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It is impossible to carb count!

E

ExtremelyW0rried

Well-Known Member
Messages
333
Type of diabetes
Type 1
Because eating the same thing at the same time of day gives me wildly different results! What am I meant to do with this?!

Always had very good control until I had my daughter nearly two years ago. I breast fed for 20 months which swung my sugars round a little and now a month after stopping it's not any better.

For instance I can wake up at 5mmol. Have half a unit of insulin. Eat a piece of toast. An hour later be 6mmol. Two hours later be heading towards a hypo.
Next day I can wake up at 5mmol. Have half a unit of insulin. Eat a piece of toast. An hour later be 15mmol.

I only take 18u in an entire day so I'm on quite small amounts of insulin. I daren't take more than half a unit because some days I'm low after two hours. It is really really frustrating. Then I go for my appointment and they are all 'what's your carb ratio' how the hell am I meant to know with results like the above?! Some days I'm low and some days I'm high and some days it works out ok. How am I meant to know what the great higher force of type 1 diabetes is going to decide to do?!

I actually strongly think I still make insulin - 24 years after diagnosis. For example last week I went out for lunch, was only 3.8mmol beforehand so didn't bolus right off. Then had 0.2u. An hour later I was 8mmol and two hours later I was 4.1mmol. I had about 50g of carb in that meal.
Another day that amount of carb might push me into the teens.

I'm finding it very very very difficult to manage right now.

Has anyone got any advice? How can I manage a condition that varies so drastically at the moment? To be honest I'm doing it instinctively a lot of the time but I know they won't like that answer at clinic.
 
Hi there @ExtremelyW0rried
with your post above I would be thinking you would be a good candidate for a pump.

on low doses of insulin and varying results from doing the same things each day -- you are clearly working hard to try and stand still.

have a word with your DSN !!

also tagging some other pumpers for some support.

@Snapsy , @claire1991 , @Juicyj , @noblehead ,
 
hey @ExtremelyW0rried
If you are already on a pump are you making your own adjustments to basal rates ?

have you done any basal rate testing ? link here https://mysugr.com/basal-rate-testing/

we are all different and it sounds like you are struggling at the moment -- have you made any adjustments for the cooling of temperatures in the last couple of weeks ??
do you have any / a lot of stress in work currently ??

both of these can cause issues !!

all the best !
 
@ExtremelyW0rried - First let me say, I'm not T1, so can't comment with any personal experience on your insulin regime.

You're obviously testing regularly, but in my experience of blood glucose monitoring, whilst that gives a picture of what's going on, it's usually not a full picture. A finger prick test is just a snapshot in time.

Have you ever tried using a Libre flash glucose regime, or even had a trial of it from your clinic? Such a gizmo could literally fill in the blanks, in terms of your peaks, troughs and any trends, as it traces your levels 24/7 forr the duration of each sensor. That might help you make sense of what's going on, or if not that, at least additional data that your DSN/Consultant might be able to help with.

The sorts of uncertainty you're working with can't be helpful to you at all. Good luck with it all.
 
ExtremelyW0rried said:
Because eating the same thing at the same time of day gives me wildly different results! What am I meant to do with this?!

Always had very good control until I had my daughter nearly two years ago. I breast fed for 20 months which swung my sugars round a little and now a month after stopping it's not any better.

For instance I can wake up at 5mmol. Have half a unit of insulin. Eat a piece of toast. An hour later be 6mmol. Two hours later be heading towards a hypo.
Next day I can wake up at 5mmol. Have half a unit of insulin. Eat a piece of toast. An hour later be 15mmol.

I only take 18u in an entire day so I'm on quite small amounts of insulin. I daren't take more than half a unit because some days I'm low after two hours. It is really really frustrating. Then I go for my appointment and they are all 'what's your carb ratio' how the hell am I meant to know with results like the above?! Some days I'm low and some days I'm high and some days it works out ok. How am I meant to know what the great higher force of type 1 diabetes is going to decide to do?!

I actually strongly think I still make insulin - 24 years after diagnosis. For example last week I went out for lunch, was only 3.8mmol beforehand so didn't bolus right off. Then had 0.2u. An hour later I was 8mmol and two hours later I was 4.1mmol. I had about 50g of carb in that meal.
Another day that amount of carb might push me into the teens.

I'm finding it very very very difficult to manage right now.

