Mody diabetic.. and struggling

[Alexemily]

Hey, lovely to read some of these posts and feel like there’s a lot of positive stories here!

I have been self funding the freestyle libre for a while now through pregnancy and ever since, my HBA1Cs have always been really positive, however I’m sure it’s because according to the freestyle during the night my sugars are between ‘LO’ and 4 (I know they can be a bit inaccurate but every single sensor I have says I’m mostly in the red all night, my after meal spikes are horrific but come down pretty quickly, so I just feel like no matter what my ‘average’ is always going to be OK..

I’ll be honest my diet is horrific I can happily eat entire packets of biscuits/chocolate bars/cakes etc. I’ve always been quite skinny and now wonder if it’s actually more of a case that my body isn’t storing the sugar I’m eating because my spikes are so high (12-18ish) to avoid the spikes I obviously need a few units of insulin but then no matter what end up having hypos around 2/3 hours after meals.. I know in an ideal world I would have 5/6 tiny little meals a day but realistically this will never happen! Most the time I’m healthy with meals ish, salads/soups but I am terrible with all things sweet/chocolatey!

The consultants are so laid back because my hba1c is in the pre-diabetic range but What I would love to know is does anyone actually know does that mean I will avoid complications? Or is it the spikes that are dangerous?

And also my blood sugars are really positively affected by exercise, if I go for a walk immediately after eating a lot I can avoid the spike altogether! however does this actually avoid any damage to my body altogether or does it just actually speed up the damage because my bloods pumping faster around my body?

Thank you

 

[EllieM]

however I’m sure it’s because according to the freestyle during the night my sugars are between ‘LO’ and 4

I would strongly advise setting an alarm to do a blood test in the night to check this. Many people report that libre under-reads when you lie on it. You may be stressing unnecessarily.

Spikes aren't ideal but to be honest there are plenty of us posting on these forums who've been T1 for decades (almost 5 in my case) and are still fine, so I'd be inclined to agree with the consultants.

Personally, in your position, I'd 100% go for the exercise. Hard to see how your body could be damaged by avoiding the spike, plus exercise is really really good for you in so many ways.

Have you looked at the reactive hypoglycaemia forum here? I'll tag @Lamont D and @Brunneria to see if they can add anything useful, as they are pretty knowledgeable about that issue. My gut feeling is that you might find that a low carb diet would help you no end - (I know sugar is addictive but I've found that the cravings go after a couple of weeks.)

 

[Brunneria]

Hi and welcome!

If you are diagnosed as MODY then my input from a T2/RH point of view really wouldn’t be beneficial for you. Very different conditions!

However, many experienced insulin users have learned to pre-bolus. This is where careful timing of the bonus injection reduces the spike and avoids leftover insulin causing hypos. Obviously, I have never done this, so I will tag in a few T1s who I think use the technique. @Juicyj @Mel dCP @therower

Juicyj and @helensaramay also use exercise to control blood glucose and reduce insulin resistance.

There is also a technique called sugar surfing that you may find interesting to learn about.

Also, @Knikki has plenty of experience in eating cakes and carby treats, so he may have some pearls of wisdom in adjusting/timing his insulin to deal with them.

Basically, I am tagging in anyone I can think of who may have experience/techniques to deal with what you are going through.

It may help them if you describe your current insulin regime. Brand of insulin, how you time your doses, that sort of thing. Different insulin’s have different ‘profiles’ (which is basically how long they are effective for), and knowing what you are currently on, may help them to answer your query.

I should warn you though, that no one here can advise you on dosage. That is between you and your healthcare team. But they may well be able to talk about their own experiences, and insulin management techniques that work for them.

Hope that helps.

 

[Deleted Account]

Thanks @Brunneria for the tag.
Whilst I don’t use exercise to control blood sugar and reduce insulin resistance, I strongly recommend exercise for the many benefits such as strengthening cardiovascular system, stress management, socialising, spending time outside, bone strength, and just generally feeling better.
I exercise most days and find when I don’t I need more insulin so also improves insulin sensitivity and cardio exercise reduces my BG.

 

[Juicyj]

my sugars are between ‘LO’ and 4 (I know they can be a bit inaccurate but every single sensor I have says I’m mostly in the red all night,

Hi Alex - please check any LO readings against a glucose meter, the libre is inaccurate at night time in reporting false lows, so always check if you can.

I've become more interested in exercise since my diagnosis as I find it helps me manage my levels better, although if I exercise and i'm above 12 then I struggle a bit if i'm running, think of a Ferrari running on oil, sluggish and not performing well, not that i'm a Ferrari though !!! I definitely would go for the exercise though it's great for mental and physical well being. I tend to be quite relaxed about spikes as long as you're correcting and have active insulin on board to bring it down, it's also temporary, ongoing then it's an issue.

