Type 1 Idiopathic Type 1??

Hi there!! I was diagnosed with type 1 diabetes when I was 8 in 2007. I'm 18 now and ever since I've been on regular insulin injections and treating it like normal type 1. I've always had slightly higher HBA1Cs (my last one was 8.9!!) and sometimes struggle controlling my levels. Recently I've been asking my parents more about idiopathic diabetes, as I was told upon diagnosis I was idiopathic. Since I was so young I never questioned it but now I'm wondering what it all means?? The internet isn't much help and from what it describes, I don't seem to fit the bill! They say it's got a stronger genetic component and more prevalent amongst people of Asian or African decent. I'm British and have no previous family history of the disease either. Is it just because I've been the first to actually display the disease?? It also seems to mention frequent episodes of ketones but I don't seem to have ever had trouble with this. Is there anyone out there who's experienced the same thing and can over any advice or information??

As far as I'm aware I am antibody negative although I'm going to ask my doctor again on Monday to make sure. I always carb count when I eat, and measure everything at home and try to judge carbs when I'm out. At the moment my doctor has me on 40g of carb at breakfast, 50g at lunch and 40g again at dinner. Supposedly he says this is fine for my age (although sometimes it seems like a lot with certain carbs). I'm on humalog 3x a day plus lantus at night (52 units which I've always thought is high but never been able to bring it down). I'm honestly not sure what to do about control, I've always thought I've been controlling well but then the time comes for my HBA1C and it's always higher than expected!! I think the lowest it's been since diagnosis is 8.1

Daibell said:

From what you say you are not carb-counting and the GP should have taught you this. Carb-counting when on insulin means counting the carbs actually in your meal and adjusting the Bolus (Humalog) to suit for each meal typically using a ratio on 1 shot per 10gm of carbs. Having fixed Bolus doses is not the best way to be using Basal/Bolus. You need to check your Basal balance which I won't explain here but it needs to be balanced so your liver's natural glucose output is balanced by the Basal insulin. You doctor seems to be pretty useless so you may want to ask to be referred to the diabetes clinic.

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Yes as you've explained this doesn't sound like what I've been taught! I've always had a set Bolus and adjust that based on my levels (e.g if I'm 8 or below I do regular, and every 4 points above 8, I add an extra unit. So basically if my normal is 12 but my blood sugars are 13 I would do 13.) I do also adjust according to how much I've eaten, if I think there are extra carbs I'll add an extra 1 or 2 units. Maybe this is the wrong way to go about it but I've been doing it for the past 10 years on the advice of my doctor. Unfortunately growing up in Hong Kong there is no diabetes clinic, only the paediatrician I was allocated to upon diagnosis. I'm moving to the UK next month however and will definitely meet with a gp and ask for a referral to a diabetes clinic and maybe ask about adjusting my current treatment. Thanks for the advice!

catapillar said:

How often do you test? What do your blood sugars look like when you do test?

A hba1c of 8.9 is equivalent to an average blood sugar of 11.3. You need to test to find out when those highs are happening. Once you know when they are happening you can figure out what you need to do to avoid them. If they are happening over night/early morning you might need to basal test and adjust your basal doseage, if they are happening post prandially you might need to review your insulin to carb ratio and look at pre bolusing.

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Being on the libre I test all the time whenever I walk past my scanner so around 10-15 times a day. Unfortunately after reading more on these forums I think I've been doing everything wrong from the beginning. 11.3 as you mentioned wouldn't be considered high in my opinion. I've sort of assumed anything below 15 is alright and have adjusted to this lifestyle. I never really correct with extra insulin unless I'm above 17 or so, and this correction has only really begun since I've got the libre as I check more often. I do notice I tend to go higher straight after meals so maybe it's time I adjust more. Or maybe even a pump would suit me better. I'll definitely be having a long chat with my doctor next week!
Thanks again for your help!

novorapidboi26 said:

When you get back to the UK you can start the education process......

There are a lot of faults with your approach as you have been shown here...

dose adjustment can be a lot more accurate and fine tuned...

how long have you been on the Libre? what has it shown you so far...?

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Yes I'm looking forwards to meeting with a new team and hopefully adjusting my method. I've been on the libre now since October last year, if I'm honest I'm still not sure what all the graphs mean but I know that my averages are quite high so I've definitely got to do something, just angry that as a child through to a teenager (I've only just turned 18) my doctor seems to not really care whether or not my bloods are at a good level!

BeccyB said:

I wouldn't worry about a pump yet Tasha, they would want to see you carb counting and adjusting doses for a while before going down that road anyway. I would ask about the DAFNE course once you get over here as it will teach you how to adjust your insulin to your needs. There is an online course somewhere too but I'm afraid I can't remember where - hopefully someone will add the information here for you.

Unfortunately you haven't had the right information previously and you will need to adjust to 15 not being ok! it can be hard at times but is worth the effort in the long term as you can prevent complications in the future.

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Thanks a lot BeccyB, I'll look into the DAFNE course and see what I can do with my current doctor. Here's to hoping things start to get back on track!