Newly diagnosed with very high numbers - confused by symptoms

HSSS

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I seem to be hitting the same issue I did the other week, where the numbers hit a certain threshold then refuse to go down further.

Last night I was 10.1 after a carb-free meal. Excellent I thought, not spiking this is good.

However, this morning I was still at 9.8. And after testing myself again today, after eating absolutely nothing, it went from 9.8 to 9.7 and now 9.6.

Is this right? It almost seems as if my body "wants" to be at this figure and is failing to produce any insulin to get the number down, despite it still being high. I found this previously without metformin where it would stabilise at about 11.5 or so.

Should I inform the doctor about this? Or is this some sort of normal body reaction to being starved of carbs and burning up reserves?

I should point out I am not hungry and do not have cravings. I've had probably a total of 20g of carbs since last Wednesday, plus whatever that (almost totally meat) takeaway had in it on Saturday (which did not spike me either).

This could be a duff glucose meter, although I have my doubts. I've bought another one to be sure, just in case. I did change to a new batch of strips, direct from the manufacturer the other day.
This is normal. Your liver will try and maintain what it is used to and dump glucose to achieve that. After a while it’ll get used to the lower normal and behave better. It’s a series of steps rather than a nice smooth curve down to true normal levels.
 

HSSS

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@jjne what’s the difference between pre and post meals? That’s relevant to if your getting it right. Less than 2mmol rise and it’s just a waiting game. It took longer than a few days to become insulin resistant and diabetic. Probably decades. A little patience would be beneficial to undo the process.
 

jjne

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I'm not entirely sure as I only have a couple of meals I've checked, but the rise was 1.8 (weekend takeaway) and 0.2 (today's salad). That latter one is suspiciously low, although in principle it was well under 5g of carbs based on the numbers I've found online.
 

HSSS

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I'm not entirely sure as I only have a couple of meals I've checked, but the rise was 1.8 (weekend takeaway) and 0.2 (today's salad). That latter one is suspiciously low, although in principle it was well under 5g of carbs based on the numbers I've found online.
Perfectly possible to be the same or lower with a wisely chosen meal. (Don’t take the decimal points too seriously. All meters have an to,earn extra zone and aren’t that perfectly accurate).
 
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jjne

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It certainly does appear that I am experiencing the "dawn spike"... Last night at 11pm (3 hours after meal) 8.0, which pleased me. This morning, 10.2, which didn't. Will see later.
 

HSSS

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It certainly does appear that I am experiencing the "dawn spike"... Last night at 11pm (3 hours after meal) 8.0, which pleased me. This morning, 10.2, which didn't. Will see later.
It’ll get better. It’s usually the last part of the puzzle to fall into place. But it could be months not days. If the rest of the day the rises are less than 2 the pre meal levels should start falling and eventually the morning fasting will too.
 

jjne

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One of the problems with buying the stabby meter yourself is that you don't get someone showing you how it works.

And it turns out that I've burned through over 100 strips, many of them wasted, because I wasn't testing myself properly lol.

For anyone reading this might seem obvious/idiot-mode error, but you have to put the blood on the edge/tip of the strip, and NOT on the top surface of the stupid thing where you see the "pads"! I have been struggling trying to get the meter to register anything, by dumping half a metric tonne of blood (*not much of an exaggeration) on this part of the strip only to find it does nothing, and blaming the system for being rubbish. Not my finest hour - to go through that many strips and not even think to RTFM again is unforgivable really.

In hindsight, I really should have worked this out. It's a non-porous, fibre-glass circuit board -- where is the blood going to go on the top? Moron.

Still, that is fixed now and it's giving me reliable (in the sense that it responds quickly) and consistent results now.

Numbers have crept up slightly though (from 9 to 10 to 11 since Saturday) which is puzzling but I'm going to stick at what I'm doing as they are not going higher than this. If they continue to rise though I will be speaking to doctor as I don't know what else I can be doing that doesn't involve further medication.

Thanks for recent posts HSSS, I am slowly getting my head around all this...
 

jjne

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I have come to the certain conclusion that my meter is suspect. Swapping between strips from two "pots" of them, the numbers differ consistently by 1.5 points. This is not good given that my numbers aren't changing by any more than this generally no matter what I do. They don't spike by any significant amount, they're just flatlined. But given that it is early days I daren't even consume a chocolate bar as an experiment in case it shoots up and fails to come back down.

