In need of help 70 hypos a week

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Yellow Zebra

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My 12 year old daughter was diagnosed with T1 12 weeks ago.
Relentless nightime hypos and desperate for some help (or hope).

She’s no longer taking a basal insulin to try to stop these hypos and fast insulin is a really low ratio (1:30)

It’s 3am and the hypos began at 7pm and still not getting reading above 4 for any length of time. This is the pattern every night.

We’re doing what we’ve been advised by our diabetic team (hypo treatment, wait 15 mins then long carb etc) but she rarely stays up beyond 4 and now 12 weeks of this is exhausting.

Is there any help out there as this is exhausting?
 
Welcome @Yellow Zebra That sounds awful for you both. How low does she go, and are you verifying the lows with a fingerprick? Which bolus/fast/meal insulin does she take and when does she eat her evening meal? And what time does she have her lunch?

This could just be the honeymoon period but have they ruled out coeliac disease and other medical conditions that can cause hypos? You say her ratio is 1:30. Often people have different ratios for breakfast, lunch and evening meal. Have you tried changing her evening meal ratio? Have you tried giving her a lowish amount of carbs for her evening meal and not bolusing at all? Have you tried giving her a very low carb meal in the evening ie only negligible carbs from green veg, and no bolus?
 
Welcome @Yellow Zebra You must both be exhausted with all the night time hypos.

Yes this will settle down and become very manageable, but in the early stages there is so much to learn and it takes time to find out what works for each person.

@Inka has listed all the suggestions I can think of, which could address the fact that she has more insulin than she needs. Do contact her team today and tell them what is happening. It does sound like this is the honeymoon period and it is likely that her pancreas is still producing some insulin.

Have they checked your carb counting with you. This seems like a lot to do to start with, alongside everything else that you are getting used to, but it does become part of a new normal for all of us.

Keep questions coming and let us know how you progress.
 
@Inka and @SB2015 thank you for your responses and encouragement.

We have tried all the suggestions you make and hence the message of desperation as we have run out of options to try to make this manageable. Coeliac was ruled out early on.

I really am struggling to find others who have been on this journey and can tell me this pattern gets better as it feels horrendous.
 
It WILL GET BETTER. The early stages are very difficult but it does get easier.

As your daughter is having hypos she has too much insulin on board. Keep doing what her team have advised, and contact them again today. Tell them what is happening. You should have emergency contact details and they will want to help you get things adjusted.

We are all different and it takes time to sort out our individual needs. I know that this seems unlikely but things will settle.
 
Another thought is that it might be worth asking about alternative insulins.
Which ones is she using at present
 
@Yellow Zebra it will get easier, this is a horrible blip but soon it will work out and she will have a normal busy life

Does seem like too much insulin. As others have advised speak to her team asap and they should be able to help.

It is not normal at all to have hypos this much she must feel rotten.

Hope you get it sorted soon. Take care all of you
 
Thank you for your replies and support.

She took only 1 unit of Trurapi yesterday and no Lantis. Her intake of insulin in minute yet we have had 20 hypos now in 24 hours.
 
Yellow Zebra said:
Thank you for your replies and support.

She took only 1 unit of Trurapi yesterday and no Lantis. Her intake of insulin in minute yet we have had 20 hypos now in 24 hours.
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Sorry to bombard you with questions, I just want to explore every avenue.
Is she feeling hypo symptoms when she records these lows? And if not, is it a CGM that you’re taking the reading from? They can read lower than an actual finger prick, so are you double checking with a finger prick?
When you treat a nighttime hypo, and she falls low again, does the reading go much below 4? (I’m thinking that if it hovers around 4, it could be her body's response, wanting her Blood Glucose in the 4s, because that’s where most non-diabetic people find their readings are overnight, when the body has reached its lowest ebb around 4am. Her 'honeymoon period' natural insulin production might be kicking in, especially if it’s hours since she had any fast acting, and is taking no basal).
Don’t feel you have to respond with answers, the questions are more just food for thought for you.
 
Gosh @Yellow Zebra that sounds like a nightmare 😱

Did she only take 1u of insulin all day?? Or was it 1u for the evening meal?

