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Dazed and confused

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
D

DancingStar

Active Member
Relationship to Diabetes
Type 3c
Hi,
I was newly diagnosed at the end of December. My Hba1c level was 116. I had a whipple's operation in 2019 so my GP referred me to the diabetes unit at my local hospital. Consultant said he will treat me as a Type 1 and for the last week and half I've been taking 20 units of Lantus in the morning and then carb counting and using NovoRapid 3 times each day.

As my title suggests I'm still in a bit of a dazed and confused state. Because I'd gone 3 years after my whipple without any blood sugar problems I thought maybe I'd "escaped" diabetes so it's been quite a shock to find myself insulin dependent. It seems to occupy all my thoughts at the moment.

Im trying to follow the instructions of my Consultant - working out the amount of carbs I'm going to eat in a meal, calculating the NovoRapid dose and injecting around 10 to 15 mins before i eat. Working out the carbs is quite difficult because we cook so much from scratch so I'm fiddling about trying to calculate how many grams of onions I'm going to eat if I've chopped two small ones etc. It takes away some of the pleasure of eating. I don't know how I'm going to deal with eating out - how will I know how much insulin to take, where do I do the finger prick & injection etc.

I measure my blood glucose 4 x daily and it is generally between 5.5 and 9. I did have a hypo on Sunday when it went down to 3.7 which I was quite surprised about because I had eaten quite a large Sunday lunch and thought I'd undercalculated the amount of insulin I'd need. DSN is putting in a bid for a Libre for me, fingers crossed it's successful.
 
Welcome to the club nobody wants to be in.

It sounds like you're keeping very good control, though perhaps at considerable effort.

Libre shouldn't really be a question: of course you should receive one! And I hope that comes through for you. (If it doesn't, please keep pressing. Especially if you're in England it really shouldn't be a question.)

I think we've had the onions question before, and almost none of us take any account of them. Calculating carbs is (for most of us, most of the time) much more a rough estimation than an attempt to get the exact figure.

So things like beans, potatoes, rice, fruit, flour, get counted but tomatoes, onions, carrots, etc., tend to be ignored. The goal is just to get close enough for the result to be useful.

Similarly for eating out: we just do the best we can.
 
DancingStar said:
where do I do the finger prick & injection etc.
Click to expand...
I missed that bit. When you have a Libre that's easy: just scan at the table. You might feel more self conscious finger pricking or injecting at the table, but again you're best off just doing that: nobody will care. (For injecting, you probably want to wait until you've got the food on the table in front of you.)
 
Hi @DancingStar
I'm also diabetic following pancreatic damage (pancreatitis for me) so officially Type 3c but treated as Type 1.
I've been on insulin from the start (not much pancreas left). It must be tough to become diabetic after 3 years.

It's a huge change with so much to think about. It sounds as though you're managing really well and it is very early days for you.
It's good that they are trying to sort out a Libre for you. It's been a real game changer for me and the alarms are so hopeful in avoiding hypos (most of the time).

I know what you mean about carb counting when cooking from scratch. It sometimes seems easier to use ready packaged food. I don't let it stop me cooking from scratch though. I have a list on the fridge of the carb count of meals I've made. I don't tend to bother too much about counting all veg though, just the higher carb veg, so I don't worry too much about onions. In fact the dietician told me not to count carbs from veg at all.
Do you have Carbs and Cals - app or book? I find it useful for estimating meals out but tend to aim to run a little higher rather than lower when eating out and don't inject until the meal is in front of me.

Do you need to take digestive enzymes (eg Creon) as well due to the pancreatic damage?

Anyway, a big welcome and please ask if you have any questions.
 
DancingStar said:
Hi,
I was newly diagnosed at the end of December. My Hba1c level was 116. I had a whipple's operation in 2019 so my GP referred me to the diabetes unit at my local hospital. Consultant said he will treat me as a Type 1 and for the last week and half I've been taking 20 units of Lantus in the morning and then carb counting and using NovoRapid 3 times each day.

As my title suggests I'm still in a bit of a dazed and confused state. Because I'd gone 3 years after my whipple without any blood sugar problems I thought maybe I'd "escaped" diabetes so it's been quite a shock to find myself insulin dependent. It seems to occupy all my thoughts at the moment.

Im trying to follow the instructions of my Consultant - working out the amount of carbs I'm going to eat in a meal, calculating the NovoRapid dose and injecting around 10 to 15 mins before i eat. Working out the carbs is quite difficult because we cook so much from scratch so I'm fiddling about trying to calculate how many grams of onions I'm going to eat if I've chopped two small ones etc. It takes away some of the pleasure of eating. I don't know how I'm going to deal with eating out - how will I know how much insulin to take, where do I do the finger prick & injection etc.

