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Hello and a brief introduction

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Eternal422

Eternal422

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Hello everyone! Initially diagnosed as Type 2 at age 42, but very quickly progressed to insulin and current diabetes healthcare team consider me a late onset Type 1 (GAD antibody tests were inconclusive having been done quite some time after my diabetic symptoms appeared).

After initial care under my local hospital to get me started on a basal-bolus insulin regime I was discharged back to my GP for many years to continue under my own steam and achieved fairly good BG control.

After a house move and a new GP, they referred me to the hospital (now having virtual appointments!) who have got me on the Freestyle Libre 2 as well as getting me to make changes to my insulin dosing to improve my HbA1C which had just crept up outside the “normal” range.

Looking forward to learning more from everyone here and maybe being able to help some people with my experiences!
 
Hi and welcome.

Great to hear that you have Freestyle Libre now you finding that? Did you get any training or do the Libre Academy modules on the Abbott website? Understanding the differences between Libre readings and BG readings and the Libre system's limitations and foibles can be useful, particularly if you have been reliant on finger pricking for quite a while. The extra information Libre gives you is amazing though.

Which insulins are you using? You must be doing something right if you have managed to maintain your HbA1c in the normal range until fairly recently. That is good going!

Is there anything particular which brings you to the forum at this time ie. any specific problems or questions or are you just wanting to compare notes with others in a similar situation? Whatever caused you to join the forum I hope you will make yourself at home and that you find it as beneficial as I have over the past 3 years since I joined. Look forward to getting to know a little more about you....
 
rebrascora said:
Hi and welcome.

Great to hear that you have Freestyle Libre now you finding that? Did you get any training or do the Libre Academy modules on the Abbott website? Understanding the differences between Libre readings and BG readings and the Libre system's limitations and foibles can be useful, particularly if you have been reliant on finger pricking for quite a while. The extra information Libre gives you is amazing though.

Which insulins are you using? You must be doing something right if you have managed to maintain your HbA1c in the normal range until fairly recently. That is good going!

Is there anything particular which brings you to the forum at this time ie. any specific problems or questions or are you just wanting to compare notes with others in a similar situation? Whatever caused you to join the forum I hope you will make yourself at home and that you find it as beneficial as I have over the past 3 years since I joined. Look forward to getting to know a little more about you....
Click to expand...
Hi there and thank you for the welcome!

My last HbA1C was about 56 if I remember correctly, so just creeping up a bit. I am using Levemir at night, currently 28U and on the hospital’s advice have changed my Novorapid from 1U : 10g CHO to 1U : 8g CHO.

I had the initial webinar from Abbott to start me off and have done the Academy modules. Only on my first sensor which was great for 4 days and then suddenly started reading around 2.5 lower than BG even when BG has been stable for a period. I understand the differences between BG and ISF testing and pleased with the first 4 days being “close enough” to make insulin dosing decisions. However now I’m wondering whether I can trust the system to that extent.

That really is the reason I joined now, to try and learn more about the system and improve my overall control. I’m so grateful that my local health centre have referred me to the hospital and their care has been brilliant, including getting me on the Libre straight away!

I now feel that I want to learn from others to help me as well as possibly being able to help others with my experiences. There are times when I “fall out” with diabetes and testing, carb counting and taking insulin every time I eat become very wearing. So hopefully I can take some comfort here, getting and giving care and support.

Your HbA1C figures look really good - a massive improvement from your diagnosis! Especially given a chunk of that time was during lockdown! Interesting you went onto insulin almost straight away rather than the usual route of diet then Metformin ( which did absolutely nothing for me ). But it must be working well for you given your figures and a good call from your doctor/diabetic team.

Take care and looking forward to chatting more!

Tony
 
Hi again.

Interesting that you just take Levemir just once a day and on an evening! Not sure if you are aware but it it usually split into a morning and evening dose as it doesn't really last a full 24 hours.... usually about 16-20hrs depending upon the dose. I am on a similar number of units to yourself but I need much more in the morning and a lot less in the evening. I find that my needs vary quite a bit, particularly the night time dose. Today I injected 22u in the morning and 5 yesterday evening, but tonight I will probably just take 3.... maybe 3.5u as I have been quite active. I love my Levemir for the flexibility it provides to enable me to adjust my doses to fit my needs and the Libre for enabling me to see whether my current dose is holding me steady or if I need an increase or decrease.

