Newly diagnosed with very high numbers - confused by symptoms

HSSS

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I am starting to see some evidence that the dawn phenomenon is starting to weaken (either that or my "set point) is beginning to come down a little). Whereas I used to start around 11.5 and slowly reduce down to around 10 or high 9s, this is now starting to settle into more of a pattern of starting around 10.5 (or less) and slowly reduce to low 9s (with the occasional high 8s). The app is showing quite clearly as well through the graphs that the dawn phenomenon seems to be the only thing keeping the blood sugars high - no spikes through the day, and a quite linear reduction in bgl throughout the day.

The missing piece here is how far does the bg drop overnight, and at what point does it shoot up again. I guess this will be key to how much the hba1c will ultimately come down by.
Can you get a libre (even just one) to see what’s happening with overnight levels? There was a free trial a while ago, not sure if it’s still on or not. It’s about £50 for 2 weeks data otherwise. No prescription required and available via a pharmacy (don’t forget you are entitled to vat free as a diabetic but you might need to check with them they have deducted that).

There’s also a thing called adaptation glucose sparing aka physiological insulin resistance, that shows up as a morning stubbornness in fasting readings and misleading oral glucose tolerance tests. It’s purely a response to low carb and not pathological or harmful. It goes away within a few days of eating carbs should you ever need that test.
 
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LoriF

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Right, tuna salad it is then!

Let's see what happens.

Naive me thought the pancreas would just work if it sensed sugar in blood, at any time of the day.

I also have a scientific background and have struggled...unfortunately its not a linear relationship I am finding and the liver is an infernally efficient organ at releasing massive amounts of glycogen just when you don't want it .....I am relearning everything I thought I knew ...keep at it

Thanks for the reply! I will make sure I eat first thing in future. I had thought that the longer one fasted the better, but clearly that doesn't work, for me anyway.

So it's normal for the pancreas to essentially sit around and not release insulin during the day if a person does not eat? As that seems to be the implication here.
 

Resurgam

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I am given to bouts of exertion - building a greenhouse by myself when the instructions call for two men and a mallet, for instance, or deciding to move the knitting machine station to another part of the house - or servicing 24 knitting machines at the University in a heatwave. Maybe that is a good thing.
It has certainly made for some happy courgettes. They seem to be the variety 'Triffid' - though the leaves do not - yet - turn towards me when I go in with water.
 

lucylocket61

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Found out something today that does rather call into question the validity of some of the numbers I've been measuring - even if the trends are consistent.

The placing of the lance has a quite significant impact on the result. Same meter, results taken seconds apart, clean and dry hands. I was experimenting with positions on the finger to reduce discomfort.

Results from the side of the finger (further down than the base of the nail can be as much as 2.5mmol/l different (lower) to those taken closer to the pad. Even though I've seen it suggested that this is a preferable spot, it also seems to be associated with a higher chance of spurious results (including a 2.8 I got an hour ago which is obviously nonsense). Amount of blood seems the same and I'm not squeezing any harder. Interstitial fluid?

Not drawing any conclusions from this but it is curious. Seems repeatable as well.
Can you provide a link to this idea please? Blood is blood, no matter what part it is taken from with a lancet.
 

lucylocket61

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It's not something I've read, I've observed it while measuring myself.

Unless you were referring to the "interstitial fluid" comment? I have read (can't link to this) that if you squeeze too hard, what comes out is this interstitial fluid (at least initially) and this contains fewer actual red blood cells. This would tally with one of my meters measuring low HCT on the one occasion I used it to measure blood from this area of my finger.
I am not referring to the interstitial fluid thingy.

I notice that using more than one finger on a hand to take a repeat test isnt reliable, so i make sure I use different hands. I assume its due to the healing whatever's rushing to the broken skin on one finger, which travels down the hand.
 

jjne

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I am given to bouts of exertion - building a greenhouse by myself when the instructions call for two men and a mallet, for instance, or deciding to move the knitting machine station to another part of the house - or servicing 24 knitting machines at the University in a heatwave. Maybe that is a good thing.
It has certainly made for some happy courgettes. They seem to be the variety 'Triffid' - though the leaves do not - yet - turn towards me when I go in with water.

