Newbie.

[SuzannaHarriet]

Hi everyone,

I was officially diagnosed at a T2 in July last year but a quick flick through my medical notes show that I've been diabetic for at least 5 years and it just wasn't flagged up.

Since July I've tried metformin, gliclazide, linagliptin and sitagliptin - turns out I'm allergic to gliptins. Before metformin my blood sugars were around 28mmol, with metformin nothing happened and with metformin 2g a day and gliclazide 30mg MR they went to around 20mmol on average.

I started on Novomix30 3 weeks ago and my daily averages are now about 15mmol with 18 units twice a day.

The only time my levels are below 10 is when I skip lunch and I've never had a morning glucose level of below 12.5, the average is 16.

My usual breakfast is either gluten free weetabix or scrambled egg on gluten free bread. I'm awful and tend to skip lunch or just eat something like a babybel - sometimes this puts my levels below 10 and sometimes it doesn't. Dinner is usually a family friendly meal such as lasagne, curry, or chicken something or other. My eldest is gluten and dairy free so I don't tend to have healthier grains in the house as he can't eat them.

In my opinion my diet isn't horrific, but it's probably too high in carbs.

I'm currently awaiting a referral for secondary care and I've just changed GP as my old GP was reluctant to do anything. He wasn't bothered about my levels being above 20mmol and didn't want to put me on insulin because I was 'still young and had a normal diet'. So hopefully a new GP and consultant will help get me within a target range and get me on the road to real management!

I thinks that's about it for me, so hi again!!

 

[KARNAK]

In my opinion my diet isn't horrific, but it's probably too high in carbs.

You got that one right @SuzannaHarriet, welcome to the forum. Not horrific but a lot of unwanted carbs in your post, e.g. cereal and milk, pasta, bread, probably potatoes etc. You just need to check you BS before you have your meal and a couple hours after to see which food spikes your readings. It doesn't mean you have to give up all foods just reduce the amount of carbs a food diary will help that way you can learn which foods spike your BS too much. Other members will be along to advise you on links and reading matter to help you enable your control of your Diabetes.

 

[Ralph-YK]

Welcome to the forum Suzanna. Has either GP practice provided a meter or strips for you to self test?
Do you test before and (1 - 2 hours) after eating? This will tell you what affect what you're eating has on your BG. Keep a food diary, along with a record of your levels. Hopefully after a couple of weeks you'll start to see a patter.

 

[SuzannaHarriet]

Thanks for the responses!
I have been given an AccuChek Performa nano which I've been using since November. I'm testing before meals, 2 hours after and before bed at the moment.

I have yet to find a pattern, on Monday I had weetabix and milk and went from 15.8 to 20.2 with 16units, yet on Wednesday I went from 12.7 to 15.4 with 16units. It's been very up and down since being diagnosed, eating the same thing doesn't seem to give the same results - I imagine this is normal and may just be my body learning to adjust and naturally could be effected by food the day before etc.

I'm seeing a new diabetes nurse on Monday with the hope of a dietician referral and a new dose adjustment 🙂

I know it's all still new and changes take time but I'm just so frustrated by the numbers!

 

[Ralph-YK]

My understanding is that it can vary from day to day. I've heard tempreature can have a effect, so summer can be different to winter or to the two weeks you spend in Majorka on holiday.
Just to check, is Novomix30 insulin? There are others on here who know more about taking insulin than me. My understanding is at the beginning you've to eat for the insulin you are taking, and you're does will be adjust when you see the nurse. This is one thing your diary can help in. It should be adjusted according to how much your figures come down, while trying to avoid causing hypos.

 

[trophywench]

You need to be referred to see a consultant - it's much more likely to be so like Type 1 it may as well be T1 in the first place. Did you ever have any tests to determine which type it might be? I'm thinking LADA …….

You're only 26 now, 21 when diagnosed so prime time to get T1, which can start at any age between birth and death presumably, since we've heard of 70 yo's being first diagnosed. They used to thing you had to be a child to have it but that's absolutely untrue.

Mixed insulin of any kind is not for anyone (Type 1 or 2) who is not able to re-arrange their lives to suit how the insulin demands - because it is a mix of both slow release (background) and fast release (mealtime) insulins you should only eat a) enough carbohydrate to match how much fast acting you've injected, not more and no less and b) at the right time to match that insulin - not an hour before nor an hour later, otherwise your blood glucose will be greater or lower that the level-ish 4 - 7 (ie normal readings) you are attempting to replicate for as much time out of every single day of your life as you can achieve to try and avoid complications.

No doctor or nurse actually treats anyone's diabetes unless the patient is comatose in hospital. No - each person needs to treat it themselves - so an expert is needed to advise us. No GP is an expert in any medical problem - his specialism is at being a medical jack of all trades. Jack of all trades = Master of none, so he simply isn't an expert with anything. He certainly knows a lot more than we do initially - but an awful lot of us who decide to better educate ourselves, very soon know a lot more about it than he seems to!

It was a breath of fresh air when they developed the newer insulins and gradually changed all T1s over to them - at last we COULD hope to lead more normal lives and not be forced to have such a rigid lifestyle.

 

[Drummer]

My jaw dropped at the food choices you were making until I reread and realised that you are eating the carbs to counteract the insulin you have been prescribed.
Usually a type two would just reduce the carbs and the lucky ones then see normal blood glucose.
I don't understand about it being bad to skip lunch - I only eat early and late, and sometimes I hardly eat at all at one or the other mealtimes if I am busy. As your numbers are still high you might try carefully reducing the amount of carbs you are consuming until you see more normal numbers.

 

[SuzannaHarriet]

Just to check, is Novomix30 insulin?

It is indeed 🙂 unfortunately diet and a combination of oral medication wasn't enough to counteract the 20+mmol levels.