Actually I was originally started on Metformin and Gliclazide and a low carb diet but the medication did nothing and whilst the diet was effective to some extent I had to whittle it down to very low carb ( it felt like eating cardboard as I was following NHS advice, so low fat and low salt etc as well, to get BG into single figures and after 6 weeks they started me on insulin as my HbA1c had gone up instead of down. Had the GAD and C-peptide about a month later and was confirmed Type 1 2 months after that when results came back. I remained on the Metformin for another few months but the Glic was stopped as soon as I was started on insulin. I think there is a broad spectrum of how Type 1 exhibits and is treated in more mature adults. I am just very thankful that I didn't experience DKA .... and hope I never do.

Sorry to hear you are having problems with Libre 2 already. I have been using the original Libre (1) which doesn't have the alarms and whilst I knocked a couple off reaching into animal feed bins or in the shower and had a couple that started reading low as you describe..... which can sometimes be because it has been dislodged slightly if it got knocked or caught on bra straps etc, they have mostly been really reliable and I often go days without finger pricking at all.
I have just applied my first Libre 2 sensor today and I am monitoring with trepidation as some people have found they have had lots of problems with Libre 2 when they had no problems with Libre 1 and others find Libre 2 more accurate than Libre 1 and very reliable. It is hard to know if there have been bad batches which some people have been supplied from or if they have changed something with the Libre 2 and it is not suiting some people's body chemistry so well or if it is to do with the phone/software people are using. We have the odd member of the forum who has had 50% failure rate with Libre 2 which is really shocking and of course totally knocks their confidence, as it has obviously done with you already, having your first one fail. Fingers crossed your new one is better.... and that my first Libre 2 behaves itself. So far I have had a couple of incidents when it hasn't behaved quite as I would expect my normal sensor to work.... Normally Libre 1 reads lower than BG and will show me hypo when I am usually mid 4s. Tonight I felt a bit hypo but the Libre 2 was persistently showing me 4.8. I had some carbs anyway, but my heart continued to pound and when I did a finger prick, which I should have done earlier of course, I was 3.9 despite the carbs I had had and Libre was eventually showing me as 3.8 so pretty accurate but I had probably been hypo for about half an hour then, so it seems to be a bit further behind the curve than Libre 1 is for me.... I am just using the Libre 1 reader with the Libre 2 sensor because I don't have a smart phone so I don't have the alarm functions and not really interested in alarms to be honest as I have pretty good hypo awareness. It is only day one though so we will see how it goes from here.

Anyway, great to have your experience added to the forum resources and look forward to learning from you as well as perhaps sharing tips with you that I have learned from others here.

Have you ever been offered a DAFNE course? Just thinking that that was instrumental in my Levemir dose being split and learning how to adjust it with more confidence.
 
Hi again, interesting you should mention about splitting the Levemir, I had been wondering whether that was needed, especially as before the Libre sensor started reading low and playing up, it was showing a gradual rise in BG during the day so that was always battling high BG in the evenings. On my last consultation with the hospital I did ask if taking it just at night in one dose was still correct and they said yes. But maybe they didn’t want me to make too many changes in one go, already suggesting increasing it 2U at a time for a couple of days as well as changing my carb ratio from 1:10 to 1:8. But I will ask next week when I have another virtual consultation with the , so thank you for bringing this suggestion up!

Interesting that your path was similar to mine, although sadly for me the GP had just automatically assumed I was T2 and didn’t do the GAD/ C-Peptide test until it was too late to get a conclusive result, but I did get onto insulin fairly quickly. Really glad they managed to get yours diagnosed and under control so quickly!

I wasn’t offered the DAFNE course, but when I switched to basal-bolus insulin (after asking for it from the GP), the hospital I was referred to did a great job in educating me and getting me sorted!

Really pleased to hear that Libre does work well for the majority of people and I hope your experience of the Libre 2 is positive. I’m just hoping that this sensor is a glitch and going forwards that my experiences will be much better. It’s such a useful tool and I was starting to learn more about what foods do what to me and how to better adjust my insulin to keep under tighter control. Fingers crossed the next sensor will be good and I’ll start having some useful data to help!
 
Thanks Bruce for the info. Seems like I really need to split the Levemir dose and I’ll definitely bring this up next week on my hospital appointment. I’ll take a look at the links too - after so many years I’m feeling that it would be well worth refreshing my knowledge and bringing it up to date too!
 
Well, had my phone appointment yesterday with the hospital and talked a lot over with my DSN. I asked about splitting the Levemir dose but my DSN said that for the time being it would be best to continue as I am without making too many changes in one go. I’m changing from my old 8mm needles down to 4mm (apparently 8mm is now considered to be too much and the shorter needles should ensure the insulin is injected in a more useable position) and continuing with 1:8 carb ratio, titrating the Levemir up further if needed to achieve better results at fasting and then throughout the day. I’ve also got a dietician appointment, but not until October. I also have a new range of 4.5 to 8.9 (previously I was using 3.9 to 10), something which should help me to get tighter control and improve my HbA1C.

