Hello from a Newbie

[Ruby Red]

So glad you were able to speak to a diabetes nurse and get a blood glucose meter, @Ruby Red - it's awful that your GP didn't organise this for you straight away when you first went to see them.

Blood sugar should be between 4 to 8, so 24.5 is very high indeed, and needs to be treated right away. Talk to the nurse about it in the morning, but if you feel worse in the meanwhile, please go in to A&E asap. I know A&E is horrible, but it really is dangerous for you to have such high blood sugar, and having any ketones at all is not good either. Ketones mean your body is unable to digest your food properly so it's breaking down your body tissue instead: https://www.diabetes.org.uk/guide-to-diabetes/complications/diabetic_ketoacidosis

At the moment your ketones aren't very high, but if they get higher (which they will if your diabetes remains untreated) you will be going to A&E in an ambulance and staying there for some time, being really seriously ill, so it's much better to go in now. Diabetes ketoacidosis is life-threatening, you really can't wait around. I know because I've been there and done that, and I ended up spending a week in hospital on an insulin pump - if I hadn't gone in when I did I might not have survived.

Having said all that, once you get some insulin (or other meds if you turn out to be type 2, but you sound much more like a type 1 to me) you will feel fantastic and there is no need for diabetes to have any major effect on your future life, so please try not to worry.

Please let us know how you get on, I for one am quite worried about you.

Thank you for the reply Juliet. It is all very scary. Especially how all of this has come on so quickly. I'm usually very well and rarely go to the Dr's!
I've just tested my blood again (before bed) and it's showing at 20.6 so it's still not good but down slightly.
Will be glad to speak to the nurse tomorrow.
Thanks again for the info
Ruby

 

[Northerner]

Thank you for the reply Juliet. It is all very scary. Especially how all of this has come on so quickly. I'm usually very well and rarely go to the Dr's!
I've just tested my blood again (before bed) and it's showing at 20.6 so it's still not good but down slightly.
Will be glad to speak to the nurse tomorrow.
Thanks again for the info
Ruby

Hi Ruby, good to hear that things are at least moving now. Please do follow the nurse's advice if she advises A&E - you may feel OK every now and then, but if this is Type 1 onset then things can go downhill VERY quickly - don't wait for a medical emergency to persuade you to go, the sooner you get proper treatment the less potential damage you will be doing. I was like you - rarely needed to see a doctor and was due to run a marathon the week I was diagnosed - I went from that to DKA, potential coma and potential major organ failure in less than a week Ketones can fluctuate, just as blood sugars can, but in your current situation your blood sugar levels are remaining very high indicating a severe shortage of insulin which you are unable to correct, so ketone levels above 0.6 are an indication that your body is not managing to clear them from your blood properly.

Let us know how you go on.

 

[TheClockworkDodo]

It is scary at first, Ruby, but only in the short term, don't worry. Once you get treated with insulin and learn how to manage it, in the long term it just becomes a minor irritation. But the sooner you get help, the better, as Northerner says.

I hope by the time you see this you'll have spoken to the nurse and she'll have sorted you out with some insulin! If she's a diabetes specialist nurse, ask her for her phone number and/or email address - there's a lot to learn in the first week or so and you will have lots of questions.

 

[Ruby Red]

Hi all I have been started on Gliclazide 80mg tablets today. So far my blood sugar seems to be coming down tonight they are 14.7 still having daily calls from the diabetes nurse. Fingers crossed they keep coming down

I am slightly confused tho as the nurse has told me to make sure I'm eating enough and to 'fill up on carbs' if I get hungry.

I thought I was supposed to monitor carbs?

I'm confused.....🙄

 

[HOBIE]

Hi Everyone,

I am newly registered here.

I am awaiting confirmation of the type of diabetes that I have, although it is thought that I will most likely be Type 1 due to a strong family history.
I am feeling pretty dreadful at the moment, I have an incredible thirst which I cannot seem to cure no matter how much water I drink!
I would like to ask for suggestions of anything that helps you when you have a thirst as I am really struggling!
Thanks for reading
Ruby

Welcome Ruby 🙂

 

[Northerner]

Hi all I have been started on Gliclazide 80mg tablets today. So far my blood sugar seems to be coming down tonight they are 14.7 still having daily calls from the diabetes nurse. Fingers crossed they keep coming down

I am slightly confused tho as the nurse has told me to make sure I'm eating enough and to 'fill up on carbs' if I get hungry.

I thought I was supposed to monitor carbs?

