Lows and lows

[Pandy8]

Just seeking a bit of reassurance for my relatively newly diagnosed T1 husband.
What can you eat to bring up BG which doesn't pile on the pounds? He is so fed up with having to eat in the middle of the night or at random times of day. He has put on about 10kg in two months and sees no end to the ballooning. BG seems to swing wildly and randomly, and he is very fed up when (as he sees it) he doesn’t ‘get it right’. Do you just have to eat less of the things you do want (meals?) to account for the things you have to have but don’t want (jelly babies and oat cakes in the night) ?
Also, is there any way of managing without alarms in the middle of the night? Unfortunately lack of sleep isn’t helping his overall coping skills.
What suggestions do people have other than jelly babies and oatcakes? What is quick acting but not sugary? He doesn't ever choose sweet things normally so this aspect is difficult but he can’t think of other ways round it. My suggestions are obviously not helpful.
Many thanks.

 

[Sally71]

Glucose tablets, full sugar Coca Cola, Lift glucose drinks are alternative choices. However, if your husband is having lots of hypos it would suggest that his insulin dose is too high and needs to be adjusted. Can you get in touch with his medical team and ask for advice? If he’s quite newly diagnosed they might still be trying to get the dose right, and he might be in the “honeymoon period” which means his pancreas is still trying to produce some insulin sometimes which then adds to what he has injected. Even when you’ve been diagnosed for years things still change from time to time and you have to make adjustments. What insulins is your husband on?

 

[Bruce Stephens]

What is quick acting but not sugary?

Nothing, really. Sugary is part of it. If it's a flavour thing, you can get various sour sweets that have much the same effect.

BG seems to swing wildly and randomly, and he is very fed up when (as he sees it) he doesn’t ‘get it right’.

He needs to get the basal level right, and (most likely) aim first at reducing the lows. Once you've had a low it's really easy to go high half an hour or so afterwards and then you're going up and down annoyingly. So address the lows first, then try to smooth things out.

And if the main problem with highs is just after meals, try taking the insulin a bit earlier (so more significantly before eating). A bit of a risk when you're eating at a cafe or restaurant (you don't want to inject if you're not sure when the food will arrive) but practical when you're at home.

Ultimately there's no quick fix. It just takes practice.

 

[Pandy8]

He’s on Novorapid and Lantus.I have suggested he contacts the team but they seem to think he’s doing ok as his overall averages are good. The alarms in the night seem to be equally for highs as lows.

 

[Bruce Stephens]

He’s on Novorapid and Lantus.I have suggested he contacts the team but they seem to think he’s doing ok as his overall averages are good. The alarms in the night seem to be equally for highs as lows.

Their apparently lack of interest might just be that they think he's doing OK for now. (And later they'll hopefully offer training and worry more about the details.)

Even so, it's worth trying to reduce the lows. They're the main short term risk, and are the things that feel worst when they happen.

 

[trophywench]

It's a bit like juggling running water to begin with - so don't ever think you're the only person things like this happen to, cos we all recognise what this is like both physically and mentally. But - that's like the chicken and the egg; which came first? You can't really sort the mental thing out except by sorting the physical side first - and I have to say for me, the mental side usually sorts itself out without any other help when I sort out the physical side.

More questions though!

How newly diagnosed is he
Can you give timings please - what times of day does he eat, when does he take his Lantus, how is he calculating how much Novorapid to have with his meals - or is that fixed doses
When does he test his BG and does he use his meter as well as scanning his Libre
When do the highs and lows happen in comparison to the last mealtime
How have you and he been told to learn about diabetes - what books or websites have been recommended
You aren't him and sorry, I know you want to help him, but you can't have the slightest idea of how hypos or highs make you feel - plenty of blokes on here as well as women, who do - and empathise!

 

[Inka]

He’s on Novorapid and Lantus.I have suggested he contacts the team but they seem to think he’s doing ok as his overall averages are good. The alarms in the night seem to be equally for highs as lows.

