic diet (which as you rightfully say is not essential for everybody in maintaining good control) will drastically minimise the frequency of these episodes, as mirrored by the research. This is in addition to a more stable blood glucose average over time, as opposed to having to counteract a standard high carbohydrate diet with equally high levels of insulin, producing a see-saw (< is that how you spell it?) effect.

I followed the standard diet advice for the first week or so after diagnosis, and my blood glucose was all over the place (from 3-12mmol/litre). Now I am consistently between 4-6.5 given the new system.

Here's hoping for a long, sweet honeymoon. Though I am prepared to up the doses when it comes time to leave dream land.

Thanks for your concern and wise advice Tim!

 

[MichaelWM]

Edited to add that I eat approx 180g carbs a day and I have good control.

Hi Azure, nice to meet you and thank you for the thoughtful reply.

I'd like to add that whilst in a state of ketosis (adapting the body to running on ketones instead of glucose) means that extreme glucose fluctuations are rare, even shown in those post-honeymoon (got to love these terms they come up with right!)

Simply put, consuming glucose in food raises blood glucose. Low glucose consumption (sub 50g per day) will fail to spike blood glucose above base range (base range being glucose produced from gluconeogenesis in the liver, the process of producing glucose from protein).

Regardless of being in the honeymoon or not, if there is low consumption of carbohydrates then there is no need for the pancreas to produce increased levels endogenous insulin as there is nothing to counteract, and little need for high levels of exogenous insulin for the same reason.

or

maybe I'm just being naïve!

 

[azure]

Nice to meet you too

Yes, controlling carbs in your diet makes it easier for sure, as I've found that past a certain level of carbs in a meal my insulin to carb ratio needs upping. Some people would call my 180g a day low carb. I call it moderate. I work very hard to limit any spikes (eg by timing my meal bolus). We all have a level of carbs that suits us and that we're ok with (mentally I mean as much as anything)

I believe that you don't have to be in ketosis to have excellent control. But you do have to work hard.

I'm very sensitive to insulin and I think that makes it easier. When I was pregnant I got the normal insulin resistance (normal for pregnancy) and my insulin needs went up hugely eg basal almost tripled and my insulin to carb ratio changed enormously too. That was a challenge! ( and no, I wouldn't have low carbed then as some studies have shown cognitive issues in childhood for the baby). I think that gave me more sympathy for the people here who struggle with control. I learnt it's not always as easy for some people as it is for others, and that can be through no fault of their own.

No, I don't think you're naive I just wanted you to understand that it might not always be as easy as time goes by. Things like illnesses can totally throw your control. Stress too. I think life's taught me never to call diabetic control easy because after all these years I realise diabetes can be sneaky and sometimes you can get bad results through no fault of your own.

Looking forward to reading more posts from you

 

[Gaz-M]

I think you have done well so far BUT and it is a MASSIVE BUT, after having Type1 for such a short time your confidence may and probably will take a tumble, I was a child when diagnosed and things have come a long long way since then. What I will say is please do not get to confident so soon as things will change and I can assure you they will.

Just keep on doing as you are and I hope you will continue to be so in control for as long as you can, this illness is like a snake............ move wrong do wrong it will bite you and it will bite you very hard at times

 

[Westley]

Hi Michael, welcome to the forum.
As others above have suggested, what you have mastered so far is the 'easy mode'.

In my experience the difference between producing some of your own insulin and none is not just a matter of quantity.
Injected insulin is crude, imprecise, unpredictable and most of all slow to start and stop compared to your natural endogenous insulin. My understanding is that during the honeymoon period your pancreas still produces significant quantities of insulin, reacting as rapidly and automatically to changes as it should, but it just can't quite output enough in total. Helping it out with a daily basal could be the only reinforcement it needs at first, and allows it to keep taking care of the really tricky fine and rapid adjustments.

Over time though it will gradually change from being like an automatic self-driving car with a slight tendency to drift left, to one where you have to steer along the twisty road completely manually
and you can only see the road a few metres behind you, not where you actually are now
and sometimes turning the wheel by ten degrees will turn the car by eleven degrees, but sometimes by six
and when you turn the wheel it takes half an hour to start changing direction and four hours to stop changing
and you can't even rely on those delays being consistent...

I think my own honeymoon period took several years to fully fade out. I have much more experience now, but managing it is still a lot harder than it was in those early months.
It seems Bernstein and others believe that the honeymoon period can be prolonged by keeping insulin requirements low through low carbs (though you'll find that you can sometimes get surprising spikes from your liver and from protein, even without carbs).
I hadn't heard of this back when I was diagnosed, but if that is the case then I'd say it's well worth working hard to keep it going as long as possible.

 

[4ratbags]

Hi and welcome to rhe forum.

 

[lizdeluz]

Hi Michael, welcome to the forum.
As others above have suggested, what you have mastered so far is the 'easy mode'.

In my experience the difference between producing some of your own insulin and none is not just a matter of quantity.
Injected insulin is crude, imprecise, unpredictable and most of all slow to start and stop compared to your natural endogenous insulin. My understanding is that during the honeymoon period your pancreas still produces significant quantities of insulin, reacting as rapidly and automatically to changes as it should, but it just can't quite output enough in total. Helping it out with a daily basal could be the only reinforcement it needs at first, and allows it to keep taking care of the really tricky fine and rapid adjustments.

