• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Help needed please—newly diagnosed type 1

H

Haidi

Member
Messages
13
Type of diabetes
Family member
Treatment type
Insulin
Hello,


My brother (23 y.o.) was diagnosed with type 1 about a month ago and it’s been a struggle to get his blood glucose levels under control ever since. He received little to no instructions from his doctors (he lives in the middle of nowhere… long story), so we have been heavily relying on the information available online, managed to get him a CGM, to learn about dosing and carb counting, etc. I’ve learned a lot from this forum as well, so thank you for all your help so far! (Long time lurker, first time poster though so bear with me, please. )


At the very beginning of starting on Dexcom (11 days ago), controlling his BG did not seem that difficult, and we would usually manage to keep it in range for most of the day. As of lately, however, he’s been getting several spikes after his last meal in the evening (around 7-8 pm) that last for up to 6 hours (until 2 am or so). I am a bit lost now and need some more help to figure out what’s causing them and how we fix this.


He is on Tresiba/NovoRapid. I am not sure if his basal dose needs to be changed or if he needs to inject more before meal or even if it’s good to add a correction dose a couple of hours after his meal to prevent the second/third spike… Normally, he would add a correction dose 2-3 hours after his meal or just before bed time, but he did not do it last evening just to see what would happen in that case. We are also afraid of hypos during the night so that’s another issue if he’s to have regular correction doses just before bed time.


I uploaded a screenshot from Nightscout showing his BG last night (roughly from 7 pm to 6 am this morning) to try to illustrate what’s troubling us. The pattern seems to be the same, or very similar, regardless of what he eats in the evening (low carbs, high protein). I assume that high protein could be causing it, but if so, how do we account for that, and how do we avoid hypos after a correction dose? (I remind that he did not take any additional insulin after his meal yesterday evening and the drop that you can see at about 1 am was not related to that, so I’m assuming that if he did take a correction dose, it would have probably ended up in a hypo at time time.)


As you can see, I’m completely lost and would greatly appreciate any help, thoughts, ideas on how to fix this from fellow type 1s or anyone really.


 
Hello and welcome

I'm a type 2 so not any help. A couple of suggestions- maybe try to post on the type 2 part of the forum to get a quicker response.

My other thought is that for type 2s stress and illness can increase the blood sugar levels so not sure about type 1s.

While waiting for some real help maybe start by logging exactly what he is eating and the readings afterwards. That may be able to identify things- maybe log how he is feeling as well.

He is very fortunate to have you in his corner and I am really sorry the medical professionals have not yet given him the help he needs.

Good luck and welcome.
 
Hello and thank you

Many thanks for your reply. I'll repost on the type 1 part as well.

I'm guessing this whole situation has been very stressful for him overall, especially as he was diagnosed after a routine blood test a few weeks after testing positive for the coronavirus. What's confusing me though is that his BG during the rest of the day is not this bad and he's mostly having issues in the evenings.

That's a great idea to keep a logbook of what he eats as well, as up to now I've only written down his doses and timing.

Thanks again!
 
@Haidi I'm afraid we are not allowed to give advice on dosages, your brother should be abel to ask for a referral to a hospital clinic and they should be able to help with dosages and such - and unless his GP has a very good diabetic nurse or doctor who happens to know a lot about T1 then I wouldn't expect too much help from them as they just don't have the knowledge.

Looking at that graph (which is far flatter than mine ever is) you can see his levels dropped back to around 6ish all night so yes it's a good job he didn't take a correction.
Keeping a log is definitely a good idea.

Also note that regarding the basal insulin (thats the Tresiba), our bodies don't always need exactly the same background level as at other times, I know my levels drop between midnight and 3am for instance without any fast acting insulin being involved, so getting a flat line can be almost impossible.
 
Hello, Rokaab, and thanks for your reply.

I understand that this forum should not serve to replace the advice he gets from medical professionals, but in his case, all the advice he had been given on diagnosis was 'buy Tresiba and NovoRapid in a pharmacy and inject the former in the mornings and the latter with meals' & 'don't forget to check your blood glucose in the meantime'. And that's about it. No carb counting and insulin-to-carb ratio, no advice on his diet (except for 'don't eat much sugars'), no advice on hypos, on DKA, on doses management, basal adjustment, CGM... Nothing at all. His GP is either as clueless about type 1 as one gets, or completely indifferent about the condition of their patients. And from what I've managed to gather in my short time on this forum, just about anyone living with type 1 knows more than my brother's GP does, so I'll gladly take any advice I can get on here (or will at least consider it and try and see how it works in his specific case).

We will definitely try to keep a log from now on and try to look for some patterns to hopefully come up with something useful that would help us figure out what's causing these continuous spikes.

Thanks for your help.
 

