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[Jomar]

I wonder if anyone can help. I have had chronic pancreatitis for 30 painful years. I take creon with food, and have been diagnosed as having endocrine and exocrine insufficiency. Earlier this year my hba1c was 42. HOWEVER… my bs readings are regularly over 10. But that isn’t what actually causes me problems, I can’t feel the highs. But I get low bs regularly ( I am no on any diabetic medication at all). On Monday, I was going on holiday, 2 hours from where I live, when I got there, felt awful, sweaty, confused but worse than usual, my heart was racing I had black spots in my vision felt like I was going to pass out. Took my bs it was 1.8. Finally got straight after eating more then I usually do in a week and have been v careful since. But I can’t help but feel the hba1c doesn’t represent the exhausting swings between high and low I am getting and my GP just thinks I should “eat more”! Any ideas/help v gratefully received

 

[Rokaab]

The HbA1c is just an average (a 3-month average at that) so I'm guessing your lows and highs are in effect cancelling each out in the HbA1c.

If you can and haven't already you could get a free 2-week trial of the libre and see what is happening and see if that helps show whats going on and if it is showing wild swings show that to your doc/consultant

 

[Jomar]

That was what I thought. And although I can’t feel the highs, I am assuming they still do damage. As I only have 1 kidney that works I am keen to avoid that. However my GP seems very laid back about the whole deal but that low on Monday scared the s*** out of me!

 

[Jomar]

Although they did refer me onto the avoiding diabetes course. Which is run by a sports graduate, who has no clue about anything medical and just reads out the accompanying book! It’s quite worry really. They weigh us every session! I like to go up and get weighed to see how much I have lost that week and how underweight I actually am. It really is a load of …….

 

[Jomar]

And this evening, my bs has gone from 17.5 to 3.7 in an hour!

 

[Lamont D]

I wonder if anyone can help. I have had chronic pancreatitis for 30 painful years. I take creon with food, and have been diagnosed as having endocrine and exocrine insufficiency. Earlier this year my hba1c was 42. HOWEVER… my bs readings are regularly over 10. But that isn’t what actually causes me problems, I can’t feel the highs. But I get low bs regularly ( I am no on any diabetic medication at all). On Monday, I was going on holiday, 2 hours from where I live, when I got there, felt awful, sweaty, confused but worse than usual, my heart was racing I had black spots in my vision felt like I was going to pass out. Took my bs it was 1.8. Finally got straight after eating more then I usually do in a week and have been v careful since. But I can’t help but feel the hba1c doesn’t represent the exhausting swings between high and low I am getting and my GP just thinks I should “eat more”! Any ideas/help v gratefully received

I assume you have a specialist to go and see, or get in touch if needed.
This rollercoaster ride of BG levels, is down to your pancreas overproduction of insulin but this has a delayed effect. So until the insulin kicks in your BG levels will spike. This is very similar to me. But for me it's the carbs.
I have no idea why pancreatitis does this. Wether reducing your carb intake will make a difference.

I'm sure because of your other conditions will likely impact this. But for me keeping steady stable BG levels is the best way to control symptoms.

A cgm is a good way to track your bg levels.

If you do go low, having too much food, may produce something called the rebound effect. This is what happens, when your BG goes low, you have too much, you spike high, too high, lots of high and low symptoms, then your pancreas kicks out insulin, then sugar crash. You take too much again, and so on.
With most people, the liver would protect the low with glucogenisis, but like me, the amount of insulin is still too much. And you get the low.
You need to find out why you are going high and low!

Keep safe.

 

[Jomar]

Thank you . It’s just exhausting but it also feels like no one gets it, so so glad there are people here who understand x

 

[Lamont D]

When I was diagnosed after a long battle to understand my body.
There wasn't much information out there. There was only the usual advice which in all honesty didn't make sense. So I had to research, read, test, experience, experiment, put it all together and find a balance of food that would not give me the symptoms or make me ill!
A lot of So called healthy food that had been recommended to me for years, was not healthy for me.

So the more I got into it, the more that the logic of not being on that rollercoaster ride began to improve my health.

Included in that health improvement, every aspect of my brain functions, my organs, my ability, ability and demeanour also improved.

Keep safe.

 

[Jomar]

When I was diagnosed after a long battle to understand my body.
There wasn't much information out there. There was only the usual advice which in all honesty didn't make sense. So I had to research, read, test, experience, experiment, put it all together and find a balance of food that would not give me the symptoms or make me ill!
A lot of So called healthy food that had been recommended to me for years, was not healthy for me.

So the more I got into it, the more that the logic of not being on that rollercoaster ride began to improve my health.

Included in that health improvement, every aspect of my brain functions, my organs, my ability, ability and demeanour also improved.

Keep safe.

Actually, I have read your posts with interest, because for many years I have been aware that anything particularly high in sugar that I ate came with the pay off that a few hours later I would feel shaky, hungry etc all the typical low bg symptoms. It’s only fairly recently that I seem to also have high bg to add to the party! So I would be really interested to hear about your journey to diagnosis and how you control it now. In the past for me, it was simple, don’t eat that marsbar! But things are quite confusing at present…

 

[Lamont D]

Confusion in what to eat has more or less been part of the treatment for nearly 25years now, it is not the word I would use. It is more likely ill informed or following the text book T1 diabetes, one treatment fits all or for the pharmaceuticals industry to encourage meds.

My dietary treatment from the first few appointments, was the NHS eat well plate. I was told to eat 'healthy food' ' porridge, baked spuds the usual carb filled diet. Even eating less and less, I was putting on weight.

Was (mis) diagnosed with T2 (2009) still dietary treatment, no different, keep eating 'healthy food'!
Finally ended up eighteen stone, doctors in surgery couldn't understand. Had terrible symptoms. Always good that T2s should be ok on this diet.
I think I was lucky that one GP, never guessed or because of the finger prick test (having a hypo) didn't think that it didn't make sense and give me meds. Even took me off metformin!
I got a referral. Found it was a rare non diabetic condition - RH.

The thing is, most of the symptoms of low BG levels are akin to sugar crashes. Same as T2. The symptoms from spikes the same, it is I go hypo, whereas a T2 won't!

The hypos are caused by too much insulin levels basically. I won't go through the science bit.

Again, basically, I found out through testing, experiment, experience, which foods to avoid. It is as simple as that! Any foods that causes spikes are forbidden. Because of the trigger for the excess insulin response is caused by carbs and sugars.
So because I avoid carbs (as much as possible) I don't get the spikes of BG levels, which controls the insulin, so no hypos!
No carbs, no spikes, no hypos = control.
And the more my BG levels are continually in normal BG levels, is best for my health. And no symptoms!

Just be careful about the carbs you eat, discover those baddies! And yes stay away from them mars bars!

Keep asking, knowledge is key to understanding T2!
High spikes will do you no good!

 

[jonathan183]

Keep a log of what you eat and when you have symptoms - you may find some foods cause much bigger problems than others. You may find avoiding some foods lets you manage the condition and reduces the symptoms.