But, you know what has affected me more than anything? They have confirmed that I am Type 1. Initial diagnosis was Type 2 at age 42 but very quickly it became apparent that first diet, then metformin wasn’t working so I was onto insulin within a short space of time (probably as much as 2 to 3 years, but that was more down to the GP at the time going through the diet then metformin pathway). My nurse said that how my BG was reacting to the injected insulin (and the amount needed) also proves that my pancreas is not generating any at all. Apparently the consultant would call it “presumed type 1”.

I guess I suspected / knew this all along, but having it actually verified has somehow hit me emotionally. Nothing changes of course to how I’m managing it and I now have some super support from the hospital team so all positive. Maybe after 20 years it is starting to sink in a bit and leaving me feeling a little knocked out about it!
 
Another advantage of the shorter needles is that they can be thinner, so they're a bit nicer to use (the shorter length is also nicer of course).
 
Bruce Stephens said:
Another advantage of the shorter needles is that they can be thinner, so they're a bit nicer to use (the shorter length is also nicer of course).
Click to expand...
Hopefully I won’t get as many bruises either!
 
Sorry to hear the confirmation of Type 1 has knocked you sideways a bit. I think there is always an element of hope with the Type 2 diagnosis that somehow you might be able to push it into remission whereas the Type 1 diagnosis is a confirmation of a lifetime of injecting insulin. I know you have already been on insulin a long time but I guess it is the finality of it.
I do wonder at them adjusting your bolus ratios instead of getting your basal right first because when you come to sort your basal out, those ratios will likely need changing again. Basal doses are the foundation of good management. If your basal dose(s) are correct or as close a fit as possible then everything else makes sense. If basal isn't holding you level in the absence of food then you are starting on uneven foundations and that will mean you have to keep correcting as you go along, but no doubt they will have their reasons. Just seems odd to me. Hope the smaller needles are more comfortable and that your new Libre sensors behave impeccably to make up for the failure of your first one.
 
Thank you Barbara, you are spot on : I guess I was thinking that I might go into remission or something, even though deep down I knew I wouldn’t. I feel somehow a bit more vulnerable in a way, even though nothing has changed in my health or treatment. Having health anxieties doesn’t help which I think is why I focus on the technical aspect of things to avoid going down the path of worrying about diabetic complication, etc. even though I am getting all my regular screening and there are thankfully no issues.

My DSN did say about increasing the Levemir which I’ve done but not sure whether that’s quite correct yet. I’m hoping the Libre will be a big help in showing me how that’s working. What you say about a stable foundation makes perfect sense, so I’ll see how it goes. My DSN did say that she would look at reviewing everything with regard to basal, bolus, carb rations and correction factors on my next appointment in November by then hopefully I’ll have loads more data, fingers crossed for some good Libre sensors!
 
Just a quick update : sensors now on my repeat prescription and first couple now received. Also now using the 4mm needles (down from 8mm) and I must say they are brilliant! I was doing the, apparently out-dated “pinch an inch and inject into that” with the 8mm, now with the 4mm no more pinching and I can painlessly inject across a much larger area of my tummy - great for varying injection sites and avoiding the dreaded lumps with unpredictable release of insulin! Maybe no more bruises as well!

Oh, and the replacement sensor is running well. I’ve decided to use the Libre for making bolus decisions and trust in it rather than doing finger pricks and worrying about whether the sensor is accurate or not. I guess it is like comparing apples and pears and ultimately not worthwhile. My DSN did say to trust the sensor and bolus based on its readings, so here goes!
 
Thanks for the update Tony, and glad you’ve found us 🙂

I guess it’s not unexpected for the confirmation of your diabetes type to have knocked you sideways a bit - I guess it’s a bit like getting diagnosed all over again!

But it’s great that you have access to Libre2, and as a T1 (should you become interested in it) you could always explore pump therapy or ‘hybrid closed loop’ (where pump and sensor work together with a degree of automation) if you end up with some frustrations of insulin dosing that you just can’t seem to fix with injections.

Once you’ve got used to your new meal ratios if I were in your shoes I’d probably not spend that much time tinkering with single dose Levemir, if I was planning to try a split dose. As @rebrascora says, I see basal as my foundation, and getting / tweaking that ‘right’ on an ongoing basis seems to fix most of the problems I am having with meal doses/corrections.

When I was on injections I came across the concept of basal testing, and it made a huge difference, suddenly removing much of my diabetes randomness (that ended up being related to wonky basal).

