So struggling with my diabetes.....

[Anna1]

Hi there,

I have been a type 1 diabetic for 10 years (diagnosed quite late when I was 35). Had great control on Levemir for 10 years although did go low in afternoons and night time but nothing I couldn't handle. Lost 1 stone in weight and started a new job after 15 years in the old one and 2 years in everything has gone wrong with levels. I would be fine in the morning then crash low in the evening really quickly. At the time prior to this was on 48 units of Levemir AM and 14 units PM. Like I said I did used to go low in the afternoons and night time which I would fix with a few guzzles of lucozade but nothing scary but this crash was massive and took a lot of sugar to get BG back up. My carb ratio was at the time 1:10 all day. Now two months later and having been referred to diabetic clinic and nurse my basal rate has dropped more then half tried 22 units of Levemir in the morning and 10 at night but would go high in the morning. Nothing I seem to try works. I have now been put on Tresiba for past 2 weeks but again I am high in the morning and then start dropping low in the afternoon and night. It seems I need a lot of insulin in the morning and very little in the afternoon and evening. I am now taking 19 units of Tresiba AM and am extremely insulin resistant in the morning with a carb ration of 1:4 but come the afternoon I become insulin sensitive and my car ratio goes up to 1:10 or 1:12. Has anyone else experienced these fluctuating levels in basal needs? I have a CGM so I can literally see my BG slowly going down 5 hours after my last Novorapid injection. Not massively so but continously counting down. I can go to bed on 10 and by 5am will be on 6.8 and going down. I know 6.8 is good and not low but I shouldn't have to go to bed on 10 with a basal regime for it then to go down on it's own. My diabetic nurse has suggested I reduce the Tresiba to 18 but then that will only increase the problems I am having in the morning. Just wondered if anyone else have these fluctuating levels from AM to PM? Seems like a lot of people have very flat profiles whereas mine is certainly not and difficult for diabetic team to understand this. Maybe I just need to accept that I will have to reduce my basal and take a lot more novorapid in the morning but just feel anxious about this all the time. Any advice would be great thanks 🙂

 

[Pumper_Sue]

Hello Anna and welcome to the forum,

Have you asked for a pump? If not do so. Another observation perhaps your lunch bolus has a kick in it so would if be an option to have less of a bolus at lunch time?

There are very few people who have a flat basal profile hence why they run into problems with flat profile basal insulin's.

There's no basal on the market that fits my basal profile hence I use a pump 🙂

 

[Anna1]

Hi
Thanks for that. I have discussed a pump but they want me to try everything else first and as I have only encountered major problems in the last 2 months so they want me to keep trying for longer. My Endo seems to think that basal profiles should all be flat and can't understand that mine isn't. He told me it is very unusual to have different insulin needs throughout the day even when I told him that I was going low in the night 6-7 hours after my last novorapid with meal. He wants me to keep raising my basal insulin until my morning ratio is 1:10 but I have explained to him if I do that I would seriously drop in the evening and the night as my basal needs are far less in the evening that then morning. The diabetic nurse does seem to understand this better but she just keeps saying to keep going and I will get there in the end. I have brought up the pump but they don't seem that keen or have even mentioned it. Was with GP for a 10 years for my diabetes then when encountered problems asked to be referred to diabetic clinic thinking I would be more supported but haven't really found that to be the case so far

 

[Anna1]

on another note.....when you started on a pump was it difficult to work out the righ basal levels?

 

[Pumper_Sue]

Hi Anna,
Ask your GP to refer you to a pump friendly clinic/hospital. Look on INPUT for hospitals in your area that support pump therapy.
To sort out your basal on a pump it means loads of basal testing and can take weeks for some people to do so it's just a case of skipping meals for that time block until you have it right. With a pump you can set the basal pattern by the hour or two hours depending on the pump you have.

When you start pumping it can be very frustrating and many a person has thrown their toys out of the pram in frustration 🙂 But you get there in the end. Yep it's hard work to start with but then Rome wasn't built in a day and the quality of life if so much better at the end of the day.

 

[mikeyB]

Hi Anna, welcome to the gang. I note that your Endo was surprised your basal profile varies during the day. Where has he been? I think everyone changes during the day. Like you, my ratios change morning and evening, but I've managed to cope with split dose Levemir and Humalog and just tweaking doses. (I was offered a pump, but living on an island makes it almost impossible, because my care would be transferred to Paisley 60 miles away.) It can be done, but it's easier with a pump.

 

[Robin]

Hello, Anna, I'd echo MikeyB's comment, where's your Endo been!
I also have a huge rise in my blood glucose, starting from about 3am, then accelerating the minute I get out of bed. I can see it happening on my overnight Libre trace. My morning bolus isn't so much a question of ratio, it's a 'stick two units in as a matter of course for the Dawn Rise, then calculate on a 1:10 for what I'm actually eating.'
Trying to get my basal to fit would be impossible. Take enough to sort out the morning rise, and I'd have a steep drop in the first part of the night and be hypo by 3am every night, take enough to keep me steady overnight, and I'd shoot up to double figures by the time I'd got up. For the time being, covering my morning rise with extra bolus seems to work, so I'm sticking with it, but a pump would be the only way of actually sorting basal properly.

