Type 1: Told to run high numbers. Is this ok?

Hi @JoeCo
your care team are giving you good advice
I had a pretty bad episode 15 years ago , ended up in A&E -- My care team advised running "high" (7-11)
for approx. 6-8 weeks to allow my body to readjust and get my hypo symptoms back.
I also didn't drive for this period and fortunately regained awareness.
the last 3-4 years it has deteriorated again and 1 year ago I was fortunate to get a pump.
bloods are more stable and with much less lows now.

JoeCo said:

But is this really ok?

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The running higher bg levels for several weeks is the usual advice to help restore hypo awareness symptoms @JoeCo

I'd go along with your diabetes teams advice and hopefully the symptoms will return, especially if your driver as you don't want to jeopardise your ability to hold a driving licence. Good luck.

Technically it would work... but so would running numbers from 5-8... basically whatever your 'average range' is will be where your body begins to set its hypo awareness.

When i was first diagnosed my numbers were always up around 10, and i would feel hypo at 6 and freak out. Now with numbers between 4.5-8, i feel my hypo coming on anywhere under 4.5..

Without going against doctors orders, if this was me - I would stay above 5 consistently for a while, but no higher then 10 lol This is just what i would do, not advice lol Maybe see if you can talk them down from 12, and see why exactly they picked that range.

Did you get advice to male sure you change your target range or level on your blood testing machine?

I would go along with health peoples advice.

According to my consultant a lot of complications and the likelihood of getting them is down to our genetics... Nobody can really quantify how much damage may be done but in terms of a lifetime a few weeks of higher levels is insignificant really.

I think hypos can cause significiant damage too...not only to us but others if driving etc.

For me, the quick come on hypo's are the ones that are less felt with awareness. Ones when gradually falling due to basals being wrong have never been an issue. It sounds as if you have identified some issue with food bolysing but if waking up to 4's there may be an issue there too that needs addressing...

Diamattic said:

Technically it would work... but so would running numbers from 5-8... basically whatever your 'average range' is will be where your body begins to set its hypo awareness.

When i was first diagnosed my numbers were always up around 10, and i would feel hypo at 6 and freak out. Now with numbers between 4.5-8, i feel my hypo coming on anywhere under 4.5..

Without going against doctors orders, if this was me - I would stay above 5 consistently for a while, but no higher then 10 lol This is just what i would do, not advice lol Maybe see if you can talk them down from 12, and see why exactly they picked that range.

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your advice is somewhat helpful but also a bit confusing..............Technically it would work... but so would running numbers from 5-8... followed by............. I would stay above 5 consistently for a while, but no higher then 10

the whole point of running higher than what you have been used to -- is to retrain your body to know what a low blood sugar is .
Running between 5-8 wont really accomplish this as running between 5-8 is an ideal recommended range for type 1 diabetics.
To retrain an increased level of 2-3 above 5-8 mmol is normally required for a few weeks.

also the OP does not have pump and CGM as you do to assist your control of levels as he is only diagnosed recently.

Diamattic said:

Technically it would work... but so would running numbers from 5-8... basically whatever your 'average range' is will be where your body begins to set its hypo awareness.

When i was first diagnosed my numbers were always up around 10, and i would feel hypo at 6 and freak out. Now with numbers between 4.5-8, i feel my hypo coming on anywhere under 4.5..

Without going against doctors orders, if this was me - I would stay above 5 consistently for a while, but no higher then 10 lol This is just what i would do, not advice lol Maybe see if you can talk them down from 12, and see why exactly they picked that range.

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I agree, but without many more test strips or a continuous monitor, it's not easy. I have recently had problems due to other issues causing no hypo symptoms and have had larger supplies of test strips - and now it is possible to aim for below 10.0. Without the help of more tests or a monitor i am not sure it can be done- maybe this is why 12.0 or so is suggested?

ann34+ said:

I agree, but without many more test strips or a continuous monitor, it's not easy. I have recently had problems due to other issues causing no hypo symptoms and have had larger supplies of test strips - and now it is possible to aim for below 10.0. Without the help of more tests or a monitor i am not sure it can be done- maybe this is why 12.0 or so is suggested?

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OP is in the uk. Nice guideline 17 1.6.11-12 provide that type 1 diabetics should be supported to test 4-10 times a day or more (with no maximum limit) if there are issues with hypo awareness.

@JoeCo If you have got no hypo awareness, then running tight is going to be difficult, that's probably why they are saying stay over 5 because running at 4.4 doesn't give you any margin for error and if you don't notice at 3.4 then you won't notice dropping under 4 and this will just prolong the period when you will be aiming to run higher.

Also glucose monitors are allowed a 15% error range. So your monitor reading could be 4.4, but you might actually be 3.7, which won't help your hypo awareness at all. Whereas if your metre is saying you are 5, you could actually be 4.2. Which even according to Schneider is too low to be doing anything for your hypo awareness, really the lowest reading you want to see is 5.2.