I'm confused.....🙄

Oh dear I'm afraid this sounds like a classic misdiagnosis route Gliclizide is a medication that stimulates your pancreas to produce more insulin, and this may be why the nurse was recommending more carbs - she might be worried that your levels could drop too low. Did she make any recommendations about testing and the possibility of hypos (a blood sugar reading below 4.0 mmol/l)? You may feel some hypo symptoms when you are above this level as your body will have got used to you being much higher - this won't pose a danger if you are above 4.0, but below 4.0 you must have some fast-acting sugar, like a jelly baby or two or glucose tablets (15g carbs is the normal recommended amount, then another 15g if levels are still low after 15 minutes).

The gliclizide may help for a while, but I think you will eventually need insulin as everything you have said so far would indicate a Type 1 diagnosis. Other members have been down this route and will be able to share their experiences (@Robin, @stephknits are two I can think of). I'm disappointed that the nurse did not just put you on insulin straightaway. Have any further tests been ordered to determine the type of diabetes, or are they still presuming Type 2?

 

[Robin]

Hello Ruby, sorry you're having problems getting your treatment sorted out. As Northerner said, I was assumed to be Type 2 (because of my age at diagnosis, 51) but had similar glucose levels to yours. I was started on Gliclazide, and my levels did drop a bit, for a while, but only into the teens instead of the twenties, even though I wasn't eating much carb ( ironically, I'd been on a low carb diet, but found I was starting to snack on ever increasing amounts of cheese, nuts, etc, and still losing weight) I reported to my diabetes team that my levels were still high, despite eating hardly any carbs, and they added a background (basal) insulin, which again helped a bit, but at the same time, they did a GAD antibody test, which was positive, and proved I was type 1. When they got the results, they sat on them for three months until my next appointment! Then they finally took me off Gliclazide and started me on a full insulin regime and I've never looked back. It did take nearly a year of shuttling back and forth to the hospital to get to that stage, though. With hindsight, I should have pushed harder, but I hadn't found the forum then, and I'd no idea that my levels were so dangerously high.

 

[stephknits]

Hi Ruby, as Northerner says, mid diagnosis is quite common. It is hard to push the nurse/doctor etc to do tests and sort out insulin, especially when you are feeling so rubbish. It was only by being on this site and realising through the stories of others and the kind encouragement on here that having blood sugars constantly in the teens and 20s despite Gliclizide, max Metformin and a very low carb diet that this was not right. I waited 10 months for re diagnosis during which time I ate as few carbs as possible and lost 2and a half stone - which when starting at 9 and a half was a lot for me. I eventually ended up in hospital with high ketones, but still sent home to wait for an appointment a few weeks later. Do try to get a test to rule out (or in) Type 1. Let us know how you are getting on.

 

[Ruby Red]

Hello all, you will be sick of hearing from me soon! Thank you all for your comments they are useful. I don't think these meds are making much difference to be honest. I was told to take 2 tablets yesterday, 3 today and then 4 from tomorrow onwards.

My before evening meal reading yesterday was 14.7. My before bed reading was then 24.3. I ate my tea, sausage and mash with steamed veg, but then had a drink of squash and an orange! I can only think I did wrong with squash but I am struggling knowing what else to drink other than water which I drink loads of.

My reading first thing this morning was 19.8 and just now before tea 18.3.

I'm feeling a little disheartened to say the least especially as I've only had porridge for breakfast and cottage pie and veg at lunch and I've only drank water

Other half wants to order pizza for tea and I'm so tempted to have a slice! Instead of my home made chicken soup!

Haven't managed to speak with the diabetes nurse today at all as she's been in clinic.

Diabetes really sucks!!

 

[Northerner]

Sorry to hear things haven't really improved Ruby Red You must persist with the nurse, and if she isn't available then tell them you MUST speak to someone. And if you still can't get any joy, then I'm afraid A&E may be your only option As we've said many times, this is potentially very serious and needs dealing with as soon as possible. If your pancreas can't make any more insulin, which appears to be the case, then no amount of gliclizide will help reduce your levels Try and avoid carbs as much as you can until you can get this sorted out.

Good luck! And please don't apologise about posting - that's why we're here! 🙂

 

[Martin Canty]

My before evening meal reading yesterday was 14.7. My before bed reading was then 24.3. I ate my tea, sausage and mash with steamed veg, but then had a drink of squash and an orange! I can only think I did wrong with squash but I am struggling knowing what else to drink other than water which I drink loads of.