Over time though it will gradually change from being like an automatic self-driving car with a slight tendency to drift left, to one where you have to steer along the twisty road completely manually
and you can only see the road a few metres behind you, not where you actually are now
and sometimes turning the wheel by ten degrees will turn the car by eleven degrees, but sometimes by six
and when you turn the wheel it takes half an hour to start changing direction and four hours to stop changing
and you can't even rely on those delays being consistent...

I think my own honeymoon period took several years to fully fade out. I have much more experience now, but managing it is still a lot harder than it was in those early months.
It seems Bernstein and others believe that the honeymoon period can be prolonged by keeping insulin requirements low through low carbs (though you'll find that you can sometimes get surprising spikes from your liver and from protein, even without carbs).
I hadn't heard of this back when I was diagnosed, but if that is the case then I'd say it's well worth working hard to keep it going as long as possible.

This is a great metaphor. And, like you, when I was diagnosed, I knew nothing about honeymoon period and precious little about diabetes in total. I wish I could go back there and check it all out now.

 

[lizdeluz]

Hi Azure, nice to meet you and thank you for the thoughtful reply.

I'd like to add that whilst in a state of ketosis (adapting the body to running on ketones instead of glucose) means that extreme glucose fluctuations are rare, even shown in those post-honeymoon (got to love these terms they come up with right!)

Simply put, consuming glucose in food raises blood glucose. Low glucose consumption (sub 50g per day) will fail to spike blood glucose above base range (base range being glucose produced from gluconeogenesis in the liver, the process of producing glucose from protein).

Regardless of being in the honeymoon or not, if there is low consumption of carbohydrates then there is no need for the pancreas to produce increased levels endogenous insulin as there is nothing to counteract, and little need for high levels of exogenous insulin for the same reason.

or

maybe I'm just being naïve!

This sounds great. Being in ketosis has certainly helped me, it has been the way to go for me and I wish I'd understood it long ago. I must be 29 years post-honeymoon, at least.
Welcome to the forum.

 

[MichaelWM]

This is great, what a fantastic discussion we are having. I guess research only takes you so far before experience shows its worth.

If I may ask, what are the three biggest challenges which make controlling your diabetes the most difficult?

This information is golden.

Thank you ladies and gents

 

[TorqPenderloin]

Firstly, I'm curious as to why you think that there is likely to be an impending demise in our diabetes control over time? I am aware of the so-called "Honeymoon period", yet I fail to see how this coming to an end would cause any detrimental health defects, given that you accommodate by increasing your insulin doses slightly. (This is in the scenario that I am eating a ketogenic diet (<50g of carbs/day like you mentioned).

I don't want to take anything away from you and maybe things won't get more difficult. Either way, I know it's hard work and your success shouldn't be discounted.

I'm not concerned about detrimental health effect so much as I'm concerned about losing the "buffer" that is my little remaining endogenous insulin. The "typical" days don't concern me. It's the non-typical days that I'm still unsure about: traveling and not having a food scale handy, restaurants where I can't weigh my food and carb count, holidays and special events where it may make sense to occasionally break the routine, etc.

Either way, congratulations on your success so far!

 

[Diakat]

Things that make control hard:
Illness eg cold/flu
Unanticipated activity eg working late, run for train, train delayed on way, missing connection as a result so walking to another one. Then tying to get to over 5 but not too high so can drive once off train...
Family: sometimes the kids get in the way.

 

[tim2000s]

Hi Azure, nice to meet you and thank you for the thoughtful reply.

I'd like to add that whilst in a state of ketosis (adapting the body to running on ketones instead of glucose) means that extreme glucose fluctuations are rare, even shown in those post-honeymoon (got to love these terms they come up with right!)

Simply put, consuming glucose in food raises blood glucose. Low glucose consumption (sub 50g per day) will fail to spike blood glucose above base range (base range being glucose produced from gluconeogenesis in the liver, the process of producing glucose from protein).

Regardless of being in the honeymoon or not, if there is low consumption of carbohydrates then there is no need for the pancreas to produce increased levels endogenous insulin as there is nothing to counteract, and little need for high levels of exogenous insulin for the same reason.

or

maybe I'm just being naïve!

Whilst you are in the honeymoon, yes this is all valid, however, a word of caution. Eggs. As your endogenous insulin levels drop, protein starts to have much more of an effect than just background gluconeogenesis. One of the things your endogenous insulin does is help to suppress the action of glucagon on your liver (as it is taken up directly by the liver), reducing both the liver dump effect and also enhanced gluconeogenesis. Below a certain insulin threshold, the glucagon that your body releases in response to certain food types needs to be countered with exogenous insulin, to a surprisingly high level. The biggest issue being that currently, almost no exogenous insulin makes it to the Liver, unlike endogenous insulin, where it all does!

Likewise, with your current endogenous insulin production, you are unlikely to see much of a dawn phenomenon, but as that is reduced, once again, your body starts to do things that you have little control over and need to manage.

All things, however, that won't be affecting you at the moment, and the longer you can maintain a LCHF type diet, the longer you should be able to stave off much of this.

 

[Daibell]

Hi and welcome. It's likely that you will gradually need to increase your insulin and add the Bolus but in the meantime it's great that you need so little. Since starting my Basal/Bolus 2 years ago my Basal has needed to be increased and so has my Bolus ratio despite my weight staying the same (and fairly slim). I also find like Azure that if I have days of higher carbs than normal e.g. when I'm on a cruise (!) I have to increase my Basal by a few units as well as the Bolus to match the carbs. This increase is often needed for a couple of weeks afterwards.