Diabetic after total pancreatectomy/splenectomy 1 month ago

[Pam*]

I had a Neuroendocrine Pancreatic Tumour removed at Kings hospital 4 weeks ago. This resulted in me having a total pancreatectomy/splenectomy (removal of pancreas, spleen, gall bladder, duodenum, bile duct was moved and portal vein resection)
I am now diabetic and finding it hard to stop my blood glucose going up and down like a roller coaster. I had the Freestyle Libre 2 fitted 4 days ago. I know it's early days and I have a lot to learn. My appetite is not yet back to normal. I am not yet counting carbs. I am also not very active yet.
Yesterday my BG was particularly worrying going from 3 - 20 - 2.9 - 15 - 9.1 I will try & add a photo of my graph.
Can anyone suggest where I may have gone wrong? Anyone else been on the same journey?

 

[Deleted member 527103]

Please don’t think of your diabetes management as “wrong”. As you say, it is early days, your body is under stress after dealing with major surgery and you haven’t been taught how to use the tools you have been given.
It is likely that your insulin doses are not correct. This is normal as it takes trial and error to sort them out.
Carb counting will help but, in the meantime, I recommend asking how many carbs your insulin dose is based on.

The other thing to consider is that Libre is calibrated to be most accurate between about 4 and 9 mmol/l.
Outside of this range, it can over estimate highs and under estimate lows so it is recommended to check with finger pricks when high or low.

 

[Pam*]

Please don’t think of your diabetes management as “wrong”. As you say, it is early days, your body is under stress after dealing with major surgery and you haven’t been taught how to use the tools you have been given.
It is likely that your insulin doses are not correct. This is normal as it takes trial and error to sort them out.
Carb counting will help but, in the meantime, I recommend asking how many carbs your insulin dose is based on.

The other thing to consider is that Libre is calibrated to be most accurate between about 4 and 9 mmol/l.
Outside of this range, it can over estimate highs and under estimate lows so it is recommended to check with finger pricks when high or low.

Thank you for your advice.
I am on 4 NovaRapid at breakfast, 3 at lunch and 2 at dinner (unless my blood glucose is high then I add 1 if over 10 and add 2 if over 15). This seems odd as I eat a small breakfast, small lunch and main meal at dinner time in the evening. As far as I know 1 insulin units = 10 gr carbs. I also have a slow acting insulin in the morning of Degludec 16 units. Only been on this 2 days.

 

[JAT1]

You will be able to control your blood sugar levels much more when you can carb count and take the amount of rapid-acting insulin you need corresponding to what you will eat. Some meals have more carbs than others and if you are taking fixed doses it's easy to get off track. At least that's how it was for me. I didn't have any control until I stopped with the fixed doses for my Novorapid and started carb counting. Good luck, learn as much as you can and it will all fall into place.

 

[EllieM]

Welcome to the forums @Pam*

You've unfortunately been thrown in at the deep end, as most T1s (who don't produce insulin but still have an otherwise working pancreas) have a bit of residual insulin production left when first diagnosed, and so have a bit of help from their body when first starting out.

An issue is that people's insulin needs vary wildly, and so your team will be starting you on a low dose so as to avoid severe hypos. Also, though traditional T1s don't produce insulin, they do produce glucagon when their blood sugar goes low, and this signals the liver to pump out stored sugar to reduce the severity of the hypo. So you don't have that little bit of help from your pancreas to smooth things out at the bg low end.

You're also still presumably recovering from the op, and stress and illness do weird things to blood sugars, so I am not surprised yours are all over the place. The phrase "this is a marathon not a sprint" gets thrown around a lot to new diabetics, and I will add it too.

Are you getting hypo symptoms when your blood sugar goes down to 3? After 52 years of T1 I still (luckily only sometimes) get graphs like that, it's easy to overcorrect a hypo and then shoot up. You should find it much easier once your team have helped you work out how much insulin you actually need (which will take time.)

It's really good that your team have you on a libre.

Sending you virtual hugs from New Zealand.

