Could anyone offer any advice if possible please?

[Spiker]

Hi @Maxy

It is definitely very frustrating, the advice we get at times. Unfortunately you are an individual and you don't quite fit the 'standard' pattern of treatment in a number of way - athletic, active, low carb. I can only commiserate.
At least on this forum you will get some diverse opinions. We don't all agree but we try to respect each other's diversity. You can pick and choose the ideas that forum members present here and decide if some of them might work for you. Which is frankly more freedom than you will get at a typical clinic appointment. Alas.

 

[Maxy]

Hi @Maxy

It is definitely very frustrating, the advice we get at times. Unfortunately you are an individual and you don't quite fit the 'standard' pattern of treatment in a number of way - athletic, active, low carb. I can only commiserate.
At least on this forum you will get some diverse opinions. We don't all agree but we try to respect each other's diversity. You can pick and choose the ideas that forum members present here and decide if some of them might work for you. Which is frankly more freedom than you will get at a typical clinic appointment. Alas.

Wise words, knowledge is power- knowing all different opinions gives as much scope to try all options available.

By the way just wanted to add, I was referring to the different opinions of nurses and doctors rather than what I've heard from forum members. Everything I've heard here has been in much more detail and more beneficial- gives opportunity for honest realistic debate, rather than the clinical "what I say goes" environment.

 

[Maxy]

Update: To summarise, did 6 day blind CGM- there is little that I could draw from this, difficult to establish patterns.
Still feel terrible in general and all over the place. Results reflect this:

My nurse has changed my basal from 28 units in the morning and 4 at night, to 30 units in the morning and 2 at night.

Still at the same stalemate.. more evening basal I go hypo, too much morning basal I hypo continuously.
Eating protein and fat seems to get turned straight into glucose.
Exercise makes for frequent hypos for 3-4 days straight, I've had to stop.

Not to beat around the bush; life sucks at the moment.

However, to be optimistic this ^ paints an interesting picture of what's going on and alerts the Nurses/Doctors attention, who say "We can't let you live like this."

Can people please analyse this and see if they can draw much from it?

From this experience I have learnt that:

• My BG frequently goes over 23 mmol/L (can only guess how far off the chart)
• HbA1c is now discredited. I feel like there's an emerging realisation without CGM diabetes is walking through an assault course backwards with a blindfold on.
  
  Another analogy I'd draw is that standard BG testing is like wandering through a dark cave with nothing to guide me but a small match- I'm walking through the cave hopelessly not knowing what's going on; trying CGM is like suddenly having the cave fill with flood lights.. I can see the all the pitfalls and dangers. It suddenly goes out and I'm back to ye old match. Now I know that there are sudden drops, sharp rocks, crevasses and vampire bats everywhere... but I no longer know where I'm going, I'm more scared than I was before and have a headache from info overload. I also really want a flood light.
  
  
• Ramble over, I really want CGM- more than I've wanted any piece of technology/gadget in my life.. more than the original gameboy colour when I was a kid.

 

[Maxy]

For reference, Day Summaries:

I'll see if I can find my food/monitoring diaries to accompany this.

 

[Juicyj]

Hey Maxy, wow I had a CGM a month ago and in comparison mine was flat lining..

This was picked up before but my personal thought is one of 2 things, change your basal injection site, start injecting into your bum, it's fat or at least probably the fatest area of your body, should absorb at a slower rate, try this for a week, if this doesn't show any signs of working then ask to change your insulin to Tribeca, you take this once a day and has a flat profile, no spikes.

Out of interest what was your days like on Thursday and Friday as these appear to be your most stable days ?

 

[tim2000s]

Morning @Maxy , without seeing the food and insulin diaries that accompany these graphs it is quite hard to draw conclusions. What we do see is that you spike heavily with food and there looks to be a lot of yo-yoing going on, which has been discussed before. I'm guessing you take glucose to treat the lows and then find yourself very high afterwards.

The thing that I really notice are the following two points (and you can see it in the other overnight graphs):

These all show a significant falling in your bg level overnight, ie it looks like a drop of around 5mmol/l over the faasting period. This would typically suggest that your basal level is too high, and that there is constant downward pressure on your bg levels that you are trying to manage around.

The following graphs also show some interesting items which do seem to be repeated:

The red circle highlights a hypo and treatment. You see this in other points on your graph, and when you treat hypos, you seem to hugely overtreat them. Now this particular spike also looks like a bit of a CGM error as it jumps massively then drops off again within two hours, but the spikes you see post hypo suggest that when you treat them you are probably using too much glucose and you are getting a side effect glucagon release as well, pushing the BG levels up higher.

The blue circles highlight your reaction to food. Your spikes last around two hours, which is what you would expect. They are not of unexpected duration, but what is different is the timing. The insulin I assume you are taking with it is taking about an hour to kick in. I suspect that there are two issues here. One is your insulin carb ratio and the other is your timing. Both probably need some level of consideration.

