Struggling with control

[Jessamy]

Hi, I've been a type 1 diabetic for 7 years now. I'm 22 and have just moved to London. I have a lot of anxiety with managing my blood sugar, I have noticed that I cant really tell anymore when I'm getting low blood sugar. I used to be able to tell straight away. I felt shaky, dizzy and had no energy. Today I had a blood sugar level of 2.0 and felt fine. It was only a coincidence that I checked. I am also constantly pricking my finger and checking because of a couple other similar incidents. I also have moments of blurry vision, tingling in my feet and I don't know if this could be a complication from being diabetic as I thought these were long term complications.

I would love to talk to someone that has had diabetes for a long time. I'm interested in what its like to have lived with it for a decade or more and if you have any advice. I have never met/spoken to any one with diabetes so I'm really excited to hear any advice you could share.

Thanks 🙂

 

[Thebearcametoo]

Have you spoken to your DSN about getting a Libre? That would make it easier for you to keep track and save you finger pricking all the time. Lack of hypo awareness is common and you can change your target BG to 7-10 for a few weeks and see if it comes back.

 

[Bruce Stephens]

I have a lot of anxiety with managing my blood sugar, I have noticed that I cant really tell anymore when I'm getting low blood sugar. I used to be able to tell straight away. I felt shaky, dizzy and had no energy. Today I had a blood sugar level of 2.0 and felt fine.

That's a known possible problem, and your healthcare team should take it seriously when you mention it. Awareness usually returns after a week or two of not being low. Your GP (perhaps with prodding from your hospital team) should be willing to prescribe Libre 2 (presuming you aren't already using that) which has high/low alarms, which should help you stay not-low for a while, and with any luck your hypo awareness will return.

 

[Inka]

My initial advice would be to speak to your team about your loss of hypo awareness. Hopefully you’ll be able to improve it by staying a little higher for a few weeks. I’ve had Type 1 almost 30 years and now try to stay above 5. That’s sharpened up my awareness, which was already ok.

It sounds like you don’t have a Libre or CGM. Do push for one asap as that will help a lot. You’ll also be able to see if you’re dropping low during the night and damaging your hypo awareness that way without realising.

You mention tingling feet. How high does your blood sugar go? Do you notice it at particular times eg when running high due to illness?

 

[Jessamy]

My initial advice would be to speak to your team about your loss of hypo awareness. Hopefully you’ll be able to improve it by staying a little higher for a few weeks. I’ve had Type 1 almost 30 years and now try to stay above 5. That’s sharpened up my awareness, which was already ok.

It sounds like you don’t have a Libre or CGM. Do push for one asap as that will help a lot. You’ll also be able to see if you’re dropping low during the night and damaging your hypo awareness that way without realising.

You mention tingling feet. How high does your blood sugar go? Do you notice it at particular times eg when running high due to illness?

Thanks for your reply, I have tried the Libre for a number of months but unfortunately, I developed an allergic reaction to either the glue or metal. It would become unbearably itchy and left a rash when I took it off. I am thinking of trying it again since maybe the newer version is made differently. I was also thinking that the climate in the UK make a difference.

Recently my bloodsugar has been up and down the highest point has been after meals, yesterday it got up to 20, then when I inject to lower it, is goes straight down to 3 in very little time. Some days, I average at 10 and struggle to bring it lower.

 

[Jessamy]

That's a known possible problem, and your healthcare team should take it seriously when you mention it. Awareness usually returns after a week or two of not being low. Your GP (perhaps with prodding from your hospital team) should be willing to prescribe Libre 2 (presuming you aren't already using that) which has high/low alarms, which should help you stay not-low for a while, and with any luck your hypo awareness will return.

I never realised that awareness may be a problem. Thanks for letting me know. I actually have an appointment tomorrow so will defently mention it.

 

[Bruce Stephens]

I never realised that awareness may be a problem. Thanks for letting me know. I actually have an appointment tomorrow so will defently mention it.

Yes, it's a significant problem and fairly common. https://www.diabetes.org.uk/guide-to-diabetes/complications/hypos/hypo-unawareness

 

[Inka]

Thanks for your reply, I have tried the Libre for a number of months but unfortunately, I developed an allergic reaction to either the glue or metal. It would become unbearably itchy and left a rash when I took it off. I am thinking of trying it again since maybe the newer version is made differently. I was also thinking that the climate in the UK make a difference.

Recently my bloodsugar has been up and down the highest point has been after meals, yesterday it got up to 20, then when I inject to lower it, is goes straight down to 3 in very little time. Some days, I average at 10 and struggle to bring it lower.

It would definitely be worth trying the Libre again. You can get barrier sprays if you have a problem but I think the adhesive has been improved since the early ones.

