Hello and dire Doctor

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palas

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Type 2
Hi

I'm female, in my late 60s and have been diabetic - type 2 - for about 10 years now. I'm insulin dependent and use Novorapid and Lantus. Am overweight, can't seem to shift it.

I have a diabetic friend in Scotland who has recently been prescribed the Freestyle Libre 2 and really likes it.

I recently went for my annual diabetic review - which was a complete waste of time - as my surgery has no diabetic nurse. I enquired about looking at the possibility of getting a Freestyle Libre 2 monitor as I'm finding my diabetes harder to control. Nurse didn't know, and was unwilling to find out. I'm finding I get hypos at night so am going to bed with my BG higher than I'd like to avoid getting them. Subsequently my morning levels are too high for my liking, so I'm fighting to bring them down through the day. When I first was diagnosed I was told 1 unit of insulin = 10g carbs, but I'm finding now that I need more insulin to bring a high level down, and then run the risk of going low. I was recently telephoned by the doctor for low B12 levels and mentioned it to her, she said I wasn't bad enough to refer on. My last blood result was 64mg which was up on last year's 50 something.

To buy the Freestyle Libre 2 privately is an enormous expense at the moment. In my ignorance I thought that any expense by the NHS in getting better control, would offset the cost of expensive treatment later if I didn't get control.

I don't really know how to proceed now. I'd really like a decent discussion with the diabetes team at the hospital, but have no idea how that might happen.

Any ideas anyone?
 
palas said:
Nurse didn't know, and was unwilling to find out.
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You can see the NICE guidelines here: https://www.nice.org.uk/guidance/ng28/chapter/Recommendations#continuous-glucose-monitoring
palas said:
I don't really know how to proceed now. I'd really like a decent discussion with the diabetes team at the hospital, but have no idea how that might happen.
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I think you need to be referred by your GP, and it sounds (to me, a non-expert) like that ought to happen in your case: you're taking insulin and you're having problems that you can't (without help) address.
 
Hiya

Lantus has a definite peak in its activity at approx 5 hours after you jab it into you - so if eg you jab at 10pm ish and the hypos happen at 3am ish - that would be exactly why.

However - yes I'm very sorry NHS I understand you're very very busy because you've been underfunded and understaffed for far too long - BUT when an insulin doesn't work out for a patient of yours for God's sake allow them to get expert assistance before they collapse and someone has to ring 999 !

By the way - write to the GP surgery and ask them to define 'how bad I have to be' to get a referral.
 
Inka said:
Hi @palas You could try the free trial:

https://www.freestylelibre.co.uk/libre/free-trial.html

How recently have you started having these problems - ie is it just the hot weather causing them or has it being going on for months? What time do you take your Lantus and what time in the night do you have a hypo?
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Well, it's certainly been worse in the recent hot weather, we live in East Anglia. I take my Lantus at roughly 6pm and if I have a hypo it's generally between 2-4 am. It's not every night, not even every week, but once I've had one I'm likely to have another a day or two after.
 
Jenny, thank you for your suggestion that I write to the surgery. I think I'm going to have to lay it on a bit thick! I will indeed do that.

I will try the Freestyle free trial and thank you for the NICE guidelines as well.

I don't think there's anyone at my doctors surgery who understands diabetes now. When the doc recently called me about my B12 levels being low she was banging on about eggs and dairy being good for me. However, my diet is really not bad, and when googling the whole thing afterwards I found out that metformin affects the absorption of B12. She didn't even mention that.

Interesting on the NICE guidelines it says I should be testing 8 x day. Docs only give me 150 strips / month so that's not possible.

Thank you everyone who has replied. Its very demoralising when you eventually get called in and it's a complete waste of time, with the nurse answering every question "I don't know, I'm not a diabetic nurse".
 
palas said:
Well, it's certainly been worse in the recent hot weather, we live in East Anglia. I take my Lantus at roughly 6pm and if I have a hypo it's generally between 2-4 am. It's not every night, not even every week, but once I've had one I'm likely to have another a day or two after.
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I wonder if moving your Lantus to the morning (move the time gradually) might help.

The other option is a twice-daily basal like Levemir. That allows you to vary your morning and evening doses eg 16 a.m, 8 p.m or whatever works for you. That can help reduce nocturnal hypos.
 
palas said:
I don't think there's anyone at my doctors surgery who understands diabetes now.
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I think that's normal. Or rather, it's common enough for them to be able to handle people using the usual Type 2 medications, but when it comes to someone using insulin (even mixed insulin, which you're not using) that's more of a stretch. And they really ought to accept that and just refer you on.
 
If the problem is with absorption of Vitamin B12 then oral B12 either from medication or food is unlikely to do much good so you would need injections, often if very low every couple of days for 2 weeks and then 3 monthly.
It is not just eggs but many veg and foods have B12 which would help if it is not absorption which is a problem.
My other half has B12 injections but was given oral B12 when they were not doing injections because of Covid and I think it helped a bit.
 
palas said:
Interesting on the NICE guidelines it says I should be testing 8 x day. Docs only give me 150 strips / month so that's not possible.
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The NICE guidelines aren’t saying that you should be testing 8 x a day.

They say that if you have been advised you need to test 8x a day to manage your diabetes, then it is reccomended that you are considered for a libre.

Each area can decide their own guidelines though, NICE only gives reccomended guidelines.

If you are only using 150 strips a month then it doesn’t sound like you would meet the guidelines for funded libre.
 
palas said:
Interesting on the NICE guidelines it says I should be testing 8 x day. Docs only give me 150 strips / month so that's not possible.
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I don't think it does (not in NG28 that I can see, anyway): https://www.nice.org.uk/guidance/ng...ns#self-monitoring-of-capillary-blood-glucose

Closest is that you should have a structured assessment of your testing which should include "the quality and frequency of testing". (There is guidance for Type 1. I'm guessing because people with Type 2 vary so much in how much testing is useful they didn't think it was wise to try and set it down. Also testing has sometimes been restricted for people with Type 1, and they felt it important to warn against that.)
 
Welcome to the forum @palas

Hope you find the free trial of Libre helpful.

It does sound a little as if you’ve been left a little in the lurch without much detailed support and information for your diabetes management :(

I wonder if perhaps you might be able to get some hints and clues from one of the freely available T1 courses in insulin therapy such as BERTIE or DAFNE. They aren’t aimed at T2, but I’d imagine many of the overall principles and self-adjustment techniques would still apply. Insulin therapy does seem to be a matter of “start where you are… and then experiment to adjust things so that they work better”. And all sorts of factors can influence how well, or otherwise, your doses work out.

Not least because diabetes is a bit of a moveable feast, and your insulin doses are likely to need to rise and fall through the year as things like weather, ambient temperature, levels of activity, stress and all manner of other variables ebb and flow.

Good luck, and keep firing away with any questions 🙂
 
Thank you everyone. I've printed off some of the NICE guideline and think when I talk to a diabetes nurse later today I'll mention Mike's suggestion of some type of insulin course because I've really no idea - or have forgotten - how wide the variables are. Will let you all know how I get on.
 
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