Has he explained to them that although his average is good, it’s composed of lots of highs and lows? I’m sure a chat with them would be helpful.

A few points: blood sugar can be more erratic in the honeymoon period after diagnosis because the body’s still making a little bit of insulin of its own randomly and erratically. That will gradually reduce. Putting on extra weight is normal - I put on weight and got back to my usual weight, then put on a few pounds more. My DSN said this was over-compensation because the body had been literally starving prior to diagnosis. My weight stabilised over some months.

Importantly, is your husband carb-counting and adjusting his mealtime insulin? If not, he’ll be fighting a losing battle to get things right. Please do explain a little more so we can offer suggestions.

The best- and crucial - things to treat hypos are glucose and sugary things. So regular Coke, Glucojuice, Dextro tablets, etc, followed up by longer-lasting carbs like a digestive or two, slice of bread, etc.

@Pandy8 Type 1 is hard and it’s difficult to get a balance but I’m sure your husband can reduce his hypos and improve things (and get more sleep!). If you can tell us a bit more then you’ll get more tailored suggestions.

 

[everydayupsanddowns]

Ah @Pandy8 This is really rotten for you both

But lovely to have you here, trying to pick up some shared experiences, suggestions, and possible strategies from our friendly forum community, and in turn to support your husband.

This sort of frustration is absolutely not unusual, and neither is the feeling of pressure to ‘get it right’. Being kind to yourself, staying attentive to the bigger picture while allowing, and accepting the occasional daily wobbles to pass can be a lifelong project in itself.

Looking after your mental health, is a really important aspect of your diabetes management toolkit.

Two books that are frequently recommended by type 1s on the forum are

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - ignore the title, this book is suitable to people of all ages!

Think Like a Pancreas by Gary Scheiner - A practical guide to managing diabetes with insulin

These are both very well regarded, are great sources of reference, and practical management ideas.

On a completely different level, a while ago we had a thread where members here, with a variety of different types of diabetes, thought about what tips they would give themselves early on in their years with diabetes.

5 Top Tips for Better Diabetesing

Just found myself absently wondering what I would say to myself if I could go back in time ‘Bill and Ted’ style and offer newly-diagnosed-me some hints and tips for better diabetes management, and a better relationship with my diabetes from future-me. What 5 hints and tips I might offer myself...

forum.diabetes.org.uk

Diabetes can be very frustrating to live with, and can involve a seemingly endless round of experimentation, adjustment, trial-and-error, improvement, success… then change… then back to experimentation… and so on. But all of that effort is not wasted. It is learning and relearning, giving yourself more ideas, options and strategies to try to solve the problems quicker each time.

Keep going! And keep asking questions. Ideally, perhaps encourage your husband to join himself? There’s nothing quite like receiving suggestions, encouragement and ideas from people facing the same daily frustrations.

 

[Pandy8]

Thank you all for your kind replies. Yes, joining this forum would help, I’m sure, but it’s probably unlikely.

Since diagnosis in late November he has tried to educate himself from Diabetes UK info, JDRF, books, a T1 friend and by carefully recording his own readings, carb intake, insulins given and exercise levels. As a scientist with a healthy disrespect for chat rooms he had a reasonable base-line level of knowledge of diabetes as our son was insulin dependent for a while, but obviously is aware that everyone is different. The local DSNs have access to his stats from Libre 2 and are impressed with his numbers, but whilst it is good to have a pat on the back this hides a great deal of angst and frustration.

He is carb counting, giving the occasional adjustment dose whilst being aware of stacking, and thinking through his activities and exercise rate. Late afternoons he typically runs low so he has been trying to compensate for that. As that is the only time he can go to the gym this can take some management and he feels that any exercise he takes is negated by extra calorie intake. The alarms overnight can be high or low. He has tried splitting doses taken with a high fat content meal to account for highs later on. Often a high is at bedtime, followed by a low in the night, but it could be the other way round. I have tried to encourage him to chill a bit more about it all as I’m sure the stress of it all is the most detrimental thing.