A lot of us have issues with potatoes, particularly the ones more suited to mash or baking... Add to that the squash & orange, perhaps repeating this meal without the mash, squash & orange & compare the results

 

[Ruby Red]

Thank you for the reply Northerner I've left a few messages with the diabetes team so hoping I'll hear first thing in the morning. The only thing the tablets do seem to help with is the keytones which have gone from 1.2 on Tuesday to 0.7 today.

Martin - any suggestions on what to eat instead of potatoes? Do you avoid them altogether and just have meat and veg?

 

[Martin Canty]

Do you avoid them altogether and just have meat and veg?

That's pretty much what I do.....

I haven't given this advice for a while so here it goes....
Cut or reduce carb sources such are Bread, Pasta, Rice, cereals & starchy vegetables (such as potatoes) replacing them instead with green leafy vegetables.

My plan for tonight (may changes as my wife may cook so all bets are off) is pork chops with cauliflower & broccoli.

 

[New-journey]

Thank you for the reply Northerner I've left a few messages with the diabetes team so hoping I'll hear first thing in the morning. The only thing the tablets do seem to help with is the keytones which have gone from 1.2 on Tuesday to 0.7 today.

Martin - any suggestions on what to eat instead of potatoes? Do you avoid them altogether and just have meat and veg?

This must aIl must all be a huge shock for you, it does sound like type one. Your life will be very different after you have been given the insulin you need which hopefully is tomorrow. Until then eating no carbs will help but whatever you eat, you will still be high. Taking insulin is essential. Once you have insulin you will be able to eat some carbs, and your numbers will come down, please do take Northerner's and the other's advice and get emergency help tomorrow. Good luck with everything and do let us know how you are.

 

[Ruby Red]

That's pretty much what I do.....

I haven't given this advice for a while so here it goes....
Cut or reduce carb sources such are Bread, Pasta, Rice, cereals & starchy vegetables (such as potatoes) replacing them instead with green leafy vegetables.

My plan for tonight (may changes as my wife may cook so all bets are off) is pork chops with cauliflower & broccoli.

Thank you. I love veg, but sausage and mash is a weakness!

 

[Ruby Red]

This must aIl must all be a huge shock for you, it does sound like type one. Your life will be very different after you have been given the insulin you need which hopefully is tomorrow. Until then eating no carbs will help but whatever you eat, you will still be high. Taking insulin is essential. Once you have insulin you will be able to eat some carbs, and your numbers will come down, please do take Northerner's and the other's advice and get emergency help tomorrow. Good luck with everything and do let us know how you are.

Thank you New Journey. Yes a shock, more than I expected I think. One of those things that although it is in my family, I never thought it would be me next! I have always watched my diet, not least of all because as a wheelchair user I have always had to watch my weight. I
Still, I am determined to get back on top of the game...eventually 🙂

 

[Northerner]

Thank you New Journey. Yes a shock, more than I expected I think. One of those things that although it is in my family, I never thought it would be me next! I have always watched my diet, not least of all because as a wheelchair user I have always had to watch my weight. I
Still, I am determined to get back on top of the game...eventually 🙂

Unfortunately, following a good diet doesn't help with Type 1 and your chances of being diagnosed. No-one really knows what causes it

The good thing is that the sooner you get that insulin, the sooner you can enjoy your sausage and mash guilt-free! It's my favourite meal as well! 🙂

 

[TheClockworkDodo]

That's pretty much what I do.....

I haven't given this advice for a while so here it goes....
Cut or reduce carb sources such are Bread, Pasta, Rice, cereals & starchy vegetables (such as potatoes) replacing them instead with green leafy vegetables.

My plan for tonight (may changes as my wife may cook so all bets are off) is pork chops with cauliflower & broccoli.

Also cut out fruit for now, especially dried fruit and fruit juice, and sugary drinks like squash, fruit drinks, coke, lucozade. And pizza!

This is only a temporary measure, don't worry - if you are type 1, once you've got insulin you'll be able to eat more or less what you want so long as you have the right amount of insulin for it, though you'll only be able to have fruit juice and things like coke or lucozade if your blood sugar goes too low. I also had a pretty healthy diet before diagnosis, and the only thing I was told to give up when I was diagnosed (I was put on insulin straight away) was fruit juice ... but I have so many hypos (low blood sugar) I still keep a carton of grape juice in the fridge at all times!

But for now the things to eat are meat, fish, eggs, nuts, cheese, and lots of veg and salad. If you still have high readings on that then we'll be even more sure you're type 1.

 

[TheClockworkDodo]

I should have said, if you want something sweeter I'd have a yogurt - the fat in it will slow down the effect of the carbs. Small quantities of dark chocolate should also be OK, though if you can do without sweet things just for now it would be better.