 

[KK123]

Hi @Alexemily, I've only been diagnosed for 2 years but the conclusion I have come to is to treat what you choose to eat as the other half of the medicine you need to keep you alive and healthy. I think of it as I wouldn't take an overdose of insulin or no insulin at all and I treat food the same way. By that I mean I would not have an overdose of food (ie, the packets of biscuits at a time and loads of chocolate etc) because for me that is a one way ticket to a roller coaster day of playing catch up. I do not follow a very low carb diet and I do have higher carb foods but in a controlled manner and with an idea of how much insulin I need to counteract it which I get wrong many times. I am only able to do this by keeping the carbs reasonably low, I would not know where to start in trying to inject for a whole packet of biscuits. I know it's easy to say change your diet and of course you may not want to but if you are concerned about the spikes, well you have to do something and I would say that starts with a diet overhaul. It seems clear that your body does not cope or process carbs very well even if you are skinny so why put it under so much pressure? x

 

[Alexemily]

I would strongly advise setting an alarm to do a blood test in the night to check this. Many people report that libre under-reads when you lie on it. You may be stressing unnecessarily.

Spikes aren't ideal but to be honest there are plenty of us posting on these forums who've been T1 for decades (almost 5 in my case) and are still fine, so I'd be inclined to agree with the consultants.

Personally, in your position, I'd 100% go for the exercise. Hard to see how your body could be damaged by avoiding the spike, plus exercise is really really good for you in so many ways.

Have you looked at the reactive hypoglycaemia forum here? I'll tag @Lamont D and @Brunneria to see if they can add anything useful, as they are pretty knowledgeable about that issue. My gut feeling is that you might find that a low carb diet would help you no end - (I know sugar is addictive but I've found that the cravings go after a couple of weeks.)

I’ll have a look at that forum now thanks! Yes your definitely right, I have no trouble with typically carby carbs, a roast I’m happy to skip the potatoes etc always happy with a salad instead of chips it’s really just the sugar/sweet side of things I’m failing- when you say the cravings go, did you go cold turkey or follow anything in particular? I think I need some help with my diet if I want to change it successfully, this is all really motivating though, thanks!

 

[Alexemily]

Hi and welcome!

If you are diagnosed as MODY then my input from a T2/RH point of view really wouldn’t be beneficial for you. Very different conditions!

However, many experienced insulin users have learned to pre-bolus. This is where careful timing of the bonus injection reduces the spike and avoids leftover insulin causing hypos. Obviously, I have never done this, so I will tag in a few T1s who I think use the technique. @Juicyj @Mel dCP @therower

Juicyj and @helensaramay also use exercise to control blood glucose and reduce insulin resistance.

There is also a technique called sugar surfing that you may find interesting to learn about.

Also, @Knikki has plenty of experience in eating cakes and carby treats, so he may have some pearls of wisdom in adjusting/timing his insulin to deal with them.

Basically, I am tagging in anyone I can think of who may have experience/techniques to deal with what you are going through.

It may help them if you describe your current insulin regime. Brand of insulin, how you time your doses, that sort of thing. Different insulin’s have different ‘profiles’ (which is basically how long they are effective for), and knowing what you are currently on, may help them to answer your query.

I should warn you though, that no one here can advise you on dosage. That is between you and your healthcare team. But they may well be able to talk about their own experiences, and insulin management techniques that work for them.

Hope that helps.

That’s really helpful thank you! Ooh it’s like a new language I’ll get searching/googling.

Thanks I’m on a ‘brand new super super fast acting’ insulin apparently try and help the spike/hypo problem but tbf the main issue seems like my diet

Thanks again.

 

[Alexemily]

Thanks for the tag @Brunneria

Yep I'm a cake eater but for me it is "all things in moderation" for instance I love Jaffa Cakes but will only eat one or two at a time never a whole packet. I also keep an eye on my BSL and will inject a small amount of insulin for the cake etc, but most of the time it is a bit of a guess.

I do exercise but not just to control blood sugars but mainly because I want to look good on the beach bit like @helensaramay and also for many of the same reasons.

Spike are a pain but unless you start spiking at 20+ then the damage done will be minimal if nothing at all. Saying that if you were to say run at 15+ for a year or more (some do) then I think damage would be evitable.

If you use exercise to get the spikes down then go for it, I really don't like spikes but they do happen.

Take care.

That’s nice to hear about the spikes thanks, after two pregnancies with targets of between 3.8-7.8 100% of the time anything above 8 makes me feel full of guilt!

I need to work on my moderation. If anyone’s ever read anything helpful/ has any practical advice I’d welcome it. I guess my binging habits problem stem from somewhere, it’s one of those things I kind of assumed everyone did it.. but maybe not!

