Hello to all. Please could I ask for some help?knowledge?

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Tahero

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Type 1.5 LADA
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Hello all. I have recently been diagnosed with LADA diabetes. Originally it was thought it was steroid induced as I had been on quite a whack for an orbital decompression op for Thyroid eye disease.(I wear an eye patch as I'm in between ops currently) But the GP sent away some bloods for the anti-gad tests and it came back as Lada. In the past year after a lot of other tests I was also diagnosed as Coeliac.
So apart from not now having a clue of what to eat, as the Coeliac side is so new, I am trying to work out how to stop levels going so low.
This morning I walked to the train station about a mile away (I'm not allowed to drive anymore as the thyroid eye disease has unfortunately affected my sight) I live in the middle of nowhere, but I did make sure I took on board extra carbs, but when I got to the train station my blood levels went down and down until they hit 3.9......they finished at 2.6 when they then decided to recognise the dextrose I had taken , but this keeps happening whenever I even walk down the road with the dog. Surely that's not normal is it? Also I never have really eaten carbs heavily before and I seem to have more food on my plate than I've ever eaten in my life? The Coeliac side leaves me not knowing what to eat as it has also made me unable to have lactose.....but I'm sure there must be some of you in the same position? The part I can't fathom is not being able to walk anywhere without levels crashing?
 
Welcome @Tahero 🙂 Lots of Type 1s diagnosed in adulthood here (LADA is just a form of Type 1) so you’re not alone.

What insulins do you take? As you’re recently diagnosed, you’re probably still making some insulin of your own. This tends to kick in erratically, and is often too much too late, so that doesn’t help. How long after your meal are you going low? Are you carb-counting and adjusting your mealtime insulin ?
 
Welcome to the forum @Tahero

Sorry to hear about your recent diagnoses, and how tricky your are finding it to balance the needs of multiple conditions :(

There’s often a degree of guesswork in the initial doses that are suggested for people. There aren’t any hard and fast rules, so the medics have to make their best guess and then adjust to suit a person’s individual insulin sensitivity.

Which as @Inka says, can be especially difficult if the last remaining beta cells get a bit of a second wind and “help out” with an unpredictable amount of homegrown insulin from time to time. 😱

I am another person who has to be quite careful about exercise or activity when I have remaining Insulin on Board (IOB), as even moderate walking seems to supercharge the insulin action and risks me going low.

Sometimes I reduce the meal-dose before to accommodate this different sensitivity to insulin, but other times I’ll just chomp a Jelly Baby or similar as I start walking. I can also adjust my basal as I’m on an insulin pump, which is one of the big benefits of that tech for me.

Hope you start to bulld a menu that suits your coeliac, and can then work out doses for those meals that suit your diabetes 🙂
 
Hello both . Thank you for your replies. So I take Lantus and Novarapid.......we keep dose adjusting but it still keeps crashing.
Up until two years ago I was a professional dancer and touring musician so always on the go....and that is still my mentality I'm afraid. This all happened at once apart from thyroid problems which came on years ago....but the last lot all at the same time ISH.
I don't actually take a lot of insulin but whatever I do take seems to crash it down. I do carb count but the ratio I could almost eat the whole supermarket for one unit.....and then it still crashes?
I've never eaten a lot of carbs , basically because I don't like them, as in the taste etc, even more so now it's the gluten free stuff! (It's not the same is it!) But I keep getting told eat more carbs, which then just makes me want to lay on the floor and sleep.
I just get told you can't live on meat veg and potatoes for the rest of your life....but I've got to 48 and so did many generations before me live on that? I also get to told to take the insulin even if I'm not having any carbs in a meal? But if I'm carb counting and the total carbs is 0 why would I take the Bolus insulin? I understand I need to take the Basal.
Today it went from 10.9 to 2.6 in four minutes?

Sorry to write so much but I'm just so confused. There are days when blood levels stay stable and you think....well maybe I haven't got it? And then the next day it's all over the joint, and I think....oh maybe I have.
 