Point taken. No further hypotheses will be mentioned, you won't have to suffer the waffling any further.
 
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Resurgam

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Point taken. No further hypotheses will be mentioned, you won't have to suffer the waffling any further.
But but but - I love hypothesising and reading about expected or unexpected happenings - if there are no interesting posts to read on here I might have to go and watch the Sumo highlights....
 

jjne

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I would like to thank everyone on this forum for your help, it is massively appreciated, and I'd like to apologise for twisting about various weird observations along the way.

After fasting for 48 hours, something amazing happened. I'm still experiencing Dawn spikes, and bg levels still fall slowly through the day.

However, these last three nights my blood sugar levels at about midnight, always the lowest time for me, have been falling precipitously. 7.8, 7.6 and tonight 7.1 (all confirmed with a second meter). These are almost non-diabetic numbers, and even the daytime numbers are in the 8s or low 9s now.

I am aware that my numbers tend to rise mid-week and fall at weekends for some reason but these figures really are cause for celebration. If this becomes a pattern I am on course for reversing this thing without requiring strong medication.
 
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HSSS

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I would like to thank everyone on this forum for your help, it is massively appreciated, and I'd like to apologise for twisting about various weird observations along the way.

After fasting for 48 hours, something amazing happened. I'm still experiencing Dawn spikes, and bg levels still fall slowly through the day.

However, these last three nights my blood sugar levels at about midnight, always the lowest time for me, have been falling precipitously. 7.8, 7.6 and tonight 7.1 (all confirmed with a second meter). These are almost non-diabetic numbers, and even the daytime numbers are in the 8s or low 9s now.

I am aware that my numbers tend to rise mid-week and fall at weekends for some reason but these figures really are cause for celebration. If this becomes a pattern I am on course for reversing this thing without requiring strong medication.
Happy to hear you are happy and things continue to slowly improve. It’s fine to discuss ideas and explore your conditions and your understanding, no need to apologise. If no one ever had new ideas or asked about them we’d learn little in life.

Is there something mid week that varies in that or the build up eg exercise or stress maybe? A cheat day that takes a while to get over (probably not for you but it is another potential cause for others reading this later with similar issues).
 

jjne

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The only real difference between weekend and weekday is work, so I suppose stress (more frustration at present!) could be a contributing factor.

Sadly the initial euphoria didn't last as my sugars are back on the upward slope again, although I do seem to be back down to the 7s each night - so I'm assuming that is the new "set point" but whatever mechanism is pushing glucose back in (and I'm not entirely sure it is dawn spike any more as I stayed up very late the other day and the levels spiked back up *before* I retired for the night - it seems like some kind of rebound / reaction to the level lowering) is continuing to do so.

No, no cheat days :) The nearest I get is the occasional block of cheese mid-afternoon when I'm supposed to be OMAD. I know, shoot me...

As an aside I think I need a new set of bathroom scales. Mine are cheating I think - they show a value to 100g of precision but step measurements in blocks of 700g! Cruddy cheap Amazon junk lol. So I appear to remain precisely the same for a few days then go down a kilo and a bit. Aye right.
 
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HSSS

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The only real difference between weekend and weekday is work, so I suppose stress (more frustration at present!) could be a contributing factor.

Sadly the initial euphoria didn't last as my sugars are back on the upward slope again, although I do seem to be back down to the 7s each night - so I'm assuming that is the new "set point" but whatever mechanism is pushing glucose back in (and I'm not entirely sure it is dawn spike any more as I stayed up very late the other day and the levels spiked back up *before* I retired for the night - it seems like some kind of rebound / reaction to the level lowering) is continuing to do so.

No, no cheat days :) The nearest I get is the occasional block of cheese mid-afternoon when I'm supposed to be OMAD. I know, shoot me...