Has anyone got any advice? How can I manage a condition that varies so drastically at the moment? To be honest I'm doing it instinctively a lot of the time but I know they won't like that answer at clinic.
Click to expand...

I am not a Type 1 diabetic, so I have nothing personal to offer you. I did however come across this blog which you might find interesting reading. Basically the T1 poster found it a lot easier to both control his blood sugar and count the carbs by not eating many carbs - ie following a similar diet to that which many of the T2 people here use.
https://diatribe.org/low-carb-vs-high-carb-my-surprising-24-day-diabetes-diet-battle
 
Have you ha a cpeptide test to see if you are producing insulin?

I think I remember you mentioning your dad is also type 1? Have you, and he, been tested for MODY? Which is a genetic diabetes which can be managed very similarly to type 1 but can also throw its own demands in to the mix.
 
I self fund a libre and some days my sugars are all in blue - between 4 and 8.5 - and other days they are like a mountain range.
Generally my days and what I eat are all very much the same so it is very difficult to know why some days are so good and others are mountain ranges.
I find it hard to give correction doses as again some days 0.3u will drop me over 10mmol and other days do nothing. I feel I have to go in gently as I can't risk giving a full unit and then a bad hypo.

My dad is type 1. He was diagnosed aged 28 and didn't take insulin for over five years. They initially told him he was type 2 even though he was slim and very active at the time and relatively young for a type 2 diagnosis. Sometimes they now say type 1 and sometimes type 2. Before him there is no history of type 1 or 2 in the family.
However he now takes a lot of insulin. Over 150u a day and he doesn't eat a lot. He is obviously insulin resistant and with MODY don't insulin doses remain low?
We've never had any testing and I've never had a c peptide test. No one has ever mentioned it to me. Generally I just turn up at clinic for ten minutes every 8 months or so and then that's it for another 8 months!
 
ExtremelyW0rried said:
I self fund a libre and some days my sugars are all in blue - between 4 and 8.5 - and other days they are like a mountain range.
Generally my days and what I eat are all very much the same so it is very difficult to know why some days are so good and others are mountain ranges.
I find it hard to give correction doses as again some days 0.3u will drop me over 10mmol and other days do nothing. I feel I have to go in gently as I can't risk giving a full unit and then a bad hypo.

My dad is type 1. He was diagnosed aged 28 and didn't take insulin for over five years. They initially told him he was type 2 even though he was slim and very active at the time and relatively young for a type 2 diagnosis. Sometimes they now say type 1 and sometimes type 2. Before him there is no history of type 1 or 2 in the family.
However he now takes a lot of insulin. Over 150u a day and he doesn't eat a lot. He is obviously insulin resistant and with MODY don't insulin doses remain low?
We've never had any testing and I've never had a c peptide test. No one has ever mentioned it to me. Generally I just turn up at clinic for ten minutes every 8 months or so and then that's it for another 8 months!
Click to expand...

Maybe show your dad that article and if he is not eating much make sure its the most nutrient dense foods possible !
 
His blood sugars seem to prevent him from eating a lot.
He doesn't all out low carb but I bet he only has 50-60g a day which isn't that much considering his insulin dose.
 
ExtremelyW0rried said:
I self fund a libre and some days my sugars are all in blue - between 4 and 8.5 - and other days they are like a mountain range.
Generally my days and what I eat are all very much the same so it is very difficult to know why some days are so good and others are mountain ranges.
I find it hard to give correction doses as again some days 0.3u will drop me over 10mmol and other days do nothing. I feel I have to go in gently as I can't risk giving a full unit and then a bad hypo.

My dad is type 1. He was diagnosed aged 28 and didn't take insulin for over five years. They initially told him he was type 2 even though he was slim and very active at the time and relatively young for a type 2 diagnosis. Sometimes they now say type 1 and sometimes type 2. Before him there is no history of type 1 or 2 in the family.
However he now takes a lot of insulin. Over 150u a day and he doesn't eat a lot. He is obviously insulin resistant and with MODY don't insulin doses remain low?
We've never had any testing and I've never had a c peptide test. No one has ever mentioned it to me. Generally I just turn up at clinic for ten minutes every 8 months or so and then that's it for another 8 months!
Click to expand...

Sounds like it might be worth having a look into a MODY diagnosis if both you and your dad have type 1 which is difficult to manage with his insulin resistance and your seemingly variable I:c ratios, if neither of you have a definitive antibody positive diagnosis and you may have some endogenous insulin production.