Do you bolus in advance of your meals? You could experiment with moving your injection a little earlier. That should help reduce the spike. Then you won’t have to correct and risk plunging down. That’s a horrible thing to experience. You say ‘recently’. If you mean very recently, I’ve found the extreme heat has messed up my control and made everything quite spiky. If not, can you identify another possible cause - stress? Covid? Hayfever?

 

[Lucyr]

Thanks for your reply, I have tried the Libre for a number of months but unfortunately, I developed an allergic reaction to either the glue or metal. It would become unbearably itchy and left a rash when I took it off. I am thinking of trying it again since maybe the newer version is made differently. I was also thinking that the climate in the UK make a difference.

Recently my bloodsugar has been up and down the highest point has been after meals, yesterday it got up to 20, then when I inject to lower it, is goes straight down to 3 in very little time. Some days, I average at 10 and struggle to bring it lower.

Have you tried taking a daily antihistamine when wearing the libre? I had the same reaction and found that helped keep it manageable. Perhaps that combined with a barrier spray if antihistamines alone didn’t work?

 

[everydayupsanddowns]

Welcome to the forum @Jessamy

Sorry to hear about your loss of hypo awareness, and your wobblier BG of late.

I’m another with 30+ years of pretending to be my own pancreas under my belt, and I’ve been carefully repairing and nurturing my hypo awareness for more than a decade now (having previously preferred to run on the low side).

Hypo awareness can be a fickle thing as your years with diabetes tick by. The first thing to do is to avoid dropping below 4.0 wherever possible. I generally take a small amount of glucose for any readings in the 4s these days (rather than waiting for 3.x to treat), just to head off any possible dips below the red line. Act earlier, and try to predict situations where your levels might dip (shopping… walking to a night out… the day after exercise… dashing for the train…). Taking a little glucose up front can really help.

Hopefully you will be able to get on better with Libre or an alternative sensor as this will help enormously as you’ll be able to check much more frequently. Particularly if you can get access to alarms, and set them to give you a bit of a buffer.

Each time your warning signs fire, your brain adapts to ‘do better’ next time. And because all those hormones etc are quite expensive for the body, the brain changes to attempt to work better at lower levels, meaning you don’t feel anything until your levels are at a potentially catastrophic tipping point where your brain just can’t function. Keeping your levels above 4 all the time will allow your ‘glucose thermostat’ to reset, so you should begin to get warning signs again.

But they may be quite subtle to begin with, and if you have a week or so with more low levels (or some extended periods of hypoglycaemia overnight) they can fade away again all too quickly.

So protecting/repairing my warning signs is now a permanent ongoing project for me. And possibly for you too.

The positive side effect can be that focussing on reducing lows actually cuts out lots of highs too, the hormone rebounds and eat-everything-in-the-house moments, so focussing on cutting hypos doesn’t have to mean constantly running in double figures - it can be a part of overall improvement.

Good luck, and let us know how things go 🙂

 

[SB2015]

Welcome to the forum @Jessamy .

Sorry to hear you have been struggling with your levels, but I hope that the advice above gives you some ideas to try. Let us know how the appointment went yesterday.

You mention the difficulties with the glue on the Libre. Did your DSN offer you an alternative such as a Dexcom sensor which also works as a stand alone sensor?

The other thing I picked up is your post meal highs. As @Inka mentioned these can often be reduced by giving the bolus some minutes before you eat. I find that this varies through the day, and it took me some time to find out what works for me, increasing my times by 5 min each time until I found it worked. You could also consider reducing the amount of carbs you eat at each meal to lower those spikes.

How long after the meal do you wait before you retest and give a correction. Our insulin takes a while to get going so it is worth waiting at least two hours before even looking, and on a sensor you will see a rise and then the turn of the curve as the glucose meets the active insulin. Pre bolusing, reduced portions and and reducing the size of the spikes, could help to eliminate the corrections and so reduce the bin dips afterwards, and so help to improve your hypo awareness.

Keep in touch and let us know how you get on.

 

[Inka]

How do we know @Jessamy is eating vast amounts of carbs at meals?? Did I miss that? I presumed she was just eating a normal amount. It’s the manipulation of insulin that needs attention not the carbs. It’s almost always the insulin.

 

[rebrascora]

Hi and welcome from me too.

Sorry to hear you are struggling with your diabetes management. The others have given good suggestions. The thing that I wanted to add was to ask about an intensive education course. I think people who are diagnosed as children often miss out on this opportunity, because by the time they are adults, they have already had diabetes for many years. The most well known course is DAFNE (Dose Adjustment For Normal Eating) but it is so much more than a "Carb Counting" course. It teaches you how to manage your diabetes more effectively in a whole range of everyday situations and when to spot that your basal insulin needs adjusting.... thinking perhaps that your current difficulties may partly be caused by your basal dose not being optimized.... Most of us find that we need different doses in the summer compared to the winter. Personally I find my basal needs adjusting on an almost daily basis depending upon what sort of activity I have been doing. Longer days, more activity and warmer weather all impact our basal needs. Anyway, one of the other main benefits of the DAFNE course (or whatever your local equivalent is) is that you get to spend a whole week with other Type 1 diabetics and learn from each other. It is a huge eye opener as you realize how different our individual diabetes can be as well as the common challenges and frustrations. You learn to problem solve for others as well as yourself so that when your diabetes changes as it will do during your lifetime, you learn how to deal with the new challenges it throws at you through a structured system.