As an aside I think I need a new set of bathroom scales. Mine are cheating I think - they show a value to 100g of precision but step measurements in blocks of 700g! Cruddy cheap Amazon junk lol. So I appear to remain precisely the same for a few days then go down a kilo and a bit. Aye right.
“Dawn” phenomenon can happen at anytime of the day. It’s usually in response to not being fed for a while and a keen liver sensing lowering levels and wanting to be helpful and bump you back up. So yes relevant to the set point more than the sun. Dawn is simply when it most commonly occurs.

Hey, at least the scales are going down even if jerkily.
 
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jjne

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Had another of those little "episodes" that I now know are almost certainly false hypos last night, although I now know not to worry about them.

Went to bed early, in the middle of the night had a nightmare where I couldn't breathe properly, work up in a cold sweat with nausea, heart racing, got up and had a drink, blood glucose down in the high 5s/low 6s (measured a few times).

Within an hour, felt fine, measured again in the low 9s... my system is fighting this change in circumstances all the way! Back in its "normal" morning routine low 8s now.

You will not win...
 

Dandelade

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Had another of those little "episodes" that I now know are almost certainly false hypos last night, although I now know not to worry about them.

Went to bed early, in the middle of the night had a nightmare where I couldn't breathe properly, work up in a cold sweat with nausea, heart racing, got up and had a drink, blood glucose down in the high 5s/low 6s (measured a few times).

Within an hour, felt fine, measured again in the low 9s... my system is fighting this change in circumstances all the way! Back in its "normal" morning routine low 8s now.

You will not win...
I had the same thing with false hypos and my body just got used to the new lower level. It still happens when I get in the 4’s - when this happens if I don’t do anything I get a rise presumably from liver dump, but if it eat a really small snack it seems to trick my liver into not dumping. Just a handful of nuts or small portion of cheese does the trick for me.

Mind you, I’m very new too and no idea if this is the right thing to do or if it would help you, but it’s worked for me!
 
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jjne

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That's a very good idea actually, next time this happens I will grab a block of cheese or make myself an omelette or something, thanks!
 

HSSS

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I had the same thing with false hypos and my body just got used to the new lower level. It still happens when I get in the 4’s - when this happens if I don’t do anything I get a rise presumably from liver dump, but if it eat a really small snack it seems to trick my liver into not dumping. Just a handful of nuts or small portion of cheese does the trick for me.

Mind you, I’m very new too and no idea if this is the right thing to do or if it would help you, but it’s worked for me!
I do similar in the morning to halt the dawn phenomenon without causing a new rise. Anything small and non carby. Hard boiled egg works well as a grab and run.
 
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jjne

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An update - my numbers are really starting to come down now - seeing more and more 7s, one-third are at that level over the last couple of weeks and over the last few days make up the majority of readings, so I believe this is actually "pre-diabetic" level now (although this will in part be the result of a still-high metformin dose). Only the odd 6 so far but hopefully that will be the next step.

So yeah those who said this would come down in steps was spot on.
 

Resurgam

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An update - my numbers are really starting to come down now - seeing more and more 7s, one-third are at that level over the last couple of weeks and over the last few days make up the majority of readings, so I believe this is actually "pre-diabetic" level now (although this will in part be the result of a still-high metformin dose). Only the odd 6 so far but hopefully that will be the next step.

So yeah those who said this would come down in steps was spot on.
That is good to read - once I was seeing numbers in the 7's things really began to get better. I think there is some significance to not breaking 8 at 2 hours after eating.
 
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SuNuman

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That is good to read - once I was seeing numbers in the 7's things really began to get better. I think there is some significance to not breaking 8 at 2 hours after eating.
I agree!! Dance round the room. Lol.
 

EllieM

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An update - my numbers are really starting to come down now - seeing more and more 7s, one-third are at that level over the last couple of weeks and over the last few days make up the majority of readings, so I believe this is actually "pre-diabetic" level now (although this will in part be the result of a still-high metformin dose). Only the odd 6 so far but hopefully that will be the next step.

So yeah those who said this would come down in steps was spot on.

That's awesome, I remember how discouraged you were when your levels seemed stuck at a much higher point. Did you ever get your cpeptide back, by the way?