Have you or your dad had antibody testing? Only a positive antibody test give a definitive type 1 diagnosis, if his care team sometimes say he's type 1 and other times type 2 it sounds like either he hadn't received antibody testing or its negative. A cpeptide test to see if you are producing insulin shouldn't be that difficult to get done by your DSN or your GP.

http://www.modyawareness.com/healthcare-professionals/what-is-mody.php
 
No he's never had any antibody testing. They don't seem too fussed about it really, I don't think anyone has ever suggested it to him. I've certainly never had any but I suppose I was always going to be diagnosed as type 1 as I was only 11 at diagnosis.
MODY is strongly genetic isn't it?
 
ExtremelyW0rried said:
No he's never had any antibody testing. They don't seem too fussed about it really, I don't think anyone has ever suggested it to him. I've certainly never had any but I suppose I was always going to be diagnosed as type 1 as I was only 11 at diagnosis.
MODY is strongly genetic isn't it?
Click to expand...

Yes, mody is caused by a gene mutation.

This article has some interesting info on further tests to rule out a MODY diagnosis, and how 90% of MODY cases are initially misdiagnosed as type 1 - http://www.thejournalofdiabetesnursing.co.uk/media/content/_master/528/files/pdf/jdn12-1pg14-18.pdf

Genetic testing for MODY is run by Royal Devon & Exeter hospital, so it might be worth getting in touch with them to see if they would do genetic testing on you/your dad.
 
Hmmm. Interesting.
My dad doesn't present as type 1 or 2 - could be LADA?
I guess I am more typical in type 1 presentation, I just don't seem to need that much insulin and also the fact that sometimes my blood sugar levels suddenly drop or I require no insulin when eating makes me think I must still be making some insulin occasionally. Although I think that can happen in type 1 anyway.
Surely if I can sometimes eat up to 50g of carbs without any insulin at all (basal is always there I suppose) I must be making some insulin of my own at least some of the time. It's so difficult though because it makes it like a really long extended unpredictable honeymoon phase!

How would I contact them? Email? I literally have no idea how to go about this sort of thing. I have a consultant appointment next month so I could ask then but it is a fill in consultant as the permanent one left last year and hasn't been replaced so now I'm never sure who I will see.
 
ExtremelyW0rried said:
Hmmm. Interesting.
My dad doesn't present as type 1 or 2 - could be LADA?
I guess I am more typical in type 1 presentation, I just don't seem to need that much insulin and also the fact that sometimes my blood sugar levels suddenly drop or I require no insulin when eating makes me think I must still be making some insulin occasionally. Although I think that can happen in type 1 anyway.
Surely if I can sometimes eat up to 50g of carbs without any insulin at all (basal is always there I suppose) I must be making some insulin of my own at least some of the time. It's so difficult though because it makes it like a really long extended unpredictable honeymoon phase!

How would I contact them? Email? I literally have no idea how to go about this sort of thing. I have a consultant appointment next month so I could ask then but it is a fill in consultant as the permanent one left last year and hasn't been replaced so now I'm never sure who I will see.
Click to expand...

Try Prof Ellard, conact details at the contact us page of diabetesgenes.org, - http://www.diabetesgenes.org/content/contact-us

They might have no interest in gene testing until you have cpeptide and antibody tests. But it might be worth enquiring, if you can present the story of your and your fathers diabetes. Of course you could wait to see if your consultant will run the tests when you see him next month - certainly being able to eat 50g unbolused for carbs does suggest a cpeptide test would be wise, unless you are on a bucket load of insulin, or currently breast feeding, or your not needing so much insulin days correlate to a particular point in your menstrual cycle, or exercise or stress, or illness.

Most type 1s honeymoon and there will be residual insulin production for a while after diagnosis, but probably not 23 years after diagnosis.
 
I know Royal Devon & Exeter hospital were at one point helping people with travel costs for MODY testing, I don't know if they still do. My mother has it, and it's quite probably various other family members have it. They tested me even though I'm type 1 hoping to find someone with both types of diabetes, unfortunately for them I didn't inherit it.
 
My basals are pretty low too - less than a unit an hour and several hours at nothing in the night.

I am more sensitive to insulin at some points of the month than others. I had a set failure a few weeks back. My blood sugar was 18mmol. I had 0.5u and an hour later my blood sugar was 5mmol and falling rapidly which you wouldn't even think possible.
 
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