Hi Haidi, would you mind telling us what you expect to see on his graph? I see that yes, he went over 10 for a relatively short period of time but I'm guessing the 'spikes' you mention are where it pops up but still remains under 10? Forgive me if I'm wrong but it seems that you are worrying because the line is not a flat one? I can pretty much guarantee that NO type 1 gets a flat line which then just pops higher when they eat a meal and goes straight down again. There are a million factors that affect this as well including being newly diagnosed and possibly in the honeymoon period. There is NO way injections done by yourself can mimic the job of a working pancreas which detects exactly when glucose levels are rising & falling and turns things on and off every second. Even a non diabetics graph will not be flat and will 'spike' now and then. I wouldn't even call those points a spike apart from the one that shot up to 12. Again that is not unusual, it is pretty common for an insulin user. I think the one thing you need to understand is that the aim is to try and keep within a certain range and yes, it's great to be able to keep the line steadyish but perfection is NOT going to happen. How does your brother feel at the moment, is he involved in his own condition or does he leave it to you?, part of the problem can be the stress of thinking you're out of control diabetes wise when actually you're doing well. x
 
Haidi said:
His GP is either as clueless about type 1 as one gets, or completely indifferent about the condition of their patients
Click to expand...
That's why he will need a referral to a specialist, because even the best GP's do not have the specialist knowledge to deal with T1.

You can set your profile to show as 'Family member' I believe instead of 'Type1', your profile can affect how people respond to your questions, it may also be useful to update the country of residence, many on these forums are in the UK and I'm presuming your brother is not since he got told to go buy the insulin (it is free on prescription here in the UK), so advice can be slightly different dependent on country.
 
Hi Hiadi
I’m both a GP in the UK and a type 1 for 36 years. I agree with the above comments. You always get a spike after a meal, this is normal to a degree, although if you are taking novorapid a little before meals so it’s active prior to eating this off sets it a bit, but that can cause hypos if you then do not eat in time or what you were expecting. Again looking at the nightscout graph I actually think it looks quick good! Yes as others have said a small spike and then it comes down. Ideally 2 hours after eating glucose levels should return to pre eating level if you’ve counted carbs right and taken the correct amount of insulin etc.
Your ?brother I think you said, also needs a referral to an endocrinologist, certainly newly diagnosed type 1 should be seen in secondary care, often now this is a nurse specialist ... even as a diabetic and GP I see mine at least once a year for a check up and touch base. Even though I may think I know a lot, things are constantly changing and they are very upto date etc. Usually you GP would also ensure your brother is on other screening programmes to see a podiatrist and eye screening annually, and this is part of their annual contractual obligation! He needs to ensure this is being done and not over looked, it’s usually done automatically. The other thing with secondary care for new type 1 is they often run education programmes and offer support in these early days, which GP practices are generally equipped to do. But thsi May vary according to GP and local CCG.
 
Hi, KK123 & rorydork, and thank you for your replies!

Well, I'm a total newbie to all this and it is very likely that I have more than a few misconceptions about how insulin works and what to expect (realistically) in type 1. I was hoping to see an elevated BG that does not last for more than 2-3 hours after a meal, i.e. that it would go back to pre-meal levels if a bolus was appropriate for the kind of food he had had (that is exactly what I'm seeing after breakfast, so I simply assumed that was to expect after other meals as well...).
Now, I've also read that too much fat/protein can prolong this, but I was still thinking that having hyperglycaemia for 6 hours after meal was not normal, and that there had to be something to be done about it. I thought that the sooner he gets it under 7 the better.

Also, I thought that a short spike (going over 10 or even 12) and coming back quickly (e.g. in 2 hours) would be better than being around 9 for 5-6 hours... But maybe I got it all wrong...

My brother is probably still in denial that this has happened to him (he thinks he will be able to switch to medications after a while and/or that this will go away... And I don't have the heart to tell him it won't... ). At the moment, he lives in a small town with no proper secondary care around, so we have started making arrangements for him to see an endocrinologist elsewhere (he will be going back to uni in a few weeks so we were hoping to arrange for him to be seen and then regularly followed up by someone there). I am just trying to help him get his BG levels under control, or at least close to, until he's able to get some more help from medical professionals.

Many thanks for all your help and advice, it is much appreciated! :x
(And I am sorry for my ignorance, I've just started learning about all this...)
 

I'm sorry, I did not realise there was an option to set my profile as a family member when I registered. I'll go back and try to correct that and add/change other things you mentioned, thank you for pointing it out.
 