I've bought a GlucoNavii which seems to be recommended here, which I should have tomorrow. I am also going to ask about GAD testing to be sure about LADA.

I've not consumed any significant amount of carbs now in nearly two weeks. The weight continues to drop. I have cut out every major source of carbs I can think of. I don't think that Dawn syndrome is a significant factor any more. It's just high.
 

ickihun

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I find low carbing can hinder specialist make an informed diagnosis. If they get confused of course we can too.
However you must give your high bgs your priority. Your eye sight and other complications can occur in the body of any type of diabetes.
You're doing brilliantly. Let doctors do their job just as vociferously.
What is the CT scan for?
 
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jjne

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CT scan is to see if there has been damage to the pancreas I believe, due to the high a1c. Pancreatitis or pancreatic cancer. Hopefully just a precaution.
 

jjne

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I think I'm going to give up on any thoughts of believing what these silly little glucose meters have to say for themselves...

Sinocare: Almost exactly 10mmol/l this morning and now.
GlucoNavii: 9.3mmol/l this morning, 11.1 just now, having eaten one avocado in the meantime.

Errr, yeah. A 10% differential in both cases, but no actual pattern.

In other words, it's all nonsense. This idea that you can use these things to reliably tell which foods spike you and which don't is nonsense, at least with the budget meters. A 20% spread overall in readings. Hopeless.
 

HSSS

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I think I'm going to give up on any thoughts of believing what these silly little glucose meters have to say for themselves...

Sinocare: Almost exactly 10mmol/l this morning and now.
GlucoNavii: 9.3mmol/l this morning, 11.1 just now, having eaten one avocado in the meantime.

Errr, yeah. A 10% differential in both cases, but no actual pattern.

In other words, it's all nonsense. This idea that you can use these things to reliably tell which foods spike you and which don't is nonsense, at least with the budget meters. A 20% spread overall in readings. Hopeless.
You’re obviously frustrated right now but take a breath.

Why do you expect to see huge differences when you’re eating next to no carbs? The ideal is nice flat line and you look like you’re achieving this with very low carbs.

What do you think you should be seeing?

They are not perfectly precise. All meters have a margin of error. Both within themselves and each other. People using them to adjust their insulin (which can have life threatening consequences if overdone) manage using these meters.

patterns emerge from a lot of testing. Not a day or two and a handful of meals. So far I’d say you’ve found the meals you are eating do not cause high or prolonged spikes. Worthwhile info. Have you used it after a high carb item at all?

dawn phenomenon if you have it can take months to go away. Overall levels can take a while too if you’ve been high for sometime.
 

Resurgam

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I think I'm going to give up on any thoughts of believing what these silly little glucose meters have to say for themselves...

Sinocare: Almost exactly 10mmol/l this morning and now.
GlucoNavii: 9.3mmol/l this morning, 11.1 just now, having eaten one avocado in the meantime.

Errr, yeah. A 10% differential in both cases, but no actual pattern.

In other words, it's all nonsense. This idea that you can use these things to reliably tell which foods spike you and which don't is nonsense, at least with the budget meters. A 20% spread overall in readings. Hopeless.
I don't have any experience of either of those meter, but what is the difference between testing before the meal and then 2 hours later? That is the key for type twos like me.
As for using the meter - I have never wasted a single strip on any meter I was using - but I have this annoying habit of reading the instructions first - it has saved me a lot of exasperation over the years, though it really ticks off those who think it a waste of time and effort when I flick the switches turn the dials and the result flashes up. I have had to learn not to smile at that point.
 

jjne

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That's not really the point though.

The margin of error on these devices would appear to be in the order of 20%. My state of being, and whether I've RTFM or not, has very little bearing on the basic precision of what is being read. If the conditions are the same then the result should follow the same pattern. The results I am getting simply aren't systematic.

I am forced to conclude that the results I see are +/-10% at the minimum. For one device to state no change and the other to state a huge change means that the noise in the measurements is huge. This type of imprecision is the difference between "normal" and "hypo" when used on someone lower down the scale.

A lot of folks follow these numbers religiously. "This food raises by bg by x points, that food by y points so I'll go with y". But unless the difference is night and day - to the point where you can tell that y is better than x by how much blood drips off it when it's raw - this method is not reliable.

It might as well just flash red/amber/green. False precision is dangerous.

So yeah, the only choice I have here is to eat blandly for three months and hope I don't get another disaster at the end of August.
 