 

[Alexemily]

Hi @Alexemily, I've only been diagnosed for 2 years but the conclusion I have come to is to treat what you choose to eat as the other half of the medicine you need to keep you alive and healthy. I think of it as I wouldn't take an overdose of insulin or no insulin at all and I treat food the same way. By that I mean I would not have an overdose of food (ie, the packets of biscuits at a time and loads of chocolate etc) because for me that is a one way ticket to a roller coaster day of playing catch up. I do not follow a very low carb diet and I do have higher carb foods but in a controlled manner and with an idea of how much insulin I need to counteract it which I get wrong many times. I am only able to do this by keeping the carbs reasonably low, I would not know where to start in trying to inject for a whole packet of biscuits. I know it's easy to say change your diet and of course you may not want to but if you are concerned about the spikes, well you have to do something and I would say that starts with a diet overhaul. It seems clear that your body does not cope or process carbs very well even if you are skinny so why put it under so much pressure? x

That’s a really good outlook, It makes perfect sense. I’m not sure whether I’m just being ignorant with my diet or it’s something deeper but I do know I need to make changes, I’ll start small or I’ll have no chance keeping it up. Are you able to keep this in mind 100% of the time or does it ever go out the window? I wish I had that willpower!

 

[Jamesdbrickell]

What insulin are you on, is it basal / Bolus or just Bolus for meals?

 

[Alexemily]

What insulin are you on, is it basal / Bolus or just Bolus for meals?

In the 8 years of being diabetic I’ve never heard those words but I think I can guess, bolus? it’s a very fast acting insulin that I should take before I eat anything, within 5 minutes of eating (was previous novorapid which they said I should take 15 minutes before eating but now it’s a new faster acting version of this)

Tried a long acting once in pregnancy (is that basal then) when i was very very insulin resistant but had even more hypos than usual

 

[Jamesdbrickell]

Hi I’m type 1 and yes Bolus is another name for quick acting and basal long acting.
I expect it is fiasp they have given you now replacing nova rapid.
I have just done a dafne course and we learnt that you will get spikes after eating but it is the bg result after 4 hours that matter as this is when the insulin generally wears off. The spikes will occur because no matter how good you are you will never be as good as what your body can do when it works properly.
I can spike at over 20 but be back in range after 4 hours. It might be that you are giving a bit too much insulin when you eat to stop the spike but once the food runs out it is causing you to hypo. Bolus Insulin lasts about 4 hours and for me it can be nearly 5 until it stops working.
It might be an idea to reduce the insulin slightly see what happens over 4 hours and ignore the initial spike. It takes insulin 2 hours to have most effect. If you hypo take some carbs to correct.

 

[Alexemily]

Hi I’m type 1 and yes Bolus is another name for quick acting and basal long acting.
I expect it is fiasp they have given you now replacing nova rapid.
I have just done a dafne course and we learnt that you will get spikes after eating but it is the bg result after 4 hours that matter as this is when the insulin generally wears off. The spikes will occur because no matter how good you are you will never be as good as what your body can do when it works properly.
I can spike at over 20 but be back in range after 4 hours. It might be that you are giving a bit too much insulin when you eat to stop the spike but once the food runs out it is causing you to hypo. Bolus Insulin lasts about 4 hours and for me it can be nearly 5 until it stops working.
It might be an idea to reduce the insulin slightly see what happens over 4 hours and ignore the initial spike. It takes insulin 2 hours to have most effect. If you hypo take some carbs to correct.

That’s really helpful thank you, it’s definitely the case too, I would say I wouldn’t actually need any insulin to hit targets after 4 hours, I’m usually back to normal after 2 without insulin as long as I’ve been slightly active after eating and it’s not been a massive meal, but in pregnancy they were very clear that 1 hour after starting to eat you should be back within the ‘normal/non diabetic range’ of under 7.8 as if not this was dangerous for the baby, I would really just like to understand if the slight spikes of 10/12 are anything to worry about or not, ie they wouldn’t happen to a non diabetic person so surely it is causing damage somewhere? Or not? I really don’t know. And do this spikes mean that your not going to gain weight as easily from the sugar you’ve eaten compared to a non diabetic person? (Which does seem to be the case for me) and surely must be dangerous.

I’m one of those annoying people who just wants black/white answers but to understand everything behind them

 

[Jamesdbrickell]

We covered pregnancy in dafne and you have to have tighter control with the baby also carrying a baby will pull your bg down.
Personally I wouldn’t worry now I understand how it works.
Basically when you inject you do so into the inter cell fluid. The insulin has to be drawn into the blood. It needs to go where it’s needed. In a non diabetic it goes direct into the blood so works quicker so reduces the spike.
If you are constantly having to eat to maintain your bg you will gain weight as you will eat more, if you ignore the initial spike and don’t need to eat as much you will not gain weight. If you are not correcting the low bg you can get bad hypos which could be worse.
It is a balancing act to get it right.