The other Item that I noticed was a number of late night food items recorded with no insulin. Those seem to have resulted in a higher bg level post eating in the majority of cases.

I strongly recommend that you do a number of basal tests. Once that is correct it is much easier to reassess your insulin carb ratio and review your timing. This isn't going to be a quick fix, but only once you've done this can you start to look at using Metformin to reduce insulin resistance. I'm not a clinician, but your food and insulin data doesn't look (just from the graphs) like insulin resistance is taking place.

Hope that helps.

 

[Maxy]

Thanks for your quick replies- I'll add my diaries below, had to just screenshot them as I couldn't export them properly:

I hope this is visible and doesn't need a magnifying glass to see it.

 

[Maxy]

Hey Maxy, wow I had a CGM a month ago and in comparison mine was flat lining..

This was picked up before but my personal thought is one of 2 things, change your basal injection site, start injecting into your bum, it's fat or at least probably the fatest area of your body, should absorb at a slower rate, try this for a week, if this doesn't show any signs of working then ask to change your insulin to Tribeca, you take this once a day and has a flat profile, no spikes.

Out of interest what was your days like on Thursday and Friday as these appear to be your most stable days ?

Thanks for your reply Juicy. You're very right for suspecting injection site problems.
This was the first thing that was suspected and checked. I can't inject into my stomach because of previous lipohypertrophy, the same with my bum. I was injecting into my arms before but was warned that it was dodgy territory. Which leave only my legs- I struggle as my legs feels lumpy (I've had 2 injection site checks recently and they've ruled out that the sites are mostly fine.
I inject into the legs with a 4mm needle just below the skin, and find it difficult to not hit the muscle.

Morning @Maxy , without seeing the food and insulin diaries that accompany these graphs it is quite hard to draw conclusions. What we do see is that you spike heavily with food and there looks to be a lot of yo-yoing going on, which has been discussed before. I'm guessing you take glucose to treat the lows and then find yourself very high afterwards.

The thing that I really notice are the following two points (and you can see it in the other overnight graphs):

These all show a significant falling in your bg level overnight, ie it looks like a drop of around 5mmol/l over the faasting period. This would typically suggest that your basal level is too high, and that there is constant downward pressure on your bg levels that you are trying to manage around.

The following graphs also show some interesting items which do seem to be repeated:


The red circle highlights a hypo and treatment. You see this in other points on your graph, and when you treat hypos, you seem to hugely overtreat them. Now this particular spike also looks like a bit of a CGM error as it jumps massively then drops off again within two hours, but the spikes you see post hypo suggest that when you treat them you are probably using too much glucose and you are getting a side effect glucagon release as well, pushing the BG levels up higher.

The blue circles highlight your reaction to food. Your spikes last around two hours, which is what you would expect. They are not of unexpected duration, but what is different is the timing. The insulin I assume you are taking with it is taking about an hour to kick in. I suspect that there are two issues here. One is your insulin carb ratio and the other is your timing. Both probably need some level of consideration.

The other Item that I noticed was a number of late night food items recorded with no insulin. Those seem to have resulted in a higher bg level post eating in the majority of cases.

I strongly recommend that you do a number of basal tests. Once that is correct it is much easier to reassess your insulin carb ratio and review your timing. This isn't going to be a quick fix, but only once you've done this can you start to look at using Metformin to reduce insulin resistance. I'm not a clinician, but your food and insulin data doesn't look (just from the graphs) like insulin resistance is taking place.

Hope that helps.

You're right about the overtreating hypos. During that six days most the hypos happened during sleep so I woke up in a cold sweat in 'panic' mode- definitely over treated. Problem is I'm finding that I'm going hypo in the early hours of the morning even if my levels are fine before sleep- I was only doing virtually no evening basal and this was still happening. A couple of instances I've also experienced hypo systems before I go bed, rolling/growling stomach, adrenaline, wakefulness- which is incredibly frustrating when I have to be somewhere in the morning.

 

[tim2000s]

But looking at your graphs, your basal looks to be the cause. Whenever we see the fasting period, there is a constant suppression and decline of you bg going on. I think you need less basal.

 

[Maxy]

In the morning or the evening? Just to clarify:

During 6 day blind CGM I was doing 28 units basal in the morning and 4 units at night (0 when I've been exercising).

Now I'm doing 30 units basal in the morning and 2 units at night (0 when I've been exercising).

Bolus remains at a ratio of 1 unit to 6 carbs.

 

[Maxy]

What if it were the case that I'd do better with more basal, but a respectively lower bolus, as the high bolus doses cause a much more frequent spike- which could result in fewer ups and downs?

 

[tim2000s]

What if it were the case that I'd do better with more basal, but a respectively lower bolus, as the high bolus doses cause a much more frequent spike- which could result in fewer ups and downs?

If you look at the fasting periods, which I highlighted in my earlier post, you see that your bg level is dropping 5mmol/l over a 6 hour period. If your basal level was correct, it would be dropping no more than 1.7 mmol/l over this period. It's not that you need more basal, it's that you need less in total. What I'm suggesting is that maybe 32u of basal is actually too high a load.