I measure my blood glucose 4 x daily and it is generally between 5.5 and 9. I did have a hypo on Sunday when it went down to 3.7 which I was quite surprised about because I had eaten quite a large Sunday lunch and thought I'd undercalculated the amount of insulin I'd need. DSN is putting in a bid for a Libre for me, fingers crossed it's successful.
Click to expand...
Hi,
I was diagnosed with Type 1 three weeks ago and, like you, find myself thinking and reading about Diabetes a lot. Confused is how I feel at the moment too. My levels have been up and down (often for reasons I can't fathom) and I am now taking less insulin that I was at the start as, apparently, I am in a 'honeymoon period'! I had a roast dinner last night and later realised I failed to eat enough carbs, as I was low quite soon after. I just did a test and was much lower than I was expecting, at 4.9 - with over an hour until lunch. Turns out I didn't factor in the effect of a bit of hoovering, which I would never have given a second thought to a few weeks ago. I'm off out for my first post-diagnosis meal tomorrow night and am going to do a finger prick test and inject at the table and will eat as wisely as I can, then test later to see how it went. I think there's lots of trial and error and no two days will ever be the same. Good luck.
 
Re cooking from scratch - can I suggest the Nutracheck app? It has the facility to carb/calorie count new recipes - you just add in your ingredients in the quantities for the whole recipe, enter the number of portions and it will calculate the figures for each portion. I've found it invaluable and now have over 70 different recipes stored. You can get a 7-day free trial to see if it suits you
 
I cook from scratch to, and i weight the onions! I have a scales that goes down to 0.1g! (Heston blumental ones- i found the normal ones could be quite inaccurate) You may not wish to follow my example...
I do find, howerever, that you get some meals that you repeat where you know the carb count, and batch cooking helps.
Also, milk in hot drinks has no carbs lol
Seriously, it does become easier, though even a year in it can still be a wee bit confusing
 
Tdm said:
I cook from scratch to, and i weight the onions! I have a scales that goes down to 0.1g!
Click to expand...
Nothing wrong with weighing things (and my (portable) scales also go down to 0.1g). It's just that in terms of what gives a meal carbohydrates, the onions are usually not going to be that significant compared to the mashed potato (or whatever).
 
There are too many other factors which affect BG levels to worry about weighing onions they are not sufficiently high carb to make much difference and because however accurate you think you may be, you don't actually know the exact carb content of the onions you are using, so weighing to 0.1 of a gram is immaterial. To be honest, now that we have Libre (or other CGM) I can't much see the point in weighing anything, although I seldom did before. I just bolus a bit up front and then correct later. It takes all the hard work out of it for me and since I rarely follow a recipe where I would be weighing stuff anyway, it negates the need for scales pretty much at all for me. It must be at least a year since I used mine and it works well for me because my TIR is currently 95% for the past 14 days. Granted it means and extra jab here and there but I find that a lot easier than weighing, measuring and calculating.
Of course, if you haven't got Libre or other CGM yet, then that option isn't available but I still would not be weighing and calculating onions. Your basal insulin will not be keeping you perfectly level throughout the day and night, so a small onion or a few carrots here and there is no big deal. DAFNE which is the "Gold Standard" for educating on insulin usage doesn't count onions or the beans in a chilli although they are generally much more of a problem for me than onions are.
 
Your medicle situation exactly mirrords mine. Congratulations on surviving a 'Whipples' operation. Only 25% of peole survive it. I was diagnose as type 2 straight after the op and after about a year became a type 1. You will find that , in time, you will be able to live a normal life to the extent that sometimes you even forget you are a diabetic.

I sometimes do when I am gardening. Forget to have a biscuit or two and carry on and suddenly feel a hypo coming on and have to take emergency measures/
 
Merryterry said:
My Diabetic nurse tells me that type 3c is not recognised officially in this area
Click to expand...
It would save confusion here on the forum if you show your Type as 3c on your profile here as that can impact the advice or comments people make and Type 3c is definitely recognised here on the forum.
 
Many thanks for all of your replies, you've given me lots of useful advice and tips.

I'm sure my consultant didn't mention Type 3c - he just said that he'd be treating me as a T1. I'll ask him next time I go to the clinic, which is just under 4 months away. I do take Creon with my food.