 

[Japes]

Thank you for your advice.
I am on 4 NovaRapid at breakfast, 3 at lunch and 2 at dinner (unless my blood glucose is high then I add 1 if over 10 and add 2 if over 15). This seems odd as I eat a small breakfast, small lunch and main meal at dinner time in the evening. As far as I know 1 insulin units = 10 gr carbs. I also have a slow acting insulin in the morning of Degludec 16 units. Only been on this 2 days.

Welcome to the forums and the best place I've found for reassurance and support. Sorry about all the reasons, though, and I hope recovery continues well.

It takes quite a while for things to settle as your team works out what you need. 1 unit to 10 grams of carbs is a common starting point and may well change. I have a similarly "odd" pattern as I need more insulin in the mornings than the evenings and it's always been that way. It took me quite a while to get used to that. (I mean, 5 units for some plain yogurt in the morning which only needs 2 units for the same amount in the evenings. It's silly, but there it is...)

I am on different insulin ratios for each meal, and depending on the amount of activity as well! Slobbing on the sofa days need more than 15 miles of walking days.

 

[Pam*]

Welcome to the forums and the best place I've found for reassurance and support. Sorry about all the reasons, though, and I hope recovery continues well.

It takes quite a while for things to settle as your team works out what you need. 1 unit to 10 grams of carbs is a common starting point and may well change. I have a similarly "odd" pattern as I need more insulin in the mornings than the evenings and it's always been that way. It took me quite a while to get used to that. (I mean, 5 units for some plain yogurt in the morning which only needs 2 units for the same amount in the evenings. It's silly, but there it is...)

I am on different insulin ratios for each meal, and depending on the amount of activity as well! Slobbing on the sofa days need more than 15 miles of walking days.

You are on different insulin ratios for different meals? Wow that sounds complicated. How on earth do you work it all out? Same food at breakfast needs a different amount of insulin at dinner time?
I have started to work out my carbs but am not using the information yet to alter the insulin. Lots to learn still!

 

[Pam*]

You will be able to control your blood sugar levels much more when you can carb count and take the amount of rapid-acting insulin you need corresponding to what you will eat. Some meals have more carbs than others and if you are taking fixed doses it's easy to get off track. At least that's how it was for me. I didn't have any control until I stopped with the fixed doses for my Novorapid and started carb counting. Good luck, learn as much as you can and it will all fall into place.

I dont have the DAFNE course in my area but there is one called SADIE. I hope to muster up enough energy to start that soon to learn all about carb counting. I will then contact my diabetic team to ask when I can start altering my insulin acording to the carbs being eaten.
The worst time for me now is at night. My alarm went off 3 times last night due to low blood glucose.

 

[Antje77]

You are on different insulin ratios for different meals? Wow that sounds complicated. How on earth do you work it all out? Same food at breakfast needs a different amount of insulin at dinner time?

In a nutshell, test before breakfast, count carbs, inject recommended dose, test again some 2 and 4 hours after breakfast and see what happened. Make notes of carbs and BG before and after.
End up way too high? Too little insulin for that amount of carbs at breakfast.
End up too low? Too much insulin for that meal at that time.

Other meals, same routine.

There are more factors influencing BG, so don't draw conclusions if you're doing something much different drom your usual routine. For instance, if you usually do computer work in the hours following breakfast but on one day you go for a two hour bike ride after breakfast, the effect will be very different!

 

[Japes]

You are on different insulin ratios for different meals? Wow that sounds complicated. How on earth do you work it all out? Same food at breakfast needs a different amount of insulin at dinner time?
I have started to work out my carbs but am not using the information yet to alter the insulin. Lots to learn still!

@Antje77 summed it up well! Thank you.

It's second nature now, to be being different things at different times of day to be fair, but took a lot of working on initially.

 

[Pam*]

In a nutshell, test before breakfast, count carbs, inject recommended dose, test again some 2 and 4 hours after breakfast and see what happened. Make notes of carbs and BG before and after.
End up way too high? Too little insulin for that amount of carbs at breakfast.
End up too low? Too much insulin for that meal at that time.

Other meals, same routine.

There are more factors influencing BG, so don't draw conclusions if you're doing something much different drom your usual routine. For instance, if you usually do computer work in the hours following breakfast but on one day you go for a two hour bike ride after breakfast, the effect will be very different!

Thank you so much for explaining. I think its all begining to make much more sense