T1 using ALOT of insulin, any advice please

weeezer

Well-Known Member
Messages
272
would really appreciate any advice about my mum. i am T1 (12 yrs) and am waiting until my clinic appt early april to talk about the possibilities of using a pump (have been worried i've got some 'damage' but will bring this up at clinic). mum has been t1 for 37 years, and has been fairly 'uneducated' about it, she was just told the amount of insulin she was told to take and balanced her carbs using the old exchange method. she very rarely eats anything sweet or indeed anything outside of meal times and sticks to the old carb portions she was taught to use (unlike me).

she has always been on the large side, typical apple shape. when she attended the DAFNE equivalent course in her area she was flabbergasted to learn she could reduce carbs further and even miss meals out if she felt like it. this resulted in a drop in her insulin and she also noticeably dropped weight. probably 2 years ago now. also gave her confidence to 'correct' if BS high. she has always had much more insulin than me, round about 26 quick acting with meals, can't remember long acting but 40ish before she went on to levemir and started to split dose.

recently though, she hasn't been able to get on top of her levels, mostly in double figs. she has increased her levemir at night and is now taking 70u and 40u in the morning. still waking up with levels anything from 8-24ish. with meals she takes novorapid anything from 30-50u but is happy to correct - which she's having to do regularly and this STILL doesn't give her stable levels. her consultant just said increase but she keeps upping and still has BS levels all over the place. a 12 is good! this ain't on. consultant arranged an appt with DSN which has come thru for end of april. in the mean time, my mum has been steadily gaining weight. i noticed it in her face and tummy over the weekend (very rounded!) when i saw her. it's really starting to bother her (so it must be bad coz she is the dead opposite to me and doesn't worry about stuff!).

i keep rattling on about a pump maybe being able to help her, she is very willing to put in the work. but she was told she may be able to trial one after doing the DAFNE type course - she followed this up but no-one ever got back to her. this was 2 years ago and she has mentioned it at clinic appts but no-one is ever bothered. it's only now that she is experiencing the insulin probs and erratic levels that i think she should really be pestering them.

im a fine one to talk about chasing up, i've had terrible trouble being under the care of, er, no-one for the last 2 years. i did chase but always hit a wall with docs saying i didn't need to go to a clinic. anyway that's another story! but i know how frustrating it is to get nowhere (which seems a common thread). my mum always assumes there isn't a prob as no-one is knocking on her door but i try to tell her if she isn't shouting, no one hears.

does anyone else think that end of april is too long to wait, that's another 7 weeks of this hell, and potentially even more weight gain. i am very worried for her health (i can barely cope with my own concerns at the mo, this is pushing me to the edge!). she said she would try and get through to the DSNs at her hosp and say she was having all this trouble. i just wanted anyone's advice/experience/thoughts on this matter.

is it only me who thinks this is an unnacceptable situation, is 200+ units of insulin a day a huge amount?

forgot to say she has had all forms of metformin in the past but it really doesn't agree with her so her consultant says don't bother. (!!!!)

many thanks
 

Elc1112

Well-Known Member
Messages
709
That does seem like a lot of insulin. I know I'm very different to your mum but, just as a comparison, I'm on 32 units of levemir and approx 24 of Novorapid each day. It sounds like her requirements have increased significantly and this needs to be addressed.

End of April is far too long. Push to get something sooner. If you can't, see your GP (there may be one of your practice who specialises in diabetes). Don't take no for an answer. She needs to get this sorted ASAP.

Sorry I can't offer any more advice. I hope you get things sorted. She's really lucky to have you there looking out for her :)

Take care and let us know how you get on.