Tahero said:
But I keep getting told eat more carbs, which then just makes me want to lay on the floor and sleep.
I just get told you can't live on meat veg and potatoes for the rest of your life....but I've got to 48 and so did many generations before me live on that?
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I’m going to tag-in @rebrascora who is a member who chooses a lower carb approach to manage her T1. It isn’t necessary, but it is certainly doable. Meat, veg and potatoes sounds perfectly well balanced to me!
Tahero said:
I also get to told to take the insulin even if I'm not having any carbs in a meal? But if I'm carb counting and the total carbs is 0 why would I take the Bolus insulin? I understand I need to take the Basal.
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Well that is quite odd advice. And not really in the spirit of the basal:bolus system. Where you should be able to delay or skip a meal because your basal insulin will cover your ‘background’ needs. And you only need to cover the carbs in meals with rapid insulin. The only complexity comes where carb levels are quite low, body starts looking towards proteins and fats to generate glucose for the brain. So you may need to factor that in, but the timing is different as the conversion is harder work than carbs which are easy pickings.
Tahero said:
Today it went from 10.9 to 2.6 in four minutes?
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Yikes! That’s a rapid drop, and could have been some home-grown insulin reacting to the 10.9 and slightly overdoing it?

Or perhaps your basal is set a little too high? Your BGs should stay roughly level if you skip a meal (and take no meal insulin). But I wonder if yours might be trending slightly downward overall? The need to constantly ‘feed’ the insulin that you describe can be an indicstion that things aren’t quite right with your doses.

You can check your basal dose for yourself as described here:
www.mysugr.com

How To Successfully Test Your Basal Rate

Are you looking for basal rate information and testing instructions? Perfect! You're in the right place!
www.mysugr.com www.mysugr.com
 
Thank you very much for all your help. I am just at the point where I think I have something sussed....and then I don't.
 
@Tahero Do you have a half unit pen for your Novorapid? If not, that’s crucial. I’m slim and sensitive to insulin (and exercise) and the ability to have smaller, more accurate boluses is crucial. I know you were using hyperbole but if you feel you can eat the whole supermarket for one unit of insulin, it sounds like you might be on too much basal (Lantus) and that’s pushing you down through the day. It might be that a twice daily insulin suits you better, eg one of the isophanes or Levemir. That way you can have separate and different doses morning and evening so you can tailor them to your needs better.

Carbs are great - and eating them makes control easier. That doesn’t mean eating wheelbarrow-fulls, but having reasonable amounts for each meal, just makes things easier. I agree that GF foods aren’t great but you could eat naturally GF free foods like potatoes, sweet potatoes, beans, pulses, squash, quinoa (?), fruit, etc.

I walk a lot and despite my pump, I usually top up with carbs - some beforehand and at intervals during my walks. A mix of quick and slow carbs is good.

Another thought - where are you injecting your Novorapid? If it’s your tummy, try your thigh or bum. It’s absorbed slower there.
 
Also, how far in advance of your meal are you injecting the Novorapid? Getting the timing of your injection right helps a lot. If you can do that, you can often also reduce the amount of insulin you take - which reduces your chance of going low later.
 
Hi Inka, yes normally inject into my stomach. I tried my basal in my leg and every time I tried it I ended up with a day that looked like sharks teeth on the levels. But I can try again. Most of the foods I eat are of the natural variety. I must admit I've never eaten beans , pulses , quinoa etc in my life .....but willing to give it a go. Yes the gluten free stuff like the pasta and bread are interesting.....and then as you know sometimes you get the spike after eating (which freaks me out) and sometimes you don't.
I have a half unit pen coming next week . Could I ask for working out your carb to unit ratio I keep being told by one medic to use 400 as the figure to divide by, and then another says 500. That's quite a difference if you are on low doses of insulin anyway? Which would you use? Thank you.
 
Inka said:
Also, how far in advance of your meal are you injecting the Novorapid? Getting the timing of your injection right helps a lot. If you can do that, you can often also reduce the amount of insulin you take - which reduces your chance of going low later.
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Usually about 20-25 minutes seems to be when I get the best results.....though now I'm not so sure.
 