Haha. Don’t be hard on yourself. It’s a sharp learning curve and with hindsight I think easier as a kid as you just adapt quickly. Things have advanced a long way though. Personally I’d be very happy with that nightscout graph! It takes a lot “of management” I’d say to stay in single digits all the time. Everyone has the “zone” they want to be in but personally I’d rather run slightly higher than”normal” ie around 7-8 then be aggressive and hit a hypo all the time.
If he’s running dexcom you should be able to set it to warn you inadvance if a hypo is likely so he can have a small amount of carb to level off again. Remember CGM is always al title behind his actual blood glucose as it’s interstitial fluid it’s monitoring. Again personally I found dexcom g6 to say I was about 2mmol higher than I was. It’s all relative to what you are doing though. Your carb to insulin ration could be perfectly ok but if he’s suddenly doing more activity then that will also lower blood glucose levels.
In terms of diet yes fat foods will slow the absorption .... pizza is terrible (not that I’m promoting eating it lol) but it is still increasing my glucose levels 12 hours after! Again different people will absorb at different rates.
mom surprised he wasn’t referred at diagnosis as you’ve usually hit a crisis point or have reached DKA.
 
Last edited:

Hi Haidi, please don't apologise, you are doing a wonderful thing for your brother and that's lovely to see and will help him immensely when he settles down. I think the reason they don't tell a person much on diagnosis is because it's a massive thing to take in and too much information at the start can be overwhelming (though of course they need to balance that with what you NEED to know). After a few months or so, patterns may start to emerge and things may settle down, your brother will know what spikes him, when certain things spike him, he will know how exercise affects him, how feeling under the weather impacts and so on. It does take time though and even then something can come along that you just don't have an answer for. A burst of cortisone/adrenaline can send levels shooting up out of the blue and although you may have some control over bolus (food) insulin, you may not over basal as that kicks in over 24 hours...possibly meeting up at an inopportune moment with your own remaining basal when that kicks in. You see?, very complicated! I would say just continue to monitor, don't jump in too quick to address a higher than you'd like reading because that can send the body into a panic and it can start dumping out glucose because it thinks it's going low. Any change you do make to his insulin regime can also take 3 days or more to kick in. Please ask ANY questions you like. x
 

Yes, I guess you are right, and I've already seen how hard it is to stay in range and avoid constant highs/lows even with a CGM on board and the fact that his C peptide levels are still kind of normal (I guess he is still in 'honeymoon' phase).

He had the same thing with his first G6 sensor, with it constantly showing about 1.5-2 mmol/L more than his finger stick, until we finally decided to calibrate on day 8; so that worked like a charm and it was spot on (up to 0.2 difference) for the remaining 2 days.

Pizza is definitely off the table for the time being, as is most of fast food he usually ate before.

Thanks again for your support!
 

I've realised that even I need to be more careful about how much information I share with him, as he had complained that I bombard him with stuff at the very beginning. So I know there is so much to take in and that it is not easy when your life turns upside down all of a sudden... I am truly amazed at how people learn to manage this condition properly day in, day out, so I'm hoping he will soon get there and learn to follow the patterns, and that everything will be a bit easier to handle.


Ah, it takes the whole 3 days for a change to kick in?! That's good to know, I had no idea. I thought that changing his basal by a couple of units, for instance, would create some effects right away.
And that's most kind of you, thank you! I will probably have more questions as time goes by and I'm most grateful that such forums exist and that there are people like you, who are happy to help a fellow newbie.

Many thanks for all your support and help so far! :x
 

You're welcome, it MAY take up to 3 days before any changes kick in but it's best to test a lot when you have made some changes as it's different for everyone. x
 
KK123 said:
You're welcome, it MAY take up to 3 days before any changes kick in but it's best to test a lot when you have made some changes as it's different for everyone. x
Click to expand...

Got it! Thank you. :x
 
Hello, again

I have a follow up question please, also regarding an after-meal spike.

From the screenshot below, could you please tell me if this is what the blood glucose curve normally looks like after having a meal?

Would he have gotten a lower spike if he injected a bit more or maybe a bit earlier (say, 10 min before starting with his meal instead of 5)? I mean, does it look like he counted his carbs right and taken the correct amount of insulin?
I'm so lost because I was convinced we had overdosed for this one...


 

Hi,

Rule of thumb, 20minutes before eating.. However, it depends what the menu was? Fats can slow digestion of the carbs.
Though, to me & my experience. This looks a little like bread?

Can your brother not log in & talk to us? It may take the weight of you if he picks stuff up first hand..
 

Thank you for your reply, Jaylee!

He told me he had a green bean soup, one plain beef burger, one slice of wholemeal bread, and a tomato salad (injected 5U for that as he was at 5.2 at the time so no need for an additional correction dose). He's also just told me that maybe it wasn't 5 min before the meal that he took NovoRapid but more of a 1 or 2.

I'm barely able to make him listen to me at the moment, let alone some strangers online, as he is pretty much still in denial followed by different phases that vary from anger to apathy—which I fully understand and empathise with—so I'm trying to relieve some of the pressure by doing what I can and I will introduce him to the forum once I think he's ready to take control and full responsibility of his condition. He'll get there, it just may take some time...
 
You must log in or register to reply here.
Menu
Log in
Register
Cookies are required to use this site. You must accept them to continue using the site. Learn More.…