4 things have been really instrumental in giving me knowledge and confidence to manage my diabetes well.....
1. Being a member of this forum, asking lots of questions and learning from others here.
2. Attending an in person DAFNE course.... there are online versions but being in the same room as other Type 1s and interacting with them for a week is a huge bonus.
3. Freestyle Libre.... Try to find a way to overcome the problems you were having as it is an amazing bit of kit. Your DSN sould have been able to offer some potential solutions to the issues you were having. Hopefully some of the suggestions above will be useful if you still have issues with the adhesive.
4. Carefully experimenting on yourself to find what works for you as an individual, rather than just blindly following the advice or guidance of your health care professionals. Our bodies all respond slightly differently and you are the only person who has enough insight to figure out how your body responds because you live with your diabetes day by day and night by night and meal by meal. You are therefore in an ideal position to become the expert in your own diabetes.... more so than the consultant or DSN who just see you once every few months or annually for 10 mins or so.
One of the key things than changed things for me was learning to prebolus in advance of meals to prevent spiking and finding the sweet spot timing for my body and insulin and food. I really shocked my consultant by telling him that I needed to prebolus 75 mins in advance of breakfast with NovoRapid to prevent my BG levels spiking up to mid teens and then coming crashing down later. I now use Fiasp which is a bit quicker but still need to inject 45mins before I eat breakfast. Just 15-20 mins for lunch and evening meal. That is quite unusual but there are others on the forum who also need that long for their insulin to get going and others who would hypo if they waited more than 10 mins between injecting and eating. Carefully increasing that prebolus time from whatever you do now, by a few mins each day will help you to find the best timing for you at different times of the day. Libre is incredibly helpful in doing this experiment because you can see when the spike is reducing day upon day until you get it right.

Anyway, just a few of my thoughts on what may help improve your situation. Good luck and let us know how you get on.

 

[Proud to be erratic]

Hello @Jessamy,
You asked to hear from others who've had D for a while - and I'm relatively new to this. As @rebrascora says others have given good suggestions. I wanted to pick up on an aspect of 'pre-bolusing'.

Timing of injecting is really important for me. I can look back at less successful days and see that I got the pre-bolus timing wrong. I understand its all about your own body's natural resistance to insulin. We all have insulin resistance, whether diabetic or not; and we're all different - no common formula.

If my actual BG is above 8, better 7.5, then I need longer for any bolus to first bring me down to below 7.5, before that bolus affects any glucose from digestion of that meal. With Libre 2 and frequent scanning I can literally see my own responsiveness to what I'm eating; indeed if I'm going too low too quickly I can eat the higher carb, higher GI foods first and 'turn' that dip before it becomes a low.

I need after pre- bolus but before eating some 45 mins at breakfast, 20+ mins at lunchtime and 10-15 mins at dinner PROVIDING my BG is below 7.5 when I start eating. If its higher then I can quickly swing to above 10 and not get the recovery I was anticipating from my calculated bolus. So I now always wait for my BG to get to 7.5 before I eat; on a bad day that can mean a very long wait which is far from convenient sometimes and does interrupt my desire to live a normal life. But it does improve my control.

Conversely, if I eat when in the low 5s I need very little pre-bolus time and definitely need to scoff the high carb bits first! If in the low 4s I'll take a couple of JBs or a slurp of Lucozade and wait 10+ mins for that to kick in. Again, possible thanks to Libre 2.

Also, if my BG is very high, say above 12, as I pre- bolus I need to harden my correction ratio; my normal correction ratio is 1:2, but can need an extra 20%. Having Libre allows me to adjust doses and see when I'm at risk of going too low from over adjustment. My natural insulin resistance increases with my BG; otherwise I just don't get the correction I'm expecting and then either give in and eat when already too high (thus poor control) or eat a much reduced meal in relation to the bolus I'd calculated for that meal.

Insulin resistance is the diametric opposite of insulin sensitivity. So you may find references to insulin sensitivity and improving control. It's fair to say getting better DM control is not easy and is demanding on your mental strength plus its time consuming; it's also not possible to achieve perfection. I get bad days, despite my best efforts.

 

[EmmaL76]

I know somebody who’s allergic to the glue on the libre, so she got the dexcom on prescription. She’s absolutely fine with that