Recent LADA diagnosis

[Wendal]

Have to say have found it a very good discussion and really good to get different ideas and try and tailor them for our particular situation.
Thanks for all contributions.

 

[Inka]

I have been concentrating on bolus dose of insulin around meals. Any tips on how to handle unexpected snacks, eg more than 10g piece of cake offered with tea mid afternoon? I can carb count the cake, but if I have had my lunch bolus within 3 hours do I need to take this into account or just give the correct (best guess )insulin for that amount of carb?

Choose your cake portion size, estimate the carbs (always underestimate if not sure), test your blood sugar so you can judge how normal it is for that time of day after lunch, then calculate the insulin dose for the cake. If your blood sugar is lower than you’d expect at that time, I’d knock a bit of the calculated bolus as @helli suggests.

I often eat snacks of more than 10g carbs. Practice makes perfect! You’ll gradually learn how best to handle such snacks and then be more confident at eating them.

 

[Daffodil63]

Hello.
Thank you all for your helpful advice. An update since I was on here!
I have just got a half unit pen for the novorapid, following a helpful appointment with the dietician. However this appointment at the local hospital’s diabetic centre was not the ‘right one’ to access a prescription for a CGM, so my GP practice has now referred me again to the diabetes team. I have just logged onto the NHS app to find that I can now select an appointment. The first telephone appointment is in April 2024.
I wondered whether this is an average waiting time that others had experienced with similar diagnosis? I feel I want to query this, but thought I would find out if this was the ‘norm’ first. If the referral had been sent to the correct team in the first place I would be having an appointment in Jan!
Hopefully half unit pen will help me manage the high and low BG I still get. I find I work to a carb ratio of 1 unit to 30g carb, which was confirmed with the dietician, but I am still finding it hard to factor in the variables, eg after lunch at work, sitting at a desk, BG can stay up at 10 or 13 for 2 to 3 hours. Similar lunch and insulin, at home, pottering around plus a dog walk, BG can go to 4-5 ish and so I would have something to eat to maintain before evening meal. I was going to try to add a half unit to my lunch bolus when at work, and maybe reduce by half if I was to have a more active afternoon? Any thoughts welcome.
Thank You!

 

[Proud to be erratic]

Hello.
Thank you all for your helpful advice. An update since I was on here!
I have just got a half unit pen for the novorapid, following a helpful appointment with the dietician. However this appointment at the local hospital’s diabetic centre was not the ‘right one’ to access a prescription for a CGM, so my GP practice has now referred me again to the diabetes team. I have just logged onto the NHS app to find that I can now select an appointment. The first telephone appointment is in April 2024.
I wondered whether this is an average waiting time that others had experienced with similar diagnosis? I feel I want to query this, but thought I would find out if this was the ‘norm’ first. If the referral had been sent to the correct team in the first place I would be having an appointment in Jan!
Hopefully half unit pen will help me manage the high and low BG I still get. I find I work to a carb ratio of 1 unit to 30g carb, which was confirmed with the dietician, but I am still finding it hard to factor in the variables, eg after lunch at work, sitting at a desk, BG can stay up at 10 or 13 for 2 to 3 hours. Similar lunch and insulin, at home, pottering around plus a dog walk, BG can go to 4-5 ish and so I would have something to eat to maintain before evening meal. I was going to try to add a half unit to my lunch bolus when at work, and maybe reduce by half if I was to have a more active afternoon? Any thoughts welcome.
Thank You!

Hello @Daffodil63,

Pleased you've got the half-unit pen for NR, but I feel angry and disappointed for you about the ridiculous wait for a Hospital Apoointment. As a newly diagnosed T1.5 Lada you should not be made to wait so long for a Hospital referral and I would go straight back to my GP and insist on an Urgent referral. BUT this is also a complete abrogation of responsibility on the part of your GP in the first place and seriously disappointing.

In mid 2022 both the NICE Guidelines for T1 & T2 were revised and in particular authority for prescribing CGMs such as Libre 2 was placed with GPs. A link to the relevant NG17 is attached for you to extract pertinent detail and wave in the face of your GP should you choose to do so.

Overview | Type 1 diabetes in adults: diagnosis and management | Guidance | NICE

www.nice.org.uk

A considerable initiative was raised and pushed through by Dr Partha Kar, who has the lead for Diabetes within NHS England, to get CGM for all T1s who wanted this terrific tech - as a necessary and really quite modest cost in relation to the clear long term benefit to the NHS. NICE accepted the recommendations and pretty promptly published their revised Guidance Note. A certain amount of "hesitation" followed by some Regional Integrated Care Boards (ICBs), who reconciled how they would fund this initiative. That hesitation prevented some GPs from immediately reaching for their prescription pads - but that bureaucracy ought to be long sorted by now. As a T1.5 you are firmly within NG17.

If I were in your situation I would be banging on the Surgery door and politely but robustly asking for my GP to do the right thing and write the script. If there is still a difficulty with your ICB preventing my GP then the Hospital would be my next call, seeking to confirm if there really is an an ICB cause of delay or obstruction. That alone should get the Specialists to instruct the GP to write the script. I haven't read back in this thread to see how you were originally diagnosed; perhaps you already have a named Consultant you could go direct to to fast track your unwelcome obstruction for getting CGM.