It does sound like something very odd is going on. Has she been checked for Addisons? Or MODY?

With that many hypos and that low a dose, it feels like you need to speak to your DSN about stopping insulin (perhaps only at certain meals) altogether?

Diabetes can be fickle and nonsensical. And some people find their pancreas gets a bit of a second wind once it has been helped out a bit with exogenous insulin. But this doesn’t sound sustainable for you :(
 
You poor thing. I found the transition back to night time waking so difficult. It’s like having a baby again. But that sounds like something odd is going on. The fast insulin she takes will only stay in her system for about 4 hours with the peak being about an hour after injecting so any hypos outside that aren’t caused just by the insulin.

Have the team talked to you about what she’s eating during the day, how much and what types of exercise and activity she’s doing etc?

For the night time hypos I would make sure she has a decent sized slow carb snack before bed (as late as you can) without insulin. This may help keep her glucose levels up. Set the hypo alarm higher so that you can give her a snack before she goes hypo and help avoid the prolonged low. Stubborn lows can happen but definitely don’t rely on a sensor to tell she’s out of it as there’s a lag and they can be inaccurate if they’re not getting enough fluids. Also make sure she’s well hydrated as lack of fluid can show as a false low although this usually shows as a swift drop.

If the hypos are confirmed by finger prick then over treat. Give 20-25g of fast carbs (making sure she has fluids too), recheck after 15 minutes and if she’s not back above 4 give another 20-25g. I would aim to get her above 6 not hovering around 4. Once she’s back to a safe number give her a larger slow carb snack. Make sure she has fluids again. It’s better for her to run manageably high than to have lots of hypos.

I hope you get some sleep soon. I have had to deal with stubborn hypos and night time waking but not the extent you’re talking about.
 
Are your daughter's levels going high/above range at all or is she just in range or hypo?

Can you tell us a bit about how she came to be diagnosed? ie What lead up to her diabetes diagnosis? Did she go into DKA (Diabetic KetoAcidosis) or were here levels just raised?

Are you aware that lying on a sensor can cause what is often referred to as a "compression low" which is a false low reading. This is particularly likely to happen when you are sleeping but can also happen if you are lying in bed reading etc. so it is always important to double check any sensor lows with a finger prick unless the person is obviously experiencing a hypo. It is also important to check recovery from a hypo with a finger prick and not just a sensor reading 15 mins after treatment with fast acting carbs. The sensor will almost always show levels have dropped lower 15 mins later whereas blood from a finger prick will show recovery.

If these are all genuine hypos then I wonder if she may be suffering from Reactive Hypoglycaemia. This is where the first phase insulin response is slow or delayed and BG levels go high but then the second phase insulin response over reacts to the high levels and brings them down too fast and too far. The problem with this is that eating fast acting carbs or high carb foods triggers this problem, so once levels go high the roller coaster starts and the answer is to eat smaller, low carb meals more regularly rather than 3 meals with plenty of carbs.

I think in your position I might also want a "stimulated" C-peptide test to check how much insulin she is producing and perhaps a scan of her pancreas to check for any abnormality in case something is triggering her pancreas to over produce insulin. We had a young lady on the forum a few years ago who had to have part of her pancreas removed as a very young child, maybe even a baby because it was over producing insulin. I very much hope this is not the case with your daughter and it is just a case of compression lows with her sensor or a very erratic honeymoon period but I do think you need to press for more investigation if you have ruled out compression lows.

Can you post a photo of her Libre graph showing a typical day where these hypo events happen?
 
Yellow Zebra said:
Thank you for your replies and support.

She took only 1 unit of Trurapi yesterday and no Lantis. Her intake of insulin in minute yet we have had 20 hypos now in 24 hours.
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Are these verified by fingerprick hypos and how low are they? I agree with @Robin that it might just be a normal lower sugar (on some occasions). When I was first diagnosed, I stopped my insulin as an experiment and, without any insulin and a normal carby breakfast, my blood sugar was 3.8 by lunch time. Another day it was 3.6. That’s technically a hypo for those on insulin, but I hadn’t taken any insulin that morning so I knew it was ok. I only experimented twice like that, but it was interesting to see.