Tahero said:
Hi Inka, yes normally inject into my stomach. I tried my basal in my leg and every time I tried it I ended up with a day that looked like sharks teeth on the levels. But I can try again. Most of the foods I eat are of the natural variety. I must admit I've never eaten beans , pulses , quinoa etc in my life .....but willing to give it a go. Yes the gluten free stuff like the pasta and bread are interesting.....and then as you know sometimes you get the spike after eating (which freaks me out) and sometimes you don't.
I have a half unit pen coming next week . Could I ask for working out your carb to unit ratio I keep being told by one medic to use 400 as the figure to divide by, and then another says 500. That's quite a difference if you are on low doses of insulin anyway? Which would you use? Thank you.
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I use neither @Tahero My feeling is that if, like me, you’re petite and very sensitive to insulin, then it’s better to work it out by careful experimentation. That is, start with less insulin than you think you need, then cautiously increase it over a period of days. I usually stick to the same meal when checking my ratio as that removes one variable.
 
Tahero said:
Usually about 20-25 minutes seems to be when I get the best results.....though now I'm not so sure.
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That sounds reasonable. The reason why I asked is that sometimes people are inadvertently having too much bolus because they’re trying to reduce the spike, but actually just injecting a little earlier can reduce the spike. As you’re newly diagnosed, I’d not worry too much about spikes and just see where your blood sugar is before your next meal. That allows for your own insulin to act a bit too.
 
Inka said:
I use neither @Tahero My feeling is that if, like me, you’re petite and very sensitive to insulin, then it’s better to work it out by careful experimentation. That is, start with less insulin than you think you need, then cautiously increase it over a period of days. I usually stick to the same meal when checking my ratio as that removes one variable.
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Oh thank you. Yes I will try that . I'll straighten my head out first, and then start again so to speak later today. Thank you
 
Inka said:
That sounds reasonable. The reason why I asked is that sometimes people are inadvertently having too much bolus because they’re trying to reduce the spike, but actually just injecting a little earlier can reduce the spike. As you’re newly diagnosed, I’d not worry too much about spikes and just see where your blood sugar is before your next meal. That allows for your own insulin to act a bit too.
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Oh ok. I thought I wasn't allowed for it to spike so every time it goes up I start panicking and drinking lots of water and moving a lot to try and get it down.
When I wake up in the morning it is usually about 6.1 then when I stand up it goes to 8.2 then back to 5. Something after five minutes. But I wondered if the background insulin kicks in and drags it even lower . I take it in the morning, so if it is already at 5-6 before I take it, and the basal lowers it even more.....it doesn't have very far to fall does it.
I wear a CGM monitor as I get no symptoms when blood levels go low......though I did today but not until it hit 2.6.
 
Spiking is normal 🙂 Even people without diabetes spike. I think you’ve identified your problem: you’re overdoing the control. You need to leave yourself enough glucose to function. Spikes are ok. Leave them be. That should help a lot🙂

You might also want to look into changing your Lantus to the evening or, as I said, getting a twice daily basal.

Finally, not having hypo awareness so early on isn’t good. But, you can sort this 🙂 Relax your ultra-tight control; set your Low alarm higher so you get warning before you go low; and try to stay above 5 at all times. That should restore your awareness.

But - most importantly. Relax that control a little.
 
Plus - whatever 'they' tell us about Lantus dripping in at precisely the same rate for exactly 24 hours 'they' also tell us it reliably lasts - it doesn't do precisely those very things for every single person in the world - for the simple reason that we all have different bodies which although yes we do have lots of similarities - how our body reacts to food eaten, exercise taken and injected insulin and most drugs, just differs. We can all ONLY go by OUR OWN body!

A thing that it does seem to do for most people though - is have a mini peak in its activity between 4 to 5 hours after injecting it.
 
So sometimes in the morning when I wake up my blood sugar is 6.1 ish. Surely by adding the lantus it must push it even further south throughout the day? Like you say about the few hours around lunch time, which was roughly the time I ended up with the figures in their 2's at the railway station. Thank you for your reply @trophywench
 
Tahero said:
So sometimes in the morning when I wake up my blood sugar is 6.1 ish. Surely by adding the lantus it must push it even further south throughout the day? Like you say about the few hours around lunch time, which was roughly the time I ended up with the figures in their 2's at the railway station. Thank you for your reply @trophywench
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No, it should hold your blood sugar steady. Even if you don’t eat, your body will pump out glucose. The Lantus is to control that basically.
 
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