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Hello All

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Nedrab

Nedrab

New Member
Relationship to Diabetes
Type 1
Hi, my name's Rob.

Obviously, new to the forum, following a suggestion by my local nurse.

I was diagnosed with Type 1 Diabetes on 17th January 2008 (29 years old) - unluckily, this is one of the few traits I've received from my dad's side of the family.

One good thing was that this got me over my fear of needles, and enabled me to get a few tattoos done!
 
Hi Rob and welcome

Well done on conquering your fear of needles.... not much choice though really when the alternative is being dead, but still I imagine it must have been challenging.
How is your management these days? Are you on MDI or do you have a pump? Have you got Freestyle Libre? There is so much great tech to help us manage our condition these days, we are pretty lucky when you think of how things were 40years ago and even more so 100yrs ago when there was no insulin.
 
Thank you rebrascora (or Barbara).
It wasn't challenging at all when the choice was to stay in hospital until I could do it :D
Unfortunately, my management is part of the reason for the nurse recommending I join the forum. I inject 5 times a day (Levemir x 2, Novorapid x 3), with Metformin (2 pills twice a day), but my readings and HbA1c have started to become an issue - latest HbA1c was 78 😱
Having seen my dad's treatment since early to mid 1990's, I'm glad(?) to have been diagnosed now rather than back then!
 
Hi again Rob
We are on the same insulins. I really like the split dose Levemir as I need much less insulin during the night than the day.

I am curious about the Metformin.... is that a new addition to your management? Generally that is a Type 2 medication as it helps with insulin resistance.... do you think you are becoming less sensitive to insulin ie have you been needing to use larger doses? This can be improved by increased activity, eating less carbs and weight loss.... any of those applicable?
Have you had a DAFNE (Dose Adjustment for Normal Eating) course or local equivalent? Do you adjust your doses according to what you eat and do you eat a lot of carbs?

Have they mentioned the possibility of a Freestyle Libre.... this is a sensor which is attached to your arm for a fortnight and you scan it to get a reading and you can scan as often as you like but it collects data every few minutes even when not scanning, providing you with much more information about what is happening with your BG levels between finger pricks.... it is a real game changer in seeing how food spikes your levels and what is happening overnight whilst you are asleep and enables you to tweak your insulin regime to smooth out the spikes from food and get your basal doses as close to perfect as possible. I am currently self funding it but will hopefully be getting it on prescription soon as it is pretty expensive (approx. £100 a month) but worth every penny for the info it provides. Most people who use it here on the forum would not give it up without a serious fight because it is a really great bit of kit!
 
No, I've been on Metformin for a few years now, as I'm really not one for exercise - used to do a lot of running and football when I was younger and lost interest - and they figured it would help with my readings.
DAFNE is discussed at the meetings with my specialist, but isn't something I'm very enthusiastic about.
I do adjust my Novorapid injections, but wouldn't say I eat a lot of carbs, although I do have a big appetite.
Part of the reason my nurse recommended joining the site was to seek advice from those that have used pumps and the Freestyle Libre - I'll be polite and leave it a bit before jumping in with the question! I know a couple of people that used pumps and have experienced severe weight gain (with healthcare professionals being able to know immediately that they used pumps from their stomach shape) and my dad is currently on the Libre. Unfortunately, I can't afford to self fund.
 
The education (such as DAFNE) is worth it, I think. (Some people found it annoying because they found it aimed more at beginners, and I can see that might be an issue. I was lucky in that the one I went on included only people who'd been diabetic for a long time.)

Libre is prescribed to a little over 30% of all people with Type 1 so it's worth trying to see if you can get it prescribed. (I think it's expected that the 30% is just the beginning; the experience seems to be that it's proving to be effective.)

I suspect pumps and weight gain is all about what you end up eating, so if you can arrange that the pump gives you just enough insulin to cover what you're currently eating, you'll gain weight only if you're gaining weight now. I can imagine if the pump's injecting just a little bit too much you might end up snacking to avoid hypos so it could produce weight gain.
 
If you are resistant to the idea of DAFNE then you probably won't gain much from it. There was a lady on my course who had been diabetic for 50 years and it helped to solve her problems in that it identified the cause of her frequent and sometimes severe night time hypos and gave her a pathway to getting a pump which she had previously been concerned about/resistant too, but with more information she was convinced. Another guy had 15 years experience with diabetes but was resistant to the idea of sharing info and as a result I am not sure he gained much from it.

Pumps should not cause weight gain in the same way that insulin does not cause weight gain. It is the food people eat which does that. Not adjusting the pump correctly must surely be the reason why people put on weight with a pump and end up eating to their insulin rather than using insulin to cover the food they eat.... or perhaps it is just so much easier to bolus for snacks etc that they get undisciplined with their diet once they have a pump..

Do you have any thoughts on why your HbA1c is increasing? Are you needing progressively more insulin?

Exercise doesn't have to be something strenuous... a brisk daily walk is as good as anything and within most people's capability.
 
Hello and welcome @Nedrab glad you joined us🙂

When I changed to a pump the total amount of insulin I was using dropped by about a third and my control started to improve. I found only using quick acting insulin through a pump and being able to use tiny dose increments to sort out issues really helped with my control especially through the night when I struggled with hypos and rebound highs.

Do you know when your higher results are happening so you can try and target what’s going on? Have you done a basal test recently to see if your background insulin is keeping you stable without food. That’s the place to start as once that’s ok then the rest - carb ratios/ boluses/corrections -all work more predictably- as much as T1 ever does stuff predictably! Ask about a Libre trial/prescription - having 24hr glucose data really is such an eye opener and helps you target the right areas.

I’m not a needle fan but I’d rather have a blood test than brave having a tattoo!
 
rebrascora said:
Do you have any thoughts on why your HbA1c is increasing? Are you needing progressively more insulin?
Click to expand...
No, I have no idea, as I don't think I'm doing anything different to previous. Clearly something is wrong, but I'm at a loss to explain it.
 
Thanks for the welcome @Flower and thank you for the comments about the pump. Overall, I think my nurse was happy with the early morning and lunchtime readings, so the problem is the dinner time and evening results.
I haven't done a basal test, so will see about that, and move on from there.
Looks more and more like I might have to self fund a Libre, at least short term, which will impact my saving efforts a bit. I'll let my nurse fight on my behalf!
 
Nedrab - are you aware that not only your bolus insulin (the Novorapid) needs to be adjusted up and down for the simple reason that you or something else changes and therefore your requirement for insulin does too. eg in hot weather I always need less insulin.

Have you got full instructions for carrying out a full 24hr basal test (which takes several days actually doing a different time block each time), and what about your insulin:carb ratio' is that the same for every meal or does it differ morning noon and night and also your correction rates? Do you know what they are?

Re basal testing - here's some details for that. https://www.diabetes-support.org.uk/info/?page_id=238
 
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