Getting to grips with managing your D is a tricky trial and learning process. The first step is to make sure your basal insulin is OK. If that's not right then one's bolus is constantly chasing a moving target.

 

[SB2015]

Hopefully half unit pen will help me manage the high and low BG I still get. I find I work to a carb ratio of 1 unit to 30g carb, which was confirmed with the dietician, but I am still finding it hard to factor in the variables, eg after lunch at work, sitting at a desk, BG can stay up at 10 or 13 for 2 to 3 hours. Similar lunch and insulin, at home, pottering around plus a dog walk, BG can go to 4-5 ish and so I would have something to eat to maintain before evening meal. I was going to try to add a half unit to my lunch bolus when at work, and maybe reduce by half if I was to have a more active afternoon? Any thoughts welcome.
Thank You

You are already thinking along the lines of how to make your own adjustments, and the half unit pen will make this a lot easier. As you have found when at home and active after a meal the glucose gets used up more quickly (the ‘door’ to your muscle is opened by the glucose and the muscle sucks out what it needs from you blood). When at work you may be a lot more static, so the glucose needs a bit more insulin to get it out of the system.
Like everything with our management it is a case of trial and improvement, doing the best that we can in each circumstance and logging things that work for another time, but also recognising that this is not an exact science and there are many factors that will change things a bit.
Keep the questions and the updates coming. Plenty of help available on here.

 

[Daffodil63]

Hello!
Not sure if this is the right thread: just an update
I have now received my first NHS funded freestyle Libre.
I managed to contact the diabetes dieticians at my local hospital rather than waiting for the April appointment, and they were brilliant. I saw a dietician face to face within a couple of weeks, very useful for me. They were unable to refer to the GP for the Libre, but somehow they got me a telephone appointment with the consultant soon after that. I then attended an Abbott course and then the referral was sent to the GP. What a relief it was to see Libre on my repeat prescription! Thank you to my local diabetes team at the hospital.
Dealing with a new diagnosis whist navigating the system has been hard at times. Thanks for your support on here.
Now I have to continue to work out how to keep BG at a good level! Still learning……..

 

[Proud to be erratic]

Hello!
Not sure if this is the right thread: just an update
I have now received my first NHS funded freestyle Libre.
I managed to contact the diabetes dieticians at my local hospital rather than waiting for the April appointment, and they were brilliant. I saw a dietician face to face within a couple of weeks, very useful for me. They were unable to refer to the GP for the Libre, but somehow they got me a telephone appointment with the consultant soon after that. I then attended an Abbott course and then the referral was sent to the GP. What a relief it was to see Libre on my repeat prescription! Thank you to my local diabetes team at the hospital.

Great update news, @Daffodil63, achieved by your steady persistence and initiatives.

Are you aware that there are limitations with the use of CGM? I see you have encountered the Abbott training and that is fine - but not surprisingly Abbott tone down any reference to Libre's possible shortcomings. So by mentioning to you that there are limitations I don't wish to underplay or in any way undermine the terrific use and benefits of CGM - just to help you manage your expectations. I liken the CGM limitations to playing a universal card game with my 10 yr old grandson who is determined to win and will take every opportunity to secretly see the other player's cards and take advantage accordingly! Knowing the limitations helps you win the first and second round in the game! If limitations are news to you I've put in a link below:

CGM limitations and precautions

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors. My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of...

forum.diabetes.org.uk

Dealing with a new diagnosis whist navigating the system has been hard at times. Thanks for your support on here.
Now I have to continue to work out how to keep BG at a good level! Still learning……..

Once you've got used to that initial "wow", for how much your Libre graphs and various reports can be showing you ..... then the anxious "whoa" as you have seen too much too quickly and can alarm yourself about various peaks or troughs ..... then settled back to just doing your best, come what may .....

THEN the challenge really starts! Finding what bolus ratios really work for you, for different meal times and different meal menus, along with how much pre-bolus time works best to get the digested carbs (now glucose) and injected insulin to be arriving at the same time in your blood stream. The adjustments needed for exercise and activity and for how long should adjustments continue after that active period. How much will your own natural insulin be produced tomorrow? How to compensate or offset that? At first it can seem very daunting, but with time the complexity of all the many different influencing factors on your BG become more 2nd nature and with a process of trial and learning you have a decent chance of working much of it out and consequently seeing your BG management markedly improve.

Don't ever expect to get perfection, managing D is not a perfect process. As soon as you've cracked the "rules" your D invents rule variants and leaves you to find out which (unwritten) variant is in play tomorrow for you. From the Abbott tutorials you will have heard about Time in Range (TIR). 70% TIR over 14 days or more is truly very good. A lower % TIR is by no means bad, its just the start. Equally you might get the odd day above 70%. But the route to D "burnout" is by striving for even better TIR - please don't see this as pessimistic, rather as (again) managing your expectations.

Good luck with your learning.