Perhaps she doesn’t need any insulin temporarily? That happens sometimes, as the damaged beta cells make a temporary recovery.

Addisons has also been suggested above, and that was what I thought of when I wrote about coeliac and other conditions. It’s rare but worth checking for.
 
Also, do you have half unit pens? A full unit might be too much if she is now very sensitive to insulin but half unit pens are not generally prescribed in the early stages of diagnosis unless asked for. Not even sure if you can get a half unit pen for Trurapi but might be worth changing to another insulin that does allow for half unit dosing.
 
rebrascora said:
Also, do you have half unit pens? A full unit might be too much if she is now very sensitive to insulin but half unit pens are not generally prescribed in the early stages of diagnosis unless asked for. Not even sure if you can get a half unit pen for Trurapi but might be worth changing to another insulin that does allow for half unit dosing.
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Oh yes this really helped me. Good shout!
 
rebrascora said:
Also, do you have half unit pens? A full unit might be too much if she is now very sensitive to insulin but half unit pens are not generally prescribed in the early stages of diagnosis unless asked for. Not even sure if you can get a half unit pen for Trurapi but might be worth changing to another insulin that does allow for half unit dosing.
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Well spotted - half unit pens are crucial. Personally I’d also try a change of insulin (if any insulin is needed). No doubt Trurapi is cheaper but if your daughter is only using such tiny amounts, the saving would be minimal.
 
Inka said:
Well spotted - half unit pens are crucial. Personally I’d also try a change of insulin (if any insulin is needed). No doubt Trurapi is cheaper but if your daughter is only using such tiny amounts, the saving would be minimal.
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I use trurapi and it is available in cartridges for reusable pens that do half units. The prefilled disposable one only do full units. I'm trying to get one myself but so far they have said no. Apparently I'm too in control already and they are concerned I am overly worried. Go figure.
 
DianeD said:
Apparently I'm too in control already and they are concerned I am overly worried.
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That's a weak argument. There are lots of reasons to prefer reusable pens beyond wanting half units. (More if the reusable pens are smart pens, but even without that someone might want to use less space in the fridge (or wherever you keep your insulin), less waste, etc.)
 
DianeD said:
I use trurapi and it is available in cartridges for reusable pens that do half units. The prefilled disposable one only do full units. I'm trying to get one myself but so far they have said no. Apparently I'm too in control already and they are concerned I am overly worried. Go figure.
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Really shocking that they have refused you for that reason. It is like they are punishing you for trying to manage your diabetes well. I understand them being concerned about people getting too obsessed and risking suffering burnout but I find being able to have that option between one whole unit and another really helps me mentally. I find it particularly useful with my basal which needs regular adjustment and the difference between 3 and 4 units on a night can be quite significant, so being able to split the difference is really helpful.
You should still be able to change to a reusable pen for whole units (better for the environment and cartridges take up less space in your fridge) and then once you are being prescribed cartridges, if you wanted to buy a half unit pen, there is no reason why you couldn't self fund it, but they can be quite expensive. I think the NovoPen Echo is about £40 to buy and is considered the best on the market but only takes Novo Nordisk insulin cartridges. I am not sure who makes Trurapi or what the pen is called. I bought a spare NovoPen Echo off ebay, just so I had a spare in case of breakage.

Certainly in this case with a child who is suffering so many hypos and is clearly very insulin sensitive, a half unit pen should be an essential tool, to help manage things.
 
DianeD said:
I use trurapi and it is available in cartridges for reusable pens that do half units. The prefilled disposable one only do full units. I'm trying to get one myself but so far they have said no. Apparently I'm too in control already and they are concerned I am overly worried. Go figure.
Click to expand...

Who are the “they” in your sentence? If it’s the GP/diabetes ‘expert’ nurse, it could because they’re not aware of the half unit pens and their benefits. The diabetes ‘expert’ at my surgery told me they didn’t make a half unit pen for my insulin 🙄 Then when I insisted they did, she couldn’t find it on the list and I had to find the code myself and give it to her.
 
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