The last couple of weeks have been particularly volatile and a period of non-diabetes related worry. Adrenaline undoubtedly doesn’t help. Just looking forward to some stability and a night without oatcake crumbs in the bed.

 

[trophywench]

So what does he reckon is likely to be responsible for the exercise hypos - too much basal at that time of day or too much bolus for lunch?

 

[Pandy8]

He has tried adjusting the basal down but found he was running high. He’s going to try again though. He has lunch around 1pm and is often low by 4-5pm. Suspect his high energy life in term time requires a completely different regime to holiday time so adjustments made this week will have a different effect to those made last week.

 

[trophywench]

Does he actually have half-unit pens? They still don't give utterly fab control of insulin but clearly, much better than only being able to adjust dosage by whole units. If not, anyway, he can ask his team for them.

Just thought - what basal insulin does he use - cos some of em any changes take 3 full days to properly see if that helped.

 

[Pandy8]

That‘s a good idea. No, he doesn’t have any half unit pens though he has mentioned trying to get them as sometimes he thinks a half unit might work best. He’s using Lantus for basal.

 

[trophywench]

Oh well with Lantus, you do have to wait 3 days to see if what you did had the desired effect. So - it's probably not the best basal insulin for him either. He might do an awful lot better on Levemir, even though that is usually best delivered in 2 doses a day - not usually of the same amount nor at 12 hour intervals.

In truth he'd be far better off with a pump anyway but the chances of him getting one this soon after diagnosis are probably low if not impossible. As an adult you do need to have - and be able to demonstrate to the decision makers - a high competence in dose adjustment for carbs, problem solving etc before they usually volunteer to invest that ongoing amount of NHS money on you.

 

[Pandy8]

My son was on Levemir so we are a little familiar with it. In the meantime it’s good to know the effect of a change in Lantus dose won’t be immediate, thank you.

Well pumps are probably way down the line. But if they are good for mountaineers I expect he’ll join the queue.

 

[Proud to be erratic]

He has tried adjusting the basal down but found he was running high. He’s going to try again though. He has lunch around 1pm and is often low by 4-5pm. Suspect his high energy life in term time requires a completely different regime to holiday time so adjustments made this week will have a different effect to those made last week.

Hello @Pandy8 , I'm T3c following a total panc'y in Feb 20 so my experience is limited; and having no pancreas introduces some different problems. But my insulin regime is broadly as for T1.

Thanks to Libre 2 and other tech I'm getting much better at preventing hypos, however still get very erratic responses - some of which were making no sense to me.

Then I very recently found a mention of the phrase "Insulin on Board (IOB)" and after reading a bit about this I realised it might explain some of the BG behaviour that I experience. In summary I understand that the more insulin you have inside you the more susceptible you can be to hypos arising from increased activity; it seems that active muscles use the potential excess insulin to extract glucose from your blood stream for muscle metabolism and storing excess glucose, drawing down your BG much more rapidly than if you were sedentary for the 4-5 hrs of the bolus duration. This for me would explain why if I'm very active shortly after having my breakfast, yet having reduced my bolus for that meal by as much as 75%, I crash towards hypo spectacularly quickly - despite having eaten a substantial breakfast. If I wait 4+ hrs before getting active, then the crash doesn't even start.

Might be worth looking into this Phenomenon and trying adjusting bolus doses according to how active your husband anticipates he is going to be after a meal. I appreciate one doesn't always know when you need to be active; but if one understands what could be happening then it's a bit easier to plan for that (eg recognise that unplanned activity is happening and take a modest snack as a precaution while still mid range) rather than react after becoming hypo.

Incidentally I have half-unit pens and believe they have been a real help with my BG control.

 

[Pandy8]

Goodness, @proudtobeerratic you have been through the mill. It sounds as if you are getting your head round the BG issues. Thank you for your reply, this is all useful info to add to the store.