What's your hba1c? Running at 5-12 for a few weeks will not be doing anything quantifiable to increase your risk of complications. Whereas losing hypo awareness within a couple of months is concerning. Loss of hypo awareness impacts quality of life, you aren't allowed to drive, waking at 3.9 suggests you might be hypo overnight which creates a risk from nocturnal hypos, there's some suggestion that frequent low lows have a long term impact on cognitive function. Being hypo impacts of how you react to insulin/ food for the rest of the day, making your blood sugar management more of a challenge. So any minimal increased risk from running higher for a few weeks (such risk will be infinitesimally small) will be offset by the benefits of regaining your hypo awareness.

In terms of estimating your bolus dose, have you done or been offered a carb counting course? Do you know your insulin to carb ratio and how to keep any eye on whether that is the correct ratio? Do you carb count and use things like myfitnesspal and carbs & cals to help you. If you use carb counting you should get away from estimating and be able to be more confident that you have accurately calculated the correct dose. If you haven't done a course, or want a refresher, have a look at the free online course - http://www.bertieonline.org.uk

JoeCo said:

I already have what I think are major problems: frequent tingling in my hands and slight but noticeable pressure/discomfort in my eyes, especially at night. It comes and goes. Had the onset symptoms for months before diagnosis, the thirst started in March. Dismissed it all as stress as it was my final year at uni, so now I'm thinking there must have been a lot of damage during that time!

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I'm just a couple of months ahead of you in this journey and can identify with what you say (and the worry!). I had neuropathy in my thighs when I started on insulin but I'm glad to say it's completely passed now - there's no reason yours won't too in a few weeks.

It's no good giving yourself a hard time about the past, you can't change it, and in all probability your imagination is running riot! My experience is that you're going through a massive change and need to just let your body stabilise. Four months after my diagnosis things are settling down and it's staggering to look back and see how much things have changed over such a short time.

Good luck and just let your body recover!

@JoeCo, Just skimmed through the thread and it seems like you've been given some great advice and also a lot of advice that doesn't really concern your query...

What @himtoo and @noblehead have advised is correct. Running higher than ideal target range for a period of weeks is correct procedure. Full stop.

After reading those two posts I got confused, lost and concerned.

Good luck to you and getting your awareness back. It's one of the most important assets you have as a diabetic. I would say "look after it", but that's easier said than done.

I wish you all the best.
Grant

Our bodies are far more resilient and better at recovering than some people give them credit for. That's not to say that the symptoms you're experiencing are guaranteed to go away, but they certainly did for me.

In January 2015, I had a fasting glucose of 10 mmol/l. Admittedly, I had no idea what that meant at the time and no one told me it was a major sign. It wasn't until September (8 months later) that I was officially diagnosed with type 1. By that time I had lost 35-40 lbs, my hair was extremely thin, I had a horrible rash on my back, and exhibited many of the symptoms most of us have when we are diagnosed.

It's crazy to type that now as a I realize how oblivious I was, but I share that to you because every single one of those symptoms and issues no longer affect me at present. My kidneys show perfect health and function, my eyes show no signs of neuropathy, and my hair is back to being very thick (odd for a 28 year old male). The fact of the matter is, aside from needing insulin injections there is nothing about me physically or in my medical records that says I'm not otherwise in perfect health.

I realize that took us a bit off-topic, but I know what you are going through and I think it's important that you do your best to get adjusted to the new life changes and then assess what is temporary and what is permanent.

Addressing the initial question about what is "Safe," that is for you to decide with your healthcare team. Personally, I would be very okay with running higher (8-10mmol) numbers for a couple weeks if it meant regaining my hypo awareness. I'm very lucky to have almost perfect hypo awareness where I feel perfectly fine at 4mmol but know almost immediately if I drop to 3mmol/l. I consider my hypo awareness extremely important even though I have a Dexcom. Without my CGM, hypo awareness would be even more important.

JoeCo said:

Hi, I was recently diagnosed with type 1 diabetes in early August. Successfully brought numbers back down and was waking up most mornings with 3.9-4.0. The problem is I was getting too many hypos, mainly because I was overestimating how much NovoRapid I needed with meals. It led to hypo unawareness at levels around 3.4. So my diabetes team was concerned and I've been told to run numbers between 5-12, ideally at the higher end to bring back hypo awareness. Currently waking up with 7s.

But is this really ok? How much long term damage can this do? Read in 'Think like a Pancreas' (Scheiner) that running no lower than 4.4 for several weeks is how to bring back awareness but my diabetes team is actively encouraging numbers well over 5. I realise it's important to reverse hypo unawareness, but isn't it more sensible to still aim for as low as possible at all times (without causing a hypo, obviously). I'm really paranoid about this.

Thank you for any advice.

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Hi there,
Have you thought about using a continuous glucose monitor (CGM) whilst you get to grips with things? Not sure that running high numbers is entirely necessary - it also sounds as though you may still producing some insulin too (a more standard ratio is 1:10 insulin to carb).
Any questions, feel free to get in touch with www.teambloodglucose.com