In terms of timing, until you basal test your morning load, you won't know how much too much you are taking. I suggest you start there and then look at what needs to change. The issue with having an incorrect basal is that it throws everything else out, so you need to take the time to get it right. Once this is right, then you can look at the bolus amount and the insulin carb ratio. It will become very obvious whether this is right once your basal is correct.

You are also not applying consistent insulin:carb ratios - you have some which are 1u:6g, some that are 1u:2g, some where you aren't bothering to use insulin at all, in spite of having a high BG and eating 25g of carbs. It's all a little unclear as to why you are doing what you are doing.

 

[Maxy]

If you look at the fasting periods, which I highlighted in my earlier post, you see that your bg level is dropping 5mmol/l over a 6 hour period. If your basal level was correct, it would be dropping no more than 1.7 mmol/l over this period. It's not that you need more basal, it's that you need less in total. What I'm suggesting is that maybe 32u of basal is actually too high a load.

In terms of timing, until you basal test your morning load, you won't know how much too much you are taking. I suggest you start there and then look at what needs to change. The issue with having an incorrect basal is that it throws everything else out, so you need to take the time to get it right. Once this is right, then you can look at the bolus amount and the insulin carb ratio. It will become very obvious whether this is right once your basal is correct.

You are also not applying consistent insulin:carb ratios - you have some which are 1u:6g, some that are 1u:2g, some where you aren't bothering to use insulin at all, in spite of having a high BG and eating 25g of carbs. It's all a little unclear as to why you are doing what you are doing.

I've done 2 separate basal tests under medical supervision, feel like I'm going round in circles a little.

I have been only correcting with meals doing the correction doses with meals that the Aviva Expert calculates which is why it appears I'm doing varying insulin:carb ratios- forgot to mention since then my correction factor has been altered.

 

[tim2000s]

I'm intrigued that the basal tests under medical supervision didn't notice that you weren't getting a flat basal profile. It's a little disturbing. Can you post the numbers you saw for either of those, and were they conducted fasted or with some form of food on board? If you had food on board what was it?

 

[Maxy]

I'm intrigued that the basal tests under medical supervision didn't notice that you weren't getting a flat basal profile. It's a little disturbing. Can you post the numbers you saw for either of those, and were they conducted fasted or with some form of food on board? If you had food on board what was it?

I'll see if I can find em mate, they were conducted with small fat/protein meals with non fibrous veg- namely spinach/beans/brocolli. On one or two occasions I had to jump ship due to treating hypo. I'll try and find the results.

 

[tim2000s]

I'll see if I can find em mate, they were conducted with small fat/protein meals with non fibrous veg- namely spinach/beans/brocolli. On one or two occasions I had to jump ship due to treating hypo. I'll try and find the results.

Hmmm. Any protein or beans would, in my view, screw up a basal test. Others on here would agree with that I think.

 

[Maxy]

I'm intrigued that the basal tests under medical supervision didn't notice that you weren't getting a flat basal profile. It's a little disturbing.

I know I've felt confused for a while now- I keep doing what they tell me and I seem to be getting worse, sometimes better, then worse again. They thought they had the right basal after the first test.

 

[Maxy]

Hmmm. Any protein or beans would, in my view, screw up a basal test. Others on here would agree with that I think.

I'm inclined to agree with you 100%. The nurses and nutritionist have been under the opinion that they don't affect blood sugar much, but I think this is entirely text-book. My blood sugar spikes hugely after protein/fat, especially if I haven't eaten carbs for a few hours- I've been trying to consume a tiny amount of carbohydrate with meals consisting of mainly protein/carbs so that the body doesn't switch to using fat as a fuel source.

If I remember right, the second basal test was completely fasting- but I struggling from being really hungry and ate a can of tuna. Bear with me, I'll find the results

 

[Maxy]

I still haven't been given any advice by them on how to bolus for protein and fat- been told to 'figure out how to bolus properly for carbs before we start worrying about protein/fats' - I can understand what they're trying to say, as theoretically figuring out rules for protein/fat bolusing would be of secondary importance as they shouldn't be too much of an influencing factor.

I think quite a few of those spikes on the CGM graph is where I have eaten no carbohydrate meals, felt it was unnecessary to bolus and not written anything down.

 

[tim2000s]

I think quite a few of those spikes on the CGM graph is where I have eaten no carbohydrate meals, felt it was unnecessary to bolus and not written anything down.

That would make sense, and the cgm is showing that really you need to. I notice that when you've eaten carbs and protein, you've bolused (normally) only for the carbs. I think you probably need to include the protein as well.

It would certainly be worth sharing your fasted basal test with us so that we can let you know what it shows in our experience.

As an FYI, using cgm, when I was basal testing, my fasted value was a flat number for eight hours, and I see the same overnight. That's why I am slightly surprised at yours.