I have struggled a bit this week - I went out for the day on Tuesday. Thought I was all prepared. Firstly I didn't realise how much a lot of walking would impact my blood glucose level. I felt a bit weird so tested my blood glucose and it was 4 so I think I was just in time to stave off a hypo. Then at lunchtime I ordered my food, calculated my insulin dose, reached in my bag for the pen to inject and it wasn't there - left at home on the kitchen table :(

Then Wednesday night I woke up having a hypo. Managed to measure glucose and it was 2.7. I was shaking so much I dropped the sweets I was about to eat and my hubby had to pick them up for me. I was very scared. The emotional/psychologic effect was as severe as the the physical symptoms I was feeling.

When you have hypos like that how long does it take for you to recover? It was a long time before I felt comfortable/confident enough to get back into bed. I feel very anxious about having a hypo when I'm asleep and not waking up.
 
rebrascora said:
It would save confusion here on the forum if you show your Type as 3c on your profile here as that can impact the advice or comments people make and Type 3c is definitely recognised here on the forum.
Click to expand...
I am sorry but my medical team will not recognise the term 3c and refer to me as type 1
 
Merryterry said:
I am sorry but my medical team will not recognise the term 3c and refer to me as type
Click to expand...
The following from Dancingstar:
I'm sure my consultant didn't mention Type 3c - he just said that he'd be treating me as a T1. I'll ask him next time I go to the clinic,
 
@DancingStar So very sorry to hear you had a nasty nocturnal hypo. I remember how terrifying my first few hypos were and how long it took to recover and as you say the psychological impact of the fear of them. It can really knock your confidence and I would wake several times during the night afterwards to test, just to reassure myself. Oddly, for me, having more hypos cured me of the fear and also of the feeling really shocking and now if I have a hypo through the night I don't even switch on the light I just reach for a couple of jelly babies, chew them and I am back to sleep within a minute which is actually a bit naughty because I should retest after 15 mins to make sure I have recovered. Gradually my body got used to hypos happening and stopped having such an extreme reaction and I also learned to recognise the signs sooner and my body got better at waking me up or perhaps my subconscious learned to wake me up sooner, in the same way as you learn not to roll out of bed and even which side of the bed you are on and where your partner is. It is all just part of the learning process, but I am not in any way understating how scary hypos can be, but you can get confident at dealing with them and the more stable your BG levels become the easier they are to deal with. If you don't have Libre sensors or other CGM at the moment, please push for them on prescription and apply to Abbott Laboratories for a free 14 day trial of Libre in the mean time, as they will give you some reassurance and the element of a safety net.

As regards why your hypos happened.... the impact of exercise can last for 48 hours afterwards and was likely responsible for your nocturnal hypo Wed night. Depending upon which basal insulin you use, it can be helpful to either reduce the dose or reduce your meal time insulin afterwards. It is likely that your missing insulin dose at lunchtime after the walk probably saved you from a massive hypo. At this stage in your journey with insulin usage the best thing to do is probably to make sure your levels are higher than normal at bedtime for a couple of days after exercise. So if you normally aim to go to bed with your levels about 8, then have a biscuit or some peanut butter on toast or cheese and biscuits to push them up to 10 or 12 before you go to bed. You will gradually find what works for you and we are all different in how we respond to exercise and carbs, but it is something that we have to take into consideration with our diabetes. Libre should help you a lot because you can set an alarm to warn you when you are dropping low. I have mine set at 4.2 and that gives me enough time to eat a jelly baby or two to turn it around.

It is also helpful to know that the cells on the inside of your mouth will actually absorb glucose quicker than your stomach so, if you are using sweets like jelly babies or Dextrose tablets, chewing them really thoroughly before you swallow will actually be more effective than just a couple of chews and getting them down your throat.

I hope you are feeling a bit less rattled by your experience now but do speak to your team and push for sensors if you don't yet have anything like that and there is no harm in applying for the free Libre trial if you haven't get done that. If you go to the Freestyle Libre website, you should find details.
 
DancingStar said:
When you have hypos like that how long does it take for you to recover?
Click to expand...
A few hours, minimum. I'll be using a bit less insulin the next day and the next night.

Fortunately, that almost never happens nowadays because of the continuous monitoring. (I have a much better idea of what's happening so it's less likely to happen, and alarms that'll wake me up when something goes wrong so I can head it off.)
 
Takes quite a long time for newer medical terminology to sink in with the medical profession.

Took years to adopt the term 'HbA1c' instead of 'glycosylated haemoglobin' throughout. Hospitals and doctors/nurses STILL call fingerprick blood tests for glucose, 'BM tests'. Both terms are 40plus years out of date.

This forum however isn't out of date with the latest terminology or thinking because diabetes is so personal to all of us members.

Call yourself whatever you like - and indeed continue to be treated as Type 1' but no way Jose does that mean that you actually have Type 1 diabetes.
 
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