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Antje77

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the other to state a huge change
GlucoNavii: 9.3mmol/l this morning, 11.1 just now
A difference between 9.3 and 11.1 is by no means a huge change, no matter if it's meter accuracy or actual BG change.
A huge change when it comes to blood glucose is going from 5 to 12 or from 10 to 24.
No matter where the real numbers were, they were very likely somewhere between 9.3 and 11.1, considering your other meter read 10 at both times.
Which clearly shows your body deals with an avocado just fine.
 

HSSS

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That's not really the point though.

The margin of error on these devices would appear to be in the order of 20%. My state of being, and whether I've RTFM or not, has very little bearing on the basic precision of what is being read. If the conditions are the same then the result should follow the same pattern. The results I am getting simply aren't systematic.

I am forced to conclude that the results I see are +/-10% at the minimum. For one device to state no change and the other to state a huge change means that the noise in the measurements is huge. This type of imprecision is the difference between "normal" and "hypo" when used on someone lower down the scale.

A lot of folks follow these numbers religiously. "This food raises by bg by x points, that food by y points so I'll go with y". But unless the difference is night and day - to the point where you can tell that y is better than x by how much blood drips off it when it's raw - this method is not reliable.

It might as well just flash red/amber/green. False precision is dangerous.

So yeah, the only choice I have here is to eat blandly for three months and hope I don't get another disaster at the end of August.
Sorry no idea about what rtfm is. And no your state of being doesn’t effect the meter (but the stress might your bgl!) but it does effect how you see the issue. Sorry I meant no offence by my comments.

These meters are not pinpoint accurate. And if you read the manuals with them they explain that. I do agree that some people fail to realise this and as such place too much importance on decimal place changes. Expectations are very relevant. Many meters for home use of varying types and purposes have similar margins of error not just glucometers.

This is where trends come into it. You are looking for significant change (1mmol is not a significant change for the purposes of food testing) on several occasions to rule a food out. Or minimal change on several occasions to declare it safe. And because you are looking at slightly broader numbers the importance of using a single meter is relevant. Some consistory read higher or lower in particular ranges than others. It’s just a fact. Pick one and stick to it. Even if the actual true figure is slightly different by using the same one you will see relative significant changes.

you of course can continue to eat blandly if you prefer. Or you can continue to test with more understanding of how to interpret the results you get.

This is not a race to your next hba1c. (Though for the first couple I years I too saw it that way). What will you do after the next results - good or bad? Race to the next hba1c? It’s a condition you need to manage for life so learning about how to do that might be frustrating right now but it is definitely worthwhile.
 
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Resurgam

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That's not really the point though.

The margin of error on these devices would appear to be in the order of 20%. My state of being, and whether I've RTFM or not, has very little bearing on the basic precision of what is being read. If the conditions are the same then the result should follow the same pattern. The results I am getting simply aren't systematic.

I am forced to conclude that the results I see are +/-10% at the minimum. For one device to state no change and the other to state a huge change means that the noise in the measurements is huge. This type of imprecision is the difference between "normal" and "hypo" when used on someone lower down the scale.

A lot of folks follow these numbers religiously. "This food raises by bg by x points, that food by y points so I'll go with y". But unless the difference is night and day - to the point where you can tell that y is better than x by how much blood drips off it when it's raw - this method is not reliable.

It might as well just flash red/amber/green. False precision is dangerous.

So yeah, the only choice I have here is to eat blandly for three months and hope I don't get another disaster at the end of August.
Eating blandly is not going to help much - you need to sort out your blood glucose levels, but to have got two duff meters seems rather odd - maybe send them back to the manufacturers for checking?
I was able to see that my levels were dropping day by day, first due to avoiding foods which resulted in a spike, and then to sticking to those foods which gave good results.
During that time I had all sorts of dishes, including curries and spiced vege mixes, which I have refined to the diet I eat today. I have a box full of herbs and spices to chose from, there is no reason to have boring or bland foods.
 

jjne

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Thing is, if a result 1.8 higher than a 9.3 is not a huge change, then a result 1.8 lower than a 9.3 isn't a huge change either. Its a bit larger, relatively speaking. 7.5 is a hair's breadth off "normal". It could therefore be said that I'm not far off "normal".

But we all know this is nonsense. I'm sick, and will remain so for a long time to come. It will likely be months before the situation changes, by which time the doc will have me on the stronger medication and any realistic chance of beating this naturally will be lost.