Did you ever have any tests to determine which type it might be?

No, one GP queried type 1/LADA but another decided because I was overweight that it had to be type 2 and so said I didn't need to have any tests. However he didn't take into account the fact that I have PCOS and endometriosis and that those hormones mess with my weight. (Naturally, I am aware that I need to lose weight though!) With regards to the novomix, I do struggle, I'm a full time student and a mum of 2 young boys and so my meal times (and insulin times) vary. My GP, again, didn't seem bothered that I wasn't taking it to schedule and just upped my dose until I moved surgery, I have yet to see if this GP will be more helpful but I am definitely going to fight for a referral.

My jaw dropped at the food choices you were making until I reread and realised that you are eating the carbs to counteract the insulin you have been prescribed.
I don't understand about it being bad to skip lunch.

To be honest, even with the purpose to counteract the insulin my carbs are still far too high. I'm looking into low carb, family friendly meals and I tend to not eat the pasta etc in main meals. With regards to skipping meals, my GP said because the insulin is twice daily and a mix of long and short-acting, that I need to eat 3 meals a day to avoid hypos. It's been horrible because I'm really not a lunch person. Honestly, the insulin I've been given just isn't right for my lifestyle and I'm hoping my new GP will listen when I tell them that.

 

[Flower]

Hello @SuzannaHarriet and welcome🙂

How did your diagnosis come about? Were you experiencing symptoms of thirst, tiredness, etc?

I agree with trophywench about it sounding more like LADA -Latent autoimmune diabetes in adults - a slower progression onset of autoimmune diabetes. I did think LADA/Type 1 when I read your post.
You've tried a lot of the T2 medication which didn't help your high levels and can only work efficiently if the beta cells in your pancreas are still producing sufficient insulin. Mixed insulin is better than relying on a dwindling endogenous insulin supply but as you're finding it is very rigid and requires feeding with the right amount of carbs at the right times or you go hypo/hyper. Basal/bolus is a more flexible approach , basal covers your background insulin needs and bolus covers the carbs eaten at a meal - you carb count to match the insulin to the carbs eaten.

Keep a close eye on your readings and how you are feeling and ask your new gp for a referral to a hospital diabetes clinic asap where they will be able to help you and also get you on to a more modern and flexible insulin regime that fits in with your busy life if that is the diagnosis.

Numerous people on the forum have had similar problems to yourself with high levels come what may and a gp adamant that they are Type x and unwilling to refer or to explore other options. Keep at them and I hope things improve for you soon.

 

[Ralph-YK]

so my meal times (and insulin times) vary.

I wonder if this is contributing to the problem.

eating the same thing doesn't seem to give the same results

The varying schedule might very be contributing to this.

Metformin, and possibly gliclazide, are only used in treading T2. From what I've read on the forum, they're not much use for a type one. However, you need to get the doctors to check this out before cutting them out.

 

[TheClockworkDodo]

Hello @SuzannaHarriet and welcome 🙂

Just to say I agree with Jenny and Flower, the high readings you've been getting and the fact that oral meds had pretty much no effect on you do suggest you might have LADA (effectively type 1, just slow-onset type 1). Being overweight does not mean it has to be type 2, that's completely incorrect (and I think you are very wise to be moving to a new surgery, as the quality of care at your old one sounds awful). Please try to get yourself referred to a hospital diabetes consultant, because it sounds as though you need more help than even a good GP could provide. And then if I were you I'd ask the consultant if you can have a GAD antibody test and/or a C-Peptide test, which are the tests for type 1, and also if they will put you onto a basal/bolus (aka multiple daily injections, or MDI) regime, as that is so much more flexible and will suit your lifestyle much better. It's the normal regime for type 1s.

Good luck, and do let us know how you get on - and if you have any questions, please do ask, there's sure to be someone here who can help.

 

[SuzannaHarriet]

Hey everyone,
I'm so sorry it's taken me so long to update. It's my exam period at uni and I went off the grid!
In the last two weeks I've been switched onto novorapid and levemir and then from levemir onto abasaglar. I'm on 6u of novorapid and 24u of abasaglar, increasing by 2u until my before food readings are between 4-7. I'm currently at 12mmol so got a little way to go!
I've got a blood test next week to determine what type of diabetes I actually have so hopefully I shall have answers soon!

 

[Flower]

Hello @SuzannaHarriet good to hear from you 🙂

I'm glad you've had some useful help and been put on a flexible insulin regime. Hopefully the blood test will give you a definite diagnosis and I hope you're feeling a lot better with more normal levels.🙂

 

[mikeyB]

For those readers unfamiliar with abasaglar, it’s a biosimilar product to glargine, Lantus, that’s been created as a cheaper alternative now that Lantus is out of patent. Lantus users may find that local CCGs order a switch.

Thought this sort of thing would happen when patents ran out. I think Lancashire CCGs are winding up to impose this. It’s not cheap rubbish, it’s made by Eli Lilly, and it is directly equivalent, so don’t worry if you are switched. Comes only in quickpens, not vials or cartridges, from what I can see. Just use the same dose.

The problems will arise when GPs try to switch us split dose Levemir users, and believe me, they will. Resist.

 

[TheClockworkDodo]

The problems will arise when GPs try to switch us split dose Levemir users, and believe me, they will. Resist.

Or those of us on 4.5 units of basal, for whom quickpens with only whole units are useless!

However, I'm glad you're getting better treatment now, @SuzannaHarriet - and that they've ordered the tests to find out which type of diabetes you have. It's good that your levels are going down, and also that they're going down slowly - that's better for your system than having them drop too rapidly 🙂

PS good luck with the exam results!

 

[SB2015]

I hope that the exams have gone well and that the tests help to sort out your appropriate treatment.