There’s a write-up here if you think it would help you

www.mysugr.com

How To Successfully Test Your Basal Rate

Are you looking for basal rate information and testing instructions? Perfect! You're in the right place!
www.mysugr.com www.mysugr.com
 
Hi Mike and thank you so much for the link to basal testing. I’ve had a quick read and keen to give it a go, so will be reading it thoroughly before making a start. It makes perfect sense to get the basal right first and rather than wait until my next appointment at the end of November it seems sensible to start now.

Had some high spikes today up to around 15 which is not normal for me, but we are away this weekend and eating different things where I’ve had to guess at carbs. Also a few drinks which despite carrying carbs do always seem to bring my BG down a fair bit. My sensor is showing around 4 now which feels a bit low to how I feel, but I’m resisting doing a finger prick test and just going with the Libre as I really want to trust it and go with what it is saying, otherwise it sort of defeats the purpose if I’m constantly checking it!

So glad I’ve found this forum, even though been a member of DUK for years I’ve never ventured into here and wish I had years ago as there is such a great wealth of practical experience from everyone here.
 
Eternal422 said:
My sensor is showing around 4 now which feels a bit low to how I feel,
Click to expand...
When my Libre says 4 I tend to assume I'm fine. (They usually read a bit lower than test strips and even if it's accurate 4 is in the normal range so I expect to feel normal, no different to 5 or 6 or 7.)
 
Thanks Bruce, it’s great to get confidence from you on this. I would start to feel a hypo at 4, but as you say, the Libre reads a bit lower than BG so treat 4 as normal. In fact another scan tells me it is now 5.5 so was starting to rise a bit anyway.

It’s all a bit of trial and error anyway I suppose, it’s just that the Libre is giving me so much more information than I’ve ever had before. But really loving it!
 
Conversely, in an effort to reduce my exposure to 3.x’s to protect my battered warning signs i’ve been treating readings in the 4s with a little something for a few years.

Partly because sensors are showing me what me levels were 5-10 minutes ago, and it doesn't take much of a drift for 4.x to become 3.x in 10 minutes.

The trick is to treat cautiously and keep an eye on things, so as not to end up bouncing up too high. I’m happier in the 5s and 6s generally.
 
everydayupsanddowns said:
Once you’ve got used to your new meal ratios if I were in your shoes I’d probably not spend that much time tinkering with single dose Levemir, if I was planning to try a split dose. As @rebrascora says, I see basal as my foundation, and getting / tweaking that ‘right’ on an ongoing basis seems to fix most of the problems I am having with meal doses/corrections.
Click to expand...
Just a quick follow on question about this if I may? New Libre sensor is behaving beautifully, now I can see clear patterns but do not know how to treat them!

Typically my overnight drops from around 8 to 5, than after breakfast it picks up to about 8 again despite covering the carbs with Novorapid. It remains there until lunch, again covering the carbs, peaks at about 10 and drops back to 8 where it stubbornly sticks for the rest of the day. Same thing for my evening meal. From this I’m guessing that my carb counting and ratio stop the peaks, but although BG is level, it is a bit higher than I wanted. I am presuming this is down to the basal, keeping things nice and steady, so I have just increased from 28 to 30 (still doing one shot at bedtime for now).

I’m probably answering myself here and need to look at splitting the Levemir dose? I think maybe I need to speak to my DSN now rather than waiting until the end of November for my next appointment, but I’d be really interested to hear any other opinions on what has worked?
 
Eternal422 said:
Hello everyone! Initially diagnosed as Type 2 at age 42, but very quickly progressed to insulin and current diabetes healthcare team consider me a late onset Type 1 (GAD antibody tests were inconclusive having been done quite some time after my diabetic symptoms appeared).

After initial care under my local hospital to get me started on a basal-bolus insulin regime I was discharged back to my GP for many years to continue under my own steam and achieved fairly good BG control.

After a house move and a new GP, they referred me to the hospital (now having virtual appointments!) who have got me on the Freestyle Libre 2 as well as getting me to make changes to my insulin dosing to improve my HbA1C which had just crept up outside the “normal” range.

Looking forward to learning more from everyone here and maybe being able to help some people with my experiences!
Click to expand...
Hello and welcome,

My position is the same - type 2 on insulin for many years but my GP practice seem very uninterested in my care. I think they don't have the correct resources in place as my last visit earlier this month ended up with me explaining about dosage and carb counting. This visit didn't end well as I got quite annoyed - I have significant peripheral neuropathy in my feet which they hadn't even logged - seemed to want to bat it back to podiatry. This is a very useful forum and answers many questions.
 
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