 

[Anna1]

Thanks for all your comments - it's great to hear I'm not alone - the way my Endo talks I feel like I'm the strange one and all other type 1's are doing great with a flat basal. I did think well if everyone has such a flat profile why do some people get a pump - my Endo just will not accept that you levels vary and that a flat basal does not sort this problem out but actually makes it worse. Like you I think Levemir is probably better in that you can split the dose and tweak it but my Endo wanted me to try Tresiba which is completely flat. It is a lot more slow and steady then Levemir but still means I start going low in the evening and night which means I am having to leave my BG on 10 when I go to bed to get down to about 6.5 by 4am - so frustrating!!

 

[grovesy]

I am not Type 1 or insulin but know from reading on here and elsewhere, many people use different ratios at differnt time of the day. Also makes sense to me for the body to have differnt needs at various times.

 

[Lucy Honeychurch]

My insulin requirements change throughout the day also, I'm much more resistant in the morning and more sensitive evening/night.

 

[TheClockworkDodo]

Welcome to the forum, Anna 🙂

I am also wondering what planet your endo is on! My insulin needs vary hugely throughout the day - my ratios for bolus are 1:10 in the morning, 1:23 at lunchtime; and 1:18 in the evening. And like Robin my bgl starts climbing as soon as I wake up in the morning, so that my morning bolus has to be done first thing. I can't inject more than a few minutes before lunch or dinner because I'd hypo halfway through eating, but I can inject as much as half an hour before breakfast.

Trying to adjust my basal to fit around that would be impossible - I just have a very tiny amount (currently 4 units) at bedtime to give me a bit of background at night, and everything else is catered for by my bolus. Even so, like you I find my bgl continues to drop after the Novorapid has left my system, and I often hypo just before my meals. I snack a lot, including last thing at night, to try to stop the hypos.

I changed to Tresiba last year, and while it's a big improvement for me over Lantus, it hasn't stopped the frequent hypos or the morning highs. It has made me see much more of a pattern to them (Lantus was awful - random hypos all over the place, no pattern that anyone could see at all). So I'd say it's more stable, but it's IT which is stable, not the person using it! We are not stable, we are individuals, not test tubes - our needs vary throughout the day, and also vary if the weather changes, or we're stressed, or whenever there are other outside factors which happen to effect us. The stability of our basal is not going to stop that.

I would certainly try reducing your basal and increasing your morning Novorapid to see if that helps. I'd also try asking to be referred to a different diabetes team, if you can, or at least to a different endo. And as Sue says, a pump might be the best option in the end, so a pump-friendly hospital sounds a good idea.

Good luck, and do let us know how you get on.

 

[trophywench]

The bloke needs to go back to the classroom. Urgently.

No human body (can't speak for other species) has a flat basal profile - and no insulin yet invented has a flat profile either. They all have peaks, some more marked and longer-lasting than others - and all last for different lengths of time in the body. So - even if we all really had flat profiles - as there isn't an insulin with a flat profile yet - we'd still be up a gum tree without a paddle! What a twerp. (she said, more politely than what she was really thinking!)

Sometimes one can practice juggling and fiddle with basal doses and timing of them so that the insulin profile thus produced better follows the person's body's requirements, which is what most of us did for however long before we went 'Blow this for a game - I just CAN'T win! - I give up - gimme a pump!'

Yep - to INPUT to see where the closest hospital to you, that is 'pump friendly' is situated and then go to your GP and ask for a referral to them.

 

[Anna1]

Thank you everyone - so nice to speak to people who understands

 

[everydayupsanddowns]

Hi Anna

Good advice from people already. I have to take account of my liver playing tricks by dumping glucose just after I get up. To counteract, I generally add a cautious 'correction' up front which allows me to keep my ratios more even and scalable (if I have it right for a small breakfast I would go low with a bigger one). The amount of the correction varies through the year, but is generally fairly consistent day-to-day. Not suggesting you do this, but it works for me!

 

[Amity Island]

Hi
Thanks for that. I have discussed a pump but they want me to try everything else first and as I have only encountered major problems in the last 2 months so they want me to keep trying for longer. My Endo seems to think that basal profiles should all be flat and can't understand that mine isn't. He told me it is very unusual to have different insulin needs throughout the day even when I told him that I was going low in the night 6-7 hours after my last novorapid with meal. He wants me to keep raising my basal insulin until my morning ratio is 1:10 but I have explained to him if I do that I would seriously drop in the evening and the night as my basal needs are far less in the evening that then morning. The diabetic nurse does seem to understand this better but she just keeps saying to keep going and I will get there in the end. I have brought up the pump but they don't seem that keen or have even mentioned it. Was with GP for a 10 years for my diabetes then when encountered problems asked to be referred to diabetic clinic thinking I would be more supported but haven't really found that to be the case so far

Hi There, I am having similar problems at the moment. The local diabetes centre have been less than helpful, actually giving wrong advice! I asked about taking extra insulin to make up for the current lack of basal, she said you only correct for the high, not the shortfall of current basal! How wrong is that? It's all self management with type 1 diabetes, that coupled with a work, life and family is to so tiring. You say you halfed your morning levimer and this was by too much, so you must need somewhere between 22 and 48? That's quite a range to find.