Emma
 

sweetLea

Well-Known Member
Messages
108
There are more and more cases of T1's and T1.5's becoming insulin resistant. I have that problem myself. It is very important that it is addressed by specialists as soon as possible. Go to your GP and ask for a referral. Good luck.
 

weeezer

Well-Known Member
Messages
272
thanks emma & sweetlea

yes, i'm positive my mum is insulin resistant. i've read on here somewhere that this is called 'double diabetes'? she accidentally gave herself 40u of levemir instead of novorapid at lunchtime the other day and panicked. she rang me & i said still take the 40 novo & maybe to reduce that evening's levemir. this resulted in lower numbers the following day, so now she's trialling levemir x40 split over 3 doses (morning, lunch & night)as well as usual novorapid. although i think this is a bit mad, she's convinced it's helping.

she has promised to contact DSN but wants a few days of trying this out so she's got the numbers to relay to DSN. if she hasn't rang them by early nxt week, i'm going to ring them myself and insist someone gets in touch with her.

anyone ever split long acting 3 ways! i know it's quite common to split morning/evening (as i do) but 3????!!!

any other insight into how to combat this severe resistance?
 

sweetLea

Well-Known Member
Messages
108
Low carbing helps me a lot and splitting my long acting. I have heard of 3 way splitting but I've never tried it. Some American friends are doing it with great results. Let us know how that works out please? :)
 

Cenynpedr

Member
Messages
12
Might be completely off the mark, but would suggest you watch horizon on the iplayer. The episode on "the truth about exercise"might be interesting for anyone with insulin resistance.
 

weeezer

Well-Known Member
Messages
272
yep, been meaning to catch that programme...

my mum is fairly inactive, but busy's about in other ways. she has a dog and 3 yrs back was becoming more active with doggy, regularly walking with her etc. she had a fall and broke her ankle - this put her out of action for aaages! it never 'really' healed properly, but she got mobility back albeit reduced. she had a fall whilst on hol in USA last sep and hurt her knee badly and fractured the other ankle! again, it has healed but only up to a certain point. so she finds it difficult to be active.

i'm all for moving more etc but this isn't the answer for my mum.

she's left a msg for DSN to get back to her...hope they see this situation as urgent. i'm looking into the 'profile' of levemir, there are some out there who believe it only to work for 7-8 hours for them before tailing off. if it is supposed to work for 24 hours then why split it at all? why do some people think it works for different lengths of time?
 

iHs

Well-Known Member
Messages
4,595
Hi

I changed from using Lantus once a day to Levemir in 2008. At first I just injected Levemir once a day at night like I did with Lantus and found that although my bg levels were all ok in the morning, by lunchtime they were really high. I then realised that I would need to split and inject Levemir am and pm and by doing so I wouldn't need to inject so much bolus. An added advantage was that I lost a few pounds in weight in switching from Lantus. |On Lantus my weight slowly increased to nearly 9st but on Levemir it went back to 8st 81bs so I was much happier. When I questioned my surgery dsn about Levemir's action, she confirmed that it did need to be injected twice daily for best effect and that although I would need to increase the dose a bit, the amount of hypos should get less severe.
 

Christinelh

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I have become allergic to Levimir and now on Lantus split dose and knew the Levemir was not really working for ages one I have been able to cut the nova rapid
 

goalie

Active Member
Messages
32
Hi, just a few thoughts.
Firstly, it is likely that your mum is becoming resistant to insulin, and the higher the doses get the more likely she is to gain weight and increase resistance.
Has anyone checked her injection sites recently?? A common reason for people with T1 having poor control is that they are continuing injectiong into the same area for years on end.
For many people levemir does not give 24 hr cover and it should be split. A 3 way split may be an option. In this case she might be better on a 50/50 mix with each meal, but this would be for the DSN to discuss with her.
I would certainly push to get an appointment in the next 2-3 weeks, even if it is only a shorter one to get the basics checked.
 

ammacfarlane

Member
Messages
6
I'm quite a newly diagnosed diabetic and I have recently been doing the DAFNE course.

The DSNs told us about levemir having to be split with some patients and that it had helped them loads.

Does your diabetes clinic have a drop-in session your mun can maybe go to? I know at my hospital they have one every Wednesday morning.
 

weeezer

Well-Known Member
Messages
272
thanks every1. mum is finding that having levemir x3 is helping quite a bit. it can't be just because it's an extra 10 units (120 instead of 110). she is waiting for her DSN (only works mon&tu) to get back to her, if she hasn't called today, i'll bloomin well phone her tomorrow! (she was the first friendly face i saw when i was diagnosed nearly 12 years ago so hope i can recall the memory and get her on my side!)