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keeps dropping into hypo and cant raise sugars

8 replies

NettleTea · 13/09/2021 08:09

my daughter has cystic fibrosis diabetes - its almost like a cross between type 1 and type 2 in that depending on the rest of her health, the pancreas can or cannot release insulin (well it can produce it, along with digestive enzymes, but the tubes could be partially or wholly blocked which stops it getting where it should be)

as a result she wears a Libra monitor and with high carb meals she takes between 1-2 units of a novorapide pen.

She is also on digestive enzymes with food, which are mainly calculated around fat content, but also contain amylase, which helps digest carbs. but previously had been told that she didnt need to take them if she had sweets etc, but that was pre diabetes, so may be having some impact here

She has recently started hhaving hypos and struggled to get her sugars back up. The numbers are not as crucial as with straight diabetes - for example the CF nurses told her that a 3 isnt as much concern as if she were type 1 diabetes as its a different thing altogether

so some questions

does stress and anxiety have a big impact on blood sugars? She has left to do a course yesterday and had been exceedingly anxious about it - really panic attack type anxiety - she has PDA/ASD so does get very very anxious. she is on Sertraline but had forgotten to take them for a day or two, but did take them yesterday eventiually. She managed to get to the town where her course is going to be and has her boyfriend staying with me, she had been exhausted the night before and slept in, only eating a noodly soup around 2pm. at 5.30 she had to get off the train as was having the first hypo with blood sugars at 2.7. and found something to help raise it It then settled and they continued their journey and stopped for food around 8ish. they arrived at their hotel at 9.30 and ate at the hotel. but she hadnt needed any insulin she says. I dont know how much she ate.

then around midnight it dropped around 2.9 and despite having had 1.5 litres of lucozade over the next 2.5 hours it fluctuated between 2.9 and 4, going up and down. Around 2.30am I suggested she take some digestive enzymes and I dont know if that was what finally let it start going up. But she was never told that she needed to take creon with lucozade if her sugars were low. They returned to 4.9 before she went to sleep.

is this normal, for the figures to fluctuate like this, or for it to take hours to go back up. she has only had the diabetes for 2 years and the clinics have not been up and running since then

OP posts:
PinkFootstool · 13/09/2021 12:10

You really need specialist advice on this one - if you can't see an NHS service, consider a private dietician (not a nutritionist) who specialises in this area? I've used City Dieticians for my own (not complex!) needs - perhaps one place to start to get some guidance?

Ozanj · 13/09/2021 12:20

While CFRD is similar to both Type 1 and Type 2, it’s treatment is similar to Type 1. In that the goal isn’t necessarily to restrict calories like it is with Type 2. She HAS to eat her usual high calorie diet so I imagine her not taking care of herself in that respect has left her getting hypos.

NettleTea · 13/09/2021 20:12

@Ozanj

While CFRD is similar to both Type 1 and Type 2, it’s treatment is similar to Type 1. In that the goal isn’t necessarily to restrict calories like it is with Type 2. She HAS to eat her usual high calorie diet so I imagine her not taking care of herself in that respect has left her getting hypos.
yes I think this is at the bottom of this. she seems to have developed an eating problem and doesnt seem to be eating much at all. Im very worried about her to be honest
OP posts:
Fantail · 13/09/2021 20:25

I’m T1, stress definitely affects my blood sugar levels - but usually makes me go high, not low.

Sadly, eating disorders are reasonably common in people (mostly girls) with T1. You definitely need to access some specialist advice on this one.

NettleTea · 14/09/2021 12:19

Today she seems much better. She only had one small hypo yesterday, although her levels were low most of the day.

She has taken on board the fact that she needs to be getting a whole lot more food into herself, and that a regular routine, and eating spread through the day, with snacks, is going to make her feel alot better. It would seem that the Kaftrio, which is the CF new super medicine, has most likely reduced her diabetes, as she had been needing less digestive enzymes, but because of her impaired GI absorbtion and the rubbish habit of staying in bed to very late, feeling too sick to eat, and then not and going back to sleep, it has meant that although her pancrease is semi functioning and trying to maintain a level when sugars are put in, those levels are plateauing out at too low a level, so she needs to gradually raise the base level up by prolonged and constant food input

OP posts:
Indiana2021 · 15/09/2021 23:22

You might find this quite useful OP.

keeps dropping into hypo and cant raise sugars
NettleTea · 16/09/2021 10:03

thanks for that post.

getting into a routine with her course, getting up and eating breakfast, and enjoying what she is doing all seems to be helping and her levels have returned to the normal range. She has met up with a friend who is practicing all his cooking as wants to open a delivery van after Uni, so thats helped getting the calories in too!

OP posts:
mintyneb · 20/09/2021 08:29

I have a 14 Yr DD with CF and CFRD. She has 3 units of insulin every morning and then 1 or 2 finger prick tests during the day to check levels.

She's had a few hypos, usually in the 3s but one of about 2.7, and each time they're because she's not eaten enough or there's been too big a gap since her last meal. Never usually on purpose though fortunately.
I can't answer about the slow response to raise her numbers im afraid but would definitely agree that keeping on top of her calorie intake is key

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